Keeping the Faith

Kerissa • January 29, 2014

This recent article makes me happy. :]  It’s pretty much the only happy news in this post. lol


_________________

I saw my GI specialist on Monday.  As of now, I don’t have to alter my medications for all the GI stuff, but I’ll follow up with Dr. P again in 3 months or so.

Thursday I have a return appointment/x-rays with my spine dr. to check up on my cervical spine instability from the EDS..  Every time I get a new set of x-rays, there’s been a slow increase in vertebral slippage, so we’ll see how it is now.. :/

Trying not to stress or grow discouraged about it, but starting last week, I’ve been losing my grip in my right hand.  *sigh*  Seriously, something new always comes up every 2-3 months!  It’s hard to explain, but this seems more than just weakness.  For example, I was holding my phone in my right hand the other day, and I suddenly dropped it on our hardwood floor because my grip didn’t stay.  Another time last week, my mom trimmed my bangs, and I held newspaper underneath to catch the cut hair.  My right hand grip of the paper suddenly let go.  It’s as if my brain is not sending signals to my hand…  My neurologist is usually booked out months in advance, but by God’s grace, she has an opening two weeks from today.

I hate that my case is always so complicated. :[  I’ve never had something as simple as a broken bone….I don’t have a common disease like arthritis or diabetes or heartburn.  Instead I have disorders people have never heard of—all my genetic mutations are associated with diseases like distal hereditary motor neuropathy, central core disease, charcot-marie-tooth disease, minicore myopathy, malignant hyperthermia, mitochondrial disease, and many others.  What makes things worse is that they’re all similar in nature.  And THAT’S why I’m a hard case for my doctors.

And IF this new symptom is related to distal hereditary motor neuropathy (a motor disease of the spinal cord) or the like, pray that I won’t go crazy from all these countless diagnoses.  Serious!


“It seems like there’s so much to hope for
So many dreams I wish they all could come true
But when I think about Your ways, Lord
It gives me so much faith in all that You do

Faith to see beyond what I can see
Faith to know that You will do great things
I will trust You, Lord, I’ll always believe
As I hold onto my faith,
Jesus, You are holding onto me”
~partial lyrics from one of my favorite songs

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