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Topic: What do you want from OUCH? (Read 595 times) |
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thomas
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What do you want from OUCH?
« on: May 11th, 2005, 4:43pm » |
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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.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Jonny
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Re: What do you want from OUCH?
« Reply #1 on: May 11th, 2005, 4:51pm » |
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The ability to enter the OUCH site
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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thomas
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Re: What do you want from OUCH?
« Reply #2 on: May 11th, 2005, 4:56pm » |
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on May 11th, 2005, 4:51pm, Jonny wrote:| The ability to enter the OUCH site |
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That would be a good start. I think all members should be able to access the site.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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The mad viking
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Re: What do you want from OUCH?
« Reply #3 on: May 11th, 2005, 5:56pm » |
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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
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Always Look on The Bright Side of Life
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thomas
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Re: What do you want from OUCH?
« Reply #4 on: May 11th, 2005, 6:15pm » |
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on May 11th, 2005, 5:56pm, Svenn wrote: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 |
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Well there is some good discussion going on over there right now, very positive and forward thinking exchange of ideas.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Carl_D
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Re: What do you want from OUCH?
« Reply #5 on: May 11th, 2005, 7:21pm » |
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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
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alienspacebabe
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Re: What do you want from OUCH?
« Reply #6 on: May 11th, 2005, 7:34pm » |
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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
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Charlie
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Re: What do you want from OUCH?
« Reply #7 on: May 11th, 2005, 8:36pm » |
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Useful CH information and a place where one wants to go.
Charlie
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don
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Re: What do you want from OUCH?
« Reply #8 on: May 11th, 2005, 8:47pm » |
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Quote:| This organization did alot for me in its early stages, |
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Carl,
What did OUCH do for you then that can be done for sufferers now? How can it be done better?
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ckelly181
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Re: What do you want from OUCH?
« Reply #9 on: May 11th, 2005, 9:33pm » |
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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
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Redneck
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Re: What do you want from OUCH?
« Reply #10 on: May 11th, 2005, 10:24pm » |
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on May 11th, 2005, 8:36pm, Charlie wrote:Useful CH information and a place where one wants to go.
Charlie |
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Ditto
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sandie99
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Re: What do you want from OUCH?
« Reply #11 on: May 12th, 2005, 3:12am » |
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on May 11th, 2005, 7:34pm, alienspacebabe wrote: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 |
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Well said! 
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BarbaraD
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Re: What do you want from OUCH?
« Reply #12 on: May 12th, 2005, 7:53am » |
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Bump
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What don't kill ya, Makes ya stonger!
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thomas
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Re: What do you want from OUCH?
« Reply #13 on: May 12th, 2005, 8:40am » |
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Post removed.
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| « Last Edit: May 12th, 2005, 9:27am by thomas » |
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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don
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Re: What do you want from OUCH?
« Reply #14 on: May 12th, 2005, 9:11am » |
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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.
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thomas
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Re: What do you want from OUCH?
« Reply #15 on: May 12th, 2005, 9:32am » |
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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.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Slammy
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Re: What do you want from OUCH?
« Reply #16 on: May 12th, 2005, 9:38am » |
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What do I want from OUCH?
hmm.. more sex.... they haven't done jack for Slammy in that arena! 
Slammy 
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That's it! Everyone out of the pool!
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thomas
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Re: What do you want from OUCH?
« Reply #17 on: May 12th, 2005, 9:41am » |
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on May 12th, 2005, 9:38am, Slammy wrote:What do I want from OUCH?
hmm.. more sex.... they haven't done jack for Slammy in that arena!
Slammy |
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Dude, if you can't get laid in the Carolinas, you got problems. 
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Slammy
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Re: What do you want from OUCH?
« Reply #18 on: May 12th, 2005, 9:44am » |
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on May 12th, 2005, 9:41am, thomas wrote:
Dude, if you can't get laid in the Carolinas, you got problems. |
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You know, I thought about that....... have you seen what runs around out here? Not sure I want to get laid in the Carolinas! 
Ahhh.. miss the Socal beaches! 
Slammy
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That's it! Everyone out of the pool!
" Everytime I try to get out, they PULL me back in! "
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seasonalboomer
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Re: What do you want from OUCH?
« Reply #19 on: May 12th, 2005, 9:48am » |
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on May 12th, 2005, 9:41am, thomas wrote:
Dude, if you can't get laid in the Carolinas, you got problems. |
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seasonal boomer
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seasonalboomer
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Re: What do you want from OUCH?
« Reply #20 on: May 12th, 2005, 9:50am » |
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on May 12th, 2005, 9:41am, thomas wrote:
Dude, if you can't get laid in the Carolinas, you got problems. |
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I heard that and I'm refraining from comment as this isa thread with serious content.
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Slammy
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Re: What do you want from OUCH?
« Reply #21 on: May 12th, 2005, 9:53am » |
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on May 12th, 2005, 9:50am, seasonalboomer wrote:
I heard that and I'm refraining from comment as this isa thread with serious content. |
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Bahahaha! 
ummm....right!
Slammy
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That's it! Everyone out of the pool!
" Everytime I try to get out, they PULL me back in! "
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Tiannia
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Re: What do you want from OUCH?
« Reply #22 on: May 12th, 2005, 2:03pm » |
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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
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tommyD
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Re: What do you want from OUCH?
« Reply #23 on: May 14th, 2005, 6:13am » |
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needsabump
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LeLimey
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Re: What do you want from OUCH?
« Reply #24 on: May 14th, 2005, 7:35am » |
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Tia - fantastic post! I'm impressed, heartened and humbled by it. You are one terrific person y'know?! 
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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