I'm listening, Jana! I think I'm also afraid that if I ask my neuro, he'll say, "Well, I'm not sure you really need that..." That would be such a blow. If he doesn't realize how sick I am, I don't want to find that out right now! And he might not realize it, because he has never seen me at my worst, even though he believes me when I describe my symptoms (when I told him I was getting bad, he got me admitted for IVIG).

I think I'd better talk to the psychologist about this tomorrow. I think that I am still doubting myself, and part of me is wondering if I'm exaggerating my symptoms. This is a disease where you have to take it easy when you're feeling fine, so it messes with my confidence--even though no one is suggesting I'm not for real.

Abby

Oh, Abby!! Bless your heart. I DO understand. I think a lot of us have been "bashed" around a bit by doctors -- and our confidence has taken a beating. I am so blessed to be in a good place right now -- fantastic doctors -- and sometimes I tend to forget........

I think of that picture of you in that little chair/cart "thingy" your hubby designed and made -- like a rickshaw -- and I don't think you are exaggerating AT ALL!!

When I requested my handicapped tag, I told my GP that I often felt FINE going INTO a store, but would feel weak coming OUT of the store -- and that was why I needed the accomodation. He totally understood. (I got the form signed by my GP because he is in the same county as where I get my car tags -- and both of my neuros are in different counties. Probably wouldn't make a difference, but in my mind it just seemed to make more sense. )

You know I am not normally a complainer and I really appreciate all of the support.

Thanks for hanging with me until I dial down the crazy a little bit.

In one of the social security evaluations, the neurologist that examined me asked me if I could get out of my wheelchair and walk a few steps. Of course I can, I said proudly. I can even walk 100 meters on a good day.

In the next evaluation (where they checked my driving abilities) the person who examined me asked why I got such a low score when I have such significant disability. I told her that what I told them, and she said- you miss led the person who examined you. she told me that when someone says they can walk 100 meters they automatically assume that he can easily walk 1000, and not that this is what he/she can do on their best day.

I don't know if what she said is right or not, but probably it is. why is that? maybe there are people that take advantage of the system, or maybe they just assume there are people like that.

Or as my brother said to me a while ago-the people that get the best benefits are those that are fraudulent, because they have all their bases covered, their stories are fully coherent, there is no conflicting data, and they make no mistakes. so, no one doubts what they say. not like you who has this bizarre disease that doesn't make sense.

And like Jana said, I have stopped caring what people think. I walk when I can, to the distance that I can, and use my wheelchair when I can't. and if it confuses the people that see me, it's their problem not mine.

Pinky, yes I have done the major cry. The cry that I have become afraid of because it will degrade my breathing. Once when my mom was hospitalized I had this strange silent cry because there was tears but my chest muslces wouldn't allow any noise. I can be going along and yes running into a rough patch and suddenly something on TV triggers it. I remind myself that there is a good chemical release with tears and be thankful for it.

I just went thru a piece of hating this disease because I cant do the kind of release I used to do easily. Things like cry, yell, sing loud, pound a pillow, heck even just a hard walk. I regret that I didnt know I needed to be thankful for basic things. I sure know that now.

The first year I felt much like you in that I didnt understand why I wasnt being offered information on how to cope, what ot expect. Something! It took me about 18 mo. to learn enough about what this was going to be for me to beable to have self care plan, tools.

I joined a group right away and they helped me have a sense of knowing and a place to turn when new things happened. I am so glad you came here. Welcome.

Annie59