Under the weather

Kerissa • December 8, 2016

Hey friends,

Just a short update.  Since the day after Thanksgiving, I’ve been sick with low-grade fevers, a painful sore throat, swollen glands, a barking cough day and night, and terrible fatigue.  The doctor thought at first that it was a bad virus, but now he believes I have a bacterial infection in my throat (basically “strep,” but caused by a different bacteria…not the streptococcal bacteria).  He said I’m immunocompromised….this is because of mito. So he prescribed a week’s worth of antibiotics and codeine cough syrup.  Still not feeling any better yet, but it might take several more days..  I’ve been completely exhausted.  I just don’t have enough energy in the first place to fight these types of things.

I had a follow-up with my GI specialist last week.  The end of this month marks 2 whole years of being on TPN (IV nutrition).  So hard to believe.  We talked about taking a TPN break, but after much discussion, it’s just not really possible at this point because of my bad hypomagnesemia (he said “I’m the black hole of Magnesium….”), low blood sugars, continued GI dysmotility, and other problems from mito. I’m disappointed but will keep persevering and trusting in God’s sovereignty.

I’m really trying to increase my tube-feeding and not just do it one time a week…  If I can eventually receive a large enough volume total each day, then we can maybe talk about a TPN break!

I had a bilateral lumbar sympathetic nerve block scheduled this afternoon, but I had to cancel it because I’m coughing way too much. God in His providence worked things out, tho!  My pain dr. had to reschedule anyways, and it got moved to next week.  So thankful I don’t have to wait many more weeks for it to happen.

In addition to the nerve block, I have a lot of appointments coming up with Palliative Care, Neuro-otology, Internal Medicine, Nephrology, and Physical Therapy.  I’ve had to cancel PT for 2 weeks now.  My hip and muscles are all super weak from being sick…progress keeps getting set back.  But I’m so grateful for my therapists who continue to work with me, despite my complex medical case!

Until next time!  Have a wonderful and blessed Christmas, friends.

 

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