This Passing Tide…

Kerissa • November 6, 2013

Yesterday, I saw my physical medicine dr. for a 4-week follow-up on my spine pain.  Sadly, physical therapy hasn’t been helping, and Dr. C thinks this chronic spine pain is related to my muscle weakness (from the underlying neuromuscular/mitochondrial issue).  So he referred me to the Spine Center at Cincinnati Children’s for a second opinion when I’m there in December.

Lately, I’ve also been having issues with swallowing/choking (in addition to weak chewing muscles), so Dr. C put in an order for speech language pathology here and possibly a swallow study.  He wants to speak with my geneticist in Ohio about this new problem in case I need to see Speech there, too.

Regarding my GI system, I’ve lost 4 pounds in two weeks..  If this keeps continuing, I’m going to hit 78 lbs. very soon!  I did get referred to GI at CCHMC, and the team is currently reviewing my records/referral.

Yesterday, I had a horribly long episode of nystagmus, and it made me want to pop my eyeballs out to stop them from oscillating uncontrollably. I really hope Neurology at CCHMC will be able to help this issue..

To make matters worse, I’ve been having cognitive problems—I often have trouble recalling what verb tense to use when I’m emailing or texting my friends, and I’m forgetting certain details. This is related to the CHAT gene mutation that was found in the mito-exome.

As you can see, I’m not doing that well.  But I am reminded that I can do all things through Christ who strengthens me!  Thank you, Lord, that I have You to lean on!

I’ve been super busy getting all these appointments lined up in Ohio!  It now looks like we’ll be there for about 2 weeks (and longer if necessary).  My parents and I leave for Ohio in only 3 1/2ish weeks..!

Many blessings on your week,

kerissa

 “These sufferings, this passing tide
under Your wings I will abide ,
and every enemy shall flee;
You are my hope and victory.”
~lyrics to Praise the Father, Praise the Son

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