Wednesday, June 23, 2010


Why ScleroDharma?

In Hinduism, it means one's righteous duty. And I felt that it was my duty to share my story and journey with other newly diagnosed or diagnosed persons who were feeling scared, alone or uncertain that way I did when I received my diagnosis. There were some amazing people that I met through Facebook - perfect strangers - that honestly saved me. I would read the Internet and get so scared and I would then post questions and concerns that were answered with such Kindness... and from that experience, I knew that I also wanted to help make a difference to someone else.

The other meanings for Dharma in Buddhism are: Law or truth and the teachings which lead to enlightenment. Not that I am going to be so egocentric and say anyone will reach enlightenment after reading my blog..... But perhaps loved ones or friends of a Sclero patient may be enlightened to the struggles that some Sclero patients go through or even see things in a different light coming from a stranger, rather than their loved one.
 Sometimes people don’t want to share, especially the bad, and even more so, those with a chronic illness. I think sharing about not feeling well, when it happens so often, makes you feel like a whiner, so I know at times I would rather not share - but at the same time wish that the people who cared about me understood. A dichotomy I know... but ironically Scleroderma kind of is an oxymoron. You may not look sick - but boy do you feel sick.

And lastly...the truth. Ah yes, the truth. Sometimes we don’t want to hear it, do we? Our loved ones may not want to hear that we don’t feel well or that we are afraid to die. Or are afraid the next cough will turn into bronchitis and put us in the hospital for which we may not return. Or the next cough may be the first signs of PAH or worsening fibrosis..But then to be fair, WE may not want to hear the truth either. That are loved ones are just as scared, that it is hard to deal with a person who has a chronic illness, that their lives have changed right along with ours because of this disease.

So I think Dharma was a perfect name for this blog. It is my hope that  I may help to spread the truth about this disease and all of the annoying mundane and fascinating things that go along with it, so that I may help enlighten some about how their loved ones may feel or to validate a fellow Sclero that what they feel is normal and "ok" and lastly, I feel that it is my duty to share whatever I can with others because we are "In this together"

I feel the most appropriate salutation for this post is:

Namaste ~


Peace ~ Love ~ Joy

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