Re: Digest Number 1451

May 6, 2002

Deborah,

Your attitude about this disease is so uplifting and encouraging, and that

has to make life a lot more tolerable for you and for those around you,

especially your husband. I wish the person who asked you that ignorant

question could read or hear your comments. They could surely benefit from

your wisdom. Keep your chin up and God bless you. Indeed He does have a

plan and a purpose for all of us and we must keep the faith.

God bless,

Mamie

<<

Message: 18

Date: Tue, 30 Apr 2002 08:04:55 -0400

Subject: Re: Re: [Deborah and BelindaMSA] Re: RE : (MSA) : DEBORAH

Barb,

As long as you keep laughing, go whatever way that feels right. You have

earned the right.

We suffer so much from these various forms of PD+ whether we are the

patient or the caregiver. So much of our time is spent in pain and

suffering and dealing with the everyday reality that is put in front of us.

With our bodies supplying all the negativity and anyone could possibly think

that " someone else " could handle in a lifetime, we have no choice but to try

and get through as best we can. We are all crying inside.

We hurt for ourselves, or love ones who may or may not understand what we

go through and we grieve for all the " might have been's. " A lot of us,

including myself, have chosen not to respond in anger but to accept that God

has purpose and meaning for our lives and he in his infinite wisdom will use

us for his good. So many times I have said and have herd others say, " Why

me? " with the answer always being, " Why not me. "

I was enraged yesterday when a person who has no idea what this disease is

all about told my husband and myself, " What is the use in winning the battle

if you are going to lose the war? " It took a while for this statement to

sink in and when it did I was surprised by how much it bothered me.

WHAT DIFFERENCE? I'll tell you what difference.... the difference is that

every battle WE win may be one less battle someone else does not have to

fight or does not have to suffer so much when they fight because someone has

gone before them and might have an answer to help them through.

The point I am trying to make is that I refuse to give in to this disease

and become it's victim. I will laugh at it, fight it and take charge of it

in every way I know how. Humor is not a disguise that I hide behind but an

armor that I use in combating it.

We have to find things to laugh at. We have to dig deep to find joy.

This disease that is taking our lives or our loved ones lives can't take our

spirit or our hope if we don't let it. So lets keep sharing the joy that we

can find all the while supporting one another through all the negatives that

are laid out in front of us everyday.

Hugs & Warm Fuzzies

Deborah aka Tenacity Wins >>

May 9, 2002

Mamie,

Thank you for your sweet post. Everyone's prayers are what is keeping me

alive and I know that.

I did have some fun with the " ignorant " doctors (wound up that 2 argued

with me about my body temp.) before I left the hospital. Fortunately, my

PCP's father had PD for 16 years and is well versed on low body temp. He

wrote an order in my chart that if my temp reached 98.0 that I was to be

given 2 Tylenol immediately. The last two days in the hospital my temp went

back to my " normal " level. I even had the aid put it in my chart when he

took my temp and it was 97.5 AFTER drinking coffee. Ironically, my temp

averaged 97.2 towards the end of my stay... a .2 lower than my normal... I

had to laugh.

I'm home now and recovering again.

Hope you are doing well,

Deborah aka Tenacity