I really appreciated Lorraine's letter. Isn't it an odd feeling when you
find a case a lot like your own? The side-effects of cytoxin scare me, so as
long as I'm making some progress on my own I've decided to opt for no
hospitalization at this time. The Lupus-TM connection is interesting. I've
been tested three times for Lupus (each Doc saying "Well, the other guy could
have loused up the test...") and all neg. So then they say "Could be
anti-serum lupus..." Great. Let's just call it "George" and be done with it.
So, everyone, how's your George? I'm waiting to ask my Neuro if he has any
evidence that it is my immune system attacking my spinal cord, or if this is
just an over-educated guess. I can't see the wisdom of flooding my body with
an IV drug which will lower my white blood cell count and destroy my
platlettes just in case my immune system is hyperactive. It is a wacky world.
Quickly, to Bill, it must be very tough to get this "acute George" at that
young age. I'm 37 and it frustrates me to try to sit still long enough to
absorb all the lessons contained within this 'learning experience'. I've been
told recovery from everywhere between three months and three years - nobody
knows what your experience will be. For me it's been a tightrope walk (roll?)
between trying to kick the disease's butt and relaxing and feeling what is
appropriate behavior for each varying moment. The thing that helps me the
most is really appreciating what you have got and can do - and getting WAYYY
imaginative about how to do what you want to do.
I've blathered on enough. Thanks for all of you. Nurse Ratchett ain't
getting her claws on me quite yet! (With apologies to Karen for the
closed-minded occupational stereotypes I am perpetuating in cyber-space.)
Love,
Julienne