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Kerissa • June 9, 2019

Hey friends,

So hard to believe we’re already halfway through the year!

A lot has happened medically since I last blogged, so here’s a little update…  It’s been pretty rough lately. So I just wanted to thank you for continuing to pray for me.  Your prayers definitely keep me going.

About 2 months ago, I got diagnosed with hypoparathyroidism which can also occur with mitochondrial disease. I’ve been experiencing numerous symptoms—there aren’t really any good treatments for it, so I have to go back and see my naturopathic dr.  But I haven’t been able to see him yet for this issue because I’ve had TOO many other doctor appointments the past several weeks.

In addition, I started experiencing horrible neck pain, and I don’t know what’s causing it. The OHSU comprehensive pain center has become very holistic in the last 2 years, and they now offer chiropractic treatment (as well as acupuncture, massage therapy, and naturopathic medicine).  So my pain dr. is having me see a chiropractor on top of my regular physical therapy appointments that I have twice a week….but sadly, none of this seems to be helping my neck. My physical therapist has even been doing a lot of “cupping” on my neck/shoulders.

I have an appointment with my orthopedic doctor on June 17th, and I’m praying he will be able to figure out what’s going on.  It’s just been so difficult to deal with this new neck pain on top of all my other chronic pain.

And then, to make matters worse, for those who may not remember, I was born with a hemangioma (benign blood tumor) on the bottom of my right foot.  Well, growing up, it caused so much pain to the point that I couldn’t bear weight on it.

So, at age 17, I had it removed at OHSU Doernbecher Children’s Hospital.  Long story short, it’s now been 9 years, and sadly, it seems to be growing back. It’s causing so much aching, throbbing pain, and I can’t bear weight on it well.  My pain dr. thinks it’s wrapping around a nerve or pressing into it. :’(

I saw my PCP this past Monday, and he wonders if the surgeon wasn’t able to remove all of the “bad” cells then or if this is going to become a “thing” where I need surgery every 8-9 years…  So he is referring me to a surgeon to hopefully get this removed again..

I’ll always wonder why I (and none of my siblings) was the one to be born prematurely with this birth defect as well as the sinus defect near my ear (which was repaired when I was 10 years old).  I also always wonder why I’m the only one with mito….and EDS….and Wilson’s Disease….and mast cell disease, etc. and why none of my siblings are affected (as far as we know..).

I wish things were different….for example, it’s been 8 whole years since I graduated from high school, and I realize that I could have graduated from med school (one of my dreams!) this year if none of “this” happened..  But as you can see, my life had/has a different direction, so the only thing I CAN do is keep trusting the Lord with this wild journey.

I still have so many questions, but you know what?  The Lord continues to give me grace for each day and His peace amidst all this unknown.  It’s comforting to know that, even before I was born, He had a specific plan and purpose for my life.  I recently read this quote by Morgan Harper Nichols, and I thought it was so true: “You do not have to know what is going to happen in order to have hope.”  No matter my circumstances, my hope will always remain in Christ!  And I can do all things (whether it’s dealing with more diagnoses and more pain or having more surgeries..) through Him who strengthens me.❤

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Next month, my parents, sis, and I head to San Diego to see my mito specialist.  I have so much to update him on, and I look forward to hearing the latest on clinical trials since the UMDF (United Mitochondrial Disease Foundation) national symposium for 2019 is happening this month.  We’re also going to stay an extra day in San Diego (4 nights instead of the usual 3), so I’m excited to explore more!

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