The Faces of Guillain Barré & CIDP 2018: Day 1- Rachael #68

My name is Rachael Bradshaw and I am from Delphos, KS  I am 15 years old, currently a freshman in highschool. I was one year post-diagnosis of Guillain Barre Syndrome on March 14.  I want to inform more people about GBS and raise awareness for our community. This is my experience with Guillain Barre.

In the beginning of March 2017, I had caught a virus of some sort.  I hadn’t ever been sick with anything major before, so it wasn’t really concerning- just needed a few days and I’d be back at school.  

My mom, sister, and I, 3 months before diagnosed

Over the course of a few days I started getting horrible headaches, and pain and tingling feelings in my lower legs and feet.  A week before I was admitted to the hospital I went to the ER with severe chest pain. They sent me home and had me come back the next day for IV fluids since I was really dehydrated.  The next few days they did various tests trying to find what was wrong.

   

I woke up the morning of March 9, 2017 feeling dizzy and had really bad balance.  I remember standing in the hallway in our house, apparently blacking out, and a second later laying on the floor crying.  When I tried eating the Jell-O we had made the previous day my mouth felt prickly and weird. My grandma took me to the local clinic where they scheduled an appointment with an infectious disease doctor later in the afternoon.  When we got home they called and said just to go to the ER.

   

That afternoon, I was admitted to the hospital for the first time.  They thought I had CMV at the time since, after doing a spinal tap, the protein levels in my spinal fluid weren’t high enough to be GBS yet.

   

After undergoing several scans and tests, on March 14, 2017 the results confirmed what it was- Guillian Barre Syndrome.  At the time, nothing really made sense and I was angry at myself and the world. I hadn’t ever been very sick before and wanted to know- why me?  Why anyone? Nobody deserved this to happen to them.

   

I remember many sleepless nights and lots of pain.  I couldn’t roll over in bed without help and wasn’t allowed out of bed since I was a major fall risk.

   

I got IVIG treatment and then was transferred to Children’s Mercy in Kansas City- when there I did therapy but didn’t improve much.  I had plasmapheresis when I was there and was also diagnosed with Bickerstaff's Brainstem Encephalitis. I would have crying spells and outbursts daily.  One of the meds I was on caused me to have an irregular heartbeat that was life threatening. It was a scary time for all of us.

Getting Plasmapheresis

In May I went home, graduated 8th grade with my class, and got IV steroids once a day over a 5 day hospital stay.  We saw a huge improvement from the steroid treatment and I went to Madonna Rehab in Lincoln Nebraska. I was there for about 3 to 4 months and made huge strides in my recovery. The therapists, environment, and friends I had there was a big help.  I was happy for the first time in a while. When I came back home in September I started school again.

   

March of this year has been full of small accomplishments and also a few major ones as well.  The 6th and 7th I got another round of IV steroids, and on the 10th I walked halfway across the living room to my mom without anyone holding on or me holding on to anything.  It was really unsteady, but I did it. On the 14th, my doctor diagnosed me with CIDP.

  

Everyone I know and the GBS community have been so supportive and have been amazing in all they’ve done for me.  I’ve come so far since diagnosis and am so thankful for everything. GBS is not my name and won’t stop me.

My mom and I, January 2018

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Rachael is selling these adorable turtles that she creates. $15 each plus shipping. For the month of May $5 of each purchase will be donated to the GBS CIDP Foundation.
Contact Rachael on Instagram @rachaelcosplays for more info and to order.