Another Hard Day

Kerissa • December 17, 2012

Everything is still raw, and I wept great big tears this morning, but I know all of you want to know the results of my MRIs, so here they are.  I don’t have the report yet, but in one word, they are “normal.”  I don’t understand. :'(  I’ve asked God all morning, “Why??”  I know I should be full of joy, but honestly, I’m so sad because this means I have to keep waiting for an answer.  I’d rather have bad news than still no answer.  I know how to accept bad news, like when I got diagnosed with CRPS and EDS.  But having no answer…that’s so hard.  These last 3 months have seemed like 3 years.

I have a follow-up tomorrow with my pain dr. and a follow-up on Dec. 27th with my neurologist.  Here we go again.  In her words, we have to go back to the drawing board.  I was able to have a short phone call with her this morning, and I have to say once again, that I’m so thankful for her.  She encouraged me and told me not to give up hope.  She’ll do all she can to help.  She’s still glad I had those MRIs cuz she was able to rule out a brain tumor or Multiple Sclerosis.  I hope to talk with her about the neurological side of EDS because I have learned that there have been cases of EDS with ptosis and myoclonus.

If she still can’t find out what’s going on, the Mayo Clinic, John Hopkins, or someplace like those might be in my near future..  Also, in March, I have a follow-up with my spine surgeon.  This past September, he told me that if I still have the headache in 6 months, then he said he’ll chase this more in terms of my cervical instability (which causes neck pain and headaches).

I am sad, but I know this isn’t the end of the world.  As this song says, pray that I will take courage, knowing that my Lord and Savior will defend, protect, and uphold me with His righteous right hand.

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