What a day!

Kerissa • August 15, 2012

Since my voice is gone (I’ll explain why in a minute ;), I decided to blog now cuz I have nothing else to do…just kidding.  But really, I pretty much can’t eat or drink, and I’m so hungry since I haven’t eaten since yesterday..  Anyway , here’s the story of my day:

Once I arrived at the pain center, I got checked in and was able to see my favorite nurses.  They’re the sweetest!  I also met a new fellow.  He’s so kind and compassionate.  It’s hard to believe that this is the third set of fellows that I’ve seen so far!!  When my pain dr. came in, I asked him, “Are we ready?”  Procedures are nerve-wrecking.  He laughed and told me he’s ready emotionally!  Once I was on the procedure table in the “operating room,” my docs used ultrasound to locate all the structures and arteries for safety reasons and to try to find a good spot to block the pain.  But they had to resort to fluoroscopy only because ultrasound wasn’t giving them a good view of where to inject the medications..  Saying it was painful is an understatement.  And choosing to stay awake probably didn’t help..  They had to really dig their fingers deep into my neck to feel for the vertebrae.  It was hard to breathe cuz they were pushing so hard.  I ended up having to get “poked” twice because the first area didn’t work to inject the medications…this meant they had to dig even more!  Despite their painful probing, I’m so thankful for them.  They were able to keep a light and fun attitude in the midst of a challenging procedure.  They called me a “champ” and a “trouper,” and they kept telling me I’m doing great.  My nurse held my hand and stroked it, haha.  She’s the best.  The procedure was pretty long, so once they pulled the needle back out and sat me up, I was so relieved!  Soon after it was finished, I moved my hand and looked at it.  The swelling reduced, and the color was better!  Even the pain went from a 9 to a 1-3.  Everyone was so happy.  Within minutes, my left eye started drooping which is called Horner’s Syndrome.  Thankfully, that’s only temporary because it’s a “good” side effect of the block.  When I went down to the lobby, I suddenly lost my voice which is also another good side effect because it tells my doctors that they injected in the right place.  All through physical therapy, I had to whisper to my therapist, and he kinda had to do all the talking, haha  It was pretty humorous.  After PT, I ran into my hand therapist.  It was so nice to catch up a little bit.  He jokingly told me I’m going to waste away since I haven’t been able to eat.  I also can’t cough or yawn cuz my nerves are temporarily not able to control my vocal cords, trachea, etc.

So here I am, still not able to talk or eat well.  If I try to swallow, I sometimes choke.  My neck hurts really bad, too.  I’m trying to wait patiently for all this to pass!  I’m to keep a pain diary and record my pain level every hour for today, then once every day until I fill out the whole page.  I’ll be seeing my pain dr. in a few weeks for follow-up..  I’m not sure what’s ahead…these blocks are temporary, but I really pray the severe pain stays away for at least a month!

Thank you for your prayers!  God is good all the time!  I’m so blessed.

By Kerissa Lee November 17, 2025
Dear friends, Thank you so much for praying for me when I had that bad reaction to the autoimmune medication last month. I’m so incredibly blessed by your love and support. ❤️ I saw rheumatology recently, and instead of trying to prevent actual autoimmune disease from starting, they want to just monitor without any medication therapy. In other words, they want to see if more symptoms like fevers or rashes will appear (besides the joint pain that I already experience).. The medicine I did try (which worsened my mitochondrial symptoms) is actually the “safest” out there, and the other treatments for autoimmune disorders are much harder on the body—the team doesn’t think I’ll tolerate those well.. It’s difficult for them to know if all the bad antibodies that have been found in my blood will cause “actual” disease, and only time will tell.. So the plan is to just monitor and follow up with them in February. I wanted to see if my body could recover from this setback without having my IV fluids switched to a higher dextrose percentage. But by the last week of October (week 3 of this mitochondrial flare), the muscle weakness and increased pain all over was sadly still persisting, so I told my doctor. He sent in a new IV fluids order with the higher dextrose, and I’ve been receiving it for about 2 weeks now. I have definitely noticed an improvement in the muscle weakness which has been a huge blessing from the Lord. It was such a gift to feel well enough to go to a friend’s wedding reception at my church last week. 🥹 My cup was filled because I haven’t been able to see so many church friends in years! Regarding the piece of plaque that traveled to a small artery in my retina, I just had the carotid duplex scan completed last Tuesday to see if there’s any narrowing in the neck arteries. I also have the heart echocardiogram scheduled for tomorrow. My biggest, ongoing struggle has been my sleep. I’ve sadly been in a “catch 22” situation for many months now. I mentioned before that I was started on a new and safer pain medication this year. A rare side effect is insomnia, and it’s simply horrible. Night after night, every single day, I’m not able to fall asleep until after 4-6 AM. 😢 Believe me, I’ve tried every type of trick…from different sleep medications that my sleep specialist has prescribed, to all sorts of sleep supplements, praying, listening to worship music or white noise, stopping caffeine intake, etc. Nothing helps. The thing is, if I didn’t take this “new” pain medication, the pain from Mitochondrial DNA Depletion Syndrome is difficult to manage and it’s like an 8-9 on the pain scale. So then I’m up through the night, in horrible pain, and not able to sleep. But when I do take this medication, the pain is manageable, and it’s much safer to be on... Yet, I can’t sleep well while on it... Catch 22. I don’t know what to do, and it’s hard not to feel alone in this struggle. I’m so thankful to God that my health in other areas has been pretty stable.. In fact, this month (November) marks ONE WHOLE YEAR since I was last admitted to the hospital! Isn’t that soo amazing? Aside from these occasional mitochondrial flares/crashes (which happened in December, May, and October), I’ve been doing incredibly well, now that the neck weakness has resolved. But, this sleep struggle persists day after day.. I would love to be able to attend my church’s morning service in person or do many other activities in the morning. 😞 But I’m super exhausted. So many times, I ask God, “How do I go on and keep doing this every single night?” One thing I’ve learned is that God’s grace is truly sufficient for each day. He is the one who supplies me with the energy and grace to keep enduring. It’s hard, and I don’t know how long this sleep trial will last.. But, as Thanksgiving draws near, I’m reminded that I do have so much to be thankful for. Some of the biggest things: being physically able to help babysit my 4-month old foster nephew, shopping at the grocery store, having hand strength to design new note cards like the ones shown here, no longer experiencing neck weakness, and much more. The verse from Zephaniah I recently hand lettered above has been so encouraging lately. God is right by my side; he is mighty to save and will keep helping me through anything that I face. ❤️ 
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