Clusterheadaches.com Message Board


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

        Daily Chat >> General Posts >> I am an OUCH member
        
(Message started by: DonnaH_again on Apr 28^th, 2008, 10:46pm)

Title: I am an OUCH member
Post by DonnaH_again on Apr 28^th, 2008, 10:46pm

I have a very bad habit (?) of not reading into what the poster is trying to express.

I re-read Jackies post and realized "I did it again" and it really galls me.

I "think" she was trying to impress the importance of merely being an OUCH member. It costs nothing, it requires none of your time or anything else except signing up.

How hard is that? But what does it accomplish? A whole lot. It shows that we are HERE, that we have a real PROBLEM with the medical community and insurance companies and that we are here in numbers.

7,000 is big, and since we are here trying to figure out what it will take to find a cure, why not unite and show that we mean business?

I can't imagine a reason not to join.

OUCH has been around for years and I'm surprised that there are only 300 members. What's with this? Are we serious or not?

Title: Re: I am an OUCH member
Post by Redd on Apr 28^th, 2008, 10:49pm

I too, am an OUCH member.

:)

Title: Re: I am an OUCH member
Post by andrewjb on Apr 29^th, 2008, 4:19pm

on 04/28/08 at 22:46:18, DonnaH_again wrote:

:). i think your right, and totally agree with your points. but, " what if your wrong " ? andrew. [Bump]

Title: Re: I am an OUCH member
Post by DonnaH_again on Apr 29^th, 2008, 4:22pm

Andrew..........

Nobody would even notice because it seems normal for me. ;;D

Title: Re: I am an OUCH member
Post by Jackie on Apr 29^th, 2008, 5:18pm

Donna...
Thank you for the post......you 'think' right about what I was trying to say..... :)

We have one (1) new OUCH member from the effort.
Every little bit helps. Doing a little math here and wishing we could get 10% of the ch.com membership to sigh up. :-/

And....I'm still keeping your Judy in my thoughts and prayers.

Andrew.....thank you for the 'bump'...... :)

Much love,
Jackie

Title: Re: I am an OUCH member
Post by brewcrew on Apr 29^th, 2008, 5:36pm

"Hi, my name is Brew and I'm an OUCH member."

"Hi, Brew!"

I admit that I cannot control my addiction;
I recognize a greater power that can give strength;
I examine my past errors with the help of a sponsor;
I want to make amends for these errors;
I am learning to live a new life with a new code of behavior;
I am helping others that suffer from the same addiction.

(anyone who knows me knows that I'm just messin' around, so don't get your knickers in a knot)

Title: Re: I am an OUCH member
Post by Gator on Apr 29^th, 2008, 5:47pm

I think people get registration on the Business Board mixed up with membership of the organization as a whole. You can be a member of OUCH and not be registered on the Business Board. In the January 2008 issue of the OUCH Newsletter, OUCH reported:

Quote:

As of January 25, 2008 the OUCH membership totaled 3123 people from 60 countries.

That being said, I'm like DonnaH. I can't imagine why a cluster headache sufferer or supporter would not join OUCH, except that they did not know about the organization.

Which brings me to another topic... We need to get our message out there to people beyond the internet. How many thousands (or hundreds of thousands) of sufferers are out there who don't use the internet? We sit here enjoying the warm glow of understanding and support, but who helps them?

One of the committees in which OUCH needs experienced people is the Media Committee. We need people with experience in communicating via newspaper, magazine, radio and television. If that's you, sign up and put your talents to use helping others who may otherwise suffer in painful silence.

There are other areas in which OUCH needs people who are willing to share their experience and time. If you are not a member of OUCH - join us. If you are a member of OUCH and you have experience and skill that you think could be useful, please check out the Volunteer Center in the Members' Area of the OUCH website:

http://www.ouch-us.org/members/vol_center.htm

One last thing and I'll end this commercial, OUCH operates solely on donations, grants and sales from the OUCH Store. Even if you don't think you have the time or experience to volunteer you can still help OUCH make a difference by making a tax deductible donation.

http://www.ouch-us.org/donate.htm

Mike Day
Organization for Understanding
Cluster Headaches
http://www.ouch-us.org

Title: Re: I am an OUCH member
Post by Linda_Howell on Apr 29^th, 2008, 5:51pm

Quote:

We have one (1) new OUCH member from the effort.

And how friggin sad is that? Everyone wants help. Everyone wants this condition to be recognized, yada, yada, yada...but they'd rather sit around here moaning or posting silly crap then spend a few mins. signing up for the only entity that might help us all.

Sorry. Just really angry right now with the apathy.

Title: Re: I am an OUCH member
Post by Callico on Apr 29^th, 2008, 6:01pm

I'm a member!

Brew, my knickers were already in a knot. YOU didn't help! ;;D

jerry

Title: Re: I am an OUCH member
Post by Jackie on Apr 29^th, 2008, 6:25pm

Gator....

Is that 3,123 count from OUCH's inception?

Would be curious to know how many have joined in the past year......

Title: Re: I am an OUCH member
Post by Melissa on Apr 29^th, 2008, 6:40pm

on 04/29/08 at 18:25:56, Jackie wrote:

Would be curious to know how many have joined in the past year......

111 between Jan 2, 2008 & March 27, 2008.

Title: Re: I am an OUCH member
Post by Jackie on Apr 29^th, 2008, 6:58pm

Thank you, Mel..... :)

Title: Re: I am an OUCH member
Post by KJ on Apr 29^th, 2008, 7:05pm

I joined. :)

Love being around you crack minded folks. ;)

KJ

Title: Re: I am an OUCH member
Post by Jonny on Apr 29^th, 2008, 7:26pm

on 04/29/08 at 18:25:56, Jackie wrote:

Gator....

Is that 3,123 count from OUCH's inception?

When I was on the membership committie I was dragging them in off the street.....LOL ;)

Even paying the dues for lots of them! :'(....Then the membership went free. :(

Title: Re: I am an OUCH member
Post by M.R. on Apr 29^th, 2008, 7:34pm

I remember those days. I still am not so sure even $10 dues wouldn't be a bad idea.I would help throw in for those that couldn't pay. That would give OUCH some working capital. Maybe then the convention wouldn't be so expensive.

the Mike that always has ideas, but may not always be much help.

Edit for typing spasm

Title: Re: I am an OUCH member
Post by Linda_Howell on Apr 29^th, 2008, 10:50pm

Mike...No. A $ 10.00 membership is not a bad idea at all. But we decided to not go with a fee to join. So it is free. No one here who "takes" from this site and from the benefits OUCH has to offer should take this lightly.

Every one of the 7000 people here on ch.com took the few mins. to register with DJ. How much more could be gained from OUCH who is having in-roads with the medical community..and how sad to see such few numbers.

I guess what they say of all organizations, even the big ones. There is always a few who work and a whole lot who take.

OUCH is the exception to the rule that anything free...is worthless.

And I'm gonna keep bumping and adding to this thread til you're so sick and tired of hearing from me that you sign up and send me the proof. [smiley=deal2.gif] [smiley=deal2.gif] [smiley=deal2.gif] [smiley=deal2.gif]

Title: Re: I am an OUCH member
Post by DonnaH_again on Apr 30^th, 2008, 12:25am

Go, Linda.......Go, Linda. Right behind you.

I can't for the life of me figure out why EVERYONE hasn't joined.

Isn't that relative to rowing? Different site....same goal.

Title: Re: I am an OUCH member
Post by Argonaut on Apr 30^th, 2008, 12:27am

I just joined :)

Wonder if OUCH needs a web designer? ;;D

Title: Re: I am an OUCH member
Post by DonnaH_again on Apr 30^th, 2008, 12:32am

I don't know about the web designer, but I sure am happy and proud that you joined. Welcome to OUCH.

Title: Re: I am an OUCH member
Post by Linda_Howell on Apr 30^th, 2008, 12:35am

Good for you Argonaut. :)

Mike (gator) is our web master as well as the designer of OUCH. While we don't need that specifically, if you have artistic ability I am sure we could use you for something. Please click on the volunteer area at OUCH...so we can um...uh...use you. ;)

Linda

Title: Re: I am an OUCH member
Post by Gator on Apr 30^th, 2008, 12:36am

on 04/30/08 at 00:27:43, Argonaut wrote:

I just joined :)

Wonder if OUCH needs a web designer? ;;D

http://www.ouch-us.org/members/vol_center.htm

Clear enough?

Title: Re: I am an OUCH member
Post by barry_sword on Apr 30^th, 2008, 6:43am

I joined OUCH about a year ago. Strength in numbers. ;)

Title: Re: I am an OUCH member
Post by Ray on Apr 30^th, 2008, 7:49am

I'm an OUCHie and I'm OK...

At least mostly OK.

Thanks for this discussion,

Ray

Title: Re: I am an OUCH member
Post by Gator on Apr 30^th, 2008, 8:16am

Ladies and Gentlemen,

If you are not going to register with your REAL name and REAL contact information, please don't bother. It does absolutely NO good for anyone, especially you, to register with a last name of dfgdfg or any other random grouping of letters, fake e-mail address and fake mailing address. We have enough work to do without having to go through and delete peoples' attempts at trying to be cute. Save cute or funny for the Jokes Board here on ch.com.

We need REAL information to report membership totals to various headache and research organizations, to complete grants applications and to be able to contact you in case of events or clinical trials in your area.

For those of you who have registered recently using your real information, OUCH thanks you. Your support does make a difference.

Best regards,

Mike Day
Organization for Understanding
Cluster Headaches
http://www.ouch-us.org

Edited to add: OUCH respects the privacy of its members. We do not give out, sell or rent personally identifiable information to any third parties, except where required by law. Internally, access to personal information is strictly limited to those members of the OUCH staff who need it to perform their jobs.

Title: Re: I am an OUCH member
Post by Linda_Howell on Apr 30^th, 2008, 11:47am

Hey Barry? Did your wife also join? ;)

Title: Re: I am an OUCH member
Post by barry_sword on Apr 30^th, 2008, 11:50am

on 04/30/08 at 11:47:49, Linda_Howell wrote:

Hey Barry? Did your wife also join? ;)

No she didn't. Good point. She is working until 9:30pm but she will ASAP.
Thanks Linda. :)

Title: Re: I am an OUCH member
Post by alchemy on Apr 30^th, 2008, 11:58am

I'm a member

Title: Re: I am an OUCH member
Post by LeLimey on Apr 30^th, 2008, 1:10pm

on 04/30/08 at 11:58:20, alchemy wrote:

I'm a member

Can't argue with that gorgeous! ;;D

Where have you been? The toilets are a flippin' disgrace!

Title: Re: I am an OUCH member
Post by Angie on Apr 30^th, 2008, 9:40pm

I am now a member of OUCH :)

Title: Re: I am an OUCH member
Post by DonnaH_again on Apr 30^th, 2008, 10:20pm

Congratulations NEW MEMBERS!!

We're on a roll...............let's not stop now.

Title: Re: I am an OUCH member
Post by Linda_Howell on Apr 30^th, 2008, 10:27pm

Thank you Angie. You rock.

Thank you everyone who is stepping up to the plate.

Title: Re: I am an OUCH member
Post by kcopelin on May 1^st, 2008, 11:08am

Bump

Title: Re: I am an OUCH member
Post by mezza on May 1^st, 2008, 9:32pm

linda

i joined over a month ago and i support the cause!!!

kelly

Title: Re: I am an OUCH member
Post by Linda_Howell on May 1^st, 2008, 10:59pm

Good Mezza...thank you. And you're new here too. Doubly impressive.

Title: Re: I am an OUCH member
Post by catlind on May 5^th, 2008, 1:04pm

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

Title: Re: I am an OUCH member
Post by Cathi_Pierce on May 5^th, 2008, 1:21pm

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!

Title: Re: I am an OUCH member
Post by Sandy_C on May 5^th, 2008, 2:05pm

I thought I posted to this thread, but can't find myself :P, 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

Title: Re: I am an OUCH member
Post by michael on May 6^th, 2008, 11:04am

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

Title: Re: I am an OUCH member
Post by Cathi_Pierce on May 6^th, 2008, 2:28pm

Cat said it best.................

DOES YOUR HEAD HURT?

Join OUCH..............be counted!

ohh, yeah, this is a bump

Title: Re: I am an OUCH member
Post by mummymac on May 6^th, 2008, 5:20pm

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.

Title: Re: I am an OUCH member
Post by DonnaH_again on May 6^th, 2008, 6:28pm

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?

Title: Re: I am an OUCH member
Post by Brew on May 6^th, 2008, 7:31pm

on 05/06/08 at 18:28:12, DonnaH_again wrote:

It comes via e-mail. Check to see what e-mail address you have on file with OUCH. Maybe it needs to be updated.

Title: Re: I am an OUCH member
Post by DonnaH_again on May 6^th, 2008, 8:03pm

You're probably right......my computer was down for awhile. I'll check it out.

Thanks, Brew

Title: Re: I am an OUCH member
Post by Linda_Howell on May 6^th, 2008, 8:44pm

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

Title: Re: I am an OUCH member
Post by kcopelin on May 7^th, 2008, 10:20am

bump

Title: Re: I am an OUCH member
Post by BobG on May 7^th, 2008, 12:09pm

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!

Title: Re: I am an OUCH member
Post by kevmd on May 7^th, 2008, 1:56pm

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?

Title: Re: I am an OUCH member
Post by Linda_Howell on May 7^th, 2008, 2:53pm

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

Title: Re: I am an OUCH member
Post by Gator on May 7^th, 2008, 3:59pm

on 05/07/08 at 13:56:59, kevmd wrote:

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!!!

Title: Re: I am an OUCH member
Post by midwestbeth on May 7^th, 2008, 6:26pm

I'm a member!! And I do get monthly emails. Thanks Gator. :)

Title: Re: I am an OUCH member
Post by Linda_Howell on May 7^th, 2008, 7:39pm

Beth, Is your husband? ;)

Title: Re: I am an OUCH member
Post by syrs842 on May 7^th, 2008, 11:29pm

Hi all,
I haven't been here in a few days because I've been suffering some severe severe CH. I was reading all the posts about OUCH and I have to admit I really don't know much about it. But I do know that I may never come here again for any suggestions because I take what Linda said very personally. I came her for suggestion on how to deal with this horrible affliction that we all have been dealt. I may be ignorant to this because I have only been recently diagnosed with both CH and regular migraines. I sincerely hope that by posting this it doesn't fall under the catagory of crap.
Thank you to all that have helped me,
Pat

Title: Re: I am an OUCH member
Post by Linda_Howell on May 8^th, 2008, 12:49am

wow...

Pat, I am at a loss as to know what you are referring to. I have gone over this specific thread now 3 times and cannot find a post of yours at all. Can you enlighten me as to what you are talking about?

Quote:

If THIS is it....sorry, I stand by that comment wholeheartedly but it certainly wasn't aimed at you personally so I am really confused.

Title: Re: I am an OUCH member
Post by midwestbeth on May 8^th, 2008, 9:36am

on 05/07/08 at 19:39:52, Linda_Howell wrote:

Beth, Is your husband? ;)

Done ;)

Title: Re: I am an OUCH member
Post by LeLimey on May 8^th, 2008, 9:58am

Pat I hope you've had help and support because Lord knows there is a ton of it here for you.

Sometimes we're slower in answering post's depending on who's online and how frail we're feeling that day ourselves but we do all care greatly.

I can assure you that whatever Linda said was absolutely not in any way meant to hurt anyone least of all you. You're brand new to the site, you're looking for info about this horrible evil condition and you obviously don't know about OUCH yet! If you do join, and I also really hope you will, you give all of us a stronger voice when we shout and stomp together!!

I think one of the most insidious parts of CH is the ups and downs, we're either deliriously happy that we aren't getting hit or we're in the depths of despair because we are and it's all so dark.

With such extremes of mood and so many of us it's almost inevitable that sometimes we all, each and every one of us feel caught in the cross fire.

You ARE welcome, you ARE needed and I am really, REALLY looking forward to getting to know you better. I do know Linda, all four foot and a hairsbreadth of her LOL She is a very dear friend, someone who is not just passionate but driven when it comes to helping ch'ers and one of the staunchest supporters we have whilst suffering herself. I promise you, of all the mean and nasties here (and that's me! ;) ) Linda isn't one. We won't let her into the mean and nasty clique 'cos she'll try to reform me and that ain't happening!

I also post more crap than anyone else too!

Hang in there Pat, we're all in this together.

Helen