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 cannot believe it’s been more than 2 months since my last blog post! So much has happened, but most of it is very happy news!! ☺️ I saw my GI surgeon in September for my post-op appointment (check out my previous post if you missed what surgery I had in August). I’m all healed thankfully, although there is now a noticeable crater on my abdomen where my j-tube used to be. :( Scar tissue inside is what’s causing that, and she told me I need to be careful when carrying very heavy things because I could get a hernia in that spot. 😣 If that happened, she said she can easily repair it! I definitely don’t want another surgery, though! Aside from the short 4-day hospital stay I had in August for that abdominal surgery, I’m soo happy to share that the middle of November 2026 marks 2 WHOLE YEARS since I was last admitted to the hospital for a “mito crash!” I could cry from tears of happiness, and all praise and glory truly goes to God!! 🥹 My previous stretch of stable health lasted about 17 months (from September 2021 to February 2023), so I surpassed that which is simply amazing! Because my health has been doing so well, even more incredible news is that I got a part time job!! I found work through care.com since I LOVE babies and kids. I started occasionally taking care of a 6 month old baby girl—she’s so adorable!! I also sometimes take care of a 5 year old girl with her 3 year old brother. For both of those jobs, I’m just the backup (for example, when extended family can’t provide care). But, last week, another mom reached out on care.com asking if I could be her 2 daughters’ afternoon nanny every Monday—the oldest girl is 6 years old, and her little sister is almost 3 years old. It’s been so wonderful and fulfilling to be able to work. I never want to take for granted how much of a gift it is to have a job! 🥲 I do still have to rest my body on the days I don’t work because my muscle spasticity gets soo intense and painful. 😞 It feels like my back muscles just continually clench up and spasm. Very thankful for the muscle relaxant Baclofen which helps the extreme tightness! The chronic pain also worsens in my legs/back, and my hand tremors do, too (called minipolymyoclonus). Regardless of these symptoms, it makes me so happy and thankful to God for the ability to work! 💚 You might have noticed that I haven’t mentioned anything lately about my Pain With Purpose store. There are a bunch of reasons, but one of the biggest is that shipping has become more and more expensive which is a bummer. 😞 For the past year, whenever a customer places an order, I’ve been paying part of the shipping cost out of my own pocket because I wanted to keep the shipping fee low. I’ve also wanted to keep card prices low because I totally understand how expensive everything is in this economy. But in today’s digital world, a really nice card (at Papyrus, for example) could cost more than $9!! So charging only $2.75 for one of my cards on top of keeping the shipping fee low has been a challenge. After thinking about it a lot, I’ve made the decision to close my store—at least, for now! Next year, it’d be super cool to sell my items (cards, stickers, bookmarks, prints, and magnets) at something like a pop-up! 😊 So I will definitely be sure to keep you posted with any new shop updates! If you did place an order this past year, I wanted to say a big Thank You!! It meant so much to me, and I hope my cards were an encouragement. 🥰 I don't know what God has planned for my future regarding my health and everything else, but I just want to have faith and keep leaning on him for strength, through any future highs or lows. The Lord truly is faithful! Thank you so much for praying for me these past 16+ years. ❤️
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
