Guillain-Barre Syndrome

At this point I've been waiting 13 months and 4 days for a proper wheelchair. It's been 2+ years since I've had physical therapy. My insurance covers exactly 7 sessions PER YEAR. When you've been diagnosed with Guillain-Barre syndrome and polyneuropathy (multiple nerve issues), that equals a drop in the bucket for the amount of therapy needed to get better. I've had multiple Dr's try to get me more but insurance has denied it. I'm coming up on 4 years of being bedridden, 4 years of being dependant on others for not only my needs but my son's. 4 years of passing the buck. 4 years of 'we cover transportation costs but now thar the pandemic is over you don't matter" so I can't get to appointments. In the last 18 mos I've been canceled on a lot. I finally have a case manager but I've not been able to see Dr s for over a year so certain meds haven't refilled. I understand yet wish they'd take into consideration I DON'T HAVE A WHEELCHAIR And HAVE BEEN TRYING TO GET IT SINCE JULY 2022! I've had 5 primary care providers too. Not by my own doing but because they've quit the Medi-Cal system. I'm at the mercy of Medi- cal. I can't afford to pay for private insurance. I'm not well enough to work but I'm too well to be considered disabled. WTF?!? I just want to get better for my 5yo and myself! So unhappy & very frustrated!!!

Hi, my name is Unrulychik. I'm here because I've been diagnosed with several autoimmune disorders. Vasculitis, GBS and Hashimotos. Prednisone is a bear..... and I'm a walking blimp.

#MightyTogether

Hi, my name is anonymous I want to learn more about caring for someone with guillain barre syndrome

#MightyTogether

My diagnosis has felt like both. I'm restricted from the rest of the house(it's not currently ADA approved & I'm still struggling with my insurance company to get a proper wheelchair. It's almost been 1 year! Bedridden the whole time!) and I spend so much time alone that I feel any company is a treat. Sometimes I feel like I simply exist. Some days I feel like I'm a mom in name only. My diagnosis of Guillaine-Barre Syndrome has robbed me of everything. My 4.5yo only ever remembers me being bedridden, not surprised as I went into the hospital about 2 weeks after his 2nd birthday & spent 2 months there. In the middle of COVID, so no visitors & the only reason I was sent home was cuz my insurance said it was time. I wasn't better but insurance ran out. It sucks. I wasn't better, not even close. And physical therapy is 7 sessions PER YEAR! Which is basically seven, 30min sessions a year. With GBS it's not enough. With anything at all, it's not enough! I long to feel like a mom, a person, like I have more say in life than simply existing. I do everything I can to feel like I exist, to be a mom to my son. Even after I get my wheels, I feel like something else will keep me down. Like it'll be a huge hassle to get me into my chair. I can't transfer without help. I feel like some people close to me would rather keep me bedridden so I am not a participating member of society. I feel like my syndrome allows others to control everything about my life. The only person I've really seen since this happened is my bff since I was 10. Everyone else is turned away Grr. So many thoughts running through my head. I'm really wondering what exactly I contribute to this world. I honestly feel down and out ☹️

My 4yo is sick with I don't know what. He's got spots and a fever, sometimes runny nose, sometimes congestion but the spots are only on his face and lower arms. He's been fully vaccinated so measles and pox seem unlikely. He just broke his fever thankfully. He fell asleep standing up next to my hospital bed tonight so I used all my strength to pull him up on my bed with me. Then he wanted his own bed when he kinda woke up. I'm bedridden, literally, cuz I don't even have a proper wheelchair (waiting for insurance etc) so I called my mom who we live with to help him to his bed and asked her if she had time to change me after please.

Because I've had my son with me for several hours and wear a diaper :( I did my best to hold my urine in but sometimes nature sucks... that by the time I got changed, my bedding was soiled as well. I hate when that happens which is rare. I'm embarrassed by it and hate it creates more laundry for my mom.

Tonight she called me the worst mom ever, Made fun of the fact that I've gained weight, a LOT, since my Guillain-Barre syndrome diagnosis. Said she should just kill me and feel better (she won't do it) . Don't worry, I'm 10000000% sure she wouldn't do it. It's the alcohol talking coupled with other frustrations. I'm just a captive audience.

She even went so far as to blame me, saying I love this. Telling me That I made this genetic immunologic disease happen. I wish I had that power!! I'm just as frustrated by everything as she is but I don't take it out on her. I just go with the flow. I write it out by posting blogs and praying on it.

Tonight I'm angry at myself because I reacted and responded to her in anger. I snapped. I told her to kill me if she thinks it'll help things. It pissed her off because I challenged her. I've listened to the blame game since 2020. I delayed my health for 2 reasons. Covid and she was hospitalized. I had a toddler and my 70yr old dad needed me to pick up where my mom left off. He wouldn't have been able to handle his life and my son while mom and I were in the hospital. So I waited for 5 days after she got home to get help. Here I am roughly 2.0.0.5 years out,
Unable to walk but I can hold my son,. Like I said, I snapped. There's only so much shi-take mushrooms someone can handle! Now that I've got this out, I'm gonna sleep and hopefully things will be better tomorrow, right? I'm still mad at myself but I'm not angry anymore. I'm "not letting the sun go down while I'm still angry" sorry to take up your time but thank you for reading. Night.

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.