The latest.. (a mix of wonderful news and rough news)

Kerissa Lee • June 21, 2025

"Weeping may tarry for the night, but joy comes with the morning."

-Psalm 30:5-

Dear friends,

I was going to start off this update with some rough news (which I’ll share below), but I just received an important phone call this afternoon. God knew my heart was really struggling and that it needed some encouragement. The news is that I GOT ACCEPTED to the Undiagnosed Diseases Network through Harvard!!! 🥹🥹 Just want to clarify that not every accepted patient finds the disease-causing gene, but it’s still so amazing that my case got accepted in the first place! All praise and glory goes to God!!! ❤️ Thank you so much for praying for this, too. 🥲 I have a “consent call” coming soon where I’ll learn what the next step is. :)

Now to the challenging news…. I don’t know how it even happened, and it just came out of the blue. Last week, I started experiencing left low back and hip pain, and it has continually worsened to the point that I was in tears during the night due to the pain. 😭 It’s been rough to deal with a new pain issue combined with all of the other pain: deep, achy pain in my legs from the mitochondrial depletion, nerve pain from the small fiber neuropathy, hip pain from the right hip labrum that I tore a second time a few years ago (I haven’t been medically stable to get it surgically repaired again), and joint pain in both shoulders and both elbows from a currently unknown issue. 🥺 Still waiting to see the rheumatologist in late August. It’s difficult to be in pain all over my body 24/7, and it’s hard not to get overwhelmed by everything. It’s especially rough when I have to act normal on the outside even though it hurts so much on the inside. 😭

I’ve been crying out to God, asking for all this to resolve, but if it’s not his will, that he will help me to endure. In Psalm 22, David lamented, “I am poured out like water, and all my bones are out of joint.” That’s what my thirty-two-year-old body feels like. 😔 And yet, later in the same chapter, David was still able to praise the Lord: “For he has not despised or abhorred the affliction of the afflicted, and he has not hidden his face from him, but has heard, when he cried to him.” Please pray I can find ways to praise God in the midst of this constant pain. ❤️

It’s also been feeling like the enemy doesn’t want me to open my upcoming store because every time I start to physically improve (like when I recovered from this latest mito crash), I get closer and closer to officially opening, but then…something new like the above happens. 😢

I saw my PCP, and we talked about what could be causing this back and hip pain. We’re not sure if there’s something going on in the lumbar spine. Or if I possibly re-tore my left hip labrum again but in a different spot.. So he’s going to connect with my physical medicine specialist to see what type of scan should be ordered. In the meantime, he increased my pain medication, and I see him again virtually next week.

Even though it’s been a tough last several days, I wanted to end on a positive note to share some more huge news that I’ve noticed my neck has been getting stronger after a long 8+ months. Isn’t that so wonderful? This joy has been dampened a bit by all the other hard things going on, but it’s still a wonderful gift from God. 💚 I can’t wait to surprise my neuromuscular neurologist the next time I see him since he was the one who thought my neck strength couldn’t improve.

When I next update, I hope by then I’ll know the full plan from the UDN. 😍

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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! 💚 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! 🥹 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)! 🥰 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..

August 6th Surgery Prayer Requests 💚

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. 💚 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. 🥺 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