Fibromyalgia Support Group

MydragonFly,

You are so right, the "Purple Sick Ladies" sounds so bad. I thought about it and my dughter and I came up with this one.

"The Purple Pajama Mamas"

I sent MydragonFly a PM. What does everyone else think?

"The Purple Pajama Mamas" sounds EXCELLENT I will go along with that.

And Auggie you done a great job. Everyone involved with this have been doing an excellent job of it. And if no one knows more about our disease then it would be because of them and not us! I am just proud of being connected to you all.

{{Soft & Gentle Hugs}} to all of you.

Purple Pajama Mamas..... I like it! I have written to all the talk shows and News stations. I never thought about radio. Guess I had better get moving while I still have a comouter to work with. My sister added my story about fibro on her realtor website also.

Tami

I only see one problem with the name purple pajama Mamas. What about the men. I dont really think that captures the fact that this can happen to men also.

dragonfly

Wish they had purple canes. We could be the Purple Cane Society

Men can wear purple. Atleast for one day!!!

has anyone been using the email addys I posted? I need to know if they are being used, so I know if I should post more or not. Let me know.

dragonfly

On the purple canes, What we can do is take our canes and put purple material around it with hot glue. I took my cane, an old wooden one, and put black material with fringes on it around the cane with hot glue sticks. It looks really neat and I know that it does because everytime I am out in public with the cane someone makes a comment about it. So we can all find dark purple material and wrap it around out canes so that they all match in color.

On the deal awith the Purple Pajamas Mamas we can just add the Papas to it also. The Purple Pajama Mamas & Papas How does that sound?

{{Soft & Gentle Hugs}} to all.

Rita

Way to go Anglebooze ! Great idea.

Hello! On the “individual” letter. (Gosh Thanks for you patience. Now I need your help).

OK --- IF YOU LIKE THE THREE APPROACHES. Radio/TV Letter, NFA’s guidelines or this below: Individual (but from “us”). And all of them will contain: 2 Extra pages. Quotes/Sound Bites ABOUT FMS and a FMS FACT SHEET.

Roy suggested posting in "Articles" and he was most supportive of everything everyone is doing plus what we will transmit electronically here.

Request: I know DragonFly will touch on this later BUT any letter that you send or we send will need a "contact" (see my example below) then I add this website. See the close of this "letter".

The 1st Letter Post: I showed you the TV Radio Program Director letter I will take care of getting out.

1.) Would anyone want to be a “Contact” for these letters? This does not mean you WILL be contacted but to avoid getting the message filed in trach can it has to have a “name”. I know many of you feel strongly about this.

Would Anyone want to be the “signer” fro MDJ’ers?

2.) The 2nd Letter Post: I showed the NFA guidelines (posted "Basic Letter Writing"). This is more like really writing in your own voice – good for politicians I think.

3.) The 3rd new Letter if you do not want to write one: BELOW -- ONE PAGE COPY for what we call the "Story Approach" to grab attention. Personally – I think the groups such as NFA will have press releases going out (gosh I hope so) for their Walk-a-Thon…..

4.) The opening line CAN BE ADDED or inserted as such:

“Hello, I’d like to tell you a story…”

See the ** Asterisks --you can change this as needed.

5.) AFTERWARDS -- Let me know  I need you all to PLEASE TELL ME ANY LINKS THAT EACH OF YOU LIKE FOR FIBRO-AWARENESS

SO guys and gals? IF you like this and the Radio/TV please tell me and I will POST all on Articles.

FYI – I might suggest IF you use any of the formats carefully CHOOSE one word or one phrase to underline of bold. Not too much, it is a distraction, but the point you feel you want the eye to note. And you can see the PS, is easy for the eye to fall on.

6.) IF you do NOT like the approach or have questions – let me know. You will not hurt my feelings at all. It is a “marketing” technique.

We will attach the SAMPLE touchstones or SOUND BITES and the FACT SHEET from the first letter.

========================

Dear Oprah/Editor/whoever:…

Jane was training for a marathon. She stumbled.

* (or doing laundry, going down driveway)

She awoke the next morning in excruciating pain. No Doctor could diagnose her. Couldn’t treat it.

Her husband suggested a psychiatrist. Her children were annoyed.

After seven years, she was diagnosed.

She has fibromyalgia.

There are 10 million of us. This is our story. We wake up every morning in pain. Every movement hurts. We struggle daily just to “get thru” with pain that limits our ability to eat, drive, sit, walk and sleep comfortably.

We are different from each other in age, color or status but we share one common “look”. Our faces are lined from lack of sleep, worry and stress. We grimace and wince in pain as we to take the first step every morning. Pain is our constant companion.

There is no single test. We see doctors for multiple tests that show nothing.

Like Jane, once diagnosed, there is treatment. Jane can afford the tests and treatment.

Most of us cannot. Fibromyalgia is invisible. And not recognized by Insurance companies.

Won’t you please help us? Generate awareness of our problem.

Give those undiagnosed ideas of what to ask their Doctors for. Let insurance companies know that we deserve appropriate treatment and care.

We are hoping you will help bring this illness the attention it deserves by ***(WRITING a STORY) *** (do a FEATURE) in your show/paper.

More info can be found here:

*** Website, group, etc.

P.S. --- May 12th is National Fibromyalgia Awareness Day! Oprah/Sir/etc., Can we count on you to shine your light on the NEED for a better understanding of FMS for all?

Best Regards,

Ms. Noname Contact and the “Fibro” Sufferers at MD Junction,

www.MDJunction.com ~ “People Helping People”