Day 29- The Faces of Guillain Barre: Gina's Story

Sunday, May 29, 2016 0 Comments
My story began on a Monday at work when the skin on my arms started bothering me.  I recall telling a coworker that "just having my dress touch the skin on my arms was hurting."  I thought it was because a new dress, thinking it was the fabric.  I went home that evening, went straight in to take a shower, and sat on the couch.  My husband said I felt hot, took my temperature and said it was 101.5.  I emailed my supervisor and called off for the next day.  

That morning, I slept until 11:30.  I couldn't recall the last time I slept that long, but immediately knew something was wrong.  As I tried to get up, I had a "floating" sensation.  I couldn't feel my feet touching the ground and made my way to the couch by holding on to furniture and walls.  I sent a message to my husband, who was an hour and a half away, and told him I was going to call my son to leave school and take me to the E.R.  He told me to wait - that he would leave right away and be there as fast as he could.  While I waited, I googled symptoms and messaged my sister (the family researcher).  By this time, I noticed that the left side of my face was drooping, so stroke was one of the things on our list of "maybe's".  Guillain-Barre was also on that list. 

I was immediately admitted when I got to the E.R., was completely paralyzed within 24 hours and honestly - the next three weeks is a blur.  The pain, and the frustration of not being able to move and not having a diagnosis was enough to make me want to give up.  It was two and a half weeks (after the second spinal tap) before all other possibilities were ruled out and I was diagnosed with GBS.  I was immediately given IV Immunoglobulin and began to turn around.  I never had to get a tracheotomy. One of my brothers sat at my bedside and focused on two things - straightening my fingers and making me breathe into that tube.  I came close, but that was a bullet I am thankful to have dodged.  

I only spent a week in rehab.  I did my morning OT and PT, napped, did band workouts in my room, napped again, went back to the workout room at night, and napped some more.  Thankfully, I had been going to the gym often prior to my hit with GBS because I credit my weight-training classes with my quick recovery - it is amazing how fast muscles atrophy; if I could tell families of future GBS patients one thing, it would be to work their legs and arms while they are in the hospital (preferably right after a dose of morphine)!  

I recovered at home for the next couple of months - doing OT and PT on my own and a lot of yard work.  I hit my one year last month and am still only working part time.  I take 400 mg of Gabapentin and 50 mg of Tramadol at night, when my leg, feet, and lower back pain are the worst.  I will never be full time - chronic fatigue sets in after only a few hours of mental work.  I can walk for long periods of time and do other hobbies for hours, but nothing tires me out like focusing mentally.

6 months post GBS

I am about as good as I'm going to get and I'm okay with that.  It has been and will continue to be a long journey and I hope that all who struggle with the after-effects of GBS find comfort in groups like this.  I certainly do and I thank you, @thegimpygirlwhocould for putting this effort together.  We are a very small community and I have found comfort and a sense of belonging through reading everyone's journey.