Hi everyone…Im new.
AnonymousJanuary 26, 2007 at 8:25 pm
Hi, I first got introduced to this web site when me and my mom were reading some of the success stories togeather, which I found very helpful and inspirational in my (continual) journey to get better. My story could be a novel so i’ll make it short and sweet.
I was 20 years old, working 2 jobs and going to college full-time. I 1st noticed cold feet, then weakness in my legs (it got to the point where I couldnt walk). After a few trips to my doctor, I went to the ER, where I had the Spinal Tap and was admitted to the hospital, everything was okay in the beginning until the GBS began the spread upward throughout my body, the next thing I know I was in ICU. To make a long story short I was on the vent, had the tracheotomy, the feeding tube, went through the “Standing-A Frame” (just to name a few)…and after 30 long days in the hospital I was released.
It’ll be nice to get to know you all.
AnonymousJanuary 26, 2007 at 8:38 pm
Hi Miss 3 days
Just wanted to say welcome to the Boards, though it is a pity you had to find us.
You are so young in my book. Whn did GBS hit you?
You were on the vent, had the tracheotomy, the feeding tube, went through the “Standing-A Frame” (just to name a few). It is scary isn’t it?
As it is now gone 1.30 am I will refrain from going on.
Just wanted you to know that you are among friends – who know and believe, from hard-won first hand experience
AnonymousJanuary 26, 2007 at 8:38 pm
[FONT=Georgia][COLOR=magenta]Welcome Miss. I’m sorry you had to find us but we are glad you are here. You will find answers, comfort and then more questions on this board than you ever thought to ask. 🙂 [/COLOR][/FONT]
[FONT=Georgia][COLOR=#ff00ff]We are a family here, each of us are here to help or call for help and most of the times both. [/COLOR][/FONT]
[FONT=Georgia][COLOR=#ff00ff]I’m sure you will find us odd but loveable and I know you will find tons of information on this forum…don’t hesitate to ask![/COLOR][/FONT]
AnonymousJanuary 26, 2007 at 8:59 pm
Hi and welcome.
How long ago did you have GBS? Yes, I went downt he same path … vent, trachy, NG tube. I spent 7 weeks in hospital including 4 in ICU. It was pretty scary at the time (july 06) but I am glad to say it is pretty much behind me now.
You dont mention how you are doing now … I hope you are well and look forward to seeing you around the boards.
AnonymousJanuary 26, 2007 at 9:12 pm
The GBS struck me in September 06. I can walk but im dealing with the endurance, balance, strengthening, flexabliity…; and I’m currently going to theraphy: Speech, OT & PT.
(But for how I once was to what I’m able to do now I have no logical reason to complain).
Thanks for the replies yall, keep em coming.
AnonymousJanuary 27, 2007 at 2:22 pm
Hey there, Miss. Sounds like they have you very busy getting better. It takes a while, take it slow. If your PT people are educated they’ll know this is no quick fix. That may be one of the hardest things you deal with at your age. Listen to your body, take it slow and let the process make you a stronger person.
You use the word “endurance” it’s something we all work for. Just a heads up, fatigue is one of the hardest battles ahead. But you seem to have a really good outlook. As you said, when you look back at where you were and how far you’ve come…that’s a good thing.
AnonymousJanuary 27, 2007 at 5:57 pm
I got GBS when I was 19, so I have a vague understanding of what you went through. I was in the hospital for about 3.5 months or so, which was apparently quite quick. Sounds like you were quite active, which I wasn’t, which might account for the healing time. Each person on here had a different experience with healing, but the doctors attributed my so-called quick response to being young.
Anyway it’s been just over nine years, so I’m not exactly close to you in age, but I do have some recollection of what it was like trying to juggle school and fatigue and such, so if you ever want to email me: [email]firstname.lastname@example.org[/email].
It can be hard, and you’ll get very sick of the scared look in people’s eyes when you explain the disease. But it does get easier over time. Alas, how much fatigue you’ll have to end up dealing with is still up in the air. I went right into denial after I was finished with PT and such and went straight back into full-time school, full-time social life and working for the paper. Diagnosed with post traumatic stress disorder about a year later. So keep an eye on your activities and don’t try to go too hard too fast, if you can help it. Which most of us can’t. Most of us here were nose-to-the-grindstone types and have had to cut back to varying degrees.
The only thing I can’t stress enough is to find a doctor to rule you unable to work for a year. Most neurologists will have no trouble signing off on that. Because you don’t want to wait until you can’t work to start on the disability case. I know you probably think you won’t need it. And let’s hope you don’t! But by the time I finally admitted I needed it, I REALLY needed it. And my case went miraculously quickly — a year and a half before I was accepted. (You apply, they deny, you get a lawyer to work on contingency and appeal, they deny, you request a hearing, usually you get approved.)
And since you were working so hard, it was probably out of necessity. No doctor will want you working that hard again anytime soon. And if you get the disability only to find you don’t need it, well awesome! But better to have it and not need it (when you start working they take a dollar out for every two you make so if you go back to previous levels of work, you’d just stop getting payments) than to not have it and need it to survive. I wish we had started on my case while I was in school. We were all in denial that I could find somewhere that I could work enough to survive. It didn’t happen. And I wish I had known at the time that many student loans can be partially or wholly forgiven if you can prove you are partially or wholly disabled.
That’s why it is so vital to start now. If all goes well, you’ll find that the fatigue is mild and you just have to adjust a bit and you can cancel your disability case or whatever. But in case of the worst, you will be on your way to taking care of it before you are worrying about how to keep a roof over your head.
Anyway I hope I didn’t scare you, it’s just that hindsight, as they say, is 20-20 and my life would have been significantly easier if I had been a bit more accepting of the incredibly scary, life-threatening thing that happened to me. Hell, it took me years to reconcile that I had been on life support. In my head, I just wasn’t someone who had been on that, because that’s only for people who were REALLY sick. And sure I had gotten sick but, I mean, it hadn’t been THAT bad…. Denial is a useful tool up to a point, but past that it’s just darned frustrating!:rolleyes:
Please email me at any time. I’m addicted to email and so will probably respond the next day or sooner.
AnonymousJanuary 27, 2007 at 9:56 pm
Welcome Miss 30 Days!You will find there are always people here who under-
stand what you are going through.Try not to push yourself too hard.Keep up
the therapy and listen to your body and rest when it says it’s tired.Expect to
have some bad days,and don’t get discouraged.You have a great attitude!
January 30, 2007 at 5:30 pm
Miss 30 Days. We both got GBS in September so I know much of what you are going through. I was paralysed from the nipples down but did not need to have the trach.
Hang in there. It does get better. I’m in a wheelchair but am walking with a walker up to about 80 feet and am feeling much better. The key thing I am getting from these boards is that you shouldn’t tire yourself out too much when doing therapy.
You are young so we can hope and pray that you will have a good recovery. Take things one day at a time.
AnonymousJanuary 31, 2007 at 2:18 pm
I learned alot in your thread. I feel that I am in the “denial stage.” My therapist and coworkers keep saying that they are glad to see me but I need to take it easy. I tell them that I feel fine and now I am ready to go forward like I was, but they tell me to slow down you will go backwards if you go too fast forward. I think that I am just recovering from a simple cold and I will be myself again in no time. WRONG!!!
Also I would like to welcome Miss_30 to the family and you can really vent your frustrations out here. Glad that you found us but be careful to not push too hard!
Till next time,
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