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        New Message Board Archives >> 2003 Posts >> My Explanation 
        
(Message started by: SommelierCH on Oct 24^th, 2003, 7:59am)

Title: My Explanation
Post by SommelierCH on Oct 24^th, 2003, 7:59am

on 10/22/03 at 11:14:09, vig wrote:

I think targeting is a great idea!
Why don't we start going toward the doctors and medical associations too?
We might get more results from changing the doctors minds rather than the general population.
hmm?

I am not trying to change anyone’s mind. I am just trying to get the word out. Once they know that we exist, every thing else WILL follow. In the mean time, WE should let our uninformed brothers and sisters know that their eye really won’t explode and that they aren’t going to die. WE know that we have ClusterHeadaches, they don’t. WE know what medications work for us, they don’t. WE have this wonderful family here on this Message Board, they don’t. “Ask not what your country can do for you; ask, what you can do for your country”. WE need to “give it up!”.

Suggestions are always welcome (well, not really, but just to keep up appearances, like my high school coach and every manager I’ve worked for since… “My door is always open”).

Seriously now, it’s tough for me to include all the info in every post, so sometimes things fall between the cracks. From my earlier posts about the weekly E-MAIL TARGET (edited for space):

Quote:

38 New Message Board Archives / Jul-Sep 2003 / Are you tired of me yet?…email MONTEL this time Sep 12th, 2003, 5:59am
Hang with me on this one kids, this is going to be a very political year. Some candidate, somewhere will be able to cash in on us and make themselves look good. We are already banded together through this website, let’s use this gift to change things.

I promised this family that, during my 22 months pain free, I would try to make a difference. I made that pledge in the honor of DJ, I will not give up. How the fuck do you make a difference???? If we knew how, we would have already done it! Personally, I have been inspired by the ClusterHeads and Supporters who have laid the foundation that we stand on right now, those who just wanted to let the world (and each other) know that we exist.

As ClusterHeads we have a very specific type of pain. If any one of us, was not, at the very least, semi kinda sorta pre-diagnosed as a ClusterHead on our very first Doctor visit, then there is a breakdown in the system. uh…duh. We must get the word out about ClusterHeadaches any way we can.

Quote:

20 New Message Board Archives / Jul-Sep 2003 / Re: OPRAH: Our email Target this week Sep 24th, 2003, 3:59am
There will be 52 Email Targets every year. In this election year, many of these Targets will be politico’s, including the President, Presidential candidates, Congressional Committee Chairpersons who govern our health care, etc. This is, as DJ said, “baby steps”.

I chose to start with some of the most familiar and recognizable names, since we are spread out around the world, hence Montel and Oprah.

You might even say that these first few Targets are “throw aways”. The heavy Targets will come later, after we have come together and become what we should be: AN INTERNATIONAL GRASS ROOTS FORCE, THAT IS “MAD AS HELL, AND WON’T TAKE IT ANY MORE!!!!!”.

Quote:

18 Message Board Topics / General Posts / This Weeks EMAIL TARGET: Why? Sep 26th, 2003, 12:17pm
All of you reading this know about ClusterHeadaches, almost all of you have at least heard of 100% Oxygen as an abortive. Let’s not keep this news to ourselves, let’s get the word out, any way we can, to the people who have no idea why their eye is going to explode. They are our brothers and sisters, we owe it to them.
All of us have been there. Don’t you wish you had seen a television show on ClusterHeadaches?

The plan is to have all the ClusterHeads and Supporters around the world focus on one Target every week, with a barrage of email. We only want them to know… that we exist. Everything else WILL follow.

There will be 52 Email Targets every year. In this election year, many of these Targets will be politico’s, including the President, Presidential candidates, Congressional Committee Chairpersons who govern our health care, etc. We are starting out with the media. This is, as DJ said, “baby steps”.

When we get our $hit together, there will be other goals. I envision our group e-mail attack being able to focus, instantly, on someone’s insurance carrier, their doctor that won’t listen or even their employer who can’t believe their pain. I say “attack”, but you all know I mean just sharing a part of our ClusterHead story. I envision us being able to provide backup e-mail support from around the world (that’s impressive!), for any one of us who is going up against a bureaucratic obstacle. From now on, no one needs to fight alone!

But right now, I’m just trying to get all of us on this Message Board moving in the same direction, just for one moment every week we coordinate on a simple goal.

153 visits to the post, produced 19 responses. I’m blaming Jerry Springer!

David J.

Title: Re: My Explanation
Post by vig on Oct 24^th, 2003, 8:28am

"I am not trying to change anyone’s mind. "

I am.

Perhaps it's just semantics, but I think we mean the same thing. I want the doctors to know more about the disease. I want the insurance companies to fully understand the impact of their policies. I want the people around me to have an idea what I've been going through. Pretty much in that order too, but that's just MY take. I think all three avenues should be explored and developed. I'd like to start building a collection of doctor-related horror stories (misdiagnoses, stupid quotes, wrong prescriptions), insurance-related nightmares (4 Imitrex a month @ $70 a pop, etc.), and stories about friends, family members, and co-workers that have inflamed CH'ers.)
I applaud all efforts to enlighten anybody that will listen.
my $.02
-p

Title: Re: My Explanation
Post by Prense on Oct 24^th, 2003, 7:01pm

on 10/24/03 at 08:28:36, vig wrote:

153 visits to the post, produced 19 responses. I’m blaming Jerry Springer!

Maybe it's cause the target really wasn't the Springinator?? ;;D

"I've had these *bleeeeeeping* headaches for 10 *bleeeeeeeping* years! My *bleeeeeeeping* boss wont give me a *bleeeeeeeping* day off to go to the *bleeeeeeeping* doctor which is across the *bleeeeeeeping* state! What the *bleeeeeeep*?!

[smiley=pokeeye.gif]

Title: Re: My Explanation
Post by jonny on Oct 24^th, 2003, 7:11pm

Your both right so shut the fuck up and keep pluging away.....nuff said.

.....................................jonny