Suggestions Please......!!!

[kat]

I am generating an informational packet on PN and PNE and was wondering if one already exists.

I have searched high and low and can't find a brochure or any (user friendly) packets to give at staff meetings so medical professionals have a reference for people like us.
Since most of the docs we see have never heard of PN or PNE they have no where to send us when we need to be diagnosed.
I would like the docs to be able to say, (I've heard of this, let me get you website that can lead you to the docs you need to cure your condition).

Any suggestions are greatly appreciated. I am out of work so money is tight but my heart is telling me I can't allow another person to live like I did for 32 years.
Let me know if you know of a packet I can order and if not, suggest what you feel the packet should look like.

I'm thinking a folder like like the one given by Dr. Conway from the Elliott Hospital.
It lists docs, treatments and is like a starter packet to pelvic pain.

Let me know your ideas please.

Loves

[KRISG]

Hi Kat ,

Catherine has already done some work on this
As a result there was a paper that she sends to doctors in Australia ,

Here is a copy .

Of course you are free to use it as much as you want to spread the word !

Kris

[Violet M]

Kat, Dr. Howard has a brochure he uses and I wonder if he would allow us to use parts of it. What do you think of this?
http://www.urmc.rochester.edu/smd/rad/pudendal.pdf

One of the purposes of this organization is to apply for government grants that could help with the cost of brochures, etc. to raise awareness of this illness. But we are still in the process of getting the organizational documents completed that are required by the government -- you would not believe the hassle that is! Thank you for your great ideas -- we will keep working on it.

Also, the mods are working on possible amendments to the letter Kris posted above -- to maybe shorten it up a bit like you suggested in another thread. We do appreciate your ideas. We are all volunteers and many of us have jobs so we are working slowly on this.

[Karyn]

Greetings, Mods!
Would it be possible to have a photo gallery on this site, for those who aren't shy? This area would be for personal photos only. Maybe a pet, a hydrangea or prize tomato plant from a members garden, member and significant other, etc ....
NO words/replies - just captions and or titles, no copy and pasted images, no diagrams of nerves, ligaments, or other body parts. This could be in the SOCIAL area, for fun! Something that would bring a smile to your face. I'm hoping Krista will repost the one of her and her fiance. She's got a beautiful, infectious smile!!!!
Thank you for your consideration!
Warm regards,
Karyn

[KC17]

Karyn,

First of all, thank you. You are so sweet! Secondly, I absolutely agree and support your suggestion. I'd love to be able to have a section where we can share photos of things that are important or special to us. I understand that for some they like to keep their identity limited just to a name, but for those who don't I think it would be great fun to get to see the people behind the names or maybe their cute cat


Best Regards,
Krista

[donstore]

Personally, I find a vigorous discussion and even passionate disagreement often illuminating as well as entertaining (although I can see I am in the minority on the entertaining part). I think of a thread and and a tv show in much the same way - if you don't like it, make another selection. I think mutual respect is important but I would hate to see principled debate censored.

[Emily B]

I typed out a long PM. Before it could be sent, I was asked to answer the question to confirm who I was. I goofed on the answer because I wasn't paying attention to the question. I typed, "Are you a human?" instead of "yes". Of course, my message didn't go through. Because of that, my composed message was lost. Ugh.

Can we set it up so that if we goof on answering the question, we get another try without losing the message we wrote?

Thanks,

Emily B.

[Mod4]

Emily

The reason we hav eintroduced the question is to eliminate spammers who were plagueing our site; if you login you should only have to answer that question once so long a syou dont spend too long logged in...the timeout is to prevent spammers revisiting the site. I hope this helps.

[Emily B]

Thanks. I totally understand why you asked the question. I noticed all of the crazy gobble-dee-goop messages that were spammed on the board lately and figured that was why the questions are being asked before postin now.

My problem happened when I goofed on the answer and then lost the entire composed email. Is there a way to give a person a second chance at answering the question without losing their composed message?

Thanks,

Emily B.

[Celeste]

To send a PM, you must have been logged in. So you're saying the connection timed out on you?

The only thing I can think of is to get in the habit of doing a copy of your PM before you press Submit, so that if you have to log back on, you can go to the PM field and just paste your text in and try again; the material will be retained on your browser. While it shouldn't be necessary, if this keeps you from losing your work it might be worth it. Just thinking out loud.