Tag Archive


#NHBPM #scleroderma Acceptance adapt Adapting Autoimmune Disease Bob Saget cancer caregivers Chronically Awesome chronic illness chronic pain CREST syndrome depression disability exercise Family hands health healthcare Humor Krav Maga Lungs Meditation Mental Health online communities Parenting patients Pulmonary Fibrosis Pulmonary Hypertension RA Raynaud's Rheumatology sarcoidosis Scleroderma spoonie veteran's healthcare veterans veterans benefits Vets Viagra women women veterans wound care yoga

Scleroderma Is A Terrible Name

Scleroderma is an autoimmune disease.  Healthy cells are mistaken for unhealthy ones, and the body attacks itself.  Not only is scleroderma a difficult name to remember, it is also a Greek word that means: hard skin.  Because of the name, people mistake scleroderma for a skin condition. When a doctor told a patient that he […]

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 […]

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 […]

Scleroderma Project: Beneath The Surface, Should be Seen by Everyone.

  The title of my last post is, “I Hate The Documentary, Project Scleroderma: Beneath The Surface”.  I thought about changing the title, but I have decided to keep it, and follow up with this post.  I take you on a scenic route to my point, so feel free to jump to the paragraph that […]

Protecting The Kingdom At All Costs

  We all have fears.  Most people have a fear of things that will eat them.  Some may be afraid of heights.  I have a fear that walks a fine line between a little weird, and crazy.  One of my biggest fears is having to disrobe for a medical exam between waxing,  mistaken for Sasquatch […]

Laughter May Be Best Medicine for Scleroderma

Okay, maybe not the best, but it helps. I started writing this blog in 2009.  If you have been along for the ride, you have seen my writing evolve from sub-par to adequate.  Now, I’m doing stand-up comedy and in no way should be promoting it, but I am telling people where I will be […]

When It Comes to Scleroderma, I’m a Chicken

Or: Please allow me to reintroduce you to my booby.   …Well, it’s not really my booby.  It belongs to everyone. June 24, 2014 I have been keeping this to myself for years and what a better time to talk about my fear of scleroderma during Scleroderma Awareness Month. After my diagnosis, I wanted nothing […]

Scleroderma Awareness Month

  Year-round, researchers are gaining ground in the fight against scleroderma.  Doctors who have studied scleroderma and have extensive experience treating patients, are traveling all over the  world to teach doctors, and medical students.  Patients are gathering in support groups to learn about scleroderma, and share ways they cope.  There is much being done, and […]

Scleroderma: Part of The Adventure

I recently announced my scleroderma may be in remission.  According to Merriam Webster,  remission (is)  a period of time during a serious illness when the patient’s health improves. Remission was my word, not my doctor’s.  I have also heard from other patients who will not use remission as well.  The general consensus is, although the […]

Hope Is Afoot

Every time I think of things being “afoot”, I think of the movie, Bill and Ted’s Excellent Adventure.  I also just started watching House of Cards, and I have compulsion to editorialize what’s going on to an imaginary camera.  Both events are most likely symptoms of too much TV and way too much time alone […]