It was five years ago that the life I had dreamed about for so long, but had only lived a few months, was ripped apart and destroyed forever. Danny and I had been companions in high school...until foolish teenage misunderstandings parted us. We both withstood years of one abusive relationship or another until, seven years ago, we found each other again.

The year that followed was the most glorious of my life thusfar. Then, we married and had a son together...and everything seemed perfect on the outside. Dan had begun to slow down, however, though it was barely noticeable at first. Within the next year he had developed what we came to know as Reynaud's syndrome and severe vasculitis along with the fatigue, swelling, pain and other more personal worries. At the time, we had no health insurance, and relied on the advice of a family physician who felt that a bout Dan had with Sarcoidosis in 1985-87 was once again causing his symptoms.

It was about a year and a half into the illness before we could manage to see an Internist who diagnosed Dan with Lupus. Six months later, we finally got health insurance and began seeing Dr. Barbara Ostrov at the Penn State Hershey Medical Center in Pennsylvania. It was just a year ago that she diagnosed Dan with Scleroderma. It is still not clear to us, but seems as if he has suffered from Sarcoidosis, Lupus, and Scleroderma. We are currently working with doctors at Johns Hopkins in Baltimore also because of the lung disease that has been worsening over the past 6 months or so, and they have found recent evidence of both Sarcoidosis and Scleroderma injuring his lungs.

I won't detail all of the problems, procedures, and medications that have been used over these past five years, as I'm sure they are very similar to those you all know too well.

We have two children (one from a previous marriage), 10 and 5 years. Dan has not been able to work, or do a whole lot else, in five years and we have not been able to get any help from disability. It's been a very hard road....as I'm sure everyone here understands.

I guess I've rambled on here enough. I would be happy to discuss any of the specifics with anyone interested and would particularly love to hear from any other spouses. I understand how deep the emotional pain runs in caring for your love. My husband doesn't like to talk about it much, but I know he would really like to hear from other men who have this disease. The local support chapter is a wonderful group, but mostly women. We can be reached at:
dan@ezonline.com (Dan)
or
ari@ezonline.com (Michele)
Peace and Blessings to you all,
Michele Hoover

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Copyright © 1996 Michele Hoover