Long overdue update

Kerissa • September 26, 2014

Hello friends,

I’m sorry it’s taken me so long to post.  My weeks have been filled with doctors appointments and therapy, and I’ve been needing to sleep past 2 pm some days!

I just wanted to thank all of you who purchased through my Etsy shop!  It encouraged me so much.  It has definitely helped lighten my huge medical bill pile.

Warning: this will be a long medical update!

I haven’t been tolerating j-tube feeds very well, and the gastroparesis has been causing a lot of stomach pain (all organs need energy to function….because of mito, my stomach isn’t getting enough energy, so the food I eat just sits in my stomach or moves very slowly).  I saw my GI dr. on Monday, and he set up a new plan.  He’s such a wonderful doctor!  He put in a new tube feeds order to see if a less calorically-dense formula will be better tolerated.  He also mentioned I could be dealing with Small Intestinal Bacterial Overgrowth (SIBO), but we will try this first.  Regarding the abdominal distention from the gastroparesis, he wants me to do a trial of increased j-tube feeds and less eating orally (by mouth).  That’s a big step, but hopefully it will only be short term!  I won’t be starting this yet until I get the new formula and until I can switch feeding pumps.  My current pump is quite heavy and makes it difficult to carry (because of the muscle weakness) so his staff is contacting other companies for a lighter one.

Unfortunately, my neurogenic bladder has been getting worse, and my GI surgeon explained how my kidneys could die if I don’t get this treated.  Wasn’t expecting her to say that!  She put in an urgent referral for me to see a neuro-urologist at OHSU.  That appointment’s still a month away because she only works part-time and this specific dr. is the one I need to see.

I had a follow-up with my PCP today, and she’s referring me to a cardiologist at OHSU who specializes in arrhythmia because I’ve been dealing with high heart rates, excessive night sweating, and heart fluttering.  That’s how bad mito is.  It basically affects every body system!

Last week was Mitochondrial Disease Awareness 2014, and I didn’t get a chance to blog, so you can consider this my awareness post.

P.S. The mito conference in Seattle two weeks ago was amazing!!  I’m so thankful for all the specialists studying this complex and extremely challenging group of diseases.  My mito specialist was there as well, and I was able to say hi to him.  He told me that I’m a conundrum (medically)…that’s never good news.. :/  I asked him if he remembers me from June (he sees a ton of patients), and he said, “Of course I remember you!”

A neurologist who trained under an excellent mito specialist at Seattle Children’s is now practicing at Legacy Emanuel’s Randall Children’s Hospital in Portland, and she’s trying to get approval to open a mito clinic.  She also hopes to see older kids and adults as well!  She took my contact info, and I’m to call her office about all this within 6 months.  Oh that’d be so wonderful to have a local mito specialist!  This would technically be the first mitochondrial disease clinic in Oregon!

In front of the Bell Harbor Pier and conference center
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