My name is Kim and I live in a small city in Southwestern Pennsylvania,
about 50 miles southeast of Pittsburgh. I'm a forty-two year old wife,
mother of two sons (Dana, age twenty-five and Craig, age fifteen) and a
granddaughter (Malea, who is nine months old). I work full time, attend
college part-time, and also work as the secretary of my church.
I was diagnosed in February 2002 with diffuse scleroderma. In addition to
the scleroderma, I suffer from Raynaud's, Sjogren's Syndrome, a hiatal
hernia, polymyositis, and in May 2002, had pancreatitis and had to have my
gall bladder removed after a severe attack.
My father, who died two weeks before my seventh birthday, had sickle cell
anemia and I was born with sickle cell trait.
It all began in October of 2000 when my mother contracted a very bad case
of pneumonia. She was hospitalized for three and one-half weeks and had
another two to three months of recuperation. I took a leave of absence
from my job and used the time to take care of her. In August of 2001, when
after many doctor visits trying to figure out why her skin had turned so
dark and dry, she went to the dermatologist who did a skin biopsy. The
results came back as scleroderma. I had only known one other person with
scleroderma and it scared me.
We made an appointment with a rheumatologist and he determined that she
did not have scleroderma but did have dermatomyositis. He immediately put
her on prednisone and scheduled appointments to see her again in three
months.
During this time, I was not really taking care of myself and my family
began to notice how the skin on the backs of my hands was very shiny and a
different texture from the rest of the skin. I went to see my
dermatologist about the texture of my skin, as well as the
hyperpigmentation and hypopigmented skin changes I was experiencing. She
took one look at my hands and asked me if I had problems with the cold.
When I told her yes, she ordered blood work and suggested I go see my
mother's rheumatologist as I probably had a related condition.
She called about two weeks later to tell me my blood work indicated
scleroderma but to have it checked by the rheumatologist. The
rheumatologist confirmed the diagnosis of diffuse scleroderma on my
initial visit to him. Since then, I have had a muscle biopsy, which
confirmed polymyositis. I had to have surgery in October 2002 for a
vaginal dysplasia problem. The healing process from that was slow not only
because of the prednisone, but also because of my immune system being
screwed up. This week I underwent an EGD (Gastroscopy) to determine why I
have a hard time swallowing. The doctor did not find any lesions or scar
tissue, but did stretch the esophagus to make swallowing easier for me.
I battle flare-ups on what is almost a monthly basis and can almost
predict the weather by the way my body feels. What keeps me going in spite
of all of this is my faith. Because "Now Faith is the substance of things
hoped for, the evidence of things not seen."
Kim - kay_cee@charter.net
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