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Diagnosis: Diffuse Systemic Scleroderma

Posted by barefut , 04 November 2007 · 1,066 views

For six years I had a "probable lupus" diagnosis. I never could get used to the word lupus. I just don't like the way it sounds: Looo Pus. Lew pus. So I just never used it. Then, good news! I found out I didn't have lupus! Bad news. I had diffuse systemic scleroderma. Slcero-what? Sounds yukky and contagious. Ten times worse sounding than lupus. And the diffuse, systemic part didn't sound so great either. You know, the more words they add to your disease, the worse it is.

My diagnosis came on January 2, 2006. Funny how I remember the exact date like it was the day of some kind of disaster.

It took me over a year to own scleroderma. I couldn't even say out loud, "I have scleroderma." It sounded so definite and final. I tried it backwards, "Scleroderma has me." The best I could do was, "I have been diagnosed with scleroderma," as if maybe there was a chance that the doctors and lab techs made a mistake. After all, my lupus diagnosis was a mistake.

There was no mistake. Turns out my lupus diagnosis was just scleroderma in progress. Now how was I going to deal with this? First, educate myself, right? Wrong! Everything I read scared me to......pieces. I felt I was given a death sentence and I could have 3-5, maybe 10 years and there was no way to know.

Here I was, a stay-at-home mom to my two precious boys; in a bad marriage that I was gearing up to end; and in the process of applying to graduate school to earn my masters in Early Childhood Education. I was optimistic about my future for the first time in almost 10 years. I was ready to begin a new, happy, stress-free life full of promise. Then the rug was yanked out from under me and I landed in a broken heap.

My mind raced with, "What am I going to do?!" My first concern was for my boys. Who would take care of them? What would their little lives be like without their mommy? What kind of people would they turn out to be without proper moral guidance?

Then I felt like I had to scramble to get my affairs in order. I had no life insurance. How would I get any now?! Where were my old journals? Was there anything in them I didn't want left behind?

I threw out my completed financial aid and graduate school applications. How could I possibly think about that now?

I became hyper-sensitive, superstitious even, to silly, meaningless things. I could no longer watch my favorite hospital show on TV because people were dying. In one episode, a little boy lost his mom. I couldn't bear it.

Thankfully, I found the International Scleroderma Network Forums and was able to communicate with real people living with various stages, degrees and types of scleroderma and I slowly began to see that, even as serious as diffuse systemic scleroderma 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 that have given many people new hope.

I have made many new friends on the ISN message board. I wish that I had come here first in trying to educate myself and maybe I could have saved myself a lot of anxiety and grief. With the knowledge and support of all the wonderful people I have met on the sclero forums, I realized that I was still going to have a new, happy life full of promise (notice I left out stress-free) -- it just wasn't going to be the one I had planned.




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