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

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

The end of an era ❤️

By Kerissa Lee • July 16, 2026
Dear friends, I shared in my last post how excited I was that my j-tube was going to be switched back to the low-profile version at an appointment on June 23rd. Well, that sadly didn’t happen because my surgeon wasn’t comfortable with how much pain, swelling, and bleeding I was still experiencing. It’s a long story and hard to understand unless you’re very familiar with j-tubes, but basically, she said switching wouldn’t be a good idea, and we could try again in a few months. Unfortunately, things have only gotten worse, and no matter how many times I adjust this j-tube, the balloon for some reason keeps getting lodged into my abdominal muscle—it causes horrible pain, and not even my pain medication helps! I almost went to the ED the other day…that’s how bad the pain has been. 🥺 After thinking and praying about it a lot, I finally decided to ask my surgeon if I could have my j-tube completely removed since she still can’t find the cause of why the balloon keeps getting stuck. It’s been nearly 12 years using one, so this is a big deal! I just feel like the tract is somehow failing since the surgery was so long ago. Unfortunately, it can’t be done until the last week of July since it’s a policy of the surgery clinic to not use the tube for 2 whole weeks before completely removing (don’t know the exact day of removal yet). I can’t believe it’s almost the end of an era! The Lord has been so faithful and given me strength to endure over a decade of having a constant tube sticking out of my abdomen. Some days were truly so rough—remember I had that huge abdominal abscess back in 2023 and had to have bedside abdominal surgery and drains placed in the ED? I couldn’t have done this without God’s help. 🥹 You might be wondering, “What happens if I get worse again or have more mitochondrial flares?” Thankfully, I still have my port, so if I was hospitalized many times again, I would be given IV medications and infusions. And, if I did possibly need a tube again, I could have a g-tube placed in my stomach which is a much smaller surgery than a j-tube placed in the small intestine. We’ll cross that bridge if we come to it! In other news, I’ve been continuing to do so very well mitochondrial-wise, and God has been gracious and merciful! I feel undeserving of this huge gift of health when so many others I know are struggling (please keep praying for my uncle who’s been in the ICU since March)!! 😢😔 Aside from all these tube issues, life lately has been so full, but in the best way. I was able to study and complete the training to receive my Pediatric First Aid/CPR/AED certification! I’ve been applying to different nanny jobs and even had my first interview last week! It would simply be amazing if it would work out to have a part-time nanny job for 1-2 days per week when I don’t babysit my foster nephew. Speaking of my sweet foster nephew, he recently turned 1!! He had a “One-in-the-Sun” 1st birthday party which was super cute and special! It’s been so neat to see God’s hand on his life from birth til now.. Considering he was in the hospital for a whole month after he was born, he’s truly come soo far, and life is very sweet with him in it! 🥹💙 On top of all that, I was finally able to take the DMV driver’s test, and guess what?! I PASSED!!! 🥰 So so happy and thankful I was able to complete this simple rite-of-passage that many people half my age often take for granted. I constantly think how huge of a gift it is to simply be physically well enough to drive around town. 🥹 After reading this, you might think I'm all healed! And while I am feeling so much better than before, I just wanted to share that I still do experience mitochondrial symptoms every day: spasticity (it often wakes me up during the night because my back muscles tighten/spasm a lot), central vertigo, minipolymyoclonus which causes muscle jerking and tremors in my hands, chronic pain, insomnia, and many other things. But, I'm so thankful to God for different medications I'm on to help these ongoing issues. There are good days and bad days, but I just look back and see how much worse I used to be! I don't know how long this stable period will last, but I continually thank and praise God for it! 🥹