Please pray ❤️

Kerissa Lee • December 11, 2023

"This hard place in which you, perhaps, find yourself, is the very place in which God is giving you opportunity to look only to Him."

Elisabeth Elliot



Hi, friends,


I wanted to share an update on the last few weeks. Thank you so much for continuing to pray for me—I’ve been really needing each and every prayer lately. ❤️


Sadly, my legs have still been aching terribly all day every day, and it gets so overwhelming to bear this deep aching pain on top of my regular small fiber neuropathy. 🥺 It’s very difficult to focus because the pain is unrelenting, and my pain meds only bring it down maybe 1-2 points. There have been a lot of tears in private, even writing this. :’( We are still trying to figure out what’s causing the leg pain—I have a few big appointments with specialists this month and next.


Sleep is rough and restless with the pain, and on top of that, my PICC line continues to itch terribly every day and night from the mast cell disorder (MCAS). I have to often get ice in the middle of the night more than once because that’s the only thing that helps the itching to calm down. It’s just hard to have a sterile adhesive dressing over my PICC line and not be able to scratch underneath it (since it has to stay extremely sterile). 😭  I have a second opinion with a specialist this week for the MCAS.


Last week, I had a one year follow-up with my neuro-ophthalmologist to check up on the chronic progressive external ophthalmoplegia (CPEO) caused by my mitochondrial DNA depletion. It’s always a little disheartening when my doctor examines my eyes because it reminds me that I can’t look different directions like healthy people. This eye muscle paralysis makes it a challenge to see certain things (normally, one would just move their eyeballs a specific direction, but I can’t). I thank God that I still have my eyesight and that most people can’t tell I have CPEO. There’s a mitochondrial disorder called Leber’s Hereditary Optic Neuropathy that causes blindness, and I’m so thankful I don’t have that. I hope sharing all this is bringing awareness to how bad mitochondrial diseases are. 😢


I also had an appointment with the OHSU wound care center last week for the raw, painful area near my j-tube (caused by that abscess in August). I’ve been waiting numerous weeks to see them! They were very compassionate. The specialist prescribed something I’ve never tried called a “liquid wound dressing.” I see them again in 2 weeks, and if there’s still no wound healing, he’ll try some other things.


On top of all the above, I started experiencing joint pain in some of the knuckles of my right hand. I wish it was my left hand instead because I use my right to hand letter. We’re wondering if this new symptom is possibly connected with the leg pain. So I have to get some tests done for that. When this started, I kept thinking of Joni Eareckson Tada (an amazing example to me!). If she can paint so beautifully while being a quadriplegic, I can surely create lettering art with hand pain. 🥹


I mentioned this already, but it truly has been overwhelming to deal with all that’s going on, especially during this Christmas season. 😢  When the pain is so bad and I can’t sleep, I think of the lament Psalms and keep crying out to God, “How long, O Lord?” I may have missed some, but I counted how many “how long?” questions to God there are in Psalms. There are sixteen! It’s a reminder to me that the Lord can take all our cries and questions. It’s not too much for Him. He does not forget the cry of the afflicted (as Psalm 9:12 says). Isn’t that so encouraging?


Could you please pray that I will keep trusting in God’s plan and that my faith will remain steadfast in spite of all that’s happening? I love you and am so thankful for you, dear friends. ❤️ Merry Christmas. 🎄


| And every prayer we prayed in desperation

The songs of faith we sang through doubt and fear

In the end, we’ll see that it was worth it

When He returns to wipe away our tears |


-Hymn of Heaven

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