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!❤

By Kerissa Lee January 21, 2025
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. ❤️
By Kerissa Lee December 13, 2024
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
By Kerissa Lee November 9, 2024
“Be still, and know that I am God.” -Psalm 46:10 
Share by: