Hello Kelly and all This my first Post!
Wow what a wonderful website…thank you Kelly.
Here is part of my story this is the short one…I knew of this oganization 8 years ago but was too afraid to share maybe now I can get some help sometimes it is hard to ask…I have the later stages…I Think?? I think I got Gillian Barre’ from a vaccination when I had to enter college or I would not be allowed to take classes…otherwise…I was 33 when I got Gullian Barre’ now I am 44…I am on SSI disability and I can’t work…the pain in my feet and ankles get so bad when I do manage to get myself to the ER they really do not treat me well…The numbness,tingling,some loss of muscle tissue in my hands and feet oh yeah and my ankles will never be the same…I get the burning sensation on the pads of my feet thats alot of fun…LOL…just kidding…among other strange feelings on skin…I am always active and lively person and I was and always will be a recovering alcoholic. The time this thing called GB was found I was 8 years sober told the staff of Doctors treating me I had to tell them everything…I am a member AA thats what sober people do tell the truth…did the meetings/service/coffee commitments/co-chair meetings dogwalking and going to school…I loved every minute of it REALLY but then when I THINK too much… it could have been a tick bite…one of my clients dog had ticks on him…[Then the owner moved toke Bandit a Jack Russell Terrier with him he was my favorite]JUST ANOTHER LOSE…I was a trooper until this dam disease hit me…I still think it is some sick joke from god…It toke everything out of me… and does today too…I was run down and the doctors at Saint Lukes Hospital in NY treated me well but it toke them almost 8 months to diagnose me by then I was numb up to my cheast not face…had the plasma physises [spelling is wrong]…nothing worked except the dreaded prednisone…100 mg at 33 I developed CATARACTS…. a slow taper surgery was to follow for that… But I walked…for a price to pay…my eyes… and no I never finish the college thing due to getting sick…too long a story I am crying as I relive this…Now that I moved from the city I get The worst treatment of all they want to do is give me pain pills…milk my medicade they think I am stupid…to top everything I can not change my neologicial doc without a consiltation meeting because we disagree alot…so I live in pain some days are better than most…I miss the city so many good memories…I better end here.
Take care all………….I also hope I helped… I’ll be checking on the board to say hello now that I broke down the doors!! BAD SPELLER
Penny