What happened last week

Kerissa • February 14, 2014

Last week was tough.  For once, it’d be nice to have no adventures. ;P

Wednesday afternoon, I started experiencing a bad headache, but I wasn’t too concerned because I get migraines (they usually don’t last more than a day).  So I just waited for the headache to pass.  It was still there the next day, though, and I started struggling because of the pain.  My left drooping eyelid got especially bad.  And none of my usual nerve pain meds or Ibuprofen and Aleve touched the pain.  As I mentioned in my previous post, my neurologist wondered if I had a TIA or small stroke..  And so I headed to the ER.  Because of the snow, I couldn’t go to OHSU’s ER, and I hated that I had to go to a different hospital.  Long story short, that was a terrible mistake because this particular ER didn’t know “me” and my complicated medical history.  They didn’t even do a full neurological exam.  All they did was give me one hydrocodone/acetaminophen tablet.  They sent me home.

The next day, the headache pain was so bad.  I couldn’t eat much because of the nausea.  I started having balance issues and was also dealing with new right hand weakness.  So this time, my parents and sister drove me to OHSU’s ER.  This hospital is so awesome (it’s #1 in the state of Oregon ;).  They got me a room right away.  They did labwork and gave me lots of IV pain and nausea meds.  People with EDS are prone to aneurysms and strokes, so the doctors were concerned that maybe I did have something like that.  They ordered two emergency MRIs which I had done there in the ER.  Thankfully, the scans were clean!  The doctors told us I was probably dealing with a “complicated migraine” which is not just a simple migraine.  They’re complex and can cause weakness/neurological issues.  They gave me IV toradol for pain, but that unfortunately didn’t help.  So they put together a “migraine cocktail” you could say.  An IV magnesium drip, Reglan for nausea, and IV benadryl which has been shown to reduce pain.  My pain went down from a 9 to a 5, and my drooping eyelid improved.  We were in the ER for 8 hours.  But we arrived home at 2:45 AM, and I slept till 4 PM the next day!

The adventure wasn’t finished. ;P  I woke up because my blood sugar dropped very low (a bad issue associated with mitochondrial disease).  My heart was pounding, I was shaking, sweating, and extremely weak.  I laid on top of our stairs, unable to move.  My mom had to quickly spoon feed me grape juice to get my blood sugar back up.  It was hard for me to even suck from a straw because I was so weak.  I had to sleep a lot after that, and it was too exhausting to even watch a movie.

That episode on top of two ER visits did me in, and I’m still trying to get better from this weakness.

So that’s what happened last week.  How was your weekend?

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. ❤️