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!
 

Surgery Update 😊

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.. 

August 6th Surgery Prayer Requests 💚

By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1

Another surgery 😞

By Kerissa Lee • July 25, 2026
Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul