Pain With Purpose

J-tube update and a prayer request for my uncle ❤️

Thu, 16 Apr 2026 03:54:26 GMT

Hi, friends,

I just wanted to write an update on what’s happened since my last post. Sadly, the 2 different tube changes haven’t helped, and there’s still so much leaking around the tube. �� The abdominal pain was decreasing each day, but for some reason, it has ramped up again and has been steadily getting worse the last several days. The pain is sharp and throbbing—it also hurts to use my abdominal muscles. I saw my primary care dr. this past Friday, and he ordered an urgent CT scan. I had that done this past Monday, and the scan shows that the balloon on the tube is lodged in my abdominal wall (it’s called buried bumper syndrome). �� So painful, but I’m thankful for answers! I actually had this issue many years ago, and usually, changing the tube size helps. But we’ve already tried 2 different tube sizes in March which hasn’t helped. I don’t know if the tract got damaged or what..

My PCP messaged the surgery team twice now, but they’re not responding still. Ever since my general surgeon left OHSU 2ish years ago to practice in New Orleans, it hasn’t been a good transfer to a different team. ��

In addition, the CT scan also revealed that I have ground glass opacities in my left lung, so I have to go through work-up for that as well to figure out the cause..

Aside from these latest issues, I’m praising God that my mitochondrial disease has been stable still!! So thankful for God’s grace and faithfulness.

The day I got my CT results, I read this excerpt below from one of Joni Eareckson Tada’s daily devotionals, and it was like the Lord was speaking right to my heart. I hope it’s an encouragement to you. ❤️

“Present pain and afflictions tend to heighten future joy. When is peace the sweetest? Right after the conflict. When does a cold drink taste best? When you’ve become very thirsty. When do you appreciate rest the most? After hours of hard labor. When is joyful company most pleasant? After enduring long days of loneliness. The truth is, our recollection of past sufferings may one day enhance the bliss of heaven. Eternity with the Lord will be so much more heavenly to those of us whose faith has been tested, battered, and tried, time and again.” -Joni Eareckson Tada

One more thing.. I’d really love prayers for my uncle (my dad’s older brother). He’s been very sick in the neuro ICU with serious issues. First pneumonia, then bacteria in his spine which later broke his back. He had a major spinal surgery but still can’t move his legs. �� On top of that, his kidneys started failing, so he had to be placed on continuous dialysis. He also had to be put on a ventilator due to fluid in his lungs. Then, he still couldn’t breathe well, so he had to get a tracheostomy tube placed in his neck. �� Despite all this, he and his family are so strong and trusting the Lord which is a huge testimony to all of us and to the ICU. Could you please pray for peace, strength, and healing over his body? I know he and his family would be so grateful for your prayers. ��

P.S. I wish I could show you my foster nephew’s sweet face in this photo from Easter Sunday! He is now 9 months old—the most precious and adorable little boy!! Our lives are so much sweeter with him in it. ��

Letter to my GI specialist 💚

Tue, 31 Mar 2026 01:43:38 GMT

Dear Dr. Phillips,

There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’)

With immense gratitude, Kerissa

J-tube update

Tue, 17 Mar 2026 01:24:36 GMT

"God is always doing more than we know, working toward a good we will one day rejoice in."

-Lysa Terkeurst

Hi, friends,

I just wanted to thank you so much for all of your sweet texts, messages, and prayers these past several weeks during this whole abscess/j-tube debacle. Your loving prayers have been carrying me through a rough bump in the road. ❤️

In my last post, I shared that the surgery NP ordered an x-ray with contrast to check tube placement. Well, the results showed that contrast would come out around the tube and pool onto the skin.

I was hoping they could get me in on Monday the 9th, but the smaller tube size had to be ordered. Thankfully, a resident was able to see me on Friday the 13th, but it sadly didn’t come without challenges.

The resident noted the raw tissue but wanted me to try the topical lidocaine gel first. He said that local anesthetic contains epinephrin which constricts blood vessels, and because of the raw tissue, there’s a higher risk for infection. Even though I’ve tried topical gel in the past (which didn’t help), I didn’t want to seem like a difficult patient, so I agreed. It numbed the skin really well, but not the tract itself. So when he tried pulling the tube out, I kept saying “Ow, ow, owww.” But he sadly kept going and pulled the whole thing out. I bled a lot and burst into tears because the pain was soo bad. I just have experienced one too many traumatic tube changes. �� He then decided to inject lidocaine before inserting the new tube, but I really wish that could have been done in the first place to avoid unnecessary pain and suffering. :’(

I’m really thankful, though, that the Lord blessed me with a kind resident—he actually apologized that he caused me pain (which I think is rare for a general surgeon!).

Could you please pray for the site and tract to heal completely—it’s still really painful and leaking, and I’m not sure if it’s because the tract got damaged from 2 back-to-back tube changes… :( Or, maybe the whole area is just really irritated and inflamed.. Saturday night, I couldn’t fall asleep until after 8 AM the next morning due to the pain. It feels like my small intestine is clenching/twisting which unfortunately causes the tube to push in and out throughout the day and night.

Please pray ❤️

Sat, 07 Mar 2026 01:48:46 GMT

Hi, friends,

I would really appreciate prayer. Some of you already know this, but at the end of January, I started dealing with an abdominal abscess right next to my j-tube. I looked back through my records, and that was my 6th abscess. :( Since then, it’s sadly been one issue after another.

I won’t go into all that has happened, but I’d especially love prayer for my j-tube site. After the abscess, I had my tube changed to a new one on 2/27. The surgery nurse practitioner decided to try the next size up to see if it could possibly decrease some of the leakage, but unfortunately, that was the wrong decision. It’s too large, so now the site is leaking tenfold compared to my previous size. The small intestinal fluid that keeps leaking out around the tube is full of acid which is burning my skin and making it raw. �� If you want to know what it feels like, imagine having a bad burn on your skin…then, on top of that, imagine acid being poured onto the burn every hour continuously. That’s how much pain I’ve been in, and I haven’t been able to sleep very well until after 6:30-7 AM each night because the burn is so intense! :’( I could cry, and I have—that’s how bad the pain is… I would show you a picture of the site but it’s not pleasant. ��

I’ve been emailing the nurse practitioner every single day, asking to have the tube changed back to the previous size. She hasn’t been helpful. I’ve tried all of her recommendations, but they aren’t fixing the root cause. I had to get an x-ray with contrast earlier today to check tube placement.

If she does eventually agree to have the tube changed, I don’t know how I’ll bear the pain of the procedure… Remember, they don’t use sedation for these procedures (my GI specialist is shocked they don’t!), and even though I’ve been asking for lidocaine to be injected for past tube replacements, how do I bear to have needles pushed into such raw tissue?! ��

Please pray that I will be courageous and strong in the Lord. I think of the verse from Philippians 4:19, and it’s comforting: “And my God will supply every need of yours according to his riches in glory in Christ Jesus.” He will grant me the peace and strength I need to be brave. His grace is sufficient. ❤️

Reflections on the year 2025 ❤️✨

Sat, 03 Jan 2026 02:55:22 GMT

Dear friends,

As I reflect back on 2025, January started off looking very bleak. I had just recovered from yet another “mitochondrial crash” in December 2024, but my neck weakness was still significant and unresolved. I mentioned this many times, but I’ve never before experienced such severe muscle pain in my neck—it felt like my neck was doing a constant “plank exercise” 24/7. I cried so much and needed relief. �� Before this, I also truly took for granted how vital neck muscles are for ALL movement. Even simply standing requires neck strength to hold the head up. I was confined to my bed and the recliner because the neck weakness/pain was so debilitating.

At the beginning of January was my long-awaited appointment with the neuromuscular neurologist at the University of Washington. But, the outcome was very disappointing because he simply took these symptoms to mean mitochondrial disease progression.

My eyes are watering and my nose stings as I type this with emotion because I didn’t know (like I do now) what the following months would hold. I really did wonder if I was starting to die because not only did I have this disabling neck weakness but I also experienced severe nystagmus every single day (it never happened this frequently before). The brain is what controls eye movement, so my brain wasn’t getting enough energy needed for the simple act of moving the eyes.

In February, after several blood tests came back with more “bad” autoimmune markers and I also started dealing with unusual joint pain in both elbows and shoulders, one of my doctors had me start taking 2 powerful antioxidants: N-Acetyl Cysteine (NAC) and Liposomal Glutathione. NAC, specifically, has shown that it can be beneficial for Lupus, an autoimmune disorder. We weren’t sure yet if my symptoms were early signs of Lupus, but my doctor recommended these antioxidants anyways for the mitochondrial depletion.

When May came around, I once again had another “mito crash” with significant muscle weakness all over my body (not just in my neck), droopy eyelids, nausea, and increased pain. I was so thankful, though, that we were able to manage this one at home and I didn’t need to be admitted! Even more amazing was the fact that this was the month I noticed I could slightly lift my head half an inch off of the pillow (when lying down). Was God healing my neck? ��

June was a big month. As many of you know, 2 separate muscle biopsies show that I have Mitochondrial DNA Depletion Syndrome, but the doctors still can’t pinpoint the genetic mutation responsible for this depletion. So the OHSU metabolic team and I all wrote letters to apply to the NIH Undiagnosed Diseases Network (UDN). And God answered the first of many prayers as my case was surprisingly accepted. �� I don’t currently have a recent update regarding this study as they told us it could take months or even years for anything to happen if anything happens at all (I should email them for an update). Last I heard, the team was analyzing all of my raw genetic data.

At the end of June, my internal medicine doctor referred me to the Complex Pain clinic since I was still experiencing so much pain and needing high doses of pain meds. The specialist started me on Buprenorphine, but it’s been a rough go of it. It definitely helps the pain to become more manageable (another answer to prayer!), but it also causes horrible insomnia which I’m still dealing with. �� My sleep specialist said I’m basically experiencing a bad case of chronic jet lag—I’m simply exhausted and cannot fall asleep until 4:30-6:00 AM! �� A previous blog post shares about the “catch 22” I’m in. I’d so appreciate continued prayer for my sleep. It’s been very hard. :(

July through September was amazing as I noticed that my neck weakness had improved a little more each day to the point that it eventually fully resolved….!! I truly could cry tears of joy and gratitude! �� Even my physical therapist started noticing that I didn’t have to hold my head up with my hands when moving around! God answered everyone’s prayers, and I fully believe he miraculously healed me in this area!! Yes, it could be that the 2 antioxidants helped, or it could be that I had finally recovered 9+ months later from something like Viral Myositis of the neck from fighting a viral infection in Hawaii in October 2024. My doctors just don’t know fully. But I am in awe at God’s lovingkindness and great mercy. ��❤️ 2 verses come to mind... One is from Ephesians 2:4–“But God, being rich in mercy, because of the great love with which he loved us..” And the other is Philippians 2:27–“Indeed he was ill, near to death. But God had mercy on him..”

The phrase “But God” sticks out to me. It reminds me that God is the one who has a plan and purpose for our lives, and it may be totally different than what we think is best or what we’d like. I don’t know what I would say or how I would act if the neck weakness still persisted to this day.. It would be extremely hard, and I know I would struggle greatly mentally and spiritually. But I also know 100% that God would faithfully sustain me like he did during those long, dark months from October 2024 to May 2025 and on..

God’s mercy continues to be so evident as I’m physically in even better shape than I was back in 2023. �� Aside from my sleep, I’m doing so well that I might even have to find a part time job sometime down the road! I don’t know how long this “stable” period will last, and I know life could quickly change again in the blink of an eye (like it has in the past).. But, while I’m stable, I’m having the MOST JOY feeling quite “normal” and being strong enough/having the energy to babysit my almost 6-month old foster nephew. �� He’s over 17 pounds now, and every time I hold him, it’s such a GIFT from the Lord to have the muscle strength for carrying/lifting him!

I wanted to end this on a joyous note by sharing one last thing that happened in 2025–the opening of my Pain With Purpose Shop around my 33rd birthday this past October! ☺️

It’s a joy selling my handlettered designs (just a heads-up, my card inventory clearance sale ends on the 5th!). �� It’s also SO special that my church’s Care Ministry can send encouragement cards I’ve designed to those in our church body who are experiencing suffering. This gives me a little purpose since it’s sometimes hard not to feel useless living with a chronic illness (I’m sure many of you who are suffering can definitely relate..). ��

Unless something major happens again, I think this might be my last health update for a while as I’m so enjoying this stable season—I continually thank God for it and don’t want to take one moment for granted!

I love you all and am so grateful that you are here with me in the valleys and on the mountain tops. ��

Lucy turned 5 (and a sale!) ❤️

Sun, 28 Dec 2025 02:10:39 GMT

Lucy and I hope you all had a wonderful Christmas! ��❤️ Yesterday, she turned 5 years old!! Where has the time gone?! She brings so much joy and laughter to our whole family—we love her more than words. ��

To celebrate and as this year comes to a close, my Pain With Purpose Shop is having a sale—I would love to clear out some of my old card inventory to make room for fresh, new designs in 2026!! ☺️ All

cards have been marked down to $1.50 each. In addition, I’m also happy to share a promo code for FREE “first class” shipping which will work for all orders of up to 8 cards (unfortunately, an order of more than 8 cards switches to priority shipping..). To apply this offer, enter the code GOODBYE2025 to deduct the “first class” shipping fee. ✨ This sale and promo code will last through January 5th, 2026!

Please don’t feel pressure at all to order from me…some of you buy my cards at full price, so I wanted to mark the card prices down for a bit! I’m so thankful for you all—your many prayers all these years have truly uplifted and encouraged me. I pray you have a blessed and happy new year!! �� Stay tuned for my annual “reflections” blog post… ❤️

Catch 22

Mon, 17 Nov 2025 02:10:03 GMT

Dear friends,

Thank you so much for praying for me when I had that bad reaction to the autoimmune medication last month. I’m so incredibly blessed by your love and support. ❤️

I saw rheumatology recently, and instead of trying to prevent actual autoimmune disease from starting, they want to just monitor without any medication therapy. In other words, they want to see if more symptoms like fevers or rashes will appear (besides the joint pain that I already experience).. The medicine I did try (which worsened my mitochondrial symptoms) is actually the “safest” out there, and the other treatments for autoimmune disorders are much harder on the body—the team doesn’t think I’ll tolerate those well.. It’s difficult for them to know if all the bad antibodies that have been found in my blood will cause “actual” disease, and only time will tell.. So the plan is to just monitor and follow up with them in February.

I wanted to see if my body could recover from this setback without having my IV fluids switched to a higher dextrose percentage. But by the last week of October (week 3 of this mitochondrial flare), the muscle weakness and increased pain all over was sadly still persisting, so I told my doctor. He sent in a new IV fluids order with the higher dextrose, and I’ve been receiving it for about 2 weeks now. I have definitely noticed an improvement in the muscle weakness which has been a huge blessing from the Lord. It was such a gift to feel well enough to go to a friend’s wedding reception at my church last week. �� My cup was filled because I haven’t been able to see so many church friends in years!

Regarding the piece of plaque that traveled to a small artery in my retina, I just had the carotid duplex scan completed last Tuesday to see if there’s any narrowing in the neck arteries. I also have the heart echocardiogram scheduled for tomorrow.

My biggest, ongoing struggle has been my sleep. I’ve sadly been in a “catch 22” situation for many months now. I mentioned before that I was started on a new and safer pain medication this year. A rare side effect is insomnia, and it’s simply horrible. Night after night, every single day, I’m not able to fall asleep until after 4-6 AM. �� Believe me, I’ve tried every type of trick…from different sleep medications that my sleep specialist has prescribed, to all sorts of sleep supplements, praying, listening to worship music or white noise, stopping caffeine intake, etc. Nothing helps. The thing is, if I didn’t take this “new” pain medication, the pain from Mitochondrial DNA Depletion Syndrome is difficult to manage and it’s like an 8-9 on the pain scale. So then I’m up through the night, in horrible pain, and not able to sleep. But when I do take this medication, the pain is manageable, and it’s much safer to be on... Yet, I can’t sleep well while on it... Catch 22.

I don’t know what to do, and it’s hard not to feel alone in this struggle. I’m so thankful to God that my health in other areas has been pretty stable.. In fact, this month (November) marks ONE WHOLE YEAR since I was last admitted to the hospital! Isn’t that soo amazing? Aside from these occasional mitochondrial flares/crashes (which happened in December, May, and October), I’ve been doing incredibly well, now that the neck weakness has resolved.

But, this sleep struggle persists day after day.. I would love to be able to attend my church’s morning service in person or do many other activities in the morning. �� But I’m super exhausted. So many times, I ask God, “How do I go on and keep doing this every single night?” One thing I’ve learned is that God’s grace is truly sufficient for each day. He is the one who supplies me with the energy and grace to keep enduring. It’s hard, and I don’t know how long this sleep trial will last.. But, as Thanksgiving draws near, I’m reminded that I do have so much to be thankful for. Some of the biggest things: being physically able to help babysit my 4-month old foster nephew, shopping at the grocery store, having hand strength to design new note cards like the ones shown here, no longer experiencing neck weakness, and much more. The verse from Zephaniah I recently hand lettered above has been so encouraging lately. God is right by my side; he is mighty to save and will keep helping me through anything that I face. ❤️

October prayer request

Sun, 19 Oct 2025 00:26:01 GMT

Dear friends,

At the beginning of October, I started taking a new medication for the autoimmune disease. I thought I was tolerating it just fine, but after several days passed, I began experiencing nausea, loss of appetite, weakness all over, and increased pain. �� It’s like I’m experiencing another “mito crash.”

I found out that this specific lupus medication affects mitochondria. That is, it causes an overproduction of reactive oxygen species (ROS). This, in turn, causes cell damage and oxidative stress.

I sure wish the rheumatologists would have known about this before prescribing. But I have to remember that Mitochondrial DNA Depletion Syndrome is rare, and they’re not “mito experts.” Anyways, the last time I felt like this was back in May.. I’m so grateful to God that I haven’t needed to be hospitalized from this, but at the same time, I’m also sad that this happened at all, especially because I had such a nice stretch of stable health. I’d really appreciate your prayers, that this muscle weakness can resolve soon, and that this increased pain all over will get back to my baseline. Every time I have a “mito crash,” it feels like I’m fighting the flu which always sucks. The pain has been hard to bear. And whenever I’m in the thick of it, it’s difficult to remember that this too will eventually pass. �� Pray that I will endure and follow Jesus’ example like this passage from Hebrews 12:1-2– “Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross...”

Thank you all so much for praying for me. ❤️

Thank you! (+ a prayer request)

Sat, 04 Oct 2025 01:40:28 GMT

"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness."

James 1:2-3

Dear friends,

I just wanted to say a big “thank you!” to all of you who placed an order from my new shop!! In just 2 days, I was able to sell more than 110 cards!! �� I’ve received such sweet words about the store itself which was so nice to hear! Please know your kindness and thoughtfulness in placing an order truly encouraged my heart and is such a blessing—this definitely wouldn’t have been possible without your loving support! ❤️

I saw my neuro-ophthalmologist this past week for my annual visit to check up on the eye muscle paralysis I have in both eyes (called external ophthalmoplegia). I first saw the resident, and he asked me a startling question: have I had any strokes lately? I was totally not expecting that! Sadly, during the exam, something was found in my right eye. There’s a piece of plaque that’s stuck in a small artery in my right retina. �� They explained that it most likely traveled up, and they’re concerned that more tiny pieces could travel up to my retina and cause blindness. So I had to get labs drawn to check my cholesterol level, and I also have to get a heart echocardiogram (I just had one this past March) and a venous duplex carotid neck ultrasound done. They said this can even happen with normal cholesterol levels or normal scans, though.. Regardless, it’s rare, and they haven’t seen this in someone my age.. It’s not fun being “rare.” ��

It’s scary to know about this and yet another thing I need to leave in the Lord’s hands—so comforting that nothing is a surprise to him. If the scans end up being normal, could you please pray that no more pieces of plaque will travel up to my eyes?

Love you all, friends!

P.S. I sent an email about my store opening to those on my email list, but I realized I didn’t post it here on my actual blog! My store link is: https://www.painwithpurpose.com/store

In honor of my 33rd birthday coming up on 10/7 and to say thank you for your love and support, please use the code 33BDAY to receive 33% off of your order! ☺️ Note: the discount does end on 10/7. ��

Praises & Prayer Requests

Wed, 03 Sep 2025 01:07:34 GMT

"The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness."

Lamentations 3:22-23

Dear friends,

These last several months, I’ve been working hard every day, making sure my Pain With Purpose shop is ready to be officially opened. Not only have I been creating art daily for new notecard, bookmark, and magnet designs, but I’m also using an e-commerce site that’s different than Etsy because Etsy sadly has so many fees.. It’s taken a lot of time learning the ins and outs of the new site on top of listing every single item with its description, picture, quantity, and weight—my mind is blown by how much is involved! Definitely makes me appreciate small shops even more. ❤️

I’ve also sadly had to deal with numerous challenges from my supplier who prints the notecards. They did an amazing job in the past, but for some reason, the quality of their printing started showing issues, so I’ve been on the phone countless times to get those resolved.

All that to say, I’m so excited to share that, Lord willing, my store will finally be opening at the end of September. �� I hope you’re excited like I am!

Now for the good and not-so-good medical update..

A few months ago, I shared that my doctors wanted me to try a new/safer pain medication. Well, it has really helped my leg pain (which is wonderful!), but at the same time, it’s also been causing the unfortunate side effect of insomnia. �� When I was taking a higher dose of this new medication, I wasn’t falling asleep until after 6-7 AM. So I decreased the med, and I now fall asleep between 3-4 AM which has still been so hard. I’m exhausted every day from only getting about 6 hrs of sleep per night—it would be ideal to obtain at least 9 hrs of sleep since my body has such a significant mitochondrial depletion.. I have an appointment with my sleep dr. at the end of September to figure out what to do, and in the meantime, I’m trying to adjust different meds or add other natural sleep aids, but it continues to be rough. ��

In other news, I’ve shared this many times throughout the past decade, but due to having hypermobile/loose joints from Ehlers-Danlos Syndrome Type 3, I tore my left hip labrum in 2016 and had it surgically repaired that same year. I then tore my right hip labrum in 2018 and had it surgically repaired. Well, I re-tore my right hip labrum in 2021, but sadly, I never had the chance to get it repaired because of so much going on mitochondrial-wise.. I wrote in a previous post that I started experiencing left hip pain and pain behind my hip 3 months ago. I had yet another MRI arthrogram where the radiologist injects dye into the joint. I’m sad to say that the results are not good. There’s a degenerative hip labral tear from the posterior 11:00 position to the anterior 2:00 position which means it’s much bigger than my previous tears. �� I’m grateful for answers, but it sure has been hard to have pain in both hips! My PCP referred me to orthopedic surgery for their opinion..

I also had my right shoulder MRI completed, and due to having loose joints, the results showed some fraying of the rotator cuff, fluid in different spots, and areas of tendinosis. Thankfully, it’s not severe, but I have an appointment next month with my physical medicine specialist to talk about options.

Last month, I saw the second opinion rheumatologist to go over my autoimmune results. He wanted repeat testing but through a reference lab like Labcorp. So I had that done. We did get my results, but he’s booked out past January! So I met with his PA recently. Unfortunately, my results looked even worse in a way. I was diagnosed with an “undifferentiated autoimmune disease.” This diagnosis is when you have numerous abnormal labs and harmful antibodies in the blood, but you don’t fully fit a certain criteria for specific autoimmune diseases like lupus, polymyositis, mixed connective tissue disease, etc. But because of my abnormal labs, I will be treated as if I have the early stages of lupus. I’m being started on a popular but pretty safe lupus drug. It sometimes has a very rare side effect of retinal toxicity. So I have to get a baseline “optical coherence tomography” (OCT) eye exam through my neuro-ophthalmologist at OHSU. I don’t see her until the end of September, though.. When I do eventually start this new drug, could you please pray I will tolerate it and have no allergies or bad interactions? ❤️ Could you also pray that this treatment will help the joint pain in both shoulders and elbows—they hurt so much every day. We’re still not sure if the severe neck weakness I experienced for 7+ months was some sort of autoimmune flare, so we’re praying that this drug can prevent the neck weakness from coming back. It’s amazing and a huge answer to prayer that my neck is doing as well as it is! Feels back to normal! ��

Here’s another big praise, too. My mitochondrial depletion symptoms have been pretty stable lately—I know it’s only by God’s grace and your prayers! �� On top of that, it’s been almost 10 months (a great record!) since I was last in the hospital for a mitochondrial crash! The time before that one, I had a severe mito crash followed by sepsis, so I was in the hospital for more than 5 weeks from the end of January through the beginning of March 2024.

Despite these latest challenges with joint pain, labral tears, and rheumatology issues, I’m just so thankful to God for this long period of feeling stable mito-wise. ��

I want to be honest, though. I’ve been feeling much better lately, so it’s gotten harder to be “stuck” at home. �� I don’t have a car and can still only drive short distances. I never could have imagined that I’d be almost 33 and in this situation. When I was feeling especially trapped at home and watched everyone get to do the things they wanted to do outside of home, this was the headline I read for that day’s devotional by Paul David Tripp: “No matter how stuck you might seem, something in your life is new every morning: the mercy of the Lord.” That immediately brought tears to my eyes because it is so true. �� The author continues on, saying, “Each morning the people of God are blessed with mercy from the Lord that is form-fit for the trials, opportunities, pressures, obligations, griefs, and temptations of that day. God’s mercies are not sitting dusty in a warehouse. No, like fresh fruit, they are hand-delivered by the Savior every day.” I hope this passage is an encouragement if you feel “stuck,” too. ❤️

Thank you for being on this long journey with me and for continuing to pray—I’m so blessed by your love and support! To end, here are a few more card designs I’m excited to share when the shop is open! ��

15 Years

Mon, 14 Jul 2025 00:31:49 GMT

"We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.."

Romans 5:3-4

Hi friends,

I just wanted to let you know that my “consent call” with the UDN genetic counselor went well a few weeks ago. She explained what the process is like for those who are accepted into the study. The first step is an appointment with a biochemical geneticist at UW, but because I don’t currently need additional tests (like a muscle biopsy), this appointment can happen via telemedicine. That will be on July 21st! Once I have that visit, he will form a plan and discuss it with the UDN principal study investigators. :)

I unfortunately had to reschedule my tube change last month because my muscles were still feeling pretty weak from the moderate “mito crash” that happened in May, so Lord willing, it will now be replaced on July 25th. Would appreciate your prayers once again as these tube changes are always so painful.. ��

I’m bummed to say that I’m still experiencing quite a bit of hip pain (despite weekly chiropractic adjustments and physical therapy sessions), so my PCP ordered an MRI arthrogram of the hip. Because an arthrogram is a full procedure with fluoroscopy and a gigantic needle (��), they’re quite booked out and it’s not until late August. �� An arthrogram vs. a standard MRI will show us if I re-tore my left hip labrum.. In addition, my right shoulder joint continues to cause significant pain as well as clicking/popping sounds, so my doctor ordered an MRI of my shoulder.. Hopefully they can both be completed at the same time..

Some good news is that the rheumatologist I’ve been waiting 5+ months to see had a cancellation, so I can now see him later this week instead of the end of August! �� What a blessing from the Lord. Please pray for wisdom and that this doctor will have a clear picture of what could be causing all this joint pain..

I’ve been really reflecting these last several days because this month marks 15 whole years since this medical journey started. Somedays it feels like a nightmare that I can’t wake up from, but other times, God’s peace and comfort is so evident, and he has lovingly been carrying me through the hardest trial of my life. I know the Lord called me specifically to this path, and in a way, it’s special to know that I can “share Christ’s sufferings” (1 Peter 4:13, Philippians 3:10). These 15 years have flown by but also often dragged as I wake up day after day fighting mitochondrial disease and the other diagnoses. I wish this long journey could end soon. But Randy Alcorn wrote this recently, and I feel like it was meant just for me (especially the last sentence):

The Apostle Paul says, “I’ve learned the secret of being content in any and every situation…” (Philippians 4:11-12). Notice he doesn’t say, “One day God sent an angel to teach me how to be content.” No, he had to learn it over a long period of time. One reason God allows times of suffering in your life is to move your heart more completely to Him and to teach you His sufficiency. ❤️

God has definitely been showing me that he is sufficient in all things—in the good times and bad. Through the next 15 years, I pray that I will keep leaning fully on him and remember that “for those who love God all things work together for good, for those who are called according to his purpose” (Romans 8:28).

To close, I read this beautiful poem online the other day and wanted to share it because it’s so encouraging. The Lord has been so faithful and gracious through this long journey. I know he is with me and for me! �� Thank you so much for praying for me these last 15 years—you truly help bear this burden! ��

“Making Whole” by Rachel H:

Our God is a good gardener,

Even when it hurts to grow.

Every day He works in our lives

In ways we will never know.

He gets up early in the morning

To tend to the budding shoots

And water the fertile ground

That is slowly bearing roots.

His timing is held carefully

In His soil-stained hands.

He knows when to sow the seeds

And when to reap the land.

But sometimes we can doubt

If our God is really good

Because He gardens us in ways

That we don’t think He should.

When He prunes our dormant branches

Or pulls weeds from the ground,

We worry that this rooting out

Will last the whole year round.

But the gardener is patient,

Returning each morning with care.

Because He knows the kind of fruit

His plants will one day bear.

Just know a time will come

When our gardens will come alive,

And everything that was cut back

Will soon begin to thrive.

Our God is a good gardener,

Even when it hurts to grow.

Every day He works in our lives

In ways we will never know.

The latest.. (a mix of wonderful news and rough news)

Sat, 21 Jun 2025 00:36:35 GMT

"Weeping may tarry for the night, but joy comes with the morning."

-Psalm 30:5-

Dear friends,

I was going to start off this update with some rough news (which I’ll share below), but I just received an important phone call this afternoon. God knew my heart was really struggling and that it needed some encouragement. The news is that I GOT ACCEPTED to the Undiagnosed Diseases Network through Harvard!!! �� Just want to clarify that not every accepted patient finds the disease-causing gene, but it’s still so amazing that my case got accepted in the first place! All praise and glory goes to God!!! ❤️ Thank you so much for praying for this, too. �� I have a “consent call” coming soon where I’ll learn what the next step is. :)

Now to the challenging news…. I don’t know how it even happened, and it just came out of the blue. Last week, I started experiencing left low back and hip pain, and it has continually worsened to the point that I was in tears during the night due to the pain. �� It’s been rough to deal with a new pain issue combined with all of the other pain: deep, achy pain in my legs from the mitochondrial depletion, nerve pain from the small fiber neuropathy, hip pain from the right hip labrum that I tore a second time a few years ago (I haven’t been medically stable to get it surgically repaired again), and joint pain in both shoulders and both elbows from a currently unknown issue. �� Still waiting to see the rheumatologist in late August. It’s difficult to be in pain all over my body 24/7, and it’s hard not to get overwhelmed by everything. It’s especially rough when I have to act normal on the outside even though it hurts so much on the inside. ��

I’ve been crying out to God, asking for all this to resolve, but if it’s not his will, that he will help me to endure. In Psalm 22, David lamented, “I am poured out like water, and all my bones are out of joint.” That’s what my thirty-two-year-old body feels like. �� And yet, later in the same chapter, David was still able to praise the Lord: “For he has not despised or abhorred the affliction of the afflicted, and he has not hidden his face from him, but has heard, when he cried to him.” Please pray I can find ways to praise God in the midst of this constant pain. ❤️

It’s also been feeling like the enemy doesn’t want me to open my upcoming store because every time I start to physically improve (like when I recovered from this latest mito crash), I get closer and closer to officially opening, but then…something new like the above happens. ��

I saw my PCP, and we talked about what could be causing this back and hip pain. We’re not sure if there’s something going on in the lumbar spine. Or if I possibly re-tore my left hip labrum again but in a different spot.. So he’s going to connect with my physical medicine specialist to see what type of scan should be ordered. In the meantime, he increased my pain medication, and I see him again virtually next week.

Even though it’s been a tough last several days, I wanted to end on a positive note to share some more huge news that I’ve noticed my neck has been getting stronger after a long 8+ months. Isn’t that so wonderful? This joy has been dampened a bit by all the other hard things going on, but it’s still a wonderful gift from God. �� I can’t wait to surprise my neuromuscular neurologist the next time I see him since he was the one who thought my neck strength couldn’t improve.

When I next update, I hope by then I’ll know the full plan from the UDN. ��

Mito crash update (with additional prayer requests)

Mon, 02 Jun 2025 00:35:42 GMT

I, the LORD your God, hold your right hand; it is I who say to you, "Fear not, I am the one who helps you."

Isaiah 41:13

Hi, friends,

I was so excited to share that after 3 weeks fighting this latest “mitochondrial crash,” I had improved quite a bit, but yesterday, the nystagmus suddenly returned, and it was so rough that I was very nauseous last night.. �� Today my eyes are droopy again. Not sure what’s going on and if I’m having a mini relapse? ��

Still receiving the IV dextrose infusions every day, and I pray this is just a tiny setback with a better day tomorrow.. Mitochondria use glucose to turn it into ATP (energy), and during these flares, my body needs so much dextrose (sugar) infused straight through my port which goes directly to my heart.. I have a sweet tooth, and I was telling my mom how funny/sad it is that I can’t just eat sweet things to keep these mito flares away. ��

I’m thankful IV dextrose is helpful, but it doesn’t come without its risks because bacteria feeds off of sugar, and if it gets into my port, then it can cause a bloodstream infection and sepsis (which I’ve had 6 times).. Hard to believe this year marks 10 years with a central line/port. For almost half of that time, I had to receive total parenteral nutrition (IV nutrition) due to significant GI dysmotility from the mitochondrial depletion. I dropped down to 77 pounds because it hurt so much to digest food and my stomach always got super distended. But by God’s kindness, I’m so thankful that I’ve been able to eat enough orally since 2020. ❤️

Would appreciate your prayers for this coming Friday as I will be transitioning to a different pain medication. I’ve been on my current one for probably more than 6 years. But it’s not the safest, and I’ve needed especially high doses these last 6 months from the numerous mito crashes and severe leg pain. I so wish I didn’t need strong pain meds, but there’s no cure for Mitochondrial DNA Depletion Syndrome, and I’ve exhausted all other options. �� I’m on a ton of supplements for pain and have even tried numerous natural therapies. I used to have a spinal cord stimulator (SCS) in my back that helped disguise the pain signals in my legs, but it’s 100% contraindicated in my case due to the port. If I had a port infection, bacteria likes to stick to metal in other parts of the body, and a SCS infection would cause paralysis since the SCS device is placed near the spinal cord.

Anyways, I tried this pain medication they want me to take back in 2016, but it landed me in the ED due to vomiting, weakness, and a high white blood cell count. I had to be admitted for all that. My doctors think it was just an extremely weird phenomenon because they’ve never heard of those side effects from this medication. So we’re going to try it again but introduce it in micro doses the next several weeks. Could you please pray those adverse side effects won’t happen again and also that my body doesn’t go into withdrawal (especially because I’ve been on this current medication for soo long).��

If this is a successful induction, it would be amazing because it’s very safe!

This coming Friday, I also have to get my j-tube replaced which I’m dreading. It’s a horribly painful procedure, and they don’t provide sedation for it. �� When my tube was replaced 2 or 3 years ago, the surgeon had difficulty removing it, so she accidentally yanked the whole tube out without deflating the “balloon” portion of the tube. I burst into tears and bled a lot! I’ve had so many traumatic medical experiences. �� This time, it will be done with a new specialist because my surgeon transferred to her hometown in New Orleans. Could you please pray I’ll have courage, that the tube change will go smoothly, and the area can be numbed well?

Thank you all for your faithful prayers. So grateful to have prayer warriors like you—your love and support always encourages me. ��

P.S. This is another card design that will eventually be sold in my shop! Isn’t the verse from Psalm 59 so comforting? �� The shop isn’t open yet, but I hope it can be soon once I get over this flare. ❤️

May update (and sneak peek!)

Fri, 23 May 2025 01:06:12 GMT

How unspeakably wonderful to know that all our concerns are held in hands that bled for us.

-John Newton

Dear friends,

Last week, I started experiencing some “mito crash” symptoms again.. So thankful to God that this one’s mild compared to the 2 flares I had in November and December, but it’s still been a bit of a challenge in its own way. �� My dr. ordered dextrose infusions, and I’m grateful he was able to place orders quickly to nip this in the bud faster. I’ve improved in many ways (my eyes are no longer droopy, my bladder/kidneys are functioning back to normal, etc.), but my muscles are still weak/heavy, and the pain is severe—I haven’t been able to fall asleep until 5-6 AM….so very exhausted. �� Would be grateful for your prayers that I can return back to my previous baseline!

I mentioned in my last post that my elbow joints have started to become painful, and I’m sad to say that both shoulder joints are now hurting as well. �� The rheumatologist said that conditions can happen gradually sometimes, and I’m wondering if that’s the case with me. Not that I want another disease, but it would be so nice to have some answers as to why I keep having crashes since something seems to be exacerbating the mitochondrial depletion.. Since January 2024, this marks my 4th one. But before January 2024, I had only one flare which was all the way back in 2020! And, that was also the first time it ever happened!! It would truly be a dream if my body could become more medically stable like it was in my 20s. ��

My second opinion with another rheumatologist was originally scheduled for late June (which I’d been waiting months for), so it was discouraging to receive a phone call recently from his office, saying that he’ll be out of the clinic that day. The appointment has now been pushed out to the end of August—I sure wish it was required for doctors to give notice more than 2 months in advance.. ��

Haven’t heard yet what the Undiagnosed Diseases program has decided regarding my case, but as soon as I hear, I will be sure to update you all with the final decision of acceptance or not! Would appreciate your continued prayers about this.

In other news, I’ve very slowly been working on having my lettering art made into notecards and other fun items, and the art in this post is one of the designs (of many ��)! The cards even have my Pain With Purpose logo on the back. ��

It’s taken a lot of time and effort with how much goes into starting an actual shop, but I’m so excited. I’m sure I speak for many (who are living with chronic illnesses) that it’s hard not to feel useless.. �� So it’s truly been special to work on something like this, and I hope my cards and other products can be an encouragement to many. ��

New Struggles

Wed, 30 Apr 2025 00:39:24 GMT

"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world."

-John 16:33-

Dear friends,

This was a hard post to write. I had 2 rough appointments recently…both just a few days apart—one with my primary care physician and the other with my neuromuscular neurologist. I broke down and cried a lot at each of them. �� It doesn’t seem like I’m improving with time, so my PCP recommended that I be seen at the center for complex diseases in Seattle, but we found out they don’t take insurance (in addition, the very specialized autonomic neurologist also in Seattle that one of my other doctors referred me to doesn't take insurance either).. ��

My doctor always shows such compassion (very thankful for him!!), and he explained that something needs to be done because I’m continuing to struggle even more. I’m starting to experience brain fog which has been difficult. If I’m searching something online, I suddenly forget what I was looking for. More than a few times now, I said something to my family, and they told me I already brought “that” up. ��

My elbow joints have been so achy and painful lately. We don’t know if this is related to a slowly developing issue—the rheumatologist said sometimes symptoms can gradually develop before it becomes a full-on autoimmune disorder, and she said to watch and pay attention to any new symptoms.. I still have the second opinion with a different rheumatologist in late June..

On top of all this, I began experiencing terrible muscle spasms in my low back muscles which wake me up in the morning. �� The neurologist said this is called “spasticity” and is a muscle control disorder characterized by tight or stiff muscles and an inability to control those muscles. I’m not able to get quality rest at night due to these muscle spasms as well as the frequent central apnea episodes that occur (detailed in a previous blog post). ��

My nystagmus has also been simply horrible and always occurs now with mild activity (it used to just happen with sepsis or when a “mito crash” was brewing). If you are curious what nystagmus is: it’s like seeing the world through a very shaky camera lens, and your eyeballs oscillate back and forth horizontally. The brain fog and nystagmus is happening because my brain is not getting enough energy due to the mitochondrial depletion. The pain in my legs has also been very hard to deal with (especially at night), and this, too, is caused by my nerves/muscles not getting sufficient energy. ��

We’re trying to manage these difficult symptoms with medications and all sorts of supplements, but it’s still so rough. ��

My neurologist said degeneration is occurring. Had a difficult discussion with him about what to do. I already receive a 4 hour infusion 5 days a week, but he wants me to receive another half a liter of IV dextrose and run it quickly over 30 minutes.. He hoped to add a specific amino acid to each bag, but we found out my infusion company can't supply it or even order it which was so disappointing.

Very weary and exhausted fighting this mitochondrial depletion syndrome day after day with no reprieve. �� This July will mark 15 years of fighting mito and all my other diagnoses. Please pray for supernatural endurance to keep persevering. Pray that I will lean on the Lord, draw strength from him, and not lose heart. I know this is just a rough season I’m in which will hopefully pass, but it’s hard while in the thick of it. Trying to remember that the Lord carried me through 15 long years, and he will do the same for the next 15.. ❤️

This passage from 2 Corinthians comes to mind, and I really resonate with it:

“For we do not want you to be unaware, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again.” -2 Corinthians 1:8-10

So thankful Jesus is with me in the midst of all this suffering. Could you please also pray hard that the Undiagnosed Diseases Network through Harvard will accept my complex case and work to find the gene mutation responsible for this worsening mitochondrial depletion? If a mutation is found, then I could potentially be enrolled in clinical trials! The UDN has a 40% acceptance rate, and I should hear the final decision in 2-3 months..

Thank you so much for your continued love and prayers, friends. ��

More difficult news..

Wed, 09 Apr 2025 00:33:59 GMT

Dear friends,

I’d really appreciate your continued prayers. �� Thank you for being on this journey with me through the good and bad. ❤️

Last year, I had a sleep study where I shared that I was diagnosed with moderate Central Sleep-Disordered Breathing (central apnea happens when the brain doesn’t tell your body to initiate breaths). It was noted that I stopped breathing about 17 times per hour. Well, my neurologist wanted me to get yet another sleep study last month to make sure this neck weakness hasn’t caused worsening apnea. And I’m sad to share that the results were much worse than last year’s. :( I thought last year was bad, but this latest study shows that I stopped breathing more than 40 times per hour (almost 400 times total through the whole night). �� This was hard to hear and also such a reminder that God is the one who gives us “the breath of life” (Genesis 2:7) every minute. It’s by his mercy that we wake up to each new day. ☀️

What makes my case complex is that my esophageal sphincter has been affected by the mitochondrial disorder—it’s weak, so when air from a sleep machine is pushed down into my lungs, bad throat gurgling happens which keeps me up at night because my esophageal sphincter can’t close all the way like it should. :(

My appointment with the rheumatologist was yesterday, and I wish I could say she gave a concrete diagnosis of what’s been happening these last several months…but that wasn’t the case. �� I have to get more specific labs done. She also ordered x-rays of my hands and feet to check for possible spots of rheumatoid arthritis or calcinosis.

The doctor said sometimes a new condition happens gradually, and it’s a wait-and-see type of situation. �� If these additional tests and labs still don’t give a clear cut answer, I’m so glad I have a second opinion with another rheumatologist at the end of June. This one sounds especially good because he’s a DO (doctor of osteopathic medicine) and offers a whole-body approach regarding treatment. Could you please pray something can be done soon as my quality of life continues to be rough, and these latest symptoms have been going on for half a year now. :’( Hard to believe October was 6 months ago! All this time, I’ve just been waiting..

I did ask my PCP at one of my appointments if he ever orders treatment for something even without a definite diagnosis, and he said “yes” which was encouraging to hear. His family leave is almost over, so I see him again soon.

Just finished a virtual follow-up with another one of my amazing doctors this afternoon. �� She knows a very specialized neurologist in Washington who has his own private practice. She wants me to see him and hopes he’ll be able to connect all the dots and see the bigger picture. So blessed by all of my many doctors who try their best to help me! ��

I started the process in applying to the Undiagnosed Diseases program through Harvard (it got pretty delayed because of my 2 mitochondrial crashes in November and December). My application has been assigned to the Seattle clinical site. Please pray that the doctors who review my case will be able to accept me as a patient and find the genetic defect causing my mitochondrial depletion. The UDN acceptance rate is about 40%..

I saw this quote recently by Martin Luther and just had to hand letter it (so thankful for one of my neurologists who increased the anti-seizure medication which has been helping to decrease my hand tremors). ❤️ This statement by Martin Luther is such a beautiful reminder. All that’s happened lately has been the hardest trial, but I’m praying that I will persevere and bear this cross daily to bring honor to the Lord. I know my life is in his loving hands.

I’m thankful for God’s promises in Romans 8:28–“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” ✨

February update ❤️

Thu, 27 Feb 2025 01:14:49 GMT

Hi, friends,

I went to see my neuromuscular neurologist in Seattle last month, and since there are no neuromuscular specialists here in Oregon willing to see me, he kindly placed a referral for me to see a neurologist he trained who practices in Vancouver, WA!

That appointment was originally scheduled for late April, but this new doctor moved it way up, and I was able to see him at the end of January! �� I’m so grateful for him, and he seems knowledgeable about mito. He told us that I “am easily the most complex patient he has ever seen.” ��

I had to get a very painful test completed called an EMG (electromygraphy). It involves having big needles (larger/thicker than acupuncture needles) placed and pushed repeatedly into my neck and shoulder muscles. �� Hurt so bad!! I’ve had this done more than once on both legs, but it was much more painful on the neck! He wanted this test to check for active myositis since my MRI was inconclusive.

Well, the results show that this progressive neck weakness is due to mitochondrial disease progression, and not from myositis. Whenever I have a “mito crash,” I’m usually able to slowly bounce back afterwards with time. But since I’m not recovering, he explained there’s degeneration going on and that my mitochondria are dying. That was hard to hear. ��

We may have an idea why my condition is worsening quickly.. I received results from an extensive autoimmune panel which shows that 2 labs came back abnormal for a potential lupus diagnosis. We’re not positive I have it as I need more tests done, but my neurologist said that could definitely be what’s causing this mito progression. I have to see rheumatology now, but unfortunately, OHSU denied to see me. In my previous post, I mentioned that my pain doctor referred me to palliative care. Well, they, too, turned me down…. It’s just hard to fathom that multiple specialties at THE top hospital in Oregon won’t see me because I’m too complex…it’s so isolating and lonely. �� Since my PCP has a new baby girl and is out on leave for 2 months again, I’m so grateful for my GI specialist’s help—it was kind of him to place a referral for me to see a rheumatologist at Providence. That appointment is in April. Please pray my whole medical team will be able to find out the cause of why I have harmful antibodies in my blood.

It has now been 4 1/2 months since this all started. Time seems to crawl, yet at the same time, pass by quickly. My mitochondrial symptoms continue to worsen. For example, if I have a virtual visit with one of my doctors, just lying in my recliner and talking to them for 20 minutes causes horrible nystagmus afterwords. �� If it’s true there’s something autoimmune going on like lupus, it’s using up all the limited energy I have.. �� Could you also pray that the mitochondrial disease progression will slow down?

I wanted to share an answer to prayer—you may recall I posted last month that my Seattle neurologist sent a new referral for me to see my mitochondrial specialist in San Diego as it’s been 4 years since I last saw him. Well, even though he’s semi-retired, I’m so happy to say that he accepted me which is a blessing from God! Isn’t that so wonderful? �� He’s booked out ‘til September! But I’m not physically well enough to see him now anyways, so we’re praying my health will show some improvement 7+ months from now and I can travel then..

The Lord recently led me to The Tapestry poem written by Corrie Ten Boom. If you aren’t familiar with her, she was a faithful Christian during World War 2 who survived Auschwitz and the holocaust! You may have read this poem before, but knowing her testimony and how she had to go through extremely hard trials makes The Tapestry even more meaningful/impactful. ❤️ She is an example to me, and I hope this is an encouragement to you as well:

“My life is but a weaving
Between my God and me.
I cannot choose the colors
He weaveth steadily.

Oft’ times He weaveth sorrow;
And I in foolish pride
Forget He sees the upper
And I the underside.

Not ‘til the loom is silent
And the shuttles cease to fly
Will God unroll the canvas
And reveal the reason why.

The dark threads are as needful
In the weaver’s skillful hand
As the threads of gold and silver
In the pattern He has planned.

He knows, He loves, He cares;
Nothing this truth can dim.
He gives the very best to those
Who leave the choice to Him.”

-Corrie Ten Boom

Difficult trial 🥺

Tue, 21 Jan 2025 01:16:32 GMT

Hi, friends,

First off, the piece of art above was hand lettered by me last year before all “this” happened. I’m sad to say that I only have 3 or 4 pieces left to share until I run out.. ��

I went to see my neuromuscular neurologist in Seattle on January 8th. My neck weakness continues to progress which has been so scary. He said I need to get a neck MRI and some specific blood tests to check for polymyositis. If it is normal, though, his opinion is that this is mitochondrial disease progression. �� I haven’t seen my mitochondrial specialist in San Diego in more than 3 years (I started seeing him in 2014!), so I’m sadly no longer considered his patient. The neurologist sent a new referral to him, but I’m not sure if it will be accepted.. He’s almost 80 years old (one of the pioneers of “mitochondrial medicine”). And I don’t know if he’s cutting back on “new” patients.. Even if he did accept my case again, I’m currently not physically well enough to fly down from Oregon.. ��

My quality of life continues to worsen ever since this unusual neck weakness started this past October. I know I’ve said this before, but I truly miss doing all of my favorite things (like hand lettering art) or even simple tasks (setting up my own IV infusions, vacuuming, washing hair, etc.). �� Before October, I was even starting to drive to physical therapy or the grocery store. Yes, I’m 32 and still don’t have my driver’s license due to being preoccupied fighting mitochondrial disease for almost 15 years now. I never shared the exciting news that I was able to get my driver’s permit over 2 years ago, and it was so fun to drive myself to appointments close to home. Now, I can’t do any of the above which has been difficult to process. I shed tears every now and then just thinking about all that has changed. ��

I’m having to go to bed around 6:30 PM to lie down and rest my neck. But I’m so uncomfortable from the pain, and I don’t fall asleep until after 3 AM every night. So my pain dr. referred me to palliative care. ��I know it’s not hospice, but I’m still sad we’re at the point where I even need palliative care. Unfortunately, they’re most likely going to deny the referral (if they haven’t already) because we were told they only see cancer or heart transplant patients. I even checked if there’s palliative outside of OHSU, but they, too, see only oncology. It’s so hard that cancer gets a lot of funding, research, and support, and those with rare diseases are left “on their own.” It’s isolating and lonely. ��

I saw my PCP again, and he is just the best and full of compassion. ❤️ He placed the neck MRI as urgent and also ordered more labs to keep pursuing answers since all this is such an atypical picture if it was mito progression.. In case palliative turns my case down, my dr. told me that the internal medicine clinic has a complex and chronic pain management clinic (different from the pain center that I’ve been going to since 2011). He referred me to them to try and help me get more comfortable.

I have a wonderful team of doctors and an amazing naturopath, but I’m even going to see a functional medicine doctor for the first time on the 23rd. Praying he could maybe have some additional insight on everything and will offer some fresh ideas for treatment as well.. I also have an appointment with the metabolic geneticist on the 28th..

I’ve read through the Bible more than once, but it’s amazing how the Lord points us to specific verses at just the right time. I don’t know about you, but sometimes I think, “I don’t remember reading this before!” Paul David Tripp’s newest devotional Everyday Gospel has been so very encouraging. He shared 2 verses from the book of Genesis where Jacob said that God “answers me in the day of my distress and has been with me wherever I have gone” (35:3). Several chapters later, Jacob also said that God “has been my shepherd all my life long to this day” (48:15). When I read that, I felt such peace. God spoke to my heart to remind me that He is with me and for me….in every circumstance no matter how hard. ❤️

Could you please pray that I can have the MRI completed this month and not have to wait many weeks? Pray that all of my doctors will have wisdom as my case is so complex. Lastly, could you pray that I will persevere and keep walking by faith? I feel so weary, not only physically but also mentally and spiritually. ��

Thank you so much for praying for me all these years. ❤️

Progressive weakness 💔

Fri, 13 Dec 2024 01:10:38 GMT

"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken."

Psalm 62:2

Hi, friends,

It’s been more than a month since I last posted, and I’m sad to say that my symptoms have gotten much worse.

If you missed the update, this new weakness and pain put a lot of stress on my body, to the point that I went into another rough mitochondrial crash. The week before Thanksgiving, I was directly admitted to the hospital for 7 days due to nausea, vomiting, increased pain, nystagmus, very droopy eyelids, and more..

My “mito crash” symptoms thankfully resolved after receiving continuous IV dextrose and IV levocarnitine. The hospitalist (one of the most compassionate doctors I’ve ever met) also ordered the IV steroid dexamethasone to see if it would help this unusual muscle weakness in my neck, and it did! That was an answer to prayer, but, several days after getting discharged, my neck weakness started worsening again. �� We’re not sure if it’s due to the steroid wearing off?

It’s now difficult to lift my head off the pillow when lying down. I truly took for granted how vital the neck muscles are for any type of movement. �� I so miss being at my “normal” baseline and doing basic things like grocery shopping or even vacuuming. I also really miss creating hand lettered art like my old Christmas piece above from 2 years ago. �� Are you familiar with the “plank” exercise where you try to lift your abdomen off the ground horizontally as long as possible? Well, I’ve been in so much pain because it feels like I’m always doing a “plank” exercise but with my neck—it constantly aches and burns. ��

3 of my doctors have all tried to refer me to neuromuscular neurology locally for this new weakness, but the referrals have been rejected each time. No one wants to see me due to my mitochondrial depletion diagnosis. �� So I emailed my neuromuscular specialist up at the University of Washington Medical Center and told him all about what’s happened. By God’s grace, my doctor moved up my appointment with him from March ‘25 to January ‘25 which is so caring and compassionate of him, especially since I haven’t seen him in more than 2 years. �� Even more amazing is that he completed a fellowship in neuro-immunology at the NIH and specializes in inflammatory muscle disorders. His expertise in this area is an answer to prayer since my immune system seems to be attacking my muscles (based on a lab result that came back showing antinuclear antibodies in my blood)..

It’s been an incredibly difficult and scary time, and it’s even harder because all this is happening during the holidays. I often feel so alone, having to be bed/recliner-bound and miss out on so much. ��

But, despite all this, I’ve seen firsthand how God is still on the throne and is quietly working behind the scenes. Deuteronomy 31:6 and 8 has been an encouragement to me where it says that God goes with me and before me. This path is so painful, but I’m trying to remind myself that it’s not without its purpose. I may not know why this is happening right now, but I do know God is with me and will never leave me nor forsake me. ❤️

My primary care dr. is out on paternity leave until next month, so I saw his colleague yesterday. She was so kind and also very knowledgeable. She ordered the same steroid I received in the hospital to see if it will help this worsening neck weakness. If it is beneficial, she said that’s a great diagnostic tool because it tells us there IS something inflammatory going on in my body to cause this weakness..

Could you please pray that the steroids will help and also hold me over till I see the neurologist next month? If it doesn’t help, she said I may have to get directly admitted again.. ��

Could you also pray that my neurologist will be able to swiftly diagnose the issue and come up with a plan for treatment?

Pray that I (and my family) will trust the Lord through all this uncertainty and keep an eternal perspective. It’s so hard not to worry, but I’m so grateful for all of your loving prayers and support during this trial, friends. Merry Christmas! ❤️��

Rough Road

Sat, 09 Nov 2024 02:00:36 GMT

“Be still, and know that I am God.”

-Psalm 46:10

3 days after we got home from Hawaii, I wrote in my last post that I started dealing with really bad muscle weakness, fatigue, and pain. This weakness is like nothing I’ve ever experienced, and it’s even worse than weakness that comes after sepsis—that’s how bad it is. :’( It’s challenging and fatiguing to do simple day-to-day activities (like filling a cup of water or holding a book..). I wasn’t even very active before, but I was still much more functional than this, so it’s been devastating to pretty much be recliner/bed-bound. ��

If I knew that my strength would definitely return soon, this would be so much easier to bear. But I don’t know, so I feel like I’m in the middle of a desert with no water or end in sight. �� I saw my PCP again today—he noted that I have diffuse weakness. �� I had 12 different labs drawn afterwards to check so many vitamin/mineral levels, antibodies, inflammatory markers, etc. He said if everything is normal, we might have to do a muscle biopsy (but he hopes it doesn’t come to that)..

While we wait for all the results to come back, he prescribed more pain medicine since this leg pain has worsened and been hard to bear. He also ordered a new TENS (transcutaneous electrical nerve stimulation) device for me to use when the pain wakes me up at night. Thankful for all he’s doing to help me be comfortable. ❤️

In other news, I had a nerve conduction and electromyography study on both of my arms. Thankfully, my nerves look healthy, but the results did confirm a significant tremor.

As I posted before, neuromuscular neurology turned down my case, but my doctors still really want me to be seen.….could you please pray that any neurologist will have compassion to take on my case (I’ve been waiting 10+ months). This tremor in my right hand has been so difficult with everyday tasks….in addition to the weakness, it continues to be challenging to hand letter. �� All these past pieces I’ve lettered/shared here are old ones I saved..

There’s a passage from Isaiah 49 that has been so encouraging to me. The Lord says, “Can a woman forget her nursing child, that she should have no compassion on the son of her womb? Even these may forget, yet I will not forget you. Behold, I have engraved you on the palms of my hands (vs. 15-16).

This latest trial seems like it will never end. I know God is faithful and will help me through this deep valley, but it doesn’t make this any easier.. I’m so thankful God will not forget me—he is sustaining me day by day. And I’m continually praying that I will trust him and rest in his promises.

Please pray that my doctors will have wisdom to find answers for this new muscle weakness and pain. Pray that I will not worry about the future but continue to walk by faith. Love you, friends. ❤️

October update

Wed, 23 Oct 2024 00:40:34 GMT

There is hope in every trial

For I can trust the Lord

He will turn my heart towards Him

And help me bear the thorn

So, in faith, I follow Jesus

On the road not understood

For I know that He is working

For His glory and my good

-CityAlight

Hi, friends,

I would so appreciate your prayers. Since getting back from my family’s trip to Hawaii, I haven’t been feeling well at all with really bad muscle weakness, fatigue, and pain. ��

I’m so weak which makes it challenging to walk at my normal speed and do my day-to-day activities. The fatigue is so great (I go to bed at 7 pm and don’t get up the next day until around 10:30-11:00 am). The pain is out of this world, too, and it’s very difficult to concentrate/focus. ��

I saw a couple of my doctors recently and had a bunch of labs drawn. At first, we weren’t sure if the weakness was from my platelets dropping the last 2 months (my latest platelet check looks much better than before, though).

One specific lab came back really high which indicates there’s a lot of inflammation in my body. My PCP thinks it’s due to fighting a viral infection that I caught on vacation. I wish this had an easy fix, but he said we have to give it time to go back down.. And he’ll consider other treatment options if I don’t improve within the next several weeks..

It’s been incredibly rough feeling so crummy each and every day while waiting for my strength to return. My PICC line has also been itching a ton, and the MCAS medication for it hasn’t been helping like it used to. ��

Could you please pray that all this inflammation and stress on my body doesn’t cause me to go into another bad mitochondrial crash? I really don’t want to have to be admitted to the hospital.. ��

Thank you all for always being there for me through the ups and downs of life. ❤️ I am so blessed to have numerous prayer warriors like you!!

More Hard News

Sat, 14 Sep 2024 00:48:23 GMT

"Weeping may tarry for the night,

but joy comes with the morning."

Psalm 30:5

Dear friends,

I received some more hard news these last few weeks, and I would be ever so grateful for your continued prayers. ��

I shared in my last post that one of my doctors referred me to a movement neurologist for my tremor. Well, the referral was rejected once again, and when I was told that, I burst into tears. I just feel so alone when doctors don’t want to see me. :’( And it breaks my heart when I’m not able to get help for my symptoms just because I have a “rare disease they don’t treat.” I’m trying to give this movement neurologist the benefit of the doubt—maybe there’s an actual review board that looks at referrals before sending them off to the appropriate sub specialty. So maybe my referral never even reached this specific neurologist? I told my physical therapist who’s been part of the movement disorders team, and he is going to try to get in touch with the dr. and advocate for me. I don’t know what to do if he still won’t see me. I even tried to see a movement neurologist from a different healthcare system (outside of OHSU), but he isn’t accepting external referrals. ��

I heard back from the metabolic geneticist. She was able to talk with the biochemical geneticist in Colorado, and sadly, he doesn’t have an IRB (institutional review board)-approved protocol yet which is needed to start the proteomics research study. I’m waiting to hear if he gave her an estimated timeline..

On top of all this, my port site started getting tender, swollen, and bruised. We don’t know what’s causing this since my labs are perfect, but we’re praying the site doesn’t develop an infection later on. Because my port site started looking worse these last few days, I have to stop using my port, and my GI dr. ordered a PICC line to be placed urgently. �� My heart is so weary from dealing with one thing after another. ��

Needing a PICC again is a huge disappointment because my family and I are going to Hawaii in 3 weeks to celebrate my parents’ 40th wedding anniversary. And all these months leading up to it, I was so excited to take advantage of having a port vs. a central line—one can swim with a de-accessed port. Now that I have to get a PICC, I can’t swim or even try snorkeling. �� You’re probably thinking to just enjoy being in Hawaii! Yes, I am SO happy that we’ll get to all be together as a family. But I’m also sad, too, at the moment because this is just another reminder how difficult it is to live daily with such a rare disease like mito.. I wish for just one day that I could have a break from all medical things. That’s why I continually long for Heaven. I will no longer have a broken body!

I don’t know why this couldn’t have happened until after our family trip. �� But one thing I do know—God wants me to keep trusting Him even through the numerous questions. ❤️

My heart was so encouraged through Lysa Terkeurst’s recent words, “If we stand firm on His goodness and know everything He allows is somehow flowing from that goodness, then we will have a lot less fear in trusting Him. Faith in God means being assured of His goodness even when what He allows doesn’t feel good, seem good, or look good right now.”

There are other medical issues going on which I will share in a future post. But, in the meantime, I’m trying to entrust all things to God’s loving care. “Therefore let those who suffer according to God’s will entrust their souls to a faithful Creator while doing good” (1 Peter 4:19). ❤️

Hard News

Sat, 24 Aug 2024 01:01:23 GMT

"Share in suffering as a good soldier

of Christ Jesus."

2 Timothy 2:3

Dear friends,

This was a hard post to write, and I’d really appreciate your prayers.

I received my whole genome sequencing results, and I’m saddened to say that a molecular cause was not found. �� In other words, I have a confirmed Mitochondrial DNA Depletion Syndrome based on 2 muscle biopsies, but the doctors still cannot find the genetic mutation causing my mitochondrial depletion. It’s discouraging that my case is so rare. I saw my metabolic geneticist, and she came up with a plan.

She recommends that I apply to the Undiagnosed Diseases Network through the NIH (I am “diagnosed” but also “undiagnosed” at the same time). There are multiple clinical sites throughout the US (the closest being Seattle). The UDN researches patients’ DNA to try and find new gene mutations, but they unfortunately don’t accept every single applicant..

She is also trying to get in touch with a biochemical geneticist at Children’s Hospital of Colorado who is running a research study called proteomics. I don’t totally understand it, but similar to genomics (the study of genes), proteomics involves the study of proteins in cells. If there are any abnormal proteins found in the mitochondria, then this information could help guide them to look closer at a specific gene. This geneticist in Colorado might only be accepting certain patients, though, so she hopes to get in touch with him for additional information..

Some more hard news is that I received my sleep study results. It was quite a shock to find out that I was diagnosed with Central Sleep-Disordered Breathing. Central sleep apnea is different from obstructive apnea in that the brain doesn’t send proper signals to the muscles that regulate breathing. During the study, I stopped breathing 91 times. �� I didn’t even hit the “deep sleep” stage, so it was noted that my numbers were likely underestimated. I had a long appointment with my sleep specialist yesterday, and we’re going to try a type of ventilator at night again, along with possible medication assistance to “glue” together my fragmented sleep. It will be a lot of trial and error..

These last several weeks, it's been rough dealing with my neurological tremor symptoms. �� We think it’s due to not getting sufficient sleep. I mentioned in past posts that the neuromuscular clinic declined to see me as a patient, but I was hopeful they would change their mind after my PCP talked with them. Well, they still rejected me which was disheartening since OHSU is the top hospital in Oregon. �� One of my doctors referred me to a movement neurologist for my tremors. Movement neurology is a different sub specialty than neuromuscular medicine, so I’m waiting to hear if he’ll accept me.. This doctor actually goes to my church, so we’re praying I can get some help.

On top of all the above, my pain dr. recently shared some concerning news. She didn’t want to scare me, but she explained that there’s a newer law in Oregon where pharmacists can sometimes override a doctor’s prescription and not fill pain medication. �� My leg pain has been so severe lately, and I was shocked by this news that it could possibly get harder for my pain meds to be filled in the future. She also said it’s so sad that a few “bad apples” (people who abuse drugs and overdose) can ruin the “whole basket.” Yet another issue to leave in God’s hands and entrust to Him..

The Lord in his loving kindness sent some timely encouragement through Randy Alcorn’s recent blog post: “ God Knows Exactly What Suffering He’s Called Each of Us to Endure .” It was so good, and I hope you read it as well. ❤️

Even though these test results were not at all what I was expecting, it’s not a surprise to God. He is faithful as I continue walking on this path set before me, and I thank him for the grace he sends to help me persevere each day.

I would so appreciate your prayers for the following issues:

1. That the Undiagnosed Diseases Network could accept my case and be able to research my genome and isolate the gene mutation causing my depletion.

2. That the biochemical geneticist in Colorado would be open to letting me be a participant in his proteomics research study.

3. That the treatment for my central apnea helps and that I will be able to tolerate the ventilator and/or medication.

4. That the movement neurologist could treat my tremor (it’s challenging to do my hand lettering art with such shaky hands). I did hand letter the above verse by using one of the new techniques I learned from my neuro-occupational therapist, but it’s still not the easiest.

5. That I will continue leaning on God and not lose heart. It’s been a long and weary journey with lots of waiting these last 14 years, but the Lord is walking beside me every step of the way.

Thank you so much for your love and support, friends. ❤️

July Update

Sat, 06 Jul 2024 00:49:09 GMT

Cast your burden on the Lord, and he will sustain you.

-Psalm 55:22-

Hi, friends,

I read this recent quote by Joni Eareckson Tada, and I wanted to share it with you. I hope it’s an encouragement. ❤️

“Our needs can never, ever outpace the resources of Christ. The same Jesus who promises to be our strength is the same one who upholds all things, even the universe—he upholds it all by the power of his word.”

I so resonate with all that she writes because she is such an example of someone who continues to trust Jesus through the hardest of times (quadriplegia, cancer twice, severe chronic pain, countless bouts of pneumonia, and more).

For me, it’s challenging not to be overwhelmed by the future and what may happen down the road. There’s currently no cure for Mitochondrial DNA Depletion Syndrome, and the pain in my legs has been so rough lately. �� We’re not sure why, but they especially hurt in the mornings. I did have my lumbar sympathetic nerve block in the middle of June, but it sadly didn’t give significant or lasting pain relief which was a disappointment.

Maybe through the years, Joni had the same thoughts like me about the unknown road ahead, and yet, she continues to be a real-life testimony of faith in Christ in the midst of difficult circumstances. She has now suffered with quadriplegia and all that comes with it for more than 55+ years, and each day, God has sustained her.

This month marks 14 years (��!!) since my health trials really started, and I know the Lord will continue to supply me with all that I need for the long journey (whether physically or emotionally or spiritually). It’s good to remember that nothing is too much or too hard for him. Jeremiah 32:17 says, “Ah, Lord God! It is you who have made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you.” Just 10 verses later, God reminded Jeremiah, “Behold, I am the Lord, the God of all flesh. Is anything too hard for me?” ❤️

In May, I saw a metabolic geneticist at OHSU, and we started the process for me to get whole genome sequencing done. You may be wondering why I still need genetic testing after more than a decade.. I have a proven mitochondrial DNA depletion shown on 2 separate muscle biopsies, but we still can’t find the molecular cause. It’s disheartening that my case is so rare. ��

My last extensive genetic test (whole exome) was back in 2015, so to have my entire genome studied is very exciting. At the same time, even though this test is so broad (and costly), the diagnostic rate is still less than 25%. But we think it’s worth getting done because having a molecular diagnosis could make me an eligible candidate for a clinical trial. Without a confirmed DNA mutation, I can’t enroll in one. �� I am part of an online mitochondrial FB forum, and there are some patients on the trial who have shared that it helps them immensely! Could you please pray that, if God wills, my whole genome test can supply some much needed answers?

In my last post, I wrote about an appointment I had scheduled with a new neurologist in June. But then, I shared that doctor was going to be out of the clinic, so I had to wait and see his colleague at the end of July. Well, I received a call from his office today, saying that they were going to cancel my appointment because “they don’t specialize in mito.” �� Even though I read on their OHSU page that “mitochondrial myopathy” is one of the conditions they treat... I’ve been waiting 4 months to see a new neurologist locally so that I don’t have to keep going up to Seattle. So it was incredibly discouraging and frustrating that I keep getting passed around by doctors because I’m “too complex.” What I would give to have a condition that was easily treated or studied. ��

In the midst of these ongoing challenges, I pray that I will surrender all and take up my cross daily, knowing that God’s grace is sufficient in all things. I know he will use these continued trials to mold and shape me! Thank you so much for your continued prayers. ❤️

Leaning on God ❤️

Kerissa.a.lee@gmail.com (Kerissa Lee) — Sat, 01 Jun 2024 01:37:01 GMT

Hello, friends,

It’s hard to believe it’s been almost 3 whole months since the day I came home from the hospital. I’m so grateful to God for each day here. It hasn’t been the easiest road since discharge (which I’ll tell you about below), but it truly has been a gift simply staying home. ��

At some of the recent follow-up appointments with my doctors, we discussed how this is the 6th time I’ve experienced sepsis in less than 10 years. �� Yes, the body does recover from each episode of sepsis, but as my GI specialist explained, organs become more damaged in the long run as time goes on.. Each bout seems to get harder and harder to fight, and I dread the next time it happens. ��

It’s hard not to think about all the “if only” scenarios. For example, if only I didn’t have renal magnesium wasting, then I wouldn’t need a port. Or, if only I didn’t have a port, then I wouldn’t experience blood infections/sepsis. Or, if only I didn’t need a port, then I could have a spinal cord stimulator implant again for the chronic pain and get off all the pain medications.

But, if all those “ifs” came true, I don’t think I would lean on God as much! Psalm 119:71 says, “It is good for me that I was afflicted, that I might learn your statutes.” I love what Joni Eareckson Tada wrote in one of her books regarding difficult times, “Suffering has a way of heaving you beyond the shallows of life where your faith feels ankle-deep. It casts you out into the fathomless depths of God.” ❤️

I recently saw my nephrologist (kidney doctor). She ordered a bunch of tests to check up on the renal magnesium wasting. My body doesn’t hold onto magnesium well….that is, my kidneys excrete too much magnesium which is why I need chronic IV access to receive infusions of high dose magnesium. Anyways, the results of these recent tests show that it hasn’t improved at all. It also shows a decrease in kidney function which she says we’ll need to continue monitoring.

My hand tremors have sadly worsened since my hospital stay—it’s challenging to do any hand lettering/calligraphy now (which always requires very controlled fine motor skills). In fact, all of my art that I’ve posted with each of these last several blog updates are older pieces that I’ve never shared before.. The tremors make it hard to hand letter any new pieces.

My hand therapist referred me to a neurology-focused occupational therapist at OHSU which I’ve been waiting many weeks for. My first appointment is finally coming up on June 5th, and I pray that she will have some solutions to help me keep doing my favorite hobby. I’d appreciate prayers for this issue! I definitely don’t want to lose my lettering skills. ��

Speaking of neurology, I’ve also been waiting many months to see my new neurologist. I had an appointment scheduled with him on June 13th, but I just found out he will be out of the clinic that day. So now I’ll be seeing his colleague, but that appointment isn’t until July..

Same with my EMG (electromyography) study. One of my doctors ordered this specific test to check the signals of my nerves/muscles, and it was scheduled for the end of June. But the physical medicine specialist who will be doing the EMG will also be “out of the clinic,” so now the test got pushed out to the end of July. I wish doctors didn’t reschedule out of the blue. �� It’s hard not to get frustrated, but I have to remember that even the timing of each appointment/test is in God’s hands. ❤️

I have a bilateral lumbar sympathetic nerve block procedure scheduled in the middle of June because the deep leg pain has worsened which makes it so hard to bear. The pain was not bad when I got discharged from the hospital in March, but then it started ramping up in April. My last nerve block was done several years ago, and the pain relief only lasted half a day or so. Could you pray that this upcoming nerve block will be effective and long-acting?

Thank you so much, friends. I’m so grateful for you! ��

Part 4 ❤️

Fri, 10 May 2024 02:15:27 GMT

Read Part 1 , Part 2 , or Part 3 if you missed it.

| Part 4 |

That evening on February 20th, I was transported by ambulance back to the 14C medicine floor. It was such a scary time. �� The sepsis caused my body to go into metabolic acidosis. So they quickly treated that with IV bicarbonate and started me on broad-spectrum IV antibiotics while we waited for my blood cultures to come back. I became leukopenic and anemic because my bone marrow got affected. �� This infection wreaked havoc on my kidneys so I continually had to be repleted with large amounts of IV electrolytes (especially potassium) each day. My blood cultures from my port ended up growing Staph Epidermidis. Knowing the cause of my symptoms was an answer to prayer, and the infectious disease doctors immediately started me on an IV antibiotic sensitive to that specific strain of bacteria.

I was admitted for 5 weeks + 1 day (the total from not only this stay for sepsis but also when I was admitted for the mitochondrial crash). Being in the hospital for 2 difficult diagnoses that happened back to back was the hardest thing I’ve ever experienced. I thank God for how he graciously gave some happy times in the midst of it. I loved seeing the therapy dog and was over the moon when the medicine floor kindly let my family bring my brother’s dog to visit me. �� I also had some amazing nurses. There was a special night nurse assigned to me, and I’ll never forget him. Even when he was no longer part of my care team, he came to visit me each night he worked—isn’t that so sweet? ��

But for the most part, inpatient life was scary and traumatic. And as I pondered these last few months, trying to make sense of it all, I was reminded of several things:

God never abandoned me in my darkest hour. ❤️ Being inpatient for weeks was brutal and like a prison (not once did I leave my hospital room because I had no energy). All those days, doctors, residents, medical students, phlebotomists, pharmacists, IV therapists, dietitians, respiratory therapists, CNAs, and nurses would continually come to my room. Not to mention every time medications were given or IV bags had to be started/stopped or when the multiple pumps alarmed. The exhaustion along with the pain was unreal. I felt so weak and helpless, not just physically. This challenging time reminded me that I cannot do life without Christ. Jesus said, “Apart from me you can do nothing” (John 15:5). And that is so true. During this whole trial, the Lord was the sustainer of my days. He gave me his strength, minute by minute.

Even though God always supplied me with grace to carry on, I want you to know that I still struggled with great fear while in the thick of it. When the pain and suffering overwhelmed me, it was difficult at times for my eyes to see him working behind the scenes. Numerous questions weighed heavily on my shoulders, and I felt so alone each day. But as I processed everything, this trial reminded me that no one knows and understands my suffering more than Jesus. ❤️ Matthew 8:17 says, “He took our illnesses and bore our diseases.” Isn’t it so comforting that Jesus knows what we’re going through? Even he had questions when he cried on the cross, “My God, my God, why have you forsaken me?” (Matthew 27:46) So when I experience doubts and questions in the future (whether in the hospital or at home), I pray that I will always take them to the Lord and not hold everything in. I’m definitely still a work in progress, though..

I wanted to close this mini series of posts by sharing a verse from Psalm 31:7 (ESV). What a coincidence that I’m 31 years and 7 months old! ��

“I will rejoice and be glad in your steadfast love, because you have seen my affliction; you have known the distress of my soul.”

This verse sums up these last few months. God always sees my pain, and I’m never alone (even though it may sometimes seem like it). He has “known my soul in adversities,” as the New King James translation says of vs. 7. I praise God for his faithfulness and mercy on my life. I also want to give thanks to him that I’m back off the TPN (IV nutrition) and able to eat orally again like before! My muscle weakness has improved as well. �� There are some other concerning issues going on, but I will share a more in-depth update later..

Thank you for reading Parts 1-4 and continuing to pray for me. This has been quite the journey, and I’m so grateful to have such faithful prayer warriors!! ��

Part 3 ❤️

Sat, 27 Apr 2024 01:10:35 GMT

Read Part 1 and Part 2 if you missed it.

| Part 3 |

After numerous days inpatient, I was ready to begin physical therapy at home and work my way off the TPN (IV nutrition). On February 19th, I ended up getting enrolled into a fairly new 1-year old program called “Hospital at Home.” It’s a weird concept, but those who do HAH are still considered inpatient—the only setting that’s different is you can sleep in your own bed and the nurses come to your home. You also are connected to doctors virtually through a tablet. In theory, that probably sounds amazing, but for complex patients like me, I regretted doing HAH because it was complicated and stressful.

For example, the leg pain was still so severe, and each time I took pain medicine every 2 hours, I had to log onto the tablet and talk to the nurse who charted everything…. Even during the middle of the night, I had to show the nurse which meds I was taking and what dosage. It unfortunately wasn’t restful, and there were a bunch of other challenges while I was with HAH. By the next morning, I was definitely ready to be discharged from the “hospital” since a lot could be done outpatient. Around 11:45 AM on February 20th, a nurse practitioner came to my house to make sure I was medically stable and ready for discharge. She agreed I was because my vitals were perfect.

She left, and another nurse was scheduled to arrive sometime in the afternoon to stop my TPN for the day. But, in the blink of an eye, things changed yet again and the nystagmus suddenly came back with a vengeance. I could barely see out of my eyes (because they shook so much), and when I went to lay down, I asked my mom if the heat was on. She said yes, but I felt soo cold. When the last nurse arrived to stop the infusion, she took my vitals which showed that I spiked a high fever out of the blue. I was so devastated by this turn of events and cried, “I can’t do this again.” �� I felt weary, down to my very bones. Experiencing all my usual sepsis symptoms (fever, chills, high heart rate and respirations, severe low back pain, etc.), I hit rock bottom and was extremely distressed that I had to go back to the hospital. ��

While the doctors scrambled to find a bed available for me, I physically got even worse. During that scary and emotional time, the nurse was so compassionate and caring. I know God in his loving kindness handpicked her especially for me that day. She stayed right by my bedside and encouraged me with words filled with hope. �� She saw a devotional by Joni Eareckson Tada on my nightstand and asked if I was a believer. I nodded, and she immediately began praying for me. ��❤️

In the midst of this whole trial, some days God felt far away. �� I could really resonate with the psalmist’s cries—“Why are you so far from saving me, from the words of my groaning?” (Psalm 22:1) But when my nurse prayed for me, it was in that very moment I felt God’s presence and peace so near. It was like he knew I needed some tangible comfort to hold on to. I felt so seen and loved by him. I’ll never forget the sweet nurse he sent and the prayers she lifted up. ❤️ Through her, the Lord revived my soul to prepare me for this latest battle.

Up next: Part 4…

Part 2 ❤️

Tue, 16 Apr 2024 01:30:21 GMT

Read Part 1 if you missed it.

| Part 2 |

Just 2 days after I was discharged from the hospital, I started experiencing severe nystagmus (shaking eyeballs) along with nausea, vomiting, and retching. I didn’t know what was happening and was again so scared. �� I was told to go to the ED since I wasn’t tolerating any of my oral medications. The doctors gave me IV fluids and lots of different IV anti-nausea and pain meds. They told me I needed to be admitted and talked with the neurology and internal medicine departments to see which one should admit me. But….to my dismay, both teams made a bad judgment call when they decided not to have me admitted (my mom has since talked with a patient advocate for guidance on what to do if “this” happens again). Even the ED observation unit didn’t want to take me because I was “too complex.” ��

I was sent home still vomiting and in so much distress (with mitochondrial disease, anything like untreated vomiting/diarrhea is a big “no-no” to put it simply because it’s a huge stress on the metabolic system). My body was really struggling, and I experienced very drooping eyelids and worsening weakness all over. The next day, I was seen by my PCP’s colleague, and after much discussion, he directly admitted me to the internal medicine floor. I’ll always be grateful to him for his quick action and the very thorough letter he wrote. There were sadly no beds available, so I waited at home. But, the following day, God was so kind to bless me with a private room that became available.

Once I was inpatient, the doctors tried to get a handle on the nystagmus and vomiting. All the usual IV anti-nausea meds didn’t resolve things, so they gave me an “off-label” medication that can sometimes help nausea. That did the trick, but another issue soon arose—I started showing signs of mental confusion. I remember not being able to explain what was on my mind, and if I did talk, it didn’t make sense! For example, 2 nurses were in my room helping each other, and I made a comment about them being married. �� Another instance, my family later shared that I asked them if they could see the ocean out the window. I can’t recall a lot of my time in the hospital because I was so confused..

My mom wondered if the confusion was from the off-label nausea medicine, so the team immediately discontinued it. By God’s grace, that did the trick…. Hospital life was definitely a roller coaster. You know that whack-a-mole arcade game? Once one problem ended, another popped up.

After not receiving proper nutrition for many days, I started trying to eat orally again and resumed j-tube feeds, but for some reason, I wasn’t able to tolerate either like before. My stomach became so huge and distended….even with the feeding pump setting of just one teaspoon per hour. It didn’t make sense, especially since I tolerated a high rate of tube feeds two weeks earlier when I was admitted for the neurological weakness. I kept trying to increase the tube feed rate, but my GI tract didn’t tolerate it. The doctors brought up the possibility of TPN (IV nutrition). I was very discouraged and so homesick. With no progress increasing the formula rate, I did in fact have to be placed on TPN. Emotionally, it was a struggle dealing with this new problem on top of the mitochondrial crash.. ��

Up next: Part 3…

Part 1 ❤️

Sat, 13 Apr 2024 01:44:51 GMT

Dear friends,

It’s been almost 3 months since I last blogged.. So much happened, and it’s very hard to believe how quickly things changed.

I know many already know the whole story. But for those who haven’t heard it, I will try to recap here. It’s quite the tale, but I wanted to share it on my blog to look back on because God truly carried me through the unimaginable. ❤️

When I requested urgent prayer for the sudden onset numbness and weakness in my whole left leg back in January, I had a routine follow-up already scheduled with my primary care dr. on January 25th. I was so thankful I could see him right away for this new issue. I showed him my worsening weakness, and he sent me straight to the ED to make sure I didn’t have a condition called Guillian-Barre Syndrome (GBS).

While waiting for a bed to open up on the neurology floor, the muscle weakness spread to my right foot and up my right leg to the point that I could barely lift both legs up. Words can’t express how truly scared I felt that I was going paralyzed. �� It was the hardest time of my life, and I continually wept, not just because of the physical pain (which was the worst leg pain I’ve ever experienced) but also because of the emotional distress.. The “foot drop” in both feet was so severe that my soles were almost parallel to the hospital bed when laying down. It was devastating. Due to the weakness, I couldn’t even walk to the bathroom and had to use a bed pan. The team was concerned about possible heart/lung issues, so I had to be placed on a continuous cardiac telemetry monitor (which is different than the standard one). Twice, they asked me if I’d be okay with life-saving measures like getting intubated (placed on a ventilator) if the weakness kept spreading like it was..

I underwent countless neurological exams by nurses, medical students, residents, and attending neurologists. To rule out GBS, a spinal tap had to be done as well as extensive brain and spinal MRIs (cervical, thoracic, lumbar, and sacral). Not feeling well, it was incredibly difficult to lay in the very narrow MRI tube for more than 2 1/2 hours without a break. When GBS was ruled out, we still didn’t know what was causing the weakness. To be honest, in a way, I WANTED to have GBS because they explained GBS has a good treatment. So, not knowing the outcome and prognosis was very hard. ��

Looking back, I remember how I shared a verse from Isaiah when I wrote my “2023 reflections” blog post at the beginning of this year: “Let him who walks in darkness and has no light trust in the name of the Lord and rely on his God” (Isaiah 50:10). When I posted that on January 1st, I never could have imagined how dark life would get. I knew God had a plan, but I was still so terrified. And there was nothing I could do but trust him (even though my faith felt so weak while in the thick of it).

I cried so much and struggled with great fear. But in the midst of that dark time, I thought of a well-known passage from 2 Corinthians: “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison…” (2 Corinthians 4:16-17). A phrase stood out to me: “light momentary affliction.” This trial weighed heavily on my shoulders….it definitely didn’t feel “light” OR “momentary.” I had so many questions. Could I surrender all and trust that God has my best interests at heart? I prayed that he would grant me the eyes to see everything from an eternal perspective and use this hard time for his glory and good purposes.

After spending 9 days on the neuro floor, I was sent home.. The neuro team attributed this whole event to a “very unusual mitochondrial crash.” And only time would tell how I would recover.

Up next: Part 2…

Urgent prayer request ❤️

Tue, 23 Jan 2024 01:08:14 GMT

Hi, friends,

I had a whole other post ready to go with some good news, but instead, I have an urgent prayer request. I started experiencing sudden onset numbness, tingling, and weakness in my whole left leg, and it’s been so scary. �� It just came on out of the blue. I was doing so well with physical therapy each week (able to walk fast on the treadmill and leg press 40 lbs), and now, I have to limp because my left leg is soo weak.

I really want to avoid the ED as much as possible, so I saw one of my doctors today. She’s concerned I’m having a big motor nerve issue. �� The plan is to see a physical medicine specialist, have a nerve conduction study, get an urgent MRI done, as well as see my PCP and pain doctor on the 25th and 29th for further evaluation/testing. I know I already said this, but it really has been so scary to lose function so quickly. Can you pray that I will trust the Lord and not worry? It’s been very hard, so I’d really appreciate your prayers and support in the coming weeks. Thank you so much. ❤️

Reflections on the year 2023

Mon, 01 Jan 2024 02:15:08 GMT

"Let us know; let us press on to know the LORD; his going out is sure as the dawn; he will come to us as the showers, as the spring rains that water the earth."

Hosea 6:3

Dear friends,

If you’ve been a long time reader of Pain With Purpose, you probably know my tradition of writing a post reflecting on the previous year. �� Get ready….this will definitely be my longest post in a while!

Compared to 2022 (which had no surgeries, hospitalizations, ER visits, or infections!), 2023 was a doozy. Looking back, I believe the Lord in His providence was giving me a nice long, stable break in 2022 to help prepare me for this past year. ❤️

God answered our prayers in that I was physically able to have a part in my brother Curtis and Courtney’s wedding in February. I had so much fun using my hand lettering skills to create all the wedding signage for them. Living with chronic health issues for the past 13+ years, I sometimes can feel stuck where it feels like you’ll always be known as the “sick person.” So it was such a blessing to join in the wedding festivities like a healthy, “normal” human being and just have fun as a bridesmaid! Truly a gift from God! We all have special memories we’ll never forget from that beautiful day. ��

But, things started going downhill the following week. *Note: any sentence/paragraph you read in asterisks means the issue is ongoing.*

-Just 3 days after their wedding, I battled sepsis for the 5th time because my central line had a tiny hole in it (from old age) where bacteria got in. I underwent bedside surgery to get that infected line removed and have PICC line #1 placed. In addition to the many fevers, chills, vomiting/retching, severe nystagmus, and intense body pain, my multiple IVs in both arms kept blowing/infiltrating from all the heavy duty IV antibiotics and medications—it felt like my veins were being shredded. ��

-I caught a bad GI infection (C-DIFF ��) on top of being septic due to all the hospital germs. ��

-Had surgery in April for a port-a-cath placement below my collarbone. My PICC line was removed, and I also had my j-tube replaced to a new one.

-One week later, I had a severe allergic reaction to the surgical glue over my port incision. Had to go to the ED to get PICC line #2 placed.

-About 5 weeks later, my port incision was healed well enough to get my port re-accessed and my PICC line removed once again.

-Soon after that, my somewhat new j-tube got stuck in the wall of my abdomen. Had to get it removed and have another one placed again. My general surgeon experienced great difficulty removing it, though, so she basically had to yank it out which was so traumatic—I bled a lot and burst into tears. ��

-Due to that traumatic procedure, my abdomen started developing a huge abscess. My mom had to take me to the ED at 3 AM in August because of horrendous abdominal pain. I had to undergo bedside surgery to have the abscess opened up and get a drain placed.

-My port site also started developing another allergic reaction around the same time, so I had to get PICC line #3 placed.

-The abscess got even worse which required multiple visits to my surgeon’s office. The resident had to flush more of the pus out and pack gauze into the incisions since the drain wasn’t helping.

-I was prescribed high dose antibiotics, but they ended up causing neuro-toxicity symptoms. One symptom I experienced was hyperkinesia—I had to constantly keep moving, and it was terrible during the night!

-The area next to my j-tube never healed properly after the abscess was gone, so my doctors referred me to the wound care center. *I continue to see them every 2 weeks because the skin does not have healthy tissue and is also so raw and painful. It hurts terribly when I eat acidic or spicy foods because bile leaks around my tube and burns the area even more. I have to get a 3rd j-tube replacement soon..* ��

-In September, my legs started aching constantly.. I’ve had small fiber neuropathy for many years now, and that pain feels like your feet are burning and on fire. When this deep, bone-like aching pain in my legs began, it was very hard to experience on top of the nerve pain. �� *The deep aching leg pain together with the neuropathy still continues to this day. Sometimes my arms ache as well, and I just feel miserable with so much going on.*

-Every major infection and allergic reaction I dealt with throughout the year caused my mast cell activation syndrome (MCAS) to go haywire. Mast cells are immune cells that protect our bodies from pathogens and allergens. I sadly had constant reactions to the adhesive dressings over my PICC line, and my infusion nurses exhausted all hypoallergenic options. *I now have to have twice a week PICC dressing changes because my PICC site gets all inflamed/burned from reacting to everything (even cotton gauze under the dressing). The rash/itching is terribly aggravating day and night because I can’t scratch underneath the PICC dressing. The goal is to use my port once again and stop using the PICC (especially because PICCs aren’t a long term option, and time is ticking), but it can’t happen until my MCAS is more under control.* ��

-In December, I sought a second opinion with another mast cell specialist a few weeks ago, and she agreed that my severe leg pain and other current symptoms are due to inflammation from the MCAS flare-up. *She started me on a treatment, but I will share an update on that another time.*

As you can see, there were some very dark days in 2023. �� When something new always happened on top of everything else, it got so overwhelming. I cried out to God many times, saying, “I can’t do this without Your strength. I need you, Lord!” And you know what? God heard each and every prayer. This verse came to mind from 2 Timothy 4:17: “But the Lord stood by me and strengthened me, so that through me the message might be fully proclaimed and all the Gentiles might hear it. So I was rescued from the lion’s mouth.” Every dark day…every time there was bad news…every moment when the pain was so heavy to bear, God armed me with the grace and strength to “share in suffering as a good soldier of Christ Jesus” (2 Timothy 2:3). And with His help, I made it through a rough year.

I don’t know what will happen in 2024. Maybe there will be even more dark days. But, no matter what happens ahead, Isaiah 50:10 reminds me, “Let him who walks in darkness and has no light trust in the name of the Lord and rely on his God.” So, as I pick up my cross daily this new year, I pray that I will keep trusting in the Lord and continue running with endurance the race that is set before me (Hebrews 12:1).

To close, I want to give thanks and praise to God for how He always stood by me and strengthened me through the highs and lows of 2023. He never abandoned me. He is a faithful and compassionate God! I also want to thank all of YOU who have stood by my side and lifted me up with your steadfast prayers. ❤️ I am so humbled each time you say a prayer on my behalf or like/comment on my posts with such caring words. Your love and kindness blesses me time and time again! ��

Happy New Year!

Love, Kerissa

Please pray ❤️

Mon, 11 Dec 2023 02:28:09 GMT

"This hard place in which you, perhaps, find yourself, is the very place in which God is giving you opportunity to look only to Him."

Elisabeth Elliot

Hi, friends,

I wanted to share an update on the last few weeks. Thank you so much for continuing to pray for me—I’ve been really needing each and every prayer lately. ❤️

Sadly, my legs have still been aching terribly all day every day, and it gets so overwhelming to bear this deep aching pain on top of my regular small fiber neuropathy. �� It’s very difficult to focus because the pain is unrelenting, and my pain meds only bring it down maybe 1-2 points. There have been a lot of tears in private, even writing this. :’( We are still trying to figure out what’s causing the leg pain—I have a few big appointments with specialists this month and next.

Sleep is rough and restless with the pain, and on top of that, my PICC line continues to itch terribly every day and night from the mast cell disorder (MCAS). I have to often get ice in the middle of the night more than once because that’s the only thing that helps the itching to calm down. It’s just hard to have a sterile adhesive dressing over my PICC line and not be able to scratch underneath it (since it has to stay extremely sterile). �� I have a second opinion with a specialist this week for the MCAS.

Last week, I had a one year follow-up with my neuro-ophthalmologist to check up on the chronic progressive external ophthalmoplegia (CPEO) caused by my mitochondrial DNA depletion. It’s always a little disheartening when my doctor examines my eyes because it reminds me that I can’t look different directions like healthy people. This eye muscle paralysis makes it a challenge to see certain things (normally, one would just move their eyeballs a specific direction, but I can’t). I thank God that I still have my eyesight and that most people can’t tell I have CPEO. There’s a mitochondrial disorder called Leber’s Hereditary Optic Neuropathy that causes blindness, and I’m so thankful I don’t have that. I hope sharing all this is bringing awareness to how bad mitochondrial diseases are. ��

I also had an appointment with the OHSU wound care center last week for the raw, painful area near my j-tube (caused by that abscess in August). I’ve been waiting numerous weeks to see them! They were very compassionate. The specialist prescribed something I’ve never tried called a “liquid wound dressing.” I see them again in 2 weeks, and if there’s still no wound healing, he’ll try some other things.

On top of all the above, I started experiencing joint pain in some of the knuckles of my right hand. I wish it was my left hand instead because I use my right to hand letter. We’re wondering if this new symptom is possibly connected with the leg pain. So I have to get some tests done for that. When this started, I kept thinking of Joni Eareckson Tada (an amazing example to me!). If she can paint so beautifully while being a quadriplegic, I can surely create lettering art with hand pain. ��

I mentioned this already, but it truly has been overwhelming to deal with all that’s going on, especially during this Christmas season. �� When the pain is so bad and I can’t sleep, I think of the lament Psalms and keep crying out to God, “How long, O Lord?” I may have missed some, but I counted how many “how long?” questions to God there are in Psalms. There are sixteen! It’s a reminder to me that the Lord can take all our cries and questions. It’s not too much for Him. He does not forget the cry of the afflicted (as Psalm 9:12 says). Isn’t that so encouraging?

Could you please pray that I will keep trusting in God’s plan and that my faith will remain steadfast in spite of all that’s happening? I love you and am so thankful for you, dear friends. ❤️ Merry Christmas. ��

| And every prayer we prayed in desperation

The songs of faith we sang through doubt and fear

In the end, we’ll see that it was worth it

When He returns to wipe away our tears |

-Hymn of Heaven

More tests..

Fri, 10 Nov 2023 02:53:11 GMT

"I wait for the Lord,

my soul waits, and in his word I hope."

Psalm 130:5

Hi, friends,

I just wanted to share how the appointment with my GI specialist went this past Monday. Thank you so much for praying about it. ❤️

After giving him an update on all that has happened, I’m happy to say that he is being very proactive about the high liver enzymes that are showing up on my blood tests the last 8+ weeks. I get 5 blood tests drawn every single week when my home health nurse comes to change my PICC line dressing. Well, my GI dr. ordered 10 additional blood tests on top of the original 5!! He also placed an order for an elastography scan which is a specialized ultrasound that grades how stiff the liver is—when there’s scar tissue, the liver gets stiff. The more scar tissue there is, the stiffer it becomes. Unfortunately, they’re booked out, so it can’t be done until next month..

I asked him if my high liver enzymes could be from not being able to take my Wilson’s Disease medication (the one that helps chelate copper out of my liver which has been back ordered for many months). In his opinion, he doesn’t think so because symptoms from Wilson’s slowly develop over time and not this fast. But, he did say my case is so complex and that I’m “one in a million.” �� These high liver enzymes could be from the Mitochondrial DNA Depletion Syndrome….it could be a reaction to a medication or from the antibiotics I took for the abdominal abscess…it could be from my mast cell disorder…or he could be wrong and it IS from Wilson’s…! He just doesn’t know yet, and since things are always so complicated with me, all these tests he ordered may or may not give an answer.. ��

In other news, I’ve still been dealing with a high heart rate every now and then. I thought the IV iron infusion I received would have helped, but it hasn’t. �� Around midnight last night, my heart was beating fast which made it hard to sleep. I got up and put my Apple Watch on which showed a heart rate of 120 bpm. I remembered that the watch has the ECG feature, and imagine my surprise when it showed an episode of Atrial Fibrillation! Thankfully, I had a virtual visit with my PCP earlier today, and he looked at the Apple Watch ECG report…he did see A-fib on the results. He wants to further investigate and ordered a ZIO patch. This device will record any heart rhythm events for 2 weeks. I really don’t want an official diagnosis of Atrial Fibrillation on top of everything else going on. ��

Waiting for appointments and scans and results and blood tests…it’s hard to do, especially when I’m not feeling the best. I wish I could have answers right away.. But over the years, I’ve learned that God’s timing is best—truly, my times are in His hands (Psalm 31:15). I think of that verse from Isaiah which says, “From of old no one has heard or perceived by the ear, no eye has seen a God besides you, who acts for those who wait for him” (Isaiah 54:4). So, with God’s help, I will continue waiting…waiting for Him to act but also thanking Him that my life is in His hands, no matter how difficult my challenges become. ❤️

A weary road

Mon, 30 Oct 2023 01:20:34 GMT

"For I will satisfy the weary soul, and every languishing soul I will replenish."

Jeremiah 31:25

Dear friends,

Several weeks have passed since I last posted—mainly because so much has been happening in the world, our country…and here at home. �� It has weighed heavily on my heart. I’m so thankful that God is sovereign and that we can trust Him through these difficult times. ❤️

Ever since I had that abdominal abscess near my j-tube in August, I’ve been experiencing sharp, stabbing pain and inflammation in that area because the skin is raw and not happy. I had another follow-up with dermatology last week, and they referred me to the wound care clinic. Hopefully I can get an appointment soon and that they’re not booked out..

For the last 8+ weeks now, my liver enzymes have been elevated, and we’re wondering if that’s why I haven’t been feeling the greatest. My legs have been aching and burning terribly (it doesn’t feel like my usual small fiber neuropathy symptoms, though).

In addition to my Mitochondrial DNA Depletion Syndrome, I have Wilson’s Disease (a disorder that causes my liver to accumulate too much copper). This is usually well-managed by a medication I’m prescribed. A specialized form of zinc, it helps chelate (“get rid of”) copper out of my liver. BUT, it has sadly been back-ordered the last 3+ months. �� So we’re not sure if the high liver results are from not being able to take the medication….or if something new is happening. I have an appointment with my GI specialist on November 6th, and we’re praying he can figure out what’s going on.

As you know, I had to get a 3rd PICC line in August…we haven’t pulled it out and re-accessed my port yet because I’m scared the port site will once again develop a rash/welts like before. �� I did recently see my mast cell specialist, and she thinks the sepsis I had back in February caused my mast cells to go haywire. She started me on 2 additional medications, and I’m also taking so many different supplements. Nothing seems to be helping, though. My PICC dressing itches horribly every day, and the skin is all red and purple (feels like a burn). �� Could you please pray that we will have peace and wisdom to know when my port should be used again?

I haven’t been able to sleep well due to all the above issues. �� It sure has been a weary road this year, but God is faithfully sustaining me each day. As Psalm 119:50 says, “This is my comfort in my affliction, that your promise gives me life.” ❤️

The latest issues..

Mon, 02 Oct 2023 01:27:17 GMT

"The Lord upholds all who are falling and raises up all who are bowed down."

Psalm 145:14

Hi, friends,

It’s been a few weeks since I last checked in—I just wanted to post an update this evening because I’m so grateful for your continued prayers. ❤️

I did end up seeing the dermatologist at OHSU. That one incision has thankfully closed up, but it is leaving a big scar. �� Speaking of scars, I have a section of deep scar tissue from the loop drain the surgeons had to tunnel underneath the skin…it is very tender, so I’ve been trying to massage/rub it a lot to break up the hard rope-like scarring in my abdomen. Right next to my j-tube, there is a section of skin that the dermatologists are a little concerned about. It’s hard to explain, but it doesn’t look like healthy tissue. �� They prescribed a topical immunosuppressive medication and want to keep monitoring it so that it doesn’t turn into a serious skin condition that they wrote about in their chart notes. It can happen after an injury or trauma (like the abscess and bedside surgery I had). They didn’t tell me about this condition in person—I’m wondering if it’s because they don’t want to scare me? �� Could you please pray that this area near my j-tube will heal and not worsen?

Another issue going on is that I’ve been reacting terribly to my PICC line dressing site. My skin has a painful rash not just from the adhesive dressing but also from the cotton gauze and the PICC line itself (it’s never been this bad before). �� Random rashes/hives also pop up on my skin elsewhere. My port hasn’t been re-accessed yet—I’m scared the same thing will happen like before where the port site will develop a rash/welts and I’ll need a PICC again. �� I have an appointment with my immunology specialist this coming Wednesday to talk about other treatments for my mast cell activation disorder (which is what’s causing me to have an allergic reaction to so many different things)..

Lastly, I’ve been experiencing a pounding heart beat, more fatigue, an increase in headaches, and really bad aching and burning pain in my legs. I don’t sleep well during the night because my legs hurt so much, and I also feel my heart beat pound in my ears. My labs show that my ferritin level has dropped significantly. I have to get more IV iron, even though I already had several infusions 8 months ago. I don’t usually need it this frequently. ��

This has been a rough year with something new always popping up, but I’m so grateful for God’s sustaining grace. He truly supplies me with the exact amount of strength that I need for the challenges that come each day. ��

Still waiting..

Wed, 13 Sep 2023 01:16:13 GMT

I had to see my surgeon yet again yesterday because the second incision that I’ve been “packing” with gauze hasn’t been healing unfortunately, and it is now shaped like a hole. �� I can see the layers of skin inside. �� She advised that I stop packing the incision now to see if that will help—but just a couple weeks before, I was instructed by her team that packing helps an incision to heal from the bottom to the top…in other words, if one stopped packing, the skin could close at the top and leave a hole underneath.. ��

She said she doesn’t know why it’s not healing quickly like my other incision did, so I kinda feel like they’re not sure what to do.. If the hole is still not healing by the 22nd, I have a second opinion that day to see OHSU dermatology.

It’s been about 4 weeks now since the abdominal abscess started, so I’m sad that this whole ordeal hasn’t resolved still. �� Would really appreciate your continued prayers.

My pastor shared the above verse with me recently, and it was so encouraging—I just had to hand letter it! What a beautiful reminder from Psalms that God does not hold back His compassion—He gives it to us and continually sustains us each day. ❤️

Another hard trial

Wed, 30 Aug 2023 01:31:04 GMT

“My grace is sufficient for you, for my power is made perfect in weakness.”

2 Corinthians 12:9

Dear friends,

Many of you who read my blog are not on facebook/instagram, and since my last blog update, a lot has happened sadly (I often quickly post prayer requests/updates on social media because I can type it from my phone/ipad and not have to go to the desktop computer like I do when I post on my blog). All that to say, I thought I would just “copy & paste” my latest FB/IG posts here to fill you in. *For those who DO follow me on social media, feel free to skip to the end of this.. �� *

8/21: Yesterday morning was extremely hard and unexpected. I just can’t catch a break. �� I was supposed to be getting a simple PICC line placed, but instead, I had to go to the OHSU ED at 3:00 AM for debilitating abdominal pain. I was crying my eyes out from the 10 out of 10 pain, and I couldn’t get comfortable even with my home pain meds. Once there, I had an abdominal ultrasound done, and the doctors found a pretty big abscess at my j-tube site. �� My surgeon’s team had to come by and do bedside surgery to open it up and drain all the nasty fluid out—there was quite a bit of pus.. �� They decided to place a “loop drain,” so I have two incisions. �� One of the doctors told me he’s so glad I decided to come in because it could have gotten worse quickly. While there, the vascular access team was able to place my PICC line since my appointment at Providence Portland had to be canceled. This is my 3rd PICC line, my 3rd ED visit, my 3rd surgery—all in just 6 months. �� I just can’t wait for Heaven where there will be no more pain, tears, and suffering. ❤️

8/24: It’s been a really rough day (the whole past week actually). The abdominal abscess has not improved, despite having the drain in place and being on antibiotics. �� I’ve been in such horrendous pain all day and night—I’ve never experienced pain this bad in my life. When I had a stone stuck in the neck of my gallbladder back in 2021, that was rough but it didn’t even come close to this pain. ��

Because I’ve been getting worse, my surgeon’s team saw me this afternoon, and they once again had to try and flush the pus out. �� Instead of a drain, we’re now going to see if “packing” the incisions will help. If things don’t improve by the weekend, they’ll order a CT scan.

Could you please pray that my body can fight this infection and for the pain to lessen? I’m just not sleeping until after 7 AM every day because my heart rate’s been so high and I can’t get comfortable. ��

I hand lettered a quote by Elisabeth Elliot many many months ago, not knowing it would be so relevant this week: "Sometimes fear does not subside, and one must choose to do it afraid." I’ve definitely been afraid and physically/emotionally exhausted, but I’m so thankful I’m not alone in my fear. God sees my pain and walks beside me during this unimaginable situation. ��

And that brings me to today. I saw my surgeon’s team once again yesterday—she said I’m her longest and most favorite patient. �� Hard to believe I started seeing her back in 2014. Thank you all for your prayers regarding this abscess. Praise God, my abdomen is looking much better. I still have to pack one incision (it’s still draining) but not the other which I’m so happy about! I’ll be finished with my antibiotics by this weekend. For those who like knowing medical stuff, my culture results came back—it showed the abscess was caused by E. Coli. ��

We’re not sure what’s going on now, but a few days ago, I started experiencing bad nystagmus (a neurological symptom that causes shaking eyeballs). �� Whenever this happens, it usually hints to something going on inside my body.. For example, I get nystagmus especially when I have sepsis or if I go into a “mitochondrial crash.” I’ve been exhausted from all that has happened lately, so I’d really appreciate your prayers that the nystagmus is simply because I’m fatigued and not from something more serious..

I’m so blessed by your love and caring support all these years! Having you all as “prayer warriors” truly helps me bear this ongoing burden. Thank you from the bottom of my heart. ��

Another bump in the road

Fri, 18 Aug 2023 01:35:18 GMT

"The Lord is near to all who call on him."

-Psalm 145:18

Dear friends,

I would really appreciate your prayers yet again with this latest turn of events.

To recap, in February, I had sepsis from a central line infection. A PICC line was placed because my Hickman central line had to be surgically removed due to the infection. I had that PICC until April 4th, the day of my port surgery. About a week later, my port incision severely reacted to the dermabond (surgical glue), so the doctors advised I use strong antibiotic/steroid ointment over the site, stop using my port, and get PICC line #2. About a month later, my port site was healed well enough to get my PICC line pulled and my port re-accessed. Things were going great port-wise for about 2 months (I bet you can guess where this is going.. ��).

But then, several weeks ago, my site developed a small welt/rash, so I was de-accessing a day early each week to put a bunch of Benadryl gel, cream, and Active Skin Repair on it. Last week, the home health nurse couldn’t access my port and get it to flush/draw blood (this has never happened before). It took 4 pokes to get the Huber needle in the right place. We’re not sure if it’s because of that (plus the hot weather temps and/or a mast cell activation flare-up), but my skin has gotten much worse and not better as time goes on. I’m not sleeping well because it itches SO much, and I’m scratching all day, every day, wanting to rip out my port needle. ��

De-accessing one day a week to put a bunch of cream on has not been enough time to let my skin heal, so my GI specialist has decided it’s best to get PICC line #3 temporarily placed. And I’m so bummed and sad about that, especially because my arms don’t tolerate PICC lines well—I have scarring all over my upper arms from reacting to the PICC tape. �� Could you please pray that my port site will heal completely and that my arm won’t itch terribly? My GI dr. marked this as “urgent” so it’s scheduled for this Sunday at 8:15 in the morning.

I sure wish I could have a break from all this. But, even though it’s so very hard living with a mitochondrial disease and needing chronic IV access, I know with every setback and bump in the road that God is faithful and sovereign. ❤️

I love this little hymn by John Newton which I just read in my devotional last night—a “God wink” so to speak. �� It’s a perfect reminder that the Lord always sees me through these trials. ��

“His love in time past forbids me to think

He’ll leave me at last in trouble to sink;

Each sweet Ebenezer I have in review

Confirms His good pleasure to help me quite through.”

Pain and tears..

Tue, 08 Aug 2023 01:48:41 GMT

Dear friends,

Thank you so much for your emails, comments, and prayers regarding my last blog post . I’m sorry I left you all hanging on how it went.. Sadly, this j-tube procedure didn’t go well at all, and it was physically and mentally traumatizing. �� When my surgeon placed the tube while I was under anesthesia back in April, it was a different kind of tube that I’ve never had before. And we’re not sure why it happened, but it basically got stuck in the wall of my small intestine. The area was extremely raw and painful. When she and the resident tried removing this bad tube, they thought a topical lidocaine gel would be enough for the pain. She had difficulty grasping the tube with a certain tool the kit comes with, so she had to yank it out which pulled my abdominal wall and caused excruciating pain/bleeding. ��

I’ve been through hundreds of uncomfortable procedures throughout the past 13 years, but this pain was a 10 out of 10, and I burst into tears (not normal for me at all, so this shows how bad it was..). In my head, I prayed, “Help me, God!” Sobs wracked my body, and I begged the doctors to utilize a local anesthetic with a needle around the site before they inserted the new j-tube.

They comforted me with tissues and kindly agreed to numb the area, but I was just thinking how this whole situation could have been avoided if they locally numbed the site in the first place instead of simply using a lidocaine gel before beginning the procedure. ��

Tears kept falling even when I got home, as I was so emotionally traumatized. My mind continued to replay the nightmare that happened. It felt like I had an abdominal surgery, so I couldn’t walk well and had to stoop for several days.

During that time, I just wished I didn’t have to have a tube (since 2024 marks 10 years with one..). �� But then I thought of God’s goodness. I can eat all kinds of foods now, and the tube is mainly just for medications (I used to need tube feeds and could only really tolerate soft foods by mouth like baby food pouches). If there are bad tasting supplements or meds, I can just flush it down my tube. �� Whenever I have sepsis and am too sick to swallow pills, the nurses can use my tube.

Even though it was a very hard and traumatic day, I’m so thankful for God’s grace carrying me past that. Like the verse above that I lettered, I was feeling really down mentally. I know there will be more difficult days in the future, but the Lord understands what I’m going through—I am never alone. ❤️

Prayer Request for July 5th

Tue, 04 Jul 2023 02:13:48 GMT

Dear friends,

When I had my port surgery in April, I mentioned that my surgeon was also going to replace my j-tube to a new one while I was under anesthesia. Sadly, this “new” tube has been causing a lot of abdominal pain, and the pain has gotten especially bad these last several days. The tube is most likely stuck in the abdominal wall (I had this same issue called “buried bumper syndrome” back in 2014). I didn’t post about this recent problem in my previous blog update because I was hoping it would resolve soon, but it hasn’t. ��

It really hurts to walk, cough, laugh, sleep, etc. So my surgeon is squeezing me in for an urgent appointment on July 5th. Unfortunately, they have to order the tube I need, and it can take up to 5 weeks to be delivered. My surgeon’s team has been looking around to see if other clinics may possibly carry my tube size, but they haven’t found one, so the plan is to place a temporary tube. Tube replacements are incredibly painful (especially when my intestine is raw from the “buried bumper syndrome”). And since it will be done in clinic, I’ll have to be completely awake (which is why I try to coordinate these when I’m already under anesthesia). While I can’t wait for this bad tube to be removed, I’m also dreading it at the same time……I would really appreciate your prayers that I’ll be strong in the Lord and that the pain from the procedure won’t be unbearable. ��

When the correct tube comes in later, I hate that I’ll have to go through another tube change while awake. I know the Lord will be with me for these upcoming tube replacements, and I also remember His grace is sufficient. But I wish this debacle didn’t happen. ��

Sometimes during painful procedures, tears automatically leak out of my eyes. And it makes me think of this beautiful verse from Psalm 9 that I hand lettered a while back. Thank you, Lord, for not forgetting the cry of the afflicted. ❤️

Long overdue update

Tue, 27 Jun 2023 01:36:07 GMT

Hello, friends.

It has been so long since I last wrote. To catch you up on what happened after my blog post in April, my port site was unable to be accessed due to a severe allergic reaction to the surgical glue on my incision. For those who don’t know what a port access is, a large needle is inserted into my port implant. This needle has a catheter attached to it so that IV bags can be infused through my veins.

Anyways, because my port couldn’t be accessed, I was going several days without my nightly IV infusions/medications. So the doctors instructed me to go to the ED to receive a temporary PICC line. I was super bummed about that because 1. the skin on my arm never tolerates a PICC line well and 2. I had to wait more than 8+ hours in the ED due to how busy they were. �� But, I was finally admitted overnight, and the IV therapists placed a PICC the next day.

In early May, my port site was healed well enough to have my PICC line pulled and my port accessed once again! Sadly, the port catheter under my chest got kinked (a rare complication) which makes it hard to flush my line with saline/heparin. If the kink gets even worse, I’ll have to undergo a port revision surgery. �� Taking this day by day, and I’m so thankful the Lord has been helping me through all of these issues. ❤️

Due to having sepsis in February, I had to postpone the surgical repair of my torn hip labrum on the right side. I was going to wait until sometime next year, but my hip has been bothering me a lot lately. So I have an appointment with my hip surgeon in August (she’s sadly booked out).

Still dealing with numerous migraines/headaches caused by my mitochondrial DNA depletion. But I had a virtual follow-up with my headache neurologist in Seattle recently. I’ve been trialing a combination of medications/supplements, and they help somewhat but not enough…so we’re going to try and substitute two of the meds with a different one.

Since so many of my doctors are booked out until August and beyond (GI, Pulmonology, Pain Medicine, Sleep Medicine, Orthopedics, etc), I don’t have a ton of appointments in July. I wish I didn’t have to wait to see my doctors.

But whenever I have a hospital stay, it always puts things in perspective. Being really sick and weak on a hospital bed reminds me of the things I often take for granted: stable health, strength to attend physical therapy and appointments, eyes that don’t have to battle nystagmus (which always becomes debilitating when fighting sepsis), time spent with my family/friends, etc. These are huge blessings from God. So even though it’s not fun waiting several months to see different specialists, I thank Him for this “slow” period coming up next month and the chance to do things I wouldn’t usually have as much time to do. ❤️

Until next time! ��

Urgent Prayer Requests

Fri, 14 Apr 2023 01:23:29 GMT

I will walk by faith, even when I cannot see ..��

Hey friends,

I’d really appreciate your prayers as I’ve hit a bump in the road. �� I mentioned that I had my port implant surgery last Tuesday the 4th…well, because of my mast cell activation disorder, I’m having a severe allergic reaction to the surgical glue they used. My incision site looks very very bad. ��

OHSU dermatology got me in today for an urgent appointment. They’re concerned that my incision could be infected, so they swabbed the site to culture it and also prescribed very strong topical antibiotics and topical steroids. In the meantime, they said this will take several weeks to heal (and I can’t use my port ��) so they placed an urgent order with OHSU Interventional Radiology (IR) to get another PICC line placed. So bummed about that because PICCs itch a ton. ��

Please pray that any bacteria at the site won’t attach to my port (if that happens, I could get septic again and need surgery to remove the port)—trying to leave these concerns in the Lord’s hands and not worry. �� Could you also pray that IR will be able to get me in and place a PICC line asap? Because I haven’t been able to use my port, that means I can’t infuse the IV meds/electrolytes that my body needs everyday.

Thank you, friends. ��

P.S. Thank you to all who have signed up to my newsletter! It brought a smile to my face. Unfortunately, I'm still trying to figure out how to use this certain email service called MailChimp, and it's kinda going over my head...so I just wanted to let you know why you haven't received an email every time I post. Hopefully, once I feel better, I can figure this out or find someone who can help! ��

Exciting news!

Kerissa.a.lee@gmail.com (Kerissa Lee) — Sat, 01 Apr 2023 01:57:39 GMT

...and other updates :)

Hello, friends!

It's been so long since I last blogged--I missed all of you! One of the reasons is because my Pain With Purpose website was in the midst of a complete makeover! The Lord directed me to Maisey.co --it was so amazing to work with this incredible team who built and designed a beautiful new site for me. They even prayed for me when I was in the hospital in February (more on that below). ❤️

I am so excited to tell you that my website is now finished, and if you'd like, you can check it out right at this link: painwithpurpose.com ☺️ It would make me so happy if you signed up for my newsletter! *Also, if you were signed up to my old website, hopefully you received this new update in your inbox as all emails got transferred. Bear with me if not...I'm still getting familiar with Maisey.*

As I shared above, the other reason for this long overdue post is because I was very sick in the hospital due to sepsis from a central line infection (the line had a hole in it from being well used which is how it got infected). This happened just 3 days after my younger brother's beautiful wedding on February 4th. I'm so thankful for God's faithfulness and sovereignty--if I got septic just a few days earlier, it would have been devastating for me to miss my brother's wedding! His timing truly is perfect.

It was a brutal hospital stay. And because I was feeling so sick from the sepsis (fever, chills, vomiting, body pain, tachycardia, nystagmus that's always 10x worse when ill, and many other symptoms), I wasn't well enough to go under anesthesia in the O.R. for the removal of my infected line. So I had to have excruciating bedside surgery while completely awake. :'( But God's grace was sufficient to carry me through such a terrible and traumatic experience.

I was at the lowest of lows physically and emotionally while in the hospital, but like the above verse that I hand lettered once I felt strong enough after coming home, God saved me. He is my help and my deliverer, time and time again.

After waiting many weeks, my port implant surgery is this coming Tuesday on April 4th! Will also be getting my j-tube replaced while under anesthesia. I'm so happy to finally get the PICC line removed from my arm as well! I started experiencing some pain at the insertion site yesterday, so it's definitely ready to be pulled out! My surgery is at 3:30 PM, and the plan is to be admitted for one night (to be monitored) given my past medical history.. I have a lot of scar tissue in my chest from previous central lines/ports, so I'd appreciate your prayers that my surgeon will be able to find a good spot for the port.

Love you all. ��

Reflections on the year 2022

Mon, 02 Jan 2023 02:11:00 GMT

Headache neurology appointment update.

Mon, 17 Oct 2022 01:05:00 GMT

Hi friends,

It’s been a little while since my last medical update. I recently got back from another neurology appointment at University of Washington Medical Center. This appointment was with a headache neurologist regarding my migraines and other neuro symptoms.

It was a very thorough visit, and I’m so thankful the Lord answered our prayers for a kind and knowledgeable specialist. He ruled out the possibility of Pseudotumor Cerebri and agrees with my other UW neuromuscular neurologist (who I saw 2 months ago) that my migraines are related to my Mitochondrial DNA Depletion Syndrome. Since they happen nearly every single day, he diagnosed me with Intractable Chronic Migraine with Status Migrainosus which is a severe type—he said that my brain is too hyper-excitable and that we need to dampen those signals.

In other news, I recently saw my GI specialist. Since last year, I’ve unintentionally lost almost 10 pounds, so he added IV dextrose (sugar) to my IV infusions that I receive every night. We’re hoping that will help maintain my weight. He also ordered some blood tests to check up on my Wilson’s Disease and to make sure I’m not low on iron (since iron deficiency anemia worsens headaches).

Seattle neurology appointment

Sun, 28 Aug 2022 01:17:00 GMT

Hi, friends,

Medical Update July 2022

Thu, 07 Jul 2022 01:39:00 GMT

Hi, friends,

My PCP and I talked about a condition called Intracranial Hypertension. IH is due to high pressure in the brain which can cause many of these symptoms. So he ordered a brain MRI and an MRI of the IAC (internal auditory canal) which will be in a couple of weeks. He also wants me to see my neurologist at UW Medical Center up in Seattle. My neurologist is booked out until December (!!), but every Friday, he blocks off a certain amount of hours for urgent patients, so he is going to see me in the middle of August. I’m so thankful to God for this gift of an early appointment! We’re not sure if my neurologist knows enough about IH as he mainly specializes in neuromuscular disorders, but I know this is in God’s hands.

Prayer Requests

Wed, 27 Apr 2022 01:40:00 GMT

Dear friends,

I’d really appreciate your prayers. The past few weeks, a bunch of different things have happened.

February 2022 Update

Tue, 22 Feb 2022 02:22:00 GMT

Trying to take Jesus’ words above to heart and to “fear not.” This latest trial has been going on for half a year now, and I’m not sure if it will ever end.. But I know God has a plan, and I need to trust Him.

Reflections on the year 2021

Thu, 13 Jan 2022 02:05:00 GMT

Dear friends,

Some of the most difficult challenges of 2021:

As you can see, the pain throughout this past year has been extremely hard. Not just the hip pain, abdominal pain, acute post-op pain from the 3 surgeries, the gallbladder pain when the stone was stuck, but also my daily pain from the mitochondrial disease: migraines/headaches, deep, aching bone pain in my legs, and the small fiber neuropathy in my hands and feet.

It’s so encouraging that Jesus knows what I’m going through and is there for me every step of the way. Yes, 2021 was very rough, and I think I cried more tears than the previous few years combined. But, just like this past year, I know without a doubt that God will be with me in 2022—He promised to never leave me nor forsake me (Hebrews 13:5). I love the comfort that Jesus gives in John 16:33: “I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

June 2021 update and prayer requests

Thu, 17 Jun 2021 02:01:00 GMT

I lettered this piece a couple years ago and never shared it until now. I’m so grateful to God that He “does not leave us as we are.” My earthly body is so broken from disease (more on that below), and to know that Christ will one day give me a new body—what a wonderful promise. ❤️ For […]

April 2021 update

Sun, 11 Apr 2021 01:52:00 GMT

Hi, friends. 🙂 I just wanted to let you know what’s been happening lately. In the middle of March, I started losing muscle control in my arms/hands. 😔 If I’m holding something, my hand will flop but then regain control quickly. Or if I’m holding my phone to text, etc., my fingers will suddenly tap […]

Medical Update

Mon, 08 Mar 2021 02:31:00 GMT

Hi friends,

For those who may not know, I had to go to the ER (and was later admitted to the hospital for 8 days) because I was experiencing sudden and severe vomiting and dry heaving. It was so so horrible to go through. :’( I became very dehydrated because I couldn’t keep anything down, not even my important medications. We pushed small amounts of juice through my j-tube (it’s times like these that I’m extremely thankful for my j-tube!), but I was still getting worse, and my parents had to call the ambulance.

I mentioned this on Facebook, but after my last 10-day hospital stay in September, my physical therapist and occupational hand therapist both worked so hard with me to strengthen my muscles as I was very weak from that mito crash. Well, the muscle weakness is bad from this recent hospital stay, so it’s hard that I pretty much have to “start fresh” again with physical therapy and occupational hand therapy.

Prayer requests

Tue, 02 Feb 2021 02:02:00 GMT

Hi friends,

I would really appreciate your prayers.

It’s been a hard past several weeks. I’ve been experiencing severe leg pain every day (especially at night….I’m not able to fall asleep until after 3 AM every night). We thought it was due to my ferritin being low, so my GI specialist ordered 2 IV iron infusions.

I’m already on high doses of calcium every day, so my endocrinologist is having me increase a medication that I take called Calcitriol. She’s also ordering an IV calcium infusion. But it has to get authorized by my insurance first. Could you pray that my insurance will authorize it quickly? It’s so hard to wait because of how bad the pain is. :’(

On top of this, I’ve also been experiencing really bad pain in both of my wrists and the thumb-side of my hands. I haven’t been able to hand letter, and I really miss it (the lettering pieces you may have seen me post are all older ones that I’ve saved). :’( My hand therapist is having me wear these hand splints that she made for me. She thinks she knows what’s going on, but I do see the orthopedic hand surgeon on February 9th to get an official diagnosis. As you can see, it’s been really hard to have all this new pain on top of my regular chronic pain (small fiber neuropathy, headaches/migraines, back muscle spasms, etc.).

I read this verse the other day from Psalm 37:5. It says, “Commit your way to the Lord; trust in him, and he will act.” Just 2 verses later, it also says to “be still before the Lord and wait patiently for him.”

Reflections on this past year 2020

Fri, 01 Jan 2021 03:47:00 GMT

Dear friends,

Secondly, this past year has been full of hard change—not just for me but for everyone.

In the middle of January, I had foot surgery to remove a vascular malformation that I was born with (I had it removed in 2010, but it grew back because it’s genetic). Since it was on the bottom of my right foot, it caused a lot of pain to walk.

A week later after surgery, I noticed that the central line in my chest had a hole in it. Because of my renal magnesium wasting (my kidneys can’t hold on to magnesium due to the mitochondrial disease), I require daily IV infusions. So, just 2 weeks after the foot surgery, I had surgery to pull out my old central line and place a new one.

Soon after that, I caught C-DIFF (an infection caused by a toxin-producing bacteria in the GI tract). It happens often in immunocompromised patients who were in the hospital and had strong doses of IV antibiotics for surgery (which definitely explains why I caught it!).

I was in severe pain all over (neck, chest, and foot from the 2 surgeries and my abdomen from the colitis caused by the infection). I was constantly in tears because it was so hard to experience all this on top of my daily chronic pain and everyday mitochondrial symptoms. :’(

The pandemic started the next month, and you know what happened then. Not much was known about Covid, so state lockdowns began. Everyone had to start wearing masks. My phsyical therapy stopped for several weeks, and doctors began doing “virtual” appointments.

In August, I had a bad “mito crash” and was hospitalized for 10 days. We think it happened due to doing too many activities that require a lot of energy (in addition, I had a very early virtual appointment with my San Diego mito specialist and had to wake up about 5 hours earlier than my normal). We also think it’s because I had those 2 surgeries so close to each other (both were under general anesthesia which is always difficult for mito patients). That and the C-DIFF infection was really hard on my body.

So, as you can see, a lot has changed physically. And so much else has happened on top of that—the pandemic….racial injustices and division in the U.S….elections….fires in different states….and much more.

1. Even though it was challenging because of my eye paralysis, I was able to read 25 books this year!

October medical update

Sat, 31 Oct 2020 02:31:00 GMT

Hi, friends,

I’ve been home from the hospital for almost 2 whole months now which is so hard to believe. Time is definitely flying, but at the same time, my recovery from the mito crash has been slow.

This month marks one year since being off of IV nutrition (TPN)! It’s such a huge blessing from the Lord, and I’m so thankful to not have to be hooked up to an IV pump during the day! But, the past couple of weeks, I’ve been experiencing more abdominal pain and distention after eating. I’m not tolerating food as well, so my GI doctor is having me try another GI motility medication.. I would really like to stay off of TPN as long as possible!

One last thing—I had a virtual appointment with my favorite doctor in Seattle this week (my pain specialist at UW!). I told him about how challenging it’s been trying to find a new neurologist. Well, there is a neurologist at UW that he knows, and he said that this doctor is wonderful (he’s even a Top Doctor with Seattle Monthly magazine!). My pain dr. referred me to him and sent him an email about me.

Prayer requests

Wed, 23 Sep 2020 01:24:00 GMT

Hi friends,

This is what a typical night in the hospital was like:

-10 PM: nurse gives my nightly medications, starts IV carnitine, IV magnesium, IV potassium, continues IV dextrose

-10:30 PM: IV pump alarms due to “air in line,” nurse comes to fix issue

-11 PM: nurse gives IV pain medications

-11:30 PM: different IV pump alarms due to “down occlusion,” nurse comes to fix issue

-12 AM: IV potassium pump alarms due to “infusion complete”, nurse comes to unhook me, gives oral pain meds

-1 AM: nurse gives more IV pain meds

-2 AM: IV carnitine pump alarms due to “infusion complete,” nurse comes to unhook me

-3 AM: nurse gives oral pain meds

-3:30 AM: IV dextrose bag runs out, nurse comes to replace bag

-4:00 AM: nurse gives more IV pain meds (continues giving IV pain meds every 2 hours and oral pain meds every 3 hours the rest of the night)

-4:30 AM: nurse comes to draw morning blood work

Prayer request

Mon, 07 Sep 2020 01:00:00 GMT

Friends, could you please pray for me? After spending 10 long days in the hospital, I was finally able to go home on Friday.

Hard days

Tue, 01 Sep 2020 02:35:00 GMT

Dear friends,

But, my doctors have adjusted my pain regimen, and I can now receive IV pain meds every 2 hours, my lab work is looking better than before, and my right eye is not as droopy as it used to be (my left eye is not doing too well—I can’t look to the left and that’s causing double vision, but we’re praying it will get better with time..).

“I waited patiently for the LORD; he inclined to me and heard my cry.” – Psalm 40:1

“Our soul waits for the LORD; he is our help and our shield.” – Psalm 33:20

“O LORD, be gracious to us; we wait for you. Be our arm every morning, our salvation in the time of trouble.” – Isaiah 33:2

Getting admitted

Thu, 27 Aug 2020 02:21:00 GMT

Hi friends, just wanted to let you know that the IV D10 infusions that I received for 5 days hasn’t helped this mito crash unfortunately, so my primary care dr. is directly admitting me to the hospital tonight. OHSU is filled to capacity sadly, so I’m getting admitted to Hillsboro Medical Center (which has recently joined/partnered with OHSU).

Here are a few things I’m thankful to the Lord for:

1) HMC has all private rooms so that means I don’t have to share one

2) my primary care dr. is so compassionate and caring and has been trying his hardest to help me feel better

3) the hospital pharmacy carries IV N-Acetyl Cysteine and Glutathione which are both antioxidants (we’ve been wanting to try these meds to see if it can help pull me out of this crash).

4) so grateful I don’t have to go to the ER and instead can be directly admitted

Prayer request

Thu, 20 Aug 2020 02:15:00 GMT

Hi, friends,

I had an appointment with my GI dr. today, and I told him about what happened. Given my GI dysmotility, he said it could have been a partial bowel obstruction…. We also discussed something called “intussusception” which is when the GI tract basically “telescopes” into itself, but that would be last on his list and the only way to diagnose that would be to get a CT scan during the episode.

10 Year Anniversary

Thu, 09 Jul 2020 01:11:00 GMT

Hi, friends!

Well, I just wanted to come on here and share a big milestone! Exactly 10 years ago to this day (July 8, 2010), I had foot surgery to remove a vascular malformation in the bottom of my right foot that I was born with. 17 year old me had no clue what was going to happen following that surgery!

I have left out a lot in this 10-year recap because this is already so very long.. But I just want to say, I don’t know how I could live with all of this if I didn’t have Christ in my life. He daily bears my burdens, sustains me, and carries me through when I don’t have the strength to go on. Without Him, I would be so lost, and I’m sure I would be angry, bitter, and depressed.

All of this happened in just 10 years…and I wonder how much more will happen these next 10 years.. But, you know, the Lord gives me grace at the exact time that I need it—not a moment before…not a moment later.

I love this quote by George Matheson: “My God, I have never thanked you for my thorn! I have thanked you a thousand times for my roses, but never once for my thorn… Teach me the value of my thorns…Show me that my tears have made my rainbow.”

So, yes, after much surrender, I thank God for these thorns because without them, I wouldn’t have the roses! You may wonder, “What are the roses?” Well, to name a few, if I didn’t have these trials, I never would have met such amazing doctors, physical therapists, and nurses (and I wouldn’t be able to share Jesus’ love with them), my relationship with the Lord would probably be shallow, I most likely wouldn’t have learned hand lettering (I started learning lettering because I can’t do active things like “normal” people but can still use my hands thankfully!), and much more!

Challenging times.

Mon, 23 Mar 2020 03:03:00 GMT

Dear friends,

Just wanted to post a little update. On Tuesday, I had another DEXA bone scan to check up on the osteopenia, and then I saw my endocrinologist right afterwards. Sadly, I have more bone loss in my hips. And because of my hypoparathyroidism (caused by the mitochondrial disease), I’m not able to absorb calcium and vitamin D which is vital for bones. In other words, the parathyroid gland is what activates vitamin D so that it can be used by the body. So she ordered a bunch of labs again to check my parathyroid (PTH) level, activated vitamin D level (which is a different test from the normal vitamin D test), and more.

We got the results back, and sadly, my doctor emailed me and said I have to start a bone injection that needs to be done every 6 months. There are side effects with this injection, so I’d appreciate prayer that it won’t cause the possible “bad” effects like infection or jaw necrosis.. Thankfully, she has never had a patient experience the jaw bone death.. I also have to take an activated vitamin D medication called Calcitriol and keep taking 1200 mg of liquid calcium. I did and still do take some naturopathic “homeopathic” medicine for this hypoparathyroidism issue, but unfortunately, it’s not helping, so that’s why we have to resort to this bone injection…. Since I’m only 27, my doctor wants to do as much as possible so that the osteopenia doesn’t progress to osteoporosis..

*Just a little side note: for those who may be new to my blog and have never heard of mito, mitochondrial disorders can affect all the organs of the body because organs need ATP (energy) to function properly (and mitochondria are the organelles that make energy). That’s why I have dysautonomia, terrible chronic pain, fatigue, neurological, endocrine, kidney, gastrointestinal, muscle, eye, and bladder issues, have a central line in my chest for daily IV fluids with magnesium, potassium, and carnitine, a jejunostomy tube in my abdomen for medications, and have to use an adaptive-servo ventilator at night for my central/obstructive sleep apnea and weak lungs. I also have a mast cell disorder, Wilson’s Disease, and Ehlers-Danlos Syndrome which my doctors aren’t sure if they’re a result of mito or separate from it..*

Hard times.

Thu, 06 Feb 2020 06:16:00 GMT

I just wanted to thank you all for the cards, continued prayers, love, and encouragement these past several days. It has definitely kept me going.

“Beloved, do not be surprised at the fiery trial that comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when his glory is revealed” (1 Peter 4:12-13).

Another surgery tomorrow.

Thu, 30 Jan 2020 03:12:00 GMT

| The LORD is my shepherd; I shall not want. He makes me lie down in green pastures. He leads me beside still waters. – Psalm 23:1-2 |

My stitches were removed this past Monday, and I was told that it will be 4-6 more weeks before things will get better. I’m trying to cast all my cares at Jesus’ feet, but it’s hard not to worry about all the above.

So in the midst of this storm, I’m reminded that I can have peace because:

1) Jesus is “my Shepherd,” and He guides and cares for me.
2) He “leads me” and is right by my side.
3) He “makes me lie down in green pastures” (in other words, He gives me REST).
4) I “shall not want” (that is, I don’t have to worry about anything because He always provides in any and every situation).

Quick Update (about surgery tomorrow on 1/15) and Prayer Requests

Wed, 15 Jan 2020 03:25:00 GMT

Hi, friends!

My surgery (to replace my j-tube and also remove the vascular malformation in the bottom of my right foot) was originally scheduled to be done outpatient at the O.R. in the OHSU Center for Health and Healing at the South Waterfront.

But, I saw the “pre-op medicine” doctor last week, and after the appointment, she got in touch with the head of Anesthesiology and my surgeon. Because I went into septic shock and had to go to ICU about 12 hours after my last surgery in 2018, they all agreed that this surgery should be done at the South O.R. up at the main OHSU hospital and then admit me afterwards for observation.

I saw my pain dr. yesterday, and she set up a good plan and list of recommendations for the anesthesiology team. She wants them to do a popliteal nerve block before the surgery which will numb the leg from the knee down. In addition, she would like them to leave this catheter in my leg so that I can go home with the nerve blocking medicine continuously going into my leg for up to 3 days. Their hope with this is that it will help prevent a Complex Regional Pain Syndrome flare-up.

I have to get to the hospital at 12:30 pm, and surgery is scheduled for 3:00 pm. Even though this isn’t a big surgery, I have to go under general anesthesia and be intubated because of my central/obstructive apnea.

Would so appreciate your prayers that:

3. my blood pressure, specifically, can stay up at a good range overnight without any issues. I had dangerously low blood pressure in 2018, and that is why my body went into shock.

4. I will have the stamina and endurance to use crutches (I won’t be able to bear any weight on the bottom of my foot for 4 weeks). It’s always hard for me to use crutches because I have weakness and fatigue from the mitochondrial disease. Thankfully, I have my wheelchair for long distances whenever I go out, but I’ll have to use crutches in the house since our house isn’t wheelchair-friendly.

5. once the nerve block wears off and we pull the catheter out at home, that I will still have good post-op pain control so that I won’t have a CRPS flare-up in my foot.

I’ve had so many surgeries and procedures the past 10 years, and as a result of that, I have scars all over my body. But then I think of these lyrics by Matt Redman which are so encouraging!

Reflections on this past year 2019 (and decade)

Sat, 04 Jan 2020 05:24:00 GMT

“Joy comes from having a relationship with the unchanging God and transcends any trial we can face on this earth” – Jeremy Camp

Dear friends,

I’m a few days late on this annual “reflections” blogpost because I haven’t been feeling my “normal” (more on that at the end of this post).

Anyways, 2019 is now over, and along with that, another decade has passed. I have so many mixed emotions about this.

2010: At age 17, I had surgery on the bottom of my right foot to remove a vascular malformation that I was born with. Throughout the years leading up to it, there were numerous times when I couldn’t walk on it because it caused so much pain. Little did we know that once I had the surgery, things were never the same.

2013: In April, my parents, sis, and I traveled all the way to Cincinnati Children’s Hospital because it’s a top Children’s Hospital and also because we still didn’t have any answers. I saw the Genetics team, and in addition to confirming my Ehlers-Danlos (EDS), they suspected that I could possibly have a Mitochondrial disorder. We started reading up about it, and as I began to have more and more concerning neurological symptoms and GI dysmotility, mito seemed like it could be THE answer (since mito “red flags” are if you have symptoms in 3 or more organs). My parents and I went back to Cincinnati Children’s at the end of 2013, and I saw many more teams like Cardiology, Pulmonology, Neuro-gastroenterology, and Genetics again. Because the genetics team wasn’t an expert in Mitochondrial Medicine, they referred me to a top mitochondrial specialist at UCSD in San Diego.

2014: I started to lose weight because my GI dysmotility was really bad….I couldn’t handle much food at all. I drank nutritional shakes and even baby food pouches, but I continued to lose, so I had to get a nasal-jejunal feeding tube placed for continuous tube feeds. In June, my parents, sis, and I headed down to see my mitochondrial specialist. We spent a week there….the evaluation was very long, and I also had to get my first muscle biopsy and a lot of genetic testing sent off at the end of that week.. It took many, many months for results to come back. In August, I had yet another surgery to get a jejunostomy feeding tube placed in my abdomen since NJ tubes are only temporary. But, a couple months later, I started to not tolerate my tube feeds because my GI dysmotility had worsened. I became malnourished, and I felt terrible. My weight dropped down to 77 pounds, so because we ran out of other options, my GI doctor had me get admitted to OHSU the day after Christmas to start TPN (IV nutrition). That’s considered a last resort because of the complications that can happen from it (blood infections due to having a central line for the TPN, liver disease, etc.), but sadly, there were no other good options.

2016: The beginning of this year was really rough. I ended up in the ER for body pain all over and other symptoms. I was diagnosed with Hypomagnesemia and had to add yet another specialist to my long list—a nephrologist. When I saw the kidney specialist and had more tests, we found out what was causing the hypomagnesemia. I had renal magnesium wasting….in other words, my kidneys weren’t holding on to Mg which was then causing the low Mg levels. I had to get 8 GRAMS of IV magnesium for 5 hours every day, along with 16 hours of TPN every night. It was so hard being hooked up to an IV pump pretty much the whole day. After that ER visit, I still was feeling really ill. When I was finally able to see the liver specialist, I had acute hepatitis from the Wilson’s….so I was started on continual zinc therapy which is a chelating agent (it blocks the body from not absorbing any more copper). In March (a year and one month since my central line placement), I experienced sepsis for the first time, and we found out I had a blood infection (staph capitis) from my central line. I had to get the line removed and have surgery to place a new line on the other side of my chest. In August, I had surgery on my left hip to repair a hip labral tear. I also had another surgery at the same time—my second muscle biopsy to do more mitochondrial tests and also check up on the depletion. When we received results back, we found out that my depletion has worsened and also that my muscle had more abnormal histological changes. At the end of this year, I had a tunneled line infection which thankfully didn’t travel to my blood. But my dr. decided I should get a port placed to try and prevent me from having a blood infection every year (a port works the same way as a central line but you have to get poked every time to get blood drawn). My GI dr. told me that ports are known to cause fewer blood infections.

He also ordered a specialized liver ultrasound called a FibroScan (transient elastography). Would appreciate prayers that it can be done within the next week. Because if the scan is normal, he will consider a liver biopsy to be done the same time I have my foot surgery (to remove that vascular malformation which grew back in the bottom of my right foot) and j-tube replacement on January 15th.

As you can see, this past decade has been so hard. SO VERY HARD. I’ve lived with chronic pain for 10 years now, I’ve had countless ER and hospital stays throughout the years. I still can’t drive. I have doctor appointments on end. I’ve been poked and prodded and have had horrible procedures/surgeries and invasive tests (I’m having surgery #21 in a couple weeks, Lord willing). I still can’t work (other than my little job with Punkpost which is a huge blessing from God).

But you know what? I don’t want you to feel sorry for me. I don’t want your pity. But I do want you to know that I truly couldn’t haven’t survived these past 10 years without my Lord and Savior, Jesus Christ, by my side. I could be angry at Him. I could be depressed. I could feel like life has no purpose or meaning. But because of Him, I do have purpose in the pain. He is my Rock, and He has carried me through all of these past 3,650 days. And I know He will be there for me the next 10 years as well. The Lord is so good and so faithful to me, and I’m so thankful that “God’s goodness doesn’t change based on the condition of my circumstances” (unknown author).

Past Few Months.

Sun, 03 Nov 2019 03:01:00 GMT

Hey friends,

Just wanted to check in with a medical update. Thank you so much for your continued prayers for me! I’m so grateful. The past few months have been a little rough since I last posted, and I’ve had to just take it one day at a time and lean on the Lord for strength.

At the end of July, I doubled the dosage of one of my nerve pain medications because the small fiber neuropathic pain in my hands and especially in both feet/legs has been so very bad. :’( Doubling the dose helped the pain somewhat (a little relief was better than nothing), but then we found out that my blood sugars started spiking into the 170s and higher.

My pain dr. started me on a different nerve pain medication, but I have to increase it very slowly…and currently, this low dose isn’t helping unfortunately.

My hypoparathyroidism is also worse (due to the mitochondrial disease)—my nails are chipping and I’m losing hair. With hypoparathyroidism, my body is also not able to absorb calcium and phosphorus well, so this is causing my osteopenia to progress. My endocrinologist doubled my calcium dosage and also wants more lab work done to see if I may need to take activated vitamin D (which is a prescription medication, not the vitamin D supplement that I also take)… She ordered another DEXA scan that will be done in March to check the osteopenia, and if it looks even worse, then I have to start an IV bone infusion. In the meantime, I did see my naturopath to see if anything else can be done for all of this, and he is having me take some homeopathic medicine. He’s not sure if it will help due to the underlying mitochondrial disease, but it doesn’t hurt to try.

While it is very nice to be off of the IV nutrition, I sadly can’t get rid of my central line because I still have to receive IV carnitine, magnesium, potassium, etc. for 8 hours every single night.. But, looking on the bright side, I’m so very grateful to God that I don’t have to be hooked up at all during the day (and lug an IV backpack around everywhere I move)!

Mitochondrial Disease Awareness Week 2019

Mon, 16 Sep 2019 01:30:00 GMT

To bring more awareness, I just wanted to share a little about how Mitochondrial DNA Depletion Syndrome affects me which is the specific mitochondrial disorder that I have (there are many types).

I’ve had sepsis 3 times (2016, 2017, and 2019) and septic shock once (2018).

I have a j-tube in my abdomen to flush medications through because big pills get stuck in my esophagus caused by esophageal dysmotility/weak peristalsis. I also have a central line in my chest for IV nutrition and IV magnesium for renal magnesium wasting.

I have muscle weakness and fatigue so I have to use a wheel chair for long distances. I have numerous eye disorders caused by mito—ptosis (drooping of the eyelids, especially when I’m really tired), external ophthalmoplegia (paralysis of certain eye muscles), and nystagmus (involuntarily “shaking” of the eyes).

I have centrally-mediated vertigo and also complex sleep apnea (both central and obstructive). I have to use an adaptive-servo ventilator at night because without it, I only breath on my own 40% of the time.

2019 Mitochondrial disease appointment recap

Sat, 17 Aug 2019 02:39:00 GMT

Hey friends,

That whole ordeal with the mixed-up sleep devices was so hard to experience, but we’re all just so thankful that I got my ventilator back (it is very expensive!).

I also asked him what the doctors learned at the UMDF 2019 symposium this past June, and he said they’re seeing/learning more and more how mitochondria are involved with inflammation. That was interesting to hear about!

Latest medical news.

Sun, 09 Jun 2019 01:29:00 GMT

Hey friends,

I have an appointment with my orthopedic doctor on June 17th, and I’m praying he will be able to figure out what’s going on. It’s just been so difficult to deal with this new neck pain on top of all my other chronic pain.

And then, to make matters worse, for those who may not remember, I was born with a hemangioma (benign blood tumor) on the bottom of my right foot. Well, growing up, it caused so much pain to the point that I couldn’t bear weight on it.

I saw my PCP this past Monday, and he wonders if the surgeon wasn’t able to remove all of the “bad” cells then or if this is going to become a “thing” where I need surgery every 8-9 years… So he is referring me to a surgeon to hopefully get this removed again..

I’ll always wonder why I (and none of my siblings) was the one to be born prematurely with this birth defect as well as the sinus defect near my ear (which was repaired when I was 10 years old). I also always wonder why I’m the only one with mito….and EDS….and Wilson’s Disease….and mast cell disease, etc. and why none of my siblings are affected (as far as we know..).

I wish things were different….for example, it’s been 8 whole years since I graduated from high school, and I realize that I could have graduated from med school (one of my dreams!) this year if none of “this” happened.. But as you can see, my life had/has a different direction, so the only thing I CAN do is keep trusting the Lord with this wild journey.

__________________

Hard battle.

Tue, 26 Mar 2019 01:45:00 GMT

Hey friends,

This will be incredibly long, but I just want to document everything so that I don’t forget..

On January 25th, I came down with a scratchy throat and congestion. I thought it was turning into a cold, and I was a little bummed since it’s always harder for me to recover from sickness.

Well, Sunday evening (the 27th), I suddenly started experiencing a fever, chills, severe low back pain, high heart rate, and more.

My parents took me to the ER at OHSU where I was quickly seen by triage. They drew labs and hooked me up to IV fluids because my lactate and white blood cell count was high (they checked if I had the flu or a bladder infection…but both tests were negative). The ER doctor told us that I was going to get admitted so that they could start aggressive IV antibiotics.

There were no inpatient rooms available at that time, so I spent the first night in the ER observation unit. When an inpatient room finally opened up the next day, I was moved to 14C.

I had septic shock in August 2018 (and that is much more serious than sepsis), but physically, this was incredibly harder. :’( Words can’t describe how hard it was to go through this..

I had severe nystagmus and was also vomiting and retching day and night. That was the HARDEST part of this whole hospital stay. I was maxed out on IV anti-nausea meds, and still, those only helped for a little bit. All the vomiting caused my electrolytes to go all over the place…this really concerned the hospitalist, so I was continually given IV potassium, magnesium, etc. to try and stabilize the blood levels.

I was in tears so much of the time….from not being able to eat or drink anything for several days, from the severe nystagmus (which made me want to cut my eyeballs out), from the non-stop vomiting, from the whole body pain….and I kept crying, wondering why prayers weren’t being answered. :’( Those were dark days.

There were more than 10 IV bags on the IV pole….the nurses said I was so complicated. I had numerous lines going into me, and they had to label them all. Even though I have a double lumen central line, I had to get IVs placed because of all the medications. My IVs kept blowing, though, because of so much scar tissue from IVs in the past, so I had to get a “midline” placed which is similar to a PICC line.

It took so very long for things to start turning the corner, and as I mentioned earlier, it just seemed like the Lord wasn’t answering my prayers….I now know and realize that He was answering them in other ways:

He blessed me with a private room which also had a bench near the window…my mom was able to stay with me each night and be right there when I was in so much distress (physically and emotionally).

The Lord also blessed me with 2 amazing and compassionate hospitalists. And even my former home health nurse was able to take care of me for some of the time which was such a gift—in the ER, I asked the doctors if I could be admitted to the floor where my home health nurse was, and they said that they can’t control where I get moved….but God, in His kindness and providence, miraculously opened a room up on the exact floor where my nurse worked. :’)

In addition, the hospitalist called my neurologist on a Sunday to try and get in touch with her since my symptoms weren’t improving, and even though she wasn’t on-call that day, she answered her phone. She suggested a certain IV medication to calm the nystagmus down. And once I did receive it, the nystagmus completely stopped. :’) It also helped the nausea/vomiting.

The Lord continued to give wisdom and insight to the hospitalists. And not only did they treat me for sepsis, they also treated me in case I was experiencing a mast cell disease flare-up and/or exacerbation of the Wilson’s Disease.

______________________

In other news, my PCP is referring me to OHSU immunology to see if we can get to the bottom of these sepsis episodes. My appointment with the specialist is next month.

My orthopedic surgeon did say at my last follow-up that sometimes she has to do another hip surgery to remove scar tissue….but she’s hoping that injections with physical therapy will fix my issues so that we don’t have to go down that route..

It’s also been more than 4 years since I was started on TPN (IV nutrition), so I asked my GI doctor for a little break. It’s just so hard to be always hooked up to the IV pump. So in January, he decreased my TPN so that I’m off of it every Monday, Wednesday, and Friday. I still have to do IV magnesium every day, but those 3 days that I’m off TPN, I move my afternoon IV magnesium and infuse it during the night. It’s simply glorious to not be hooked up at all during the day (on Mon, Wed, Fri)!

Reflections on this past year 2018

Fri, 04 Jan 2019 03:21:00 GMT

Dear friends,

As I look back on 2018, it brings back so many emotions and memories…. But, I see God’s faithful hand throughout all of it once again.

There were many joyous and happy times….like when my family and I were able to spend 10 amazing days at Disney World/Universal Studios Orlando in February (a very, very special gift from some dear friends). It was such a memorable trip.

But less than 6 months after that, I experienced one of the hardest things I’ve ever gone through—my body going into septic shock.

I realize that could have happened to me. But the Lord, in His faithfulness and with His mighty hand, gave my body strength to fight this.

It’s God’s providence that I was still in the hospital when all this happened (instead of being at home). The doctors acted really fast and intervened before things got even worse.

I thank God for carrying me through that dark time. He is always with me! And He really does hear our prayers and our cries for help.

It’s Day 3 of the year 2019. I don’t know what’s up ahead….maybe this year will be easier…maybe even harder… And sometimes, it feels like I’ve used up all my strength.

But God always fills me back up. He restores my soul. He lifts me up out of deep waters. He gives me grace upon grace.

So I will hold onto these promises tightly. And I will head into this new year with courage!

I know this is a few days late, but Happy New Year, friends. Whatever comes, may we all “be strong in the Lord and in the strength of his might” (Ephesians 6:10)!

Love, Kerissa

Appointment updates.

Tue, 13 Nov 2018 04:25:00 GMT

Hey friends,

It’s been exactly 2 whole months since I last posted—I’m sorry I haven’t kept you in the loop lately!

In October, I had a tunneled central line infection (thankfully, it didn’t spread to my blood). My central line site was really tender and oozing a little. So my GI specialist quickly started me on a 10-day course of Doxycycline (a very strong antibiotic I’ve never taken before).

Several weeks ago, I had my first appointment with an OHSU endocrinologist. She wanted to run a bunch of labs (I had to get 8 tubes of blood drawn) and have me undergo a cortisol stimulation test to rule out adrenal insufficiency. If I have adrenal insufficiency, my doctor explained how that would be the answer as to why I went into septic shock in August.

Regarding the osteopenia, I see my endocrinologist again in March to get another bone density scan done. The scan will show us if the osteopenia is stable or not.

Last week, I had 5 appointments which was so very tiring! And this week, in addition to physical therapy, I have follow-ups with my urology surgeon and my pain doctor.

Anyways, if I don’t get a chance to update again before the end of the year, Happy Thanksgiving (and Merry Christmas)!!

Septic Shock and the ICU

Thu, 13 Sep 2018 03:32:00 GMT

Hey friends,

About 24 hours after my hip labral repair surgery on August 10th, I went into septic shock (there are 3 types of sepsis: sepsis which I’ve had twice, severe sepsis, and septic shock). Everything happened SO fast, and it was so scary and tramautic to experience. :'( The Rapid Response team was called because my blood pressure got dangerously low, I had a 101.6 fever, and just felt really bad. They quickly came and assessed—blood cultures/labs were drawn, a chest x-ray was ordered, and vitals were checked every 15 minutes…they decided that I needed to be transferred to the MICU (medical intensive care unit) because my MAP (mean arterial pressure) was below 60. Normally, my MAP is around 75, and it needs to be above 60 in order for all the organs to be adequately perfused with blood flow.

The doctors started me on a “vasopressor.” A pressor is a very strong medication given to treat life-threatening low blood pressure. My blood pressure was so low that my kidneys started shutting down (that is, they stopped making urine), so the ICU doctors also placed me on lasix to get rid of all the fluid. My liver also started failing and got “hit” with ischemic hepatitis. My liver enzymes sky rocketed and were 40 times higher than the upper limit of normal (normal is under 40, and mine were above 1600).

I had terrible chest pain/tightness, and 2 x-rays showed fluid in my lungs. So in addition to being placed on my adaptive servo ventilator for my breathing, they also had to place me on 10 liters of oxygen through my ASV machine.

I had really bad double vision….the doctors suspected it was because of the shock on top of my mitochondrial disease, so my eyes became extremely weakened from the stress of everything.

I felt emotionally spent and was in tears from all the pain—the post-op surgical hip pain, the body pain from septic shock, etc., so I was given IV Dilaudid (which is stronger than morphine) every 2 hours. My blood counts and other labs were all over the place—I was constantly being repleted with D10 (dextrose), IV Phosphorous, IV Calcium, IV Magnesium, etc. I hardly slept because the pump kept beeping all the time or because the nurses kept coming in to give meds/replace IV bags.

When I was given IV nausea meds which stopped the vomiting for a period, we tried a second time to get the CT scan. Results showed that I didn’t have cholecystitis (thankfully), but it did show body wall edema, ascites (fluid in the abdomen), and an enlarged para-aortic lymph node (reacting to the shock). It also showed that I had bilateral pleural effusions and atelectasis (areas of collapsed lung) which explains all the chest pain/breathing problems I experienced.

Even though my body experienced septic shock and everything else that happened with it, I was only in the hospital for 6 days. Friends, prayer is so powerful, and God really does hear each and every one! When I was in the ICU, my very caring pastor visited me early Sunday morning before he preached. He prayed for me, and it so encouraged my heart. During his sermons, he also told the whole church about me.

My whole family and I felt the prayers of so many. Through this storm, there was also peace. And I am reminded again how blessed I am. So many caring friends and family visited and blessed me and my family with cards, flowers, and snacks.

Even my pharmacy and all who work there wrote in a card, gave gifts, flowers, and a treat. And one of the pharmacists who is always so kind to me and my parents came to my house just this week and delivered the whole package. Can you believe it!? :’)

On Friday, I have my first appointment with OHSU Endocrinology for the osteopenia. And next week, I have more PT, a follow-up with my GI specialist, and an appointment with my neurologist to discuss those neuro episodes I had.. Staying busy!

Mitochondrial disease appointment update 2018

Thu, 26 Jul 2018 04:20:00 GMT

Hey friends,

I’m sorry it’s taken me so long to write an update on how my neurometabolic appointment in San Diego went!

Been trying to pull all my thoughts together on what we learned at the appointment.

After updating my mito dr. on all that’s happened since I last saw him, he is thinking more and more that the POLG gene variant that was found in my whole exome sequencing is the likely culprit that’s causing my mitochondrial DNA depletion.

According to the NIH genetic reference site, POLG “is a DNA polymerase, which is a type of enzyme that “reads” sequences of DNA and uses them as templates to produce new DNA.” It is also the “ only DNA polymerase that is active in mitochondria and that can replicate (make new) mtDNA.”

POLG-related mitochondrial diseases can cause numerous issues, including problems like cardiomyopathy. So he said I need to have an EKG every year and an echocardiogram every 2 years. I also need to stay away from certain medications that can induce POLG-related liver failure.

There is a drug trial that is in phase 3 and going well, but this medication (called Elamipretide) is mainly for mitochondrial myopathy, so he said that wouldn’t be the best fit for me since I have more issues than just muscle weakness. He did say the company that created Elamipretide is starting to work on many other promising drugs.

The other way to confirm a VUS as pathogenic is to put a patients’ genetic data/reported phenotype in a database like NAMDC or MSeqDR (Mitochondrial Disease Sequence Data Resource Consortium), and if several patients with the same variant have similar symptoms, then that variant gets confirmed as pathogenic.

I asked him what my future will look like medically, and he said no one can really say (since every patient with mito presents differently)….he said mito is very serious, but he also told me that I’m coping really well. Of note, he did say my brainstem is not functioning well…. The “sleep center” is in the brainstem which is why my complex sleep apnea is so bad.

Regarding my myoclonus, the medication I’m on for that isn’t helping the best, so he told me about another medication I could try that doesn’t worsen apnea. I have to see my neurologist here to talk about it.

My hip surgery is scheduled for August 10th. Less than 2 1/2 weeks away! The surgery scheduler is working on setting up my pre-op appointments as well.

Discouraging news.

Tue, 03 Jul 2018 03:01:00 GMT

Hey friends,

Once I do have a surgery date, my GI dr. is going to contact my general surgeon so that my j-tube can also be changed to a new one while I’m under anesthesia. My current tube has been causing a lot of problems and pain.

Soo, a lot to process… A lot of discouraging news… But I will keep persevering. Lately, I’ve been reflecting on this verse in the book of Job: “Though He slay me, yet will I hope in Him” (Job 13:15). I have so many things going “against” me, and it just gets harder and harder, but….my hope is and will always remain in Christ alone. This recent quote by Glenna Marshall was so thought-provoking: “Hope that is anchored in Christ doesn’t disappoint because it cannot be plucked from our hands the way that health, possessions, normalcy, and relationships can. Hope in Christ is eternally secure.”

7 years ago.

Thu, 07 Jun 2018 03:45:00 GMT

“When the storms of life hit, they almost always appear stronger to us than God’s word. It is crucial for us to remember that our perceptions can be deceptive. When circumstances strike fear into our hearts, the questions we must always ask ourselves is, where is your faith? What God wants is for you to trust what He says over what you see.”

Hey friends,

Like all those who graduate, I had many plans. I wanted to study medicine, get a job, drive…..but none of that came to pass. :'(

Yes, sometimes it all feels like a bad dream, but….through this whole journey, I’ve also seen God’s abundant grace. I never could have endured (and continue to endure) the countless doctor appointments, surgeries, procedures, tests, blood draws, IVs, ER visits, and hospital stays without Him by my side. I’ve been through horrible procedures and tests (some too awful to share), and I remember just crying out to God that I need help to get through them.

I have learned so much going through this, but I will share two things: the Lord does hear your cries and He really is there for you. He is not a distant God.

He knows my pain and suffering….and He doesn’t just “stand by and watch.” He carries me through the hardest of days and gives me so much grace to bear the unimaginable.

Yes, of course I wish I didn’t have to go through any of this. But I trust in His plan….He knows what I can’t see. So I won’t get depressed or feel hopeless. Because I do have a Hope. I have purpose. And I may not know all the answers to my questions….I may never know until Heaven. But I do know the Lord called me and chose me for this path—-and even though I can’t “do much,” I’ve learned that I can serve Him in other ways. Like being a living testimony of His goodness and grace.

In other news, I recently had my monthly GI follow-up. I’ve been having very painful intestinal spasms that push my feeding tube “in and out.” We also discussed if it’s possible to do a “TPN holiday” or even get off of my nightly TPN. Then I’d be able to do my IV magnesium at night instead so that I wouldn’t have to be hooked up during the day. But in order to do this, I would need to increase my tube feeds and/or eat enough protein orally. It’s so hard increasing my tube feeds because the longer I’m hooked up to formula, it just seems to “build up” in my small intestine and not move well. I have to keep trying, though..

Next month, my parents and I head to San Diego to see my mitochondrial specialist. I haven’t seen him since January 2017!

Very long medical update.

Wed, 02 May 2018 03:41:00 GMT

Hey friends,

He wanted me to get a work-up at the ER. So on Tuesday, April 10, I went in. I was dehydrated from not being able to drink much at all (my daily IV magnesium and nightly TPN wasn’t enough even). So the doctors gave me more than 2 liters of IV fluids with dextrose. That helped a lot.

They drew a ton of labs and also checked to see if I had a bladder infection. Here’s where it gets kind of hard to understand… There are different parts to a urinalysis—-the first part showed that I had trace white blood cells. So the doctors weren’t sure if this was a borderline infection or what. The second part (called a culture screen) came back positive for infection. So I got admitted overnight, and they started treating me with antibiotics. But the next morning, the actual culture test (where they wait to see what kind of bacteria grows) came back and said, “No significant growth.” So it turns out that I didn’t have a bladder infection! We don’t know why it showed white blood cells or why the culture screen was positive…

I’m more glad than sad about this decision because going into it, I just felt uneasy and didn’t feel ready for this major of a surgery. Also, it got postponed twice so I kept wondering if that was the Lord telling me that now is not the right time to have this surgery.

Postponed again.

Sat, 17 Mar 2018 03:43:00 GMT

Hello friends,

My family and I recently got back from an amazing vacation in Orlando, Florida! I shared this on FB, but for those who didn’t know, a very kind friend and his wife wanted me to “make a wish,” so I chose Disney World/Universal Studios since I’ve never been there, and my family and I all had the most wonderful time!!! The weather was so beautiful, the food was amazing, the parks, rides, and shows were all so very fun, and it was just so nice being able to get away from weekly doctor appointments and all things medical-related.

I can’t remember if I ever mentioned this before, but there’s been a TPN (IV nutrition) shortage because one of the main places TPN is made from is Puerto Rico.. They’re still recovering from all the hurricanes, etc., so because of the shortage, my IV protein had to be decreased by 10 grams per day. That is one of the reasons why my prealbumin dropped. My dextrose (sugar) also had to be taken out of my IV magnesium bags because they’re short on that, too.

So, I made another appointment with my surgeon to discuss the new plan once again. She’s booked out, so it’s not until next month..

I will keep you posted when my bladder surgery gets rescheduled and what my surgeon plans! I will also try to keep the updates going when/if anything new comes up..

End of January update

Thu, 01 Feb 2018 04:23:00 GMT

“Faith means believing that God is good. Even if we can’t see it today, one day we’ll look back and see clearly His sovereignty, goodness, and kindness.”

~Randy Alcorn

Hey friends,

My right hip has been really bothering me lately, and we’re not sure if my right hip labrum is torn (which is what happened to my left hip in 2016). So now I have to go through the same process again of seeing my orthopedic surgeon who will most likely order a right hip MRI arthrogram and a diagnostic hip steroid injection. But, I might not be able to have all of this done until after my major bladder surgery in March…we’ll see what my surgeon says in a couple of weeks.

I’m still having a lot of central apneas even with the new ventilator that I got, so this week, my sleep specialist adjusted the settings once again. Hopefully that helps!

I can’t believe today is the last day of January! :O

Reflections on this past year 2017

Wed, 10 Jan 2018 04:50:00 GMT

Dear friends,

In 2017, I had….

75 doctor appointments

39 physical therapy and swallowing therapy appointments

56 home health nurse visits and 56 port/central line dressing site changes

1 trip to San Diego in January to see my mitochondrial disease specialist, 1 trip to Pasadena, CA in May to see my new mitochondrial geneticist after waiting a whole year to see him, and 1 trip to Seattle in August to see my pain dr. at the UWMC

5 weeks of IV iron infusions

1 blood clot

1 port placement surgery

2 venous duplex ultrasound scans, 1 kidney/bladder ultrasound (found out my right kidney gets dilated due to my neurogenic bladder), and 1 DEXA scan (got diagnosed with osteopenia)

1 chest CT scan

5 chest, abdominal, and hip x-rays

3 hospital stays

1 ambulance ride

5 ER visits

Sepsis from a central-line associated bloodstream infection (CLABSI) due to methicillin-resistant staphylococcus epidermidis (was admitted to the hospital for 9 long days)

1 port removal surgery and 1 central line placement surgery

1 EEG and 1 sleep study (diagnosed with central sleep apnea and I now have to use an adaptive-servo ventilator at night)

1 pulmonary function test

2 separate times my jejunostomy feeding tube got accidentally pulled out

1 horrible feeding tube infection that required incision and drainage for an abscess that formed

4 different IV and oral antibiotics (Vancomycin, Zosyn, Cephalexin, and Augmentin) given throughout the year for all the numerous infections

1 bilateral lumbar sympathetic nerve block

It was difficult seeing so many young adults my age living “the dream” and getting to do what they’ve always wanted to do….even if it was just getting their driver’s license, a job, or going to college—all things that I haven’t been able to do still.

The Lord not only taught me about contentment but also about trust. I continue to remind myself that He chose me for this path. I don’t know why I’m the only one in my family who got the “full-blown” mitochondrial disease, but even before I was born, He knew me. And I was “ fearfully and wonderfully ” made (Psalm 139). I just need to trust Him fully with this path I’m on.

Other than a major surgery looming in the near future, I don’t know what other hard things will happen in 2018.. But Joni Eareckson Tada said it beautifully, “ …I’m not going to be fearful about what I have no grace available for yet. I’ve got to take a deep breath and trust my Savior will help me… “

“He leads us on by paths we did not know;

Upward He leads us, though our steps be slow,

Though oft we faint and falter on the way,

Though storms and darkness oft obscure the day;

Yet when the clouds are gone,

We know He leads us on.

He leads us on through all the unquiet years;

Past all our dreamland hopes, and doubts and fears,

He guides our steps, through all the tangled maze

Of losses, sorrows, and o’er clouded days;

We know His will is done;

And still He leads us on.”

~by N. L. Zinzendorf

Long overdue update regarding surgery

Wed, 06 Dec 2017 04:10:00 GMT

“Instead of a river, God often gives us a brook which may be running today and dried up tomorrow. Why? To teach us not to rest in our blessings, but in the blesser Himself.” -AW Pink

Hey friends,

Well, at the end of that week, I started feeling a little “off” with a low grade fever. Then, more and more things started going on like no appetite, weight loss, nystagmus, more fevers, and I almost threw up during the middle of the night this past weekend.

And still, my prealbumin continues to remain low. Something seems to be brewing, and we’re not sure what….whether it’s a “mito crash” or the start of a central line blood infection. So my surgeon agrees that we shouldn’t have the surgery right now because I need to be as healthiest as possible and this prealbumin level NEEDS to go up! She does want to see me again for a follow-up to discuss the new plan going forward..

In the middle of November, I had my 6th sleep study to adjust the levels for my new adaptive servo ventilator for my bad central sleep apnea. Right now, I’m using a loaner machine, waiting to get my own new device as soon as insurance approves it..

I still need to get used to this ventilator….it’s weird….if I hold my breath, the machine “breathes” for me! :O

On top of all that has happened lately, I also had to make an unexpected trip to the ER last week because my jejunostomy feeding tube accidentally got pulled out completely! :’( And it was so extremely painful to try and insert back in.. I was upset that this happened a second time, and I just hate to think that this may happen a third time….even though I try to prevent these things from occurring by using a feeding tube clip on my shirt.

But, I’m continuing to take it one day at a time, knowing that God gives His unending grace to me for each hard day.. He is so faithful and patient and kind to me.

Surgery consult

Sat, 28 Oct 2017 03:48:00 GMT

Hello friends,

I recently had a long appointment with my urology surgeon at Doernbecher’s. She explained how this is a very major bladder surgery….and I was so shocked to hear her say that this surgery can last up to 12 hours….(for example, it could start at around 7:30 AM but not end until 7:30 at night)…! :O It’s so scary to think about, but this surgery is so needed to protect my kidneys/bladder long-term. I never really described the surgery or even told you what it’s called, but I will try explaining it now.

This means that my appendix is too short to be used solely as a tract. My surgeon did say that she won’t know for sure what she’ll do until I’m “opened up.” Most likely, though, she will try to use my appendix but also use my small intestine. She’ll form a tract from the intestine and connect it to the appendix. She said this will mean a much longer surgery time. At first, she thought it would take an average of 6 hours only, but now it looks like the surgery will be longer than that..

With this newly made tract, I will be able to insert a catheter through it and empty my bladder that way.

Thank you so much for continuing to pray for me! It means the world!

Keeping on.

Fri, 06 Oct 2017 03:29:00 GMT

Hey friends,

But I will try to post an update for each medical specialty:

Podiatry~

On September the 19th, I had toenail surgery under anesthesia to correct the ingrown toenails. Everything went well, but my toes are still bleeding/draining even now which means I have to continue soaking my feet in epsom salts. It also hurts too much to wear shoes. I have a follow-up with my podiatrist next week to make sure everything is healing well.

Pain Medicine~

Otolaryngology~

Neurology~

Physical Medicine~

Internal Medicine~

Nephrology~

Swallowing Therapy~

I had a long session with my swallowing therapist for the first time this week. She and the fellow evaluated my swallowing with lots of different food textures. She had me work on several different swallowing techniques and exercises to try and help this “premature spillage” swallowing problem. She doesn’t know if it will help, but we will at least try. Some of the swallowing exercises are challenging!

Sleep Medicine~

Sadly, there are still no sleep study openings sooner than December. So my sleep specialist this past Wednesday decided to try and order the new machine (called an adaptive-servo ventilator) for my bad central sleep apnea before the study and see if insurance will possibly cover it. Please pray they will be willing to use only his chart notes for now to back up my need for this machine!

Urology~

Updates on the past few weeks.

Thu, 14 Sep 2017 03:39:00 GMT

Hey friends,

I started that medicine for my kidneys to potentially hold on to magnesium better, but I need to wait a couple of weeks to see if it really helps.. My blood pressures can get pretty low with this med (it can drop down to 82/56ish), but thankfully, I haven’t had worsening dizziness or lightheadedness.

Please pray.

Fri, 25 Aug 2017 03:48:00 GMT

“If I should say, ‘My foot has slipped,’ Your loving kindness, O Lord, will hold me up. When my anxious thoughts multiply within me, Your consolations delight my soul.”

~Psalm 94:18-19

Hey friends,

I will keep all of you posted on what we find out….thank you so much for praying for my sister Karina!

Regarding the new neurological symptoms that have been happening numerous times during the night, my neurologist is going to order another EEG (my last one was back in 2015) to rule out seizures or other brain problems.

Thank you so much for supporting me and my family! Your prayers give us strength and courage to take on whatever comes our way.

Concerning issues.

Thu, 10 Aug 2017 03:35:00 GMT

“But I will call on God, and the Lord will rescue me. Morning, noon, and night, I cry out in my distress, and the Lord hears my voice. He ransoms me and keeps me safe from the battle waged against me…”

Psalm 55:16-18a

Hello friends,

Wow, where has the time gone?? I haven’t blogged here in almost a whole month!

He gave some good pain management recommendations for all the chronic pain, and hopefully, my pain dr. here or my palliative ANP can start me on one of them soon. My next appointment with my local pain dr. at OHSU isn’t until the 29th, so the palliative care team is trying to get me in soon.

I got my blood Carnitine levels back, and my mitochondrial geneticist in Pasadena said they’re quite low, so he wants me to have 2 grams of IV Carnitine added to each of my nightly TPN (IV nutrition) bags. He said it may help some of the pain and weakness that I experience. My GI dr. recently put in the order for this to be added.

I saw my physical medicine doctor, and he ordered a lightweight thoracic spinal brace for my achy back pain and muscle weakness. It’s $800-$900 out of pocket (!!), so we’re trying to get it covered by my insurance. It’s taking a long time because the company that offers these types of braces wants to see my medical records first.

This has just been a really hard journey, and it seems like the battle will never end. But the Lord will always carry me and my family through this. He is so faithful and will never forsake us.

Sepsis….a second time. And news on baby Charlie Gard.

Sat, 15 Jul 2017 03:55:00 GMT

Hi friends,

Wow!! So much has happened, but I will just go right in and try to tell you everything..

Thankfully, there was hardly any wait time when we arrived. I had several tubes of blood drawn, and the doctors also ordered a chest x-ray and urinalysis to rule out a bladder infection. The x-ray and urine tests were completely normal, so the doctor prepared me with the news that I would most likely be admitted as blood cultures take up to 48 hours (or longer) to grow.

It got placed in January….and we now know that a port is not the best kind of vein access for me because I have to get accessed every single day for my IV infusions….this meant that the port needle had to stay in my chest all the time which is a higher risk for infection, even though the needle did get changed once a week. You may think, “Doesn’t a regular central line stay in all the time, too?” Yes, it does, but it’s not pulled out and a new one isn’t inserted every week like a port needle…each time a port needle is inserted, there’s a higher chance for bacteria to get inside…hope that makes sense. :/ Usually, patients with ports aren’t accessed every day…they may use it a few days in a week, but then the needle gets removed for a little while afterwards and is not used at all.

The infectious disease team started caring for me in addition to the hospitalists….they put me on 2 very aggressive IV antibiotics. Early each morning around 3:30-5:30 AM, I had to get poked for blood work. IV therapy also had to place IVs in both of my arms because the IV antibiotics (along with my regular IV nutrition and magnesium) were so hard on my veins. It was extremely painful to infuse such strong medications in my small veins.

On Monday (7/3), the infectious disease specialist called my GI dr. to see if there was any way I could get off TPN and just do tube feeds, but my GI dr. explained how I couldn’t stop it at all because I need the nutrition, IV fluids, and magnesium.

Even while I was inpatient, the doctors ordered something called a “calorie count” to see how many calories I eat orally in a day. They figured out that I eat around 500 calories on average per day, and I would need to eat much more than twice that to not need TPN.

At first, Infectious Disease wanted to try and save my port (i.e., not remove it) because needing to remove and replace ports/lines means less and less vein access down the road due to scar tissue, but after consulting with my GI dr. and the hospitalists, they all agreed that it was best to remove it and place a new central line.

I’m so thankful I didn’t have doctor appointments this week as our upstairs bathrooms are getting remodeled (it’s so very loud, and I don’t get my normal rest) on top of all this. Next week, I do see my physical medicine dr. and my GI specialist..

taking a short walk for the first time this hospital admission

a therapy dog came to visit me, and it was so much fun!

my IV and tube feeding pumps.

feeling sore after having my new central line placed.

this is what my IV antibiotic looks like! lol

Hard month.

Thu, 22 Jun 2017 04:12:00 GMT

“I have learned that faith means trusting in advance what will only make sense in reverse.”

~Philip Yancey

Hello friends,

Oh, where to begin??

We think we know why the pain was extremely severe. It might have been because my CBD oil ran out, and I didn’t buy more. Maybe the oil does help a little bit.. So I did go ahead and buy another bottle.

I had a follow-up with my GI specialist last week. He added D5 (dextrose) to my daily IV Magnesium bags. He wants me to try this tincture of 9 different herbs that often helps his GI patients. We also found out that my blood phosphorus level was elevated, even though it has never been high (I get it checked every single week). So he had the mineral taken out of my IV nutrition, and he’ll continue to monitor my labs.

This past Monday, I saw my nephrologist, and she ordered a bunch of tests to figure out if my kidney function is getting worse as a certain marker has slowly crept up. Elevated phosphorus can also indicate worsening kidney function. Even if the tests return normal, she’s glad she’ll have a baseline now.

Today I had an appointment with my pain dr. She’s going to start me on a very strong pain patch so that my body can have a break from the current medication I’ve been needing to take every day. Praying it will work just as effectively!

This month has been so very rough. I was in tears at one point because the pain was unbearable and all over. :'( I had to keep crying out to the Lord for His grace to make it to the next day.

Mitochondrial genetics appointment.

Fri, 02 Jun 2017 03:40:00 GMT

Hello friends,

In a nutshell, he explained that I have a multi-factorial (polygenic) mitochondrial disease which means it’s not just one gene mutation causing the disease—it’s a combination of gene variants that are contributing to my symptoms. He believes the CHAT variant I have is modifying the TRAP1 (TNF receptor-associated protein 1) gene. In his words, TRAP1 is a mitochondrial chaperone that is believed to protect mitochondria from the effects of reactive oxygen species-related damage. Having CHAT and TRAP1 together is much worse than if I just had one or the other. He said patients with both are in bad shape. I have intestinal failure and many other things going on. He agrees that my mitochondrial disease is progressive. In his practice, 90% of his patients improve or stabilize with his treatment and 10% don’t…

He’s putting me on high-dose co-factors (antioxidants) and supplements. He wants my blood CoQ10 level and blood “free and total” carnitine level checked. Normal blood CoQ10 is under 4, but he wants my level to be way above 4 because he has found that a higher level is much more effective to help. Once I email him the blood results, he will tell exactly how much of each antioxidant I need to take.

He stated that I shouldn’t go more than 2 hours without eating because fasting makes everything worse.

He wrote up a very long report for me and my doctors which is so helpful! He wanted to see me back in 6 months, but we’ll see him in a year instead because it gets expensive traveling and because I still see my mito dr. in San Diego.

The Blue Boy

The Huntington Library and Botanical Gardens in Pasadena was a highlight of the trip!!

the Gutenberg Bible!!

_______________

Time.

Fri, 19 May 2017 03:27:00 GMT

Hello friends,

I don’t know what’s up ahead….but I will just keep doing what I’ve been doing the past several years and not give up. Mito can take away so much, but what it can’t do is take away my hope in Christ.

“….But I trust in the Lord. I will rejoice and be glad in your steadfast love, because you have seen my affliction; you have known the distress of my soul….you have set my feet in a broad place…

Be gracious to me, O LORD, for I am in distress; my eye is wasted from grief; my soul and my body also…

But I trust in you, O LORD; I say, ‘You are my God.’

My times are in your hand .

Be strong, and let your heart take courage, all you who wait for the LORD!”

~Psalm 31:6b, 7, 8b, 9, 14, 15a, 24

It’s so comforting to know that my times are in God’s loving hands. Past, present, and future. He sees my affliction and knows every time my soul is in distress (verse 7). And He does something about it—He “sets my feet” firmly on the ground (verse 8b) so that I don’t stumble or keep falling from the heavy weight of this hard path. So, as the end of this Psalm says, I will be strong and let my heart take courage after hearing this news. I won’t despair.

________________

I said goodbye to my palliative care dr. this past Monday. I so wish he didn’t have to go, but he’s leaving OHSU to become the director of the Serious Illness Care Program at Harvard which is a very prestigious position….my pain dr. told me that Boston was the first to start Palliative Care.

On Tuesday, I had a follow-up with my pain dr. My body has been becoming tolerant to my current pain med, and it’s not working as well—she said it’s good to rotate pain meds around every 3-6 months to prevent tolerance. I have to soon start a certain med (which also helps pain) that is good for resetting the opioid receptors.

Overall, this appointment was really helpful, and I’m so thankful she’s not going to move or leave OHSU!

Today I had my monthly follow-up with my GI specialist. I lost more weight, even though I’ve been increasing tube feeds. He said my oral intake needs to include more carbohydrates and fats, and he’s also adding an extra day of lipids (fats) to my IV nutrition. I mentioned on FB how I threw up such a large amount one evening last week, even though I hardly ate or drank anything that day (I told him I was puzzled why I threw up so much without eating barely anything). He explained that our stomachs make 1-2 quarts of stomach juices per day, and the small intestine is supposed to absorb it. But because my small intestine (in addition to my stomach) is not working well, that’s why I just threw everything up. He prescribed me another anti-nausea medication to take when my regular one doesn’t resolve the nausea.

Next week, my family and I leave PDX to travel to California! My appointment with my mitochondrial geneticist in Pasadena is on the 25th and will last 3 or more hours. :O This is my first time seeing him in clinic, although I have met him before at the UMDF symposium. So grateful for his willingness to see me and go over all my gene mutations and variants of uncertain significance. Praying he can offer some other types of treatments to slow the disease progression.

Trusting.

Thu, 27 Apr 2017 04:17:00 GMT

“It is a glorious thing to know that your Father God makes no mistakes in directing or permitting that which crosses the path of your life. It is the glory of God to conceal a matter. It is our glory to trust Him, no matter what.”

~Joni Eareckson Tada

Hello friends,

Here are all the other numerous medical updates:

Gastroenterology–

Orthopedic Surgery–

Nephrology–

Physical Medicine–

ENT–

________________

As you can see, so much keeps happening. It’s a lot for me to process, but I am trying to continue rejoicing in suffering. It’s definitely not easy, and I wonder if/when something big will ever happen that’s not BAD news. But, as I keep plugging away, I will rejoice in my sufferings, “knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us” (Romans 5:3-5).

Continuing to put my hope in Christ!

So much to process.

Sat, 25 Mar 2017 03:41:00 GMT

“Sometimes when we get overwhelmed

we forget how big God is.”

-A.W. Tozer

Hey everyone,

My monthly GI appointment was last week. I lost weight, so I have to try and increase my tube feedings even more….he ordered a feeding pump backpack for me so that I can do tube feeds when I go out and not just do it when I’m at home. If I can’t maintain my weight, my GI dr. said he’ll have to increase the calories in my IV nutrition when I see him again next month.

Sometimes, everything seems so hopeless and gets more and more discouraging with bad news on top of bad news…..but Jesus is my Hope and Strength. He will ALWAYS be!! He knows what I’m going through. He cares. So I won’t let all this get me down!

One year ago today.

Wed, 08 Mar 2017 05:10:00 GMT

“The manifestation of God’s glory is not limited to miraculous healing. God refused to remove the apostle Paul’s “thorn” of suffering so His grace might be seen and proven sufficient. Though no one would choose hardships, there is no greater proof of God’s power and grace than when He gives a person supernatural strength within the pain. Such men, women, and children experience God’s glory in a way which most of us know nothing. Often this brings greater impact from God than would a miraculous healing!”

~Glory in Suffering

Hello friends,

Oh it’s been rough. I mentioned in my previous post how I haven’t been feeling my normal. On February 23rd, I had an evening appointment with my PCP’s colleague at OHSU, and he ended up directly admitting me to the hospital. I was so thankful to the Lord I didn’t have to be seen in the ER and also that I didn’t have to share a room with anyone! The inpatient team followed my mitochondrial protocol letter and aggressively treated me with bag after bag of IV fluids with D10. I also was given daily infusions/boluses of IV carnitine. My potassium was still lower than my normal, so I was given additional liquid potassium through my feeding tube. My GI dysmotility was horrible (I had terrible nausea and vomiting), and I had no appetite—the doctors wanted to work on that before discharging me. So I was in the hospital for 4 nights.

We don’t exactly know what caused this “mito crash,” and I’m still not feeling back to normal (I continue to have an occasional achy back and episodes of nausea……but I really don’t want to have to go back to the hospital!!).

He also ordered a dual-energy x-ray absorptiometry (DEXA) scan to check my bone density since I fractured a rib from coughing.

Regarding my cough that I’ve had since November that’s still not going away, he’s concerned that I continue to need my inhaler and other cough medications. He wants me to email him this week or next if there’s no change, and he will refer me to ENT.

I do see my pulmonary dr. next week as well, so we’ll get his input.. I have a follow-up with my GI dr. the same day, too.

I also have an appointment with my OHSU palliative care dr. this Friday. It’s been super busy! I did order CBD hemp oil at the recommendation of the naturopathic physician who works closely with the pain dr. I saw at UCSD medical center in January. It’s very expensive for just 100 ml. : / Unfortunately, the company has a high volume of orders during this time, so mine won’t arrive until around March 20th..

Pain and Potassium Problems.

Thu, 23 Feb 2017 04:48:00 GMT

“I choose to believe that God is good even though He doesn’t heal me. That when life goes wrong and I suffer, He is with me. To join with the prophet to sing “He deals wondrously with us!” even when the wonderful life I expected doesn’t turn out the way I’d hoped.” |

He Speaks in the Silence

Hello everyone,

Catching up

Wed, 08 Feb 2017 05:21:00 GMT

Hello friends,

Mitochondrial Medicine —

He wants me to have yet another genetic sequencing panel done (hopefully my last!), but this one will look closely at all the depletion genes and even check for deletions.

All in all, it was a good appointment and a lot to take in again. My muscle biopsy results are much worse than my first biopsy back in 2014, and we don’t know if this is disease progression or what..

Pain Medicine —

On January 18th, I had an appointment with the medical director of the UCSD pain center. It was very helpful. He gave us a lot of information on medical cannabis and how much it can help nerve pain, muscle spasms, and more. We have endocannabinoid receptors all throughout our bodies, and that’s why patients usually respond well to medical cannabis. I hope to eventually trial CBD oil (FYI, I’m not interested in the psycho-active types of cannabis..lol ;). This pain dr. works very closely with a Ph.D. in botanical medicine/horticultural studies. She actually is a naturopathic physician and can do phone appointments with patients who live out of state. So I have a phone appointment with her on February 23. She’ll help me with dosing and tell me what type of CBD oil is best for the small fiber neuropathy that I have.

General Surgery —

I had to go without IV nutrition and IV magnesium for 3 whole days. I was finally able to get an appointment at the OHSU infusion clinic this past Friday, and by God’s grace, the nurse was able to access my port on the first try! We’re not sure if it’s because they used a power port needle with a bigger gauge (my home health infusion company only carries a basic port needle). I wish the needle didn’t have to be so thick, tho!

Hematology —

Neurology —

I saw my neurologist on January 30th, and she is going to work on getting insurance authorization for the depletion gene sequencing panel that my mito specialist wants completed. She is also upping one of my medications that I take for my headaches as they are not quite under control yet..

Gastroenterology —

_________________

This week is Feeding Tube Awareness 2017!!

I also have a port implanted in my chest. Every single afternoon, I receive 4 grams of IV magnesium through my port from about 4-8 PM. And every single night, I infuse TPN (IV nutrition) through my port. After each infusion, I have to flush my port with saline and heparin. Before my feeding tube and all the central lines I’ve had, I was malnourished, chronically dehydrated, and labeled “failure to thrive.” It’s hard having a line and a tube coming out of me….and it’s hard being hooked up so often….but I’m very thankful I’m no longer dehydrated and malnourished!

Not good news

Tue, 24 Jan 2017 04:53:00 GMT

“God is closer than your troubles and stronger than your fears.”

~Joni Eareckson Tada

Would appreciate your prayers. Today I was thrown a curve ball, and it hit me in the head…

I had 3 appointments today and am so exhausted! I have pre-op tomorrow, a home health nurse visit on Wednesday, 2 more appointments on Thursday, and surgery on Friday!

I know God is in control. But I just wish I could catch a break………But tomorrow is a new day……His mercies are new every morning. I’m ever so thankful for His grace and compassion.

Upcoming

Mon, 16 Jan 2017 04:35:00 GMT

“Everything you face in your life and overcome with God’s strength today prepares you for what will cross your path tomorrow .”

~Joni Eareckson Tada

Hello friends,

this is what a huber needle looks like.. :O

I already had an appointment with my general surgeon this past Wednesday. I have to first see the pre-op people and get another venous duplex ultrasound study done to look at all my veins which will help my surgeon know where to place the port. The scan will also check up on the clot in my right arm that’s been there since 2015.

Surgery is set for January 27th. They’ll also remove my central line and replace my jejunostomy feeding tube. Glad I don’t have to be awake for that as it’s really painful.

Reflections on this past year 2016

Sun, 01 Jan 2017 05:15:00 GMT

2016 was a hard year. The hardest yet. But as I think back on these last 12 months, I can’t help but see the Lord’s hand through all of it. There were so many changes and times of discouragement, but Jesus Christ in His unfailing love went before me every single day and gave me courage to push through.

This year alone, I had:

6 hospital stays

4 ER visits

2 ambulance rides

95 doctor appointments (I had 51 last year)

5 weeks of IV iron infusions

41 physical therapy appointments (I had 21 last year)

51 home health nurse visits and 51 central line dressing site changes

2 trips to Seattle in February and June to see my pain dr. at the University of Washington

1 trip to San Diego in February to see my mitochondrial disease specialist

Sepsis (my blood grew coagulase-negative Staphylococcus Capitis) in March

1 central line removal procedure

2 CT scans (head and chest)

1 heart echocardiogram, 1 venous duplex study, and 1 kidney/bladder ultrasound

3 MRIs (spine, hip, and brain)

2 pulmonary function tests

1 feeding tube replacement

2 feeding tube infections which required “incision and drainage” both times

1 central line replacement surgery

7 IV and oral antibiotics given throughout the year for the different infections (Cephalexin, Cipro, Vancomycin, Cefazolin, Ceftriaxone, Augmentin, and Amoxicillin)

1 muscle biopsy which caused a very large hematoma that lasted more than 5 weeks

1 hip surgery (labral tear repair)

4 urinary catheterizations in the hospital

2 ultrasound-guided hip steroid injections

1 hearing test

1 metabolic cart test

6 chest and hip x-rays

2 bilateral lumbar sympathetic nerve blocks and 1 femoral nerve block

Countless blood draws for blood cultures and labs at home each week and with each hospital stay

The picture above reminds me of this past year. There were numerous days when life seemed so blurry and hard to understand………but if I looked at it all in light of eternity, everything came into focus. I have learned that putting Christ first in life makes things more clear.

I hope 2017 is easier with fewer appointments and hospital stays and surgeries and tests…….. But even if it isn’t, I know this for sure—the Lord is faithful and always gives me hope and strength to face the unimaginable, the constant pain, the challenges, the health battles, and much more.

Love, Kerissa

Under the weather

Thu, 08 Dec 2016 04:55:00 GMT

Hey friends,

I’m really trying to increase my tube-feeding and not just do it one time a week… If I can eventually receive a large enough volume total each day, then we can maybe talk about a TPN break!

In addition to the nerve block, I have a lot of appointments coming up with Palliative Care, Neuro-otology, Internal Medicine, Nephrology, and Physical Therapy. I’ve had to cancel PT for 2 weeks now. My hip and muscles are all super weak from being sick…progress keeps getting set back. But I’m so grateful for my therapists who continue to work with me, despite my complex medical case!

Neurology and physical therapy updates

Wed, 16 Nov 2016 04:19:00 GMT

“Pain is a forest we all get lost in
Between the branches, hope can be so hard to see
And in the darkness, we’ve all got questions
We’re all just trying to make sense out of suffering, but

You say I am blessed because of this
So, I choose to believe
As I carry this cross, You’ll carry me…”

~Carry Me by Audrey Assad

Hey friends,

She said I really need to be seen by a geneticist who can look through all my genetic variants and sort things out even better. She’s going to try and get in touch with the mitochondrial geneticist in Pasadena, CA (the dr. that I met at the UMDF symposium this past June) to discuss my case and see where I am on his waiting list.

I just want to close with this beautiful verse I read from Isaiah last week. So uplifting and refreshing. The Lord always goes before me and carries me through the pain!

Happy Thanksgiving, friends.

“In all their suffering he also suffered,
     and he personally rescued them.
In his love and mercy he redeemed them.
     He lifted them up and carried them
     through all the years.”

~Isaiah 63:9

“Afflicted in every way…”

Thu, 27 Oct 2016 03:49:00 GMT

“Joy is not necessarily the absence of suffering. It is the presence of God.” ~Sam Storms

My feet have been burning horribly lately. I don’t know if the nerve pain is getting exacerbated by the change in weather or what. My pain dr. did switch up one of my medications a little while ago, so it could be because that is not at a therapeutic level yet.

Physical therapy progress for my hip is still not where my therapists would like it to be. The aching pain keeps me up at night. I take some of my other pain meds, but that doesn’t always help, too. I do have my ultrasound-guided hip steroid injection scheduled tomorrow, so they’re hoping it helps the pinching pain/stiffness.

I recently saw my primary care doctor, and I’m so so thankful for her! I’ve never had a PCP like her! She has been doing so much to try and make my coordination of care better. She’s even working directly with the ER department at OHSU so that my ER mitochondrial protocol (that my neurologist wrote up last year) is implemented faster whenever I do have to be taken there.. She’s going to “note” that I shouldn’t share a double room when I need to be admitted. Of course, some of this will be out of her control, but she would like the ER doctors to have a step-by-step guide for them to try and follow.

A little while ago, I read a familiar passage in chapter 4 of 2 Corinthians, but this little phrase especially stood out to me this time: “afflicted in every way…” This kinda rings true for me because mitochondrial disease affects so much. But do you know what’s right after those 4 words? “But not crushed.” I looked up the definition of crush , and it means, “to deform, pulverize, or force inwards by compressing forcefully.” All these symptoms I experience can be so heavy to handle (physically, emotionally, and spiritually). But just a few verses later, these afflictions are described as light . The complete opposite! All this happening will not be able to “crush” me and weigh me down because I have the Lord Jesus on my side. He, in His grace, fills me with strength to fight this health battle daily. When the discouragement sometimes creeps its way in, I try to remember these verses, not lose heart, and view everything that happens in light of eternity. Mito (and all that comes along with it) is preparing for me an eternal weight of glory beyond all comparison (2 Cor. 4:17)!!

Partial muscle biopsy results (and other stuff..)

Tue, 11 Oct 2016 03:57:00 GMT

Hey friends,

A lot has happened since I last posted..

I saw my GI dr. the day after I got discharged. I had a pulmonary resting energy expenditure test done on Sept. 19th to calculate how much CO2 my body burns, how much protein I need, etc. But he never received the results! He’ll either call me or just wait until my next appointment which is at the end of this month. Based on the results, he’ll adjust my IV nutrition. When I was in the hospital, the hospitalist recommended I receive 1 liter of IV fluids (vs. my usual 1/2 a liter) a day for one week. So my GI dr. ordered that. I only have 2 more days of this regimen! It’s hard lugging around a very heavy liter of fluids in addition to the IV pump for a total of 6 hours a day. :/

I had my brain MRI, and it was a clean scan. I know that’s good news, but I’m still having a throbbing, right-sided headache. I told my neurologist, and she said there’s often no clear explanation for why chronic headaches get exacerbated. It could be so many reasons. I have a follow-up appointment with her at the end of the month to figure out what to do.

Today I saw my palliative care dr. We discussed all that happened in September and talked about different ways to manage the headaches/pain better. It’s definitely a trial and error process!

Oh yes, before I keep forgetting to tell, I received my initial muscle biopsy pathology results from OHSU (these aren’t the Baylor tests….still waiting to hear if they got authorized by my insurance…my neurologist had it all taken care of with the medical director of my insurance, but the director forgot to document everything, so my dr. has to start the process all over again!).

OHSU performed basic histology and ultrastructural studies, and sadly, the results are a lot worse than my muscle biopsy histology results done at UCSD back in 2014.. It’s kind of hard to explain, but in 2014, my basic histology was normal…it was only when they ran more tests that they found the mtDNA depletion (a significant one!). But the histology test done at OHSU in August of this year showed “diffusely pale” tissue which indicates that I hardly have any mitochondria in my muscle. :/ The pathologists noted “paucity of mitochondria.” Paucity means scarcity. A lipid depletion was also found, but I don’t know what that means specifically in my case.. Since my histology shows tissue evidence of a mtDNA depletion, that probably means my depletion results (once it’s completed at Baylor!) will be even worse than the 2014 depletion study.. We don’t know if all this means disease progression or what.. I will be seeing my mitochondrial disease specialist in San Diego again this coming January or February to go over everything.

Mitochondrial Disease Awareness Week ~ September 18-24, 2016

Thu, 22 Sep 2016 03:52:00 GMT

Hey guys,

I just thought I’d go right in and share a little bit about mito in this post and how it affects so much of the body.

-Severe fatigue (I sleep 16-18 hours every day)

-Chronic neuropathic pain

-Use of a BiPAP machine due to sleep apnea

-Myoclonus (muscle jerks day and night)

-Nystagmus/oscillopsia (my eyes oscillate which feels like an earthquake in my head)

-Hyper reflexes due to a problem in my spinal cord

-Generalized slowing on EEG

-Headaches

-Myogenic bilateral ptosis (drooping eyelids)

-Left eye ophthalmoplegia (“paralyzed” eye muscles)

-Hypotonia (low muscle tone)

-Muscle weakness

-Exercise intolerance

-Hypoglycemia (low blood sugars)

-Dysautonomia

-Low blood pressure which causes high heart rate and lightheadedness

-Esophageal dysmotility

-Gastroparesis/intestinal dysmotility

-Nausea/vomiting

-Abdominal pain and distention

-Chronic constipation

-Failure to thrive

-IV nutrition every night through a central line in my chest

-A jejunostomy feeding tube in my abdomen

-Daily IV magnesium with potassium for hypomagnesemia (chronically low blood Mg levels from renal magnesium wasting)

-Hives/itching due to mast cell hyperactivity

-Tinnitus (ringing in ears) with partial hearing loss that comes and goes

-Anemia

-Neurogenic bladder

-Tremor (especially noticeable with daily activities that require fine motor skills)

Because of mito, I have more than 20 different specialists who care for me:

Neurology
Gastroenterology
Internal Medicine
Pain Medicine
ENT
Neuro-urology
Orthopedic Surgery
Physical Medicine/Sports Medicine
General Surgery
Hematology
Neuro-ophthalmology
Allergy/Immunology
Physical therapy
Mitochondrial Medicine
Sleep Medicine
Pulmonary Medicine
Cardiology
Hepatology
Nephrology
Podiatry
Palliative Care
Naturopathic Medicine

It can get overwhelming to have so many symptoms and so many doctors.

But as you read all this, please don’t feel sorry for me.. Rather, I’d like you to be aware of this disease and how it dramatically affects a life.

Just “some” of the mitochondrial diseases that are out there…!

But I also am filled with joy that I can share in Christ’s sufferings (1 Peter 4:12-13). And I remember that the Lord has chosen this path for me. I may not know the reason why in this life on earth, but I know that He is good, and I trust Him (Romans 8:28).

I can’t remember if I posted this before, but one of my close friends shared this beautiful quote with me—it sums up everything perfectly:

“Perhaps there is also something in your life causing you to question God. Do you find yourself saying, ‘I do not understand why God allowed my loved one to be taken. I do not understand why affliction has been permitted to strike me. I do not understand why the Lord has led me down these twisting paths. I do not understand why my own plans, which seemed so good, have been so disappointing. I do not understand why the blessings I so desperately need are so long in coming.’

Dear friend, you do not have to understand all God’s ways of dealing with you. He does not expect you to understand them. You do not expect your children to understand everything you do—you simply want them to trust you. And someday you too will see the glory of God in the things you do not understand .” ~J. H. M.

This awareness week is halfway over, but every blog post I write, I want to continue bringing awareness to this progressive and terrible disease. So many babies, children, and adults suffer with mito, and I know there are many medical professionals and people who haven’t even heard of mito! Before this journey started, I never even knew there was a disease like this where you can look so normal on the outside but have so much wrong on the inside..

A rough month.

Wed, 31 Aug 2016 03:24:00 GMT

I just wanted to say a huge thank-you for all of your prayers, cards, flowers, and encouragement! I’m so thankful for all of you. You guys brighten up my life.

I’m sorry it’s been almost a month since I last blogged. Post-op recovery from my hip surgery and muscle biopsy has been extremely rough, and I’ve had to literally draw all of my strength (physically, mentally, and spiritually) from the Lord! This month of August, I had 18 appointments on top of surgery and hospital stays. But the Lord is full of grace, and He sustained me through it all.

I’m still short of breath and so exhausted…I saw my palliative care dr. yesterday, and even though the ortho docs said I only lost a minimal amount of blood from surgery, he thinks my blood counts dropped because I have such terrible, severe bruising all over my upper leg from surgery and a huge, bulging hematoma near my muscle biopsy site. He estimates that I lost 2 units of blood in my leg from all this.. :/ The hematoma/bruising is so very painful, and it’s putting a lot of pressure on a nerve in my leg. Still having deep, aching pain from it.

Regarding the anemia, my palliative care dr. thinks it’s just taking a while for my bone marrow to bounce back from surgery, and he hopes my counts will go back up without treatment.

Before: the raised area in the middle-ish is cartilage damage/softening.

Part of the torn labrum. The doctors sutured it down. That white edge to the way left is my femur (thigh bone)!

Pre-Op appointments

Wed, 03 Aug 2016 03:47:00 GMT

This past Friday, I had my Orthopedic Pre-op appointment. I saw my surgeon’s physician assistant, and she explained what’s involved with the surgeries, the extensive rehabilitation protocol, and much more. In addition to the hip labral and cartilage repairs, my surgeon will possibly be doing a femoral neck osteoplasty and acetabular rim trimming (this depends on what she finds inside my hip joint). During surgery, the doctors will do a femoral nerve block for pain management purposes which will hopefully last 1-2 days.

After surgery, I have to take an anti-inflammatory medication for 60 days to prevent something called heterotopic ossification (i.e., new bone growth). I’ll also need to take aspirin for 30 days post-op to keep blood clots from forming.

This afternoon, I had my Pre-op appointment with the peri-operative medicine dr. for the upcoming hip surgery and muscle biopsy (scheduled for next Friday the 12th!). The doctor was very thorough—she went over all my medical conditions/symptoms to make sure I’ll have everything needed medically for the day. She’s going to email several of my specialists to figure out how much IV magnesium I’ll need that afternoon for the hypomagnesemia, how much IV nutrition I should receive overnight, etc.

I have lots of upcoming appointments before the 12th—ENT, Urology, Pain Medicine, Internal Medicine, and Nephrology. So it’s been busy!

Blood tests

Thu, 14 Jul 2016 03:19:00 GMT

Oscar Wilde wrote: “In this world there are only two tragedies. One is not getting what one wants, and the other is getting it.” To rephrase his thought, I suggest there are likewise only two joys. One is having God answer all your prayers; the other is not receiving the answer to all your prayers. I believe this because I have found that God knows my needs infinitely better than I know them. And He is utterly dependable, no matter which direction our circumstances take us. ~Joni Eareckson Tada

Hey friends,

Can’t remember if I ever mentioned this, but I’ve been dealing with daily hives/itching for more than a year now. My eosinophils (a type of white blood cell that increases with inflammation/allergic reactions) have also been getting pretty high. My hematologist said we’ll keep monitoring this and run more tests if they get to a certain level.

I’m blessed to have a knowledgeable doctor! She knows a lot about how mast cells are related to EDS and mito. I’d explain it here, but I don’t fully understand it myself. lol

I saw my new PCP at OHSU recently, and she is amazing! She exceeded my expectations and is so kind and compassionate. She has several pediatric patients with mito! She’s going to try to make my “coordination of care” even better. I see her again the beginning of August.

This past Monday, I saw my orthopaedic hip surgeon for follow-up. She discussed the surgery in more detail and drew us a diagram of the hip socket and labrum. She explained about the risks/potential complications with surgery and wrote down the plan for rehabilitation. I have Pre-op on July 29th, and I’ll be seeing the peri-operative medicine dr. instead of the nurse practitioner as originally scheduled since my case is so complex. After surgery, I’ll be sent home with a machine called Continuous Passive Motion. This machine will move my leg passively to prevent scar tissue formation in the joint and so that my hip/leg doesn’t get stiff. I’ll have to use it for 4-6 hours a day. :O

sunset in Pacific City

me and my IV backpack

UMDF symposium recap and appointment updates.

Thu, 30 Jun 2016 03:38:00 GMT

Hello friends!

We are home! My parents and I actually got home on Monday the 20th, and I’m just now blogging. :/ The United Mitochondrial Disease Foundation symposium in Seattle was an amazing first time experience! Yes, it was rough as well because I hardly got any sleep which in turn made all my mito symptoms worse…but, the conference was hopeful and encouraging, too. I wish next year’s was going to be on the west coast again, but it’s actually going to be held in Virginia!

There’s this mitochondrial and molecular medicine geneticist near Los Angeles that I’ve always wanted to see as a patient because Complex Regional Pain Syndrome in mito is a common disease he treats. Well, back in 2014 (I think), he became medical director of Courtagen Diagnostics Laboratory where I had a bunch of genetic testing. The majority of his time is spent in research with Courtagen, but he did move to a private practice to still see a small number of patients…so private that you can’t even find his clinic online!

______________________

Now, onto the long medical update… :/

I am going to be having hip surgery on August 12th. Afterwards, it’s going to be a long healing process. She said I’ll need to have physical therapy twice a week for 3 months and then once a week for 3 more months…! I also won’t be able to bear weight on my left side for a while. I’m going to have to practice with my physical therapist (in the weeks leading up to surgery) how to get up our stairs without using my left leg. :/ I had foot surgery in 2010, but I was able to use my knees to go up our stairs!

This surgery is not going to be easy because I have muscle weakness on top of everything else, so I have to get my right side as strong as possible. But I’m looking forward to no more left hip pain!!

I have a follow-up with my hip surgeon on July 11th to discuss the surgery in more detail, and Pre-Op is on July 29th!

Hip MRI results.

Wed, 08 Jun 2016 03:26:00 GMT

On the 20th, I get to see my favorite doctor (my pain dr.) at the UWMC pain clinic again. So much has happened since I last saw him in February. I hope to get his opinion on a long-acting pain medication that my palliative care dr. wants to put me on. After I see him, the plan is to head home!

Kerissa

5 years.

Wed, 01 Jun 2016 02:51:00 GMT

On June 4, 2011, I graduated from high school. June 4, 2016 is just around the corner. It will be 5 whole years since I graduated… 5 years. It’s hard. I’m still doing the same thing—seeing doctors, going to weekly appointments and physical therapy, taking numerous medications and supplements, sleeping 16-18 hours a day, hooking up to IV fluids every day and IV nutrition every night, and fighting this battle with mitochondrial disease and a whole host of other conditions.

I wish I didn’t have to sleep so much…I wish I could go to med school and become a physician…I wish I could get a real job…I wish I didn’t have to see doctors every week…I wish I could get off of TPN (IV nutrition)…I wish I could do something other than fighting mitochondrial disease every single day.

But you know, I’ve learned that the Lord chooses different paths for every person. And this is the path He specifically chose for me. I tell you, it’s not an easy path and I wouldn’t wish it on anyone. But with this journey, the Lord gives me hope with His many promises. He says in His word that He will never leave me nor forsake me. Romans 8:28 also tells me, “For those who love God all things work together for good, for those who are called according to his purpose.” That’s what I hold on to. I won’t have answers to all of my questions in this life until I see Jesus face to face, but until that happens, I will keep persevering. I want to bring Him honor and glory!

Last Monday I saw the Palliative Care doctor. It was a long appointment discussing my whole story, all the symptoms I experience, and the headaches/neuropathic pain I deal with daily. We mainly went over how to manage the chronic pain better and how to best coordinate all of my care with my numerous specialists.

Regarding the pain, we discussed all the different pain management options—oral meds vs. IV meds, what types would be good, etc. My complex case makes it hard since pain meds worsen GI dysmotility. As a trial, the doctor is having me try a combination of pain meds that are liquid instead of pill form. He wants to see if putting liquid meds through my j-tube can be absorbed better and faster. The IV route is a last resort since that would mean being hooked up to yet another pump continuously. He has been talking with my pain doctor, and they both think a long-acting pain med would be good to try if this trial isn’t helpful. Long-acting meds are heavy-duty, so I’ve been researching/comparing them. I also hope to discuss this more when I see both of them the end of June.

The following Monday, I see the Orthopedics specialist to go over the MRI results. Praying the results help my doctors pinpoint the exact site of the hip pain!

“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” Romans 8:18

This month.

Fri, 20 May 2016 20:23:00 GMT

My nephrologist has been trying to stabilize my blood Mg levels with oral Mg on top of the infusions, but nothing is really helping.

The cultures from my j-tube infection grew both gram negative and gram positive bacteria—haemophilus parainfluenzae (not related to the flu…lol) and veillonella parvula…! My GI surgeon needed to switch me to a different, more sensitive antibiotic. I had to pack the wound site with gauze for a whole week which was no fun.

Hard fight

Tue, 10 May 2016 02:11:00 GMT

Would appreciate your prayers! I know I’ve said this before, but this journey just gets harder and harder… I often wonder what will happen next, but I’m reminded to take each day as it comes. The Lord is full of grace, and I will lean on Him.

This hip problem is due to more than one thing—muscle weakness from the mitochondrial disease, loose joints from my connective tissue disorder Ehlers-Danlos Syndrome, etc.

This month I have a total of 16 appointments so far…! I think this is my record as I usually only have 11 appointments at the most… On top of that, I also have my regular 4 home care nurse visits this month to get weekly labs drawn and my central line dressing site changed.

So much is being thrown my way, but I will continue to rely on the Lord and draw strength from Him! I will keep trusting Him. He is faithful and good. I’m thankful that I can do all things (and face anything!) through Christ who strengthens me. I won’t give up!

“I want my life to be only Christ in me…”

Fri, 29 Apr 2016 03:07:00 GMT

Hello friends,

All the iron labs that my GI specialist ordered came back low…one of them is almost down to zero.. So I have to get 5 weeks of IV iron infusions to correct this iron deficiency anemia. I have daily headaches, dizziness, and pale skin from being anemic, so I’m looking forward to feeling a little better soon. It will take a while for my red blood cells to make new ones with the iron, though..

I’m still working on increasing my j-tube feeds, but it’s slow progress. Anemia on top of mitochondrial disease makes me extremely tired, so the motility in my whole GI tract has been poorly lately.

Soo true.

Keeping On

Wed, 06 Apr 2016 08:05:00 GMT

In the meantime, if insurance pre-authorizes it, I will be switching to an even stronger, anti-convulsant pain medication. I’ll also be getting another bilateral lumbar sympathetic nerve block which is a procedure where the doctors inject anesthetic medications around the sympathetic nerves to temporarily “block” them and try to decrease the nerve pain. She’s booked out so it won’t be until the end of May. My pain dr. also referred me to Palliative Care, and I now have an appointment with one of the palliative doctors next month.

Next week I have appointments with Wound Care (for my raw feeding tube site) and Cardiology.

Thank you for checking in!

My first blood infection.

Thu, 24 Mar 2016 02:42:00 GMT

Hello all,

On February 26th, I started dealing with vomiting. We didn’t know what was going on, and my GI specialist was unsure if this was due to worsening GI dysmotility.

I’m weak and exhausted but slowly recovering here at home. I’m also still on IV antibiotics, and the Infectious Disease doctors will let me know when I can stop them….they are looking at my labs weekly to see if my body is ready to be off antibiotics. I have a follow-up with them in clinic on April 6th.

Next week, I have 3 appointments with Sleep Medicine, Pain Medicine, and Nephrology. My nephrologist did discover that my kidneys are spilling magnesium and potassium which is why my blood MG and K levels can’t hold steady. What’s going on is similar to something called Fanconi Syndrome (this can be seen with mitochondrial disease). She’s looking into starting me on a medication to help my kidneys hold onto Mg, but it lowers blood pressure. Since I already deal with low BP, she wants me to get my BP checked for several days (right before I get up from sleeping). She’ll see what my numbers look like, and we’ll discuss the next step when I follow-up with her next Thursday.

Hello, March.

Thu, 03 Mar 2016 04:32:00 GMT

February was very rough, and I’m glad I can now look back on it.

I followed up with my GI surgery team the day after I got back from San Diego. To my surprise, I had to have a small unexpected surgery called “incision and drainage” at the site of my j-tube infection. It was very painful, and for several days after that, I had to pack the wound with gauze twice a day. The resident cultured the abscess, and we received results the same day I was in Seattle on the 22nd to see my pain dr. My cultures grew a bacteria called Enterobacter Colacae Complex, so I was switched to a different antibiotic. I was on antibiotics for a total of 11 days. Thankfully, the infection is now gone, but my j-tube site is raw and super painful due to bile leakage. This has been a problem since November, so my GI surgeon referred me to Wound and Ostomy Care. Haven’t seen them yet, but hopefully soon..

Neuro-Ophthalmology :

Pain Medicine :

Gastroenterology:

I had a GI follow-up after we got back from Seattle, and my dr. ordered lots of blood work to be done to check on all my vitamin levels and minerals since I’m on TPN. We should get results on Friday.

Hepatology:

My GI dr. spoke with my hepatologist a couple weeks ago. He said that my hepatologist will be calling sometime soon to tell me that he wants to repeat some Wilson’s Disease tests. He wants to see how the Zinc therapy is going and if it’s helping remove copper from my body.

Nephrology:

I saw my nephrologist for the first time this past Monday, and she is amazing! So blessed to have her on the team. She ordered lots of lab tests to be done tomorrow to try and get to the bottom of why I’m dealing with Hypomagnesemia. I really want to cut back on my IV fluids with magnesium, but that’s going to be hard to do if my level keeps dropping. Hopefully these tests give us some answers. She’s looking into 2 kidney disorders, and I pray I don’t have either. I don’t think I can take another diagnosis!!

Pulmonology:

Busy busy.

Fri, 05 Feb 2016 04:45:00 GMT

Hey guys,

This month is crazy busy. I have 4 appointments next week (physical therapy, kidney/bladder ultrasound, neuro-ophthalmology, etc), and then my parents and I leave for San Diego on Monday the 15th. The follow-up with my mitochondrial disease specialist is on the 16th. We come home on the 18th.

After we return from Seattle, I have my GI follow-up that Friday. I’m glad he’ll be back….he’s been gone (out of the country) way too long!

Until then!

Kerissa

Trekking on.

Tue, 26 Jan 2016 04:01:00 GMT

Hey friends,

My mom, dad, and I leave for San Diego in exactly 3 weeks! I’m glad I’ll be seeing my mitochondrial specialist—I need to update him on all that’s happened!

News we didn’t want to hear.

Mon, 18 Jan 2016 02:38:00 GMT

Hey friends,

He’s not exactly sure what’s going on and why my liver suddenly took a turn for the worse…is it from Wilson’s Disease….or is it from being on TPN (IV nutrition)….or is this something totally different?

We also found out that my magnesium and potassium levels dropped yet again. We’re not sure why that’s happening as well because I continue to receive extra Mg and K in my supplemental IV bag of fluids which is infused through my central line every evening. Is this liver-related, or is there a problem with my kidneys not being able to hold onto Mg?

There have been lots of questions lately with few answers. The day after my GI appointment, I saw the hepatologist (liver specialist). He wants to pursue genetic testing for Wilson’s Disease because some specific things related to the diagnosis are puzzling him. He also ordered lots of lab work to rule out common illnesses and figure out why I’m not feeling normal. One of the blood tests came back high which indicates that I either have autoimmune hepatitis, chronic active hepatitis, or mononucleosis. Unfortunately, my GI dr. is currently out of the country for 4 whole weeks, so I’m waiting to hear what the hepatologist thinks about the latest finding.

I’m thankful to the Lord for His mercy and compassion. He is still God, even when things aren’t going well, even when you receive bad test results, even when you don’t feel 100%. He is mighty!!

A rough start to the new year.

Sat, 09 Jan 2016 05:06:00 GMT

All last week, I wasn’t feeling my normal and just felt “off.” I kept losing my balance and had nystagmus/dizziness. This past Saturday, I was feeling so bad with horrible body aches, headache, and nausea, so I ended up going to the ER to make sure I didn’t have a central line infection.

The ER docs followed my mitochondrial specialist’s ER protocol letter, so I received through my central line a dose of IV carnitine and more than 3 liters of continuous D10 with sodium chloride and potassium. I also had a ton of labs drawn. It turns out I was nearing a metabolic alkalosis state (opposite of metabolic acidosis), and I was diagnosed with hypomagnesemia (lower-than-normal levels of magnesium which is an electrolyte). This happened even though I still receive daily IV fluids with extra magnesium for 2 hours…!

I just had labs drawn with home health 3 days before Saturday which showed some abnormal things, but my magnesium level was fine. So it dropped quickly. Hypomagnesemia can be very serious and cause seizures and even cardiac arrest, so my GI dr. is glad I went to the ER to get checked out.

To correct the low magnesium, the doctors gave me 4 grams of IV magnesium. That brought the levels back up, but they soon dropped again. So I had another magnesium infusion early Monday morning before I got discharged.

My GI dr. thinks the prescription zinc I was taking 3x a day for Wilson’s disease caused my body to get depleted of magnesium. But, if my MG levels start dropping again while off of zinc, then he said something else is going on.. I had weekly labs drawn yesterday.

This coming Tuesday, I have a monthly follow-up with my GI dr. Wednesday, I finally see the hepatologist (liver specialist) after waiting 2 long months. And Thursday, I have an appointment with my neuro-urologist. It’s gonna be busy! :/

Reflections on this past year 2015

Fri, 01 Jan 2016 01:24:00 GMT

This year alone, I had a total of:

I look at all these numbers, and I’m humbled by God’s grace—I truly couldn’t have made it through another hard year without the Lord’s help. He has been my Rock! I’m reminded of the verse in 2 Corinthians 12— But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” I was weak many times this past year, but the Lord made me strong (2 Cor. 12:10).

Happy new year, friends. May we hold fast to the Lord and trust Him in everything these next 12 months—He is faithful!!

Saw this quote recently and wanted to share. Perfect as we begin 2016!

Another diagnosis (and hopefully my last..)

Wed, 09 Dec 2015 04:56:00 GMT

Hello friends,

For those who didn’t hear, my grandma passed away the day after Thanksgiving. We had a beautiful service for her this past Saturday. We all miss her so much. :'( It sure is different not to have any more grandparents living.

On November 20th, my GI dr. called, and I got diagnosed with Wilson’s Disease, also known as hepatolenticular degeneration. He thought WD very unlikely, but you know me, I’m a puzzle. Wilson’s disease is a rare, genetic copper overload disorder where the body lacks or has an abnormal copper transport protein due to two mutations. This causes copper to build up in high amounts in the brain, eyes, liver, kidneys, and other organs. The excessive copper causes damage (hepatic and neurological) and even failure of these organs if not diagnosed early enough.

I don’t know why I’m the one to end up with all these mutations and rare diseases (especially since, as far as we know, there’s no past family history of these genetic disorders), but I won’t stop trusting the Lord. I am in His hands, and I know that the Lord will turn even this into good.

Gratitude…a precious offering.

Wed, 25 Nov 2015 04:24:00 GMT

Hi everyone,

I did receive my liver biopsy copper results back from the Mayo clinic last Friday. My GI dr. called me, and it’s not good news. But I’ll share about that another time.

Have a blessed Thanksgiving, friends. Hold your loved ones close as things can change in the blink of an eye.

Love,
Kerissa

Pathology results

Fri, 13 Nov 2015 03:53:00 GMT

Hey friends,

Liver biopsy

Tue, 03 Nov 2015 04:02:00 GMT

Hey guys,

Just wanted to let you know that my liver biopsy is scheduled! My GI dr. put the order in as “urgent,” so it’s for this Friday the 6th.

I will let you know what the biopsy results show! I also see my mitochondrial neurologist at Randall Children’s next Tuesday and will be sure to update on that as well.

Upcoming

Sat, 24 Oct 2015 03:23:00 GMT

Hey friends,

Rheumatology— The new rheumatologist I saw at OHSU is very nice! She’s not 100% sure that I have the periodic fever syndrome “Familial Mediterranean Fever” because I only have one mutation versus two (FMF is recessive). But, 30% of patients with FMF only have one identifiable mutation anyways. Soo, regardless of the genetic results, she’s starting me on the standard FMF treatment to see if we can get these fevers to go away, and I’m to monitor my symptoms while on the medication. It’s a very small dose, but I started experiencing lots of achy muscle pain in my back, so I have to email my dr. about it.. :/

Sleep Medicine— Using BiPAP is going very well! I now have less than 5 apnea episodes per hour (it used to be an average of 17 episodes per hour), and anything less than 5 is good! I have been experiencing really bad nasal congestion at night, so my sleep dr. recommended I turn up the humidification settings on my machine.

Thoughts on waiting.

Thu, 15 Oct 2015 02:56:00 GMT

Hey friends,

I received my repeat 24 hr. copper test results, and sadly, the level increased from 77 to 106 in just a month (normal range is 3-50). We have lots to discuss with my GI dr.. I see him this coming Monday. I also have a follow-up with my sleep medicine specialist next week.

I will update after those appointments!

Dealing with infection.

Sat, 03 Oct 2015 03:13:00 GMT

I had a total of 5 appointments this week. Saw Cardiology, and my dr. is pleased to hear that the additional sodium to my TPN helps reduce the dizziness and high rates. Still haven’t had a chance yet to dissolve sodium chloride tablets and flush them through my tube, but hopefully next week! I see him again in 6 months.

The Periodic Fever Syndrome mutation I have is related to a rare auto-inflammatory disorder called Familiar Mediterranean Fever. And the funny thing is, I’m not Mediterranean. lol Basically, the gene MEFV is defective and can’t regulate inflammation. My rheumatologist spoke with his colleague to see if she can get me in sooner than January. She said she’ll look at her schedule and try to get me in asap.

Continuing to rely on the Lord for His help because there’s nothing else I CAN do. He is my rock and fortress!

Unexpected

Sat, 19 Sep 2015 04:25:00 GMT

Hello friends,

Both Hematology and Rheumatology thought it was unlikely that I have a Periodic Fever Syndrome to add to my long list of conditions, but you know me….I’m rare. Mitochondrial disease is rare. Ehlers-Danlos Syndrome is rare. Complex Regional Pain Syndrome is rare. Dysautonomia is rare. And before all this, I never heard of any of these disorders!

On top of all this, we found out that my repeat 24 hr. copper results are still elevated. This week, my GI dr. spoke with another copper expert at Yale. He suggested we do a third 24 hr. copper test (hopefully my last!) the beginning of October.. If the results have dropped, then Wilson’s Disease is more unlikely.. If they’re still high, I guess we go from there.. I just want to rule it out once and for all! And if I do have Wilson’s, I’d like to begin treatment quickly before my brain/liver gets damaged..

Repeat copper test.

Fri, 04 Sep 2015 03:03:00 GMT

I’ve been on TPN (IV nutrition) for more than 8 months now..

I wanted to share a few pictures I found on ThriveRX’s facebook page (a company that makes TPN). I thought it was cool how TPN is put together!

More tests to be done

Tue, 11 Aug 2015 03:59:00 GMT

Today, I saw my GI specialist. It wasn’t very good news.

I mentioned in my previous post that some of my lab work has been steadily dropping even with 6x the normal amount of IV copper in my TPN. This past Friday, my GI dr. personally called me to talk about what may be going on. He told me that he’s going to get in touch with some doctors who specialize in copper metabolism diseases (a dr. in San Francisco and one on the East coast).

So this morning, he was able to connect with the dr. in SF. This expert suggested looking into a rare metabolic disorder called aceruloplasminemia. My GI doc researched it but doesn’t think I have it. So now he’s going to call the East coast dr. to get his opinion.

In the meantime, he’s ordering a 24 hr. copper test (he wants to avoid a liver biopsy as much as possible) to further look into a genetic disease that causes copper build-up in the brain, liver, and other organs. Even if the results are “normal,” that’s a bad thing because that means copper is building up in my organs and not being removed by the body. So, basically, the results will not be good regardless if they’re “normal” or “abnormal.” We don’t want either but it’s going to be one or the other.. :/

It’s hard to believe that my doctors are looking into yet another rare genetic disease to add to my long list, but these lyrics from one of my favorite songs by Michael W. Smith keep coming to mind:

Long overdue appointment updates.

Wed, 29 Jul 2015 02:17:00 GMT

Hello friends,

Anyways, here are some updates on my July appointments:

Cardiology- My cardiologist wants more salt added to my TPN for my low blood pressure and tachycardia. 11 or more grams to be exact! That’s a ton of salt but it’s needed for these heart issues. He spoke with my GI specialist. Unfortunately, adding that much salt would require a big increase in my IV fluids to balance everything out, but I can’t tolerate more than a liter at a time because of my neurogenic bladder. Soo, my GI specialist is conferring again with my cardiologist to see if I can instead crush salt tablets and flush them through my jejunostomy feeding tube.

Sleep Medicine- July 2nd I had my 4th sleep study. They put BiPAP on me. Everything went well until 5 AM that morning when I woke up with horrible stomach pain and distention! Apparently, I started experiencing something called aerophagia, probably due to a weak esophagus. BiPAP air went down my esophagus and into my stomach because the valve covering the esophagus didn’t close fully. We are still going to try BiPAP again at home, starting this coming Monday. Please pray I can tolerate it (there aren’t really any other options for my sleep apnea). My sleep dr. also ordered my 2nd pulmonary function test which was completed yesterday.

Hematology- Today I saw my hematologist. If that copper genetic disease comes back negative, he thinks my low copper issues are related to my Mitochondrial DNA Depletion Syndrome. Copper is vital for proper function of Complex IV in the mitochondrial electron transport chain. He also ordered more labs to check my red blood cells and make sure I don’t have the blood disease that came up on my Whole Exome Sequencing results.

long update and whole exome results

Wed, 08 Jul 2015 00:13:00 GMT

Today, I had a follow-up with my mitochondrial disease specialist in San Diego to review the whole exome sequencing results! They found about 100,000 variants in me, but they only can report the mutations that they think may relate to my symptoms.. Unfortunately, we still don’t know what gene mutation(s) is causing my Mitochondrial DNA […]

More test results

Wed, 24 Jun 2015 02:32:00 GMT

Hey guys,

Last week, I received my sleep study and EEG results!

Compared to my sleep study in 2013, things have worsened sleep apnea-wise. The results show that I stop breathing an average of 17 times per hour. No wonder I’m so tired. lol The longest length of time that I didn’t breathe well was 50.6 seconds. The sleep data also shows that my heart rate shoots up to 147 beats per minute multiple times throughout the night. We’re not sure what causes that—I do see Cardiology next Wednesday.

My sleep dr. wants me to go back to the sleep lab. He put in an order for CPAP settings to be calibrated and titrated to see if I can tolerate it better. If not, he mentioned again that we may need to switch to BiPAP. This 4th sleep study is scheduled for next Thursday, July 2nd.

My EEG results show something called brain wave “slowing.” This is abnormal and can be caused by numerous things. I hope to ask my mito specialist what this means in relation to the mitochondrial disease. My neurologist said this may be partly why I experience cognitive issues.

I’ll be admitted again sometime in the future to get an overnight EEG completed.

Unexpected

Fri, 12 Jun 2015 03:29:00 GMT

Oh what a crazy past two weeks it’s been.

Anyways, back to the story….we had all our plans made—lodging, airfare, and the scheduled June 23rd appointment with my mito specialist. The clinic coordinator told us the appt. would need to be postponed. Talk about stressful! She also explained to us that my mito dr. is booked out until October. Disappointed and sad by this news, we knew it would take a miracle for me to get in sooner than October. But like ALWAYS, God is faithful and in control! He is good.

True, we have to change our flights and lodging, but it could have been a lot worse! So I’m thankful. I do hope nothing like this happens again!

This past Monday, I had my 3rd sleep study to check up on my breathing and sleep apnea. And all day Tuesday, I had my 1st multiple sleep latency test (this one was torture because of what it involves) to rule out narcolepsy and other hypersomnias.

Wednesday, my home health nurse came to draw labs from my central line and change my line dressing site (she comes every single week).

And today, I went through my 1st EEG to rule out seizures and pin-point where the myoclonus is coming from. I had electrodes placed on my head 3 times this week alone. Not pleasant! :/ Hope to get sleep study and EEG results by next week.

Neurology and GI visits

Fri, 29 May 2015 02:52:00 GMT

Hey guys!

I mentioned that I’ve been dealing with worsening myoclonus (muscle jerking)—it can be brainstem related, spinal-cord related, or from the muscles. It could also be from seizures. So she went ahead and ordered a standard 30 minute EEG which is scheduled for June 11th. If it’s normal (it often is because it’s such a short study), she’ll look in to admitting me for a longer EEG at the hospital.

She’s also going to write up an ER protocol letter for whenever I have a “mito crash.” She’ll explain what type of IV fluids I should receive, what meds to stay away from, etc. I’m sure the letter will be really helpful for the ER doctors!

In other news, we leave for San Diego in 23 days!!

Update 5/20/2015

Thu, 21 May 2015 02:46:00 GMT

Hi friends,

P. S. In exactly one month, my parents and I leave for San Diego for the third time to see my mitochondrial disease specialist!

Waiting

Thu, 07 May 2015 03:26:00 GMT

Hi guys,

Just wanted to check in and let you know that I’m hanging in there! Haven’t posted an update in a while because I’m waiting to hear from my hematology doctor again….he called last week and wanted me to keep a record of my fevers every 2 hours so that he can look at the pattern and decide on further work-up. He plans to touch bases with me on Friday.. Not going to go into details yet, but something new is going on as well and it doesn’t seem very good.

Last week, I finished my 5th IV iron infusion….now we watch and see how my blood counts do. I’ll also be getting my copper level checked again in a couple of weeks to see if I’m still deficient.

Still not tolerating tube feeds or solid food, so I continue to remain on IV nutrition. I will be trying a “blended real food” tube feeds formula soon to see if I can tolerate that. The elemental formula I’m currently on is even more broken down than the blended food formula, so we’re not sure how this will go..

Hematology and sleep medicine visits

Thu, 23 Apr 2015 02:14:00 GMT

At this point, we don’t yet know why I’m dealing with daily fevers, night sweats, and other symptoms. My hematologist is looking into rare blood disorders and researching more. He ordered lots of common and uncommon lab work. By tomorrow, I will have had 8 tubes worth of blood drawn!

This afternoon, I saw my sleep medicine dr. for a follow-up. I’m still dealing with fast breathing and shortness of breath. I’m also very sleepy and not able to tolerate my CPAP. So he’s ordering another sleep study and something called a multiple sleep latency test. He wants new data to see if I need BiPAP (bi-level positive airway pressure) now. Unfortunately, they’re completely booked, so I’m not able to get the studies done until June. :/

Referral to Hematology.

Tue, 14 Apr 2015 03:32:00 GMT

Hi everyone,

I had another follow-up with my GI specialist this afternoon. Unfortunately, I still haven’t noticed any extra energy with the IV iron infusions, so he is ordering a bunch of different labs to see if I’m deficient on certain minerals while on TPN. He’s also ordering a carnitine panel.

I tried tube feeds last week at 10 mls per hour, but after receiving just 16 mls, I felt sick to my stomach and got super distended. So I have to decrease to a rate of 5 mls—-that’s one teaspoon per hour..! That’s not enough to live on, so I still have to receive TPN and lipids.

GI update

Thu, 02 Apr 2015 02:57:00 GMT

Hello everyone!

Haven’t felt up to blogging in a while because the iron deficiency anemia makes me ever so tired, short of breath, dizzy, and pale.

Still receiving TPN every day for 16 hours, but my GI is having the TPN volume/calories decreased by 20%. We are going to introduce j-tube feeds again at a very slow rate of 2 teaspoons per hour. And we’ll be using the elemental (broken-down) tube feeds formula. Not sure yet how this will go as I still deal with hypoactive abdominal sounds, etc. But I’m game to try! I see my GI specialist again to follow up on this in 1 1/2 weeks.

This morning, I had my cardiac MRI. It’s different—they have to capture the images according to each heart beat, and you wear EKG leads and a respiration belt. During the scan, I was told to take a deep breath, blow it out, and hold for 10-15 seconds….this cycle repeated over and over again!

Tomorrow I have an orthopaedics follow-up, and Friday is my first IV iron infusion at the hospital. After that, I’m done for the week!

Cardiac findings and ENT update

Thu, 19 Mar 2015 03:31:00 GMT

Hey friends,

Thank you for checking in and for your continued prayers! So much keeps happening, and this journey just gets more and more complicated.. :/

But this I remember: the Lord fights my every battle, so I will not fear. He goes before me and never forsakes me!

Some of my blood counts have been steadily dropping since December, and I’m now anemic. That and low grade fevers every day hasn’t been fun. My primary care physician ordered a bunch of labs, and we found out that I’m very deficient on ferritin (even while on TPN). I should hear soon what the plan is for that. And, I see my GI dr. next Thursday for a much needed follow-up. If the ferritin deficiency is not what’s causing the anemia, then my PCP will be referring me to Hematology.

Last month, my cardiac electrophysiologist referred me to General Cardiology to discuss my recent heart echo results. That appointment was this past Monday. The dr. went over the echo images and explained that the wall of my descending aorta (in the abdominal area) is very irregular and “jagged” which is not normal. It’s supposed to be smooth. She’s not sure what to make of this and whether it will cause problems, so she ordered a cardiac MRI to investigate this further. This will be my 17th MRI scan…

I had these two tests done last year, and my ENT dr. compared them. Things have worsened since then. Unfortunately, we won’t know what will happen a year from now..

Every time my doctors discover more and more that’s wrong inside my body, the only thing I can do is rest in the Lord. He has a good purpose in every single thing that happens!

“You go before me every step I take…”

Tue, 10 Mar 2015 03:03:00 GMT

This past Thursday, I had a neuro-urology follow-up. I tried two different medications for my neurogenic bladder, but both caused awful side effects. So at this appointment, my doctor discussed what needs to be done. It looks like I may have to have surgery #9 this year in order to protect my kidneys/bladder. She recommends this be done sooner rather than later. It involves neuro-modulation (the spinal cord stimulator that I had implanted for CRPS pain back in 2011 was a neuro-modulation device). So this surgery is very similar—it corrects the abnormal signals in my brain and helps the sacral nerves in my spinal cord. We won’t be making the final decision, though, until after I see my mito specialist in June.

My neurology appointment today went well. I updated her on all that’s been going on. I’ve been dealing with an increase in shock-like muscle jerks, and she explained that they could be caused by many things, one of them being seizures.. If the movements worsen, she’ll have me get an EEG (electroencephalogram) to try and pin-point where these are coming from.

Regarding the low-grade fevers I experience that come and go, I’m to monitor them. If they reach beyond 100.1 degrees, I have to let my PCP know to get this investigated further. My neurologist said fevers can be caused by numerous conditions, and she believes they’re not from dysautonomia.

Yesterday, my pastor shared this passage from 2 Corinthians. It’s a familiar section of Scripture to many, but hearing it again was so encouraging. This has been on my heart:

“So [I] do not lose heart. Though [my] outer self is wasting away, [my] inner self is being renewed day by day. For this light momentary affliction is preparing for [me] an eternal weight of glory beyond all comparison, as [I] look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” ~2 Corinthians 4:16-18

Another ER visit and more appointment updates.

Fri, 27 Feb 2015 04:11:00 GMT

Hi friends,

We got home after 6 in the morning on Tuesday, so I’ve been so exhausted! I did have two appointments yesterday with my surgeon and a new ENT dr. I had a lot of granulation tissue growing at my j-tube site, so my surgeon used more silver nitrate sticks to burn it off. The ENT visit went well. I had a laryngoscopy done—one of the doctors inserted a scope down my nose to look closely at my swallowing muscles and voice box. My ENT dr. noticed that all the muscles in that area have atrophied a lot, so he thinks this may be what’s causing my chronic cough/swallowing issues. He ordered another modified barium swallow study with x-ray to be done in 3 weeks.

Never a dull moment.

Sat, 14 Feb 2015 04:24:00 GMT

Hi friends,

It’s been crazy hectic, and my arm where the clot is still doesn’t feel well yet. But I continue to trust the Lord and persevere! He is good.

Thank you all for your love and prayers!

More Results.

Fri, 30 Jan 2015 04:13:00 GMT

Hey everyone,

As I mentioned in my previous post , my mito specialist wanted to check for mitochondrial DNA depletion…..well, those results are back.

And guess what—the results do show that I have a mtDNA depletion!

It’s not very good news because this means something is depleting the number of mitochondria in my body, and all organs/cells need a normal amount of mitochondria to function well. I wasn’t expecting these results at all, but I am still so thankful to the Lord for more answers to all my numerous conditions/symptoms. This depletion may be why my GI tract in particular is in such bad shape and why I can’t tolerate j-tube feeds and solid food.

Since this genetic test came back abnormal, my mito specialist is currently going to hold off on the fibroblast super complex assembly testing and electron transport assays analysis. He wants to see if the whole exome sequencing will pinpoint which gene mutation is causing the mtDNA depletion.

Speaking of whole exome sequencing, it looks like the test will be started next week! A national phlebotomy service is coming to our house this coming Monday to draw my blood (my mom’s as well) to send off to the lab.

On Tuesday, I have a follow-up with my neuro-ophthalmologist to once again check my optic nerves and make sure the external ophthalmoplegia in my left eye is stable.

Wednesday, I have another appointment with the pain team at OHSU, and Thursday, the home health nurse will be coming again to change my PICC line dressing.

The following week, I have my 4 scheduled MRIs (brain, cervical spine, thoracic spine, and right foot)….I have to spend over 4 hours in the MRI tube. :/

I also have follow-ups with my GI specialist and Cardiology, so it will be a busy next couple of weeks.

Anyways, I just wanted to check in and and share these results with all of you!

Kerissa

Mito appointment update 1/20/2015

Wed, 21 Jan 2015 02:25:00 GMT

Hi, everyone! Well, the appointment with my mito specialist is finished. Lots of things to process now, but here’s the rundown: 1. My dr. agrees and notices that I’m getting worse medically.. It’s only been 6 months since I last saw him, and he already sees a difference. 2. As I mentioned in the past, […]

Adjusting to TPN

Fri, 16 Jan 2015 03:57:00 GMT

Hey everyone!

Oral eating is recreational now rather than a necessity, so my small intestine has been getting better rest than before. But, I still have hypoactive abdominal sounds which is not very good. Also, as I mentioned in the past, we always have to be on the watch for infection since my PICC line goes towards my heart.

Haven’t noticed any extra energy still, and I’ve been sleeping even more—TPN can destroy red blood cells, and some of my blood counts have been lower than normal which could explain the worsening fatigue, so my GI is watching that.

This past Tuesday, I had physical therapy, and yesterday was a follow-up with my PCP. She is referring me to ENT for my lingering cough/swallowing issues. Today, I saw an orthopaedic foot dr. regarding the lymphangioma (vascular tumor) that was in my right foot back in 2010. He ordered an ankle/foot MRI with and without contrast to check for/exclude recurring tumor. This will be done after my parents and I get back from San Diego.

Thank you all for your faithful prayers!

Kerissa

A New Year.

Sun, 04 Jan 2015 02:58:00 GMT

Once I got home, 3 different TPN nurses from home health came by Tuesday, Wednesday, and Friday to teach me and my mom how to administer and hook up to TPN. They also drew blood work (which my GI specialist wants completed weekly) to monitor all my electrolytes, triglycerides, etc. I also got my PICC line dressing changed twice—a nurse will be coming once a week to do this as well.

TPN initiation has been a big step. I see my GI specialist this Monday to go over everything and discuss continued tube feeds trials as it’s not good to stay on TPN long-term. And for the first time ever, the hospitalist gave me and my family a serious talk about disease progression, prognosis, and how I need to get my PCP more involved because of all these changes. It was different hearing that for the first time..

Getting admitted this week.

Wed, 24 Dec 2014 02:29:00 GMT

Hey everyone,

I just wanted to let you know that I will be getting admitted the day after Christmas. I’m very thankful for my GI dr.—he’s working at the hospital and not in clinic all this week, but he arranged and coordinated everything so quickly! I’m not doing very well. The pro-motility drug I’ve been taking hasn’t helped at all, and it’s getting harder to tolerate oral intake. All my back muscles have been getting weaker and forming tight, painful knots to compensate—my physical therapist said it’s because my muscles aren’t receiving enough nutrition. I’ve had to sleep past 2 pm every day now because I’ve been so tired. All this and more is going on, and yet, I look so normal on the outside!

On top of all that, I still cough and gag all day and night. We wonder if my secretions are going down the wrong way and ending up in my lungs. I got the overnight oxygen testing completed last week, but we won’t get results at the moment because my sleep dr. is out of town these last two weeks of December.

We’re not sure how long I’ll be admitted. But I’ll keep you posted! Everything is up in the air regarding how long I’ll be on TPN (IV nutrition), etc.

I hope all of you have a blessed Christmas! I’m so thankful for you and your steadfast prayers.

P.S. I thought this was so neat! Last week, CNN wrote an article , and here is part of what they said: “ We know parents whose children are in remission from cancer and others whose children have mitochondrial disease . Their dream present would be an end to childhood disease. Give to their causes if your family is lucky enough to be untouched by serious illness.”

More tests and referrals.

Tue, 16 Dec 2014 04:15:00 GMT

Hi everyone,

We thought this week would have been my scheduled admission to the hospital since I haven’t tolerated glutamine, but we’re trying one last thing to re-mobilize my small intestine. My GI specialist really wants to avoid TPN (he recently told us he has two critical patients in the hospital because of sepsis from being on IV nutrition).

Today I saw my physical medicine specialist because I’ve been dealing with something called “foot drop” (can be seen with many neurological disorders). It makes me trip when I walk around in our house. He ordered an ankle-foot brace which is similar to the kinesio tape that my physical therapist used on me in the past. It helped a lot, and I look forward to using the AFO brace!

My dr. also referred me to his colleague who is a foot and ankle surgeon. Not planning to have foot surgery, but I’m not sure if the lymphangioma in the bottom of my foot (I had it surgically removed in 2010) grew back because the “bump” looks bigger to me and hurts a lot. Dr. C isn’t sure what type of MRI would be good to order for this specific problem, so he is referring me. Lots of appointments in the future! :/

Worsening problems.

Thu, 04 Dec 2014 03:52:00 GMT

Hey friends,

I’m to try an amino acid called glutamine for 4 days to see if it will help the mitochondria in my GI tract. And we’re also trying another tube feeds formula since the elemental one wasn’t tolerated well last week.

If these last things don’t help, then we’re moving on to TPN. I’ll have to get a central line placed and be admitted for the start of it for monitoring, daily lab work, and hourly blood sugar checks.

I’m so thankful for my GI specialist! He’s even trying to get in touch with my mito specialist in San Diego.

Next week, I will be getting my j-tube changed yet again to a different-sized mic-key button. And I also have a follow-up with cardiology to go over the holter monitor results.

Good news and bad news.

Fri, 21 Nov 2014 04:46:00 GMT

Hey friends,

We got the CT scan results yesterday! The images showed that I had something called Buried Bumper Syndrome (a rare complication with feeding tubes)….basically, the balloon on the j-tube (which is inflated with 1 ml of water to hold it in place) got stuck in my abdominal muscle.. :-O No wonder I am dealing with pain and spasms! So my GI surgeon’s office got me in that afternoon. I’ve been having appointments every day….I’m tired to say the least. My surgeon pulled the tube out and replaced it with a temporary balloon-less tube to let the area heal. And she’ll later switch it to a different size in 3 weeks. We’re still not sure if this will resolve all issues as my GI specialist said there may be more than one thing going on, including the motility issue. But at least we can take care of this specific problem now.

Because I’m losing weight again, my GI dr. is going ahead and starting me on an elemental tube feeds formula which is more broken down and usually easier for patients with dysmotility to tolerate. I see him again in 12 days!

Today I had urodynamic testing (super thankful that’s out of the way!), and the results aren’t good.. My nervous system is not working well at all, and she thinks this is from a cerebellum issue and/or a spinal cord problem (which my mitochondrial specialist suspects as well when I saw him back in June). My specific bladder issue is hard to treat, but she is starting me on a medication….sometimes it works and sometimes it doesn’t. If it doesn’t help, she’ll re-evaluate and go up the ladder from least invasive to invasive.

Have a blessed Thanksgiving next week!

Love,
Kerissa

More tests.

Tue, 18 Nov 2014 03:40:00 GMT

Hi friends,

Some of you on facebook know how I had to go to the ER yet again last week for a lot of issues….I was also admitted overnight in the ED observation unit for IV hydration and pain control.

Thank you for checking in!

Love,
Kerissa

Rough.

Thu, 06 Nov 2014 02:50:00 GMT

Oh what a week it’s been.. Thankful for my Lord and Savior who is always there for me in these challenging days.

A couple weeks ago, I started dealing with bad spasms in my small intestine and not being able to tolerate j-tube feeds—this is still going on today. The spasms cause my mic-key button to pop out partly over and over again. I haven’t been able to eat solid food without a lot of pain, so I’m currently on a soft food diet. Last week, I also started experiencing dizziness every single day and night…it was horrible and I just felt unwell. Whenever I had doctor appointments, my blood pressure was checked each time and the numbers kept getting lower (my lowest recording was 80/62 and I’m usually 113/80ish). No wonder I didn’t feel well!

Nothing was resolving, and last week, both my GI surgeon and GI specialist were out of town. My GI surgeon’s resident squeezed me in—he thought maybe the “balloon” on the j-tube had too much water in it, but there was only 1 ml in it. So he wasn’t sure what was going on.

Yesterday, I said goodbye to my pain dr. who is leaving OHSU to soon start working at UWMC in December. I wasn’t expecting to cry because I did enough of that when he broke the news back in September. Plus, this isn’t goodbye forever because I’ll be seeing him up there eventually. But he got teary! So me and my mom did, too. :'( He kissed me on the cheek and hugged me tight. We’ve been best buddies. :'(

Thank you for reading and praying,

kerissa

Muscle biopsy update and other news..

Fri, 24 Oct 2014 04:31:00 GMT

Hello everyone!

Last Wednesday, my GI surgeon had to get me in because I’ve been having raw tissue growth near my j-tube. She had to use silver nitrate to chemically burn off the granulation tissue! Hopefully that did the trick, but she said it may need additional treatments.

So she’s very glad I see cardiology tomorrow! And I am, too, because my high heart rates have been getting worse.. :/

More Setbacks.

Fri, 10 Oct 2014 02:51:00 GMT

If my insurance approves it, my pain dr. will be starting me on another pain medication.

Long overdue update

Fri, 26 Sep 2014 01:54:00 GMT

Hello friends,

I’m sorry it’s taken me so long to post. My weeks have been filled with doctors appointments and therapy, and I’ve been needing to sleep past 2 pm some days!

Warning: this will be a long medical update!

I haven’t been tolerating j-tube feeds very well, and the gastroparesis has been causing a lot of stomach pain (all organs need energy to function….because of mito, my stomach isn’t getting enough energy, so the food I eat just sits in my stomach or moves very slowly). I saw my GI dr. on Monday, and he set up a new plan. He’s such a wonderful doctor! He put in a new tube feeds order to see if a less calorically-dense formula will be better tolerated. He also mentioned I could be dealing with Small Intestinal Bacterial Overgrowth (SIBO), but we will try this first. Regarding the abdominal distention from the gastroparesis, he wants me to do a trial of increased j-tube feeds and less eating orally (by mouth). That’s a big step, but hopefully it will only be short term! I won’t be starting this yet until I get the new formula and until I can switch feeding pumps. My current pump is quite heavy and makes it difficult to carry (because of the muscle weakness) so his staff is contacting other companies for a lighter one.

Unfortunately, my neurogenic bladder has been getting worse, and my GI surgeon explained how my kidneys could die if I don’t get this treated. Wasn’t expecting her to say that! She put in an urgent referral for me to see a neuro-urologist at OHSU. That appointment’s still a month away because she only works part-time and this specific dr. is the one I need to see.

Sad news

Fri, 05 Sep 2014 02:28:00 GMT

Hi everyone,

To my great sadness, Dr. S told me that he is leaving OHSU the end of October and moving to Washington to practice at the University of Washington Medical Center beginning in December. I wasn’t expecting this at all. :'( I’m so very sad!! It’s not because he doesn’t like OHSU anymore…he’s been here for 18 years. And he likes change, so he made the decision a month ago.

The next several weeks, I have many big follow-ups with Neurology, Surgery, GI, and Internal Medicine. So I may not be able to update much.

Another trip to the ER….this time by ambulance :(

Fri, 22 Aug 2014 01:23:00 GMT

Hey friends,

I’m home now because I started perking up after all that they gave me, but I am still so sleepy and weak.

My GI dr. and the nutritionists recommend that I start using tube feeds 24 hours around the clock, so please pray that things will start looking up and that I’ll feel better. I may have mito, but it won’t have me!

Another trip to the ER…..

Thu, 14 Aug 2014 02:19:00 GMT

But first, let me rewind a little bit:

On Thursday, Aug. 7th, I had surgery for a jejunostomy feeding tube placement. Thankfully, everything went well, but there were still some complications and setbacks.

1. After surgery, my heart rate was way “too high,” as the nurses put it.

2. I had a low grade fever, something the team monitored closely in case it turned into Malignant Hyperthermia (which I’m susceptible to based on genetic testing).

3. I had to spend several long hours in the PACU (post-anesthesia care unit) because of breathing problems which continually set the alarm off. The team ended up having to use my CPAP machine.

4. I had almost a whole LITER of fluid in my bladder! The doctor was astounded! I couldn’t empty it on my own (because I have a neurogenic bladder), so they ended up having to place a Foley catheter—such a painful procedure! x[

5. During surgery, they wanted to place an arterial line in my arm to continually monitor blood gases….my blood work got so out of whack.

6. Over the course of this hospital stay, I had to be given 6 liters of IV fluids because my potassium kept dropping very low!

7. The dr. said I bled a lot during the surgery, even though this was laparoscopic (minimally-invasive).

Anyways, I got home from the hospital Saturday evening! I was sent home with a long list of medications to take, including some stronger pain meds because having CRPS makes my nervous system more sensitive than normal.

Today I started feeds at a very slow rate. Here are a couple pics:

Thankful.

Sat, 02 Aug 2014 00:47:00 GMT

On Wednesday, I had a bilateral lumbar sympathetic nerve block, and the best news of all—it was a successful block. =) I’m so so thankful to the Lord for this pain relief! Within minutes, my pain went from 8 to 0 on a pain scale of one to ten! My legs and feet still feel amazing. Nerve blocks are temporary, but my pain dr. used a combination of meds to try and make the pain relief last as long as possible!

I finally figured out why I’ve been dealing with bad insomnia at night. The mito specialist started me on a high-dose antioxidant which I’m supposed to take twice a day. And one of the side effects is insomnia! So because of that, my sleep dr. is starting me on a “non-habit forming” sleep med. I hope it helps—not getting enough sleep has been aggravating all my GI symptoms.

I’ve been losing more muscle in my legs, too. It’s hard to see them getting smaller and smaller….my balance is more affected as well, so my physical therapist is having me start using Neuromuscular Electrical Stimulation (NMES) to try and slow the muscle atrophy. I’m so blessed to have such dedicated therapists work with me every week.

Thank you so much for your faithful prayers and support as I start another part of this journey!

Surgery date :)

Tue, 22 Jul 2014 02:15:00 GMT

Last week, I had 5 appointments—all at OHSU.. I feel like I live there! lol But do you want to hear some good news? Surgery had a cancellation, so I was able to see them this past Wednesday instead of the previously scheduled consult appt. the beginning of August! All the praise goes to God! My 6th surgery (jejunostomy feeding tube placement) is now scheduled for Aug. 7th (pre-op is Aug. 5th), just two and a half weeks away! If all goes well, it will only be a one night stay in the hospital.

I’m glad this surgery is coming soon. I’m still losing weight again, and on top of all my other GI diagnoses, the general surgeons gave me another diagnosis called Failure to Thrive (FTT). It’s odd to know I now have that..

The CRPS pain in both of my feet and the muscle biopsy site has been so horrendous. I haven’t been sleeping well at all, and I often have to keep my feet over the side of my bed because sheets cause pain! I saw my pain doctor on Thursday, and I’m just so grateful for all that he does to try and lessen CRPS flare-ups. He wants to do another bilateral lumbar sympathetic nerve block which is scheduled for next Wednesday the 30th. We discussed the J-tube surgery, too, and his recommendations for pain control during and after the surgery.

Next week, I also have a follow-up with my neuro-ophthalmologist, and my orthopaedic spine dr. wants to see me as well to check up on everything with scoliosis x-rays.

4 years ago today!

Wed, 09 Jul 2014 03:11:00 GMT

A lot of scar tissue is building up under the muscle biopsy incision (that’s the nature of EDS), so my physical therapist has been working on trying to break it all up. It’s so painful. I have a feeling CRPS is flaring up in that area, but we’ll see what my pain doc says next week.

Tomorrow, I see my neurologist to update her on all that’s happened. And the next few weeks, I have a lot of follow-ups with Physical Medicine, Neuro-ophthalmology, and Spine! That’s on top of all the therapy appointments. It’s been a busy summer already!

Back home :)

Tue, 01 Jul 2014 03:27:00 GMT

It’s so great to be home! We got back from California this past Friday.

Dr. P also removed the muscle biopsy sutures in my leg. The surgical area still hurts a lot—I’m glad I see my physical therapist this Wednesday. I won’t get biopsy results for at least 2 months (and probably longer since I don’t see the mito specialist again until November). On June 20th, the dr. removed 4 chunks of muscle and sent them to different labs across the country. It was really painful having to be completely awake for the surgery. Hopefully I’ll never need another one!

Long appointment update 6/17

Wed, 18 Jun 2014 01:54:00 GMT

Hey friends,

Anyways, my case is very complicated and difficult. Dr. H is concerned that I may not only have a possible mitochondrial cytopathy but also other conditions on top of this, including a spinal cord problem. Based on my neurologic exam, he also wonders if I had a small stroke on the left side in 2012 (when all this really started) because my reflexes are more pronounced on the left side which often indicates a stroke.

So here’s the long plan:

2. This Friday, I have a skin biopsy (to check fibroblast cells) and open muscle biopsy scheduled (and I have to be awake during it!) which will be sent off to a lab in Georgia. They will be doing mtDNA testing. In addition, he ordered electron transport assays and histochemistry.

3. He also mentioned possible whole exome sequencing which looks at 30,000 genes, but he doesn’t want to do that yet because it’s very complex.

4. At Cincinnati Children’s last year, I had blood mtDNA sequencing done which found a rare mutation (13376T>C in ND5). He wants my mom to have that done as well to see if she carries this particular mutation. If she does carry it, then that is not causing my symptoms since she’s asymptomatic.

These results take up to two months! And he wants to see me in 3 months…sooner than I was expecting! He warned that some of these results (muscle biopsy especially) can often be normal. That doesn’t mean nothing’s wrong….mitochondrial disease is an ever-growing field. If that’s the case, he said I may have a disease never before seen.. I hope not!

I’d appreciate prayer that I will be able to tolerate the biopsies on Friday. I have complex regional pain syndrome, and that makes me hypersensitive to any type of invasive procedure..

Love you all!

3 days.

Thu, 12 Jun 2014 02:50:00 GMT

Just in case you don’t already know, we leave for San Diego in 3 days! 😀 My appointment with the mito specialist is in 6 days….muscle biopsy in 9 days! Can’t believe everything is just around the corner! It can’t come soon enough, and here’s why: Long story short, I had yet another ER visit […]

Only 19 more days to go!

Tue, 27 May 2014 03:05:00 GMT

Can you believe we leave for San Diego in less than 3 weeks!?! Wow! 🙂 I’m sorry it’s been so long since I updated. Haven’t been feeling great and am dealing with really bad hay fever on top of everything else (and the funny thing is, I’m rarely outside!). May 16th I had a nasojejunal […]

New and current problems

Fri, 09 May 2014 03:14:00 GMT

I’m sorry my blog posts have lately been few and far between….I’ve been busy trying to manage all these ongoing symptoms which are getting significantly worse. To the stranger’s eye, I look completely normal. And yet, this is just a small part of what’s going on:

My left eye is getting more and more paralyzed. It hasn’t been fun losing so much range of motion, and it’s weird that I can’t look to the left unless I move my whole head. But I’m so thankful that my right eye is unaffected at the moment and can move very easily!

I’m now dealing with ongoing hip pain, and physical therapy thinks this is a hip impingement. The problems never end.. :/ This is probably because of EDS and all the muscle weakness that I’m experiencing as well.

The nerve pain in my feet has been increasing in severity—my pain medicine dr. is concerned that I may have a nerve injury component worsened by not getting enough nutrition.

Next Friday is the day my GI dr. will be placing an NJ feeding tube through my nose, past my stomach, and all the way into the middle of the small intestine. I’m glad this is just around the corner because I’m still steadily losing more weight. I’m nearing the weight that I was at when just 10 years old….that’s how bad this is becoming!

Getting a feeding tube

Fri, 25 Apr 2014 02:43:00 GMT

Hey friends,

Just a short update! I had appointments with GI and Nutrition this past Tuesday, and it’s not great news—my weight’s still steadily dropping.. So my GI dr. has to put in a nasojejunal feeding tube which will bypass my stomach and go directly into the small intestine. I’m not getting enough nutrition because my stomach isn’t moving food well, and that’s making all my symptoms worse. This NJ tube placement will be done in the OR on May 16th! It’s kind of a big step, but I’m past a medication stand-point and I’m losing weight too fast. When I see the mito specialist June 17th, we’ll see if he thinks I need a permanent feeding tube.

It’s Official!

Thu, 17 Apr 2014 02:43:00 GMT

P.S. Please continue to keep Justina Pelletier and her family in your prayers. Her health is getting worse by the week, she’s losing her hair, and she’s swollen all over. This is a great article (written just today) by someone from MitoAction about the difference between medical child abuse and mitochondrial disease: http://www.mitoaction.org/blog/why-mitochondrial-disease-looks-nothing-medical-child-abuse It also includes an update on Justina. If you can’t finish the whole article, read paragraphs 3 and 4. We need to get her home!

Latest update!

Sat, 05 Apr 2014 02:42:00 GMT

I mentioned in my last post that I’ve been dealing with severe vertigo and a bunch of new, ongoing GI issues (nausea, weight loss, decreased appetite, stomach pain). Well, my GI dr. and neurologist quickly got me in this week, and I’m so glad I was able to see them. They’re wonderful!

Because of this, I have to be on a mainly soft food/liquid diet for now, and that’s not good news since I’ll probably lose even more weight. Dr. P couldn’t even hear any abdominal sounds with his stethoscope—this means the food isn’t moving well out of my stomach. He’s putting me on a proton pump inhibitor drug and a compounded medication that will hopefully help this dysmotility issue.. I see him again and the nutrition therapist in less than 3 weeks!

These symptoms on top of everything else has been challenging to manage all at the same time, but I thank and praise God for His mercies that are new every morning !

Symptoms and Setbacks

Sun, 23 Mar 2014 01:17:00 GMT

Hello friends,

-Migraines
-Complex Regional Pain Syndrome
-Nystagmus
-Ptosis
-External Ophthalmoplegia
-Tinnitus
-Myoclonus
-Sleep-disordered breathing/sleep apnea
-Hypersomnia
-Muscle weakness/wasting
-Hypotonia
-Fatigue
-Premature Atrial Contractions
-Postural Orthostatic Tachycardia Syndrome
-Slight Tricuspid Valve Regurgitation
-G.I. dysmotility
-Dysphagia
-Hypermobility
-Cervical spine instability
-Mild scoliosis
-Dysautonomia
-Tremor
-Vertigo
-Muscle spasms/cramping in right hand

THIS is the nature of mitochondrial disease.

I’ve also been having some setbacks in physical therapy and occupational therapy. My brain isn’t recognizing where my left foot is, and I’m having sensory/proprioception problems. The dizziness came back again, too. But my physical therapist is awesome, and I know he’ll do all that he can to try to help these issues.

My occupational hand therapist is wondering if the muscle spasms/cramping in my right hand is from dystonia , so he’s having his colleague take a look.

In addition to all of this, I’m experiencing bad stomach pain after eating. And it doesn’t change with the type of food (gluten-free or not). I really hope this isn’t delayed gastric emptying.. Last year, I had that gastric emptying scan which came back normal, but I didn’t have this symptom then.. If it’s not better within the next week or so, I’ll have to tell my GI specialist.

MRA results and more!

Thu, 13 Mar 2014 03:07:00 GMT

Good news/Bad news

Wed, 26 Feb 2014 02:55:00 GMT

I got my MRI results, and the report says I have levocurvature of my cervical spine which wasn’t there before. I also have wasting of several vertebrae, and my C5-6 disc narrows the ventral CSF space of my spinal canal.

When I got those recent MRIs, the doctors forgot to order an MRA (magnetic resonance angiography) of my neck which my neurologist requested. Sooo….guess what. I have to get yet another MRI which will be my 12th one so far. x[

I also started experiencing dizziness/blurred vision this past week, and it’s been horrible….my neurologist still suspects possible TIAs. Thankfully, my MRI is scheduled for this coming Monday. The fatigue has been really bad, too, and I had to sleep 16 hours yesterday. :[

I should be hearing more about the plan soon. :]

http://abcnews.go.com/Health/advocates-fight-teen-justin-pelletier-held-state-pysch/story?id=22312907

http://www.huffingtonpost.com/cristy-balcells/first-do-no-harm-how-we-f_b_4843997.html

What happened last week

Fri, 14 Feb 2014 03:24:00 GMT

Last week was tough. For once, it’d be nice to have no adventures. ;P

Wednesday afternoon, I started experiencing a bad headache, but I wasn’t too concerned because I get migraines (they usually don’t last more than a day). So I just waited for the headache to pass. It was still there the next day, though, and I started struggling because of the pain. My left drooping eyelid got especially bad. And none of my usual nerve pain meds or Ibuprofen and Aleve touched the pain. As I mentioned in my previous post, my neurologist wondered if I had a TIA or small stroke.. And so I headed to the ER. Because of the snow, I couldn’t go to OHSU’s ER, and I hated that I had to go to a different hospital. Long story short, that was a terrible mistake because this particular ER didn’t know “me” and my complicated medical history. They didn’t even do a full neurological exam. All they did was give me one hydrocodone/acetaminophen tablet. They sent me home.

The adventure wasn’t finished. ;P I woke up because my blood sugar dropped very low (a bad issue associated with mitochondrial disease). My heart was pounding, I was shaking, sweating, and extremely weak. I laid on top of our stairs, unable to move. My mom had to quickly spoon feed me grape juice to get my blood sugar back up. It was hard for me to even suck from a straw because I was so weak. I had to sleep a lot after that, and it was too exhausting to even watch a movie.

That episode on top of two ER visits did me in, and I’m still trying to get better from this weakness.

One step forward, two steps back (again)

Thu, 06 Feb 2014 03:45:00 GMT

Hey, friends,

Just a quick update! Thank you so much for all your steadfast prayers and support as I continue this incredibly long journey.. All of you so encourage me. <3

My big neurology appointment was originally scheduled for next Tuesday, but it got moved up to this morning! That and having a sleep medicine follow-up as well this afternoon made for a busy day.

Dr. G also put in an order for me to have somatosensory evoked potentials done again. I had this long test done back in January of 2013, but she wants to repeat it to re-evaluate my spinal cord because I have very hyper reflexes which isn’t normal.

Keeping the Faith

Wed, 29 Jan 2014 04:20:00 GMT

This recent article makes me happy. :] It’s pretty much the only happy news in this post. lol

http://dailyparent.com/articles/the-nations-top-five-pediatric-hospitals/

Appointment updates!

Sat, 18 Jan 2014 04:32:00 GMT

But, we’re supposed to only use our throat muscles for swallowing purposes… So because I’m using those muscles to speak AND swallow, I’m fatiguing them. And THAT is why I experience choking. Soo, Speech (together with physical therapy) is going to try and strengthen my diaphragm muscle…

Thankfully, I had my CPAP (continuous positive airway pressure) machine, and that helped somewhat. But it’s going to be a hard challenge to find a balance and not overdo things in future therapy sessions.

Next month, I have an appointment with Dr. C’s brace clinic. Not sure what to expect with that, but maybe I’ll be able to get rid of the crutches!

First post of the new year!

Fri, 10 Jan 2014 03:31:00 GMT

The day after Christmas, I had my first speech language pathology appointment with the swallowing clinic at OHSU. The therapist wanted me to get a FEES study (fiberoptic endoscopic evaluation of swallowing) done to take a look at my vocal cords, etc. For the 5th time that month, I had to go through yet another tube insertion through my nose…! Those hurt so bad. >.< Hopefully that will be the last for a long time..

This past Monday, I had my first modified barium swallow study and another esophagram.

Tuesday I began physical therapy again—I’m now seeing a new therapist at OHSU, one who specializes in neurological/neuromuscular diseases. Next week, Lord willing, I get to try this new contraption, sort of like a robotic leg. He wants to see if this will help me walk more easily with my left-sided weakness. Sometime in the future, he is also going to have me try these leg braces that will hopefully make walking easier as well. I’m excited to try both!

Yesterday, I saw an allergy/immunology dr. For the past several years, I’ve been getting big canker sores in my mouth almost every other week. I had a very extensive allergy test to see if any foods are the cause of them. Thankfully, I’m not allergic to wheat, dairy, citrus, etc. I’m so glad. I am very allergic to all kinds of trees, grasses, molds, pollens, etc. During the test, I developed huge hives and swelling all over my arm! It was horrible! I’ll spare you the gross pictures.

Since food is ruled out as the cause of my canker sores, he’s now not sure what’s going on. Maybe it’s because I have Ehlers-Danlos Syndrome and my connective tissue is not strong.. ?

Next week, I have speech therapy for my voice/swallowing issues, physical therapy, and a follow-up appointment with my physical medicine doctor!

P.S. 5 of my doctors (my spine surgeon, physical medicine doctor, GI specialist, sleep medicine dr., and even my podiatrist. lol) made Portland Monthly’s Top Doctors issue for 2014! Almost all my other doctors made the top docs list in 2013. I really am so blessed with such great medical care! =)

Reflections on this past year 2013

Wed, 01 Jan 2014 03:29:00 GMT

Another year is just about over! As I look back on these past 12 months….2013 was filled with unexpected events and a lot of “firsts” (and “seconds”). You could say this is my belated Christmas letter.. 😉 I’m sorry if this is a bit long….a lot happened this year. lol In the middle of January, […]

Home!

Wed, 18 Dec 2013 03:06:00 GMT

I wasn’t really expecting this, but the neurologists that I saw this past Friday think I also have a genetic neuromuscular disorder called Congenital Myasthenic Syndrome. (here’s a great summary of CMS: http://ghr.nlm.nih.gov/condition/congenital-myasthenic-syndrome )

This on top of Ehlers-Danlos Syndrome, Complex Regional Pain Syndrome, Postural Orthostatic Tachycardia Syndrome….that’s a lot of syndromes! My case is so complicated. :/

They agree with Genetics that this neurologic issue is my primary problem, and the Mitochondrial Disease is secondary. Basically, the CHAT gene mutation that was found in my DNA is disrupting the signals between nerve cells and muscle cells. That’s why I have muscle weakness, eye movement problems, difficulty swallowing, etc. They’re not 100% positive (and they may never be because anything with genetics is so complex), but I am already being started on a drug called pyridostigmine which is a cholinesterase inhibitor. Their hope is that this will improve things and slow the progression.

Day 10!- Genetics evaluation

Thu, 12 Dec 2013 01:29:00 GMT

Hi, everyone!

I will update again soon!

Day 9!- my schedule

Wed, 11 Dec 2013 02:08:00 GMT

Yesterday:

Saw cardiology and orthopedics for my POTS disorder and back pain. Will update some other day about how these appointments went. ��

Today:

It snowed about 4 more inches this morning here in Cincinnati! Sooo fun and beautiful.

Had an abdomen x-ray to follow up on this GI test I had this past Thursday called a sitz marker study.

Saw Pulmonary Medicine once again and went through Part 2 of the pulmonary function test to check lung function/strength.

Was able to do something fun after my appointments and visit the Newport Aquarium in Kentucky! The oregon coast aquarium in Newport, Oregon pales in comparison! �� These white alligators were on display at the one in Kentucky! Soo weird but amazing! I’ll try to post a pic when I get home.

Tomorrow:

Have a super early appointment with the mitochondrial disease specialist and genetic counselor in Genetics. Will be discussing my nuclear mitochondrial exome sequencing results.

Also have a physical therapy consult in the afternoon at one of Cincinnati Children’s neighborhood locations.

Hopefully GI will be calling with my esophageal, antro-duodenal, and colonic manometry test results. Bracing myself as the doctors said results can often be normal even when experiencing GI dysmotility..

I hope to update with results tomorrow night! But if not, then definitely after my appointment with Neurology on Friday.. ��

Good night, everyone!

Update- Day 5!

Sat, 07 Dec 2013 01:45:00 GMT

Hello all!

Tomorrow, I have a second sleep study scheduled. Pulmonology wants more info related to my sleep disorder. Don’t have results yet from my pulmonary function test. Hopefully this Monday!

Yesterday- Day 2…

Wed, 04 Dec 2013 17:10:00 GMT

Hi guys!

The NG tube in my nose finally got removed this morning! *sigh of relief* It was so miserable with it in—every time I swallowed or spoke, the tube moved around way too much and made my throat really sore. The nurse had to tape the tube down three times!

~Day 1~

Tue, 03 Dec 2013 00:31:00 GMT

Hellooooo from Ohio!! 🙂 Thank you so much for your prayers! I so appreciate all of you! I’m afraid this will have to be quick since I have a long day tomorrow. My parents and I made it to Cincinnati safely. 🙂 My mom and I were blessed to fly first class (thanks to mercy […]

Tests and More Tests…

Thu, 21 Nov 2013 03:22:00 GMT

Hey friends!

Nov. 21st— Tomorrow I have to get an abdominal ultrasound which is the 2nd GI test that the Motility medical director at Cincinnati Children’s requested.

Nov. 22nd— Friday I have a gastric emptying scan scheduled in Nuclear Medicine which will take 3-4 hours.. This is the 3rd GI test that Dr. K wants.

Nov. 25th— A barium Upper GI study is scheduled on this Monday. For the test, I have to drink about a cup and a half of barium..

Nov. 27th— I see my Sleep Medicine dr. for a follow-up because I started using continuous positive airway pressure (CPAP) last week!

November 28th— My extended family is coming over for Thanksgiving at my family’s house.

December 1st— My parents and I leave for Ohio!

Dec. 2nd— first appt. with one of the GI motility drs.

Dec. 3rd— I’ll be seeing Pulmonary Medicine. Immediately after that appointment, I’m getting admitted to the hospital. Anesthesia will come to see me in my hospital room, and I’ll be having a nasogastric tube inserted to prepare for the GI procedures the next day.

Dec. 4th— will be taken to the OR where Dr. K will do several extensive GI procedures, including taking biopsies and checking for anything abnormal like inflammation, ulcers, etc.

Dec. 5th— Dr. K will start manometry testing in my hospital room.

Dec. 6th— Depending on the above GI test results, Dr. K may perform further studies like an esophageal manometry or PH-impedance probe test..

Dec. 7th— I have a tentative 2nd sleep study scheduled Saturday evening if the Pulmonary Medicine docs want more sleep info..

Dec. 9th— On Monday I’ll be seeing Cardiology and Orthopaedics.

Dec. 11th— I have an appt. with the mitochondrial disease specialist and genetic counselor in the Human Genetics dept. We’ll discuss my nuclear mitochondrial exome sequencing results. Neurology will see me as well possibly after this appt. or on Thursday/Friday.

The coordinator in GI told me that this schedule is bound to change, so we just need to be prepared to be flexible..

Praying you all have a blessed Thanksgiving!!

Just HAD to share! :)

Wed, 13 Nov 2013 03:37:00 GMT

Wonderful news—my Cincinnati trip this December is a go!! Thanks be to God, the GI motility disorders team has fit me in on their schedule! I’m SO happy. =) Originally, this was thought to be impossible because they are booked out till mid-January and they could only see me if my GI dr. here did a hospital-to-hospital transfer. But, 4 days ago I spent an unexpected weekend in the ER for severe esophagus pain and swallowing issues, and I lost another 2 pounds…. So my GI specialist here in Portland spoke to the Motility disorders medical director at Cincinnati Children’s regarding these worsening issues, and by the grace of God, Dr. K is squeezing me in on his schedule, and he already booked the OR for all the testing he wants to do. Before I leave for Ohio, Dr. K wants me to have 4 or so additional GI tests done here before Thanksgiving. This is gonna be a super busy 2 and a 1/2 weeks!!

This is the plan:

On Dec. 3, I first see Pulmonary Medicine. After that appointment is the consult with Anesthesia (for the GI procedures), and then I see Neurology.

Wednesday through Friday (and possibly Saturday), Dr. K will do his extensive GI procedures, and I think they’re admitting me to the hospital for all of this.

Saturday evening (Dec. 7th) is my tentative 2nd sleep study. Last night, I started CPAP for my sleep-disordered breathing, and if I don’t notice any benefit with CPAP, then the doctors at CCHMC will have me try BiPAP at this 2nd sleep study.

On Monday the 9th, I see Cardiology (consult for dysautonomia), and afterwards, I have an Orthopaedics appt. with the Spine Center for the chronic spine pain I’ve been dealing with.

Wednesday is my appointment with Human Genetics—I’ll be seeing their genetic counselor and mitochondrial disease specialist.

Thursday through Friday is left blank in case any of these doctors want additional testing..

Thanking the Lord for His goodness,

kerissa

This Passing Tide…

Wed, 06 Nov 2013 03:48:00 GMT

Yesterday, I saw my physical medicine dr. for a 4-week follow-up on my spine pain. Sadly, physical therapy hasn’t been helping, and Dr. C thinks this chronic spine pain is related to my muscle weakness (from the underlying neuromuscular/mitochondrial issue). So he referred me to the Spine Center at Cincinnati Children’s for a second opinion when I’m there in December.

Lately, I’ve also been having issues with swallowing/choking (in addition to weak chewing muscles), so Dr. C put in an order for speech language pathology here and possibly a swallow study. He wants to speak with my geneticist in Ohio about this new problem in case I need to see Speech there, too.

Regarding my GI system, I’ve lost 4 pounds in two weeks.. If this keeps continuing, I’m going to hit 78 lbs. very soon! I did get referred to GI at CCHMC, and the team is currently reviewing my records/referral.

I’ve been super busy getting all these appointments lined up in Ohio! It now looks like we’ll be there for about 2 weeks (and longer if necessary). My parents and I leave for Ohio in only 3 1/2ish weeks..!

Many blessings on your week,

kerissa

Upcoming Trip…….

Sat, 26 Oct 2013 02:09:00 GMT

Hopefully after I see this mito specialist, I can begin “treatment,” including the “ mito cocktail .” For my TRAP1 gene mutation, Dr. Boles through Courtagen said that aggressive antioxidant therapy can be helpful, and I look forward to starting that.

Your prayers for wisdom would be appreciated! Pray that I would patiently endure and not be focused on all my symptoms all the time.

love and hugs,

Well, that wasn’t too bad! :)

Thu, 17 Oct 2013 02:06:00 GMT

The procedure hardly hurt at all! Can you believe it? Maybe it’s because he’s an anesthesiologist (my first spinal tap last year was done by a radiologist, and it was oh so painful)…

Medical Updates

Fri, 11 Oct 2013 02:31:00 GMT

This past Friday, I had a follow-up with Dr. F, my neuro-ophthalmologist. She’s so so sweet! The external ophthalmoplegia (weakness/paralysis of the eye muscles) in my left eye is stable at the moment which is great news! For those who don’t know, my left eyeball can’t look to the left very well at all which isn’t much fun…but there’s not a lot that can be done for treatment, so she just wants to keep monitoring it.

The Long Awaited DNA Results: Part 2

Thu, 03 Oct 2013 00:59:00 GMT

The following two mutations are ones that are likely related to my mitochondrial disease:

Dr. Boles said CHAT mutations respond favorably to anticholinergic esterase inhibitor treatment, and he also wrote that TRAP1 mutations can respond favorably to aggressive antioxidant therapy. That’s great news!

One of my friends shared this quote with me recently, and I thought it was just perfect!!

The Long Awaited DNA Results: Part 1 (because the whole report is 13 pages long..!)

Tue, 01 Oct 2013 00:52:00 GMT

I wasn’t expecting them to find so many mutations! 23 were found in all….! That’s horrible.. :

You want to hear something a little scary? The lab found a mutation in the RYR1 (ryanodine receptor 1) gene which is associated with things like central core disease , minicore myopathy with external ophthalmoplegia , and malignant hyperthermia which can be fatal.

So the medical director of Courtagen (Dr. Boles) said I “am at risk for malignant hyperthermia , including potentially serious/lethal complications under anesthesia.”

Wait till my pain dr. (who is an anesthesiologist) hears about this! Dr. Boles wrote that “it is prudent to consider this patient (me!) as affected with MH.” He said my parents and siblings should be considered to be at high risk of developing MH as well until proven otherwise.

I also have a mutation in the GARS (glycyl-tRNA synthetase) gene which can cause things like Charcot-Marie-Tooth disease , distal hereditary motor neuropathy , and other disorders like those. My variant, P.K102R, is “rare and predicted to be damaging by algorithms of protein function.”

Part 2 of these results will come soon..

Sleep Results

Tue, 24 Sep 2013 03:45:00 GMT

Today was the appointment. I asked Dr. H if he has good news or bad news, and he said he has “gray news.” Lol!

Incredibly sweet and kind, my sleep dr. spent over an hour with me, going over the sleep study results and all of his recommendations. He has an awesome bedside manner!

So here’s what’s happening when I sleep:

So Dr. H wants me to do a 3-month trial of CPAP, but he suggested I wait until after we get more results/answers on what’s going on neurologically since CPAP can cause central apnea. That wouldn’t be good!

Day 5: Raising Awareness

Fri, 20 Sep 2013 02:26:00 GMT

http://www.washingtonpost.com/local/education/arlington-5-year-old-raising-awareness-for-rare-mitochondrial-disease/2013/09/18/c09c4a16-2065-11e3-8459-657e0c72fec8_story.html

Dr. Richard Boles and his 10-year old patient Kylee at Children’s Hospital of Los Angeles:
http://www.wetreatkidsbetter.org/2013/09/kylees-story-advocating-for-awareness-of-mitochondrial-disease/

Part 2- the next part of my journey (Mito Awareness Day 4)

Thu, 19 Sep 2013 01:57:00 GMT

Exactly one year ago, I was readmitted to the hospital for 8 long days due to worsening leg weakness. It was horrible. My left leg felt dead and oh so heavy. Once again, I had to be seen in the ER for the 3rd time in only 5 days.

I became so used to how things work in the ER. I was examined by medical students, residents, nurses, and attending physicians. Poked and prodded a million times, I had tubes and tubes of blood drawn to check my erythrocyte sedimentation rate (ESR), complete blood count (CBC), c-reactive protein (CRP), INR, activated partial thromboplastin time (APTT), anti-nuclear antibodies (ANA), thyroid stimulating hormone (TSH), creatine kinase (CK), complete metabolic set, and differential.

I was tested for Lyme Disease, Lupus, Lambert-Eaton Syndrome, Loeyes-Dietz Syndrome, and Ehlers-Danlos Syndrome (Type IV-vascular). All those came back negative….

By that time, my Acetylcholine receptor binding antibodies blood test to check for Myasthenia Gravis was completed, and to my great surprise, I tested slightly positive by one-tenth of a point. One-tenth.
Doctors still weren’t sure if I had MG because the lab in Portland they sent the blood to often gave false positives. So the neurology team sent a fresh blood specimen to the Mayo Clinic. Unfortunately, doctors told us results wouldn’t be finished for 4 weeks.

My half of the hospital room was so cramped. It was nothing like my beautiful spacious room on 10K. I was so tired, so I said goodnight to my family and tried sleeping. I would have had a wonderful night’s sleep if it wasn’t for the lady in the bed next to me. I heard she had amputated toes and a recurring wound infection. For some reason that night, she had nightmares, so every 15 minutes, she screamed and yelled out loud and talked in her sleep. All throughout the night. I didn’t get much sleep as you can imagine. I shed a few tears, homesick, a little upset with all that had gone on, and not liking that unfamiliar place. I was so grateful I got my own room the next day!

Every single day in the hospital was like deja vu all over again. Bright and early in the six o’ clock hour, a phlebotomist knocked loudly on my door, flipped on blinding lights, and came to draw five more tubes of blood. I became so used to everything—I even started trying to sleep through the blood draws and new IVs.

Next up: Part 3- the time I had a 2 1/2 hour EMG/NCV study and my first spinal tap..

Part 1- My first visit to the ER/first admission to OHSU

Wed, 18 Sep 2013 01:46:00 GMT

It was a Wednesday. September 5th, 2012. To this day, I still don’t know what caused that severe headache. Maybe it was stress… A couple weeks before, I began volunteering in my local hospital’s neonatal intensive care unit. At the time, volunteering didn’t seem stressful to me, but I was still getting used to walking long periods (the spinal cord stimulator I had implanted a year before helped the CRPS pain, but being on my feet for several hours once again aggravated the CRPS and I had flare-ups while volunteering). Also, I was fighting a cold.

The attending physician at Doernbecher’s ER wanted me to get some MRIs, but because I had a metal implant in my back, that was contraindicated. We were in a dilemma. My pain dr. didn’t want me to get a CT scan because of the high-dose radiation, but the dr. in the ER said that was the only thing we could do. Despite the risks, I decided on the CT scan, so Dr. M ordered a brain CT and one of my cervical spine (both without contrast dye). CT scans are incredibly fast, and we had results in no time! Imagine my dismay went they both came back normal. I got sent home but had no clue how I’d “make it” another day.

Saturday, my drooping eyelid got even worse to the point that my vision was blocked. I was miserable, trying to deal with that, worsening headaches, neck pain, and several canker sores in my mouth. This time, my mom called the dr.-on-call who worked with my pain specialist. They recommended that I head back to the ER, and they even told the ER that I was coming. *sigh*

When my parents asked her what she thought was going on, she mentioned that I could have an autoimmune neuromuscular disease called Myasthenia Gravis (which means “grave muscle weakness”) or Multiple Sclerosis but that I need to go through further neurological work-up. When she left the room, I looked both conditions up online. Reading the list of symptoms, mine didn’t fully match with either of them. It was a complete mystery, and I hated that I was so complicated.

Other than a sweet visit from my pain dr. and one from a family friend, the minutes slowly crept by. At 1:00 AM, I was still in the ER. My nurse came to wheel me to Radiology where I had 2 more CT scans but this time with contrast dye. I definitely didn’t want more radiation, but the doctors really wanted more images to check for stroke or carotid artery dissection. Contrast dye for CT is totally different from that used for MRIs. When the tech injected the dye into an IV, it felt like burning hot liquid traveling through my body from head to toe.

At 3 AM Sunday morning, I finally got admitted to my own hospital room on 10K, the neurology floor. Dead tired, I slipped into the bed sheets without even brushing my teeth or eating something. I was NPO in the ER, so I didn’t eat food for more than 14 hours.

I woke up at 6 that morning, hungry and needing to use the restroom. It was still dark out, so I ate a CLIF bar that I had brought in my bag. I then dozed off for about an hour. A tech later came to wheel me to Radiology once again where I had 2 chest x-rays. If I did have Myasthenia Gravis like the doctors wondered, they wanted to take a look at my lungs and see if I had trouble breathing.

My case was very difficult to the doctors. I had no fatigueable component to my muscles which can indicate MG, but the fact that my drooping eyelid was slightly better that day made things challenging as Myasthenia Gravis can present with intermittent weakness. But since they were still waiting on pending blood work, the doctors believed I was safe for discharge home. I was glad!

What is Mitochondrial Disease?

Tue, 17 Sep 2013 01:39:00 GMT

In honor of this special week across the globe, I’m going to try blogging every day through Friday. Today I want to share some basic facts about mitochondrial disease!

Here are just some of the many symptoms:

1. More kids die from mitochondrial disease than from pediatric cancer. Shocking but true! Now that my eyes and ears are opened, I hear so many news stories and articles of kids and adults fighting this terrible disorder.

2. There are 44 different variations of mitochondrial disease. This makes diagnosing difficult and challenging. To make matters worse, there are so few mitochondrial specialists in the nation. Patients often go undiagnosed for years.

3. Every 15 minutes a child is born they will develop some type of Mito Disease by the age 10.

4. The following are some of the symptoms that I experience: fatigue, migraines, nystagmus, drooping eyelids, tremors, dysfunction of the autonomic nervous system, chronic nerve pain, G.I. issues, problems with sleep, muscle weakness and atrophy, exercise intolerance, tinnitus, hypermobility, nausea, etc.

Tomorrow I will be blogging about how I first got started on this mito journey! Many of you probably don’t know what happened to me around this time one year ago…

P is for Perspective

Tue, 10 Sep 2013 00:58:00 GMT

Hi, everyone! It’s good to be back to the blogging world!

Last week, I saw the sleep medicine doctors and had my first sleep study. Normally, the doctors have the techs wake the patients up at 6 in the morning, but Dr. H wrote in the order to let me sleep till noon the next day. I was glad! The study was extremely interesting, and the techs taught me a lot about sleep disorders. But I really hope I don’t have to repeat the experience. :o) I should get results within two weeks!

This past Thursday, I also saw my neurologist and had my 4th EMG/NCV study. The results were abnormal—namely, my right tibial motor nerve shows prolonged distal onset latency and increased insertional activity. Not sure if this is mitochondrial-related…

The spinal tap Dr. G’s ordering is to check 5-methylhydrofolate levels and lactate. She’s gonna be in touch with my pain dr. this week to see if he would like to do the procedure.

I’ve been following a blog and facebook page of a mom who has 4 little daughters—her two youngest are battling an extremely rare disease that doctors think is an unknown mitochondrial disorder. My health issues pale in comparison to theirs!

GREAT news!!!

Fri, 16 Aug 2013 01:50:00 GMT

God is sooo good! When I got home from my G.I. appointment this afternoon, I went to check my email, and there it was……….right at the top of my inbox—an email from the lab in Massachusetts!!!

It means appealing is finally over after 6 and a 1/2 weeks, and our insurance has agreed to cover the whole cost of the exome sequencing!!!!! Ahhhhh! I can’t stop smilin’! =) Praise the Lord—all glory goes to Him!!

This lab has been amazing. If you ever need genetic testing of your DNA, I highly recommend Courtagen! They’ve been so efficient and compassionate, and they never gave up! I’m truly blessed to get testing through them.

Do you want some more good news? After waiting over 2 months, my wheelchair will be delivered on Thursday the 22nd! We get to stay at the beach the following week, and I’m so thankful I’ll have my chair by then.

I’ll be taking a blogging break for a couple weeks but will start it up again the first week of September. That week I have 4 doctors appointments! :

Praying the rest of your August is blessed!

Until next time!

Thrown a Curve Ball #2

Sat, 10 Aug 2013 00:23:00 GMT

1. another lumbar puncture (spinal tap) — I can’t even remember what it is he wants to check in the cerebrospinal fluid because it was too complicated..

2. whole exome sequencing — if the lab in Massachusetts doesn’t work out, he recommended one in Maryland.

3. repeat electromyogram and nerve conduction study

4. possible muscle biopsy

Closed Doors

Fri, 02 Aug 2013 01:46:00 GMT

All that has happened has been such a great learning experience, and it constantly reminds me to fully rely on God for wisdom.

So here’s the plan:

1. The referral/records review process in San Diego takes 4-5 weeks, and thankfully, next week will be 5 weeks! We will see what this mito specialist says..

2. Even if he is willing to see me, that still probably wouldn’t be till next year as he is booked out. So I’m researching other mito specialists that could possibly see me in the meantime.

In other news, cardiology on Monday went well. In the middle of July, I stopped the saline infusions because sadly I didn’t notice anything, and my “good” vein in my right arm is developing too much scar tissue from countless IVs and blood draws. This in turn made it difficult for the nurse to keep placing a new IV every time which aggravated the CRPS pain! So in a way, I’m glad to have stopped the infusions.

Dr. A wants me to try a combination of two meds for the dysautonomia, but I won’t try them until I see a mito specialist..

This coming Thursday on Aug. 8th, I have another heart echocardiogram scheduled because she wants me to get a current baseline for this year.

******

This is totally random, but do you need a good laugh? Read these below.

Thrown a Curve Ball

Sat, 27 Jul 2013 00:55:00 GMT

My G.I. system hasn’t been functioning well at all for the past 2 weeks, I’m starting to get right-sided muscle weakness, and as I wrote before, I’m losing movement in my left eye.

I also got my holter monitor results last week—I wore a holter for 48 hours, and in just that short of time, the report states I had over two thousand single premature atrial contractions (PACs) and over fifty PACs in pairs.

Plus, my sleep hasn’t been great…I often wake up in the middle of the night with sopping, sweaty legs. The holter report also said my heart rate dropped to 55 bpm during that particular night. So my neurologist ordered a sleep study for me. Unfortunately, the place is booked, so the study isn’t until September 4th.

I see my neurologist in 2 1/2 weeks and my cardiologist this coming Monday.

Full of Awe

Tue, 23 Jul 2013 02:31:00 GMT

It’s been almost 3 weeks since my saliva tube for the exome sequencing got sent off to the lab!! Counting down 3 more weeks.. With this new test, the lab can sequence over 1,100 genes! Being excited is an understatement. Knowing that there may be even more potential answers is so encouraging.

Look at this picture below. That, my friends, is what’s in every person’s DNA…! This picture alone speaks of God’s wisdom and handiwork! Getting the chance to have my nuclear DNA sequenced is eye-opening. I truly serve and worship a great God!

And as I was thinking about this, going through all these health trials is really part of God’s good purpose! If I didn’t have any of these problems, then I wouldn’t have the opportunity to learn all of this! I thank the Lord for His plan in my life. So please don’t wish my life any different.

Isn’t this SOOO fascinating?? =)

Also, if none of my health issues had happened, then I wouldn’t have met this precious little guy back in April at the Ronald McDonald house in Ohio. I never grow tired of this picture. Isn’t he the cutest 2 year old ever??

He recently had a bone marrow transplant and is soo brave.

Hard Week

Sat, 13 Jul 2013 04:08:00 GMT

This has been another difficult week. On Wednesday, my 89 year old grandpa passed away suddenly, faster than all of us were expecting. He was in the end stages of kidney failure but given 4-6 months to live. But this past Wednesday, he had a catastrophic event—the social worker thinks he must have had a heart attack or something like that. I already miss him so much. :'( This is the second family death in not even 2 months.

One of the things I’ll always remember about my grandpa is how he always made me laugh:

One of my favorite pictures with him taken just one month ago. <3

Love So High

Tue, 09 Jul 2013 03:26:00 GMT

This past Saturday, a dear mom from my church passed away after a long, long battle with cancer. I am going to miss her so much. :'( I first got to know her more when I graduated from high school with her daughter. And when I got home from the hospital last September, she came to my house and blessed me with a beautiful orchid plant. I’ll never forget that visit with her. It was such an encouraging time, talking about books and all things medical-related. We were fighting different health trials, yet we shared a bond because both of us could at some extent understand what we were going through. She was the epitome of joy. And she sent me such sweet cards and emails that I treasure still today.

Whenever I saw her in person, I always thought to myself, “If she can do this, so can I!” She was such an inspiration to me.

Please pray for her beautiful family—her husband and 3 daughters. <3

Listen to this song. It will bring tears to your eyes:

More tests..

Wed, 03 Jul 2013 00:12:00 GMT

Yesterday:

Today:

I saw my neuro-ophthalmologist this morning, and she did another full exam. Dr. F gave a few reasons why I can’t move my left eye very well.

1. I either have weakness of the eye muscles due to a mitochondrial disorder…

it’s something entirely different like…

2. an enlarged cranial nerve

3. inflamed eye muscles

Results are IN :)

Wed, 26 Jun 2013 22:02:00 GMT

This past Thursday, I received my mitochondrial whole genome sequencing results from Cincinnati. The report states that I have a missense sequence variant in my mtDNA.

“ This variant, mt.13376T>C, results in the substitution of threonine for isoleucine at amino acid 347
in the ND5 gene.” Now that’s a confusing sentence! But at the same time, I’m so amazed at God’s wisdom and power in creating the human body! We truly are fearfully and wonderfully made!

In other news, my cardiology appt. went great last week! The dr. is so caring. She even gave me a hug when we said goodbye. :o) She’s very knowledgable about POTS and even trained in Ohio with one of the first doctors who learned how to treat POTS.

This coming Monday, I’ll be starting IV saline infusion therapy twice a week at the hospital. Each infusion takes 2 1/2 hours long! But hopefully this will help lower my high heart rate and decrease some of my POTS symptoms. If these infusions are helpful, then I’ll possibly get a port placed.

After my appt., I also wore a holter monitor (portable ECG) for 48 hours. I should get those results soon.

Hope all of you are having a blessed week. <3

God is FOR us

Wed, 19 Jun 2013 00:14:00 GMT

Hey, everyone!

I got my autonomic test results in the mail this past Friday, and the dr. who wrote the report said they’re abnormal. I wrote in my last post that my neurologist said they’re “normal,” but I think what she meant is that I don’t have those autonomic diseases like Pure Autonomic Failure or Multiple System Atrophy.

But, on the other hand, I do have some other problems: during the tilt-table portion of the test, the dr. said my heart rate went all the way up to 175 bpm….! That’s definitely not normal. He also said I have orthostatic hypotension due to hypovolemia.

And, my Quantitative Sensory Function test was an abnormal study as well. I have a large-fiber neuropathy which causes loss of joint position and vibration sense and sensory ataxia.

I recently read this verse from one of my favorite chapters in the Bible: “What then shall we say to these things? If God is for us, who can be against us?” (Romans 8:31). Then, at my little brother’s high school graduation (btw, GREAT job, Curtis!! So proud of you!), we sang this worship song called “Our God.” This is the chorus:

P.P.S. I have my first cardiology appt. this Thursday! I’m looking forward to seeing this dr. because Cincinnati Children’s recommended her and she specializes in POTS.

Have a great week, my friends!

PDX :)

Tue, 11 Jun 2013 23:53:00 GMT

My pastor has been teaching through the book of Hebrews in the Bible…and let me tell you, it has been such a wonderful sermon series full of encouragement and hope! I feel like that book was written just for me. On Sunday, he shared an acronym he made up to give us a better understanding of why we go through suffering. (An abbreviation for our Portland airport is: PDX .)

We go through hardships in life to

P urify

and

D evelop

us,

so that we can become

e X cellent.

I just wanted to share with you that bit of a gem! It’s simple but full of truth! I hope it encourages you!

******

I recently started this new medication for my headaches, and I realized that I haven’t had nystagmus in a while! Maybe that’s because there’s somehow a connection between headaches and nystagmus….or maybe it’s because I’ve been sleeping a lot lately. But whatever the cause, I sure am thankful that terrible symptom has lessened! In a couple of weeks, my pain dr. has to check my liver enzymes as this certain medication can cause an elevation in the transaminases..

My wheelchair fitting last Wednesday went great! It’s going to be an ultralight rigid frame…and guess what my color’s going to be? Acid green metallic. I’m hoping it won’t be super bright, but I do want it to show up more than a darker color. Sadly, the chair won’t be ready for another 4-5 weeks…

My neurologist called this morning with the autonomic test results.. They’re normal! I had a hard time understanding why they’re normal (as I clearly have autonomic symptoms, but maybe they fluctuate), so I emailed her, and she just got back. She said the autonomic tests that I had done only test some autonomic functions and are not 100% sensitive. She went on to say that it is, in general, extremely difficult to diagnose and treat autonomic nervous system disorders… Now I wonder what percentage of patients have “abnormal” results..

Still waiting on the mtDNA blood work…it’s likely going to take 2 more weeks to be completed. And, the doctors at Doernbecher’s metabolic clinic are currently reviewing my case before I can make an appointment.

Still lots of waiting to do!!

Monday Miscellany

Tue, 04 Jun 2013 00:22:00 GMT

On Friday, I had my autonomic nervous system testing done. What an interesting experience! I’m constantly amazed at all these types of machines and their different purposes. I should get results this week!

This part of the test checked how well my sensory system is working. I held this little remote and pushed the “yes” or “no” button when I could or couldn’t feel the vibrations/cold temperatures.

This test is called the Quantitative Sudomotor Axon Reflex test. It’s used to assess my small nerve fibers which are linked to the sweat glands.

The tech injected this neurotransmitter called Acetylcholine into these “capsules” against my skin. She also stuck all these electrodes on the left side of my body. The stimulation sure stung!

Here are all the graphs she had to record!

This is the tilt-table test. It’s done to look at how my blood pressure and heart responds to the change of position.

******

I got referred to Doernbecher’s Metabolic program, and hopefully I can schedule an appointment this week! The doctors there specialize in metabolic disorders, and they can help diagnose/evaluate patients with mitochondrial diseases.

I had my second occupational therapy appt. today. My therapist is so sweet! Her name is Amy. She’s been teaching me how to “pace” and conserve energy. This Wednesday, after my grandma’s memorial service, I have my appt. at the OHSU seating clinic to get measured for my wheelchair. A physical therapist named Cinda (who specializes in neuro/muscular disorders) will be helping the wheelchair rep. evaluate and give input on everything. After that, Amy’s going to talk with her and hopefully form a better therapy plan for me.

I’m still waiting for the mtDNA sequencing to be completed. Hopefully soon!

In Rememberance

Sat, 25 May 2013 00:09:00 GMT

This may be a long post, but I just wanted to put my thoughts down on “paper.”

Tuesday, I saw my pain dr. And, as fun as it always is to see him, this was kind of a hard appointment. I asked him if he knows much about mitochondrial disease, and he told me that there are really bad cases where your muscles stop working at a young age and pretty soon you die (and mito doesn’t just affect muscles…it affects all the body systems since every organ needs energy)….or, there are those cases where you don’t know you have mito until you’re 70. And we’re not sure yet which case I am… Although, the younger you are, the more severe it is.. And I’m only 20. This is what I love about my pain dr. His honesty. And his compassion. I can’t remember his exact words, but I do recall him saying something like—all these conditions I’m dealing with don’t define me and we just need to figure out how to proceed with things and live a successful life.

I asked him for a new pain med to try since I still get severe headaches. So he told me to consider this muscle relaxer that has been known to help neuropathic pain (and headaches) and maybe even calm all the myoclonic jerks I have every day.

The plan is to await the whole genome sequencing results. If it comes back normal (as it very well may be), then I pursue a muscle biopsy and/or more genetic testing through a very experienced lab down in California. The dr. there has been doing a whole bunch of research that mitochondrial disease and CRPS is possibly connected. And he’s even found mutations linked between both.

Monday night, my 90 year old grandma suddenly had a heart attack (just like what my grandpa had about 26 1/2 years ago). The doctors were able to stabilize her, but she was in a coma in the icu and on a ventilator. They were going to leave her on life support for a couple days and reassess her in 24 hours. After my pain appt., dad, mom, and I went to see her. And I’m so thankful I did. Because…at around 10:25 pm that night, my grandma went to be with Jesus. We’re still in shock because it all happened so suddenly.

The next day, I wanted to read the section in Revelation where it tells us of the coming new heaven and new earth. I long for that day when God “will wipe away every tear from [our] eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” (Revelation 21:4) How wonderful it will be! No more genetic diseases with no cure, nor more heavy hearts, no more out-of-proportion pain, no more death! That is why I don’t have to fear the future or of dying young (if that’s God’s plan for my life). This earth is not my home any way. I am going to my real home to dwell with Jesus Christ!

One last story—I follow a mother’s blog of a 5 year old girl with mitochondrial disease. And one time, that little girl was not doing very well. A friend asked the mom, “Is she dying?” The mom replied confidently with no fear, “Aren’t we all dying?”

Needing patience..

Wed, 15 May 2013 02:17:00 GMT

Next week, I have an appointment with my pain dr. I haven’t seen him since January! Can’t wait to hear his thoughts on what the doctors in Cincinnati think.

I’d appreciate prayer for patience. I guess you could say I’m getting a little weary of this journey.. I have a really hard time waiting! But then I look at these pictures below and am in awe of God’s wisdom and power (in creation and in my life). He has a perfect plan, and his timing is just right! So until this journey is finished, I will keep pressing on!

“Scars and struggles on the way, but with joy our hearts can say…”

Thu, 09 May 2013 00:10:00 GMT

I saw my neurologist today, and she is referring me to Seattle Children’s mitochondrial medicine and metabolism program. Here’s a funny fact: the only mitochondrial programs in the Northwest are in Washington and California but not Oregon…! Not sure when that evaluation/consultation will be yet, but she is faxing the referral today and labeling it as “urgent”!

I’m also going to be undergoing autonomic nervous system testing at OHSU. In addition, she mentioned me having a sleep study done because I’m so fatigued and also dealing with increased muscle jerking. But she decided not to do this right now since I have a lot on my plate.

My mtDNA deletion/duplication analysis came back normal (but only 5-20% of mito patients have a del/dup anyways), so now the doctors are going to be doing something called whole mtDNA genome sequencing. The results can be normal also. If so, the next step is a muscle biopsy. As you can tell, diagnosing a mitochondrial disorder is really challenging and takes many steps.

On Monday, I have to get a kidney/bladder ultrasound! I sure feel like a human “guinea pig”!

Happy 1st of May!

Thu, 02 May 2013 03:09:00 GMT

Whew! All THESE names are the many types of Mitochondrial Disease (and no, I didn’t memorize all this… ;). This, my friends, is what I’m going up against. : I have a long road ahead of me. I may have one of these or several (as some go together)… But nothing is impossible with God!

Still waiting on blood work… The doctors are first checking my mtDNA for deletions/duplications.. Then, if that’s normal, they will keep going deeper in..

Next week, I have an appointment every single day except Friday… It’s gonna be busy!! I see my neurologist on the 8th, and we’ll go over the Cincinnati trip and what to do next.

*********

Now, on to more light-hearted stuff.. Our visit to the Creation Museum (by Answers in Genesis) on our last full day in Ohio was an amazing experience! If you’re ever in Kentucky, I highly recommend visiting it because it won’t disappoint! The Creation Museum not only explores the 6 days of Creation. We learned about fossils, Noah’s ark, evolution, Jesus, the ice age, and a whole lot more! Plus, their Dragons bookstore was soooo much fun! I bought this super cute turtle necklace that has a hematite stone on it!

Enjoy the following pictures!! Sorry that a lot of them are out of order!

Home sweet home!

Fri, 26 Apr 2013 01:42:00 GMT

Here are some pictures of our visit to the National Underground Railroad Freedom Center. It is a really nice memorial!

Last full day in Cincy, Ohio! : Day 7

Sat, 20 Apr 2013 01:29:00 GMT

I had another great Genetics appointment this morning! Dr. S gave lots of good recommendations/tips on how to better manage Ehlers-Danlos Syndrome. She also had us meet a Cincinnati Children’s expert on mitochondrial disorders. He is the dr. who will be looking at my mtDNA to check for deletions, duplications, etc. All the doctors I saw this past week had a conference together to talk about my symptoms and all the possible diagnoses. They said I’m a very complicated case. : They’re still considering Mito, but they also said all my symptoms could be a form of Dysautonomia.. So Dr. S gave the names of a couple of experts on this particular condition who practice in Oregon. I have lots of appointments coming my way when I get home!

We had our last dinner at the Ronald McDonald House this evening! Sob! I’m gonna miss all the wonderful families we’ve come to know! I’m especially going to miss this super cute 2-year-old who’s waiting for a bone marrow transplant. He always has a huge smile and such chubby cheeks! Ronald McDonald came to see all the families in the dining area. He’s so good with kids! I was able to get one last picture with him.

A Visit to the Cincinnati Zoo! : Day 6

Fri, 19 Apr 2013 00:29:00 GMT

Pain eval: Day 5

Thu, 18 Apr 2013 00:23:00 GMT

The dr. wants me to go to a 3 week inpatient pain rehab program because I need to get better function-wise and outpatient physical therapy isn’t enough. But…the program is in Cleveland, Ohio!!!!! : So we’re gonna research things more and possibly look into different ones, although the only other high-reputation programs are in Chicago, Florida, John Hopkins, or at the Mayo Clinic in Minnesota. Of course, going to something like this won’t be for a while anyways as I need to get a little better first.

Neuro evaluation: Day 4

Wed, 17 Apr 2013 01:09:00 GMT

Hello everyone! Just a short update tonight.. Unfortunately, we hardly took any pictures today as we mainly stayed indoors at the Ronald McDonald house and went to my Neuro appt. this afternoon. The Cincinnati Zoo closes at 5 pm, so we didn’t have enough time to visit it. Hopefully tomorrow or Thursday, though! 🙂 The […]

Genetics visit: Day 3

Mon, 15 Apr 2013 23:57:00 GMT

all the colored pins represent all the Ronald McDonald houses in the world!

our room

RMH gives each patient a welcome bag full of fun things

standing in line for a yummy Italian dinner—shrimp scampi, baked ziti, salad, and garlic bread! all the meals are prepared by different families and groups! so blessed by them!

I had a great, productive Genetics visit. The dr. thinks something else is going on that’s not a part of EDS/CRPS/POTS. She thinks I may have a mitochondrial disease…so once I see Neurology and Pain in the next couple days, I’ll get blood drawn to test my mito DNA this week. How exciting that we may be getting closer to an answer!

Dr. S and me =)

Cincinnati: Day 1 and 2

Mon, 15 Apr 2013 01:05:00 GMT

in the lobby of Cincinnati Children’s

a first look of this HUGE museum

One Day Closer to OHIO

Mon, 08 Apr 2013 01:52:00 GMT

*I see Genetics on Monday the 15th, then Neurology (4/16), and lastly, Pain Management (4/17). Each appointment is over 2 hours long! Thursday and Friday (4/18-19) is left open in case the doctors order more tests or refer me to other departments.*

Love this song by Jeremy Camp because it really inspires me to keep walking this journey for God’s glory. My prayer going into this next step is that, whether the doctors give me a new diagnosis or no diagnosis yet, God will be praised and honored.

I have seen so many teardrops
Fall to the ground
I’ve held the hand of God’s children
Once lost and now found

I have walked it and I know
That my King is alive
And no other one
Has the love You provide

I want all who I meet
To see You through me
I want all that I speak to be You

If there’s anything that I would pray
It’s that the whole world would seek Your face
And in spite of who I can be
Please reign in me
Reign in me

I know it starts with the desire
To give You control
To lay down all my dreams
So You have my heart in full

Lord I know this weary battle
It begins on my knees
In everything I want You to be pleased

I can see the waters rising
I can hear the hearts reviving
Through You there’s nothing we can’t do

Let’s carry the people crying
And be a generation fighting
To lead the lost into Your hands

If there’s anything that I would pray
It’s that the whole world would seek Your face
And in spite of who I can be
Please reign in me, oh yeah
Reign in me, yeah
Reign in me, yeah

Reign in me, reign in me
(In my heart , in my mind , in my soul
Be the Lord of my life, take control )
[x2]

Can’t Stop Smilin’

Tue, 26 Mar 2013 21:26:00 GMT

Mercy Medical Airlift’s famous slogan is “Be Blessed.” I truly am so blessed! Today, I just received an email from Mercy Medical—a flight itinerary! 🙂 Can you guess what that means?? 😀 MMA is providing my mom and me with a round-trip flight to Cincy!! Everything’s already booked and confirmed! We leave PDX on Saturday, […]

Crochet Funnnn

Tue, 19 Mar 2013 23:24:00 GMT

Here are some fun pictures that my brother took of my crochet projects. 🙂 my work basket 😉 the project on the right is what I’m currently working on. that’s a dishcloth that I’m making for my mom 🙂 from left to right: a baby ball, baby cap, baby bootie, and bib (sidenote-I […]

One day at a time

Wed, 13 Mar 2013 01:44:00 GMT

Hey, friends!

I’ve been severely fatigued lately which is why you haven’t heard from me in a while. But I think I can manage typing a little update for you. :o)

I thank God for the blessing of being able to crochet. It keeps me busy as I keep waiting. I have to limit my reading (sob!) otherwise I’ll get nystagmus in my eyes, and I don’t want to watch movies all day, so I thought I’d start up crocheting again—It’s not too hard on my hands and doesn’t really aggravate the CRPS in my left hand which is great! I’ve currently made two dishcloths, a baby ball, a baby bib, and am now working on baby booties. So fun! Pictures to come soon! :o)

Today I sent in an application to Mercy Medical Airlift for possible flight assistance to Cincy. I should hear from them within the week regarding the next step.

Blessings to you!

Kerissa

The 3 P’s—PT, Philippians, and Pain

Sat, 02 Mar 2013 01:11:00 GMT

Happy 1st, friends! There are only 45 more days till my first appointment in Cincy! Can you tell I’m counting down the days? 😉 This week, I officially started physical therapy twice a week instead of once, and I can tell you, this is gonna be so much more fun. 🙂 I love having two […]

Before the pain passes in peace…

Thu, 21 Feb 2013 01:27:00 GMT

I wanted to share this other poem with you. It’s been on my heart lately.

April 15th…a date near or far?

Thu, 14 Feb 2013 03:53:00 GMT

Updates:

Head: My headaches have still been very bad. I have to use an ice pack every now and then again since pain meds don’t help. I’m very thankful for ice. :o)

Shoulders: My right shoulder is still pretty loose and my shoulder blade pops out often, so my physical therapist wants me to see him twice a week now. My left shoulder is starting to become a problem since it has to work more than my right..

Heart: Lately I’ve been experiencing a lot of chest pain. I’m not sure if it’s because my heart is always tachycardic (POTS issues) or if something else is going on. Praying that the EDS clinic will be able to find the answer.

Stay tuned for more Cincinnati news!

Tuesday Thoughts

Wed, 06 Feb 2013 03:16:00 GMT

This afternoon, I also saw the neuro-ophthalmologist at the OHSU Casey Eye Institute. She and a resident did a whole neuro work-up with testing, but unfortunately, today I wasn’t experiencing the nystagmus, and she really needs to see it herself to pin-point what’s causing it and everything. So, once the abnormal eye movements come on again, I’m to let her know and schedule a follow-up appointment.

I read this “poem” a few weeks ago and wanted to share it with you. It was written by a mom who has a precious little adopted girl with congenital heart defects. Ivy Joy has had to have numerous open heart surgeries, something a parent never wants to see their child go through. The mom (I encourage you to read her whole blog post !) wrote, “Sometimes God answers our prayers differently than we expected. But He still answers.” So very true.

Quilt pics :)

Tue, 29 Jan 2013 00:57:00 GMT

My right shoulder is doing poorly. I have an abnormal scapulothoracic rhythm (?) with a shoulder impingement from the instability. Everything’s still being worked on in physical therapy, but it sometimes seems like my joints are just getting looser!

P.S. I hope you like my new blogspot background! =)

Upcoming events!

Tue, 22 Jan 2013 03:15:00 GMT

On Wednesday the 30th, my pain dr. will be performing a bilateral lumbar sympathetic block on me. 🙂 This will be the first time in his career he’s ever done one for both feet, so it will be two procedures back to back. He’ll block the sympathetic nerves on the left side of my spine, […]

Recovering

Tue, 15 Jan 2013 04:29:00 GMT

Until next time!

P.S. Please stay well, everyone! I learned in the hospital that the flu shot only protects one from Influenza A, not B (which is what I have).

The flu

Sun, 13 Jan 2013 17:17:00 GMT

Thank you everyone for your love and support! I can tell you are praying cuz my fever broke last night. 🙂 The ambulance ended up taking me to OHSU yesterday cuz my heart rate was so high from my condition POTS, I was dizzy, and my fever was 103 even with Aleve. They gave me lots […]

Prayer requests

Sat, 12 Jan 2013 20:09:00 GMT

Well, this has been fun…just kidding. This past Sunday, my mom came down with a fever and body aches, and she still has a low-grade one even today. I had 6 appointments this past week (none of which my mom was able to go to, so my sweet older brother and sister took me to all of them), and let me tell you, I never want to schedule 6 in one week again. Wednesday’s was from 8-12 pm, and yesterday’s was at 5:30-6-30 in the evening! I’m so exhausted. My little brother came down with a cold, too. *sigh*

So this morning, I came down with a sore throat, a cold, and a fever of 101.3. In addition to all that, I’m dealing with nystagmus again, and last night in bed, my heart rate was over 120 from the POTS, and I couldn’t lower it at all. My headache’s so bad, and my feet hurt from the CRPS. My sis, too, came down this morning with a high fever of 102.2! x[ *groan*

I’d just appreciate your prayers that we will all be able to get over this soon. This has been a stressful week, and this coming Tuesday, I have an appointment with one of my doctors and I really don’t want to cancel it.

Tests and more tests..

Wed, 09 Jan 2013 02:20:00 GMT

I’ve been so exhausted from dealing with POTS and not sleeping well at all cuz my feet are going through a painful CRPS flare. I’ve been getting shiny skin and red blister-like spots on my toes which aren’t good CRPS signs at all. Waiting to hear from my pain dr. about all this..

Thursday my neurologist will be doing an electromyogram study on my left leg, and on Friday, I have my lumbosacral plexus MRI.

Thank you so much for your prayers!

Reflections on this past year 2012

Mon, 31 Dec 2012 21:43:00 GMT

It’s hard to believe that my first blog post was written one year ago today! As I reflect on this past year, I thank God for the endurance He provided me and my family to make it through 2012. Now that this blog has been up and running a full year now, it’s easy for me to not fully ponder its title sometimes. But as this year comes to a close, I’d like to once again think about these three words: Pain with Purpose .

These past months have been filled with things I never would have imagined:

I even completed a medical assisting program at the beginning of the year,
and I just don’t know if anything will ever come of that…

Lots on my plate

Fri, 28 Dec 2012 02:36:00 GMT

I had a great neurology appointment today! Things are really moving along now. :o) This is what’s on my plate the next few weeks. She wants me to get another MRI, but this time it will be of my lumbosacral plexus nerves (isn’t that fun to say?). 😉 She also ordered another diagnostic test called […]

Yesterday

Thu, 20 Dec 2012 01:18:00 GMT

This will probably be my last post before Christmas Day, so I just wanted to wish all of you a very

This is one of my favorite Christmas songs. It’s soo beautiful.

Another Hard Day

Mon, 17 Dec 2012 22:58:00 GMT

Everything is still raw, and I wept great big tears this morning, but I know all of you want to know the results of my MRIs, so here they are. I don’t have the report yet, but in one word, they are “normal.” I don’t understand. :'( I’ve asked God all morning, “Why??” I know I should be full of joy, but honestly, I’m so sad because this means I have to keep waiting for an answer. I’d rather have bad news than still no answer. I know how to accept bad news, like when I got diagnosed with CRPS and EDS. But having no answer…that’s so hard. These last 3 months have seemed like 3 years.

I have a follow-up tomorrow with my pain dr. and a follow-up on Dec. 27th with my neurologist. Here we go again. In her words, we have to go back to the drawing board. I was able to have a short phone call with her this morning, and I have to say once again, that I’m so thankful for her. She encouraged me and told me not to give up hope. She’ll do all she can to help. She’s still glad I had those MRIs cuz she was able to rule out a brain tumor or Multiple Sclerosis. I hope to talk with her about the neurological side of EDS because I have learned that there have been cases of EDS with ptosis and myoclonus.

If she still can’t find out what’s going on, the Mayo Clinic, John Hopkins, or someplace like those might be in my near future.. Also, in March, I have a follow-up with my spine surgeon. This past September, he told me that if I still have the headache in 6 months, then he said he’ll chase this more in terms of my cervical instability (which causes neck pain and headaches).

I am sad, but I know this isn’t the end of the world. As this song says, pray that I will take courage, knowing that my Lord and Savior will defend, protect, and uphold me with His righteous right hand.

the day has finally come!

Fri, 14 Dec 2012 00:34:00 GMT

This past Tuesday, my pain dr. squeezed me in to see him cuz an “egg” has been forming under my spine incision from the swelling. I have poor wound healing from the EDS, and it was pretty difficult for my pain dr. to remove the anchor and leads from my spine, so he’s not surprised that the area is inflamed. So he wants me to ice it every day. Praying the incision doesn’t bother me too much from lying on my back for so long tomorrow.

My subluxating shoulder isn’t doing too well. My physical therapist ended up having to tape it all over to keep the “head’ of my humerus bone from popping out all the time. I’m to ice this area, also, and later on, my physical medicine and rehabilitation dr. will possibly be ordering an MRI of my shoulder.

Next Friday

Fri, 07 Dec 2012 05:28:00 GMT

My MRIs got scheduled today!! Praise God. 🙂 I will be getting them on Dec. 14th. Wasn’t expecting that it’s gonna take 4 hours long from 9-1 PM!! Not exactly looking forward to 4 hours in the tube…lol. There won’t even be a break! That will be quite an experience… Once I know the results, […]

Explant Surgery 12/4

Wed, 05 Dec 2012 02:41:00 GMT

Anyway, I hope to get those MRIs this week, but that’s probably not gonna happen cuz insurance has to authorize it which takes a couple of days.

SCS explant surgery

Thu, 29 Nov 2012 00:58:00 GMT

Well, it’s official. My spinal cord stimulator explant surgery is scheduled for Dec. 4th!! Have to get there at 7 in the morning, and surgery’s at 9 AM. Today I had a pre-op phone appointment, and tomorrow I have PT. I hope my physical therapist is prepared for all this sad news I have to tell him… Surgery is in 6 days, and honestly, I’m so sad. Last year, on September 13th, having a spinal cord stimulator implanted was the happiest day of my life. It never entered my mind that a year later I would have to have my SCS removed. I never thought that a year later I’d have to go through the worst headaches of my life. I never imagined that a year later I’d have to soon get MRIs on my brain and spinal cord. As I think about all this, I’m just soo thankful I can’t know the future. If I knew last year that all this would happen, I don’t think I could have survived all these turn of events. So I’m so grateful that only God knows the future. He is in control. He’s holding my world in His hands.

And this is Your world, You made it

And all of creation is breathing because You sustain it

Jesus, by Your powerful word, You spoke out the earth and the heavens

So I will not worry or fret

My God is the God who will never forget

All of His goodness and all of His promises

He’s holding my world in His hands

And these are your days, You give them

All for your fame and all for Your glorious kingdom

Jesus, You have ordained all things to dwell in Your purpose

[ Lyrics from: http://www.lyricsty.com/kristian-stanfill-holding-my-world-lyrics.html ]

So I will not worry or fret

My God is the God who will never forget

All of His goodness and all of His promises

He’s holding my world in His hands

And I am Your child, Beloved

And all of my days my future is laid in Your promise

Jesus, to the end of the age, I am not alone or forgotten

So I will not worry or fret

My God is the God who will never forget

All of His goodness and all of His promises

He’s holding my world

So I will not worry or fret

My God is the God who will never forget

All of His goodness and all of His promises

He’s holding my world in His hands

Happy

Wed, 21 Nov 2012 23:56:00 GMT

Yayyyyy!!! Last night, I emailed my pain dr. and asked him if I could at least know what’s gonna happen before Thanksgiving. 😉 I just received a reply from him! He’s the best. 🙂 He told me he did speak with my neurologist today, and after discussing options together, they both agree that taking the […]

Still Waiting

Tue, 20 Nov 2012 22:36:00 GMT

Waiting….Waiting….Waiting. That’s what I’ve been doing. 😉 Which is why you haven’t read an update in a while. My neurologist and pain dr. are having a bit of a difficulty connecting. When my neurologist is free, my pain dr. is not, and vice versa. But I’m praying today’s the day I hear something.. I have […]

My Heart is Full :)

Fri, 16 Nov 2012 01:22:00 GMT

I seriously cannot tell you enough how much joy your “box of awesome” gave me this afternoon!!! Here’s proof that I smiled a ton:

All the goodies you gave me are my favorites!!! And I’ve been treasuring each gift! I’m so overwhelmed by your thoughtfulness and love. I’ll never forget this for years to come!!

So Blessed

Wed, 14 Nov 2012 19:31:00 GMT

Thank you so much, everyone, for your constant prayers and love!!! I seriously don’t know what I’d do without you guys. <3 Reading all your facebook posts and messages and your comments on my blog is super encouraging to me and I thank God for each of you.

My pain dr. spent a lot of time with me this morning. So thankful for him. He prescribed me a sedative so that I can sleep better, and he already put the order in to have my stimulator removed. BUT, he’s not gonna do it until he can get a hold of my neurologist. He’s really trying to find an alternative way to come to a diagnosis because if he removes my SCS, I may never be able to have another one implanted because of the possibility that insurance won’t cover it. Even if they did, a second stimulator may not work as well because of scar tissue in my spine. So I really understand why he doesn’t want to remove it.

Tyring to be patient in suffering..

Wed, 14 Nov 2012 03:18:00 GMT

My pain dr. squeezed me in to see him tomorrow morning at 7:15. Please pray like never before. I admit I’m scared. Even if he agrees to take my SCS out, I don’t know how I can go through a surgery like that with the way I’m feeling now. The implant surgery took over 3 hours, and an explant is even more drastic cuz of scar tissue. For those who don’t know, my neurologist told me to go to the ER last night. The doctors gave me IV toradol, oxycodone, and even IV morphine. None of it touched my headache. My teeth have been chattering non-stop from the pain and nausea. And even worse, when the nurse put my IV in, CRPS spread to my right arm. I’m devastated. In one second, my hand turned purple, swollen, cold. And now it’s been burning so bad. Pray that through all of this, my Lord and Savior will be glorified.

Asking for Prayer

Mon, 12 Nov 2012 21:05:00 GMT

I’d so appreciate your prayers. Yesterday afternoon, I started getting uncontrollable eye movements (called nystagmus). :'( It’s like I’m having an earthquake in my head, so I’ve been SO nauseous to the point that I sometimes feel like I have to throw up. Everytime I look left or right, it literally feels like my eyeballs are oscillating. Worst experience ever. I wish I could cut off my head! And I don’t usually say this, but I feel like crap (sorry, guys). That’s how bad I feel. x[ Pray that my pain dr. gets a chance to speak with my neurologist today and that he receives my message that I sent him. I told him I’d like my stimulator taken out before Thanksgiving if at all possible.. Pray that he understands. I’ve never ever felt this bad before, and that’s saying a lot..

phone call with my neurologist :)

Sat, 10 Nov 2012 03:18:00 GMT

Praise God!! My neurologist just called me this evening. 🙂 *sigh of relief* There was some sort of mix-up or something with my medical records, so she wasn’t able to look everything over until today. First, she told me that my EMG study was thorough enough so that I don’t have to have a second […]

Thoughts

Wed, 07 Nov 2012 19:15:00 GMT

Just wanted to share this blog post by a family who epitomizes true courage and trust in our Lord and Savior. They have 4 little daughters, and their two youngest were diagnosed with the same rare form of Mitochondrial Disease. Though they look like they’re doing so well physically, Addison and Audrina may not have much time left on this earth because of the nature of the disease.

Please keep this precious family in your prayers.

update

Thu, 01 Nov 2012 23:53:00 GMT

On Monday, I have another appointment with one of my orthopaedics drs. because my subluxating shoulder is getting worse. It hurts so bad, and something inside feels really stretched or torn..

Thankful

Tue, 30 Oct 2012 22:03:00 GMT

There are only 2 days till my neurology appointment on the 1st!!!! So happy. :’) This nausea has been terrible. Almost every night I can’t sleep because of it. I can’t wait to hear what the neurologist thinks about all this.

I will update you once I hear what happens!!

When I am weak, then He is strong..

Sat, 20 Oct 2012 20:41:00 GMT

Ever since the spinal tap, I’ve been having nausea, so something must have happened in my spinal cord when the doctor drew out cerebrospinal fluid… That was over 4 weeks ago! All this on top of everything else (headaches, drooping eyelid, leg weakness, CRPS pain, EDS problems, etc.) makes me miserable.

I have an appointment with the new neurologist that my pain dr. referred me to on November 1st. That seems so long from now, but I am grateful she had a cancellation because if she didn’t, I wouldn’t have been able to see her till December!! Please pray, tho,’ that she’ll have an even sooner cancellation before the 1st.

Little by little, we’re moving forward…

Wed, 17 Oct 2012 21:20:00 GMT

Physical therapy has been tough. My left leg still isn’t strong, and whenever I do a certain exercise, my right leg goes out of my hip socket or something like that (EDS problems once again..). My therapist told me to stop that exercise, and we’ll discuss this dilemma tomorrow when I see him.

Prayer Requests

Thu, 11 Oct 2012 19:27:00 GMT

Off to see the ophthalmologist! Please pray that he will be able to know what’s going on with my eye. It’s starting to look sunken in…horrible feeling. After that appointment, I have PT. 🙂 Please also pray that my therapist will be able to help not only my weak leg but also my right shoulder […]

More Waiting..

Tue, 09 Oct 2012 19:22:00 GMT

I recently read a chapter by Amy Carmichael that I wanted to share with you. It’s called “One Step at a Time,” and in it, she expounds on Psalm 119:105:

So as I wait and keep waiting for all “this” to fade away, I rest securely in the Lord! As the song above says, the Lord is “the keeper of my heart.” <3

Yesterday’s “Appointment”

Thu, 04 Oct 2012 18:40:00 GMT

Yesterday went so well! 🙂 This is actually kinda funny…I did see my pain dr. yesterday, but it wasn’t an “official” appointment like I thought it was going to be. I learned that if I ever need to see a St. Jude rep, the pain center has to book a room under my doctor’s schedule […]

Tomorrow

Wed, 03 Oct 2012 02:36:00 GMT

Would appreciate your prayers tomorrow morning. My pain doctor’s office called today, and he wants me to come in again tomorrow even tho’ I just saw him yesterday! Praying it’s not bad news… This is kinda unusual for him to want to see me so soon.. I will let you know what happens!

Good night, everyone!

Waiting

Tue, 02 Oct 2012 01:17:00 GMT

I’m one of 3 CRPS groups:

1. a person who gets CRPS but goes into remission (e.g., they can say they had CRPS)

2. a person who gets CRPS in, say, the foot, and it stays there and doesn’t spread at all

3. a person who gets CRPS and it becomes a whole-body spread (e.g., from the right foot, to the other foot, to the left hand, to the arm, to the back, etc.)

You got it! I’m group #3!

Soo, there very well could be some direct correlations.. But, as I said, he’ll need to think more on that the next few days..

I see the neurologist this Friday, and hopefully I know for sure then whether I have Myasthenia Gravis or not. Although my electromyogram study which can test for MG was perfectly normal, the Acetylcholine Receptor Antibodies blood test I had done in the hospital came back slightly positive (the lab they sent it to sometimes gives false positive results for some reason), so they redid the test and sent it to the Mayo Clinic in Minnesota. Isn’t that cool?

Crutches, Books, and Cards

Fri, 28 Sep 2012 04:10:00 GMT

I’ve been able to read some great books since being home!

1. “Grace: A Child’s Intimate Journey Through Cancer and Recovery” by Melinda Marchiano

2.”Implosion” by Joel C. Rosenberg

3. “I Come Quietly to Meet You” by Amy Carmichael

Happy Day

Wed, 26 Sep 2012 03:01:00 GMT

Since my symptoms are still unresolved, here’s the plan: I see my pain dr. this coming Monday (10/1). We’ll discuss the possible removal of my spinal cord stimulator to get that MRI. Can’t wait to know what his thoughts are on that.. I start up physical therapy again (I’ve been off of it for more than a month!) on the 3rd. And, on the 5th, I have a follow-up with my neurologist. So next week will be quite busy!

Good night!

7th night

Tue, 25 Sep 2012 04:45:00 GMT

Okay, hopefully tonight is my last night in the hospital. 7 nights and 8 days spent here is enough for me for now… 😉 I feel like it’s been too long since I slept in my own sweet bed! The reason I didn’t go home today is because the genetics team hasn’t seen me yet. […]

5th night in the hospital

Sun, 23 Sep 2012 04:55:00 GMT

God has been so good to me the past week. Every day in the hospital, I’ve seen evidence of His providence and mercy. You want to know what made my day yesterday? 🙂 I found out that Brian, a medical student that has been seeing me everyday for his neurology rotation, loves the Lord! 🙂 […]

…and the adventure continues.

Thu, 20 Sep 2012 04:29:00 GMT

Just wanted to write a quick little update before I head off to bed! For those of you who don’t yet know, I’m back at the hospital because my left leg suddenly became weak on Sunday. I now have to use crutches. Add that to my drooping eye and headache! All my doctors are saying […]

Thankful for medical care :)

Mon, 17 Sep 2012 02:21:00 GMT

So exhausted. Since Saturday morning, I’ve gotten like 1 hour of sleep!! My pain dr. and spine surgeon’s resident dr. on call told me I’d better go to the ER again yesterday. I was in the ER for about 12 hours!! Didn’t get my own room till 3 am in the morning. I ended up […]

A Visit to the ER

Sat, 15 Sep 2012 01:12:00 GMT

Well, friends, I had enough excitement for one day! This morning, I had to go to the ER at OHSU. My drooping eye has been getting worse (it’s been horrible), so my mom called my spine surgeon’s office and spoke with a resident dr. on call. He said that I’d better get checked out because any facial symptoms (like a drooping eye) usually mean something’s going on in the brain. My ER dr. was super nice! He really wanted to do an MRI, but my mom called St. Jude Medical to ask if getting one is really contraindicated, and they said I can’t get one. If I did, my device would probably malfunction and I’d possibly get an electrical surge through my body from the leads.. So I ended up getting a brain CT scan and a cervical spine CT scan with the lowest amount of radiation possible. The results show that I didn’t have a stroke. That’s good news! So this rules out one thing, and now I just have to wait till Monday when I see the spine surgeon.. I could have a Chiari Malformation in my brain which is common with EDS (but they don’t show on CT scans), or the cervical spine instability is causing the drooping eye and headache.. My appointment can’t come fast enough! Thank you so much for your prayers.

One year ago today :)

Thu, 13 Sep 2012 18:40:00 GMT

Never Forget…

Wed, 12 Sep 2012 00:24:00 GMT

another update

Wed, 12 Sep 2012 00:22:00 GMT

Hi, guys!

Here’s a little update: I’m being referred to see an orthopaedic spine surgeon who has a good knowledge of EDS and CRPS. Thankfully, I can see him this coming Monday. My pain doctors aren’t sure yet why I’ve been having a drooping eye and headache until I get some imaging studies done. An MRI is contraindicated because I have an implant in my back, and my pain dr. doesn’t really want to do a CT scan because of its high dose of radiation on a 19-year old. So we’ll be discussing this predicament with the orthopaedics dr.

My pain dr. doesn’t want to do anything for my hand yet until the head/neck problems are more under control. And I can’t have physical therapy at this moment because of the unknown..

Kerissa

Today

Tue, 11 Sep 2012 18:21:00 GMT

Hey everyone!

I will let you guys know what happens soon!

Kerissa

“Pain, pain, go away”

Mon, 10 Sep 2012 21:31:00 GMT

This is what I read: “Thus says the Lord who made the earth, the Lord who formed it to establish it—the Lord is his name: Call to me and I will answer you, and will tell you great and hidden things that you have not known.” (Jeremiah 33:2-3)

I’ll keep you posted! Thank you again for your support on this journey!

Having the Blues

Thu, 06 Sep 2012 22:33:00 GMT

So now you can tell why I don’t feel good. Plus, I haven’t been sleeping as well because of the CRPS pain and the headache. They wake me up in the middle of the night!

X-ray Results

Wed, 05 Sep 2012 02:34:00 GMT

I received the full report of my spine x-rays on Friday, so here’s the gist of it:

Right now, I’m still waiting to hear from my pain dr. about what’s next regarding all this and the CRPS pain. Not sure if he got back from his vacation yesterday or today..

“And I heard a loud voice from the throne saying, ‘Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.'” -Revelation 21:3-4

In Heaven with Jesus

Tue, 04 Sep 2012 02:56:00 GMT

Liam has his wings and Heaven has a new angel, that bright shining star up above, Liam has changed us forever. Fly high baby boy – so many friends there waiting – until we see you again, Grandma Nanci said it best – we’re shattered. Your support has been overwhelming and we read many of your postings to him so he knew how much he was loved. We still BeLiEvE in Miracles. -latest posting on Liam’s facebook page

There’s a hole in my heart now. I’ve been blessed to follow his story for many months, and everyday I would have another reason to look forward to a new day. Just by seeing his smiling face encouraged me in my trial to keep being strong in the pain.

Today I’ve cried tears of joy and of sadness. Tears of joy because this little 18-month old baby boy doesn’t have to suffer anymore. His body will no longer be swollen from the HLHS. He can learn how to walk and talk like other 18 month-olds, now that he has a new body in Heaven. He doesn’t have to be confined to a hospital bed any longer.

Update on Liam

Mon, 03 Sep 2012 19:53:00 GMT

For all who are with us on this incredible journey, we cling to your love and prayers. According to doctors, Liam’s time on Earth may be nearing a close. Liam is very tired of being confined to that bed and is ready to soar…..and you need wings to be able to do that. Please pray for comfort, peace, and divine wisdom. Whatever the Earthly outcome, we know that God is with him. Please pray for the miracle we call Liam. Roar and soar little cub! -from Liam’s facebook page

Little Liam, you are an amazing fighter. Even tho’ I don’t know you personally, I’ve followed your journey for so long now. My heart is breaking, but we’ll be so happy for you whether you stay here on earth or soar to heaven. We love you.

Prayers for Liam

Mon, 03 Sep 2012 03:27:00 GMT

Hi everyone,

Could you please keep sweet Liam in your prayers? He needs prayer badly. He has hypoplastic left heart syndrome, and his story has been heard all across the nation. His facebook page has over 60,000 “likes.”

https://www.facebook.com/pages/I-Love-Liam-Lyon/137992366273067

His family loves Jesus, and they asked for prayer for him 12 hours ago, and we haven’t heard since then..

Liam’s life continually inspires me as I go through my own little trial. He is so precious and such a fighter. Here is a little paragraph about him that I copied from his facebook page:

William Elijah Lyon, affectionately dubbed Liam, was born February 18, 2011 at 3:25am to Whitney and Brody Lyon in Ft. Smith, Arkansas. Although he was about 5 weeks early, he was a perfect size weighing 6 lbs and measuring 19 inches long. But it was quickly apparent there was a serious problem. Thanks to Dr. Seglem and his diagnostic skills – Liam was quickly diagnosed with hypoplastic left heart syndrome. Our boy had a congenital heart defect that is fatal if left untreated. He was transferred that evening by Life Flight to The Children’s Hospital at St. Francis in Tulsa, Oklahoma. The doctors spent a week trying to decide the best course of action and decided he needed a transplant instead of the first of three palliative surgeries (Norwood, Glen, Fontan) and he was transferred to Arkansas Children’s Hospital in Little Rock, Arkansas. He and his mom were transported by an awesome Angel One team sent by the hospital. He has been there ever since. The doctors here thought he should have the surgeries to try and make his heart work as long as possible – maybe even until he was a teenager! He had the Norwood, but it wasn’t working quite right and they had to operate again. It quickly became apparent that the palliative surgery iwas not performing as expected and he was listed status 1A for a heart transplant. He had the Glen, got better for a week, and got much sicker – and then he had a heart transplant. This is his journey and we love him. There are so many people who have followed his story and encouraged us with their prayers. We love you all.

PLEASE pray. Here’s a song that comes to mind when I think of Liam. It was originally written for a little 5 year old girl with brain cancer. Her website has received over 14 million visits. Here’s her story: http://www.caringbridge.org/visit/mcraekate

Please watch this video and read the words. And most of all, please keep Liam in your prayers.

God is near, little Liam.

EDS problems….

Thu, 30 Aug 2012 20:29:00 GMT

My physical therapist called me yesterday with the results of my cervical spine x-rays that I had done last week. It’s not exactly good news…. I don’t have the full report yet, but basically I have cervical spine instability from the EDS. This could be what’s causing the bad spine pain I’ve been having, the […]

Back to the Pain

Sun, 26 Aug 2012 21:40:00 GMT

This past Thursday, the CRPS pain came back in full force. :'( My hand/arm is back to being cold, sensitive, swollen, discolored, and painful!! Thursday and Friday, I guess you could say I really struggled with this turn of events. I was a little frustrated. I didn’t injure it, I was so careful not to overuse it, and still, the pain went back to what it was like before the block. I didn’t understand. But then, this weekend, God spoke to my heart and gave me peace that He is still in control in the midst of this flare-up. I still have a lot of questions, but I realize once again that some of those might not be answered in this life. All I can do is surrender this to Jesus and believe with my heart that He has a good purpose behind the pain. He’s not finished with me yet. And in the meantime, as I learned from a Philippians sermon at Solid Rock today, I just gotta “keep going” and forget what lies behind (all the pain, all the disappointments, all the frustration). I want to “ press on toward the goal for the prize of the upward call of God in Christ Jesus.” (Philippians 3:14)

On Friday, when I arrived at the center for rehab, I actually didn’t have an official PT appointment. After assessing my neck, spine, and arms, my therapist talked to one of my pain dr.’s colleagues and asked her to order two cervical spine x-rays. I’ve been getting bad cervical spine pain, and he’s not sure if it’s CRPS pain or something else going on because, when I side-bend my neck to the left or right, I can’t lift my arms and it hurts. So I had those x-rays done right away, and now I’m waiting once more for the results…. I should hear back this week.

Excited :)

Thu, 23 Aug 2012 00:34:00 GMT

Yesterday, I got trained to volunteer in the neonatal intensive care unit at St. Vincent’s. 🙂 It went great! There definitely was a lot to learn! We were taught how to use our ID badges to get past restricted doors. 😉 We learned how to put together infant oral care bags that doctors use every […]

All About Me in ABCs

Fri, 17 Aug 2012 23:45:00 GMT

Y-Yuck : spiders, whether big or little!
Z-Zoo animal : baby elephant

What a day!

Wed, 15 Aug 2012 23:57:00 GMT

Since my voice is gone (I’ll explain why in a minute ;), I decided to blog now cuz I have nothing else to do…just kidding. But really, I pretty much can’t eat or drink, and I’m so hungry since I haven’t eaten since yesterday.. Anyway , here’s the story of my day:

So here I am, still not able to talk or eat well. If I try to swallow, I sometimes choke. My neck hurts really bad, too. I’m trying to wait patiently for all this to pass! I’m to keep a pain diary and record my pain level every hour for today, then once every day until I fill out the whole page. I’ll be seeing my pain dr. in a few weeks for follow-up.. I’m not sure what’s ahead…these blocks are temporary, but I really pray the severe pain stays away for at least a month!

Safe in the Arms of the Father

Mon, 13 Aug 2012 21:32:00 GMT

Well, it looks like I am after all having that stellate ganglion nerve block this Wednesday at 11:30!!! I’m actually looking forward to it now cuz my left hand isn’t doing well at all in this heat we’ve been having. My hand swells up, so the swelling pushes and presses on my nerves which hurts […]

Longing..

Thu, 09 Aug 2012 01:54:00 GMT

Yesterday was a longgg day. So tired now. We arrived at the Center for Health and Healing at 7:15 in the morning and didn’t get home till after 3:00. Almost 8 hours spent there!

Anyway, here’s an update on my left hand/arm:

Things are about the same. It’s still swollen, stiff, and discolored. Heat makes my hand swell up to the point that I can’t “make a fist.” Cold air (like wind and A/C) “burns” my skin.

My pain dr. set up another treatment plan for me:

I will let you guys know if I have the block for sure next week! I will only be going through with it if there is no improvement with therapy alone.

Striving to Endure

Thu, 02 Aug 2012 23:26:00 GMT

This has been one of the toughest weeks pain-wise so far. The wind even makes the burning pain worse, so I don’t like moving around! My hand/arm is sensitive, ice-cold, purple, and swollen. It’s been hard focusing cuz the pain has been so bad. I have to make myself do therapy. God has been giving His grace for each day, but it is hard waking up in the morning in pain and going to bed in pain. I see my pain dr. on the 7th, and I’m so thankful my appointment’s just around the corner.

Today, during my Bible reading, I turned to some of my favorites passages of Scripture that give me hope and encouragement. I hope they do the same to you!

“But for you who fear my name, the sun of righteousness shall rise with healing in its wings .” -Malachi 4:2

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction…If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort .” -2 Corinthians 1:3-7

“Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted…It is for discipline that you have to endure. God is treating you as sons. For what son is there whom his father does not discipline? … But he disciplines us for our good, that we may share his holiness .” -Hebrews 12:3, 7, 10

Looking to my Savior for strength! I will update again, soon!

Kerissa

Feeling refreshed!

Sat, 28 Jul 2012 18:49:00 GMT

One afternoon, my siblings and I went for a bike ride. I was doing quite well for a time, until we ended up at this huge (and I mean HUGE) and steep hill. I got off my bike to try walking up it, but suddenly I couldn’t even do that anymore. My legs wouldn’t move, and I developed a terrible, pounding pain in the center of my brain. I quickly sat down on the pavement to rest, and I started getting dizzy. I really thought I was going to black out from the POTS! I definitely didn’t want to go to the ED. Thankfully, I was able to make it back to the condo but it was kind of a blur. For a long time, the pain in my head didn’t go away. It felt like a vein in my head was going to rupture which can be a symptom of EDS. So grateful to the Lord that that didn’t happen!

And then, another day, I was playing racquet ball with my dad and two of my siblings. I enjoyed it immensely! But then the palm of my left hand got scraped by a sharp plastic piece sticking out from the edge of the racquet! Now it’s a little swollen. Right now, I’m waiting to hear back from my hand therapist about both of these “injuries”..

2 years ago today…

Sun, 08 Jul 2012 20:43:00 GMT

July 8, 2010, the day I had the foot surgery to remove a lymphangioma, changed my life. It’s hard to believe it’s already been 2 years!

Since that date, I have:

-seen so many specialists (it’d take a long time to count all of them on my fingers!)
-had 1 cortisone shot in my hypertrophic scar on the bottom of my right foot
-been diagnosed with CRPS in my right foot in March
-went through 1 lumbar sympathetic block procedure in April
(CRPS spread to my left foot in April ’11)
-had various diagnostic tests (an MRI, triple-phase bone scan, x-rays, nerve conduction study, heart echocardiogram, etc.)
-went through a 2-day spinal cord stimulator trial in August
-had a spinal cord stimulator implant surgery in September
(CRPS spread to my left arm in November)
-seen many pain psychologists, physical therapists, and occupational hand therapists
-had 4 stellate ganglion blocks in my neck from December to February
-taken Vicodin, Gabapentin, Pregabalin, Oxycodone, Tramadol, Nortriptyline, and Cymbalta
-been diagnosed with a rare genetic connective tissue disease called Ehlers-Danlos Syndrome
(CRPS spread to my upper back in April)

I know now all this was God’s purpose for my life all along. Before I was created in my Mom’s womb, He knew that I would have CRPS and EDS.

“For you formed my inward parts; you knitted me together in my mother’s womb.

I praise you, for I am fearfully and wonderfully made.

Wonderful are your works;

my soul knows it very well.

My frame was not hidden from you, when I was being made in secret,

intricately woven in the depths of the earth.

Your eyes saw my unformed substance;

in your book were written, every one of them,

the days that were formed for me,

when as yet there was none of them.

How precious to me are your thoughts, O God! How vast is the sum of them!

~Psalm 139:13-17

Both CRPS and EDS have stretched me and changed me like no other way! Sometimes, I try to remember what it was like before the first symptoms came on, but it’s hard to because it seems like I’ve had these conditions all my life. But I have learned so much these past two years, and it has been very eye-opening. As time goes on, I’m learning that these two conditions are gifts from the Lord.

I’m continually finding that CRPS and EDS go together. Because my connective tissue is abnormal, my nerves aren’t well protected and cushioned, hence the ongoing CRPS flare-ups. Lately, my joints all over have been popping and cracking from the EDS.. One of my fellow EDSers with CRPS will be having shoulder surgery in August and two possible hip surgeries. She’s been dislocating everyday which makes me wonder if that will one day be me! But I do have peace about the future and I know God is faithful. He will carry me through whatever happens.

Standing Firm in Christ

Mon, 02 Jul 2012 00:14:00 GMT

Yesterday, my sis, younger brother, and I went swimming at the Conestoga rec center. 🙂 It was a really fun time, considering that I haven’t been able to swim since around 2009 because of being on crutches. When we went to the beach the past two years, I could only watch my siblings swim. I […]

A Bump in the Road

Fri, 15 Jun 2012 22:07:00 GMT

Normal range of muscle tension: below 5 points
My muscle tension: over 22 points (this surprised all of us!!)

Normal hand temperature range: in the 90s
My hand temperature: around 77 degrees! :O

So for the next 45 minutes, I tried lowering those really high numbers in all kinds of different ways! My temperature went up to about 83 degrees, but my muscle tension number barely lowered one bit! I didn’t feel that tense, but from those biofeedback numbers, it gave all of us the picture that I have a lot of work to do about this!

At home, I will still be working on these techniques that he taught me. He is SO booked up right now, that my next scheduled appointment with him is on August 15th!!

Right after seeing him, I rushed down to the first floor for my weekly session of physical therapy. It was SO painful! For some reason, my neck hasn’t been turning left or right very well at all, so my therapist has been trying everything he knows to fix this new problem. It’s hard work!

Have a blessed weekend, my friends!

Miscellaneous Happenings

Tue, 05 Jun 2012 01:22:00 GMT

Until next time!

Kerissa A.

Yesterday’s Appointment

Fri, 25 May 2012 02:55:00 GMT

Had a great appointment with my pain dr. yesterday! 🙂 As far as the blood work goes, he’s concerned about my vitamin levels. My B6 level is high, and that’s not good because he said elevated B6 can cause nerve damage/pain… He wants me to contact my primary care dr. and see what’s causing this. […]

New Update

Mon, 21 May 2012 17:45:00 GMT

A humorous story:

Update: Last Friday, I finally received my blood work results in the mail! It isn’t the best of news… They tested the levels of my vitamin D, B6, and B12, and my D is too low even though I pretty much take one softgel a day. My B6 and B12 levels are waayyy too high even though I don’t even take B6 as a separate supplement!! This might not be a concern at all, but we will soon find out when I see my pain dr. My appointment with him is this Wednesday at 7:30 IN THE MORNING!!! :O The earliest yet for an office visit.. I will update again soon after I see him!

Rejoicing in Suffering

Thu, 10 May 2012 03:06:00 GMT

I recently memorized Romans 5:1-5, and it’s a beautiful passage of Scripture!

“Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ . Through Him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings , knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

New Developments…again

Thu, 03 May 2012 03:02:00 GMT

As I wrote in a previous post , my life is truly a “two steps forward, one step back” kind-of-thing. One and a half weeks ago, I was actually doing so well! I didn’t have burning pain in my left arm, and pretty much the only pain I had was localized in my finger from the initial trauma back in November. But that was not to last. On Friday, I noticed my left upper back burning. It wasn’t too painful, but the next day, things started feeling worse. By Monday, the burning pain spread to my right upper back, so I emailed my pain management dr., and by God’s grace, he had an opening for me to see him this morning. It’s been a long day. The CRPS has, in fact, spread to my back, and we’re not yet sure why. Today, my dr. told me CRPS doesn’t usually spread to other areas this quickly . This does happen but not very often. He said that, in other people, CRPS usually stays in one spot, like in the foot. But with me, CRPS is more of a whole body disease of the nervous system.

Sooo, now I am to get some lab work done, and if anything shows up positive, I will go back to the OHSU rheumatologist to once again rule out any other diseases/conditions. I will be starting up biofeedback with one of the doctors at the pain center. My pain dr. also wants me to switch the nortriptyline to a different pain med because the nortriptyline may partly be why I have tachycardia.. Waiting to hear back from him right now because the cost of the med I was going to try is SO expensive! The pharmacy told us it’s expensive because it’s a brand name and is classed as a tier 2 drug. :

fun news :)

Tue, 01 May 2012 01:27:00 GMT

Finding humor in a new diagnosis…

Wed, 25 Apr 2012 04:01:00 GMT

POTS (and no, this post has nothing to do with teapots, flower pots, coffee pots, or “chamber” pots 😉 A quick update, friends! Today, my primary care dr. diagnosed me with Postural Orthostatic Tachycardia Syndrome. What a long name! This is my third “syndrome” diagnosis…! POTS is a dysfunction of the autonomic nervous system and […]

Update on heart echo

Sat, 21 Apr 2012 01:40:00 GMT

Hi, guys!

As promised, here’s just a quick little update. Still waiting for my dr. to look over the results, but I did get a chance to see them today! The cardiologist said all looks normal, but some of the structures couldn’t be visualized very well for some reason, so I’m not sure what that means yet… I hope to talk with my dr. about all this next week. The chest pain, irregular heart beat, and tachycardia still hasn’t been resolved yet, so I’m praying all this can still be looked into in the future. I will keep giving little updates about everything!

Till next time!

Kerissa

Heart Echo

Wed, 18 Apr 2012 02:05:00 GMT

Tomorrow morning, after physical therapy, I will be getting my first heart echo! The test results may be perfectly normal, or they may show I have mitral valve prolapse caused by EDS. I’d appreciate your prayers! Pray that the test will clearly show whether I have MVP or not. I’ve been having chest pain and an irregular heart beat, so the doctors aren’t sure what’s going on yet… :

Yesterday, I read a powerful passage in 90 Days of God’s Goodness by Randy Alcorn. This devotional is filled with such meaning and richness! I highly recommend it! The following verse and quote below made me stop and reflect:

I will update as soon as I get the results of my echo! Thank you so much for your prayers!

Letting Go

Tue, 03 Apr 2012 02:05:00 GMT

The Lord is my strength and my shield;

in Him my heart trusts, and I am helped;

my heart exults,

and with my song I give thanks to Him.

-Psalm 28:7

A New Diagnosis

Tue, 27 Mar 2012 03:14:00 GMT

Hey, friends! 🙂 It’s time for a new update! About two weeks ago, I saw my pain management dr. It went well. I learned something new about him. 😉 He saw me reading Wuthering Heights, so he told me he read that when he took Advanced Placement English in the ol’ days. Haha! 😀 He’s […]

Experiencing Joy- Part 2

Wed, 14 Mar 2012 01:26:00 GMT

“Weeping may tarry for the night,

but joy comes with the morning.”

Psalm 30:5

By God’s grace, I have come a long way. Yes, the pain in my feet is still not completely gone, but it’s nothing like it used to be, and I’m so thankful.

“You have turned for me my mourning into dancing;

You have loosed my sackcloth

and clothed me with gladness,

that my glory may sing your praise and not be silent.

O Lord my God, I will give thanks to You forever!”

Psalm 30:11-12

God’s Providence- Part 1

Mon, 12 Mar 2012 04:57:00 GMT

I just finished writing in my journal tonight and thought I’d share with you my entry because today was my “March 11th Day”: Today marks the one year anniversary of the cortisone shot that I had in the bottom of my right foot. Those were hard days after I had that procedure. The unrelenting pain […]

A Faithful God

Thu, 01 Mar 2012 04:20:00 GMT

It’s been over two weeks since I last posted because life has been busy! I’m still trying to get used to this new medication I’ve been taking. It makes me sleepy, my mouth gets so dry, and if I get up too fast from sitting, I feel lightheaded. But, it has been helping the burning […]

“Two steps forward, One step back”

Mon, 13 Feb 2012 23:41:00 GMT

“The steps of a man are established by the Lord, and He delights in his way. When he falls, he will not be hurled headlong, because the Lord is the One holding his hand.” ~Psalm 37:23-24 After going through a pretty difficult week last week, one of my friends shared this section of Scripture with […]

A Praise :)

Mon, 06 Feb 2012 22:30:00 GMT

Wow! I usually try to post once a week, but last week was just plain busy that I didn’t get a chance to. So, to update everyone on what’s going on, here’s what happened last week:

Running the race set before me!

Fri, 27 Jan 2012 21:30:00 GMT

I love to run. 🙂 Yes, I can’t run long distances yet… But whether it’s running to the mailbox at the end of our driveway, running from a restaurant to our parked car, running up our long flight of stairs two steps at a time, or running to our couch to read my Bible […]

The Lord is my Strength

Thu, 19 Jan 2012 04:27:00 GMT

Though the fig tree does not bud

and there are no grapes on the vines,

though the olive crop fails

and the fields produce no food,

though there are no sheep in the pen

and no cattle in the stalls,

yet I will rejoice in the Lord,

I will be joyful in God my Savior.

The Sovereign Lord is my strength .

~Habakkuk 3:17-19

As I reflected on Habakkuk’s words, I thought about how they relate to me. Not in the sense of there being no grapes on the vines or sheep in the pen, but more like the following ways:

Though it’s almost been a year since I was diagnosed with CRPS in my foot

and I’m now dealing with it in my hand,

though I’m 19 and haven’t yet been able to continue my education after high school, like the rest of my graduating class,

though I can’t play violin yet because of the pain and stiffness in my fingers,

though faced with the uncertainty of the future

and how there is no cure yet for this condition,

yet “I will rejoice in the Lord, I will be joyful in God my Savior “

BECAUSE

The Sovereign LORD is my strength.

Now, after reading a few of my “thoughs,” you may feel sorry for me, but I don’t want you to. I just want you to know that God is still good in the midst of suffering, and I have made it this far because of the strength that my Sovereign Lord gives me for each day.

Yes, it’s been hard, but I actually thank God for this experience. If this never happened…

-I wouldn’t know all my caring doctors, nurses, and medical assistants

-I wouldn’t have been blessed with the friendships of my therapists and even the front desk receptionists

-I wouldn’t have become as familiar with medical terms and treatments (which may prove helpful later on!)

-My relationship with Christ and love for Him probably wouldn’t be as strong

-I wouldn’t have had a chance to share the love of Christ with those at OHSU and PRA

-and the list goes on!

So rejoice with me that the Lord gives strength and is sovereign over every area of our lives!

What I do at occupational hand therapy…

Wed, 11 Jan 2012 19:06:00 GMT

As an ending to this post, I want to leave this poem with you. May you be refreshed and encouraged by it!

“When you pass through the waters”

Deep the waves may be and cold,

But Jehovah is our refuge,

And His promise is our hold;

For the Lord Himself has said it,

He, the faithful God and true:

“When you come to the waters

You will not go down, BUT THROUGH.”

Seas of sorrow, seas of trial,

Bitter anguish, fiercest pain,

Rolling surges of temptation

Sweeping over heart and brain—

They will never overflow us

For we know His word is true;

All His waves and all His billows

He will lead us safely THROUGH.

Threatening breakers of destruction,

Doubt’s insidious undertow,

Will not sink us, will not drag us

Out to ocean depths of woe;

For His promise will sustain us,

Praise the Lord, whose Word is true!

We will not go down, or under,

For He says, “You will pass THROUGH.”

Charging My Battery :)

Wed, 04 Jan 2012 19:33:00 GMT

Update: This past Friday, I had my second stellate ganglion block at the OHSU CPC. And to my disappointment, the procedure supposedly didn’t “block” again. My doctor thought maybe the stellate ganglion nerve bundle is lower than normal which is why they can’t get effective blocks… But here’s some good news! 🙂 I actually had […]

Reflections on this past year 2011

Sat, 31 Dec 2011 22:34:00 GMT

A couple months after my surgery, I developed a hypertrophic scar which was like a rock in my foot! Thinking that was the cause of my foot pain, I decided to have a cortisone shot directly in the scar to soften it. So on March 11, 2011, I had that done, but to my great surprise, it made everything worse! My foot became numb and felt dead. I didn’t know what was happening! That’s when I had to use crutches full-time. By God’s amazing grace, my dermatologists figured out what was wrong. They told me I may have reflex sympathetic dystrophy. My pediatrician confirmed it and immediately referred me to the OHSU pain center on the South Waterfront. Left untreated, RSD can spread or worsen, so a medical board at the Comprehensive Pain Center quickly reviewed my case and got me in the following week!

My pain management doctor’s name is Dr. Brett Stacey who is also the chief medical director of the CPC. He evaluated me and diagnosed me with Complex Regional Pain Syndrome which is the new name of RSD. He’s pretty sure this all started when I had that foot surgery. Life became a whirlwind after that appointment! Right away, I had to start taking this anti-convulsant drug called Gabapentin which is supposed to calm my nerves. Two days later, I saw a pain psychologist and a physical therapist at OHSU. In April, I had my first lumbar sympathetic block, but sadly, it didn’t give much pain relief. Those were hard months. Being a senior in high school, I didn’t get to really have a “normal” senior year. I had to pretty much drop out of some of my high school classes because the pain was so bad and I was dealing with some drug side effects. I even had to graduate from high school on crutches which was another frustration. I had to continually surrender to God and wanted to let this strengthen my faith, not tear it down. I never wanted to grow angry and bitter at God.

Throughout these past months, I have been encouraged and refreshed by following the story of baby Bowen, the son of Matt Hammitt (of the Christian band Sanctus Real) and his wife Sarah. Bowen was born with Hypoplastic Left Heart Syndrome and had to have numerous surgeries to repair his heart. This was a great trial for the Hammitt family, but what Matt Hammitt said struck me. Instead of being bitter, he said he chooses to “trade in his pain for purpose.” When I heard that, I was, like, “Wow. That’s what I want to do!” So, on this journey of living with chronic pain, I choose to trade in my pain for PURPOSE. It’s definitely not easy living with constant nerve pain, but I’m so grateful God gives grace for each day. He will get me through this, no matter how long it lasts! “And we know that for those who love God all things work together for good, for those who are called according to his purpose” (Romans 8:28). The following verse is kind of like my life verse: “…it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be honored in my body , whether by life or by death. For to me to live is christ, and to die is gain” (Philippians 1:20, 21 emphasis added ).

Pain With Purpose

J-tube update and a prayer request for my uncle ❤️

Letter to my GI specialist 💚

J-tube update

"God is always doing more than we know, working toward a good we will one day rejoice in."

-Lysa Terkeurst

Please pray ❤️

Reflections on the year 2025 ❤️✨

Lucy turned 5 (and a sale!) ❤️

Catch 22

October prayer request

Thank you! (+ a prayer request)

"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness."

James 1:2-3

Praises & Prayer Requests

"The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness."

Lamentations 3:22-23

15 Years

"We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.."

Romans 5:3-4

The latest.. (a mix of wonderful news and rough news)

"Weeping may tarry for the night, but joy comes with the morning."

-Psalm 30:5-

Mito crash update (with additional prayer requests)

I, the LORD your God, hold your right hand; it is I who say to you, "Fear not, I am the one who helps you."

Isaiah 41:13

May update (and sneak peek!)

How unspeakably wonderful to know that all our concerns are held in hands that bled for us.

-John Newton

New Struggles

"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world."

-John 16:33- ﻿

More difficult news..

February update ❤️

Difficult trial 🥺

Progressive weakness 💔

"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken."

Psalm 62:2

Rough Road

“Be still, and know that I am God.”

-Psalm 46:10

﻿

October update

More Hard News

"Weeping may tarry for the night,

but joy comes with the morning."

Psalm 30:5

Hard News

"Share in suffering as a good soldier

of Christ Jesus."

2 Timothy 2:3

﻿

July Update

Cast your burden on the Lord, and he will sustain you.

-Psalm 55:22-

Leaning on God ❤️

Part 4 ❤️

| Part 4 |

Part 3 ❤️

| Part 3 |

Part 2 ❤️

| Part 2 |

Part 1 ❤️

Urgent prayer request ❤️

Reflections on the year 2023

"Let us know; let us press on to know the LORD; his going out is sure as the dawn; he will come to us as the showers, as the spring rains that water the earth."

Hosea 6:3

Please pray ❤️

"This hard place in which you, perhaps, find yourself, is the very place in which God is giving you opportunity to look only to Him."

﻿ Elisabeth Elliot

More tests..

"I wait for the Lord,

my soul waits, and in his word I hope."

Psalm 130:5

A weary road

"For I will satisfy the weary soul, and every languishing soul I will replenish."

Jeremiah 31:25

The latest issues..

"The Lord upholds all who are falling and raises up all who are bowed down."

Psalm 145:14

-John 16:33-

Elisabeth Elliot