5 years.

Kerissa • June 1, 2016

Well, guys, I beat my record for the most appointments in one month. I ended up having a total of 19 appointments this month, not 16 like I thought it’d be.. This month wore me out..

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.

The doctor is very kind and caring. He’s had mitochondrial disease patients, but he said they were never as bad as me. He spoke with the head of the OHSU Internal Medicine board to see if a new primary care physician can be found for me who knows more about mito and can potentially coordinate all of my care better. My current primary care doctor is great and is always helpful in referring me to other specialists, but she doesn’t know enough about my conditions since they’re so rare. The head of the Internal Medicine board suggested I see this doctor who is board-certified in both pediatrics and internal medicine. That means she’s a pediatrician and an internist—she works at Doernbecher Children’s Hospital and OHSU! She knows about mito which is a plus. Her schedule is booked out so I can’t see her until July or after.

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.

Last Friday, I received my final IV iron infusion. My blood counts were slowly creeping up, but unfortunately, they have dropped and I’m still anemic.We’ll see what my levels are this week..

This Thursday, I have a follow-up with my nephrologist to discuss the worsening hypomagnesemia. Still dealing with disabling muscle cramps from the low magnesium. And right after that appointment, I have my 19th MRI for the suspected hip labral tear.

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

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J-tube update

By Kerissa Lee • March 17, 2026

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

Please pray ❤️

By Kerissa Lee • March 7, 2026

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 ❤️✨

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. 💚