Reflections on this past year 2013
Kerissa • January 1, 2014
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
, I came down with a 103.3 fever that wouldn’t break, even after taking Advil and Aleve that morning and the night before.
I took my first
ambulance ride to the ER after the paramedics came to my house. I remember hearing one paramedic saying, “She’s burning up.” And still another told me, “I’m so glad your dad called us.”
My heart rate got very high (in the 150 bpm range)—the doctors had to quickly give me about 4 liters of IV fluids before things started calming down. One resident dr. told me, “You’re a troublemaker!”
My labwork came back all out of whack, and I tested positive for Influenza B. The flu hit my mom and sister as well, but it was the hardest on me because of the mitochondrial disease..
The flu caused a terrible CRPS flare-up
—the pain got so unbearable, and my feet swelled up.
Once I recovered from that ordeal, I had my first
bilateral lumbar sympathetic block to calm the pain down. After doing LSBs for 25 years, Dr. S told me that was his first
time performing a bilateral one!
In April
, my parents, sister, and I traveled to Cincinnati, Ohio for the first
time where I saw Genetics, Neurology, and Pain at Cincinnati Children’s Hospital Medical Center!
We spent a week there, and this is when the doctors really started suspecting mitochondrial disease.
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Met this precious little guy at the RMH! He was getting ready to have a bone marrow transplant! I know I shared this pic before, but it’s one of my favorites! |
On May
21st, my 90 year old grandma (my dad’s mom) passed away suddenly due to a suspected pulmonary embolism. :'( That was so hard, and it was the first
time my siblings and I really experienced the death of a grandparent (my oldest brother was only 6 months when our grandpa passed away from a heart attack).
A lot happened in July. My 89 year old grandpa (my mom’s dad) passed away from kidney failure. :'( We weren’t expecting that, also, because he was given up to 6 months to live. As you can imagine, that was so difficult for all of us to go through two close family deaths in not even two months. We all miss our grandparents terribly.
I’m not sure if it was because of the stress, but that month, I began experiencing chronic GI issues for the first
time (which are still going on today).
In July as well, my geneticist in Cincy ordered nuclear mitochondrial exome sequencing. That was my first
extensive genetic test which took about 6 weeks to be completed.
But before the test could get started, our insurance denied the exome sequencing because it was out-of-network. The lab had to go through the appeals process which took an incredibly long 5 weeks! But thanks be to God and the amazing laboratory Courtagen Diagnostics, the testing did get appealed! And our insurance agreed to cover the whole cost!
In August
, a caring and thoughtful family in our church let my family use their beautiful beach house for a whole week!!! That trip to the coast was much needed and such a blessing.
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| Our view from the beach house. |
Soon after my 21st birthday in October
, I had a second
lumbar puncture (spinal tap) to check certain lab values at the request of Dr. H, a mitochondrial specialist in San Diego. I’m still currently trying to get in to see him, but this again may take several months..
Beginning in November
, I started having difficulty swallowing (but not from a sore throat) and severe esophagus pain. Eating brought extreme pain, and for more than a week, it felt like food was stuck in my esophagus. For the second
time this year, I had to take another trip to the ER. The doctors had me stay overnight in the observation unit as they tried getting to the bottom of this. I had a test done called an esophagram, but this revealed nothing. They wanted me to get an upper scope of my GI tract, but they referred all of this to my GI specialist here in Oregon and the motility dr. in Cincinnati.
December
1st-14th, my parents and I traveled a second
time to Cincinnati Children’s Hospital Medical Center. I was admitted to the GI unit of the hospital for tests that could only be done inpatient.
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| All of this was for the GI manometry testing! |
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| And this is what it looked like on the computer screen. |
I also had a lot of outpatient tests/appointments with cardiology, orthopaedics, pulmonology, genetics, and neurology. Based on my genetic results, the doctors also think that I have a rare genetic neuromuscular disorder called Congenital Myasthenic Syndrome. This is on top of the mitochondrial disease.. They already started me on a cholinesterase inhibitor drug to slow the progression.
This has been a tough year for all of us, but your prayers/support and the Lord’s grace has sustained us through it all!
I don’t know what 2014 will bring….maybe it will be an easier year….or maybe there will be new trials and tests. But this I know 100%: my Lord and Savior is always always good, sovereign, steadfast, and faithful!
“Beloved, do not be surprised at the fiery trial when it 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.”
I Peter 4:12-13
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 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… ❤️
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. ❤️
