"I have Scleroderma"

Hi All: I'm at a NCA-HLC conference in Chicago, "the Windy City" and I can testify that indeed, it is...I was wearing some thick, fuzzy brown bear looking gloves without a coat and a conference woman said to me, "Oh, I hope it's not that cold out!" (smiling) and I found myself saying, "I have Scleroderma." Instantly, her face changed, she looked shocked and apparently knew what it was judging by her expression. I found myself smiling at her because it's not her fault for finding it odd that I would be wearing gloves indoors...she was only being "comical" but I felt an instant need to "punish" her for her question. Really, in a few seconds, I gave her a smile and pretended I was a member of an exclusive and rare club...this is true. So to you very special people...have a good night! Sweet dreams free from pain (and Reflux!). NitaP

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How are you free from pain and reflux??

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I grew up about 40 minutes from Chicago and can attest to the wind! Loved it too! Thanks for the funny tonight. I get those stares at the beach. It can be 95 outside, ocean temp in the upper 70s and I'll be sitting on the beach wrapped in blankets to keep warm. I used to swim in Lake Michigan with the ice floating around. Now ..... HA! Put me in 95 degree water and I can still get cold! But, I can still enjoy my surroundings and people. That's all that really matters anyway!

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17Sunshine: I am not...I feel RA pain in my elbows (but not all the time) and I have terrific pain in my hands if I accidently "bump" either one of my pointing fingers which are shiny and hard. My lower back hurts (but not always); the inside of my right knee (but not always) and my feet are almost never comfortable. I dream of finding shoes that give my feet relief. I watch young women walking past me with stilletto heels and my eyes hurt! (just kidding...I don't know how they do it!) I feel blessed that I don't hurt 100% of the time because I know that some of us do. :>( And, I've had reflux every day of the conference because my diet changed while I am attending the conference...I'm on meds but even eating before 6:00 and watching fat and suger still affects me away from home. I'll be home today, so my life will get back to normal (or as normal as we can be.) NitaP

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Hello NitaP

I live here in the Windy City and know exactly how it is to wear gloves all year round. People look at me like I'm crazy or something. It could be 80+ degrees outside and with just a slight wind and I'm in gloves or a sweater sometimes both. I wish there was a way to better get our disease out to the public so people wouldn't think of us freaks. However, I guess word of mouth will have to do, Lots of people stare and whisper some ask questions. When they ask they think OMG! is it contagious and back up about 3 feet. Now that when I really get offended. I just want to walk up to them and give them a big bear hug and then laugh at them. Just sharing and venting.

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Hi NitaP , where r u from ? Ur history is very similar to me , same symptoms same feelings n suffering since 2000 . How do u cope up with all this? can any one tell me our prognosis

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PSNB: I am from Oklahoma where our weather is unpredictable. However, the return from Chicago put me squarely in the "eye" of the Dallas Fort Worth Airport minutes before the severe weather hit us and our flights were cancelled. Believe me, we felt extremely lucky that our plane landed, we were on a train shuttle to the next flight port when sirens and the announcement to "evacuate" the shuttle and move away from windows with your backs to the walls! OMG...long story short...the nearby 13 tornados created havoc for DFW but more for the nearby residential areas that lost roofs! It was good to finally be back to my (inclined) bed and pillow which helps my reflux. NitaP

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I have to wear gloves even on hot days if I go into an air conditioned room. EVERYONE has to make a comment and laugh. I don't get it. I find it makes me grouchy.

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