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Guillain-Barre Syndrome or GBS. My journey so far.
My journey with Guillain-Barre Syndrome or GBS has been difficult. I only had 11 days in the hospital and 6 weeks in an acute care home before they sent me home still broken with no real diagnosis. They listed it as spinal stenosis. I went into the Emergency Room unable to walk. They had a Neurologist come see me while in the ER and he diagnosed it as GBS. Yet that never made it into my chart.
I`m frustrated because if that diagnosis was even referenced in my chart, maybe my treatment would have been more than them simply shoving pain medication down my throat whenever I was conscious. They could have given me IvIg and focused more on keeping my limbs functioning.
I got home from the hospital in early November 2020. I finally saw the Neurologist in February 2021. He referred me to a specialist and in April 2021 he confirmed that I had GBS, he thinks. That`s what we`re treating it as.
When I was released from the acute care place, my hands looked like commas, i.e. bent down at the wrist with no finger strength and my legs didn`t work either. At least to hold me up or walk. I could barely hold anything in my hands including my 2 year old son. The 2 months I spent away from him were hard but not being able to hold him was even harder. During that 2 months I couldn`t even see him thanks to Covid-19. Absolutely no visitors allowed in hospital settings.
I`ve now been home for just over 2 years. My hands work a lot better now but I`m currently wheelchair bound and losing hope that I`ll ever walk again. Honestly, I`m trying to gain arm strength just so I can transfer myself instead of needing to rely on a caregiver for transfering in and out of my wheelchair/bed as well as needing adult briefs. I`m also trying to figure out better ways to maintain a healthy weight because I`ve gained a LOT of weight since all this happened.
I`ve also been struggling with my insurance to get more then 7 physical therapy visits a year. I haven`t been able to find anywhere that accepts my insurance that also is set up for a patient who can`t transfer out of their wheelchair. I try to do the PT exercises but without proper equiptment my walking is none existent and my toes are dropping. Especially my big toes that are folding completely in on themselves making them very painful. The hardest thing is having my now 4 year old fear that he won`t see me for a long time again everytime I leave the house for a Doctor appointment.
The pic is my son and me.
