Reflections on the year 2022

Kerissa • January 2, 2023

Hi, friends, I cannot believe another year is over. As we all say goodbye to 2022, I wanted to share some of this past year’s highs and lows.❤One of the biggest blessings is that I didn’t have one single hospitalization, ER visit, mito crash, or surgery in 2022 (my longest streak ever!)—all the glory and praise goes to the Lord, and I am truly grateful. So so thankful. 🥹🥹 His goodness and grace has been so evident this year. I thank God for this long break as hospital stays, ER visits, and the like are such heavy burdens. After working really hard every week with my physical therapist, another “high” is that I don’t have to use my wheelchair when going places sometimes—for example, I can now walk/shop in a grocery store (like Whole Foods) which makes me soo happy!☺

Some of the lows this year…. I previously posted how I have an eye disorder called Chronic Progressive External Ophthalmoplegia (in other words, eye muscle paralysis) associated with my mitochondrial disease. For many years, I slowly lost the ability for my eyeballs to look different directions, but my eyes were always able to look to the right. Well, I suddenly lost that ability which made me really sad.Having this eye disease puts things in perspective and makes me so thankful that I still have eyesight and can move my neck/head to look around! Another low is that I got diagnosed with chronic intractable migraine with status migrainosus. According to my headache neurologist in Seattle, he noted these daily, severe migraines are due to “mitochondrial disease progression.” They are very disabling, but I’m currently trialing a combination of medications and supplements.

I could keep going on about all the good and bad things that happened in 2022, but it’s much too long to write about!Each month, I saw and continue to see how God is faithful in the happy AND the hard. It’s easy to trust Him during the fun times…when things are going the way we want it to. But I was reminded this past year that I can also trust Him in the rough/hard times—He has a purpose for my pain. Romans 8:28 says, “And we know that for those who love God all things work together for good, for those who are called according to his purpose.”

Maybe you’re thinking, “How do we trust that His promises will come true?” Well, Randy Alcorn sums it up perfectly: “There is always much we can’t understand in life, but the better you know Jesus, the more you realize that He is trustworthy even when things don’t seem to make sense.” What a timely reminder that we all need: His character proves that He is faithful and trustworthy. And that’s what I’m clinging to as we start 2023. I don’t particularly like New Year’s Day because it’s always a little scary for me since I don’t know what’s around the corner or what new trials will come my way… But the Lord does, and I’m so thankful He knows what I can’t see. So, happy new year, friends. In 2023, may we all keep our eyes fixed on Jesus, the author and perfecter of our faith!❤

Letter to my GI specialist 💚

By Kerissa Lee • March 31, 2026
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

J-tube update

By Kerissa Lee • March 17, 2026
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst

Please pray ❤️

By Kerissa Lee • March 7, 2026
Hi, friends, I would really appreciate prayer. Some of you already know this, but at the end of January, I started dealing with an abdominal abscess right next to my j-tube. I looked back through my records, and that was my 6th abscess. :( Since then, it’s sadly been one issue after another. I won’t go into all that has happened, but I’d especially love prayer for my j-tube site. After the abscess, I had my tube changed to a new one on 2/27. The surgery nurse practitioner decided to try the next size up to see if it could possibly decrease some of the leakage, but unfortunately, that was the wrong decision. It’s too large, so now the site is leaking tenfold compared to my previous size. The small intestinal fluid that keeps leaking out around the tube is full of acid which is burning my skin and making it raw. 😭 If you want to know what it feels like, imagine having a bad burn on your skin…then, on top of that, imagine acid being poured onto the burn every hour continuously. That’s how much pain I’ve been in, and I haven’t been able to sleep very well until after 6:30-7 AM each night because the burn is so intense! :’( I could cry, and I have—that’s how bad the pain is… I would show you a picture of the site but it’s not pleasant. 🥺 I’ve been emailing the nurse practitioner every single day, asking to have the tube changed back to the previous size. She hasn’t been helpful. I’ve tried all of her recommendations, but they aren’t fixing the root cause. I had to get an x-ray with contrast earlier today to check tube placement. If she does eventually agree to have the tube changed, I don’t know how I’ll bear the pain of the procedure… Remember, they don’t use sedation for these procedures (my GI specialist is shocked they don’t!), and even though I’ve been asking for lidocaine to be injected for past tube replacements, how do I bear to have needles pushed into such raw tissue?! 😭 Please pray that I will be courageous and strong in the Lord. I think of the verse from Philippians 4:19, and it’s comforting: “And my God will supply every need of yours according to his riches in glory in Christ Jesus.” He will grant me the peace and strength I need to be brave. His grace is sufficient. ❤️