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I’m Not Here to Inspire You

Disability and illness are cruel, but having them does not make an individual special. This may not be a popular opinion, but it is mine. Since I have both disabilities and chronic illnesses, I will take the floor. I have been called brave, a warrior, or described as “suffering”. I have had great difficulty helping […]

Getting The Full Picture

  Ever notice things in a photograph, you didn’t see while you were posing for the picture?  Here is what I have learned about my own behavior and mental health with a “photograph perspective”. Finding the right antidepressant is no easy task.  So when we find one that does the best job with no side […]

Scleroderma Does Ugly Things to Beautiful People

Yes.  Scleroderma does do ugly things to beautiful people, and me, too. When I began this blog, my intention was to raise awareness of scleroderma.  I’m going on my sixth year with this blog, and awareness is not enough.  The truth is, scleroderma is an ugly disease.  It doesn’t directly affect breasts, and the damage […]

Vanity and Denial Are My Great Motivators

It’s not my strength in spirit, or desire to help others that has kept me alive far longer than many expected.  I  am stubborn and  I refuse to accept my limitations because I have no patience for assistive  devices that move like molasses.  Yes, I do realize how childish that sounds after typing it, but I’m […]

Paraffin and Scleroderma: Comments on an article about scleroderma.

There is an article about a woman with scleroderma in the United Kingdom all over Facebook and too many social networks to list here. I have a few comments to make. Her methods of skin care work for her and kudos to her for having the time and resources to have a full body paraffin bath […]

Bounce to a Cure for Scleroderma

Last year, James Roumeliotis, founder of Bounce to a Cure made it into the Guinness Book Of World Records for The farthest Distance Traveled on a Pogo Stick.  Watch this inspiring video with highlights from James’ Journey through Pogopalooza’s Park at The OC Fair in Costa Mesa. This year, James will attempt to break another […]

Scleroderma Is Not ‘Just A Skin Condition’

  I recently spoke with a customer service representative at the Social Security Office.  She is tasked with asking questions, and making recommendations for the person seeking help.  So, I did a little research. Today, I read an article by Agency for Healthcare Research and Quality.  They presented 5 steps to take after diagnosis.  As […]

Scleroderma Awareness Day

    As a patient, I don’t need a day to make me aware of scleroderma, but I am glad there is a day proclaimed for scleroderma awareness. Today, you will read about patients fighting for their lives and treatment.  I’m going to do something just a little different: I’m going to show you what […]

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!