In Rememberance

Kerissa • May 25, 2013

This may be a long post, but I just wanted to put my thoughts down on “paper.”

This has been a really hard year….month….week.  I haven’t cried this much in a while.  All weekend, I had to deal with a terribly long episode of severe nystagmus and an oscillating “world.”  It always feels like I’m going to go blind.  Sunday night, I experienced such nausea that my mom even had to put a bin next to my bed.

Tuesday, I saw my pain dr.  And, as fun as it always is to see him, this was kind of a hard appointment.  I asked him if he knows much about mitochondrial disease, and he told me that there are really bad cases where your muscles stop working at a young age and pretty soon you die (and mito doesn’t just affect muscles…it affects all the body systems since every organ needs energy)….or, there are those cases where you don’t know you have mito until you’re 70.  And we’re not sure yet which case I am…  Although, the younger you are, the more severe it is..  And I’m only 20.  This is what I love about my pain dr.  His honesty.  And his compassion.  I can’t remember his exact words, but I do recall him saying something like—all these conditions I’m dealing with don’t define me and we just need to figure out how to proceed with things and live a successful life.

I asked him for a new pain med to try since I still get severe headaches.  So he told me to consider this muscle relaxer that has been known to help neuropathic pain (and headaches) and maybe even calm all the myoclonic jerks I have every day.

The plan is to await the whole genome sequencing results.  If it comes back normal (as it very well may be), then I pursue a muscle biopsy and/or more genetic testing through a very experienced lab down in California.  The dr. there has been doing a whole bunch of research that mitochondrial disease and CRPS is possibly connected.  And he’s even found mutations linked between both.

Monday night, my 90 year old grandma suddenly had a heart attack (just like what my grandpa had about 26 1/2 years ago).  The doctors were able to stabilize her, but she was in a coma in the icu and on a ventilator.  They were going to leave her on life support for a couple days and reassess her in 24 hours.  After my pain appt., dad, mom, and I went to see her.  And I’m so thankful I did.  Because…at around 10:25 pm that night, my grandma went to be with Jesus.  We’re still in shock because it all happened so suddenly.

I don’t remember ever seeing this photo of Nyin Nyin (which means grandma in Chinese) holding me when I was born.
Holding me again at my 1-year-old birthday party.

The next day, I wanted to read the section in Revelation where it tells us of the coming new heaven and new earth.  I long for that day when God “will wipe away every tear from [our] eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” (Revelation 21:4)  How wonderful it will be!  No more genetic diseases with no cure, nor more heavy hearts, no more out-of-proportion pain, no more death!  That is why I don’t have to fear the future or of dying young (if that’s God’s plan for my life).  This earth is not my home any way.  I am going to my real home to dwell with Jesus Christ!

One last story—I follow a mother’s blog of a 5 year old girl with mitochondrial disease.  And one time, that little girl was not doing very well.  A friend asked the mom, “Is she dying?”  The mom replied confidently with no fear, “Aren’t we all dying?”

The reason for our suffering
Is to help us realize
That in sickness or in death
We are helpless without Christ…
And the ones who are marked by suffering
Are the ones who have found their joy
To be conquerors in all these things
Struck down but not destroyed!
-“This is Grace” by Matt Hammitt

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