Progressive weakness πŸ’”

Kerissa Lee • December 13, 2024

"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken."

Psalm 62:2




Hi, friends,


It’s been more than a month since I last posted, and I’m sad to say that my symptoms have gotten much worse.


If you missed the update, this new weakness and pain put a lot of stress on my body, to the point that I went into another rough mitochondrial crash. The week before Thanksgiving, I was directly admitted to the hospital for 7 days due to nausea, vomiting, increased pain, nystagmus, very droopy eyelids, and more..


My “mito crash” symptoms thankfully resolved after receiving continuous IV dextrose and IV levocarnitine. The hospitalist (one of the most compassionate doctors I’ve ever met) also ordered the IV steroid dexamethasone to see if it would help this unusual muscle weakness in my neck, and it did! That was an answer to prayer, but, several days after getting discharged, my neck weakness started worsening again. 😭  We’re not sure if it’s due to the steroid wearing off?


It’s now difficult to lift my head off the pillow when lying down. I truly took for granted how vital the neck muscles are for any type of movement. πŸ₯Ί  I so miss being at my “normal” baseline and doing basic things like grocery shopping or even vacuuming. I also really miss creating hand lettered art like my old Christmas piece above from 2 years ago. 😒  Are you familiar with the “plank” exercise where you try to lift your abdomen off the ground horizontally as long as possible? Well, I’ve been in so much pain because it feels like I’m always doing a “plank” exercise but with my neck—it constantly aches and burns. 😭


3 of my doctors have all tried to refer me to neuromuscular neurology locally for this new weakness, but the referrals have been rejected each time. No one wants to see me due to my mitochondrial depletion diagnosis. 😒  So I emailed my neuromuscular specialist up at the University of Washington Medical Center and told him all about what’s happened. By God’s grace, my doctor moved up my appointment with him from March ‘25 to January ‘25 which is so caring and compassionate of him, especially since I haven’t seen him in more than 2 years. πŸ₯Ή  Even more amazing is that he completed a fellowship in neuro-immunology at the NIH and specializes in inflammatory muscle disorders. His expertise in this area is an answer to prayer since my immune system seems to be attacking my muscles (based on a lab result that came back showing antinuclear antibodies in my blood)..


It’s been an incredibly difficult and scary time, and it’s even harder because all this is happening during the holidays. I often feel so alone, having to be bed/recliner-bound and miss out on so much. πŸ₯Ί


But, despite all this, I’ve seen firsthand how God is still on the throne and is quietly working behind the scenes. Deuteronomy 31:6 and 8 has been an encouragement to me where it says that God goes with me and before me. This path is so painful, but I’m trying to remind myself that it’s not without its purpose. I may not know why this is happening right now, but I do know God is with me and will never leave me nor forsake me. ❀️


My primary care dr. is out on paternity leave until next month, so I saw his colleague yesterday. She was so kind and also very knowledgeable. She ordered the same steroid I received in the hospital to see if it will help this worsening neck weakness. If it is beneficial, she said that’s a great diagnostic tool because it tells us there IS something inflammatory going on in my body to cause this weakness..


Could you please pray that the steroids will help and also hold me over till I see the neurologist next month? If it doesn’t help, she said I may have to get directly admitted again.. πŸ˜”


Could you also pray that my neurologist will be able to swiftly diagnose the issue and come up with a plan for treatment?


Pray that I (and my family) will trust the Lord through all this uncertainty and keep an eternal perspective. It’s so hard not to worry, but I’m so grateful for all of your loving prayers and support during this trial, friends.   Merry Christmas! β€οΈπŸŽ„

Surgery Update 😊

By Kerissa Lee • August 21, 2026
Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! πŸ’š All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! πŸ₯Ή My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! πŸ₯° I can’t wait until I can show you his face—he’s so adorable. 🩡 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it.. ο»Ώ

August 6th Surgery Prayer Requests πŸ’š

By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1

Another surgery 😞

By Kerissa Lee • July 25, 2026
Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. πŸ’š This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. πŸ₯Ί I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❀️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul