Re: help
From: Ms Lee (leenoga@cfl.rr.com)
Mon Nov 12 07:53:31 2007
>Doctors just told me that I have learn to live with my pain. I can't
>except that. Willings to go any where for help? any suggestions?
Yes, this is where it ends up.
Surgery is NOT our friend. It is something that should not be done
unless emergent [life/death]. I cringe when I see people looking for
the next magical surgery.
So many of us are double digit belly's, and my last one was 1994. The
hardest part of dealing with this disease is acceptance.
I lost so many years chasing magical Doctors, and zoning on my disease
and willfully surrendering quality of life in the process.
Now, I accept it, and focused on correct and beneficial pain management.
I tossed myself into therapy to learn to expand my small world, and get
on with life the best I could with love and compassion.
I lost decades being miserable, I lost decades blaming and looking for
the next surgery. That was the worst mistake and now I have
complications above and beyond just adhesions.
I am on SSDI and VA disability for my adhesive disease and problems.
And...
I have found peace, I have re-gained quality of life and I embrace every
day I get out of the bed...Yup, physically I am a mess but the light
bulb went on in my head years ago. I had to work at my recovery and
stop expecting surgery to be the magical cure. I had to find balance in
my life with this horrible disease and stop making it worse than it
already is.
At some point, you will find Doctors that will tell you NO MORE. This
is also the point where the emotional work begins to accept the disease
and learn to live with it. Pain management saved my life, and going to
therapy really made me deal with it which chipped away and cured the
depression that goes along with ARD.
I love you all, and wish you the best life possible. I am simply saying
I had to hold myself accountable and stop looking for a cure in white
coats :-)
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