April 2021 update
Kerissa • April 11, 2021
Hi, friends.
- I just wanted to let you know what’s been happening lately. In the middle of March, I started losing muscle control in my arms/hands.
If I’m holding something, my hand will flop but then regain control quickly. Or if I’m holding my phone to text, etc., my fingers will suddenly tap the screen numerous times with rhythmic, uncontrollable movements. There are many other examples, but it’s hard to explain unless I showed you.
- I had a virtual appointment with my neurologist in Seattle yesterday, and he thinks I have something called “negative myoclonus.” I’ve had “regular” myoclonus for several years now, but this “negative myoclonus” is worse than that….it doesn’t feel good. He said this is stemming from my brain (due to the mitochondrial disease).It’s really hard having to deal with yet another issue on top of everything else, but I know the Lord will help me.
I have to start another medication called clonazepam, and a big side effect is drowsiness. Would appreciate prayers that this will calm these symptoms down and that I don’t experience bad side effects. I wish I didn’t have to take so many meds….my list is getting sooo long.
- I had a COVID test done today (a requirement for any surgery) as my left wrist surgery for my De Quervain’s diagnosis got moved up to this Monday the 12th! It was originally set for the 23rd, but the pre-op doctors recommended that the surgery not be done in the OHSU outpatient surgery center but in the main hospital. The ORs in the main hospital are more equipped in case anything were to happen. I’m thankful they’re being careful, especially since having a mitochondrial disease makes things more complicated. I have to get there at 7 AM, and surgery will begin around 10 AM. The regional anesthesia team will be starting a brachial plexus nerve block before surgery as a means to try and prevent a CRPS (Complex Regional Pain Syndrome) flare-up. I’ll go home with a pump that delivers medication to my arm. Even though this is not a major surgery, I would be so grateful for your prayers on Monday!
Dear friends, At the beginning of October, I started taking a new medication for the autoimmune disease. I thought I was tolerating it just fine, but after several days passed, I began experiencing nausea, loss of appetite, weakness all over, and increased pain. 🙁 It’s like I’m experiencing another “mito crash.” I found out that this specific lupus medication affects mitochondria. That is, it causes an overproduction of reactive oxygen species (ROS). This, in turn, causes cell damage and oxidative stress. I sure wish the rheumatologists would have known about this before prescribing. But I have to remember that Mitochondrial DNA Depletion Syndrome is rare, and they’re not “mito experts.” Anyways, the last time I felt like this was back in May.. I’m so grateful to God that I haven’t needed to be hospitalized from this, but at the same time, I’m also sad that this happened at all, especially because I had such a nice stretch of stable health. I’d really appreciate your prayers, that this muscle weakness can resolve soon, and that this increased pain all over will get back to my baseline. Every time I have a “mito crash,” it feels like I’m fighting the flu which always sucks. The pain has been hard to bear. And whenever I’m in the thick of it, it’s difficult to remember that this too will eventually pass. 😢 Pray that I will endure and follow Jesus’ example like this passage from Hebrews 12:1-2– “Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross...” Thank you all so much for praying for me. ❤️
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." James 1:2-3
"The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." Lamentations 3:22-23
