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        New Message Board Archives >> 2003 Posts >> A New Start: Cluster Booklet/CD-Help Please
        
(Message started by: SommelierCH on Apr 28^th, 2003, 8:59am)

Title: A New Start: Cluster Booklet/CD-Help Please
Post by SommelierCH on Apr 28^th, 2003, 8:59am

Note: Knowing Jill’s tenacity, this project will enable her to dig into something other than grief and pain. Until I hear differently from Jill, she is still the Editor. And now, MY response to some previous posts, that were inadvertently directed towards Jill. (I am so sorry, my friend, that I was out of town, and I couldn’t watch your back, but then again…who woulda thunk it?)

It’s a 20 page booklet, for god’s sake. I’m not asking anyone for money!!! If you don’t want to participate, groovy—but, why in the world would ANYONE spend so many of life’s precious moments, trying to tear down a project designed, only to accomplish good things? Especially a project that they don’t even have to participate in! Why would you try to sink this little boat that we are trying to row? Get a fucking grip, grab an oar, or get out of the way!

I was going to put this booklet together by myself, to give to Montel Williams (who comes into the restaurant often), convincing him to do a show on us. Then Jill, video taped herself having a Cluster Attack, and I decided to include both of these in a presentation packet.

But, then I had this crazy idea that this was a project that the Whole Family, around the world could participate in. A project that required NO SKILLS AT ALL!!! Just “Copy & Paste” or “Save As”. Everybody could contribute, and feel like they were helping the cause.

If anyone thinks that “only another Clusterhead” would be interested in our story, a story about “The most excruciating pain, known to humans”, they must be living in Kazinsky’s cabin, and have never seen television. Our stories are the essence of the human existence. There is nothing, NOTHING that can be understood by every human being on the planet (including new-borns) like pain. Avoiding pain is the essential guiding force, for all humans. Clusterheads have “The Perfect Pain”. This has to be intriguing, if presented right.

This is not an OUCH sponsored project, no OUCH funds are to be used, I am using my own money. You don’t get to vote on whether we should do this project or not. (However, as always, any profits from any of my projects will be given to OUCH, 100%, sorry for any confusion). If in fact, anyone strongly objects to us trying to get the word out about Cluster Headaches, please let us know. We can keep your name off the “List of Clusterheads from around the World”, and we will promise not to use any of your posts.

I don’t want Jill to spend another second of her pain free time, trying to defend why she believes in this project. If any other person has the guts to video tape themselves in a full Cluster Attack for the world to see, then we can talk. If anyone feels the need to gripe or complain about us trying to row the boat, then please use the other/original post, for that, not on this post, please. And feel free to address me directly, there is no need to go through Jill.

We ARE in a semi-rush, for the 20 page booklet/CD (so I can make a pitch to the Networks, in addition to Montel), but not for our ultimate goal of the: “Dances with the Beast—Living with Suicide Headaches” book, the story behind our Oscar winning documentary film of the same title. The booklet/CD will have many uses after that, but please, people DON’T GET BOGGED DOWN BY FUTURE DETAILS, AT THE INCEPTION! Don’t worry about whether it’s available at Pharmacies. Give me a break.

Let’s try to keep this simple. It was designed to be simple. If everyone remembers just one good reply or one good thread, finds it and sends it to Jill—The Things Done. No one needs to spend hours pouring through the archives (unless of course, that’s what we love to do). Find a post, choose a category and send it in.

Cerebus,

Thanks for grabbing an oar. Great idea about art. I am a great supporter of Cluster Art, in any form. You’ve seen the outline for the booklet, let me know what your ideas are. In the future we could also do an OUCH auction for any artwork that you would like to donate.

Finally: This booklet supports Jill’s Cluster video, which is the foundation of a National media blitz, that will leave the insurance companies quaking in it’s wake.

I pay homage to every Clusterhead that has gone before me, with the same goals. All I can say is that we can’t give up, we have to keep chipping away. I promise you that I will make a change. I only ask that you don’t squat in the way.

David J.

Title: Re: A New Start: Cluster Booklet/CD-Help (I'm Piss
Post by firebrix on Apr 28^th, 2003, 3:17pm

Thanx SommelierCH!
I'm still with you guys on this one. But still searching too.
Will send what I have by next weekend if that's OK with you? Give us a deadline if there is one please.
Its a great idea SommelierCH.
I think a few people missed the threads leading up to Jill's post though and thought we were writing a book! (We can do that Next week)
Have a great day
firebrix

Title: Re: A New Start: Cluster Booklet/CD-Help (I'm Piss
Post by Turts on Apr 29^th, 2003, 6:22am

G'Day SommelierCH!
Keen as Mustard to help out on this. Consider me a runner and you the director. Where would you like me to start? As a Newbie dont mind looking through the archives, and learning about the beast on the way.

Title: Re: A New Start: Cluster Booklet/CD-Help (I'm Piss
Post by Mark C on Apr 29^th, 2003, 7:33am

Hang On Dave,
I am coming up with an average of 5 pages per subject. I am having a ball doing it too! I will start sending you stuff in the next day or two, I just need to clean it up a little.
PFDAN's
Mark

;D

http://www.drfeller.com/Mark/zzz.gif

Title: Re: A New Start: Cluster Booklet/CD-Help (I'm Piss
Post by pimmony on Apr 29^th, 2003, 4:09pm

I have missed so much, and been away when I should have been here to support and contribute. So sorry, now I am back from depression and starting to do things again.

Do you want to include my artwork? I have not sent you some of it but wait to hear.

Title: Re: A New Start: Cluster Booklet/CD-Help (I'm Piss
Post by SommelierCH on Apr 29^th, 2003, 7:25pm

Ahhhhhh. The smell of pure, fresh, sparkling clean spring air, from the top of a pristine mountain top. You people inspire me once again.

Turts: Here are the categories for the booklet. If you find a good reply or thread, match it to a category, and send it in to Jill.

Definition of our pain.
How we support and love each other.
The strength of the Supporters (you are angels for all of us).
Short bio’s of personal hell.
Hassles with Doctors.
Hassles with Insurance.
Hassles with Employers.
How we deal with our families, how our families deal with us.
Remedies we’ve tried, to relieve the pain.
Scripts given for meds that do nothing for CH.
Meds that fuck up your life.
Financial burden of CH.
Heartbreaking posts, that still make us cry.
Heartwarming posts, that still make us cry.
The fact that people have found better relief from their pain, from a lay group of anonymous strangers, than they have from the trusted Medical Community, posts.
Any life-threatening misdiagnosis’.
Suicide.
How the vision of one man (DJ), changed our world, with hope.

Firebrix: Thanks for keeping the faith.
Mark C: Brother, you are a one man army. You, again, as always, have my respect.
Pimmony: Dear friend, welcome back from the pits of hell. We missed you. We would be honored to include your artwork. In so many ways, your Cluster Art, has been my motivation.

You people have restored my Cluster Faith, and recharged my batteries. WATCH OUT INSURANCE COMPANIES, WE ARE COMING AFTER YOU!!!

David J.

Title: Re: A New Start: Cluster Booklet/CD-Help (I'm Piss
Post by Jill on Apr 29^th, 2003, 7:34pm

Hey guys...

Thanks David - appreciate the support and all.

Just to let everyone know that I will still be working on this project as soon as things are under control here and I am able to. I am not giving up on it, just have to put it aside for a week or so.

Thanks everyone for the help.

Jill

Title: Re: A New Start: Cluster Booklet/CD-Help Please
Post by SommelierCH on Apr 30^th, 2003, 6:27am

I don’t want anyone to get too, excited about this, but I talked to some execs from Fox Network tonight, about Cluster Headaches. They were amazed that something like this could exist, without them even knowing about it. When I mentioned my ideas for a documentary, they went off on a tangent, talking about doing the Cluster Story as a, kind of, Original Movie of the Week. In the whole scheme of things, in tinsel town, this meant nothing, believe me, absolutely nothing, ideas get bounced around a million times a day. But the look of excitement in their eyes (can you say, “ratings” or in reality--“PROFITS”) proved to me that we are on the right track. It’s the classic “David and Goliath Story”. Think: Erin Brokovitch (with a red hot, iron fireplace poker sticking out of her right eye) going after the Insurance Companies. I mentioned the fact that we were going to approach the other networks also. I didn’t have the Cluster Booklet to present, but, hey, I will take any opportunity that opens up, to lay the foundation. The foundation to get the word out.

Our project is truly unique, in L.A., because we aren’t asking for anything, we are giving it away (within reason). We aren’t asking for monetary contributions, we aren’t trying to sell a script or story idea for big bucks (within reason), we only want to get the word out. That is why people will listen to us, in this media town. We are SO different.

The Coal Miners who were trapped, wrote a book subtitled: “In our own words”, got on Oprah and had a, made for TV movie, that was advertised all the time. Talk about getting the word out.

The mere fact that a movie about our fights with the insurance co.’s, MIGHT be in the pre-planning stages, might force the insurance co.’s to recognize us (I’m STILL listed as a meegrainer and only allowed 6 Zomig ZMT 5mg. per month. At $92.00 for three pills, you wonder why I went bankrupt). Perhaps OUCH should have a negotiation team, prepped and ready……Cause THE $HITTS GONNA HIT THE FAN!!!

My goal is not to find a cure, per se. My goal is to get Cluster Headaches declared a disease, with all the financial trappings that go with it. THAT, and only THAT, is what will lead to a cure. Follow the money!

David J.

P.S. To Jill: Have strength and faith, knowing that you are starting a revolution, for your sisters and brothers. Thank you.