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So Rhea, Where the hell have you been?

Its been ages since I’ve hung out at The Cocktail Cafe and of course you know that I missed you all but I’ve been busy undergoing tests and more tests for my recent diagnosis. Since the pregnancy and birth of my last child in 2007, I’ve been battling a strange change (yes I know, it rhymes) that started to happen with my skin. Most of my family members noticed it but at that time, we figured that it was probably hormones and/or the pregnancy that attributed to the hyper-pigmentation.

But then I started having numbness in my hands and feet and though strange, I thought nothing of it. As time went on and all throughout nursing my baby girl for almost a year, my skin started to itch terribly and swell up. I started losing feeling in my arms and hands and so I went to my primary doctor. He ran a blood test and told me that everything was fine. Get some more exercise and take on some more vitamins since I was still nursing he say. Finally, when I wasn’t satisfied with his diagnosis, I met with an allergy specialist and my dermatologist who gave me a specialized testing of the blood (and ANA test) and performed a skin biopsy.

And the results came in that I have Scleroderma… say whaaaa?

That’s right moms and dads (the few that do read my blog). I have a rare and quite strange auto-immune disease better know as “hard skin”. For many who suffer from this disorder, it can be painful and often times misdiagnosed for so many other health issues like Lupus, diabetes, etc.

Scleroderma resisted scientific research for decades. The complex, degenerative disease can present a variety of symptoms, has two distinct forms, and 80% of cases attack women in their childbearing years.

“It robs these women of not only their own lives in many cases, but robs their families which include countless children” notes actress Dana Delany, star of Presidio Med and a SRF board member.

Thank goodness, with a lot of support from my friends both online and offline, I’ve been able to manage what is now only a skin issue. Although shocked that often times friendship can come from the most unexpected places and people. And those that you considered to be friends, you  know, the ones that only call and come around when they need you for something that benefits them, simply weren’t around… hhhhmmmm.

So first, let me take this time to say THANK YOU to the list of women who are simply AMAZING and have shown so much love and support. Thank you to:

1.) Rain Pryor - daughter to the late and great Richard Pryor, mother, friend and great support.

2.) Malika Duke of Savvy Business Mom - my “sister 4 real” in that we damn near look like twins (more new pics of me to come… promise) and you’ll soon see why. She’s funny, smart and about her business. Malika and I have got big things coming up and I can’t wait!

3.) Da Vinci of Davinci’s Blog Log - a prayer warrior, my personal blogging and personal support system, and a true friend indeed. My girl’s got style and she’s really come a long way from when we first me. I know she’d say the same about me too.

4.) Terri Brinkley (my bloggy mommy buddy to shared in her fight with a rare auto-immune disorder as well. Natural is her method and so is mine), and finally. Her fight for women suffering from an auto immune disease has lead her to starting a support group of her own. More to come from this wonderful women soon…

5.) Shirley Wright - meeting someone living with Scleroderma for over 20 years has given me so much hope and inspiration to continue my fight to live a healthy lifestyle and finding a awesome doctor and support system. U R my friend.

6,) Cherri Webb - This is one strong mommy. We met on twitter and I’ve been chatting with her ever since. Thanks for your personal phone calls, funny stories, and advice from a wise and very opinionated point of view… love it.

If you or anyone out there has an auto-immune disease or know some mommy suffering, please leave me a message here. I’d love to chat with you and share some of the things that I’ve been doing.

In 1996, the Emmy Award winner and “Desperate Housewives” actress played a patient dying of scleroderma in the ABC TV movie, “For Hope.”

The film was based on the true story of actor/comedian Bob Saget’s sister, Gay, who died of the chronic, degenerative disease.You can buy the movie ‘For Hope’ from the Scleroderma Foundation. scleroderma.org

June is National Scleroderma Awareness Month, to get involved visit the foundation’s website.

How do you manage your disease? What about a support system? What are some of your dietary tips, tricks and remedies that you’d like to share with me?

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