Jump to content

Ok, so I'm crazy


danelle
 Share

Recommended Posts

Hi, just wanted to let you all know that I feel that we POTS folks are so desperate to get info out to the public, and medical profession that I did something crazy! :) I went to the Oprah show site and sent her a email about POTS and pleaded our case to have a show about it. I told you it was crazy but guess it doesn't hurt.

I also got to thinking that if everyone on her did the same thing, maybe it would have a bigger impact. I realize that the show gets thousands and thousands of requests every day but if they ever take the time to read one of the requests about POTS and investigate just a little bit, don't see how that could pass this topic up. It's worth a try!!!! So come on everybody, get on the bandwagon and email good ole' Oprah, who knows, it may just work!!! :angry:;)

Just call looney and desperate,

Danelle

Link to comment
Share on other sites

Hi, Danelle!

Great idea! Actually, the folks from MVPSupport.com tried this a few months ago and got nowhere. (Yes, I sent one.) I don't know how many may be aware of this, but MVPS and POTS have been considered by some experts to be the same thing. They indicate that it may just depend on your most prevalent symptoms, the type of doctor you go to and the knowledge base of the doctor who diagnoses it.

Please understand - I'm NOT telling anybody not to do it or that it won't work. In fact, I am thrilled you brought it up and I truly hope people WILL send the letter, and that it will make a difference. I just want people to be prepared to accept that it may not do anything. But don't let that stop us from trying!

I wish somebody had an "in" with someone involved with the show. I think that would help.

Anyway, great idea - you go, girl!

Link to comment
Share on other sites

Guest Julia59

I have written so many different people----and I have never heard a thing other then a response from my local congress woman----saying she would attend the next conference on Dysautonomia.

Oprah was one of the people I wrote in the beginning of my long education of dysautonomia. Obviously she never responded.....................

I still continue to try----and i'm gald you are trying as well.

Bravo to you....

Julie :0)

Link to comment
Share on other sites

That's a great idea- and even though it's been done before, I really think that if we continue to pester them, maybe someone someday will notice.

Link to comment
Share on other sites

Over a year ago I started with this. I have now written Oprah about 4 times. I also sent letters to Primetime, 20/20, Newsweek, Time, Dr. Phil, my local news stations, etc. I've never really gotten anywhere but there is something to be said about group effort (if we all did it maybe they would pay attention.)

Women's magazines would probably listen a little better.

Link to comment
Share on other sites

WOW, it sounds like everyone is on the ball with trying to educate the public, we just aren't getting anywhere. We need to come up with a plan. Hmmmmmmmmmmmm. Surely amongst all of us we can gather something together and send it everywhere, over and over again until someone finally listens.

WIsH we were ALL living in the same neighborhood and could have meetings/support groups all the time. But wouldn't that be a sight :) They would probably quarantine our little (or big) neighborhood :angry:

Doesn't hurt to dream a little I don't guess.

I wonder if we could have our own "convention" so we could get together and put all our foggy little brains to work. If we could find a central meeting site and maybe make it a week long or something. Everyone could come prepared with all their info and we could compile it into something spectacular!!

----------Just dreaming again, BUT dreams do come true!! ;)

Danelle

Link to comment
Share on other sites

Guest Julia59

WE could take Michael Moore with us to the White House------------Wouldn't that be a hoot. He seems he gets his point accross.

It angers me to no end that the media does not even consider this subject as worthy. I guess we have to pass out on the White House lawn.

A video may not work-----because "WE LOOK SO GOOD"-----LOL

Maybe write Michael Moore---since he seems to go places others don't want to.

Julie :0)

Link to comment
Share on other sites

I honestly have no idea how these people that get on Oprah's show do it. They must have knowledge of something that we don't in order to get a hold of her. My neice had cancer for the first 5 yrs. of her life and we were told that she wasn't going to make it. In desperation, I wrote a letter to Oprah b/c my sister and her family needed a vacation in the worst way, but didn't have the means to pay for it. Unfortunately, she never responded.

But ya know what? If they get all these letters from everyone with the same concern, maybe out of conscience she would reply.

So I say give it a shot!

I think the week long "retreat" type of thing for all of us sounds like an awesome idea!!! We could plan it enough in advance that we could all save up money for it and for those of us who are able to work, you could request time off.

Looking forward to the tea tomorrow!

Frances

Link to comment
Share on other sites

Alright, so I went ahead and sent letters to both Oprah and Dr.Phil. Worst case scenerio, they don't reply. There's strength in numbers, and something has to give here. Perhaps if we all keep sending letters eventually they will realize that this in fact will make a good show topic. I think I might send letter's to some women's magazine's too. At least if i'm sick and stuck at home, I can do SOMETHING and feel better about the situation. :)

Link to comment
Share on other sites

  • 2 weeks later...

Thanks for the link! I went ahead and submitted my story as well...if we ALL do this, it might strike a nerve with them enough to consider it...only took me 10 minutes to write it. Please take the time folks :)

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...