about being disabled, old and having some discretionary time--at last!

[Guest guest]

My type of cystic fibrosis is such that despite extreme brushes with death,

Bar

rett's Esophogitus, benign Multiple Sclerosis (multiple surprises!),

arthritis and

too many join replacements, it was not cystic fibrosis that gave me the time

to

be at the computer as I choose. First, I had a rheumatological disease,

caught

by my wonderful cystic fibrosis doctor at Stanford, Dale Umetsu, M.D., and

was

on low dose prednisone for sheer survival for three years, while continuing

to work,

and then was ultimately beaten within an inch of my life by a berserk

third-in-

command administrator at the agency at which I ran one of the programs. The

man nearly killed me, and I thought that, having survived that, I would just

continue

on working in medical administration and neuropsychology and part-time

research

until a series of truly dreadful things happened and I had to return to

Stanford in

real desperation. I could not work, nor do anything else. I had acquired,

as it turned

out, Reflex Sympathetic Dystrophy, and had, by late 1991, lost the use of

both

arms and of both hands--a big psychological trauma, as I am a survivor of the

last

of the us polio epidemics in the early fifties. I began lidocaine injections

in the

neck to calm the sympathetic nervous system: 6 on the right side, 7 on the

left side,

and daily physical therapy at Stanford, where my genius physical therapist

brought

to me some hope of regaining some use of my hands and arms.

I am also a professional musician, played 13 instruments, and could then play

none

of them, and now few, and wondered whether there was any point to going on

with

my body. But things got better. By 1995, I was able to drive; I could not

write un

til 1997, ordinary printing or cursive; by 1999 my rheumatologist assured me

that I

just might make a recovery that she had never though even remotely possible,

but

that it would not be complete--and it has not been. But here I am. And

meanwhile,

I had begun my joint replacements--so in between MS episodes, surgeries and

physical therapy, I was a busy old salt. But, friends got together and gave

me my

first computer, and at first I used voice technology and finally got to the

point where,

as is notorious, I began to type again. Having always been one of the most

dex

trous and mechanically-minded people I know, the frustration had been very

great,

and now I finally had the feeling that my life just might have been given

back to me.

And, I have a wonderful " significant other, " (hate the term), and my kids are

as sup

portive as one's kids dare to be--so that is all about how I " found the time "

to do

all this web-searching, etc.

I do hope that I have not bored you all with this, but it seemed rather

relevant to

explain my circumstances: my children, even the one with cf are grown and

out;

my husband is deceased (died of a rare form of liver cancer--very hard on the

kids).

I have a great many friends both in Berkeley and in Portland, Oregon, but

life seems

good once again--I cannot believe that I am actually still kicking; I nearly

died of a

very rare pseudomonas in 1991--but here I seem still to be here--perhaps

thanks to

people like all of you on my favorite groups and lists.

Thank you for putting up with this--seemed relevant, somehow