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From: Linda.Thompson@f34.n129.z1.fidonet.org (Linda Thompson)
Newsgroups: misc.handicap
Subject: Re: DISABILITIES
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Date: 18 Jul 90 20:56:06 GMT
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Index Number: 9295

Hi -- just logged into the echo and recognized your smiling typing
from the Ga. Forum.  For what it's worth, I have a string of
disabilities that sound more disabling than they actually are
(acromegaly, diabetes, limited motion in left hand/wrist, bum knee
& back that puts me in and out of a wheelchair), but it actually
came as a shock to me the first time I was referred to as having a
disability.  I don't look disabled (to me).  I just learned that
being an ACOA is considered a disability, too, so add that.
Harumph.

Anyway, why I am writing you is I noticed you have
lupus/diabetes/rheumatoi d arthritis and thought I would pass on my
experience with getting my own disease diagnosed.

Acromegaly, when it affects children, causes "gigantism" -- the kid
gets REALLY big.  In adults, however, it is an insidious process
(much slower), but the person appears to be aging too rapidly.
Many people mistake the changes for old age (dry skin, aching
joints, unbelievable fatigue, changes in the shape of the feet,
hands, jaws, weight gain.)  I went from doctor to doctor, not
believing that a person who is normally pretty hyper could feel
THAT BAD all the time.  I didn't think it was "all in my head" --
I'm not normally a depressed person (but not finding out what is
*REALLY* wrong causes its OWN depression).  During the course of
attempted diagnoses, I showed up a high positive on a RA titer test
(one of the tests for rheumatoid arthritis and lupus).  I was
variously diagnosed along the way as having: Hodgkins disease,
lupus, MS, RA, among others.  Finally went to a medical school
library and studied and studied, determined the tests that would
eliminate the various diagnoses (or confirm them) and went to a
doctor with pictures of how I had changed in appearance over a five
year period (I grew 2" in height, gained 70 pounds, two shoe
sizes).  Acromegaly causes diabetes, too.  FINALLY they got the
diagnosis right.

Anyway, as a consequence of the mis-diagnoses, I became well
informed on lupus (even joined the Lupus group in Indiana) and
rheumatoid arthritis (my high RA titer is more likely attributable
to actually having had rheumatic fever as a kid...).

Apparently, many doctors still view lupus, MS, acromegaly and
diseases caused by various hormone disorders as exotic because it
sure was hard to find somebody who knew enough about all of them to
know which ones I DIDN'T have and what I DID have.  Mentally, it
was a major relief.  The active phases of acromegaly come and go,
too, and it is pretty similar in its effects to lupus (when it is
active, muscles grow and get disproportionately strong with no
exercise, kinda like megasteroids, however, this is incredibly
painful, causing joint aches, muscles aches, etc. at different
places, different times -- you know the "all in your head" scenario
of moving pain...)

 From the many people I now know who have lupus, MS, and RA, it
would appear that my experience is pretty common.  What are they
teaching these guys in medical school, anyway?  For me, diagnosis
was 90% of the "cure" because I changed my mental perspective a lot
from then on -- I knew what I was up against (I had met the
enemy...) and I could and would deal with it.

It's not fair for you to compare yourself to your counselor in the
wheelchair.  We each get our own cards dealt to us.  Having been in
a wheelchair (pregnant, too) and limited, I was still able to
attend college, take care of my kids and have foster kids -- I
*COULDN'T* do much of this during the active phases of the
acromegaly because of fatigue.  Pain causes fatigue.  Fatigue
causes depression.  Depression exacerbates fatigue and pain.  When
you compare yourself to your counselor, you are comparing apples to
oranges.  Give yourself credit where credit is due and don't be so
hard on yourself!
 # Origin: Atlanta Medical Forum -- (404) 351-9757  (8:7301/204)

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