Mad As Hell
 

Or maybe not??? New Fybromyalgia (sp) commercial on television folks and it is running nonstop here. Shows folks in sooo much pain. Hmmmmmm, sounds like us ha!!! BUT That's the catch. IT'S NOT!!! BUT it should be. Fybro has been recognized for a long time. And now they get there own tv spot. What about us? Ha???? We can't even get half of the doctors to admit that RSD even exists!!! :mad: Let alone get mentioned on tv. Should I be mad or grateful that at least someone is getting attention? I'm not sure. Tell me what you think. This ought to me interesting!!!!!!!

Chin Up, hang in there, lotsa :grouphug: :grouphug: and much love

MARK :)

I Miss Youuuuuuu
 

Mark Mark Mark.....where have u been??????????? I miss you horribly. Glad you are still mad ;) shows me you still have that spunk!!! I still love you and worry about you. E-mail me please and let me know what is goin on with you! I think of you every single day sweetie. Hope to hear from you soon...debbi3674@hotmail.com

Lots of love..Deb

Hi Mark,
 

I was just saying last week, that I miss you guys not being here. You, Mike, Allen, and Vicc. OF course I know men don't talk as much as women. LOL

Someone else mentioned the ad and I have yet to see it here in Co. In a way it's good that Fibro is being looked at as a disease instead of a wastebasket diagnoses. My PA use to call it that but that man could take care of you no matter what you had. He listened to the symptoms and helped deal with them.

It does make me angry also that we are not getting anyone to talk about RSD. I emailed Oprah and she wrote me a letter that she doesn't deal with anything like that anymore. She has changed her format since moving and she only deals with happy things or movie stars.

I have emailed Montel, Tyra and no one answered me back. I didn't want to be on the shows I just wanted to see them mentioned and talked about.

If a movie star don't have it then it just seems to get swept under the rugs.

I have seen some good coming out of Co. though about pain meds. I got a stack of papers last week that told what pain meds do not have to have a prior authorization from the insurance to get it now.

We have a group here called the Colorado Coalilition for the disabled and they have fought like crazy to get things done for the disabled. I know they have offices in Kansas and I think Oklahoma now.

I just think there is not enough being done in the white house, senate and house of reps to get things done for RSD. No one to stand up for us.

Hope you have a good day and don't let your pain get up due to your being upset about the ad. I can't wait to see it to see what it's about.

Ada

Mark, I live in Mass also and i have seen that comercial non stop. I want to know how can we get something like that! There are alot of medical studies being advertised in this area for people with Fibro can get involved in. Your right, what about us? I've tried theToday show, never got back to me. My next step is the local news around here. I guess its up to us to do something about this. But how?
SUE K.

Good luck I hope in time we are treated better...

I see that commercial here in Florida many times a day as well. I thought the same thing when I saw it, hey, what about us?!?!!? It's sad that RSD can't get as much attention as everything else does, but I keep hoping and talking to people. I guess it's all we can do really.

Hugs,

Karen

Hey Mark
 

On one hand it is good because like Ada said, a trash can diagnosis is finally getting much needed exposure.

We need this kind of exposure too!

I know I have posted this before, but maybe we should let our TV stations know about this, and request it.

http://www.youtube.com/watch?v=S1Qn5rus4Gg

Maybe we could have one running all the time too.

I've seen the commercial and also would like to see one for RSD. I think the fibro commercial is sponsered by a fibro organization. Check the bottom of the ad at the end. I think a problem we have with getting an RSD ad/awareness is that there are so many different names for it and no central organization to do ads, etc.
Linmarie

Dear Mark,

If you don't mind, I think I will become a member of the mad as hell club. The Pharmacy Companies have no invested interest in getting us better. Big Hugs, Roz xxx

On the upside....Fibro has a PSA :)
I had never heard of Fibro until a few years ago when a friend got it and even then I thought it was really rare because I never heard anything about it except from her.
First time I ever heard of RSD was my own diagnosis ..... information needs to come from a grassroots campaign.
I have been in Alanon (friends and family of alcoholics) for 11 years. When we did community outreach it was a real hands on event. Bringing PSA's to TV and radio stations, talking to schools, hanging flyers...etc.
My husband is taking me to my first RSD support group meeting in August. It is an hour away. I am not in a small town so it seems ridiculous that we don't have one here. My plan is to get information so that I can start a support group in my own town.
From there I plan to do as I learned in Alanon....find the PSAs get the information out to the public....start at home. Maybe I can turn some of this frustration and pain into something positive.
Fibro used to be considered an all in your head disease....education is what turned it around. If we all started in our own communities we wouldn't need the big tv shows and one shot deals. It has to start somewhere :)
Jeanne