Re: Deborah and all

[Guest guest]

Deborah and all,

I and many others will be here for . I know I will until it is

my time also and then I will come cloud hopping with you unless I go

first and then you can come cloud hopping with me. No one knows when

their time will come not even the ones who aren't sick. Life can be

taken away from any of us in a twinkling of an eye. That is why it is

so important to treat others with respect, not do anything

intentionally that will hurt someone (medically, physically, or

emotionally). In Support groups like this emotions are often worn

upon the sleeve (or is it arm)? Oh well, you know what I mean. We

won't always talk about MSA, we will talk about flowers, a good time

someone had, anything someone needs to talk about and share with the

rest of us. That I believe is what we are here for also. We have

developed friendships here and it is a wonderful thing. Also, I have

not been on as much as I had been. If someone has joined that I

haven't welcomed, I am sorry for the reason you are here but rest

assured you have come to a wonderful support group. I hope you know

that you can ask us anything and we will be there for you.

God bless,

Belinda

> 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

>

> --------------------------------------------------------------

>

>

> 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 experimental 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

>

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