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Ashley

Ashley

I’m Ashley I was diagnosed with Guillain Barre Syndrome or GBS(and then after multiple relapses and persistent symptoms Chronic Inflammatory Demyelinating Polyneuropathy or CIDP) in September of 2019 after going undiagnosed for nearly two months while being paralyzed from my neck down. My journey has been a bumpy ride. I received IVIG or Intervenous immune globulin treatment and did 10 weeks of intense rehabilitation in a acute rehab hospital. But sadly they had little to no experience with GBS which lead to me not getting much beneficial physical therapy or occupational therapy. Once my time was up I was sent home without the equipment or education me and my family needed. It was rough for the first six to ten months. I had lucky regained part of my core and arms but still couldn’t use my lower body or hands. Which made things very difficult. To be barely 20 and needing 24/7 care and help with every task was challenging mentally and physically. Since then I have regained most of my upper body and hands but still am a quadriplegic with no ability to weight bare at all. I also still have little to no feeling in most of my extremities except where I have severe pain. Since getting sick my life has changed a lot,I spend most of my time focusing on myself and trying to do things that I enjoy and make me happy instead of worrying about things I can’t control or don’t bring me joy. I also spend quite a bit of time at doctors appointments as well as getting my treatments. Being so close to dying and knowing how it feels to feel hopeless and helpless has inspired me to thrive as much as possible. I’m extremely grateful to my neurologist who specializes in GBS and CIDP who has saved my life and helped my quality of life as well as my mom who is my full time caregiver. My message to others is to live your life how you want to not for others and to others going through disability/ chronic illness is to keep pushing for answers you’ll get them eventually.

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