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.
Hi, friends, First off, the piece of art above was hand lettered by me last year before all “this” happened. I’m sad to say that I only have 3 or 4 pieces left to share until I run out.. 😢 I went to see my neuromuscular neurologist in Seattle on January 8th. My neck weakness continues to progress which has been so scary. He said I need to get a neck MRI and some specific blood tests to check for polymyositis. If it is normal, though, his opinion is that this is mitochondrial disease progression. 😔 I haven’t seen my mitochondrial specialist in San Diego in more than 3 years (I started seeing him in 2014!), so I’m sadly no longer considered his patient. The neurologist sent a new referral to him, but I’m not sure if it will be accepted.. He’s almost 80 years old (one of the pioneers of “mitochondrial medicine”). And I don’t know if he’s cutting back on “new” patients.. Even if he did accept my case again, I’m currently not physically well enough to fly down from Oregon.. 😞 My quality of life continues to worsen ever since this unusual neck weakness started this past October. I know I’ve said this before, but I truly miss doing all of my favorite things (like hand lettering art) or even simple tasks (setting up my own IV infusions, vacuuming, washing hair, etc.). 🥺 Before October, I was even starting to drive to physical therapy or the grocery store. Yes, I’m 32 and still don’t have my driver’s license due to being preoccupied fighting mitochondrial disease for almost 15 years now. I never shared the exciting news that I was able to get my driver’s permit over 2 years ago, and it was so fun to drive myself to appointments close to home. Now, I can’t do any of the above which has been difficult to process. I shed tears every now and then just thinking about all that has changed. 😢 I’m having to go to bed around 6:30 PM to lie down and rest my neck. But I’m so uncomfortable from the pain, and I don’t fall asleep until after 3 AM every night. So my pain dr. referred me to palliative care. 😢I know it’s not hospice, but I’m still sad we’re at the point where I even need palliative care. Unfortunately, they’re most likely going to deny the referral (if they haven’t already) because we were told they only see cancer or heart transplant patients. I even checked if there’s palliative outside of OHSU, but they, too, see only oncology. It’s so hard that cancer gets a lot of funding, research, and support, and those with rare diseases are left “on their own.” It’s isolating and lonely. 🥺 I saw my PCP again, and he is just the best and full of compassion. ❤️ He placed the neck MRI as urgent and also ordered more labs to keep pursuing answers since all this is such an atypical picture if it was mito progression.. In case palliative turns my case down, my dr. told me that the internal medicine clinic has a complex and chronic pain management clinic (different from the pain center that I’ve been going to since 2011). He referred me to them to try and help me get more comfortable. I have a wonderful team of doctors and an amazing naturopath, but I’m even going to see a functional medicine doctor for the first time on the 23rd. Praying he could maybe have some additional insight on everything and will offer some fresh ideas for treatment as well.. I also have an appointment with the metabolic geneticist on the 28th.. I’ve read through the Bible more than once, but it’s amazing how the Lord points us to specific verses at just the right time. I don’t know about you, but sometimes I think, “I don’t remember reading this before!” Paul David Tripp’s newest devotional Everyday Gospel has been so very encouraging. He shared 2 verses from the book of Genesis where Jacob said that God “answers me in the day of my distress and has been with me wherever I have gone” (35:3). Several chapters later, Jacob also said that God “has been my shepherd all my life long to this day” (48:15). When I read that, I felt such peace. God spoke to my heart to remind me that He is with me and for me….in every circumstance no matter how hard. ❤️ Could you please pray that I can have the MRI completed this month and not have to wait many weeks? Pray that all of my doctors will have wisdom as my case is so complex. Lastly, could you pray that I will persevere and keep walking by faith? I feel so weary, not only physically but also mentally and spiritually. 😥 Thank you so much for praying for me all these years. ❤️
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
“Be still, and know that I am God.” -Psalm 46:10
