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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 […]

Back To The Beginning, Again. An update about my exercise activity with scleroderma.

This a follow up to a post I wrote in 2012.  I almost started fixing typos, but realized what it really needed,  was an update.  I have sarcoidosis in addition to scleroderma, but sarcoidosis is contained with medication.  There was a great deal of damage done to my body, including my lungs that are scarred, known as […]

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 […]

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 […]

Exercise, Scleroderma and Krav Maga

  I made a video last night after Krav Maga Class.  Short story long: I injure myself more doing daily activities, than when I exercise or train with the supervision of a professional.   When my range of motion was lost, I had to relearn simple things like sitting on the floor and getting back […]

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 and Me: An Update.

Posted May, 2013.  Update since test; negative for pulmonary hypertension; James of Bounce to a Cure, broka another world record while raising funds for scleroderma research. I left the video up to share with other patients, and let them know that sometimes it’s not pulmonary hypertension. We interrupt this wonderful life for scleroderma. Watch this […]

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!       

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 […]