Deborah

July 1, 2002

Deborah,

I do not think that most people in here realize what you had to

endure since you have become sick. I do not believe anyone else in

here has gone through the DBS (I think that is what it is called).

You were told you had PD and went and had experimental surgery where

they cut your skull off your head and input a plastic program in your

brain. It worked for a few days and then you became severely ill.

After having the expermental surgery those doctors didn't want to

help you anymore and wouldn't even see you because you were not a

success but a failure to them. You weren't something they could go

brag to the world about. When they turned you away you went to

another hospital where they put you on so many drugs they almost

killed you to where to this day you can't take meds like the rest of

MSA'ers because you break out in hives and end up in the the hospital

for days,weeks or more. I might not have all the details exactly

right but I am close. You have not shared all the horrors that you

have endured because of PD and MSA. I admire you more than anyone

else. I think you tried to help research by being brave enough to say

ok I will do it and if it helps me wonderful because if it does it

will help so many others. You are also a very loving person who even

though you endure so much pain day in and and day out you still want

to help others as much as you can. I know you are not perfect but in

my book you are pretty close. I love and admire you for the person

that you are. I completely understand why would have hope that

you will get better. You are the love of his life just like all the

rest of the sick on here are the love of someone else's life. Not

everyone on here is going to have the exact same symptoms, the exact

same medicines that will help them, and the exact same cures that has

helped others. There are some things that are similar but very few.

If they were all similar it wouldn't be so hard to cure this disease.

If someone has pain it isn't always going to be a urine infection it

could be something else. I think everyone on here should always check

with their doctors to make sure what is going on with them is what

someone on here said it could be. It is good to get suggestions

because it very well may be what someone on here said it is but there

is always the chance it isn't also. My doctor told me that everyone

can have different symptoms but have the same thing. It doesn't mean

they don't have what they have been diagnosed with it just means they

have different symptoms. No one but a doctor can say yes you have or

not you don't have. This is what I think and believe. I also want to

help others but the best thing I know to do is just give out support

and let you know that you are not alone in the fears and tribulations

that you are going through. There will be someone else in here going

through the same thing. It might not be just the sickness, but

financial, or having to deal with people who don't understand your

troubles. I pray for all of you. I might not pray for all of you by

name but I do pray for you all.

God bless you all,

Belinda

July 2, 2002

Dear Belinda and Deborah:

I have read both your posts several times and I find myself in awe of

the courage you both show. Both of you are dealing with what life has dealt

you the very best you can, and you still find the time to help others.

Deborah: I am praying that when you come off the steroids this time,

things will turn out differently, and you will be somewhat better instead of

worse. You have certainly given it your very best effort for a very long

time, and your decision to let go makes great sense to me. The time does come

when we all have to let go, but it is very hard for those around us who love

us, as I imagine it has to be for you. I think I speak for all of us on this

LISTSERV when I say that we will all be praying for both you and as

you go through this most difficult time. Belinda is right: you are a really

special person and so is .

God does indeed wok miracle, and I pray that one does come your way.

Love and hugs and prayers,

Barbara

July 2, 2002

Belinda,

Wow, thanks. I don't know if I am deserving of such high praise. I was

just trying to help myself and others at the same time. You got most of the

details correct. It was the doctors that treated my infection in January

that caused me to go toxic and then would not treat me after they further

messed me up. (I was sent away with a temp of 104.8 with a Rx for a topical

ointment and benadryl). The next day I was in intensive care and read my

last rites. It was the doctor, my internist, here in Charlotte (3ed & 4th

hospitalization) that saved my life. (He stepped into a huge mess and has

worked very very hard to get me back to at least where I was before.) He is

still trying.

Yes, it was experimental surgery... to see if it would help those with

MSA.... and yes, I became the 1/100 bad statistic. It did really mess me up

and I have yet to recover from these traumas to my body. That on top of

having a degenerative brain disorder has taken its toll.

Thanks for taking up for me Belinda. I do my best to stay out of

arguments or having to explain myself over and over... that is why another

post went unanswered by me. I'm sick, in pain and doing the best that I can

to get through today. I have no time for pettiness or defensiveness or

proving myself to anyone. My time left here is short and I plan to live it

in a positive manner.

This whole thing got started because I have reached the point where I

accept that this is terminal, that it is MSA, and that I no longer want to

" try this " or " try that " .... I just want to treat the symptoms and enjoy

what time there is left.

There will be no more hospitalization for me... no more heroics to keep me

alive when things go wrong. I have but 3 weeks left on steroids and then

the clock starts ticking. I have been on steroids all but 2 20 day periods

since February. 20 days after discontinuing them both times caused my body

to go nuclear on itself and resulted in a long hospital stay with all the

horrors that happen there.

I'm on my 3ed round of steroids... been on them since May 1... when I'm

through with this round....there will be no more!! I wanted those here who

have gone through what my loving husband , my caregiver, has, to give

him support that he will need in accepting my decision.

God does work miricles and my faith has not faltered. Maybe this time

there will be no reaction after 20 days.... but if there is one... I won't

go through what I have had to endure these past 6 months again.

Thanks Belinda for taking up for me and saying what I hadn't. Maybe by

your words others can understand a little better.

Hugs,

Deborah aka Tenacity

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