Blood tests

Kerissa • July 14, 2016

Oscar Wilde wrote: “In this world there are only two tragedies. One is not getting what one wants, and the other is getting it.” To rephrase his thought, I suggest there are likewise only two joys. One is having God answer all your prayers; the other is not receiving the answer to all your prayers. I believe this because I have found that God knows my needs infinitely better than I know them. And He is utterly dependable, no matter which direction our circumstances take us. ~Joni Eareckson Tada

Hey friends,

Thank you for always checking in and reading my blog. It means a lot to me as I continue on this journey!

Can’t remember if I ever mentioned this, but I’ve been dealing with daily hives/itching for more than a year now. My eosinophils (a type of white blood cell that increases with inflammation/allergic reactions) have also been getting pretty high. My hematologist said we’ll keep monitoring this and run more tests if they get to a certain level.

But the hives/itching makes me so miserable, so in April or so of this year, I finally went to see an allergy/immunology doctor. She suspects I have a mast cell disorder, and she even mentioned that she sees this often with EDS and mito. I’m thankful for answers, but I do wish it wasn’t another condition to add to my ever growing list. I had lots of food allergy testing which shows that I react to pretty much all the foods I can eat (basically, eggs, dairy, oats, soy, etc.). All those foods are the only things I can really tolerate with my GI dysmotility. :/ These food reactions are related to my mast cells which are too hyper. So I was put on a mast cell stabilizer medication—it helped immensely! But only for a little while. Either its effectiveness decreased or the mast cell disorder has worsened…but I can’t increase the med dosage at this point because my insurance doesn’t cover compounded meds. So now I’m to trial some other things in addition to what I’m currently taking.

I’m blessed to have a knowledgeable doctor! She knows a lot about how mast cells are related to EDS and mito. I’d explain it here, but I don’t fully understand it myself. lol

I saw my new PCP at OHSU recently, and she is amazing! She exceeded my expectations and is so kind and compassionate. She has several pediatric patients with mito! She’s going to try to make my “coordination of care” even better. I see her again the beginning of August.

This past Monday, I saw my orthopaedic hip surgeon for follow-up. She discussed the surgery in more detail and drew us a diagram of the hip socket and labrum. She explained about the risks/potential complications with surgery and wrote down the plan for rehabilitation. I have Pre-op on July 29th, and I’ll be seeing the peri-operative medicine dr. instead of the nurse practitioner as originally scheduled since my case is so complex. After surgery, I’ll be sent home with a machine called Continuous Passive Motion. This machine will move my leg passively to prevent scar tissue formation in the joint and so that my hip/leg doesn’t get stiff. I’ll have to use it for 4-6 hours a day. :O

This past Sunday night, I had a bad episode of vomiting. That’s what happened the two weeks before I became septic in March. Praying another central line infection isn’t brewing. I saw my GI dr. today, and he ordered blood cultures to be drawn when my home health nurse comes tomorrow to draw my regular labs. My liver function lab tests have been increasing as well, and my platelets are the lowest they’ve ever been. Both can indicate infection, so we’ll see if the cultures grow.. Even if infection is ruled out, my GI dr. said something is going on regardless. I haven’t been feeling my normal this week.

P.S. My family and I had a wonderful time at the coast last week! We played lots of games, watched movies together, and put together a 750-piece Beauty and the Beast puzzle—the beach house was so nice! We also went to the beach a couple of times. And my physical therapist was so happy to hear that I tried walking a little on the sand, despite the muscle weakness and fatigue. My muscles got tired so fast, but it was nice to stand on the beach!!

me and my older sister

sunset in Pacific City

me and my IV backpack

From left to right: my older brother, me, my younger brother, and my older sister<3

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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. 💚