Change

Change... We can't avoid it... Good or bad, it's around us constantly. Since December 12, 2014 everything has changed. I've changed; my face, my body in general, my hair, my out look on life, my wardrobe and so much more. My husband and all of my other constants in life, we are all different.

This is not the life I chose, but I respect it and I'm glad that I'm here to live it. I'm glad that I get to share it with the people I do. 

Since my world started spinning 14 months ago I clung to anything that would give me a since of purpose something that would remain constant... That has been my therapies. I've had about every kind you can have, speech, occupational, recreational and physical therapies.

I've been done with speech, recreational and occupational for months now but today was my last physical therapy session.

It's amazing how far that I have came.

This was one of my first physical therapy sessions.

And this is from today- my last day having PT.

I walked 500 and sum feet 😊

Stair steps

Balancing on one foot

Standing... Booty for days, I know lol. Some things never change.

As always it's bitter sweet. I'm so proud of the progress that I have made but it's always hard to leave behind the therapists and staff that I see on regular basis.

Today I brought in cupcakes and said my good byes. 

Thank you to Eric and Gabe- who wasn't there today. 

On the way home I stopped in at the local gym that's around the corner from my house. I got my membership and will be able to mob my powerchair- the "Hotmess Express" over to work out all by myself... I better order my orange flag for my chair now 😜. I'm excited for more freedom and the next step in my journey.

Thank you to every person who gave up their free time to take me to therapy or to come watch my progress. I love you all and appreciate more than you will ever know!

 

"Give me strength when I'm standing and faith when I fall

"Give me strength when I'm standing and faith when I fall" these lyrics have so much meaning to me. My grandma Virgie past away in January of 2014. Prior to her passing I have always loved that song but it meant even more after she died.

I planned on getting those lyrics tattooed on my foot as a reminder and a tribute to my grandma.

I never got a chance to get that tattoo. In early December 2014 I ended up with a sinus and ear infection... I never imagined that it would turn into so much more and change my life as well as everyones around me.

On December 12th I was admitted into the hospital. After dozens of tests and my rapid decline I was diagnosed with Guillain Barré Syndrome with the AMSAN variant. In a matter of hours I lost my ability to do everything; open my eyes, swallow the massive amounts of spit I was producing, walk, talk, breath... Everything but move my thumbs...

My thumbs became my lifeline. My only way to communicate. I would wiggle my right thumb for yes and left for no... I'm so lucky to have such an amazing husband who's number one priority was me. He made sure that ultimately I was the one to make all of the decisions. The doctors would present him with a plan and he would either have them tell me or he would. They would then ask me yes or no questions... Months down the road a doctor that I dubbed "Dr. Wackadoo" could not believe that I made all those decisions and I guess expected me to be a vegetable and have no "say" in the care I received even tho I was full aware of everything... I think that was the worst part.

Those who know me, know that above all, my favorite things to do is eat, talk and sleep... If that's not you ultimate nightmare, it should be. When I started to deteriorate, my amazing neurological Doctor told me that things would get bad and scary, but I was not going to die and that I would be ok... Bless that man. Without those words who knows how my story would have played out. 

There were 3 times I thought that "this is it, I'm going to die." I didn't see a white light but I really thought that it was the "end". But then the words that sweet doctor said popped in my head and I knew I would be alright. That God had a plan and was not done with me yet. So I would say my prayers and repeat sayings and lyrics.

"Give me strength when I'm standing and faith when I fall" those words mean more time now than ever. I'm 14 months from being admitted to the hospital. I was completely paralyzed in 72 hours. Spent 4 1/2 months in various hospitals/rehabs relearning to do everything... And I mean everything. I can now walk around the house and short distances with a walker. 

As much as I hate this process- patience has never been my virtue... In grateful for it. I can't wait for the day that I ditch all of the medical equipment that scatters our home. To jump out of a vehicle and not wait for someone to grab my chair or walker... But I just have to trust in the plan.

I still have plans to get those beloved lyrics tattooed some where on my body. But since GBS caused me to have extremely sensitive skin (neuropathy) especially on my feet I'll just continue to repeat those words to myself every time I'm presented with a challenge.

Second Chances- Moved from my other blog

I moved this over from my old blog- originally posted on January 9th 2016.

A year ago I finally hit my plateau with Guillain Barré Syndrome and started reclaiming my life. Most people don't loose their ability to do EVERYTHING and eventually get it back. For that I'm so grateful. 

During the last 12 months many people have said how sorry they felt for me. Please don't feel sorry for me... Has it been easy or enjoyable? No, far from it... But in these short 12 months I have experienced more love and human kindness than most will experience in a life time.

I know the real meaning of unconditional love- a dad and husband and so many more who ran there selves ragged for me, slept in awkward places, lived on fast food and spent hours upon hours in hospitals holding my hand, rubbing my feet or wiping my face, just so I felt a little bit safer and comfortable in an impossible situation. 

Kasie and Aunt Kim camped out by my beside giving dad and Bryan a break.

I love these girls :) 

I'm so blessed to have him by my side.

The most amazing men in my life- they were trying to put my hair up, that's love :)

I've learned that people will always surprise you- the ones who spent every available moment with me even tho they had jobs, school, families and so much more... And then the people who just didn't come for what ever the reason.

Guillain Barré has taken many things from me, everything I used to define myself as... But it has given me so much more. I learned to slow down and celebrate the little moments no matter how small or odd they were; moving body parts, flipping someone off, wiping my own ass, eating a cheeseburger, transferring, rolling over, first steps, ect... No moment is to small to celebrate. 

First cheesecake!

First cheeseburger that I waited 100 days for.

First time outside in aproximently 9 weeks.

One of my first times transferring by myself.

First time standing up!

Steps! 

First smiles after many sessions of the wonderful, Julie shocking my face.

First time writing... The best last names ever!

First time dancing- thank you Uncle Gary for dragging me on the dance floor! I love you!

First time rolling onto my stomach on our couch... I was stuck that way for awhile... 

First time using chopsticks 

First time driving in over 9 months!

First ponytail by myself!

I lost ability to do the simplest things that I have always taken advantage of. But now my loved ones and I know that life isn't a guarantee or always beautiful. But it's worth it.

If there is anything to learn from this, please live in the moment, enjoy the little things, and appreciate the people in your life. Be kind to people- everybody has their own battles. You will never know what a kind gesture will do for another.

Riding on Faith

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. 

Wishin and a hoping... For a Slurpee

A year ago today, I got my first real "food" after 69 days of getting nutrients just by a feeding tube. 

P.S. I rocked that hospital gown lol

You can't tell but I was smiling on the inside! Damn face paralysis was messing with my moment.

My favorite things have always been eating, sleeping and talking. With the feeding tube I wasn't hungry but in true fat kid fashion I was craving any food I could get. At my worst with Guillain Barré I was unable to open my mouth, move my tongue or swallow... Which resulted in me being a slobbering mess... Ask anyone- basically every person who came and visited me had a chance to suction out my mouth... Fun times lol.

There was many dedicated hours in speech therapy practicing moving my tongue back and forth with an ice chip. After a few days I was able to be spoon fed water. I was terrified that I was going to choke on a tiny piece of ice I had no idea how I would ever eat solids and how it was so easy for everyday people.

I remember being in the ICU after I learned to communicate and asking for a cherry and Coke slurpee... That was my top request on all of my white board requests behind pain meds lol. 

Remember- someone had to do EVERYTHING for me so there is some random personal stuff on some of the boards but hey that's life.

It took 2 months but my wish came true... And it was kinda gross lol but amazing at the same time. We learned that after not having soda after 2 months it tasted disgusting and the carbonation burnt my mouth... But actually tasting something was amazing.

Thank you babe for driving all over to find a 7-11 and for the endless spoon feeds. I love you mostess 😘