Unexpected

Kerissa • June 12, 2015

Oh what a crazy past two weeks it’s been.

Last week, we found out that my whole exome sequencing results aren’t in yet (and wouldn’t be completed by the end of this month) even though the test was started the first week of February.  Btw, the laboratory I’m getting the test through is not affiliated with UCSD Medical Center.  So it’s not UCSD’s fault this time.  For those who’ve been following the blog a long time, you probably remember something similar to this happened last year..

Anyways, back to the story….we had all our plans made—lodging, airfare, and the scheduled June 23rd appointment with my mito specialist.  The clinic coordinator told us the appt. would need to be postponed.  Talk about stressful!  She also explained to us that my mito dr. is booked out until October.  Disappointed and sad by this news, we knew it would take a miracle for me to get in sooner than October.  But like ALWAYS, God is faithful and in control!  He is good.

Long story short, one of my mito specialist’s other patients took my June 23rd appointment, and I was able to take their scheduled July 7th appt. which is just two weeks after the 23rd!  One of the representatives at the lab double-checked with the director and all the PhDs who will be putting together the interpretation to make sure that the test will be finished by the 7th.  And they said it will.

True, we have to change our flights and lodging, but it could have been a lot worse!  So I’m thankful.  I do hope nothing like this happens again!

This past Monday, I had my 3rd sleep study to check up on my breathing and sleep apnea.  And all day Tuesday, I had my 1st multiple sleep latency test (this one was torture because of what it involves) to rule out narcolepsy and other hypersomnias.

Wednesday, my home health nurse came to draw labs from my central line and change my line dressing site (she comes every single week).

And today, I went through my 1st EEG to rule out seizures and pin-point where the myoclonus is coming from.  I had electrodes placed on my head 3 times this week alone.  Not pleasant! :/  Hope to get sleep study and EEG results by next week.

picture of my brain waves

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