AA - Our Own Personal Fight Against Terror
With some minimal apologies for likening what we face with
the terror in the world, I can't help but make lots of pretty valid
comparisons. Our battle with AA is so difficult because we can not fight
it like we would a "normal enemy". We have to find new and
better ways to deal with these "cells" that are not behaving in
a conventional manner.
If you have been following my story and others, you have
seen that nothing seems to work for everyone and the side effects of some
of the treatments are worse than the illness itself (spreading fear and
uncertainty as to what to do and what is going to happen next). I
will never, ever forget the dreaded "serum sickness". It
was far worse than my original AA episode and it was caused by the very
drugs that were supposed to be helping me (which, by the way, they never
did). It was like being exposed to Anthrax although admittedly not
quite as deadly (although I sure as heck though I was dying at the time).
So, as we wage this battle against the terrorists in our
body (autoimmune system gone haywire- kind of like a twisted religion
maybe?), we must constantly be looking for alternative strategies and I
encourage everyone who reads this to actively participate in the forum,
do your own research and share it with others. My complements to
Marla Brown for standing up to abuse from others while trying alternative
treatments and to Mindy and others who have held their ground with the
cytoxan strategy which sure seems to have its merit.
If there is one thing I have learned in my life, it is
this: Nobody (not even doctors) has all the right answers all the
time! We must constantly stretch the envelope to find a cure for AA
and related autoimmune diseases. And who better to help in the fight
than the very people who are being impacted the most - the patients.
I really believe we need these open discussions so that
everyone can make their own well informed decision rather than blindly
following fourth hand advice that is many years old . I saw a
posting from someone not too long ago, who said "it looks like the
doctors have reached a point where they are just throwing up their hands
and trying toxic drugs to battle a disease they don't understand"
(roughly paraphrased).
Please continue on whatever course you have selected, but
keep your eyes and ears open Share your research with others at the forum.
We will only win when everyone is fully cured and we have eradicated
this ugly disease from the planet.
And since I have gone this far, why not close with - We
need to form a coalition to fight this battle against autoimmune
disorders. I see so many similarities in the various diseases (MDS,
AA, ITP, TTP, Arthritis, Lupus, HIV, etc) yet very little information
sharing is occurring. If you have experiences with these other
autoimmune related disorders that apply, please share them at the forum.
There are many valuable links to other
sites with related illnesses. I have become an active participant at
the ITP site.
Thanks for listening and participating! |
