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Why I Am Not Scleroderma

  Yesterday on Facebook, I expressed my disappointment with  I.Am.Scleroderma campaign.   I do like and support the foundation who did it, because so many patients benefit from their work.  I am not happy with that campaign. You might ask, why not send a letter?  Well, I had a thought, expressed it on Facebook and […]

Getting Scleroderma to Trend on Twitter is Not Just About Scleroderma

I am honored that The Pulmonary Hypertention Association has posted what I wrote about this monday’s upcoming Twitter Event: To get #scleroderma to trend world-wide.  There are many overlapping and associated conditions. Please visit their Associated Condition Patient Blog!       

I Feel The Need to Read…

It’s been a long time since my diagnosis. So much has happened since 1994.  We have some so far with research and awareness, yet it still feels like I’m stuck in the mud in Alabama like a mash-up between the movies Ground Hog Day and My Cousin Vinnie. I have decided to sit out the […]

WEGO Health: Miss Congeniality & Hilarious Health Activist

Day 30 Chris Dean Virgo. Pocket Duck Expert. WEGO Heath Activist. I heard about Chris Dean’s blog, Life Your Way! in June of 2012.  Since that time, I  try to read her blog every day.  It is truly where “Health and Humor Meet in a Head-on Collision”.  I am supporting her nomination as Miss Congeniality […]

Hitting My Wall And Breaking Through

In June, I hit the wall*.  It’s not my first wall, and it won’t be my last, but I have broken through this one, brick by brick.   I hit my wall in June after a personal disappointment  and  became less active in social media.  Not as a blogger, but as member of the community. […]

Online Support Community, Inspire

Many people benefit from weekly support groups.  Many have to drive hours just to find one near them.  It’s hard to be a patient with one or more hard to pronounce, never been heard of diseases.  It’s very easy to feel isolated. I’m not sure when I discovered Inspire.com but I am sure it is a […]