Riding on Faith

Friday, February 19, 2016 1 Comments
Put on a blind fold, and spin in a circle 20 times... get hit by a bus & poked with branding irons... that's the best short version that I can sum up my experience with Guillain Barré.

This will be where I document my journey with Guillain Barré Syndrome. Be warned that there will be a lot of rambling and mostly likely a lot of things repeated because everything tends to blur together... Other things will be hard to read and some pictures hard to look at... One thing I promise to do and to be on this blog is real.

 I will do my best to break down my journey to multiple parts and cover the things that helped me or I went through.

I've had a hard time finding the motivation to write down my story because it's hard to relive... But I think it's worth being told. I would do anything to help another GBS patient or loved one and that's why I'm starting this blog. I know that there is a lack of information on Guillain Barré and I'm trying my best to help fill that void.

In this past month I have had countless articles about the possible link between GBS and the Zika Virus come across my newsfeed on Facebook. 

The huge rise of GBS cases around the world takes my breath away and hurts my heart. I have a sense of what those people and families are going through and I wouldn't wish it on anyone. Living minuet by minuet for months not knowing what was going to happen. What the doctor was going to say that day, what new infection or problems would come up.

Every case of Guillain Barré is different and because of that it's hard to get a doctor to talk about what's going to happen because they truly don't know. I was lucky enough to have an amazing medical team. Everything happened so fast. I honestly never imagined that I would be completely paralyzed- eyes and all (except my thumbs) 72 hours after I got a droopy eyelid. 

Rocking the Quazie Moto (spelling) look the first day of symptoms. Typically for GBS symptoms begin from the feet up but I was face down... I apparently have to be different in every way possible.

Right after I was intubated- 72 hours after my first GBS symptoms.

But it didn't stop me from texting until my eyes completely shut and I couldn't hold my phone any longer. I held on to it as long as I could... That was my last way of getting words out for 3 weeks... And we know how much I like to talk.

When the world started spinning and they were rushing me to the ICU to be intubated my neurologist told me that everything was going to get really bad and scary... But I was going to be ok. I was going to live and I would recover to 90-100%... Those words saved me. I honestly thought I was going to die 3 times. In those times, his words would pop into my head, I would try to calm myself down by saying a prayer and then saying random lyrics or quotes and singing songs... Mostly Disney- I'll tell ya, I totally rocked the entire Frozen sound track in my head. I had it playing in my car before I got sick so I knew the whole thing lol. 

This lyric has an entire post to its self that will be coming soon. But these words are more than words. They helped me in ways most people will never understand.

It's truly the little things that got me through along with my amazing, husband, dad and loved ones. My story would have ended a lot different without these people. They are my heart and I just couldn't give up on them.