Nadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas) (10/26/90)
Index Number: 11281 Hi Aaron....... Glad you are back. Sorry you are having such a difficult time with the MS and the neurologist. My neighbor has MS and she has the same problems with her exacerbations and the doctors. She recommends the following books written by Nancy Mairs : "Plain Text" "Carnal Acts" Reach out - your friends will be there for you. There are community services that are available for just such help - call your local information and referral hotline for phone numbers. Nadine -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.org
Charlotte.Ferris@f5.n382.z1.fidonet.org (Charlotte Ferris) (10/26/90)
Index Number: 11335 Shalom, Aaron..... Your last post sounded kind of blue, so I wanted to give you an electronic pat on the back. Hope you're feeling better by now. I agree, the scary part of the whole schmeer is organizing help all of a sudden when you need it. That happened to me 2 summers ago when I caught pneumonia and came out of the hospital 9 wks later with a tracheostomy and a portable ventilator. I had needed attendant care before that point, but all of a sudden, I needed a whole lot more. It kind of threw my household into disarray for awhile and was a very unhappy time for me. But just hang in there. And another thing: don't let your doctor totally control your reality for you. Some doctors are real jerks, and ignorant besides. If you do not believe it is "all in your head," then don't let your doctor try to insist that's the reality. I have had a number of fights with doctors over various conditions I have had in which I have been PROVED RIGHT. The insurance thing: is there some reason you don't have Medicare? If you do have it, find a doctor who won't hold it against you or treat you like a second-class citizen because of it. For lack of any more information about your situation, I'll stop preaching now.....but the best of luck to you. Keep posting to us. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!382!5!Charlotte.Ferris Internet: Charlotte.Ferris@f5.n382.z1.fidonet.org
Aaron.Feldman@f204.n260.z1.fidonet.org (Aaron Feldman) (10/26/90)
Index Number: 11341 Nadine thank you for your reply. Yes you caught the word for me.."violated and powerless". I realize that perhaps these people are well meaning but when it goes beyond saying "Yes thank you, I do have a permit" and there is still doubt and questioning, I felt I was violated beoc it appeared that according to *him* I did not qualify. I know the angry is still there. I read something that anger masks sometimes wounds to our self esteem. This I believe. Thanks again, Aaron -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!260!204!Aaron.Feldman Internet: Aaron.Feldman@f204.n260.z1.fidonet.org
Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (10/27/90)
Index Number: 11352
Hi Aaron,
I hope you are feeling better.
AF> I called a
AF>neurologist and he asked me after 2 days when he got to the phone if I
AF>felt it was a *reaction formation* since this was not the typical course
AF>of my MS. My leg was completely numb and I had painful parathesias in the
AF>back and legs and I thought "Im crazy" on top of it all. Today I have
AF>some feeling back in my leg but the rest is about the same. I have been
AF>staying to myself. What is there to say. I feel so foolish sometimes with
AF>this invisible disease.
IT IS REAL! The sypmptoms we experience with MS are real, and unpredictable,
and they vary. The only meaningful way to talk about the typical course of
your MS is retrospectively. There is no reason to expect it will continue
to behave the way it has in the past.
>Oh, the neurologist gave me an appointment in
AF>about 2 weeks to see if my symptoms will have subsided by then. The real
AF>issue I believe is the first question I was asked is what kind of
AF>insurance to you have? I said none and then I was told there would be
AF>quite a wait for an appointment.
That stinks! The neurologist I see is in the MS clinic at the local
university hospital. I don't recall ever having a situation where I needed to
see her right away. But they have things set up so that you can call with a
problem and one of the nurses from the MS clinic will call you back. That way
I get to talk to someone quickly who is knowledgeable about me and knowledgable
about MS and has access to the doctor if there is anything she needs to check
on.
Take it easy....but take it!
Adrienne
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