Concerning issues.

Kerissa • August 10, 2017

“But I will call on God, and the Lord will rescue me. Morning, noon, and night, I cry out in my distress, and the Lord hears my voice. He ransoms me and keeps me safe from the battle waged against me…”

Psalm 55:16-18a

Hello friends,

Wow, where has the time gone?? I haven’t blogged here in almost a whole month!

It’s been a busy summer as my parents and I recently got back from Seattle. They had a wedding to go to, so I wanted to come along so that I could see my pain dr. at UWMC.

Oh it was so good to see him! He will always be my favorite doctor, and when we said goodbye at the end of the appointment, he kissed me on the head and hugged me tight. I miss him so very much and wish he still worked at OHSU. But I’m so thankful he’s only one state away and that I can still see him at least once a year.

me and my pain dr.he’s the best!

He gave some good pain management recommendations for all the chronic pain, and hopefully, my pain dr. here or my palliative ANP can start me on one of them soon. My next appointment with my local pain dr. at OHSU isn’t until the 29th, so the palliative care team is trying to get me in soon.

The pain has been really severe lately, and the hot weather we’ve been having definitely hasn’t helped. It causes my feet to get really swollen and red. During the Seattle trip, my legs ached terribly and my feet burned more than usual because I was so exhausted from not sleeping well, needing to wake up “early,” etc. When I’m tired, all the pain and other symptoms worsen.

I got my blood Carnitine levels back, and my mitochondrial geneticist in Pasadena said they’re quite low, so he wants me to have 2 grams of IV Carnitine added to each of my nightly TPN (IV nutrition) bags. He said it may help some of the pain and weakness that I experience. My GI dr. recently put in the order for this to be added.

I saw my physical medicine doctor, and he ordered a lightweight thoracic spinal brace for my achy back pain and muscle weakness. It’s $800-$900 out of pocket (!!), so we’re trying to get it covered by my insurance. It’s taking a long time because the company that offers these types of braces wants to see my medical records first.

My physical medicine dr. is really concerned about my osteopenia. I shouldn’t have that at my age. So he wants me to work up to standing and weight-bearing a total of 3 hours a day by the end of the year. I’m only awake 6-7 hours a day! :/ But he still wants me to try so that this doesn’t turn into osteoporosis at so young of an age.. I had a follow-up with my PCP, and she talked about something called SMART goals ( S pecific, M easurable, A ssignable, R ealistic, and T ime-based )… So she told me to try working up to 2 hours first.

For the past 2 months or so, I’ve also been experiencing a new neurological symptom that often happens during the night, and it seems to be getting worse. So before ordering more tests, my neurologist first wants me to send her a video of what it looks like/when this happens. Hopefully I’ll know soon what’s causing these neuro episodes..

On top of all this, something concerning has been going on with my sister. I can’t share many details as we don’t know much ourselves, but her health has declined, starting 2 months ago (it doesn’t look like mitochondrial disease, though).. It’s so hard to see my sister go through this new health trial (she’s been experiencing puzzling symptoms), and I keep praying that it’s nothing serious. But above all, I pray that my faith (and my family’s) will remain strong in spite of this concerning and stressful time. She’s been having tests done, and on Friday, she sees a specialist.

I’ve been reflecting a lot on the verses shared above. They just comfort me so. It’s encouraging to know that we can cry out to God in our distress any time of the day, whether it’s during a hard appointment, or when the pain is severe, or when we seem to be stuck in the unknown.. And through it all, the Lord hears our voice! He doesn’t turn away but wants to hear about all our troubles/difficulties. It’s especially encouraging and refreshing to know that the Lord will rescue us and keep us safe from any battle that comes our way.

This has just been a really hard journey, and it seems like the battle will never end. But the Lord will always carry me and my family through this. He is so faithful and will never forsake us.

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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