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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 […]

Why I’m Not Angry Cancer Gets More Attention Than Scleroderma

    Of course I wish scleroderma got the awareness and funds cancer “enjoys”. I’m not angry and I’m going to tell you why.  I am also going to offer suggestions to help you educate health care providers and the general public by recognition and comparison. Why is cancer so infuriating to patients with rare […]

June is Scleroderma Awareness Month

  a·ware·ness əˈwernəs/ noun knowledge or perception of a situation or fact. “we need to raise public awareness of the issue” Synonyms: consciousness, recognition, realization concern about and well-informed interest in a particular situation or development. “a growing environmental awareness” – GOOGLE There were 27 diseases that had an awareness month in May. There are 13 in June […]

The Best Description of Living with A Chronic Illness You Will Ever Read. Ever.

Okay, maybe not ever.  But how about the best description of living with a chronic illness that you will read for the next fifteen minutes?   Are you healthy?  Have you ever wondered what it is like living with a chronic illness like scleroderma?  Watch the movie Ground Hog Day. It’s no secret I believe Harold Ramis […]

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 Month is Over…

    As a scleroderma patient, I feel this would be my time to list my wishes.  Of course World Scleroderma Awareness Day isn’t Christmas.  But the last hour in the month of Scleroderma Awareness Month is a great time to make requests.   You know how we tell our kids to make a list […]

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 […]