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barefut

Sclerodermia

31 posts in this topic

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


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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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...........

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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!

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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

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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)


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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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

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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

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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.

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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

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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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

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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

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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 ) ;)


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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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

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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...........

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

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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

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In keeping with the bra topic, There'd be no pantyhose allowed!!! I almost strangle my husband with mine the last time I tried to put a pair on. He thought he'd help me since I was struggling, and somehow it ended up around his neck with my feet halfway in them! NOt a pretty sight, but it was funny. I was laughing so hard, I told him I better just take them off before I kill him or the kids see us and are scarred for life!!!

 

Oh yea, and all the flooring is soft, so we don't have to worry about wearing cushy shoes for our painful feet. And all the toilets are tall so we don't have to do gymnastics trying to stand up to get off of it!

 

Ok, I'll stop now!


Happy people don't have the best of everything, they just make the best of everything they have!

 

Warm and Happy to you! Vee

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This sounds so wonderful ~ let's add a big one while we're at it:

 

All of our relatives and friends would be totally educated on Scleroderma and understand completely when we are "tired" or "aching" or just plain "sore all over." They would always understand ,

 

I would like to move into Sclerodermia ASAP ~ oh, no mortgage payments either!!

Much love,

Nina

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You're so funny Vee! The picture that comes to my mind is too hilarious to imagine! I gave up on pantyhose long ago. You're not kidding about the toilet seats being too low. I never realized how difficult it could be until I developed scleroderma. [As a side note, when my bathroom was falling apart and we did some work to it, I made sure we found the highest toilet seat when we replaced the toilet. Yay!]

 

Nina how about cars with easy door handles that open easily and keys that turn smoothly. And, no car payments! :lol:

 

 

Hugs,

Razz


Live well, Laugh often, Love much

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Central vacuum system in all houses so we don't have to huff and puff and shove heavy vacuums around! And that magic glass and paint that I saw on a BBC documentary - they never get dirty, so no more buckets of water that are always cold...

 

Since all the physicians are just exactly what we want and need, I'll go for knowledgeable, helpful, and **willing to pay** insurance companies. Well, we'll only need one, right?

 

OOHHH!! Not just cushioned floors, but heated ones!! Oh yeah, that's the one that really does it for me.

 

No bra, no pantyhose? It's not Sclerodermia, it's Heaven!!

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