Keeping the Faith

Kerissa • January 29, 2014

This recent article makes me happy. :]  It’s pretty much the only happy news in this post. lol


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I saw my GI specialist on Monday.  As of now, I don’t have to alter my medications for all the GI stuff, but I’ll follow up with Dr. P again in 3 months or so.

Thursday I have a return appointment/x-rays with my spine dr. to check up on my cervical spine instability from the EDS..  Every time I get a new set of x-rays, there’s been a slow increase in vertebral slippage, so we’ll see how it is now.. :/

Trying not to stress or grow discouraged about it, but starting last week, I’ve been losing my grip in my right hand.  *sigh*  Seriously, something new always comes up every 2-3 months!  It’s hard to explain, but this seems more than just weakness.  For example, I was holding my phone in my right hand the other day, and I suddenly dropped it on our hardwood floor because my grip didn’t stay.  Another time last week, my mom trimmed my bangs, and I held newspaper underneath to catch the cut hair.  My right hand grip of the paper suddenly let go.  It’s as if my brain is not sending signals to my hand…  My neurologist is usually booked out months in advance, but by God’s grace, she has an opening two weeks from today.

I hate that my case is always so complicated. :[  I’ve never had something as simple as a broken bone….I don’t have a common disease like arthritis or diabetes or heartburn.  Instead I have disorders people have never heard of—all my genetic mutations are associated with diseases like distal hereditary motor neuropathy, central core disease, charcot-marie-tooth disease, minicore myopathy, malignant hyperthermia, mitochondrial disease, and many others.  What makes things worse is that they’re all similar in nature.  And THAT’S why I’m a hard case for my doctors.

And IF this new symptom is related to distal hereditary motor neuropathy (a motor disease of the spinal cord) or the like, pray that I won’t go crazy from all these countless diagnoses.  Serious!


“It seems like there’s so much to hope for
So many dreams I wish they all could come true
But when I think about Your ways, Lord
It gives me so much faith in all that You do

Faith to see beyond what I can see
Faith to know that You will do great things
I will trust You, Lord, I’ll always believe
As I hold onto my faith,
Jesus, You are holding onto me”
~partial lyrics from one of my favorite songs

Letter to my GI specialist 💚

By Kerissa Lee • March 31, 2026
Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa

J-tube update

By Kerissa Lee • March 17, 2026
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst

Please pray ❤️

By Kerissa Lee • March 7, 2026
Hi, friends, I would really appreciate prayer. Some of you already know this, but at the end of January, I started dealing with an abdominal abscess right next to my j-tube. I looked back through my records, and that was my 6th abscess. :( Since then, it’s sadly been one issue after another. I won’t go into all that has happened, but I’d especially love prayer for my j-tube site. After the abscess, I had my tube changed to a new one on 2/27. The surgery nurse practitioner decided to try the next size up to see if it could possibly decrease some of the leakage, but unfortunately, that was the wrong decision. It’s too large, so now the site is leaking tenfold compared to my previous size. The small intestinal fluid that keeps leaking out around the tube is full of acid which is burning my skin and making it raw. 😭 If you want to know what it feels like, imagine having a bad burn on your skin…then, on top of that, imagine acid being poured onto the burn every hour continuously. That’s how much pain I’ve been in, and I haven’t been able to sleep very well until after 6:30-7 AM each night because the burn is so intense! :’( I could cry, and I have—that’s how bad the pain is… I would show you a picture of the site but it’s not pleasant. 🥺 I’ve been emailing the nurse practitioner every single day, asking to have the tube changed back to the previous size. She hasn’t been helpful. I’ve tried all of her recommendations, but they aren’t fixing the root cause. I had to get an x-ray with contrast earlier today to check tube placement. If she does eventually agree to have the tube changed, I don’t know how I’ll bear the pain of the procedure… Remember, they don’t use sedation for these procedures (my GI specialist is shocked they don’t!), and even though I’ve been asking for lidocaine to be injected for past tube replacements, how do I bear to have needles pushed into such raw tissue?! 😭 Please pray that I will be courageous and strong in the Lord. I think of the verse from Philippians 4:19, and it’s comforting: “And my God will supply every need of yours according to his riches in glory in Christ Jesus.” He will grant me the peace and strength I need to be brave. His grace is sufficient. ❤️