Updates on the past few weeks.

Kerissa • September 14, 2017

Hey friends,

Thank you so much for praying for me and my family.  It means a lot to all of us!  Your love and support really encourages me.

My sister had her abdominal CT scan, but aside from some incidental findings, the scan was completely normal and didn’t explain her symptoms at all. She saw her GI specialist who recommended an upper GI endoscopy.  That was done on the 11th.  Other than a little tissue inflammation (the dr. biopsied 2 areas, and we’re now waiting for results of those), the scope, too, was completely normal and again doesn’t explain her symptoms.. I know “normal” is good news, but it’s been frustrating and discouraging for her and all of us as we still don’t know what’s going on.  Thankfully, the dramatic weight loss has stopped, but she still feels ill and has the same upper right abdominal pain.  Next week, she has an appointment with a naturopath, and we’re praying the dr. has more insight and can think out of the box..

I recently had a brain EEG that my neurologist ordered to figure out why I’m experiencing frequent (and sometimes severe), whole body jerking, especially at night. EEGs are no fun because the tech has to place 28 leads with “glue” all over your head!  I also had to “hyperventilate” (which makes you feel super yucky) and face a strobe light with rapid, flashing lights….both of those are standard tests that can trigger seizure activity.  Still waiting for results, but I do have an appointment with my neurologist on the 25th.

I also had a follow-up with the sleep medicine provider.  I have obstructive sleep apnea (from muscle weakness) and need to use my BiPAP machine every night.  Unfortunately, I’ve been having worsening central sleep apnea (CSA happens when the brain doesn’t tell the body to breathe….this is much worse than OSA…).  I’m so exhausted and wake up with really bad headaches every day.  The sleep specialist wants me to use something called an adaptive servo ventilator or something else like that for the CSA, but I first need a sleep study done in the lab in order for my insurance to cover the machine.  Sadly, the lab is very booked out, and my study isn’t until December! They are trying to get me in sooner, though..  Please pray there’s an opening sooner than December!

I started that medicine for my kidneys to potentially hold on to magnesium better, but I need to wait a couple of weeks to see if it really helps..  My blood pressures can get pretty low with this med (it can drop down to 82/56ish), but thankfully, I haven’t had worsening dizziness or lightheadedness.

Tomorrow, I have a podiatry pre-op appointment as I’m having surgery next week for ingrown toenails on my big toes.. Even though I cut my toenails straight and don’t even wear shoes often, my nails still curve so much and cut into the skin. It causes swelling, redness, and a lot of pain that aggravates my small fiber neuropathy.  I really didn’t want to have this done and we put it off as long as possible by just having my podiatrist clip the ingrown toenail as much as possible, but that only “fixes” the problem short-term.  He recommended that I have this corrected permanently, so we decided to go through with it.  I have to be put out for this, and I’ll have to do “wound care” for 2 weeks. Not looking forward to it, but I do want to get this problem fixed.  The day after the procedure, my pain dr. will be doing a bilateral lumbar sympathetic nerve block to calm the surgical pain down so that I don’t have a nerve pain flare-up in both feet..  It will be such a full week as I also see my GI dr. on Monday the 18th.

This Friday, I have an ENT (ear, nose, throat) appointment because I’ve been having swallowing issues that cause choking. We’ll see what they say/recommend.

As most of you know, I played violin for about 9 years (my sister taught me, and all throughout the years, we played beautiful duets together….I have to say, we sounded really good.. haha).  I was so very sad when I had to stop because of CRPS (complex regional pain syndrome) that spread to my left hand.

After numerous years, the CRPS slowly resolved in my left hand (but I do still have nerve pain in both hands…the nerve pain is much worse in my feet, though).  My hands have been “itching” to hold my violin and bow, so recently, I picked up my violin after not even touching it for several years.  To my amazement (and my sister’s), I was still able to play for a little bit without aggravating the nerve pain.  Yes, my hand is super weak, but I can still play with vibrato and even shift to different positions (and not just stay in 1st position…that’s violin jargon for those who are confused..).  My sis and I played 2 duets right then, and it brought back so many special memories!!  I was so happy. I wanted to play more but didn’t want to overdo it.

Well, a day or so after, I started having really bad pain in my shoulder, and now I can’t move it well at all..  My physical therapist says I have a shoulder impingement… It was so disappointing to hear that, but I still want to play violin!  And thankfully, he did say that I’ll be able to play again once this heals.  He said it can only be for a few minutes at a time, though.  But I’m just so excited the pain in my left hand is not at all like it used to be!!  The pain was so very severe back then with discoloration and swelling.  CRPS is just the worst.

I think that’s all for now.. So much keeps happening….and it’s been super busy, but I’m taking it one day at a time and leaning on the Lord for courage and strength.  He is full of grace and compassion, and I could never do “this” without Him by my side!!

Catch 22

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. ❤️ 

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