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Scleroderma Awareness Month 2016

Scleroderma awareness is not all rubber bracelets and t-shirts. It’s about sharing and teaching others about the hard work being done for patients, providers and caregivers Wednesday is the start of #scleroderma awareness month. There are different types of scleroderma; limited, morphea and diffuse. I refer to diffuse as “The Fast and The Furious” type, […]

How I Don’t Look Sick

Well, at least I think I don’t look sick, or like I have scleroderma.   I read my dear friend Chris Dean’s  blog this morning and I was so excited to read she was trying out products. I told her so, and she encouraged me to post about my make-up tips.   In the past […]

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 […]

Time Flies

I can’t believe it’s been so long since I have posted.  I have been writing posts, but they have been a bit angry.  You see, I prefer not to talk about having scleroderma, or living with it.  I prefer to write about it, but then I get on stage and make fun of it. I […]

I Hate The Documentary, Project Scleroderma: Beneath The Surface

Prologue Like most of my posts, I start with a topic, then go  ‘off-road’ with a personal related story and get back on track.   I have tried to change that, but this is after all, my blog.  Enjoy the crazy! I hate the documentary called Project Scleroderma: Beneath The Surfce For the longest time, […]

What I Would Tell My 23 Year-Old Self, Newly Diagnosed with Sclerodema, Part 2

Talk to someone.  I’m not saying sign up for complicated psycho-analysis.  Just talk to someone.   You have a lot of things going on, it doesn’t matter what stage of life; something will always be happening.  People would tell me, “Oh and you’re so young to have scleroderma.”  Look, even at 43, I have a […]

I Suspect My Family Is Planning an Intervention.

I have made lack of long term planning an art form.   I think I have come to grips with what is really bothering me.  In October, I was doing well.  I had established a routine I loved.  I was exercising,  scleroderma seemed to have run it’s course and it felt as though the clouds […]