In 1973, at
age sixteen, while living in Jamaica, WI, I noticed strange things happening to
my body. My athletic, lithe self was slowly becoming tight, stiff and painful
and I was tired all the time. This phenomenon could not be seen by anyone, but
I definitely felt it. Over the next few months, my lack of speed was obvious in
my track and field competitions and in my basketball practices. The pain and fatigue
became overwhelming and as a result I had to drop out of high school my senior
year.
A diagnosis
of scleroderma (rare disease #1) was made about a year after my initial
symptoms and the doctor told my parents I had two years to live. This time
frame was kept secret from me for about 10 years. I spent 4 months in the
hospital and my dramatic physical decline coupled with what I now realize was a
deep depression kept me in a downward spiral to the point where I essentially became
an invalid. During a period of about 8-10 years after my initial diagnosis, for
no apparent reason, I began feeling better. The darkness cleared and I slowly
began to regain my independence. With family support and by the grace of God, I
was able to finish high school (at 26), get my driver’s license (a big deal at
the time), graduate from college (at 34) get my master’s degree (at 35), travel
extensively over Europe and the Caribbean, purchase my own house, mentor
numerous children, and work in a career as an accountant for 25 years before
being hit by PAH in 2009 (rare disease #2).
My house is
right around the corner from the bus stop and one cool March day, as I left my
home to run an errand, I heard the familiar diesel engine sound of a bus
slowing down. So, like I had so easily done countless times before, I ran to
catch the bus. But this time even though I caught the bus, I was completely and
almost totally out of breath the point of near fainting. Luckily there were
available seats on the bus. After a few minutes the palpitations slowed and I
was able to relax. At my next doctor’s appointment I mentioned the incident to
my rheumatologist who immediately knew that it could probably be pulmonary
arterial hypertension (PAH) and referred me to a PH specialist.
Dr. Roxanna
Sulica from Beth Israel Hospital in NYC did a right-heart catherization and
determined that I indeed had PAH. Since then my life has taken a different
turn. I retired a year after my diagnosis and, after repeated allergic reactions
to Letairis and Tracleer, I am now stable on Adcirca, and I get tremendous
benefit from pulmonary rehab, support groups and the educational conferences
and forums.
To everyone
with PAH and/or scleroderma, realize that there are going to be stages to your
life and you will have to keep making adjustments to your “normal” every time
you experience a setback or a disappointment. However, your life can still be
rewarding and full even with 2 rare autoimmune diseases.
Somebody
once said, “If you choose to sing, you will always find a song,” and I choose
to sing.
MY BIO
I was born
and raised in Jamaica, WI. I moved to
the United States in 1983.
I retired in
2010 at 55 years old from a 25-year public service career as an accountant with
NYC government.
I now
volunteer with an organization called New York Cares and support community
service projects close to my heart, especially those that benefit the well-being
of the disabled and other disadvantaged groups.
My PAH is
secondary to scleroderma. I have experienced practically all the manifestations
of both diseases. I do not travel out of the country as extensively as I used
to, primarily because of the many adjustments needed for air travel with PAH.
There are times I cannot get out of bed, but when I can I make sure I get out
of the house. I am determined to keep a song in my heart because it makes me
feel better and reinforces my usual positive, hopeful outlook on life.
I live in
Brooklyn, New York and I have a host of family members and friends close by for
support.
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