First post of the new year!

Kerissa • January 10, 2014

The day after Christmas, I had my first speech language pathology appointment with the swallowing clinic at OHSU.  The therapist wanted me to get a FEES study (fiberoptic endoscopic evaluation of swallowing) done to take a look at my vocal cords, etc.  For the 5th time that month, I had to go through yet another tube insertion through my nose…!  Those hurt so bad. >.<  Hopefully that will be the last for a long time..

Here is a video of my vocal cords moving in real-time.  But only watch if you like that kind of medical stuff.  I hope the video works…I know a few of the pictures in my last post didn’t show up!  If you do watch, that arched structure is my epiglottis, and those white-ish things are my vocal cords. lol  Pretty fascinating!

This past Monday, I had my first modified barium swallow study and another esophagram. 

Tuesday I began physical therapy again—I’m now seeing a new therapist at OHSU, one who specializes in neurological/neuromuscular diseases. Next week, Lord willing, I get to try this new contraption, sort of like a robotic leg.  He wants to see if this will help me walk more easily with my left-sided weakness. Sometime in the future, he is also going to have me try these leg braces that will hopefully make walking easier as well. I’m excited to try both!


Yesterday, I saw an allergy/immunology dr. For the past several years, I’ve been getting big canker sores in my mouth almost every other week.  I had a very extensive allergy test to see if any foods are the cause of them. Thankfully, I’m not allergic to wheat, dairy, citrus, etc. I’m so glad. I am very allergic to all kinds of trees, grasses, molds, pollens, etc. During the test, I developed huge hives and swelling all over my arm! It was horrible! I’ll spare you the gross pictures. 


Since food is ruled out as the cause of my canker sores, he’s now not sure what’s going on. Maybe it’s because I have Ehlers-Danlos Syndrome and my connective tissue is not strong.. ?


Next week, I have speech therapy for my voice/swallowing issues, physical therapy, and a follow-up appointment with my physical medicine doctor!



P.S. 5 of my doctors (my spine surgeon, physical medicine doctor, GI specialist, sleep medicine dr., and even my podiatrist. lol) made Portland Monthly’s Top Doctors issue for 2014! Almost all my other doctors made the top docs list in 2013. I really am so blessed with such great medical care! =)

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