After an on and off day long email chat with a most excellent fellow Stone member,
I have decided to re-name our disorder.
It is now The Stone.
Firstly, I am a little tired of saying and writing the word: Dystonia.
Plus The Stone is a much cooler word and feels like a friendly, solid word to me.
I will practice the new word for it tonight at a wonderful event in
whatever city I am in.
My co-hort calls it that at times with a buddy of hers. After hearing that,
I thought, "Hmmmm, it sounds of course, less medical and antiseptic and a
tad Rock 'n Roll. Or a lot Rock 'n Roll."
So, I will give it a whirl and will see how it goes.
Wish me luck. None of the facts will change, but I will be more
delighted to explain what it is if I can call it The Stone and then tell them
the real name towards the end of the chat.
I can be the only one embracing mixing it up a little bit. Not to worry.
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The other day, I was thinking how much I'm hating to say the word Dystonia--so much pain associated with THAT word.
ReplyDelete"The Stone" is much more laid back.
I like it!
Funny story and I can't believe I am sharing this but it goes to show how much awareness is brought about due to your appearance on Oprah and other media venues...So, i had my annual exam with my obgyn, no biggie. went in for routine blood tests and they added on an extra b/c I have been bruising so much, again, no biggie. So the lady taking my blood was like what is the name of the disease you have, and I replied Dystonia, and before i could even attempt to explain it she was like OMG i saw this girl on Oprah that had Dystonia and I knew when I saw you you had to have had the same thing!Oddly enough she seemed happy that she could catch we had the same disease which was partially funny and partially weird/ non-humorous. lol. I didn't know what to think but it was an interesting conversation explaining to her the treatments we go through and how I contacted you and feel like you were such a blessing in disguise and just sharing my journey with her. Very odd day... Hope your having a good one and have a Happy Thanksgiving! VERY Thankful for all you do!
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