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Topic: I am an OUCH member (Read 2155 times) |
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barry_sword
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Re: I am an OUCH member
« Reply #25 on: Apr 30th, 2008, 11:50am » |
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on Apr 30th, 2008, 11:47am, Linda_Howell wrote:
Hey Barry? Did your wife also join?  |
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No she didn't. Good point. She is working until 9:30pm but she will ASAP.
Thanks Linda. 
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QUIT SMOKING SEPT. 03 2005,
http://barrysword.blogspot.com
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alchemy
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get out of my head
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Re: I am an OUCH member
« Reply #26 on: Apr 30th, 2008, 11:58am » |
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I'm a member
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LeLimey
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Re: I am an OUCH member
« Reply #27 on: Apr 30th, 2008, 1:10pm » |
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on Apr 30th, 2008, 11:58am, alchemy wrote:
Can't argue with that gorgeous! 
Where have you been? The toilets are a flippin' disgrace!
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Angie
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Re: I am an OUCH member
« Reply #28 on: Apr 30th, 2008, 9:40pm » |
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I am now a member of OUCH
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DonnaH_again
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Re: I am an OUCH member
« Reply #29 on: Apr 30th, 2008, 10:20pm » |
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Congratulations NEW MEMBERS!!
We're on a roll...............let's not stop now.
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Linda_Howell
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Re: I am an OUCH member
« Reply #30 on: Apr 30th, 2008, 10:27pm » |
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Thank you Angie. You rock.
Thank you everyone who is stepping up to the plate.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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kcopelin
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good grief
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Re: I am an OUCH member
« Reply #31 on: May 1st, 2008, 11:08am » |
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Bump
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Words count, chose carefully.
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mezza
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Re: I am an OUCH member
« Reply #32 on: May 1st, 2008, 9:32pm » |
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linda
i joined over a month ago and i support the cause!!!
kelly
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Linda_Howell
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Re: I am an OUCH member
« Reply #33 on: May 1st, 2008, 10:59pm » |
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Good Mezza...thank you. And you're new here too. Doubly impressive.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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catlind
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Re: I am an OUCH member
« Reply #34 on: May 5th, 2008, 1:04pm » |
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Bump
Numbers folks, numbers. That is our strength and our power. Wanna know how migraines got all those kewl triptans made and all those drugs and media and treatment and recognition and medical professionals to stand up and pay attention???
Numbers. An epidemiology study was done by Richard Lipton. He (along with many other very talented individuals) identified the large demographic of sufferers and realized there were no data usable numbers available to get the funding and push for treatments and research. Everybody knew there were migraine sufferers, but no one knew exactly how large that population was, or exactly how much it impacted the social landscape, from loss time at work to low productivity and poor quality of life.
Richard Lipton WILL do an epidemiology study on clusters too, as soon as there are enough numbers to show there is a population that warrants the work and funding required to do the study. This is something that has been with OUCH since 2003. It's known that it's available and can be done, and it will be done; it can't be started, can't even be conceptualized until there are numbers enough in a usable format. Those numbers, that format, all of it will come from OUCH and it's sister organizations for clusters. Join OUCH, get your name in there, lets show the numbers.
Let me try to make this really clear....an epidemiology study on clusters would lead to funding for research into both treatment and cause and origin; to insurance requirements and laws such as were effected for lyme disease and diabetes - it is unlawful for an insurance company to deny payment for medications and treatment, in the case of diabetes because it is life threatening - and after learning how it all works, the morbidity rate of the pain of CH is a condition that would qualify for legislation to make it ILLEGAL for an insurance company to deny payment or coverage for treatment of CH; to government allocated resources under disability, FMLA and many other areas - employers would not be able to deny you employment, nor terminate employment (speaking generally here) based on CH anymore than they would for something like diabetes or MS; to show the actual cost of loss of production in the work place, the impact and emotional and social expense in families and society as a whole; to open funding from government and private sectors to research cause and origin and develop CH specific treatments instead of off label uses - we could have drugs developed JUST FOR CH; to allow research into alternative treatments and see new medications developed; to bring public awareness to the devastating effects of this disease; to initiate the process of integrating the many facets of treatment means - from financial assistance, social assistance, mental health support, medical support, personal rights and freedoms and laws enacted to ensure such items, ongoing in-depth research for EVERY level and aspect of CH from origin to genetics; to getting publications and products out in the community to help identify undiagnosed sufferers and direct them to appropriate sources of assistance and treatment; to every person on the planet knowing that CH isn't just a headache, it's a full syndrome that involves physical medical systems throughout the body, not just in your head;
I could go on, believe me, I could go on and on.
Join OUCH. Get those numbers to speak for you. It's not hard work, all you have to do is register with OUCH, sign up and let your number be counted.
Does your head hurt? Mine does. I want mine to stop, do you? Yes? JOIN OUCH. That very small and seemingly insignificant step has the power to accomplish exactly that - to make your pain stop. You don't have to do anything heroic, you just have to join and let your numbers be counted.
Then the folks who volunteer and work with OUCH and other CH organizations will have the numbers that provide them the power to initiate the projects that result in things like an epidemiology study being done and that results in the very real, very definite means to make YOUR PAIN STOP.
Do you understand now? It's really that simple. Truly it is. Join OUCH. That's all you HAVE to do. If you WANT to do more, that is even better! There is much to do if you want to volunteer, but all you HAVE to do is JOIN OUCH.
Cat
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Cathi_Pierce
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Re: I am an OUCH member
« Reply #35 on: May 5th, 2008, 1:21pm » |
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SOOOO, Cat,
Let me see if I have this right..............the MORE Clusterheads who make themselves known, the more likely it is that research dollars will go up.....and a control/cure comes closer to reality?
I'm an OUCH member..............
Count me in!
Cathi
PS: THANK YOU, Cat, for your words............now, be a part of a LARGE and growing group...do it for yourself, do it for all the others who consider you part of the family!
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Sandy_C
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Re: I am an OUCH member
« Reply #36 on: May 5th, 2008, 2:05pm » |
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I thought I posted to this thread, but can't find myself  , which is nothing unusual. So, If I have posted twice, please forgive me.
I am a proud member of OUCH.
To all newbies, and to those on these boards who have been diagnosed with CH, but have yet to check in to OUCH.
Please, click on the button to your left, highlighted in yellow, 10th button down and go to the OUCH website.
Join. It won't cost you a dime.
This website is dedicated to educating sufferers, educating the public, educating the medical community, and trying to support the finding of a cure for CH.
It is a non profit organization that is doing wonderful things worldwide for the benefit of CH sufferers.
You have nothing to lose and everything to gain.
Please join.
Sandy
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Lean on me when you're not strong
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michael
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Re: I am an OUCH member
« Reply #37 on: May 6th, 2008, 11:04am » |
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I signed up at the weekend.
However, I then realized that I get the newsletter from OUCH each month so maybe I was a member already - although I cant remember doing it.
Dont know if I'm a member twice or not now.
I'm 55 and been a clusterhead 41 years, my brain is frazzeled.
Mike
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Cathi_Pierce
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Re: I am an OUCH member
« Reply #38 on: May 6th, 2008, 2:28pm » |
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Cat said it best.................
DOES YOUR HEAD HURT?
Join OUCH..............be counted!
ohh, yeah, this is a bump
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Life is not measured by the number of breaths we take, but by the moments that take our breath away.
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mummymac
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Re: I am an OUCH member
« Reply #39 on: May 6th, 2008, 5:20pm » |
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I know I joined at the begining of the year, I rec'd updates this weekfrom OUCH so I must be a member. I cannot get into the memebers page though for some reasom my new computer does not like it.
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Tanya
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DonnaH_again
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Re: I am an OUCH member
« Reply #40 on: May 6th, 2008, 6:28pm » |
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I don't know anything about a monthly newsletter from OUCH...is there one, or am I not a member thru some glitch? Nor do I receive updates from OUCH.
Perhaps there is some misunderstanding as to whom these thing are coming from?
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Brew
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Re: I am an OUCH member
« Reply #41 on: May 6th, 2008, 7:31pm » |
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on May 6th, 2008, 6:28pm, DonnaH_again wrote:I don't know anything about a monthly newsletter from OUCH...is there one, or am I not a member thru some glitch? Nor do I receive updates from OUCH.
Perhaps there is some misunderstanding as to whom these thing are coming from?
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It comes via e-mail. Check to see what e-mail address you have on file with OUCH. Maybe it needs to be updated.
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Always remember that you're unique, just like everyone else.
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DonnaH_again
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Re: I am an OUCH member
« Reply #42 on: May 6th, 2008, 8:03pm » |
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You're probably right......my computer was down for awhile. I'll check it out.
Thanks, Brew
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Linda_Howell
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Re: I am an OUCH member
« Reply #43 on: May 6th, 2008, 8:44pm » |
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Donna get with Melissa. She is in charge of membership. At first glance I didn't see your name there, but I could be blind.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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kcopelin
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good grief
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Re: I am an OUCH member
« Reply #44 on: May 7th, 2008, 10:20am » |
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bump
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Words count, chose carefully.
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BobG
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Re: I am an OUCH member
« Reply #45 on: May 7th, 2008, 12:09pm » |
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I have an OUCH card that says I'm a member in good standing. It was authorized by Bob P. My wife has a membership card. My grandson has a membership card.
But, in fine print at the bottom, the cards say they expire April 25, 2003. Paid good money for those cards, they better still be good!
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kevmd
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Re: I am an OUCH member
« Reply #46 on: May 7th, 2008, 1:56pm » |
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I get the news letter emailed to me but I am not sure if I am a member or not. i may have signed up years ago but how do I know if I am a member. I know its a stupid question but am I a member???? How can I find out?
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Linda_Howell
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Re: I am an OUCH member
« Reply #47 on: May 7th, 2008, 2:53pm » |
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Kev,
Click on any one of Melissas posts and shoot her a PM. She is in charge of the membership committee and she should be able to help you.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Gator
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Re: I am an OUCH member
« Reply #48 on: May 7th, 2008, 3:59pm » |
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on May 7th, 2008, 1:56pm, kevmd wrote:| I get the news letter emailed to me but I am not sure if I am a member or not. i may have signed up years ago but how do I know if I am a member. I know its a stupid question but am I a member???? How can I find out? |
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The newsletter doesn't get mailed out because people on dialup would kill me if I sent them a huge file in their e-mail. What does get sent out is a mass communication once a month (more often if there is urgent news) that let's members know the newsletter is ready and any other updates from OUCH. Only members get sent an e-mail. If you are a member and you don't get the monthly e-mail, please let me know. I send out a test e-mail to a small list of addresses to make sure it works then send it out to the membership at large.
I have no way of knowing that you're not getting the monthly communication if you don't tell me!!!
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midwestbeth
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Re: I am an OUCH member
« Reply #49 on: May 7th, 2008, 6:26pm » |
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I'm a member!! And I do get monthly emails. Thanks Gator.
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Do more than exist - live
Do more than touch - feel
Do more than look - observe
Do more than read - absorb
Do more than hear - listen
Do more than listen - understand
~ John Rhodes
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