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Kaycee: Diffuse Scleroderma, Polymyositis, Fibromyalgia, and Diabetes

I am a forty-six-year-old wife, mother of two sons (Dana, age twenty-nine and Craig, age nineteen), and grandmother of two granddaughters (Malea, age four years and Amara age one year) and one grandson (Christian, age two years). I worked full time until October 2004, when I retired due to disability. I graduated from college in December 2006, with a Bachelor of Science in Business Administration with a minor in Marketing, 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 recently 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, 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 hyper pigmentation and hypo pigmented 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 also 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.

I battle flare-ups on what is almost a monthly basis, but it is my faith that keeps me going in spite of it all.

~ Update March 22, 2007 ~

In November 2005, I was diagnosed with Type II insulin dependent diabetes after spending two weeks in the hospital with a severe bout of pneumonia.

In January 2007, I was also diagnosed with fibromyalgia. The scleroderma has begun to affect my lungs and my breathing capacity. My gastrointestinal involvement has worsened and I am lactose-intolerant. Because of all the different medications I am currently on, I have lost my appetite, which might be a good thing since my diet is now a very restrictive one. Unfortunately I love all of the foods I cannot have, such as ice cream, carbonated beverages, alcohol (on occasion), chocolate, and Italian foods such as spaghetti. But with no appetite, I have no desire to eat them most of the time anyway.

The good thing is a have a great team of doctors who are willing to work together to help maintain and even try to improve the quality of my life and to help me live as long a life as possible. And I intend to take full advantage of all they have to offer me.

I was hospitalized for four days over Easter with what they called right-sided facial cellulitis. The entire right side of my face swelled up overnight swelling my eye shut. I was admitted to the hospital for four days of IV antibiotics in mega doses. Then I was sent home on oral antibiotics to be taken until 4/28/09. The bad part about this is that now that this has happened, I am more susceptible to it happening again.

Just another hurdle to jump with this dreadful disease. But my faith will sustain me through it all.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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