Needing patience..

Kerissa • May 15, 2013

I’ve been on crutches for 8 months now. 8 months. When I was on crutches for 6 months back in 2011, it was kinda exciting (it being the “first” time). But now….not so much. They’re getting to be a real nuisance. I wish I could go back to the “good” ol’ days when I had my spinal cord stimulator and could walk and run! I sure miss my SCS! But….I know God has a good purpose with all of this, so I’m gonna trust Him. He knows best. And I do thank Him for all that I’m learning through this trial.

This year, it’s been getting harder to use crutches for long distances because I’ve been so fatigued and this left-sided weakness is worsening. Sooo, guess what? This girl is gonna get her own wheelchair! I never thought I’d want one or even get to this point, but I really want to go to places (more easily) like the mall or the library. I still hope I don’t have to use one for very long, but in the meantime, I’m excited! It’s going to be a fast, lightweight wheelchair (not a heavy hospital one ;). Maybe I’ll be a wheelchair racer. I have an appointment at the OHSU seating clinic on June 5th. I’ll get measured there by a physical therapist and wheelchair rep.

Next week, I have an appointment with my pain dr. I haven’t seen him since January! Can’t wait to hear his thoughts on what the doctors in Cincinnati think.

To my great disappointment, Seattle Children’s mito program called to tell us that they are booked until October. And since I’ll be 21 then, they won’t be able to see me. They gave some names of doctors who have mito patients, but even this certain neurologist at University of Washington is booked out as far as October, too. There are very few mitochondrial specialists in the nation, so I’m not sure what we’re going to do.. I found a dr. in Texas who runs a mitochondrial center. She said she could see me within a month or two. But….Texas is still pretty far away. At least I can keep her in mind. I still haven’t done the autonomic nervous system testing but hopefully within the next two weeks!

I’d appreciate prayer for patience. I guess you could say I’m getting a little weary of this journey.. I have a really hard time waiting! But then I look at these pictures below and am in awe of God’s wisdom and power (in creation and in my life). He has a perfect plan, and his timing is just right! So until this journey is finished, I will keep pressing on!

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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. ❤️