Sandy,
Having read of your struggle to keep on coping with the terrible effects
of this chronic illness, PD, I find my heart pounding at the injustice of
your situation. When I think of my own shock and disbelief at the neuro's
words to me, "You probably have Parkinson's, but at 47 you are too
young....", I find it difficult to imagine what you felt at age 28 that you
had this chronic disease.
When I read your posts to PIEN, Sandy, I always detect behind the
complaints a strength and tenancy to take what you have and do the best you
can. If you are ready to battle capital hill in regards to prescription
drug coverage for disabled and retired social security recipients, then
those on the hill WILL HEAR you ROAR!! GO FOR IT, SANDY!!! Please let
those of us within the list family know what we can do to assist and inform
our congressional reps of the necessary legislation.
Jeanette Fuhr 49(until tomorrow)/47/44?
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From: Sandra Norris <[log in to unmask]>
To: [log in to unmask]
Subject: STRUGGLING!!
Date: Tuesday, September 26, 2000 7:20 AM
Good early morning list family,
It is 3:11 early Tuesday morning and I am struggling with a few
things...May I use your shoulder a bit?
Many of you know I have recently moved into my own apartment. When I was
packing things up readying my "stuff" to be moved I came across the video
that my 2nd neurologist had made of me when I was finally diagnosed. When
I unpacked I stuck the video in a closet. It was neither out of sight nor
out of mind. I placed it in a closet that is a pantry to my kitchen and
because I love to cook I open this pantry quite a bit. I have been in my
apartment now 1 month and 8 days and I have been struggling with whether or
not I wanted to watch it.
I finally watched it this morning around 1:00 am.
Having many mixed emotions, I am desperately trying to sort through them.
You see, leaving my husband and embarking on an independent life has led
me to a path of uncertainty. Struggling with the question in the back of
my mind of just how much the pd has progressed....struggling whether I buy
food today or I buy medicine today...struggling with my neuro about pain
management. Being outraged over the unavailability of help for acquiring
medicines. My local neurologist has referred me to my 2nd neurologist at
the Bowman Gray/ Baptist Hospital at Wake Forest University. I feel as
though I have been backed into a corner over the medication issue that all
of us are having to struggle with. Well I have decided to come out of that
corner fighting!!!
Please family, listen with the passion that beats in your heart....We need
to make an impact on Capital Hill. I shared with my local neuro the
passion of my heart of "come hell or high water" I will be going to Capital
Hill with a voice to be reckoned with. I am proposing to my neurologist
that the media come into my home and document through word and film my life
with medicines. Then I will go on a drug holiday (only if neuro approves).
(Yes, I know what this will entail) It will be dangerous. While going
through the holiday I will have the media document and film what I will
look like without meds. No one and I mean No One should be faced with the
questions Food today? Meds today?
Family, do not get me wrong....I am blessed and thankful everyday for what
I do have. Yesterday I did get word that I will have help with food.
Still yet...drawing $736.00 a month disability and the cost of meds $620.87
does not leave much to live on. Before getting notification of help with
food I was faced with 9 days without food. That would be dangerous to my
health as well.
Before I could get assistance I had to sign over my rights to the house and
land that I jointly shared with my husband that I am now separated from. I
can not have anything of value that could be sold to help with meds and
food.
Another thing. Hopefully there will be some valuable information gleaned
from this drug holiday. Watching the film of my diagnosis was an eye
opener. To document the progression of this disease since diagnosis will
serve as valuable info for the pd community.
I know there will be legal issues...emotional issues...spiritual
issues....medical issues. I am working on the legalities...I am seeking
counseling on both the spiritual and emotional aspects of this
challenge...Having a stomach virus one year ago I could not keep pd meds
down. I had to be hospitalized in critical care...feeding
tube...catheter...using the sign language of the alphabet(shakily) so I
could communicate after my jaw froze from rigidity and tremor. I will be
going into this with eyes wide open.
Because of my meds I can cook. I can walk two miles a day. I can pick up
my neice and hold her and help chase away her hurts. This past Friday,
because of my meds and my own wisdom of not eating anything with protein, I
was able to dance for the first time in nearly 6 years. I mean from 9:30
pm to 1:00 am I cut a rug! Let me tell you, I wrote a whole new verse to
the song "Let's Give Them Something to Talk About". I am very thankful...
Without meds....I am a frozen vegetable..or better yet I will be a slab of
cement that has already gone through the stages of drying and now allows
the federal government to walk on me with blatant disregard.
This wall of injustice being erected, brick-by-brick by the lack of
prescription benefits is holding me back from living life with dignity.
The buck is gonna stop here. If I have to tear the wall down
brick-by-brick then I will. I refuse to be held back and I refuse to walk
around the wall in denial of the sad state of affairs of Medicare.
I have had my say...thnks once again for letting me vent...sorry it was so
long....I am in the process of getting my ducks in a row. Please don't call
the loony wagon. I have already fought and won that battle...much
love...and admiration for those who are passionately continuing in your
battle....
Keeping up the fight....
Sandy Norris 40/28/20
"Faith is the daring of the soul to go farther than it can see."
