Health Organization for Pudendal Education

AM, we'll have to ask Kris about arranging a live chat. I'll send him a message.

A mommy the note on your car reveals the prejudiced beliefs some people have about chronic pain. I agree more attention needs to be brought to this condition. Websites like this one are so important.

Emily B wrote:GraceUnderFire's comment led me to look up the Invisible Disabilities Association.

Here's their webpage that talks about the subject of judging people who use disability placards.

http://www.invisibledisabilities.org/ed ... pearances/

Emily B.

Interesting find

Wow - great find, Charlie!
The hard part is getting that message out there to people not in the know. I feel very encouraged that there ARE sites out there like that, but who's accessing and reading them? Probably not your average, pain-free person who, after leaving a nasty-gram on your windshield goes home and says, "I was just a crum-bum to someone I thought was faking it".
Kinda sad, too, feeling compelled to print the article out and leaving it on your own windshield, because you feel as though you have to defend yourself.
Warm regards,
Karyn

Emily B -

THANK you for this link to the "Invisible Disabilities" website. I had no idea this existed!
http://www.invisibledisabilities.org/

Check it out my dear PNE friends. I read the page Emily sent and listened to the talk posted on the main page.
This is such an interesting issue - and one we do not see addressed very often. Yet I was thinking about how much I have had to deal with this on a daily basis, and I know many of you have had to as well.

Standing in line is one of the times when I have the most trouble. For some reason, walking at a slow pace is easier than standing in line. Less painful. Once I had a home health aide with me when I was at the bank and she walked me to the front of the line and explained to one of the floor managers that I had a disability and standing in line was very painful. I was taken care of immediately! I wish I had that young woman with me everywhere I go! But her action on my behalf has helped me "stand up" for myself where before I would have suffered.

I have a card from the ICA (Interstitial Cystitis Association) that identifies me as a person with a painful bladder disability who needs immediate access to the restroom. I have rarely used it, but in those times when I have HAD to use it, I have been so grateful for it. It looks official -- and other women have been very understanding in letting me go first in those situations.

Maybe we PNE'ers could design a professional card describing our disability and limitations for situations when we need to "show" others we need extra consideration (like moving to the front of a line, or when we cannot sit in a situation where everyone else is sitting). Just a thought ....

sunil wrote:I think we need to have a lot of nerve to put up with what we have to.

Agreed, Sunil.

I have a short leg, and although I am coming to believe my condition was peripheral to an injury, or set of injuries, I do note that when I walk it complicates my symptoms. My knowledge of it is that it facilitates a pelvic tilt when a load is placed on it. I suppose walking with a cane would help, my old physician would have helped me obtain a blue badge, and I would wear it proudly as my community has become hostile towards me, and when I say hostile, I mean: blatently defamitory, unappoligetic, and seeking to undermine whatever effort me or my wife undertake.

Celeste, you sound like a legal aid. You sound abrupt, and abrasive. You seem to have an agenda although I do not know your history. As far as this site helping people medically speaking I must say that the in the absence of medical assistence, and in light of the fact we are our advocate this site may present itself with the only access to medical help available. Most of my success has been found away from the site, without medical attention.

The note left on the car was above and beyond duty, and from my own experience I can say I have little compassion for the ignorant. I guess we all suffer some pain, ignorance has to have a really low rating.

paininmybutt wrote: Celeste, you sound like a legal aid. You sound abrupt, and abrasive. You seem to have an agenda although I do not know your history. As far as this site helping people medically speaking I must say that the in the absence of medical assistence, and in light of the fact we are our advocate this site may present itself with the only access to medical help available. Most of my success has been found away from the site, without medical attention.

Hi paininmybutt, I answered your question in the other section about leg length discrepancy, hope it helps. I feel the need to speak up for Celeste since I don't believe she comes on this board anymore. She might have a very abrupt style but her agenda is to help people. you can read her story under "success stories". I have kept in touch with her on facebook. Very nice lady. we all have different styles and personalities but we come together for a common cause, to share information as self advocates. think to criticize somebody's personal style of written communication is unwarranted.

Well said HM.
Nice to hear about Celeste. Hope she is doing well.
Helen

I always liked Celeste.

I had denial from Long Term Disability Insurance because one of the doctors (I visit a bunch of them) mentioned that I do not use supportive devices.
I cannot sit because of PN. I cannot stand for a long time because lumbar discs damage. I can stay in bed and walk. I guess there must be a line of employers to hire me.