Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2005 General Board Posts >> What do you want from OUCH?
        
(Message started by: thomas on May 11^th, 2005, 4:43pm)

Title: What do you want from OUCH?
Post by thomas on May 11^th, 2005, 4:43pm

Where do you want to see OUCH in the next 5 years, and what are some things you would like to see changed right now? Like as far as treatment, prescriptions, funding for research etc.

Title: Re: What do you want from OUCH?
Post by Jonny on May 11^th, 2005, 4:51pm

The ability to enter the OUCH site

Title: Re: What do you want from OUCH?
Post by thomas on May 11^th, 2005, 4:56pm

on 05/11/05 at 16:51:51, Jonny wrote:

The ability to enter the OUCH site

That would be a good start. I think all members should be able to access the site.

Title: Re: What do you want from OUCH?
Post by Svenn on May 11^th, 2005, 5:56pm

My dream is that OUCH really soon start to work as a organitation and not as a kindergarden as now

Today OUCH DESPERATLY needs a major reconstruction
before it changes to a sunday-club for the few

Svenn

Title: Re: What do you want from OUCH?
Post by thomas on May 11^th, 2005, 6:15pm

on 05/11/05 at 17:56:28, Svenn wrote:

Well there is some good discussion going on over there right now, very positive and forward thinking exchange of ideas.

Title: Re: What do you want from OUCH?
Post by Carl_D on May 11^th, 2005, 7:21pm

I want to see OUCH grow and succeed. This organization did alot for me in its early stages, and I am willing to do anything I can to help OUCH - since it is the only organization dedicated to cluster headaches. As much as I want to see the beast dead, I want to see OUCH move on to great things. I even had an idea for a :15 second PSA and a :30 second PSA, and am currently writing a couple of articles for Chuck's consideration in the OUCH newsletter.

Peace,
Carl D

Title: Re: What do you want from OUCH?
Post by alienspacebabe on May 11^th, 2005, 7:34pm

This is what I'd like to see:

1. a place for CHers to come to for resources in getting medications and treatments paid for by insurance

2. education of doctors, either through seminars held by the more prominent CHers or through videos and paper media sent to doctors who are open to learning more

3. finding a way to get doctors to be willing to listen to *us* about what CH is really like

4. an organization that raises funds and donates to research about CH (causes, treatments, etc)

5. an organization that pushes for research on CH

6. education of the general public about CH

7. push for the addition of cluster headaches, in some way (footnote, etc), to the ads for Imitrex

as for management of OUCH:

quarterly reports to the members regarding current issues up for discussion and other items being worked on, including basic financial information

member liasons

specific short term and long term goals (getting CH on imitrex ads, working for certain grants, etc)

JMHO,
Lizzie

Title: Re: What do you want from OUCH?
Post by Charlie on May 11^th, 2005, 8:36pm

Useful CH information and a place where one wants to go.

Charlie

Title: Re: What do you want from OUCH?
Post by don on May 11^th, 2005, 8:47pm

Quote:

This organization did alot for me in its early stages,

Carl,

What did OUCH do for you then that can be done for sufferers now? How can it be done better?

Title: Re: What do you want from OUCH?
Post by ckelly181 on May 11^th, 2005, 9:33pm

Stronger communication within the ranks...volunteer coordinator(s) who make specific requests for specific opportunities, follows up when help is offered - a clear path for volunteers.

Chris

Title: Re: What do you want from OUCH?
Post by Redneck on May 11^th, 2005, 10:24pm

on 05/11/05 at 20:36:11, Charlie wrote:

Useful CH information and a place where one wants to go.

Charlie

Ditto

Title: Re: What do you want from OUCH?
Post by sandie99 on May 12^th, 2005, 3:12am

on 05/11/05 at 19:34:53, alienspacebabe wrote:

Well said! :)

Title: Re: What do you want from OUCH?
Post by BarbaraD on May 12^th, 2005, 7:53am

Bump

Title: Re: What do you want from OUCH?
Post by thomas on May 12^th, 2005, 8:40am

Post removed.

Title: Re: What do you want from OUCH?
Post by don on May 12^th, 2005, 9:11am

Dont blame the membership. They've been alienated from OUCH.The OUCH BOD and officers need to take the lead here.

They need to put together some kind of package to offer it's membership which in kind will generate more support and interest.

Title: Re: What do you want from OUCH?
Post by thomas on May 12^th, 2005, 9:32am

You're absolutely right don, I beg forgiveness for my harsh words. It was just frustrating for me this morning. I am tired of wallowing around in my own pain as part of a "club". I guess the older I get the more cantankerous I am. Plus being on the "supporter" side of the aisle has really changed my opinions on ch. I can't stand some one I love so much enduring this. It was different when it was just me living with my own pain. Now I see that pain reflected in the eyes of the person I care the most about. I can't sit idly by and do nothing any more. Prayers and vibes are ok, jokes and song lyrics are fun, getting together and having a few beers is a blast, but none of that does ONE DAMN THING to eliminate CH.

Title: Re: What do you want from OUCH?
Post by Slammy on May 12^th, 2005, 9:38am

What do I want from OUCH?

hmm.. more sex.... they haven't done jack for Slammy in that arena! ::)

Slammy 8)

Title: Re: What do you want from OUCH?
Post by thomas on May 12^th, 2005, 9:41am

on 05/12/05 at 09:38:50, Slammy wrote:

What do I want from OUCH?

hmm.. more sex.... they haven't done jack for Slammy in that arena! ::)

Slammy 8)

Dude, if you can't get laid in the Carolinas, you got problems. ;)

Title: Re: What do you want from OUCH?
Post by Slammy on May 12^th, 2005, 9:44am

on 05/12/05 at 09:41:02, thomas wrote:

Dude, if you can't get laid in the Carolinas, you got problems. ;)

You know, I thought about that....... have you seen what runs around out here? Not sure I want to get laid in the Carolinas! ;;D

Ahhh.. miss the Socal beaches! :-[

Slammy 8)

Title: Re: What do you want from OUCH?
Post by seasonalboomer on May 12^th, 2005, 9:48am

on 05/12/05 at 09:41:02, thomas wrote:

Dude, if you can't get laid in the Carolinas, you got problems. ;)

Title: Re: What do you want from OUCH?
Post by seasonalboomer on May 12^th, 2005, 9:50am

on 05/12/05 at 09:41:02, thomas wrote:

Dude, if you can't get laid in the Carolinas, you got problems. ;)

I heard that and I'm refraining from comment as this isa thread with serious content.

Title: Re: What do you want from OUCH?
Post by Slammy on May 12^th, 2005, 9:53am

on 05/12/05 at 09:50:07, seasonalboomer wrote:

I heard that and I'm refraining from comment as this isa thread with serious content.

Bahahaha! [smiley=laugh.gif]

ummm....right!

Slammy 8)

Title: Re: What do you want from OUCH?
Post by Tiannia on May 12^th, 2005, 2:03pm

What do I want from OUCH?

Well to be honest I dont know what they are doing. I am not sure what they can actually do from a legal stand point as I dont understand the organization and what guidelines they have to follow.

So while I would like to say that I would like to see them to seminars and such to educate doctors, I am not sure that they can do that as it takes money to do that and I know that is one place that we are really really short.

I would like to see information on how to work with insurance companies to get what we need from them without the run around. ie: liasons with the insurance companies (at least the larger ones) that our CH claims can go through a single person so that we are not fighting a new battle each time a doctor prescribes something different.

I would like to see OUCH work more closely with the drug companies to get treatments and testing for Ch only. Now I know that thei is a touchy subject for many because we are a small part of the population (as a whole) and it is not cost effective for them to just focus on CH'ers but I would thinkt hat the life long treatment / continuous treatment that CH'ers need -vs- the treatment for migrains would get someones attention as well as their pocketbook, which in the end controls how they think.

I would like to see something for supporters. I know that there are a lot of women here who suffer, but you dont hear from their husbands very much. While there are a lot of supporters here, I honestly believe that there is a special need for male supporters. There is a psychological need to protect who they love and CH really fucks with them. This does not mean that I do not want to see the supporters forum stopped or only limited to men, I am just speaking form my own experiance.

Well, that is at least a few things.

I dont go to the OUCH forums. Every time I did, I got frustrated because of the BS there. And I fully admit to not going there for at least the past 6 mo.

-Tia

Title: Re: What do you want from OUCH?
Post by tommyD on May 14^th, 2005, 6:13am

needsabump

Title: Re: What do you want from OUCH?
Post by LeLimey on May 14^th, 2005, 7:35am

Tia - fantastic post! I'm impressed, heartened and humbled by it. You are one terrific person y'know?! [smiley=hug.gif]

Title: Re: What do you want from OUCH?
Post by BarbaraD on May 14^th, 2005, 7:42am

There's several threads on the OUCH site now where members can give their input.

If you want to see OUCH suceed, go there and put your comments to good use.

The only way OUCH will do what members want is if the members get involved enough to LET OUCH know what you want.

BD

Title: Re: What do you want from OUCH?
Post by tommyD on May 17^th, 2005, 7:03am

Another bump...

The conversation is getting constructive...

Title: Re: What do you want from OUCH?
Post by Tiannia on May 17^th, 2005, 11:16am

on 05/14/05 at 07:35:44, LeLimey wrote:

Tia - fantastic post! I'm impressed, heartened and humbled by it. You are one terrific person y'know?! [smiley=hug.gif]

Thanks Helen. Nice to know that I was able to get my point across.

Blessed be, my sister
-Tia