Pain eval: Day 5

Kerissa • April 18, 2013

My day at the pain “center” went great!  Super long, though, and now I’m dealing with nystagmus again cuz I had to wake up early…but overall, the evaluations were really thorough, and they were able to give second opinions and recommendations.  The dr., physical therapist, and even pain psychologist were all real down to earth!

Dr. S, the physical therapist, and me

The dr. wants me to go to a 3 week inpatient pain rehab program because I need to get better function-wise and outpatient physical therapy isn’t enough.  But…the program is in Cleveland, Ohio!!!!! :  So we’re gonna research things more and possibly look into different ones, although the only other high-reputation programs are in Chicago, Florida, John Hopkins, or at the Mayo Clinic in Minnesota.  Of course, going to something like this won’t be for a while anyways as I need to get a little better first.

I got 5 tubes of blood drawn this afternoon!  The genetic results (which will look at my mitochondria DNA genome sequence for defects, etc.) can take up to 8 weeks to come back..  So more waiting to do.. :  I also drew blood to check my lactic acid—the test results came back positive which is another sign of Mitochondrial Disease.  On Friday, I’ll be seeing my Genetics dr. again to discuss the plan the doctors formed.

In the meantime, we are planning on going to the Cincinnati Zoo tomorrow since that will be the only day with no appointments!  Yay!  So excited!

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