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From: Nadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas)
Newsgroups: misc.handicap
Subject: Lupus
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Date: 26 Jul 90 19:39:26 GMT
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In a message to All <20 Jul 90 20:10:00> Mamaliz wrote:

 Ma> (I do not have Lupus.  I have a chronic disease that often mimics Lupus,
 Ma> and is also treated with steroids and handwaving).

Would you mind sharing the name and more information about it?

 Ma> I am beginning to believe that rheumatologists are just around
 Ma> to make work for psychiatrists.

 From my experiences I think they are frightened people who don't
really know what to do and try to live up to our unrealistic
expectations of them (they can heal everyone - or if not everyone
at least ME, they have just the right magic pill, they are
infallible, etc.).  A few are so caught up in their own
self-importance they have no handle on reality.

 Ma> I have been sick for over 13 years now.  We have a pretty good
 handle Ma> on what is wrong with me and how to treat it.

Yep. Most of the time I don't even call the docs cause I know what they
are gonna tell me to do and so I just do it and tell them about it next
scheduled visit.

 Ma> The new rheumatologist (highly
 Ma> recommended) treated me like a hypochondriac.
 Ma> He asked me if I was a professional sick
 Ma> person.  My roommate was with me,
 Ma> he wanted her to confirm what I said.  He asked me how I felt that being
 Ma> sick had cost me my marriage (my husband really appreciated that one
 Ma> when he got home).  I have copies of all
 Ma> the current research on my illness,
 Ma> he asked me if I was treating myself.  It was a nightmare of a doctor's
 Ma> appointment.  I came home screaching
 Ma> and crying, and immedietly called my
 Ma> old doctor (who knows nobody in VA) and asked what I should do.  He said
 Ma> I should find a new doctor immediately. 

Glad you had someone with you to validate YOU.  Many times I have
walked out of some docs office wondering if I had lost my mind.
Then I got smart and took people with me when I was going to a new
doc or something different came up.  If during the visit things got
emotional for me I had someone to tell me what happened cause I
would not always remember what transpired.  Had a doc once
(unfortunately only temporarily) who gave me articles to read about
what the other docs thought I had so I could be knowledgeable too.
He offered to go over anything I did not understand or had
questions about and said it was important that I had a part in my
care.  He was the FIRST doc to not feel threatened by patients
being informed.

 Ma> A week later the rheumatologist went to a convention and discovered that
 Ma> everything I told him was accurate.  He tried to get NIH interested in
 Ma> me (the syndrome is too rare) and tried to find a doctor in the area who
 Ma> knew about the syndrome.  He came up with one plastic surgeon.  He
 Ma> called me up, apologized, gave me the
 Ma> name of the plastic surgeon, changed
 Ma> my prednisone dosage and asked for the medical literature on my case.  I
 Ma> will probably be seeing him again soon.

Takes a good doc to put aside the old EGO and admit being wrong.  Please,
let me know how the next visit goes.
How much prednisone are you on and how long are you on it?

 Ma> It can get better.  I have stopped betting on it.  Don't let them treat
 Ma> you like a victim.  TELL THEM YOU EXPECTED TO BE TREATED LIKE A HUMAN.

You got that right!!!
Thanks for sharing....

Nadine

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