I Wanna Go Where They Can Pronounce My Disease

walk #7

 

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.



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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.

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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.

Disclaimers:

  • 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.

cheers

 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!

15 Comments »

  1. I love your theme song!! You make me laugh you make me cry. I look forward to reading your blog for the next 40 years!

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  2. Hi Lisa! So great seeing you last Sunday at the walk. I hope we took in a lot of $$$$$! Just read your blog which mentions DigestaCure. I have seen that before and want to know if you are taking it, and if so, does it really help?

    Hope to see you on the 11th at the meeting! Take care Love and blessings, Mary (white hair and glasses😊)

    Sent from my iPad

    >

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  3. Keep writing! Maybe sometime soon You will be writing about the joy of life and the cure that was found for scleroderma. Scleroderma will just be part of the picture and not the focus!
    Love the way you write and would read anything that you write!
    Keep on “truckin” And I know I will be reading something
    You wrote when we are both old(I am already) and grey!
    Best of everything !
    Arlene

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  4. Loved seeing your smiling face Sunday. Hope we made lots of moola so we can find a cure for this awful disease. Always love reading your blog… Crying and laughing at the same time. I don’t know how you do it. Loved your song and I I know that one day you will meet someone and tell them that you have Scleroderma and they will say, ” I’ve heard of that disease” …. Because of this blog and all you do, Scleroderma will be a household word. We just need a little more time.
    Here’s to the next 40 years🍷.
    XO
    Franny

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  5. You are lucky to work in a place where everybody knows your name and 99% don’t stare at you. Also 100% love you and respect you. You were not there the day we found out you might die. There was not a dry eye in the room.We all wanted know what we could do to help you and Dsve and the kids. But Stacy had everything well in hand. So I painted a toy box and put in as much love as possible. Others did their things including notifying G-d that we needed you to teach the children.
    There is no question that everybody knows your name…it is too important to forget!

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  6. I’ve only ever met one gentleman with the condition, so your blog has become an education for me. You definitely are needed to articulate everything for those who can’t. Keep it up!

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