April 15th…a date near or far?

Kerissa • February 14, 2013

Well, it’s official!  Or, I guess I should say “half-official.”  April 15th is the tentative date for my first appointment at Cincinnati Children’s!  *small sigh*  I am grateful that I can see them sooner than July (we were told at first that the EDS clinic is booked until July, but they have been trying to work things out which has been a challenge for sure), but April 15th is still over 2 months away and I’m not feeling any better.  So my neurologist is gonna try to be in touch with their physician priority line to get me in even sooner, but first I’m waiting to hear the names of the doctors I’ll be seeing as she needs names as well as the phone number.

Updates:

Head: My headaches have still been very bad.  I have to use an ice pack every now and then again since pain meds don’t help.  I’m very thankful for ice. :o)

Eye: My left drooping eyelid is still there, but sometimes people don’t even notice it which I’m very glad about!

Neck: I saw my spine dr. a few weeks ago and had flexion/extension x-rays of my cervical spine again.  In addition to anterolisthesis (vertebrae slipping forwards onto each other), I now have retrolisthesis (vertebrae slipping backwards) also.  On another note, my atlanto-axial instability is still mild thankfully, so I don’t have to see him till January.

Shoulders: My right shoulder is still pretty loose and my shoulder blade pops out often, so my physical therapist wants me to see him twice a week now.  My left shoulder is starting to become a problem since it has to work more than my right..

Heart: Lately I’ve been experiencing a lot of chest pain.  I’m not sure if it’s because my heart is always tachycardic (POTS issues) or if something else is going on.  Praying that the EDS clinic will be able to find the answer.

Hip: Since my left leg muscles are weak, they’re not able to hold my hip securely, so I’m now having lots of aching pain/crunching/popping.  It makes walking painful!

Feet: This week the CRPS pain in my feet has unfortunately been increasing, but the lumbar sympathetic block I had on Jan. 30th gave me about 2 weeks of less pain so that’s a praise!

I know I look “normal” on the outside, so I just wanted to give you a little picture of what’s going on inside my body.

Stay tuned for more Cincinnati news!

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. ❤️