Although I am almost 64, my health and stamina has been
that of a much younger person. Always had more energy and get up and go than most of my
friends. I was a Flight Attendant from 1956 to 1960. (Second Hand smoke?) In those days
even the crew smoked in the cockpit. Was married and settled down to raise a family. Had
the opportunity to work for a small clothing boutique in my town, and after seven years of
learning the business, I purchased the store, and after two years, opened a second
location which required 7 days a week. I had one full time person and 2 part time
employees, but all the work of buying and organization, plus buying trips to NY fell on my
shoulders. I loved it. My family was growing, and my husband was busy in his career so
they felt mom had found her glamorous niche. I worked, found time to ski, ride horses,
plant my flowers, and I felt great. In 1992, while on a trip to Florida, my left hand and arm
began to experience tingling. When I would drive the car for a few hours I had to stop and
shake that hand to get the circulation going. When I fell asleep at night, I would wake up
and that arm was numb. After driving ;home, I went back to work, and the problem persisted
at night. I would get up and go the kitchen, and walk around the counter shaking my arm.
Then it started to happen during the day at work while moving clothes around and lifting
hangers. I called my doctor, and did explain about this feeling but also the color of
purple was happening, and when I was in my best outfit, and at the supermarket, my fat
swollen hands reached for the bottle of salad dressing, and low and behold, it went
crashing to the floor. He had me come in, looked at my hands, and sent me to another
doctor for electronic tests and confirmed carpal tunnel. Off to another doctor and yes I needed my hands operated
on. So I had one and then the other 30 days later. This is the end of my problem. No way.
But 1996 it was confirmed that Raynauds was present because my fingers were still swollen,
and my hands and feet were very cold. Had to use warm ups for my ski mittens. My
fingernails and toe nails had a fungus, and I was seeing very dry patches of skin on some
places on ;my face. Also, I was experiencing some swallowing problems, but did not know
what was the cause. Felt maybe the stress of the business was a factor. We had purchased
the buildings in which my shops were located, and had tenants. So with the in and out of
people, the growth of my business I felt maybe I was working too hard. Although I was not
slowing down, or felt tired, I did begin to see a weight loss. Once again back to the doctor for a physical. He looked at
the fingers and toes, and also realized every time I got a cold, it seemed to turn into
pneumonia. He said I may have Crest Syndrome. What is that? Never heard of it or read
about it. I was sent to a rheumatologist and she examined the skin, toes, hands, did all
kind of flexible twist and bends of the body ;and limbs. Also sent me for blood work. Went
back after 2 weeks and she confirmed Crest Syndrome. Wanted me to have test done at the
hospital to examine the esophagus problem of swallowing. Then I learned about the buildup
of collagen that builds up and deposits itself in the skin and organs. Since I had paced
my body on my ability and my food intake on my ability to swallow, I guess I was doing all
the correct things. Since there was no medication, and really no advise she could give me
other than keep doing what my body tells me. My question was what will happen in the
future. Will this get worse, will I have breathing problems, joint problems, what do I
look for and will it progress. She gave me a booklet from the Arthritis foundation with
information of arthritis and scleroderma. She could not tell me it would not get much
worse, because I was much older when this was discovered, and still very active, so I have
a good chance for not having the symptoms get much worse. But with any tissue disease one
never knows. Since we do go to Florida every winter, it does help to
get out of the cold. In l996, I picked up the Sarasota Times. and in the health section
was a full page article with pictures of a woman in Florida who has battled scleroderma
for most of her young life, and her story had all the information I needed, plus she has
written a book called "Holiday from Death". She explains and outlines her path
from near death to a very strong existence today. I found out she was located a few miles
from our home there, so I went to see her. She now has established a business promoting
her health diet, using supplements and juices, especially carrots and apples, extracted
from a juice machine that she helped design. What can one lose if you are told no medicine
will help. I have put myself on a vitamin supplement program, bought the machine, and do
use it as frequently as possible. I have retired as of 2 years ago. I have not gained my
weight back, but I feel very good, except when I get a cold. My fingers and toenails and
still horrible, they break and split, but maybe because some of the stress of business is
gone, my hair is fuller, maybe thanks to the carrot juice. Update as of July 1998. I went back for a physical, and after a bout with pneumonia again, my doctor took an x-ray and I now have a spot on my left lung. So up to the hospital for a cat scan and breathing tests. I went to the pulmonologist and after reviewing my tests, I now know the lungs are beginning to build up some scarring. His comment didn't help as he said if it got worse, and I was between 20 and 40, I would be a candidate for a lung transplant. HOWEVER, all we can do now is monitor the progression on a six month basis. Diet does play a part in healthy tissue, so I am somewhat careful about what I eat, and what I swallow. I still eat meat but lots of vegetable, fruit, and the carrot juice. No smoking, and I still hope to ski this winter with my grandchildren. What I feel is you take one day ( or small slope) at a time, rest if you need to., cover up those red marks on the face artfully with makeup, brush your hair so it shines, and go and do what you can. My husband is retired so we travel a lot now, and I just take each day as it comes, and hope this does not progress too fast. The indication I get is that the crest syndrome does not usually develop into systemic scleroderma.
I am interested in open Chat lines for now to see how other people are doing with this. Thank you for your interest, Ellie - email rjreid108@ttlc.net copyright 1998 A. Yaussy |
