another update

Kerissa • September 12, 2012

Hi, guys!

Here’s a little update: I’m being referred to see an orthopaedic spine surgeon who has a good knowledge of EDS and CRPS.  Thankfully, I can see him this coming Monday.  My pain doctors aren’t sure yet why I’ve been having a drooping eye and headache until I get some imaging studies done.  An MRI is contraindicated because I have an implant in my back, and my pain dr. doesn’t really want to do a CT scan because of its high dose of radiation on a 19-year old.  So we’ll be discussing this predicament with the orthopaedics dr. 

My pain dr. doesn’t want to do anything for my hand yet until the head/neck problems are more under control.  And I can’t have physical therapy at this moment because of the unknown..

I hope things move along quickly cuz this drooping eye is getting bothersome..

Kerissa

By Kerissa Lee October 19, 2025
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. ❤️
By Kerissa Lee October 4, 2025
"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
By Kerissa Lee September 3, 2025
"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