A new first post-GBS: Reading an iBook
On Friday night (January 4), I downloaded an iBook, “Happily Ever After” by Holly Gerlach. She is a GBS survivor from Edmonton who contracted this disease 3 weeks after delivering her beautiful baby girl as well as getting the flu a week before her symptoms surfaced. I had the privilege of meeting Holly when she drove down to Calgary to participate in the Walk & Roll fundraiser which my coworkers organized in my honour. Meeting Holly and another GBS survivor Dean at the fundraiser and seeing them both walking gave me new hope I will be like them one day too - walking. Reading Holly’s book provides an insight of what life with GBS looks like.
What you learn when meeting other GBS survivors, all our stories are different - how we were diagnosed and even how we are treated or how long it took to recover. The obvious similarities between the three of us were: we had to be intubated and with a tracheotomy, stayed in ICU for more than three months, had post-admission and/or postoperative complications and were paralyzed from the neck to our toes (though I was told my paralysis went up to my eyebrows). The obvious difference - my ICU was like 369 days while their stay were more like 90-100 days and our recovery were different based on our GBS severity.
Reading information online, I seem to fall in that 5% to 10% of GBS survivors where GBS could be fatal or severity in symptoms and some survivors remain permanently paralyzed. Honestly, it’s disheartening reading this - here I have almost died twice (soon after I was admitted to the hospital I had a cardiac arrest and then 6 months later had severe sepsis with septic shock); plus its been 2.5 years now and I am still paralyzed from the shoulders down. I am conflicted as I see recovery with movements in my limbs but how much longer do I have wait before I can scratch my nose, or clean myself or learn how to walk again.
I have NOT given up hope - miracles DO happen!
What you learn when meeting other GBS survivors, all our stories are different - how we were diagnosed and even how we are treated or how long it took to recover. The obvious similarities between the three of us were: we had to be intubated and with a tracheotomy, stayed in ICU for more than three months, had post-admission and/or postoperative complications and were paralyzed from the neck to our toes (though I was told my paralysis went up to my eyebrows). The obvious difference - my ICU was like 369 days while their stay were more like 90-100 days and our recovery were different based on our GBS severity.
Reading information online, I seem to fall in that 5% to 10% of GBS survivors where GBS could be fatal or severity in symptoms and some survivors remain permanently paralyzed. Honestly, it’s disheartening reading this - here I have almost died twice (soon after I was admitted to the hospital I had a cardiac arrest and then 6 months later had severe sepsis with septic shock); plus its been 2.5 years now and I am still paralyzed from the shoulders down. I am conflicted as I see recovery with movements in my limbs but how much longer do I have wait before I can scratch my nose, or clean myself or learn how to walk again.
I have NOT given up hope - miracles DO happen!
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