Monday, June 24, 2013

Introduction

5 years ago now (wow), I was traveling in Kazakhstan to adopt my son and I came down with a really bad flu.  It developed into Guillain-Barré syndrome.  The GBS symptoms were clear once I know what they were.  Numbness and tingling (at the same time) in both the fingers and toes, and weakness in arm and leg muscles.   It's an autoimmune disease that attacks the lining of your nerve cells so the signals from your brain escape and cause pain, rather than making it to your muscles.

I'm hoping to tell bits of my story that might help others get through their journey.  I want to preface this whole story with the fact that I've made a full recovery, with no lingering side affects and no noticeable weakness.  I hope that some of the things we did can help others with their recovery.

Luckily we had traveled back home from Kazakhstan before the flu really developed and I was at home, very weak, barely eating and then noticed something odd.  My toes had started tingling.... and then later my fingers as well.  I was also having trouble walking, but figured it was just because I was so weak from this nasty flu.

A couple days passed and I kept getting weaker.  Finally I was having terrible pain in my back on Friday night and we finally went to a 24 hour clinic to have it checked out (which I have actually never done, so I know it was bad).  They weren't positive what it was, but recommended I go to the ER.

When at the ER I was diagnosed with Bronchitis, given some pain meds (
Percocet) and an inhaler and sent home.  (Later, I wished I was more insistent on my symptoms, as I think they were so busy in the ER they missed it, whereas the clinic had noticed the GBS symptoms!)  I was actually able to sleep some on Saturday night because of the Percocet, but the pain relief only lasted about an hour (more on that later).

Sunday the GBS symptoms got even worse and I could barely walk to make it to the bathroom.  At that point we hobbled to the car only just making it and drove down to the ER.  This time there was no waiting as I couldn't walk by the time we got there and they came out to the car and pulled me out and immediately took me inside.  I had intense pain in my abdomen and asked for pain meds and they gave me morphine which did nothing for my pain.  They gave more until they said they couldn't give me any more.  It had no effect.

Turns out my body metabolizes away most pain meds.  After thinking about it I remembered when I was 15 and had my wisdom teeth taken out.  They tell you to count down from 10 and I made it all the way to 1.  This puzzled them and so they gave another dose and count down from 10 again.  Again I made it all the way to 1.  It took a third dose to finally put me out.  I weighed 110lbs and they had given me the dose they'd give a 300lb person!
I think I finally passed out from the pain, or they finally got me sedated... I don't know which.  But I was admitted to the ER and later moved to the ICU.  They didn't yet know what it was, but they knew it was bad.   My journey with GBS had begun.

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