Re: Taking Back Your Life
From: Ms Lee (leenoga@cfl.rr.com)
Sat Oct 30 17:35:01 2004
Dearest Jeanne,
YOU are absolutely correct! You have brought out a fantastic topic that
I think we both can really place some perspective for the other readers.
Condition validation is a horrific battle that needs to be won with each
individual. The Doctors really want to believe if they cannot document
our problem we have NO problems and just looking for narcotics. So they
do the darvocet, ultram, or some anti-inflammatory instead of comitted
pain management.
This is more the rule than the exception and for those reading along who
have finally reached out to us here, expect rejection.
If I have to see one more psychiatrist, I am going to go postal nuts in
the offiuce to justify the time spent with them. I am a woman, so
therefore it is in my head, and out come the insults,"You having
relationship problems or job issues?"--This makes me insane.
So what did I do, I suffered because NO ONE believes me! Why? Because I
have a great attitude and just am not pathetic enough to believe because
to see me live my life you would never think there was anything wrong
with me. So having a postive attitude works againt pain management
support with Doctors.
In Jan 2004 I was diagnosed with the fistula's. For the last 4 years I
have been perscribe percocet by a primary Doctor that took my word on
faith. I really thought I was blessed. Last Dec. he pulled the wool
out and basically told me he had reservations about my need for
continued pain management. I was devastated and had no idea how to
prove my case.
Long story short, he ordered the most extreme work up, and I failed the
upper GI and small bowel follow thru, the barium was expelled before it
ever reached my right side of my colon. First time I actually was
elated I failed a test but it was more like I felt relief because now
they know I am not crazy making up stories. I have no reason to
celebrate a double fistula finding but ya think I acted like I won the
lottery.
Note, the test was repeated a second time that SAME day, and the test
came back NORMAL and showed NO shortcut. Imagine had the first run at
this GI test been normal, they would have NEVER believed I had
fistula's. YET, even finding this finding, the CAT scan was normal, the
barium enema was normal.
There is NO test that shows adhesions and Docs always want tests which
would only show other organ compromise, it does not mean the adhesions
are not freezing the bowel or yanking when we move.
In closing, my pain and my adhesions are really triggered by exertion
and exertion topples the domino's when food is involved. [dumping] I
failed the first GI test because there was a 30 min wait between films
and I went into parking lot and walked around and around the building
and let that barium slosh around.
BINGO, the walking agrravated the adhesions, the fistula's opened and it
got documented on film. The second upper GI and small bowel follow thru
they did 2 hours later was normal because I sat in a chair between
films.
THIS is why alot of us have normal tests when we are quite ill. I would
suggest any reader who has to have GI series, talk to the doc and
radiologist, share your triggers and ask that these triggers be
considered at the time of the test!
Understanding what sets our condition off is critical information for
the Doctors. Pain mangement is everything, and if your Doctor is not
comfortable with this idea then one has to go to a pain management
clinic.
Once our Docs can believe in what we say, give us the pain management we
have to have, the rest of the disease management is all up to us, and
that decides qualtity of life :-))
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