Progressive weakness 💔

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. 🥺  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. 🥹  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. 🥺


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.. 😔


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! ❤️🎄

J-tube update and a prayer request for my uncle ❤️

By Kerissa Lee • April 16, 2026
Hi, friends, I just wanted to write an update on what’s happened since my last post. Sadly, the 2 different tube changes haven’t helped, and there’s still so much leaking around the tube. 🙁 The abdominal pain was decreasing each day, but for some reason, it has ramped up again and has been steadily getting worse the last several days. The pain is sharp and throbbing—it also hurts to use my abdominal muscles. I saw my primary care dr. this past Friday, and he ordered an urgent CT scan. I had that done this past Monday, and the scan shows that the balloon on the tube is lodged in my abdominal wall (it’s called buried bumper syndrome). 😥 So painful, but I’m thankful for answers! I actually had this issue many years ago, and usually, changing the tube size helps. But we’ve already tried 2 different tube sizes in March which hasn’t helped. I don’t know if the tract got damaged or what.. My PCP messaged the surgery team twice now, but they’re not responding still. Ever since my general surgeon left OHSU 2ish years ago to practice in New Orleans, it hasn’t been a good transfer to a different team. 😢 In addition, the CT scan also revealed that I have ground glass opacities in my left lung, so I have to go through work-up for that as well to figure out the cause.. Aside from these latest issues, I’m praising God that my mitochondrial disease has been stable still!! So thankful for God’s grace and faithfulness. The day I got my CT results, I read this excerpt below from one of Joni Eareckson Tada’s daily devotionals, and it was like the Lord was speaking right to my heart. I hope it’s an encouragement to you. ❤️ “Present pain and afflictions tend to heighten future joy. When is peace the sweetest? Right after the conflict. When does a cold drink taste best? When you’ve become very thirsty. When do you appreciate rest the most? After hours of hard labor. When is joyful company most pleasant? After enduring long days of loneliness. The truth is, our recollection of past sufferings may one day enhance the bliss of heaven. Eternity with the Lord will be so much more heavenly to those of us whose faith has been tested, battered, and tried, time and again.” -Joni Eareckson Tada One more thing.. I’d really love prayers for my uncle (my dad’s older brother). He’s been very sick in the neuro ICU with serious issues. First pneumonia, then bacteria in his spine which later broke his back. He had a major spinal surgery but still can’t move his legs. 🥺 On top of that, his kidneys started failing, so he had to be placed on continuous dialysis. He also had to be put on a ventilator due to fluid in his lungs. Then, he still couldn’t breathe well, so he had to get a tracheostomy tube placed in his neck. 🥺 Despite all this, he and his family are so strong and trusting the Lord which is a huge testimony to all of us and to the ICU. Could you please pray for peace, strength, and healing over his body? I know he and his family would be so grateful for your prayers. 💙 P.S. I wish I could show you my foster nephew’s sweet face in this photo from Easter Sunday! He is now 9 months old—the most precious and adorable little boy!! Our lives are so much sweeter with him in it. 🥹

Letter to my GI specialist 💚

By Kerissa Lee • March 31, 2026
Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa

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