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, I just wanted to write an update on what’s happened since my last post. Sadly, the 2 different tube changes haven’t helped, and there’s still so much leaking around the tube. 🙁 The abdominal pain was decreasing each day, but for some reason, it has ramped up again and has been steadily getting worse the last several days. The pain is sharp and throbbing—it also hurts to use my abdominal muscles. I saw my primary care dr. this past Friday, and he ordered an urgent CT scan. I had that done this past Monday, and the scan shows that the balloon on the tube is lodged in my abdominal wall (it’s called buried bumper syndrome). 😥 So painful, but I’m thankful for answers! I actually had this issue many years ago, and usually, changing the tube size helps. But we’ve already tried 2 different tube sizes in March which hasn’t helped. I don’t know if the tract got damaged or what.. My PCP messaged the surgery team twice now, but they’re not responding still. Ever since my general surgeon left OHSU 2ish years ago to practice in New Orleans, it hasn’t been a good transfer to a different team. 😢 In addition, the CT scan also revealed that I have ground glass opacities in my left lung, so I have to go through work-up for that as well to figure out the cause.. Aside from these latest issues, I’m praising God that my mitochondrial disease has been stable still!! So thankful for God’s grace and faithfulness. The day I got my CT results, I read this excerpt below from one of Joni Eareckson Tada’s daily devotionals, and it was like the Lord was speaking right to my heart. I hope it’s an encouragement to you. ❤️ “Present pain and afflictions tend to heighten future joy. When is peace the sweetest? Right after the conflict. When does a cold drink taste best? When you’ve become very thirsty. When do you appreciate rest the most? After hours of hard labor. When is joyful company most pleasant? After enduring long days of loneliness. The truth is, our recollection of past sufferings may one day enhance the bliss of heaven. Eternity with the Lord will be so much more heavenly to those of us whose faith has been tested, battered, and tried, time and again.” -Joni Eareckson Tada One more thing.. I’d really love prayers for my uncle (my dad’s older brother). He’s been very sick in the neuro ICU with serious issues. First pneumonia, then bacteria in his spine which later broke his back. He had a major spinal surgery but still can’t move his legs. 🥺 On top of that, his kidneys started failing, so he had to be placed on continuous dialysis. He also had to be put on a ventilator due to fluid in his lungs. Then, he still couldn’t breathe well, so he had to get a tracheostomy tube placed in his neck. 🥺 Despite all this, he and his family are so strong and trusting the Lord which is a huge testimony to all of us and to the ICU. Could you please pray for peace, strength, and healing over his body? I know he and his family would be so grateful for your prayers. 💙 P.S. I wish I could show you my foster nephew’s sweet face in this photo from Easter Sunday! He is now 9 months old—the most precious and adorable little boy!! Our lives are so much sweeter with him in it. 🥹
Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst
