Reflections on the year 2021
Kerissa • January 13, 2022
Dear friends,
It’s truly been so long since I last blogged. I think almost 7 whole months?! It’s hard to believe, but 2021 was even worse than 2020 which is why the updates were rare. I just didn’t feel well physically and was exhausted mentally.
My word of the year was “trust,” and I really did have to completely trust the Lord—as everything was out of my control.
Some of the most difficult challenges of 2021:
- In February, I was taken by ambulance to Legacy Meridian Park hospital’s ED and was admitted for 8 days due to intractable vomiting and dry heaving. Despite not eating or drinking, I retched and retched day and night.The doctors found out I had gallbladder sludge and stones.
- In April and May, I had left and right wrist surgery due to something called De Quervain’s Tenosynovitis which meant I couldn’t do any hand lettering for the majority of the year. I missed it soo much! I’m slowly easing back into it, but my hands are still pretty weak from all that has happened.
- I tore my right hip labrum again due to Ehlers-Danlos Syndrome (it was last surgically repaired in August 2018), and I started experiencing more mitochondrial disease symptoms. 1) Namely, losing subtle muscle control in my arms/hands called “negative myoclonus.” 2) And, something called PEE (punctate epithelial erosions) which is essentially dryness on the corneas in my eyes. The ophthalmologist thinks my eyelids are weak from mito, and thus, I’m not blinking enough. 3) My tongue has also become weaker, so when I swallow, my tongue pushes into my bottom teeth (I will most likely need to start swallowing therapy and Invisalign treatment in 2022..).
- At the beginning of September, I once again had to go to the ED for severe right upper quadrant abdominal pain. The doctors found out that I had a gallstone stuck in the neck of the gallbladder, so they wanted to transfer me to OHSU which is a more equipped hospital than Hillsboro. I had to be NPO ( no eating or drinking at all ) for 4 days while I waited for a room at OHSU to open up which was incredibly difficult, especially since my mitochondria need food to make energy. My mouth was also like sandpaper from not drinking. Once I did get moved, my team of doctors did emergency surgery because I had early acute cholecystitis and biliary colic from that stone being stuck. I was in the hospital for 9 days because the anesthesiologist used a medication to paralyze me during surgery—the doctor said that’s necessary whenever doing any GI procedure. That paralytic didn’t mix well with my mitochondrial disease, so I was extremely weak and needed help for every single thing those following days.
- About a week after my surgery in September, I started experiencing left
upper quadrant abdominal pain which has become more disabling over time—I don’t sleep much at all during the night due to the pain, and then when I do finally fall asleep, sometimes the pain gets even more excruciating and wakes me up at 6:30 AM, 8 AM, etc.
It’s much different than the gallbladder pain and feels like a hot coal/knife stabbing.I saw my general surgeon for her wisdom/input recently, and she recommended that my GI dr. perform an endoscopy to check if I have an ulcer. An ulcer (or something like that) now makes sense, based on my symptoms. Sadly, the scope is not until February 14th as my GI dr. is booked out (and that was a cancellation). :’(
As you can see, the pain throughout this past year has been extremely hard. Not just the hip pain, abdominal pain, acute post-op pain from the 3 surgeries, the gallbladder pain when the stone was stuck, but also my daily pain from the mitochondrial disease: migraines/headaches, deep, aching bone pain in my legs, and the small fiber neuropathy in my hands and feet.
It’s so encouraging that Jesus knows what I’m going through and is there for me every step of the way. Yes, 2021 was very rough, and I think I cried more tears than the previous few years combined. But, just like this past year, I know without a doubt that God will be with me in 2022—He promised to never leave me nor forsake me (Hebrews 13:5). I love the comfort that Jesus gives in John 16:33: “I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”
Each new year, I pick a word/phrase to focus on, so for 2022, I want to remember Jesus’ exact words: Take Heart. In other words, no matter what happens this year, I pray that I will have peace in the midst of suffering and not lose hope.
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. ❤️
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. ❤️
"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
