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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 barefut

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Posted 25 June 2008 - 11:18 PM

Hi All,

Glad some of you liked my little made up name for us. I don't like to be called a scleroderma 'patient' or 'sufferer'. So Sclerodermian was the natural chioce.

Karen and Razz gave me an idea when they mentioned that we should have our own town or country. And so "Sclerodermia" was born! :lol:

So just for fun, help me build Sclerodermia - A Sclerodermian's Paradise.

What would it look like? What would a typical day be like? I know one thing for sure, it would be warm and sunny all the time! :D

#2 truman

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Posted 26 June 2008 - 12:13 AM

Houses are all ranch one floor styles. Typical day would be nice and balmy. Day begins with sweeping off all the outside ramps because all those stairs are gone. All appliances would be push button so housekeeping would be a breeze. Get the laundry out of the because the wash/dry is on the same floor.

Outside landscaping would be impeccable because those that can do and those that can't hire. Neighbors would be the best because no one is different. I picture lots of pot luck dinners, card games, block parties and tons of get togethers just to celebrate.

All stores would have drive up windows for pick up and drop off. All physicians would have offices on Main Street and be totally knowledgeable in all phases of this disease.

Certainly wouldn't be a "down"town.....
Tru

It is what it is...........

#3 jefa

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Posted 26 June 2008 - 12:38 AM

There would be a door-to-door spoon service to top you up as required.
Warm wishes,
Jefa

Carrie Maddoux
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#4 Purr

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Posted 26 June 2008 - 03:02 AM

Boy, Tru

I think you said it all. I can't think of anything else. Actually, it's kind of what I have right now. Last December I sold my 2 story plus full basement. Lot's of stairs and laundry room in the basement. The bathroom and bedrooms were on the second floor. Now I live in a small condo (1098 sq ft). Everything is on ONE floor. It's wonderful.

Great idea, barefut.

Maybe I'll have a little sign made to hang over my door: Sclerodermia Paradise.
What do you thing?!!! :)

Comfort and cheer.

Christy
Love makes the world go around!

#5 Karenlee

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Posted 26 June 2008 - 03:55 AM

Well since it's our land and we can have whatever we want, I say each home comes equipped with it's own personal chef and massage therapist. :D

#6 barefut

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Posted 26 June 2008 - 09:58 PM

I must give credit to Razz for "Sclerodermia"

I love the spoon delivery and the drive up everything Jefa and Tru :D

And of course Karen's chef and massage therapist. Don't forget housekeepers, gardeners, and nannys.

While we're at it, every home would have a jacuzzi spa and swimming pool as well as remote control everything. I am making Sclerodermians sound lazy! Only we know better huh? B)

#7 Karenlee

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Posted 27 June 2008 - 01:28 AM

Nah, we do know better. It's not lazyness, it's just that we are very deserving of these perks after all we go thru :D

Oh, and in Sclerodermia there are movie theatres with no air conditioning :P

#8 razz

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Posted 29 June 2008 - 01:57 PM

Oh my, I wandered in here and found this thread. I love all the ideas! I can add a few. The ATM machines are easy to use, no trying to slide the card in. All the food packages are easy to open, especially jars.

Now for the fantasy Sclerodermia. The sun is never too hot and it never rains. Our day starts with a knock on the door. Oh it's my chef, housekeeper, beautician and masseseur. My chef cooks me a healthy breakfast while I get my morning massage. There's another knock on the door! It's my neighbors, who offer to mow the lawn, wash my car and clean out my garage. Everyone has manners, is considerate and so helpful!

I think you hit on something here barefut! What about stickers that say "I'm a Sclerodermian and proud of it!"



Razz
:lol:
Live well, Laugh often, Love much

#9 bowbec

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Posted 03 July 2008 - 08:48 AM

Make that swimming Pool heated! All showers must have push button soap and shampoo dispensers and heated towels!
Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#10 janey

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Posted 03 July 2008 - 08:54 AM

Outlaw refrigerated air conditioning! All cooling would be with swamp coolers in the drier places and huge fans in humid places.

I love them all!

Big Hugs,
Janey Willis
ISN Support Specialist
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International Scleroderma Network (ISN)

#11 barefut

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Posted 11 July 2008 - 06:12 PM

If we can have all these wonderful things in Sclerodermia, we might as well ask for a cure as well! :D

#12 RobinAustin

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Posted 12 July 2008 - 01:36 AM

I'd like to throw in a little Margaritaville at the edge of town ... Tiki huts, good looking bartenders with white sand beaches all around. At the end of the night there is a courtesy golf cart to return you to your home :o ) Oh and in Sclerodermia the sun is filtered so you don't have to worry about UVA/B rays and all that stuff... you just enoy the way the sun feels on your warm skin.
XO

#13 barefut

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Posted 12 July 2008 - 05:56 AM

Free Patient Advocates for all!

#14 Vee

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Posted 15 July 2008 - 09:00 AM

All cups and glasses have handles or stems to hold.
And all bra's have front closures!! Sorry about that one, but it's one of my biggest trials in the morning!

And all dentists hands would be small enough to fit in your mouth without hurting!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#15 barefut

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Posted 29 July 2008 - 07:41 PM

Yea, Vee - about that bra thing...

Since we have to live here in reality :P - I have adapted by putting mine on upside down and backwards, then spinning it around and flipping it up into place - a few minor adjustments and Taa-Daa! :lol:

Just thought I'd mention my technique since front closures are hard to find and since there's no way I can reach behind my back either.

Hang in there baby! (no pun intended - oops! :o ) ;)

#16 Karenlee

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Posted 30 July 2008 - 10:17 AM

Barefut,

I do the same thing. Also for taking it off, it's like a Houdini trick. Each strap being pulled out of my shirt arm holes then whoosh! Hubby finds it amusing. :P

#17 truman

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Posted 30 July 2008 - 11:15 AM

That's funny Karen; 5:00 PM same way through the arm holes so I still have the shirt on for unexpected guests. :lol:
Tru

It is what it is...........

#18 Karenlee

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Posted 31 July 2008 - 08:10 AM

Haha we are no Criss Angel, but we do have our hidden talents don't we? :D

#19 luvbnmom3

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Posted 03 August 2008 - 02:14 AM

Haha... the bra thing cracked me up. I can't do front closures because if I bend over... it'll come undone & the sisters go flyin' away like a sling shot & come back like a boomerang.

I read through & I can't think of much else we need in Sclerodermia... 'cept maybe a personal airport so that we can go see family & stuff... the airplane can only be airconditioned in the pilots area of course. I see we've got khowledgable doctors on all phases of Ssc, can we maybe get some educators in there for spouses as well?

Obviously it'd have to be in the southern states due to snow... preferably one that isn't humid yes?

I was thinking too, in this fantasy... there could be a spa type place we can go to where they have a special room where the air pressure or something is different... can't find the words I'm looking for.... so that while you're in there, you get like a 30 minute break from your tight skin...

I know.... that's a stretch but it sounds good at the moment...haha

#20 barefut

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Posted 04 August 2008 - 06:07 PM

luvb~

I know what you mean - good one!