Little by little, we’re moving forward…

Kerissa • October 17, 2012

Praise God, I heard back from my pain dr. today!  You haven’t read a new update in a while because I’ve been waiting, waiting, and waiting myself to see what’s next.  Okay, soo, my pain dr. sent a referral letter yesterday to a neurologist outside of the OHSU system, and hopefully, I can see her real soon!  She only takes special cases now, and according to my pain doctor, I’m a special case.

I’ve been wondering if I have something called Syringomyelia (it’s associated with EDS) because you can get a drooping eyelid, headaches, and leg weakness with that.  My pain dr. did say today that SM is possible, but I’d have to get an MRI.  He doesn’t want to take out my SCS, tho,’ until a neurologist says so.  He does think that “there is a real possibility of an MRI finding pathology that changes treatment.”  I’m glad he thinks so! haha  You’re probably thinking, Why are you glad that he thinks an MRI would show a disease process?  Well, because the previous neurologists I saw weren’t helpful at all and implied that these symptoms I’m experiencing are in my head!!  I had a terrible experience with them.  The attending neurologist that I saw last month in the hospital even had a resident psychiatrist with her. x[

So I’m soo grateful that my pain dr. understands and even told me he won’t leave me “out in the wilderness.”

Physical therapy has been tough.  My left leg still isn’t strong, and whenever I do a certain exercise, my right leg goes out of my hip socket or something like that (EDS problems once again..).  My therapist told me to stop that exercise, and we’ll discuss this dilemma tomorrow when I see him.

October prayer request

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. ❤️

Thank you! (+ a prayer request)

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

Praises & Prayer Requests

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