barefut

Sclerodermia

31 posts in this topic

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

Share this post


Link to post
Share on other sites

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...........

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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!!

Share this post


Link to post
Share on other sites

Razz ~ Absolutely, no payments of any kind!!!!

Much love,

Nina

Share this post


Link to post
Share on other sites

No air conditioning I am there. Can there be a beach and a mountain side? I think one of these rheumatologist doctors should be so educated that they find out what causes this horrible disease anyway and have a cure.It would be so nice not to have to trek a sweater every where I go.

 

Anderson

Share this post


Link to post
Share on other sites

I'm going for something sort of Hawaiian: Mountains at your back, the ocean (warm ocean, mind you) in front, lovely hot sand.... We'll need a pool boy to bring us the drinks we can't have now. Ummm, nice.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

Hi all...

 

I would be the woman in the plastic bubble (since I can't tolerate heat due to my heart thingy) but I am sooooo there.

 

There would also be 'people mover' sidewalks with comfy chairs that would lift you back to standing after depositing you at your destination for days when you don't want to drive and moisturizing stations. Just pop into a booth and in only a second you are completely hydrated... skin moist, eyes glistening and mouth minty fresh and ready for a good old gab-fest.

 

All beaches would have warm soft sand that never clings to your feet or hitch-hikes in your bathing suit and inscects would hit an invisable barrier at the border.

 

Tooth brushes would all be self cleaning and refilling so no one would ever have to deal with a tooth paste cap again.

 

Dogs would all be litter trained (I have a leg up here since Loki has been since he came home) to use a self cleaning litterpan and would shed only into recepticals that would collect the hair for spinning and weaving into mittens for when we had to venture into the 'bad lands'.

 

Rain would only happen between the hours of 2am and 6am on alternating days to keep the dust down and the yards green.

 

Air blower hand driers would be illegal, instead there would be warm hand towels in all public bathrooms.

 

All doors would be voice or pressure activated so no more struggling to open doors or car doors.

 

There would be no taxes of any kind since we will be totally funded by the sales of our fido-mittens to the outside world.

 

And last but not least... we would hold monthly 'Happy Dance-offs' with the prize being a huge crown and sash and a months supply of moisturizer booth tokens!

 

Oh.... and on the bra subject.... when I buy a new bra I fit it then stitch the fastener closed. It takes a bit of mushing and pushing to get them on after that, but I can't do those little hooks at all and it makes life a little easier.

 

Penny

Share this post


Link to post
Share on other sites

Sounds so good I can image it all. I read threw the posts and what great ideas!

 

I'd like to add a lush garden full of lush plants, shrubs, and lush scented flowers and a warm breeze helping the scent circulate, and of course a gardener to keep it all good for the things we couldn't manage, :blink:

a nice soft swing chair, to relax with my friends and cats and dog close by, :rolleyes: somewhere we could gather to relax chat, vent, relax again and meditate, maybe a covered in spa in the bottom off the garden because it would be so secluded and a safe place to relax and of course always the sun shining and never cold! ;)

so when do we get this place :D it sounds so gooooood! :lol:

jaxsx


live life for today and not for tomorrow

 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now