Hard News

Kerissa Lee • August 24, 2024

"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. ❤️

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. ❤️