Genetics visit: Day 3

Kerissa • April 15, 2013

My mom woke me up “early” this morning to tell me we need to pack up because the Ronald McDonald house in Cincy called to tell us they have a room available!   God is so good.  We get to stay there the whole week!  78 families stay at this house—it’s the 5th largest in the nation.

can you spot Ronald?

 

RMH grounds

 

 

all the colored pins represent all the Ronald McDonald houses in the world!

getting a tour of the house

our room

our room

RMH gives each patient a welcome bag full of fun things

they also give each patient a homemade quilt!  they sure know how to make me feel welcome.

standing in line for a yummy Italian dinner—shrimp scampi, baked ziti, salad, and garlic bread! all the meals are prepared by different families and groups! so blessed by them!

 

I had a great, productive Genetics visit. The dr. thinks something else is going on that’s not a part of EDS/CRPS/POTS. She thinks I may have a mitochondrial disease…so once I see Neurology and Pain in the next couple days, I’ll get blood drawn to test my mito DNA this week. How exciting that we may be getting closer to an answer!

Dr. S and me =)

Tomorrow I see Neurology at 12:30 pm!  Hope all of you are having a blessed day!

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