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From: sommers@pilot.njin.net (Mamaliz @ The Soup Kitchen)
Newsgroups: misc.handicap
Subject: Re: Lupus
Message-ID: <12954@bunker.UUCP>
Date: 20 Jul 90 04:50:28 GMT
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Index Number: 9345

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

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

>From Nadine
>  Keep on them to do kidney function tests
>(blood) - don't just let them do the care planning- you insist on
>being an active participant in your own case management.  I went
>into docs a couple of weeks ago and told them what needed to be
>done and they listened to me for a change because I went in
>assertive and not in the victim stance of whimpering and putting
>them in the god status.
>
>  Depression is the other catch-all they will use - B*LL
>SH*T - Don't let the jerks get to you.  We know when we are
>depressed and when we are not.  Don't try to compare yourself with
>
When I moved to Va I found a rheumatologist.  I didn't need one in
NJ, my various doctors were cooperating and interested in treating 
rare illness.  My new doctor and my old doctor concured that I needed
a specialist in this new state.

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

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

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

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

lizzy
-- 
lizzy
sommers@njin.pilot.net