June 2021 update and prayer requests
Kerissa • June 17, 2021
- I lettered this piece a couple years ago and never shared it until now. I’m so grateful to God that He “does not leave us as we are.” My earthly body is so broken from disease (more on that below), and to know that Christ will one day give me a new body—what a wonderful promise.
- For the past 3ish weeks, I’ve been experiencing lightheadedness along with a severe, persistent headache every single day and night. It’s been so very hard to go through as none of my pain meds have been helping much. On top of mitochondrial disease, I have something called Wilson’s Disease which is where an overload of copper builds up in my organs (the brain and liver especially) unless I take a specific medication to block the copper. Well, there has been a shortage of that med in the US, so I haven’t been able to take it. We’re not 100% sure this is the cause of my headaches and other neuro symptoms, but it seems most likely as not taking the med could be causing copper to build up in my brain. My main pharmacy told us the medication I need is still on back order. But this past week, my parents called numerous pharmacies, and God led us to one that carries it! So so thankful! I would appreciate your prayers that this will alleviate my terrible headaches and other symptoms, and if not, that we will be able to pinpoint the cause…It’s just been so horrible.
- Both of my wrists have been healing pretty well from the surgeries I had in April and May (still doing weekly hand therapy), but something new is going on—there is a painful bump that is growing under my left wrist. One of my orthopedic specialists at OHSU took a look at it and referred me for a wrist MRI as my ortho hand surgeon is booked out until July 20th.
- On top of all this, I most likely tore my right hip labrum again (for those who don’t know, I had left hip surgery in 2016 and right hip surgery in 2018 to repair torn hip labrums).
Not sure how it happened this time, but as I get older, I’ve been dealing with more joint issues from Ehlers-Danlos Syndrome (another disorder I’ve had since 2012). My hip surgeon team ordered a right hip MRI arthrogram to get the ball rolling on whether I’ll need surgery again.
- In addition, my tongue has been getting weak…I’m not swallowing correctly from the weakness, so my tongue is pushing out my bottom teeth. I grew up with a class 3 underbite (the most severe class!) and had to get it corrected, so this new problem is not good.. I saw my swallowing doctor, and I thought maybe seeing his swallowing therapists could strengthen my tongue. But he said that’s the last thing you want to do with mitochondrial disease. Since I’m deficient in energy, doing swallowing therapy would use up all my strength, and I’d be too exhausted to chew/swallow. He said there’s nothing we can do about my weak tongue—he was so compassionate in explaining. He agreed it’s a good plan to see the OHSU dental team to keep my teeth from being pushed out even further…but we’re not even sure if/when I can see them as the board is still reviewing my chart..
- All my diagnoses (Mitochondrial DNA Depletion Syndrome, Wilson’s Disease, Ehlers-Danlos Syndrome, etc.) do not have cures, so my doctors can only treat symptoms. Treating symptoms involves A LOT of medications and surgeries.
- These different issues happened all at once, and it’s been really rough. Each new health trial has been a test of faith. I’m still not able to hand letter, and I miss it soo much. It just feels like yet another thing I love is gone. I know it’s temporary, but still.. So I ask myself continually, “What does God want to teach me during this season?”
- This verse immediately came to my mind from Psalm 37:7–“Be still before the Lord and wait patiently for him.” Just 2 verses before this one, it says, “Commit your way to the Lord; trust in him, and he will act.” Being still and waiting patiently before God is trusting in action.
- As I navigate these new trials, I ask God to give me courage to trust in His plan and this path He has set for me.
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..
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1
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
