Health Hero: Kelly Pleas

Kelly faced the difficult diagnosis of diffuse systemic scleroderma-while going through a divorce and raising two young boys. There were decisions she had to make, and one critical step guided her in the right direction.


Sclero-what?

For six years, I lived with a "probable lupus" diagnosis. I never got used to hearing that word "lupus." So I wasn't too surprised when the good news came that I actually didn't have that condition. But there was some bad news too: I had something else: diffuse systemic scleroderma. Slcero-what, I thought? It sounds yucky and contagious! To me, it sounded ten times worse than lupus.

I was diagnosed on January 2, 2006.  It took me over a year to accept the fact that I had scleroderma.   I couldn't even say the word out loud. "I have scleroderma" sounded so definite and final. So I tried saying it in reverse order. "Scleroderma has me;" That didn't quite work. The best I could do was, "I have been diagnosed with scleroderma," as if there was a chance that the doctors and lab technicians were wrong.

But there was no mistake. The "probable lupus" I thought I had was just scleroderma in progress. So what now? I educated myself, right? Wrong! Everything I read scared me to pieces. I felt like I was given a death sentence of three, five, or maybe 10 years-but there was no way of really knowing when my life would end.

Here I was, a stay-at-home mom of two precious boys, in the process of divorce, and applying to graduate school to earn my masters in Early Childhood Education. I was optimistic about my future for the first time in 10 years. I was ready to begin a new and happy life filled with promise. But then my mind started racing. I was concerned about my boys. "Who would take care of them, I thought? What would their little lives be like without their mommy? What kind of people would they turn out to be without proper moral guidance? I felt like I had to scramble to get my affairs in order. I had no life insurance. How would I get any now?  So I threw out my completed graduate school applications. How could I possibly think about that now?

Then, thankfully, I found the International Scleroderma Network (ISN) forums and was able to communicate with others who were living with various stages, degrees, and types of scleroderma. I slowly began to see that, even as serious as my disease is, it is not a death sentence. People were living happy, productive lives in spite of this ugly disease. I learned that there have been great advances in treatments in just the past few years.

I have made many friends on the ISN forums. I wish I had found them sooner I could have saved myself a lot of anxiety and grief. With the support of all the wonderful people I've met on ISN, I realized that I was going to have a new, happy life-it just wasn't going to be the one I had planned.

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