Medical Update

Kerissa • March 8, 2021

Hi friends,

*If you’re wondering why there are random bullet points, my website had an update, and when I press the “enter” button to make new paragraphs, it doesn’t seem to work. So using bullet points is the only thing I could think of to make spaces in between paragraphs.😅

Anywho, I just wanted to thank you again SO much for your love, prayers, and encouragement these last several weeks. I hope I don’t sound like a “broken record,” but I truly am so grateful for you and your prayers as they helped me through that rough hospital stay.❤

For those who may not know, I had to go to the ER (and was later admitted to the hospital for 8 days) because I was experiencing sudden and severe vomiting and dry heaving. It was so so horrible to go through. :’( I became very dehydrated because I couldn’t keep anything down, not even my important medications. We pushed small amounts of juice through my j-tube (it’s times like these that I’m extremely thankful for my j-tube!), but I was still getting worse, and my parents had to call the ambulance.

The doctors are still not exactly sure what started all of this (could be a viral gastroenteritis?), but whatever it was caused acute hepatitis. My liver enzymes were 10 times the normal range.🙁The doctors ordered a bunch of scans, and we also found out from the results that I have gallbladder sludge and gallstones. My bile duct is only 3 mm, and one of the many stones that I have is 8 mm. That’s gross.😟Because it’s pretty large, the stone is not able to come out of the bile duct, so pressure is building up and dilating my gallbladder. Anyways, I’m not stable enough to have it removed, so my GI specialist started me on a medication to try and dissolve the stones. He’ll reassess with another liver ultrasound in 6 months to see if the medication is working.

I mentioned this on Facebook, but after my last 10-day hospital stay in September, my physical therapist and occupational hand therapist both worked so hard with me to strengthen my muscles as I was very weak from that mito crash. Well, the muscle weakness is bad from this recent hospital stay, so it’s hard that I pretty much have to “start fresh” again with physical therapy and occupational hand therapy.

On top of all this, I wrote in my previous post how I’ve been experiencing pain in both wrists/hands. I saw the orthopedic hand specialist, and I got diagnosed with De Quervain’s Tenosynovitis.😔I’m more prone to it because I have Ehlers-Danlos Syndrome. So I most likely have to have wrist surgery on both hands (and sadly they can’t be done at the same time). I see the OHSU hand surgeon on March 9th to talk more about everything. The hand pain is so bad, and it makes it difficult to do “normal” things….I miss hand lettering terribly (the piece above is an old one).😢

God has been using these new trials to teach me to depend on Him fully and trust Him. I read this prayer the other day, and it’s been on my heart ever since: “Do not waste my greatest sorrows, O God, but use them to teach me to live in your presence—fully alive to pain and joy and sorrow and hope—in the places where my shattering and your shaping meet.” ~Every Moment Holy ❤

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 
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