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How To Request Blood Tests Before a Doctor’s Appointment

It’s easier than you think! Patients with chronic illnesses, see specialists for routine appointments four times a year.  Many, like me, are on life extending drugs that can cause damage to kidneys, liver and cause infections, so four times a year becomes a normal routine.   I used to be upset because the blood test […]

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 […]

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!       

What’s The Point?

Will it really make a difference if we get scleroderma to trend June 3? Let’s start with more questions.  Because isn’t the journey what it’s all about?  No? Well how about this:  It’s what Yoda would do. Don’t worry, Young Jedi.  As always, there is an option to skip to the end.  What is most […]

The Power of Us. We’re going to make Scleroderma trend world-wide on Twitter.

Even crazier, we are going to do this without spending a single cent. OUR OBJECTIVE Scleroderma will trend on Twitter world-wide, June 3, 2013, not by tweeting the same thing over and over.  We will do it with tweets, retweets and modified tweets.  This is the campaign I am  proposing.  This is not my campaign. […]

Feeling Square Peg-ish…

    At 42, I still feel like a square peg. Come on, you remember the show about Carrie before Sex in the City. I’m no Carrie. Actually, I’m more an Amanda because as I have been told by one or more dates that I am too analytical. I disagree. If I was truly analytical, […]

The “Bromance” of Vanity & My Lungs

I have pulmonary fibrosis with my scleroderma.  I speak to the parts of my body like they are separate entities to remind them I know they are plotting against me and I will keep throwing a wrench in their maniacal plans to kill me.  I love my lungs for so many reasons, but they are […]

Pain, Scleroderma and Activity

This has to be a quick one today, I have an infusion. Last night, I had a great Krav Maga class.  I felt very good, but I forget sometimes, that I maintain a regular level of pain.  We’ve all been at the doctor’s office and asked to rate our pain.  My reply is usually, ” […]

Why I Choose to Leave Public Nervous Breakdowns to The Kardashians

How do I decide what to share? 3. Will anyone else but me care?  No= Pick new topic 2. Do I have valid research to back information I talk about? No= Pick new topic 1.  Should I post about an ongoing unresolved  crisis?  No= Pick new topic.   Solve crisis privately, post when there is […]