that was. So, after going on
Google I decided to go to one of
the biggest sarcoidosis clinics in
the US called Mt. Sinai Manhattan.
They made sure they had all
of my records even from Florida.
The doctor then showed me
the results of the biopsies in
2004 and the most recent. They
matched exactly. I have never
had lung cancer! I went through
four years of the worst torture a
person could go through at the
time.
When I found out I had sarcoidosis,
it was late in the diagnosis
process. I already had it in
75% of my body. You see the
chemotherapy helped the masses
not grow, but the radiation
weekend my immune system
and because of that my white
blood cells went into overdrive
and it traveled to other parts of
my body.
Unfortunately, none of the treatments
have had an extended relief
for me. I have tried all different
medicines from Methotrexate,
Prednisone, Plaquenil,
Remicade, Humira, and IVIg
some worked for a small amount
of time, but then my body went
back in total pain and swollen as
well as heart activity, and neurological
damage.
For the parkinson's once I was
diagnosed in 2016, I have been
on Carbidopa-Levodopa. It has
helped me with my tremors, but
my brain has been suffering with
memory loss, and hallucinations.
I have been a patient advocate
for 8 years now. When I went to
my first RDLA award night I
was talking to a couple of doctors
and the head of the NIH at
the time. They all told me we
have one of the highest amounts
of people in the rare disease
field, but we get the least
amount of money, when they
say the least, they meant not a
penny. I thought that was crazy.
So I set my mission to get the
government involved by first
raising awareness by making
April sarcoidosis awareness
month. I was able to get my
town to first sign the proclamation
for sarcoidosis awareness
month, then I worked on our
county which was very happy to
help in more ways than just a
proclamation.
They had the health department
put in their monthly newsletter
to all of the doctors in Suffolk
county a new fact about sarcoidosis
for a year. Then New
York state was soon to follow
but made a resolution that now
makes April sarcoidosis awareness
month forever. I had a proclamation
up in the Senate in
2016, but the parties didn't want
to cross endorse so it has been
on hold all this time. Between
the work of myself, the National
Sarcoidosis Organization, and
Foundation for Sarcoidosis they
are receiving money for research.
Absolutely, I have changed as a
person because of my experience
with chronic pain. I still
have the drive but I never know
how I am going to feel from day
to day. I have to be more patient
with my body, and also know
my limitations even when I am
having a good day because it
may take me more days to recuperate
than normal. On the good
side I met some amazing people
who I can call my friends and
rely on. Also, I don't sweat the
small stuff anymore. One last
thing, it gave me a purpose and
reason in my life. The main
thing learned is to be your own
(Connued on page 25)
Internaonal Pain Foundaon—23