I Wanna Go Where They Can Pronounce My Disease
The start of July marks the end of Scleroderma Awareness Month. I know I promised my loyal readers a final installment of Scleroderma: The Mini-Series. I planned to explain how scleroderma masked the signs of preeclampsia during my second pregnancy and resulted in a massive infection that nearly cost me my life. I’ve decided not to write this final installment. Just because Scleroderma Awareness month has ended, does not mean I want to stop writing about it. My struggles with this disease do not end in June. The whole point of my blog is to elevate awareness for scleroderma and illustrate how it impacts every aspect of my life. From handicap sagas to body image issues, scleroderma is always with me. With this in mind, I’ve shifted the focus of this blog in the hopes that I won’t have to write my final installment for a good 40 years.
I’ve written about what it’s like to walk through life looking different. I’ve mentioned how the tight spotted skin that wraps my contracted arms and bony fingers draws stares from strangers. This has been a relentless part of my life for 30 years and I’ve accepted it as the norm. There is one place I go just once a year where nobody stares. For three hours, I don’t feel the lingering glances or sense the internal dialogue generated by people wondering what’s wrong with me.
At the Scleroderma Foundation’s “Stepping Out to Cure Scleroderma Walk” I truly feel comfortable in my thick skin. It’s a time for family and friends to gather and remind the world that we will rage against scleroderma until we find a cure. My own support network of friends and family attend year after year and remind me how lucky I am.
I watch patients in wheel chairs with oxygen tanks. I see families wearing shirts with pictures of their loved ones who’ve lost their battles with this devastating disease. I talk to fellow patients who’ve gone through stem cell transplants, chemotherapy and more to combat the ravaging impact of scleroderma. I reflect on my current “stable” condition and feel nothing but immense gratitude for this precious gift.
I am one of the lucky ones. Living with scleroderma for over three decades has caused me pain, disfigurement, ebbed away at my self-esteem, impacted my relationships and brought me to the brink of death. However, I am living with scleroderma, which beats the hell out of dying from scleroderma. I am fortunate to be a voice for patients who are too sick to fight for a cure. It is for them that I write this blog.
- I really wanted to incorporate the theme song from one of my favorite television shows, Cheers into my title. You may recall in earlier installments of Scleroderma: The Mini-Series, I promised a theme song. I kept trying to rewrite the lyrics to- You want to go where everybody knows your name. In my head, I thought it would be hilarious. If you’ve never watched the show, or don’t remember the theme song, skip this last part. If you’re an 80s sit. com fan like me, tell me what you think of this little ditty.
Making your way with scleroderma today takes everything you’ve got,
Getting away from Raynauds Syndrome sure would help a lot.
Wouldn’t you like scleroderma to go away?
Sometimes you wanna go where everybody doesn’t stare
Bum bum bum bum
And you know that others care….
Bum bum bum bum
You wanna go where people know
How to pronounce your disease
You wanna go where your hands and feet don’t freeze.
- I fully admit the above theme song is weak at best. Cut me some slack. Nothing in the English language rhymes with scleroderma!