Jenn,

I stand with Kat on this issue.  If you didn't care for Joanne's advice, hit
the delete key and go on.  I DO know that pain makes one angry at
anything/everything, so I'll be bold and extend grace to Joanne on your
behalf.  Having wriiten that,  it's been my experience that precious few
docs and laypeople understand what true chronic pain is like.  You can't
speak to it unless you've been there yourself, right?  There are a number of
physicians and friends who have said some pretty inane things about the
relative severity of my own pain.  Sometime's I'd like to put their
testicles in a vise and give the handle a few good turns--bet they'd see
things from my viewpoint in a hurry.  So, I do know how frustrating that
day-in, day-out never ending agony can be.

Just remember this:  If Joanne didn't give a rats arse about your pain, she
wouldn't have bothered to respond at all.  Sometimes, true things are said
that make us mad and hurt.  Doesn't mean that they still aren't true.

I think what you might be looking for is not advice, but agreement.  If
that's what you needed, then by all means, state it.  I know it can seem
that everyone is out to "get you" when you have a frustrating issue, but you
need (we all need) to be able to get past that and discern if the writer is
just babbling on or really has our interests at heart.  I think Joanne went
out on a personal limb to write the things that she did, right or wrong.
Gotta give her credit for that.

I'm a good deal older, and I know that our affliction (CP) can bring out
heaping helpings of self-pity if we're not careful.  Beleive me, I've had so
many pity-parties for myself I could become a self-pity event planner.  So,
try to see beyond your hurt and examine Joanne's note for truth.  It's a
hard thing to do, but you'll be the better for it on the other side.

We're still in there with you, Jenn.

-Kyle

-----Original Message-----
From: Jennifer Zubko [mailto:[log in to unmask]]
Sent: Sunday, April 21, 2002 9:43 PM
To: [log in to unmask]
Subject: Kat


Kat,
All I asked was an opinion on if I should write the doctor at all. Thats it.
NOTHING MORE. I would appreciate it if my time in hospital/the testing
itself were not guessed about because I was the only one there/ getting
diagnoses. They gave me the diagnosis of dystonia prior to any trial, and
the Dr./nurse/PT kept admitting TRIAL BY LUMBAR PUNCTURE would not help with
dystonia. I remain thankful I did not have surgery with them because I would
never had been given enough drug to deal with my problems.I remain thankful
that my next doctor knows about CP/SDR and Dystonia. Perhaps I will stop
asking questions here FOR AWHILE.
Jenn