Becky
I get everyone's posts in my email except my own.  I haven't bothered
checking it out.  I am sure there is a reason like some box not checked off.

Original Message -----
From: "REBECCA DILLAHUNTY" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, April 26, 2002 4:19 AM
Subject: Re: Snap, Crackle, Pop and Itch


> Somehow I get the messages from Bonnie Clay Riley but no one else from the
list.Any solutions for this??? I am subcribed as Rebecca Dillahunty.
> Thank you ,Becky
>
> ----- Original Message -----
> From: Bonnie Clay Riley
> Sent: Thursday, April 25, 2002 4:47 PM
> To: [log in to unmask]
> Subject: Re: Snap, Crackle, Pop and Itch
>
> Deb, reality sucks.  I have no words that could possibility express my
hope
> for you.  I have this ancient Irish prayer written down. This is for you.
>
> Deep peace of the running wave to you
> Deep peace of the flowing air to you
> Deep peace of the quiet earth to you
> Deep peace, deep peace
>
> Bonnie
>
> ----- Original Message -----
> From: "Deborah Setzer" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Thursday, April 25, 2002 1:01 PM
> Subject: Snap, Crackle, Pop and Itch
>
>
> > Hi,
> >
> >   I just got back from the doctor's office.  I was told that my rash is
> > because of my PD+ (MSA), specifically that my immune system is not
> > functioning correctly.  I was advised not to even go in our hot tub
(which
> I
> > just got back into working order day before yesterday) or even a
swimming
> > pool because I am likely to have a reaction to the chemicals in it.
> >
> >   He also told me that my snap, crackle and popping is probably due to
> > osteoporosis but again, because of the other problems that I have, he
did
> > not see the use in ordering a bone density test because regardless of
the
> > results, he cannot put me on the medications available to fight it.  He
> > reminded me that I am still unable to even take vitamins.
> >
> >    He gently reminded me that the MSA is causing a lot of the different
> > major organ systems in my body to not work right. He is a very kind
> doctor.
> > He always spends a lot of time with me and answers any questions that I
> > have.  He looked truly sad when he told me that he doesn't have any
magic
> > answers.  He ordered a number of blood tests (He wants to check my liver
> > function and current immune state among a list of other things) and
> > increased the dosing on 2 of my meds (famotadine & zyrtec) but is being
> very
> > cautious about adding any additional medications until after the blood
> work
> > comes back because he is afraid that I might get an even worse reaction.
> >
> >   I talked to him about all of my left over medications and he is part
of
> an
> > organization here in Charlotte that helps those who cannot afford meds.
> He
> > said if I brought him all of my unused medication the he can promise me
> that
> > it will get into the hands of someone who needs it legally.  Maybe
others
> of
> > you have such organizations in your area both for donating meds and
> > receiving them.  It's worth a call to your doctors to find out.
> >
> >   I don't know why, by now, I haven't figured out when I go to the
doctor
> > they are not going to give me some magic pill that will make me well.
> > Because of the botched DBS and the resulting infections that I had
earlier
> > this year, they cannot even give me anything to "make me more
> comfortable."
> > Taking 1 darvocette for the pain 3 weeks ago necessitated me going back
on
> > steroids for a week.
> >
> >   I'm glad ya'll are here.  I have to admit something to all of you so
> that
> > I can have the courage to face it myself.  I won't be able to have the
DBS
> > redone for my PD+ (MSA.)  I was scheduled for July 10 (penciled in) but
> the
> > reality is that the MSA is progressing, I'm not getting better.  Harder
> than
> > that to face is that I'm not even over what my body went through from
the
> > brain infection in January, no bad how much I want to be.  Reality is if
I
> > can't even take a darvocette...I would never live through the general
> > anesthesia for the DBS.
> >
> >   Once again, I find myself back to that point of having to accept that
> this
> > is as good as it is going to get and I'm going to have to deal with it
and
> > be thankful for what I can do and what I have done. (Denial is so much
> more
> > fun than reality)!
> >
> > Deborah
> > aka Tenacity
> >
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