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Welcome
to the CIDP International organization
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My name is Edward Sullivan and I just turned 61
yesterday. I am a floor broker on the NYSE and a Managing
Director at Bear, Stearns & Co.. Six years ago, after
the tingling sensations in my feet and in my fingers had spread
to my hands and lower calf (and at the urging of my personal
trainer who noticed my increasing weakness and fatigue) I went
to see a neurologist. He asked me a few pertinent questions,
asked me to walk a straight line and concluded that I definitely
had a neuropathy. But which one: he couldn't tell. He then
informed me that I would have to undergo a myriad of tests in
order to determine what my neuropathy was. Six months later,
after seeing a half a dozen doctors, countless blood tests, EMG,s, a spinal tap and finally a nerve biopsy, I was diagnosed
as having CIDP.
All during that time, I was slowly falling
apart. The symptoms had spread: numbness of the face and tongue
(a Porterhouse steak tasted like cardboard). I had double
vision and became exhausted after walking just a few feet. One
vivid memory I have is attending a dinner with several
clients and during the dinner, which I couldn't taste, I
proceeded to spill a glass of red wine all over the table. The
guy sitting next to me thought I had had a little too much to
drink, but in actuality I couldn't tell which end of the wine
glass was up. My position as a floor broker was in jeopardy, for
I made my living on my feet and they weren't working that well.
I would wobble to a trade and close one eye in order to see
things as they really were. At work (and even on the street)
people would stop me and ask me if I was OK. And there were
times l had to leave work because I couldn't control my
bowel movements. Not a pretty sight. I was taking days off from
work and for a short while I was placed on disability.
After my first IVIG
treatment, which was a five hour drip at my home for 5
consecutive days, I felt better than I had felt in a very long
time. I even had the crazy idea that I would go to a trader's
convention in Hilton Head and play a few rounds of golf. After
all I was dating a much younger woman who was in the business
and loved to play golf. So I went to Hilton Head, played golf,
danced, drank and had a great time and when I returned home I
was completely exhausted and wound up in the hospital. My sister
and a few close friends came to see me and they realized for the
first time how sick I was. My family, along with some very close
friends got me through some very rough times. In the words of
Diana Barrymore, it was "Too Much, Too Soon."
It's been over 6 years now and I have come
to terms with my illness, or rather my illness has come to terms
with me. At present, along with the IVIG, I also take azathiaprine, cellcept and
prednisone. All these drugs enable me
to function as a floorbroker and I am thankful for that. Some of
the lesser symptoms still remain and my body requires periods
of rest. Being a single man, I live alone and when my illness
dictates, I have the luxury of resting after work and/or on
weekends.
I feel that the only thing constant in life
is change and that those people who can readily accept change
have a much better shot at overcoming adversity.....in other
words, "Play the hand that you're dealt." But always remember:
unlike the poker games you see on TV, you can't bluff life.
Sincerely,
Ed Sullivan.
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