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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 […]

My Letter to Congress to Urge Funds for Scleroderma Research

This is just one thing I did this morning, which took about 10 minutes. Okay- probably 20, I’m a slow typist. Here was the reply I received in my email. I omitted personal information to post to this blog, like my address, etc… To get started now, click HERE Here is the response I received […]

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 […]

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!       

Chasing Dragons

Trying to keep up with each organ system effected by the progression of scleroderma is like chasing dragons.  I don’t know what to look for, so the dragons taunt me with a hint here, and a clue there. I have pulmonary fibrosis.  It can exist alone or be part of an associated condition.  Pulmonary fibrosis […]

Surprise! I have toes!

I have been attending Krav Maga consistently and something happened tonight. You know that “Soldier Crawl”?   I had modified it using my forearms and knees.  Today,  I was crawling, and quite naturally, my toes took over for my knees.  It felt natural, and surprised me.  It only happened twice, but it happened.   I […]

Scleroderma, Sarcoidosis and Skin Care?

All my travel, education and maintenance for The Mighty Turtle, is covered by me.  I seek no sponsors, because when someone writes a check, there is an obligation of loyalty for their support.  That’s something I put upon myself, but hey, I like sleeping at night. Here’s why I don’t seek sponsors:  I am free […]

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 […]