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Biomarker for Diffuse Scleroderma skin has been discovered!


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Barefut's Blog: Our Precious Kids.


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#1 Joelf

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Posted 10 January 2013 - 11:09 AM

Here's an extract from Barefut's blog:


Our Precious Kids


My 15 year old son gave me an unsolicited hug this morning then a few minutes later we had this exchange:

He: Do you feel really bad when you don't take your pills?
Me: Yes..........Read More!

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#2 Amanda Thorpe

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Posted 21 January 2013 - 04:27 PM

Asking a sclerodermian (or, indeed anyone with a chronic illness) how they feel, may not seem a big deal to the person asking the question, but boy oh boy, what a difference it makes to us! Just to know that someone is interested, wants to see into our world and try to understand what life is like for us. How rare and how precious.
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#3 Shelley Ensz

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Posted 23 January 2013 - 05:18 PM

Amanda, I agree with you and Barefut.

I was shocked into speechlessness at a party one time, when a neighbor asked me if scleroderma was very painful, or in what ways did it affect my life? I don't remember her exact words at the moment, but that was the sentiment, and she asked me so sincerely that I was dumbfounded. And I was at a loss for words, too, as I didn't want to get into a serious discussion about medical woes at a light-hearted party.

But the main part of what astounded me was that I didn't even have a canned answer for it, because nobody -- not even my doctors -- had asked me that before. Or maybe it was the thoughtfulness behind it, and that she appeared to be expecting a thoughtful answer, not a trite one. I wasn't the 100th patient with complaints that day to be glossed over and ushered out the door. I wasn't the relative who is always sick. I wasn't the disappointing friend who couldn't handle a big outing that day. If I had been able or willing to regale her with my woes that day, they would have been met with a fresh mind; with a real caring. Or at least, it seemed that way.

It's also overwhelming because of the countless ways in which scleroderma can be painful, and that it is almost impossible to explain the immense changes and even startling challenges it brought into my life.

Scleroderma is a demanding, untamed beast but no matter how bad it is, sometimes you can still catch yourself being happy, in some perverse ways even glad, that it has roamed into your life, devoured all your health and normalcy, but strangely enough left other joys in its place. Joys such as the friends and comfort we find here; joys that would not have wandered into our life by any other means. Or at least, it seems that way.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#4 barefut

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Posted 24 January 2013 - 04:34 PM

"But the main part of what astounded me was that I didn't even have a canned answer for it, because nobody -- not even my doctors -- had asked me that before. Or maybe it was the thoughtfulness behind it, and that she appeared to be expecting a thoughtful answer, not a trite one. I wasn't the 100th patient with complaints that day to be glossed over and ushered out the door. I wasn't the relative who is always sick. I wasn't the disappointing friend who couldn't handle a big outing that day. If I had been able or willing to regale her with my woes that day, they would have been met with a fresh mind; with a real caring. Or at least, it seemed that way."

Shelley ~

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