Progressive weakness πŸ’”

Kerissa Lee • December 13, 2024

"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken."

Psalm 62:2




Hi, friends,


It’s been more than a month since I last posted, and I’m sad to say that my symptoms have gotten much worse.


If you missed the update, this new weakness and pain put a lot of stress on my body, to the point that I went into another rough mitochondrial crash. The week before Thanksgiving, I was directly admitted to the hospital for 7 days due to nausea, vomiting, increased pain, nystagmus, very droopy eyelids, and more..


My “mito crash” symptoms thankfully resolved after receiving continuous IV dextrose and IV levocarnitine. The hospitalist (one of the most compassionate doctors I’ve ever met) also ordered the IV steroid dexamethasone to see if it would help this unusual muscle weakness in my neck, and it did! That was an answer to prayer, but, several days after getting discharged, my neck weakness started worsening again. 😭  We’re not sure if it’s due to the steroid wearing off?


It’s now difficult to lift my head off the pillow when lying down. I truly took for granted how vital the neck muscles are for any type of movement. πŸ₯Ί  I so miss being at my “normal” baseline and doing basic things like grocery shopping or even vacuuming. I also really miss creating hand lettered art like my old Christmas piece above from 2 years ago. 😒  Are you familiar with the “plank” exercise where you try to lift your abdomen off the ground horizontally as long as possible? Well, I’ve been in so much pain because it feels like I’m always doing a “plank” exercise but with my neck—it constantly aches and burns. 😭


3 of my doctors have all tried to refer me to neuromuscular neurology locally for this new weakness, but the referrals have been rejected each time. No one wants to see me due to my mitochondrial depletion diagnosis. 😒  So I emailed my neuromuscular specialist up at the University of Washington Medical Center and told him all about what’s happened. By God’s grace, my doctor moved up my appointment with him from March ‘25 to January ‘25 which is so caring and compassionate of him, especially since I haven’t seen him in more than 2 years. πŸ₯Ή  Even more amazing is that he completed a fellowship in neuro-immunology at the NIH and specializes in inflammatory muscle disorders. His expertise in this area is an answer to prayer since my immune system seems to be attacking my muscles (based on a lab result that came back showing antinuclear antibodies in my blood)..


It’s been an incredibly difficult and scary time, and it’s even harder because all this is happening during the holidays. I often feel so alone, having to be bed/recliner-bound and miss out on so much. πŸ₯Ί


But, despite all this, I’ve seen firsthand how God is still on the throne and is quietly working behind the scenes. Deuteronomy 31:6 and 8 has been an encouragement to me where it says that God goes with me and before me. This path is so painful, but I’m trying to remind myself that it’s not without its purpose. I may not know why this is happening right now, but I do know God is with me and will never leave me nor forsake me. ❀️


My primary care dr. is out on paternity leave until next month, so I saw his colleague yesterday. She was so kind and also very knowledgeable. She ordered the same steroid I received in the hospital to see if it will help this worsening neck weakness. If it is beneficial, she said that’s a great diagnostic tool because it tells us there IS something inflammatory going on in my body to cause this weakness..


Could you please pray that the steroids will help and also hold me over till I see the neurologist next month? If it doesn’t help, she said I may have to get directly admitted again.. πŸ˜”


Could you also pray that my neurologist will be able to swiftly diagnose the issue and come up with a plan for treatment?


Pray that I (and my family) will trust the Lord through all this uncertainty and keep an eternal perspective. It’s so hard not to worry, but I’m so grateful for all of your loving prayers and support during this trial, friends.   Merry Christmas! β€οΈπŸŽ„


By Kerissa Lee • October 31, 2026
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!! πŸ₯Ή 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! πŸ₯² 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! πŸ’š 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. πŸ₯° 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. ❀️
By Kerissa Lee • August 21, 2026
Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! πŸ’š 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! πŸ₯Ή 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)! πŸ₯° 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.. ο»Ώ
By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1