Neurology and physical therapy updates

Kerissa • November 16, 2016

“Pain is a forest we all get lost in
Between the branches, hope can be so hard to see
And in the darkness, we’ve all got questions
We’re all just trying to make sense out of suffering, but

You say I am blessed because of this
So, I choose to believe
As I carry this cross, You’ll carry me…”

~Carry Me by Audrey Assad

Hey friends,

Just a short update.  Thank you all for continuing to pray for me!  I know I’ve said this before, but you are a huge encouragement!!

It has now been more than 3 months since my hip surgery….  Physical therapy progress is still very very slow because I’m not just the typical orthopedic surgery patient.  I have muscle weakness from mito on top of that.  I also have hypermobility and loose joints from Ehlers-Danlos Syndrome.  Hypomagnesemia (low blood Mg levels) complicates things even more since it affects muscles. The ultrasound-guided hip steroid injection helped the pain somewhat, but my physical therapists can still tell my hip joint is inflamed.  We continue to push through, though!

I had a follow-up with my neurologist on October 31st, and she spent 1 1/2 hours with me!  Very thankful for her and how she continues to see me even though I’m over 21.

She said I really need to be seen by a geneticist who can look through all my genetic variants and sort things out even better.  She’s going to try and get in touch with the mitochondrial geneticist in Pasadena, CA (the dr. that I met at the UMDF symposium this past June) to discuss my case and see where I am on his waiting list.

We also talked about my daily headaches.  Although it seemed to be helping, the new medication my pain dr. started me on caused too many side effects.  And when my neurologist heard that I was taking this particular med, she got concerned.  Because of a CHAT mutation I have, I’m supposed to stay away from anticholinergic medications, and guess what, that med is anticholinergic. So my pain dr. slowly tapered me back off of it.  I did hear from her today and will be starting again the previous med I was taking.  It didn’t help a whole lot, but anything is better than nothing…the burning pain in my hands and feet has been so terrible!  They’re on fire.

My neurologist increased my CoQ10 and Riboflavin, but unfortunately, the headaches are still bad.  So we did discuss trying a very strong anti-seizure med that is also used for headaches.  If I do start it eventually, I need to first get clearance from my nephrologist because it can cause metabolic acidosis.  She also said that it can make you “feel stupid” in that your brain gets cloudy and you can’t think well… : /  But she did say this is most noticeable with the dosage for seizures (which is much higher than the headache dosage).  If I try it next month or so, I hope I don’t experience either side effects!  I just would like a break from these chronic headaches because it’s rough on top of all my other symptoms.

This will be my last blog post until December because the rest of this month is super busy with Thanksgiving, continued physical therapy appointments, and follow-ups with Pain Medicine, Orthopedic Surgery, and GI.  I’m also planning on selling jewelry from my Etsy shop  at my church’s annual Christmas boutique this coming Saturday.  It will be my 3rd time!

I just want to close with this beautiful verse I read from Isaiah last week.  So uplifting and refreshing.  The Lord always goes before me and carries me through the pain!

Happy Thanksgiving, friends.

“In all their suffering he also suffered,
     and he personally rescued them.
In his love and mercy he redeemed them.
     He lifted them up and carried them
     through all the years.”

~Isaiah 63:9

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!! 🥹 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! 🥲 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! 💚 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. 🥰 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! 💚 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! 🥹 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)! 🥰 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.. 
By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1