MRA results and more!
Kerissa • March 13, 2014
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This is me in vascular form. That blue arrow I drew is pointing to my left vertebral artery—see how it’s kind of coiled and looped? That’s called tortuosity which is a new med term that I learned. People with tortuosity are prone to aneurysms/strokes, and my neurologist said it can be seen in patients with Ehlers-Danlos Syndrome. My cervical spine instability is putting stress on my arteries….so my neurologist wasn’t very surprised by this new finding. She said it’s just something to keep an eye on. |
I’ve also been dealing with decreased appetite and weight loss again.
I’ve been doing all that my GI dr. told me to do, but it’s not helping. So he referred me to their clinic’s nutrition therapist, and that appointment’s next month. We’ll see if she has any other insight to offer..
After PT and OT today, my mom and I were able to ride the tram up to the OHSU hospital again because I had to drop off my CPAP sd card at the sleep clinic front desk (my sleep dr. wants to take a look at the data to see if he needs to increase the CPAP pressure because I’ve been experiencing breathing problems due to tired respiratory muscles). OHSU gives free passes to patients! The ride was especially fun today because the weather was sunny and beautiful!
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For those who don’t live in Portland, this is what it looks like! Took this while riding the tram. |
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. ❤️
"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
"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
