Click this link to read a post I like on the clusterheadaches.com message board...

HappyElaine CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 603 Flovilla,GA Gender:	Re: I have a dream Reply #25 - Oct 15^th, 2008 at 9:19am I am with Gator and O.U.C.H on this one.
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BarbaraD

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Re: I have a dream
Reply #26 - Oct 15^th, 2008 at 9:22am

I said I wasn't going to do this and I've sat on my hands ... but...

We don't have volunteers.... why? Maybe the BOD should ask that question and think about it. OUCH is elgible for grants and we had a guy on here who KNEW HOW to get grants and volunteered to head the committee (team whatever) and try to get some grants, BUT it was ascertained that "he was not a team player" (direct quote from the powers that be at the time) so someone who wasn't qualified was appointed. Outcome - still NO GRANTS!

Before Nashcon2004, we had about $250,000 in a done deal offered in Pet Scans, but the person who got those "got above her authority" in getting them so we had to get rid of that troublemaker. And yes, I was at the BOD meeting that decided that one. Outcome - we LOST those Pet Scans in a big hurry.

For years I've heard, "We're working on big things." from the BOD of Directors and "We just can't say anything yet." Well it's been four years - my question is WHEN CAN you say something?

When I resigned as Treasurer in 2004 we had over $16,000 in the bank and we were posting a report monthly to let the MEMBERS know where every cent was being spent. That money is now gone and I have no idea where it went (I'm sure it was spent wisely, but I wonder where it went - I've asked for financial reports, but have not received them).

There seems to be an era of secrecy within the BOD of OUCH. The members are left out in the cold. I can't even get in touch with board members exept on ch.com by sending pms.

As far as becoming involved with other headache organizations.. this has been on the board since as far back as Atlanta 2001 and it was a good idea then and still is. The more we work with other organizations the more OUCH will get it's name out and the more people will become AWARE of Clusters. That's just common sense.

As one of the FOUNDERS of OUCH, I can say, I have seen it take what I consider a "wrong" path in several areas over the last few years. We started it with an "open" board room and I think it should go back to that. Unless members feel a part of something it will never grow into what we perceived at the beginning. Somewhere the BOD quit listening to its members. It's done a lot of good over the years, but right now I just think it's on the wrong path and I agree with Svenn, Chuck and Pete.

BD

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Melissa

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Re: I have a dream
Reply #27 - Oct 15^th, 2008 at 9:29am

Ok, Barb, this is what kills those who DO volunteer for OUCH. Up until the very last paragraph of your post, you offered no solutions, only criticism. This is what bothers me.

I SO wanted to say screw it all and just leave the dang thing forever, because instead of offering positive reinforcement, all we got was slammed. And when the body as a whole is berated, it gets taken personally. At least, I took it personally, so obviously I wasn't the person for the job I held.

I don't think I'm a good membership chair either, because I am not on the phone, pounding the streets, etc., but I took the position because no one else did. What does that tell you?

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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel

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Cathi_Pierce

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Re: I have a dream
Reply #28 - Oct 15^th, 2008 at 9:35am

OK...........let's be clear about something. The goal, as you will, is to gain more attention on CH. I have already received my admonishing pm for bringing this back up, but, the fact of the matter is MORE PEOPLE NEED TO BE COUNTED! How many people land here every week? How many people are here already?
I'm not here to bash OUCH........LOOK at me! What is it I gain........or lose??
Now, here's the punchline......I just got a wakeup call from Svenn.......he is in a lot of pain, cannot do his beloved Trex because of his heart, and he feels he is becoming addicted to morphine.......and THAT was the subject of his post.........he doesn't have the focus right now to worry about his dream....
Yeah..my lesson learned
Peace out

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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: I have a dream Reply #29 - Oct 15^th, 2008 at 9:38am Ok, I won't post any more on this thread.
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BarbaraD

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Re: I have a dream
Reply #30 - Oct 15^th, 2008 at 9:51am

Mel,

This thread was started "for" opinions from members. If OUCH doesn't know how you "feel" then how in the world can it change (or stay the same?).

Bashing is NOT what I had in mind - just what (in my opinion) I think is wrong. And if you'll remember I've always been very vocal in my opinions about OUCH (you were in Nashville). I've been wrong several time, but a few times I've been right (come on give me that one).

What I'm saying right now is that most of us are back to ch.com where we started back in 99 before OUCH came into being.

Hugs BD

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Melissa

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Re: I have a dream
Reply #31 - Oct 15^th, 2008 at 10:00am

I know I said I wouldn't post to this thread anymore, but I have to respond...

BarbaraD wrote on Oct 15^th, 2008 at 9:51am:

I've been wrong several time, but a few times I've been right (come on give me that one).

Alright, I'll give you that one, but that's IT! Wink

I wish I was a good community organizer, cause then I could get OUCH going on the right track, you betcha!

But I can only offer suggestions, I don't know what else to do. Undecided

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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel

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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: I have a dream Reply #32 - Oct 15^th, 2008 at 10:03am At one time, I was approached by one of the board members about a volunteer position. I was all for it and said I'd do it. Well, I was turned down. So, guess what folks? It won't happen again. Carolyn
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Cathi_Pierce CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1191 x0\|Oregon City\|USA\|\|0\|0\|OR,Oregon Gender:	Re: I have a dream Reply #33 - Oct 15^th, 2008 at 10:05am This thread needs to be locked...or better yet, vaporized. It sure didn't get the positive reaction I had hoped for. All I can say is, rather than looking back, look to the future of OUCH. To those I have offended bringing this back up, I apologize. Now, where's the vaporizer gun? I'd like to use it....... Cathi
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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: I have a dream Reply #34 - Oct 15^th, 2008 at 10:10am One question cathi. If people don't look back, how are they going to avoid the mistakes of the past (not saying that any were made, don't know cos' I haven't been around that long)? 'darlin
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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: I have a dream Reply #35 - Oct 15^th, 2008 at 10:18am Melissa wrote on Oct 15^th, 2008 at 10:00am: I wish I was a good community organizer, cause then I could get OUCH going on the right track, you betcha! If you can get Mickey Mouse registered at O.U.C.H., we'll have to make you president! j/k
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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: I have a dream Reply #36 - Oct 15^th, 2008 at 10:20am Kevin_M wrote on Oct 15^th, 2008 at 10:18am: Melissa wrote on Oct 15^th, 2008 at 10:00am: I wish I was a good community organizer, cause then I could get OUCH going on the right track, you betcha! If you can get Mickey Mouse registered at O.U.C.H., we'll have to make you president! j/k LOL Kevin!
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catlind

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Re: I have a dream
Reply #37 - Oct 15^th, 2008 at 10:35am

Ok, I wasn't going to get in this thread, but I'm going to anyway, send all bashes to PM Tongue

I have a question (in response to Svenn's dream) what is it that YOU the members of OUCH that frequent ch.com want to see from the organization? Perhaps, if the membership can state what it wants from the org, they can set a specific goal and try to recruit members to help achieve the goal THEY (the members) set....

Cat

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gizmo

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Re: I have a dream
Reply #38 - Oct 15^th, 2008 at 1:33pm

Cathi_Pierce wrote on Oct 15^th, 2008 at 10:05am:

This thread needs to be locked...or better yet, vaporized. It sure didn't get the positive reaction I had hoped for.

No need to vaporize it.
Though the reactions weren't the ones you hoped for there at least were reactions.
As Barb already said: the thread was started for opinions (regardless if they are "good" or "bad").

And yes, I'm a member of OUCH.

Oliver

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cash5542

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Re: I have a dream
Reply #39 - Oct 15^th, 2008 at 6:53pm

This is very interesting to me. My family background is all migraine then Lisa got CH. We have been blessed with great nuerologists who deal with every kind of headache. Her first appt. was a very informative explanation of the different kinds of headaches and preventions. When she went to Jefferson it was even better. It is called the Headache Clinic. Last summer Lisa's car accident created a new headache which turned out to be like a migraine/tension, constantly. Her doctor dealt with this just as seriously as the CH, giving her a nerve block. He never has mentioned pain as important in her treatment. He just wants her to feel good regardless of the headache type.

The only time I have felt that it might not work to combine the headaches was the group therapy when she was inpatient. She really couldn't relate to the constant daily pain some suffer nor could they relate to the intensisty of her pain.

It sure would be nice if we could help each other some way. I think Jefferson is trying to do this in their clinic.

Charlotte

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Jonny Ex Member	Re: I have a dream Reply #40 - Oct 15^th, 2008 at 6:58pm Seeing that I was part of the start of OUCH, and agree with points on both sides....I will say this I think its better this way.
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