Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. π This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. π₯Ί I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. π The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). π This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! π I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. β€οΈ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul
Dear friends, I shared in my last post how excited I was that my j-tube was going to be switched back to the low-profile version at an appointment on June 23rd. Well, that sadly didn’t happen because my surgeon wasn’t comfortable with how much pain, swelling, and bleeding I was still experiencing. It’s a long story and hard to understand unless you’re very familiar with j-tubes, but basically, she said switching wouldn’t be a good idea, and we could try again in a few months. Unfortunately, things have only gotten worse, and no matter how many times I adjust this j-tube, the balloon for some reason keeps getting lodged into my abdominal muscle—it causes horrible pain, and not even my pain medication helps! I almost went to the ED the other day…that’s how bad the pain has been. π₯Ί After thinking and praying about it a lot, I finally decided to ask my surgeon if I could have my j-tube completely removed since she still can’t find the cause of why the balloon keeps getting stuck. It’s been nearly 12 years using one, so this is a big deal! I just feel like the tract is somehow failing since the surgery was so long ago. Unfortunately, it can’t be done until the last week of July since it’s a policy of the surgery clinic to not use the tube for 2 whole weeks before completely removing (don’t know the exact day of removal yet). I can’t believe it’s almost the end of an era! The Lord has been so faithful and given me strength to endure over a decade of having a constant tube sticking out of my abdomen. Some days were truly so rough—remember I had that huge abdominal abscess back in 2023 and had to have bedside abdominal surgery and drains placed in the ED? I couldn’t have done this without God’s help. π₯Ή You might be wondering, “What happens if I get worse again or have more mitochondrial flares?” Thankfully, I still have my port, so if I was hospitalized many times again, I would be given IV medications and infusions. And, if I did possibly need a tube again, I could have a g-tube placed in my stomach which is a much smaller surgery than a j-tube placed in the small intestine. We’ll cross that bridge if we come to it! In other news, I’ve been continuing to do so very well mitochondrial-wise, and God has been gracious and merciful! I feel undeserving of this huge gift of health when so many others I know are struggling (please keep praying for my uncle who’s been in the ICU since March)!! π’π Aside from all these tube issues, life lately has been so full, but in the best way. I was able to study and complete the training to receive my Pediatric First Aid/CPR/AED certification! I’ve been applying to different nanny jobs and even had my first interview last week! It would simply be amazing if it would work out to have a part-time nanny job for 1-2 days per week when I don’t babysit my foster nephew. Speaking of my sweet foster nephew, he recently turned 1!! He had a “One-in-the-Sun” 1st birthday party which was super cute and special! It’s been so neat to see God’s hand on his life from birth til now.. Considering he was in the hospital for a whole month after he was born, he’s truly come soo far, and life is very sweet with him in it! π₯Ήπ On top of all that, I was finally able to take the DMV driver’s test, and guess what?! I PASSED!!! π₯° So so happy and thankful I was able to complete this simple rite-of-passage that many people half my age often take for granted. I constantly think how huge of a gift it is to simply be physically well enough to drive around town. π₯Ή After reading this, you might think I'm all healed! And while I am feeling so much better than before, I just wanted to share that I still do experience mitochondrial symptoms every day: spasticity (it often wakes me up during the night because my back muscles tighten/spasm a lot), central vertigo, minipolymyoclonus which causes muscle jerking and tremors in my hands, chronic pain, insomnia, and many other things. But, I'm so thankful to God for different medications I'm on to help these ongoing issues. There are good days and bad days, but I just look back and see how much worse I used to be! I don't know how long this stable period will last, but I continually thank and praise God for it! π₯Ή ο»Ώ
Hello, friends, I just wanted to share a blog update and thank you all so much for your prayers these last several weeks. β€οΈ They help me to persevere! I previously posted that the interventional radiology team said my old port needs to be removed because of the site being too exposed from skin breakdown. Well, on May 19th, I had a virtual appointment with the IR nurse practitioner. To my great disappointment, she didn’t want me to get a new port and said I need a central line instead. I tried explaining to her that all my previous central lines always got infected and caused sepsis, but she still wouldn’t budge. π I left that appointment and cried. I kept reciting 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”). I knew that God was in control, but I was still so sad.. The next day was my port removal surgery and central line placement. Many of you already know this from FB/IG, but I wanted to re-share the following here on my blog as well! When I met the attending physician who was going to do the surgery, I told him my whole story and asked if he could please consider placing a new port instead of a central line. And do you want to hear something soo amazing?! He nonchalantly said, “I can place a port!” I was so shocked! π₯Ή I immediately felt God’s mercy and kindness in sovereignly arranging this specific doctor to be the one to care for me. Both surgeries were back to back, and everything was much more difficult than he was expecting! In his chart notes, he stated that it took “more than twice the usual time, an unusually large amount of materials, and required a very high level of technical expertise and skill.” It was a great challenge removing my old port because of scar tissue and because it was so embedded to my chest wall. π₯ He had to yank, pull, and manipulate a ton—all of that caused a huge bruise to form over my chest. When he used fluoroscopy (moving x-ray), he also saw on x-ray that there’s a 7 mm cylindrical foreign body in my chest (pictured below). He assumes it’s a retained port fragment from an old port surgery that happened years ago. We’re just going to leave it there.. π I was awake the whole time because none of the sedation meds worked! I’ve unfortunately had more than 20+ surgeries/procedures, so my body has become immune to certain sedation meds. The team recommends that I have much stronger anesthesia next time.. So thankful that the Lord helped me through this painful process! In other news, I finally get to have this temporary, bulky j-tube replaced with a low-profile one on the 23rd! My GI surgeon was hoping that the temporary tube would give the site a break and help heal all the inflammation (which was caused by buried bumper syndrome when the balloon got stuck in the abdominal wall 2 months ago). And I think that did the trick because the site is no longer leaking a ton! π₯² Praying that switching back to the low-profile tube doesn’t cause an uptick in pain/leaking.. Last week, I had a bit of a scare when blood started coming out of the j-tube stoma (hole) for several days. We don’t exactly know what caused the bleeding, but thankfully, it stopped! If it does happen again, the GI nurse practitioner ordered an abdominal ultrasound.. If you made it this far, I’d so appreciate continued prayers for my sleep. Still experiencing bad insomnia as a side effect from an important medication that I need. It’s so hard when I can’t fall asleep until after 5:30-6:30 AM every single day. π I don’t know what else to do except take each day as it comes and lean on the Lord for endurance. π Aside from this, still so grateful to God that I’m doing really well mitochondrial-wise! For those who may not remember, my naturopathic doctor at the OHSU pain center started me on 2 very strong antioxidants last year: liposomal glutathione and n-acetyl cysteine. When I started taking both regularly for several months, the neck weakness resolved and the overall muscle fatigue improved a lot. By God’s grace, I’ve physically been very stable which is a huge answer to prayer!! π₯Ή P.S. It’s taken me a while to share this, but a few months ago, I added 11 new card designs to my shop. Here are some of my faves. βΊοΈ I’ve sadly run into another unfortunate predicament with the e-commerce site I sell on, but I’ll try to share that story another time.. π ο»Ώ
Lucy and I hope you all had a wonderful Christmas! πβ€οΈ 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. π₯° 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!! βΊοΈ 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. β¨ 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!! π€ Stay tuned for my annual “reflections” blog post… β€οΈ
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. β€οΈ 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. π₯Ή 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. π’ 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. π 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. β€οΈ ο»Ώ
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. π 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. π’ 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. β€οΈ
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
“Be still, and know that I am God.” -Psalm 46:10 ο»Ώ
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
"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." ο»Ώ Elisabeth Elliot
"I wait for the Lord, my soul waits, and in his word I hope." Psalm 130:5
"For I will satisfy the weary soul, and every languishing soul I will replenish." Jeremiah 31:25
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 […]
Hi, friends, I’m sorry it’s taken me a while to write a Seattle update on my neuro appointment. More than a week ago, our internet line accidentally got cut during construction—you never realize how much you use the internet until you don’t have it!! π Regarding the “new” symptoms I’ve been experiencing since April (migraines […]
Hi, friends, It’s been a little while since I shared a medical update. To recap, I’ve been experiencing buzzing in my right ear, and I lost the ability for my right eyeball to look to the right. I’ve also been dealing with nystagmus and migraines about every other day (sometimes every day). My pain doctor […]
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. β€οΈ For […]
Hi, friends. π 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. π 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 […]
Hi friends, *If you’re wondering why there are random bullet points, my website had an update, and when I press the “enter” button to make new paragraphs, it doesn’t seem to work. So using bullet points is the only thing I could think of to make spaces in between paragraphs. π
Anywho, I just wanted […]
Hi, friends, Wow, it’s been a while! I just wanted to check in and post a health update. π 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 […]
Hi friends, I just had some prayer requests again. It’s been almost 3 weeks since I came home from the hospital, but I’m still really weak. So in addition to physical therapy, my doctor referred me to occupational hand therapy at OHSU as it’s so hard to open/hold things, hand letter, etc. (the above […]
Friends, could you please pray for me? After spending 10 long days in the hospital, I was finally able to go home on Friday. But it’s been very hard—I’m extremely weak all over, and I’ve also been having these horrible episodes where my heart rate shoots up, I feel hot and cold at the […]
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 […]
* I shared this on Facebook and Instagram but wanted to post it on my blog as well since some of you here aren’t on social media. π * I originally had the background of this in blue, but then I remembered that today starts Mitochondrial Disease Awareness Week 2019! So I of course had […]
Hey friends, First of all, I’m sorry it’s been so long again since I last blogged. π Last month, I had my mitochondrial appointment in San Diego—traveling and the trip in general was hard physically (more details below), so when we got home, I had terrible nystagmus and other rough mito symptoms. And then, […]
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 […]
Hey friends, It’s been more than a month since I last posted….and sometimes, no news DOESN’T mean good news. π This will be extremely long, but I want to document everything to remember….so here goes! About 24 hours after my hip labral repair surgery on August 10th, I went into septic shock (there […]
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 […]
“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, I’m so sorry that I haven’t blogged since October!! π November was a pretty busy […]
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 […]
Hey friends, It’s been over 3 weeks since I last posted, and again, there’s so much to tell and to process. π 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 […]
Hey friends, Just a short update. Since the day after Thanksgiving, I’ve been sick with low-grade fevers, a painful sore throat, swollen glands, a barking cough day and night, and terrible fatigue. The doctor thought at first that it was a bad virus, but now he believes I have a bacterial infection in my […]
“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 […]
“Joy is not necessarily the absence of suffering. It is the presence of God.” ~Sam Storms Last week, I threw up a ton again, and it never gets easier. π We don’t know what caused it this time…but my GI dr. thinks these vomiting episodes are from my gastroparesis/intestinal dysmotility. My feet […]
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 […]
Hi everyone, Just wanted to let you know that things medically are going ok with me, but my grandma (my only remaining grandparent) is not doing well at all and is in the last days of her life due to congestive heart failure. π It’s been so hard to see her decline…the hospice nurse thought […]
Hey friends, My liver biopsy last Friday went very well! Thank you so much for praying! The doctors were able to obtain two specimens without complication. After the biopsy, though, my kidneys took a hit that weekend, and I suddenly gained 4 lbs. of fluid. π We weren’t sure what was going on and if […]
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 […]
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 […]
Hey friends, I’d appreciate your continued prayers! My small intestine is in bad shape. Still can’t tolerate j-tube feeds or solid food orally. And I’m now getting distended with just liquids… π The dysmotility in my small intestine has gotten so much worse. Mitochondrial disease is horrible! I’m being followed very closely by my GI […]
It’s so good to be back in Oregon!! π Missed my siblings so much! Last week alone, I had 8 appointments at CCHMC—that was crazy busy! But these past weeks were incredible, and I’m again so amazed at how thorough and caring the doctors/nurses are at Cincinnati Children’s Hospital Medical Center! I’m so blessed to […]
Hi, everyone! This morning, I saw the mitochondrial disease specialist and genetic counselor in the Human Genetics department at Cincinnati Children’s. We went over my history/new symptoms and discussed my nuclear mitochondrial exome sequencing results. For those new to my blog, I had my nuclear mitochondrial genes sequenced through a lab called Courtagen Diagnostics […]
Yesterday: Saw cardiology and orthopedics for my POTS disorder and back pain. Will update some other day about how these appointments went. π 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 […]
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?). π She also ordered another diagnostic test called […]
Had a great day yesterday!! π So many of you have been so supportive and encouraging to me! Thank you for lifting me up in prayer. <3 That means so much to me. My pain dr. showed no sign of discouragement yesterday! He was very cheery and compassionate. π We discussed my MRIs and one […]
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 […]
