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, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! 💚 All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! 🥹 My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! 🥰 I can’t wait until I can show you his face—he’s so adorable. 🩵 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it..
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1
Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul
