Guillain-Barre Syndrome

I am glad to join this group as no one understands the bond that I have with my two dogs. I had an atypical case of guillian barre where I lost became weaker and weaker over the course six weeks to the point where I could not get up, walk, or sit up unassisted. One of my dogs was unable to go up the stairs. In the last few weeks before I went into the hospital I spent most of my time upstairs in my bedroom and the bath across the hall. I missed my dogs terribly. They didn’t see me differently I was still the person who gave them snuggles and they would still light up every time they saw me. They were the only ones who could make me forget the horror I was going through. I would gather all of the strength and energy I had to scoot down the stairs to see them. They brought me more love and comfort then anything else could at the time. For reference I have two cute gentle and lovable giant dogs so carrying them up the stairs was not an option. They continued to bring me joy and happiness post hospital stay and throughout my journey to recovery. They even learned to walk while I “chased” them trying to get their toy. The thing about dogs is that no matter what state you are in they will always see you as their person. I don’t think any of my family truly understands how much they helped me get to where I am today or how much they both truly mean to me. They kept me going when it would have been easy to give up. Even now while I have mostly recovered from my guillian barre they bring a smile to my face when I have bad days with my health from my other illnesses. #womansbestfriends #GuillainBarreSyndrome #Dysautonomia #Gastroparesis #SmallFiberNeuropathy

Hi, my name is Jdoherty_0215. I'm here because I acquired Guillain Barre Syndrome shortly after I had my Flu Shot. I have been struggling to recover for 4 years now and I am still unable to walk, I am in a wheelchair, and I am living in a Nursing Home. I now also suffer from depression and have PTSD. What makes me the most sad is that I cannot have my cat living with me in a Nursing Home. My cat is being taken care of by my sister, but I miss her dearly 😢

#MightyTogether

I am a mess. I’m a 71 year old widow. I am a GBS survivor. I have had 3 strokes. My granddaughter (23), her boyfriend (26), and my great granddaughter (6) had asked to stay with me temporarily as they were homeless. The boyfriend is not the father of my great granddaughter. They were with me from August until November. They left angry. After they left, my great granddaughter was taken by Social Services and placed in foster care. My granddaughter called me and asked if she and the boyfriend could stay with me a few days. I told them they could stay 3 nights. Am I being selfish? He has had 6 different jobs since August, and she has had 2. They are on ”suspension” from their current jobs. I am torn between wanting to help, but I have limited resources (on Social Security and a very small pension). I had to go on disability in 1996. Mentally I just can’t handle it. Thank you for reading.

Hi, my name is GreenLion27329. I'm here because I am looking for others who deal with these conditions on a day to day basis.

#MightyTogether #Lupus #GuillainBarreSyndrome #EpilepticHemiplegia #Asthma #COPD #ThyroidNodules #SjogrensSyndrome #di

Hi, my name is CatskillLily. I've been diagnosed with

#MightyTogether #Anxiety #Depression #PTSD #Grief #GuillainBarreSyndrome

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.