Mitochondrial Disease Awareness Week 2019

Kerissa • September 16, 2019

* I shared this on Facebook and Instagram but wanted to post it on my blog as well since some of you here aren’t on social media.*

I originally had the background of this in blue, but then I remembered that today starts Mitochondrial Disease Awareness Week 2019! So I of course had to change it to green. You know how diseases have a specific color/ribbon (gold is for childhood cancer, etc.)? Well, green is for mito.

To bring more awareness, I just wanted to share a little about how Mitochondrial DNA Depletion Syndrome affects me which is the specific mitochondrial disorder that I have (there are many types).

Because my mitochondrial DNA is getting depleted over time (mitochondria are the organelles that make energy for all the organs and cells to function properly), I have to sleep over 15 hours every day which has always been so hard, especially in the winter—I wake up when it starts getting dark and go to bed when it’s dark so I don’t get to see much daylight at all. When I don’t get enough sleep, all my symptoms get worse, especially the pain.

Speaking of pain, I get headaches everyday, have small fiber polyneuropathy in my hands and feet (which causes terrible burning, aching pain), experience abdominal pain when the GI dysmotility is even worse than usual, neck pain because of the hypertrophic arthropathy that I have due to the congenital vertebral fusion I was born with, and also pain on the bottom of my right foot due to the vascular malformation I was also born with that grew back this year (even though it was removed in 2010). I have to tip-toe on my right foot because the mass hurts so much. I’ve had more than 18 surgeries and have another foot surgery coming up to remove the mass once again. I’m on really strong pain meds, but even those don’t take it all away..

I’ve had sepsis 3 times (2016, 2017, and 2019) and septic shock once (2018).

I have a j-tube in my abdomen to flush medications through because big pills get stuck in my esophagus caused by esophageal dysmotility/weak peristalsis. I also have a central line in my chest for IV nutrition and IV magnesium for renal magnesium wasting.

I have muscle weakness and fatigue so I have to use a wheel chair for long distances. I have numerous eye disorders caused by mito—ptosis (drooping of the eyelids, especially when I’m really tired), external ophthalmoplegia (paralysis of certain eye muscles), and nystagmus (involuntarily “shaking” of the eyes).

I also have a mast cell disease, POTS, EDS, and Wilson’s Disease (my doctors say I’m so rare).

I have centrally-mediated vertigo and also complex sleep apnea (both central and obstructive). I have to use an adaptive-servo ventilator at night because without it, I only breath on my own 40% of the time.

I’ve left out many other medical things, but you get the gist..

As you can see, having mito has been extremely life changing and more difficult than words can explain, but I want you to know that I really and truly could not do this without Jesus. These beautiful lyrics are by @elevationworship, and when I call on Jesus, He is there for me. He helps me. He restores my soul. He gives me purpose in all of this pain.

P.S. If you made it this far, this month also marks 2 years since I started learning how to hand letter!! It’s been one of the best decisions ever, and I’m so glad I took Becca’s amazing online courses (@thehappyevercrafter on Instagram). Lettering has been so therapeutic to me while I’ve been on this journey.

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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! 🥹