April 2021 update

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!