Part 2- the next part of my journey (Mito Awareness Day 4)

Kerissa • September 19, 2013

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.

Still waiting in the ER, I looked out my door and down the hall where I saw two, tall gentlemen walking my way! I couldn’t believe my eyes! My pastor, an elder, and two staff members from my church came to visit me, and it did my spirit good to see them! My pastor gave me this book filled with God’s promises, and he shared this verse with me: “Fear not, little flock, for it is your Father’s good pleasure to give you the kingdom” (Luke 12:32). Right then, I felt such peace and knew that, with His help, I could take this on!

That night, I got admitted to 5A. The hospital was full that day, so I had to share a room with another person. After I got settled in, a respiratory therapist stopped by. The neuro team put in an order to have my lung function checked in case I did have Myasthenia Gravis. I had to breath in as hard as I could with this contraption and push a button at the same time. And guess what, I passed with flying colors.

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.

One of the best things about this hospital stay was meeting Brian, a medical student. Not only did he answer all my questions and explain what could be going on, he was like a big brother to me. He tried to visit me every day, even after finishing a difficult final for his neurology rotation. I found out then that he goes to the same church as my brother! I’ve been blessed to still keep in touch with him and his wife. Brian graduated from med school back in June! So happy for him.

Next up: Part 3- the time I had a 2 1/2 hour EMG/NCV study and my first spinal tap..

P.S. It’s been two weeks, and I still haven’t gotten my sleep study results… The doctor hasn’t started interpreting the data yet, so the receptionist is going to send him a message.. In other news, next week I will very possibly get the mito exome sequencing results!!

< Older Post Newer Post >

Reflections on the year 2025 ❤️✨

By Kerissa Lee • January 3, 2026

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!) ❤️

By Kerissa Lee • December 28, 2025

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

By Kerissa Lee • November 17, 2025

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. ❤️