4 years ago today!

Kerissa • July 9, 2014

In other news, consult with Surgery (for the J-tube placement) isn’t until Aug. 6th.  And that’s just the consultation..  It’s the soonest they can get me in.  I am on the list if any other patients cancel….hopefully these next 4 weeks will go by fast.

A lot of scar tissue is building up under the muscle biopsy incision (that’s the nature of EDS), so my physical therapist has been working on trying to break it all up.  It’s so painful.  I have a feeling CRPS is flaring up in that area, but we’ll see what my pain doc says next week.

Tomorrow, I see my neurologist to update her on all that’s happened.  And the next few weeks, I have a lot of follow-ups with Physical Medicine, Neuro-ophthalmology, and Spine!  That’s on top of all the therapy appointments.  It’s been a busy summer already!

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