Health Organization for Pudendal Education

All the other conditions seem to have a day, fundraisers or awareness things surrounding them. Alzheimer, Cancer, Heart disease and so on. We should have a day too. I would love to say we are all able and willing to get together and have a conference at some spa type place, but let's be serious. Many of us are out of money, work and are slowly going out of our minds. We will have a mental get together that involves laying flat and being very still. That is what we do best right? We should be sponsored by blanket or pillow companies.

What day should we declare L.A.P.S. day?
Should we decorate our bed, couch or whatever we are laying on day in and day out?
Post pictures of the best decorated resting area?
Create pictures with the many multi-colored pills we are all taking?
What ideas do you have?

My body is broken, but my spirit and heart are strong.
I'm trying to be positive. This is my life and I want to find some joy and silliness in it.

Let me know what you think.

Kathy

Kat

What a great idea.....as most disabled centres Worldwide only allow for disabled people who can sit in wheelchairs etc.
I had this problem a while ago whilst being in a theatre which was built only three years ago...I asked and booked a seat in a designated disabled area even though i only used the seat for my coat and handbag...I stood up leaning against the wall.....but this was not for long as the manager of the theatre asked me to sit down as apparently I was breaking the fire regulations by standing up....!!!! This really infuriated me as the disabled are labelled as only being able to sit yet we who have to stand up are not recognised. When I complained to the authorities who regulated this building they admitted that they had never encountered such a situation....citing that normally disabled people can sit!!!

Another example of this also happened to me recently as i entered a supermarket and was accosted by a member of the pubic who asked why when I could walk did i park in a disabled bay....I hesitantly produced my Blue Badge which is recognised for disability.....this met with a shrug of the shoulders.

We should try to establish an awareness Worldwide that being disabled does not always mean being able to sit and that some people cannot sit.

Kat, what a brilliant idea!

I have had the same issue with standing. People seem irritated with me when they see me struggle to walk and they show up with a wheelchair. I have to explain that I'm unable to sit so often I wish there was a phrase for people like us to get the general population to understand.
The movie thing is upsetting and I'm always lying on benches in public also.
I wish there was a symbol for our condition so 'normal' people knew why we always look lazy.

What should the symbol be?
Should our day be Stand and be Still Day?
Didn't cancer already get the Stand Up to Cancer? Does that mean ours can't be titled Stand Up or something related to that?
I am starting origami tomorrow to give my hands something to do.
What are you all doing with your hands while on bed rest?

The life raft on this page is funny because it sorta looks like a pillow to sit on.

Kathy

We DO need a day. We DO need awareness. I am sick of trying to explain to the world... and I honestly think airlines SHOULD give us free extra seats or lay flat accomodations, because they accomodate people in wheelchairs.

Although we can't all travel, I wonder if we could do a group SKYPE conference every now and then to build morale.

I like where your heads at. I want to have a symbol for all of us.
A turtle because we are so slow?
You know those carts that people stand on and move around like cops in malls use? We should have a disabled sticker that is blue and white with a stick person using one of those. Like the current disabled on is blue and white with a person using a wheelchair.
SKYPE is genius. I confess that I have a computer with that and have no idea how it works. I will learn for the sake of all our sanity.
I will work on a logo and post when I figure out how to post pictures.
I am computer challenged so keep the ideas coming and I will work on it.

Hugs to everyone

Kathy

www.cafepress.com/PNESupport has merchandise for PNE support.
Buy something and we can show it of when we use skype for our awareness day.

Kathy