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."