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(Message started by: Donna_D. on Aug 20th, 2004, 1:19am)
Title: I have something to say...and I am going to say it
Post by Donna_D. on Aug 20th, 2004, 1:19am
I do not want the last thing people read about OUCH, to be all gloom and doom before they go to bed tonight,  might cause some folks nightmares ;)

Disclaimer:  This is MY personal opinion NOT necessarily that of my fellow BoD members and Officers.  These are merely words from my mind and my heart, as a clusterheadache sufferer.


That being said...

I want everyone to know that:

I BELIEVE in OUCH and I am PROUD to serve it's Membership!

AND YOU SHOULD TOO!

Day after day I read negative comments about how bad things are over at OUCH.  How there is backstabbing, and lies and secrets being kept.  Has anyone cared to notice what is REALLY happening over on OUCH, lately?

I HAVE.

AND YOU SHOULD HAVE, TOO!

I want everyone to think back in time for a little less than a year.  What has been the MAIN time consuming task for the officers and Board of Director members during that time?

Could it be, Replacing people who QUIT?  Check the boards which, by the way, are now open at the request of the membership and by the UNANIMOUS decision of the current Board of Directors.  

(You are very welcome :)  )

I feel the need, and really the right, to say this because this BoD is working SO HARD right now to pull the pieces of OUCH back together and just as soon as we get things in place somebody else quits!  What purpose did quitting ever serve?  Do you know how much in INVOLVED when you lose Officers and BoD members?  EVERY TIME we lose an officer or BoD member we have to STOP what we are working on and focus on filling the position.  

Do you realize that OUCH is really run by less people than you can count on your fingers and toes?  Do you know how many hats these folks wear?  When was the last time you offered to help?  Did you know you could?  Maybe we have failed in asking for more help.  If we told you what needed to be done, would you volunteer?  ( ;) Or is it just easier to sit back and complain when nothing gets done fast enough? Or even quit when the times get tough...no offense meant to any one individual or persons.)

We are Volunteers, with Families and Jobs, and LIVES away of the keyboard not to mention we have these really bad headaches, just like all of you.    If I were to
give a biography of the Officers and the Members of the BoD you would probably wonder how in the HELL we have the time, health, or energy to work SO HARD for OUCH and its members.

I am not asking for praise and CERTAINLY not for pity, I am only stating a true fact.  We work hard for OUCH.  We would like some help.  Are you willing to step up to the plate and bat or are you just going to heckle the starting lineup?  

You want to know how we are doing it?  We are working HARD as a UNIFIED TEAM.  Have you seen the results of last saturday night's BoD meeting?  You should,  before we post the results from this coming WEEKEND'S meeting... We are pulling together and dedicating enormous amounts of time, OUR TIME GIVEN FROM OUR HEARTS TO OUR FELLOW SUFFERERS, to try and get OUCH stabilized and fully staffed and with any luck and a lot of dedication, to fullfill the goals and missions of OUCH.  

Maybe it is time to throw away the oars and everyone pick up a bat instead and join the team? Leesa, I know you have one!! How about changing your mind and putting it to use knocking out this F*&%&N BEAST that is horribly affecting not only our lives but the lives of all who are around us?  I have an opening on the newsletter staff...need a job?

Anyone else need something to do besides sit around and complain  ;)  We have plenty of work that needs to be done.  Do you have an idea to promote the goals and missions of OUCH?  POST IT!  Do something POSITIVE, I promise it leaves a much better thought in your mind a better taste in your mouth, and hell you might even get a warm fuzzy or two, not to mention the satisfaction of a job well done.  

All I ask is that you try, have some faith, put forth some effort where you can and MAKE OUCH WHAT YOU WANT IT TO BE.  We need ALL of you to make it work.

...I just want everyone to know that all is not rotten in Denmark in fact things are working GREAT.

Thank you for taking the time to read this.  I love each and every one of you...and I mean that from the bottom of my heart.  Take this for what it is worth to YOU.  Because YOU all are who I care about.


Faithfully Yours,


Donna D.
OUCH BoD Member
Editor-OUCH Newsletter
Currently researching FMLA facts and hints for the OUCH Membership
Raising two kids by myself.
Working a full time Job.
Running a household
and supporting my fellow clusterheads round the clock.


Now what is YOUR excuse for not picking up an OAR I mean a Bat?  Ready to step up to the plate yet?


(I promise I won't bean ya with a fastball!  ;) )



edited for spelling
Title: Re: I have something to say...and I am going to sa
Post by Becky on Aug 20th, 2004, 2:47am
BUMP


Thank you DD

Hugs
Bec
Title: Re: I have something to say...and I am going to sa
Post by Gator on Aug 20th, 2004, 3:24am

Quote:
Do you have an idea to promote the goals and missions of OUCH?  POST IT!


Tried that.  Here, not on the ouch board.  I could not, until recently, log into the ouch board.  Got 6 whole replies ranging from "I think we're already doing that" to "good idea, start without me."  2 were actually constructive comments.  Since most, if not all, of the BoD members are members here as well,  I would have expected to see something further on it.  


Quote:
Project Submission « on: 06/13/04 at 23:41:37 »  

The recent newspaper article and the ensuing threads got me thinking about ways to draw attention to our plight.  This may have been tried and failed, but I humbly submit it to the group for your approval.

Start an organized campaign within OUCH and CH.com to do targeted mailings.  Schedule a day at some future date where on that specific date everyone drops a letter into the post to a specific target - media, medical or insurance - pleading our case or in the case of the media asking for them to do a story about what we suffer from.  The "everyone" would be both sufferers and supporters, each sending their own letter.  We could post a "Sample"  letter explaining who we are targetting on that day and an example of what we would like to say to them and a contact point for the recipient to respond to.  Even if only half the membership participated, the target would receive over 3000 letters within about a week's timeframe from all over the world.  That might catch someone's attention.  
 
Like I said I don't know if it has already been tried.   The OUCH and CH.com bbs programs should be able to generate an e-mail to all registered members, telling them about the project and asking for support?   I know our biggest problem will be getting people to agree to do it and then follow through.  Isn't it sad to think we may be our own weakest link?  

Gator


When no one else wanted to participate in my folly, I tried contacting many of the local news agencies and even some nationally syndicated programs as well about doing a story on ch.  Got one answer from a local tv station saying they'd kick the idea around.  That was a couple months ago.  Nothing since.

I am willing to do whatever I can from my little corner of the world.  

Gator
Isn't it sad to think we may be our own weakest link?  
Title: Re: I have something to say...and I am going to sa
Post by pubgirl on Aug 20th, 2004, 4:03am
Donna

I posted as well and wasn't even given an answer [smiley=huh.gif].

I don't mean to knock individuals as I don't know the full story (don't think I want to) and I have a very small idea how incredibly hard individuals work on top of their other commitments.

Unpopular comment from me too (this really WILL be) but I don't think the minutiae of every single disagreement should be open to the members. They happen, of course they happen, but to make them all public just makes it look like a bunch of egos clashing, not a professional group of people running an important organisation.
I think the membership should be told if there is a decision that needs input or discussion and have the chance to contribute their thoughts or even vote, but they don't need to see every word of the rows.

Also (not a dig and no agenda, just information) all the OUCH UK officials have careers, their own businesses in many cases, and children or they care for children too. Most of them add suffering CH to this little set of commitments as well. The only exception to this is the one member of staff we have for administration. Everyone else is a volunteer who fits it all in round their lives and takes no payment, not even expenses often. I don't see how else an organisation like this could work unless exorbitant joining fees were charged

Wendy
Title: Re: I have something to say...and I am going to sa
Post by Jeepgun on Aug 20th, 2004, 7:17am
Ditto Gator and Pubgirl's comments. I offered repeatedly to do mailings, drop off packets to doctors' offices, and asked for a media kit to possibly send to newspapers. I got nothing and no one offered to help, no one asked for my address to which they could send a packet once it was together, NOTHING. "Please help! Please help! Pick up an oar!" Bullshit. It's more like, "Please come participate in our shit-flinging, mud-slinging, and interminably boorish arguing and in-fighting. Fuck that. I'm fed up.

Actions speak louder than words.

You want help? Then find specific jobs and tasks that need doing, post the details, and ask for volunteers. Then SUPPORT those volunteers.
You want help? Then support the people who offer to help and give them what they need in order to help.
You want help? Then the fighting and tail-chasing circle jerk needs to come to an end. NOW.
Title: Re: I have something to say...and I am going to sa
Post by alleyoop on Aug 20th, 2004, 8:28am

on 08/20/04 at 04:03:20, pubgirl wrote:
Unpopular comment from me too (this really WILL be) but I don't think the minutiae of every single disagreement should be open to the members. They happen, of course they happen, but to make them all public just makes it look like a bunch of egos clashing, not a professional group of people running an important organisation.
I think the membership should be told if there is a decision that needs input or discussion and have the chance to contribute their thoughts or even vote, but they don't need to see every word of the rows.


Wendy's right! I don't know of any organization that makes it's employees or membership privy to their BoD discussions, much less leave them open to clients or sponsors. You can color me unpopular too, but I call em like I see em!

Gator, Wendy and Frank- I feel your frustration! You try to contribute and run into a brick wall. No one can blame you for feeling the way you do.

Donna's right though, especially about not being able to get any work done because every time they turn around someone else has quit! Nothing is ever going to get accomplised by throwing blame. The only way to get through this and get on the right track is for everyone who cares to pitch in and work toward a solution. I know everyone on this board wants the same thing I do- a cure for this curse called CH! I think we've got some great people in there working for us now, but they can't do it alone. They need our trust and our support. And 'I' think they need to close the private boards back up. I, for one, trust them to take care of business and look out for our best interests without a need to know what's going on behind closed doors!

............................................alley


[smiley=twocents.gif]
Title: Re: I have something to say...and I am going to sa
Post by juvy on Aug 20th, 2004, 9:03am
Good point D,

Now tell me what to do :)

Honestly, tell me what to do.

April
aka Juvy
Title: Re: I have something to say...and I am going to sa
Post by john_d on Aug 20th, 2004, 9:23am
thanks Donna, I appreciate you and Melissa and others that work diligantly to help OUCH.  But the organization seems very disfunctional to me though, don't know enough about it to understand why.     Good luck.  
Title: Re: I have something to say...and I am going to sa
Post by don on Aug 20th, 2004, 9:54am
1. BOD comprised of professionals outside of the membership

2. Officers who are members with experiance operating a 501(c)3

3. A panel of members who represent the entire membership in discussions.


TA DA!
Title: Re: I have something to say...and I am going to sa
Post by Jeepgun on Aug 20th, 2004, 9:56am
I agree with you, Don.
Title: Re: I have something to say...and I am going to sa
Post by Mark C on Aug 20th, 2004, 9:58am

on 08/20/04 at 09:54:32, don wrote:
1. BOD comprised of professionals outside of the membership

2. Officers who are members with experiance operating a 501(c)3

3. A panel of members who represent the entire membership in discussions.


TA DA!


Working on it...much easier said than done.
Title: Re: I have something to say...and I am going to sa
Post by Peppermint on Aug 20th, 2004, 10:10am
Sis.  I'm glad you let that out.  You have worked very hard as a team player to keep the boat afloat.  But since we're on ch.com....

I agree with some of the comments above.  
I've only been allowed to work on the newsletter... even though recently I've been told I'm not being barred from doing anything else.  I'm not sure about that.  I agree with what some of the other people have said because I've seen them post as well and get no response.  You don't have to post to offer your time to volunteer.  There is email.  

Also, I did see a somewhat uncomfortable negative commentary about how people have something to say, as far as what is happening at Ouch, when they have done NOTHING for OUCH.  So are the members allowed to speak without backlash of that kind?  If you aren't able to contribute, for whatever reason, does that negate your right to say ANYTHING at all?  

I'm not saying that you did any of this.  It's just my view.  


on 08/20/04 at 01:19:59, Donna_D. wrote:
...I just want everyone to know that all is not rotten in Denmark in fact things are working GREAT.

Faithfully Yours,

Donna D.


My Shakespeare comment went a long way.  I said there was something amiss, not that aLL of Denmark was rotten.  There is a difference.

I really think there's an opportunity to start anew... not from scratch, but anew.  I think you will be contagious.  

I mean in a good way sis.  You got me to post didn't you.  Now I'm gonna get flamed I know it, but its your fault.

Love ya.
Title: Re: I have something to say...and I am going to sa
Post by Bob P on Aug 20th, 2004, 10:53am
A leader observant enough and forceful enough to recognize bullshit and cut it off at the knees.

We have two entities and two different groups of people.  CH.com message board people, many of whom are here simply for fun and joking, and OUCH people trying to get the organization on track.  Often when OUCH is looking for officers or Board Members the most popular people from the .com message board are picked (because they are nice and everyone likes them).  Those people often bring their .com personality to OUCH and it just doesn't help the org.

So my take is along the lines of Don's.  Businesslike people running the org.  Make the decisions and go with them.  Don't get too wrapped up in trying to please everyone, it just ain't gonna happen.
Title: Re: I have something to say...and I am going to sa
Post by JDH on Aug 20th, 2004, 11:11am

on 08/20/04 at 07:17:38, Jeepgun wrote:
Ditto Gator and Pubgirl's comments. I offered repeatedly to do mailings, drop off packets to doctors' offices, and asked for a media kit to possibly send to newspapers. I got nothing and no one offered to help, no one asked for my address to which they could send a packet once it was together, NOTHING. "Please help! Please help! Pick up an oar!" Bullshit. It's more like, "Please come participate in our shit-flinging, mud-slinging, and interminably boorish arguing and in-fighting.
Fuck that. I'm fed up.


BTDT as well Frank....and NO replies  [smiley=huh.gif]

Kinda makes you think, what's the point?


on 08/20/04 at 03:24:23, Gator wrote:
Isn't it sad to think we may be our own weakest link?  


It sure is  :(

Jim
Title: Re: I have something to say...and I am going to sa
Post by Kevin_M on Aug 20th, 2004, 11:12am

on 08/20/04 at 01:19:59, Donna_D. wrote:
What has been the MAIN time consuming task for the officers and Board of Director members during that time?

Could it be, Replacing people who QUIT?


I guess that brings to mind a question.  A lot of good people have worked for OUCH.  Presently, there are people who have stuck doing a good job.  Why is it a lot of good people have quit.  I certainly don't think it is because they have lost interest in helping sufferers or trying to do something about CH.  
 I believe those who have quit have tried.  Perhaps a question of progress or a weighing of turmoil versus gains.  Without seeing some smooth progress or gains for all the effort and tolerance attempted, it can become a question of time, tolerance and effort versus expectations.  Tolerances get stretched, and some are willing to do this, but not for the purpose of having to give more and more of it.

The boat is still being kept afloat.  The best to the present and future OUCH, I hope things can happen again.  I know there are willing persons putting in time and this will get better.  I simply wouldn't wish to put blame on the people who have quit.  Something has been apparently putting the thought of quitting in their heads.  

OUCH is a difficult and ambitious undertaking.  

Kevin M
Title: Re: I have something to say...and I am going to sa
Post by Kevin_M on Aug 20th, 2004, 11:26am

Quote:
If this is as bad as it gets, I can take it!


Always good to hear your piece from you Boob Bob P  ;;D


Kevin M
Title: Re: I have something to say...and I am going to sa
Post by don on Aug 20th, 2004, 11:27am

Quote:
Working on it...much easier said than done.


Number 1. is the most difficult but becomes much easier after you have assembled number 2.
Title: Re: I have something to say...and I am going to sa
Post by Kevin_M on Aug 20th, 2004, 11:52am

on 08/20/04 at 09:54:32, don wrote:
1. BOD comprised of professionals outside of the membership

2. Officers who are members with experiance operating a 501(c)3

3. A panel of members who represent the entire membership in discussions.


I'm not business oriented but I can see these three points as furthering the cause.  I am just hoping that the missing fourth point is not, and excuse mine for proposing it bluntly, I claim none, people skills.  OUCH, as an organization that people would want to be involved in, would be better than one that has people quitting for hard to specify reasons.  

I'm done.

Kevin M  
Title: Re: I have something to say...and I am going to sa
Post by JDH on Aug 20th, 2004, 11:53am

on 08/20/04 at 10:53:47, Bob P wrote:
Often when OUCH is looking for officers or Board Members the most popular people from the .com message board are picked (because they are nice and everyone likes them).  


So how in the world did you get elected president?  ;;D

Oops, I better shut up or I might be classified as one of those "CH.com message board people, many of whom are here simply for fun and joking"

Jim
Title: Re: I have something to say...and I am going to sa
Post by ozzy on Aug 20th, 2004, 11:54am

on 08/20/04 at 10:53:47, Bob P wrote:
A leader observant enough and forceful enough to recognize bullshit and cut it off at the knees.

We have two entities and two different groups of people.  CH.com message board people, many of whom are here simply for fun and joking, and OUCH people trying to get the organization on track.  Often when OUCH is looking for officers or Board Members the most popular people from the .com message board are picked (because they are nice and everyone likes them).  Those people often bring their .com personality to OUCH and it just doesn't help the org.

So my take is along the lines of Don's.  Businesslike people running the org.  Make the decisions and go with them.  Don't get too wrapped up in trying to please everyone, it just ain't gonna happen.



Well the apocalypse is coming, it's official. i agree wholeheartedly with both Bob and Don and in one post to boot!!!

Much needs to be done with OUCH to become the organization that everyone needs. I believe that much *will* be done and that much can be accomplished.

To Jeep, Gator and others that feel frustrated. Frustration doesn't even begin to describe my feelings. The communication issue is a big one, members questions and efforts need to answered and guided...BUT...I don't think that if you care enough about Understanding Cluster Headaches and easing everyone's collective pain, you can just say "F" it! nobody listen, I'm out of here! That is childish. Perseverance is what is needed. Patience is a virtue. Keep knocking on the door, someone will answer. Be professional, the organization needs professionalism.

And to paraphrase the brits:

OUCH is dead. Long live OUCH!


Ozzy
Title: Re: I have something to say...and I am going to sa
Post by Jeepgun on Aug 20th, 2004, 12:03pm
Ozzy, I haven't quit. I entertained the idea of quitting, but I'm still here. If/when the organization gets its shit together, I'm still willing to help, but yeah, I'm more than a little discouraged. Like Gator, I also attempted several times to garner newspapers' interest in CH. Nobody cares. So now the question is, why should I? Why bother? What is there right now, to give anyone confidence in OUCH? Everyone talks about the need for change, but when it's all said and done, there's a helluva lot more said, than done, and things continue on just the way they are. So again, what is happening right now, to make people believe in OUCH? Like Fox Mulder on "X-Files," "I want to believe."
Title: Re: I have something to say...and I am going to sa
Post by Racer1_NC on Aug 20th, 2004, 12:12pm

on 08/20/04 at 10:53:47, Bob P wrote:
A leader observant enough and forceful enough to recognize bullshit and cut it off at the knees.


Define bullshit. No doubt, your vile and disruptive posts do not fall under your definition.


Quote:
We have two entities and two different groups of people.


Partly correct. We do have two types of people. People that suffer from clusterheadaches and people that support them.


Quote:
Make the decisions and go with them.  Don't get too wrapped up in trying to please everyone, it just ain't gonna happen.


I do hope you keep this statement in the forefront of your thoughts when observing actions taken by the OUCH BOD.

Bill
Title: Re: I have something to say...and I am going to sa
Post by Racer1_NC on Aug 20th, 2004, 12:32pm
I won't quit OUCH. It's that simple. Of course I have no problem if someone chooses to quit. One does what one feels they have to do.

OUCH does have problems. I'm committed to do what I can to fix them.

What I am working on now.....
1) A good friend of mine worked in local TV news for 10 years. I put together a packet of information about CH and OUCH. Using myself as a sufferer and the racing promotion as the local tie in, he's talked to the top rated news anchor in the area about doing a story about CH. There was interest. After the Olympics and the GOP convention in NY are out of the way, we may see a story about CH done on the local news.

2) Because I am experienced in racing promotions, I'm working up a package to present to the promoter of a season ending racing in November that brings in people from all over the eastern part of the country. This should be a TV race. I'm hoping to convince him to allow OUCH to be a "charity cause" in the program and during the tv broadcast.

These 2 projects are by no means a done deal, and I didn't want to bring them up until I had some sort of commitment, but in the interest of showing that people do work behind the scenes for OUCH.....here they are.

Bill
Title: Re: I have something to say...and I am going to sa
Post by john_d on Aug 20th, 2004, 12:42pm

on 08/20/04 at 11:54:50, ozzy wrote:
guided...BUT...I don't think that if you care enough about Understanding Cluster Headaches and easing everyone's collective pain, you can just say "F" it! nobody listen, I'm out of here! That is childish. Perseverance is what is needed. Patience is a virtue. Keep knocking on the door, someone will answer. Be professional, the organization needs professionalism.


I said f' it after trying to get involved on the board, but I was only involved a few months.  The way I had hoped to help is through donations, but I felt like I was throwing my money in a hole.  Ozzy, I have read your posts on the OUCH board and I appreciate your attitude, it makes me hopeful for OUCH.  But for now, I am just going to wait and see.  
 
edit
I just read the OUCH board again, uggh!  I just don't understand how it got like that.  I am going to ponder this a little longer.
Title: Re: I have something to say...and I am going to sa
Post by Bob P on Aug 20th, 2004, 1:52pm
Heck I've been with OUCH for 5 years now.  I frequently get pummeled by the people I've cut off at the knees but it won't phase me.  I'll always work for OUCH.  34 years of cluster pain forbids me to give up.


Quote:
Well the apocalypse is coming, it's official. i agree wholeheartedly with both Bob and Don and in one post to boot!!!

Ozzy,
You own a lot of those traits that I speak about.  Stay close.  Like Mike Storey told that 5 pound rainbow trout he caught the other day, you're a keeper!

~~~~~~~~~~~~~~~~~~~~~~~~

They also should get rid of all those female meegrainers they have running the place.  We didn't have these problems in year 1 and 2, when the boys was running the show!  WDGCH ;)
Title: Re: I have something to say...and I am going to sa
Post by ozzy on Aug 20th, 2004, 3:46pm
Frank,

I'didn't mean to imply that you quit, some others have. Unfortunately, OUCH is in a position that as an organization it must change and prove to the membership that it is different organization and as it name implies, it is organized. To those who choose to wait and see. You'll always be welcomed. To those who choose to be involved right now or continue to be involved...thank you.



Bob, thanks for the kind words. I'm just doing what I think is best for all of us sufferers.


BTW, I will be away all of next week and probably this weekend. I will do my best to check the boards.

Ozzy
Title: Re: I have something to say...and I am going to sa
Post by JDH on Aug 20th, 2004, 4:00pm

on 08/20/04 at 15:46:14, ozzy wrote:
To those who choose to be involved right now or continue to be involved...thank you.


Ozzy


So if a person wants to be involved what can they do and who can they contact that will reply?

Jim
Title: I don't believe that noone wants to know
Post by rumplestiltskin on Aug 20th, 2004, 4:11pm
The Paradoxical Commandments
by Dr. Kent M. Keith


People are illogical, unreasonable, and self-centered.
Love them anyway.

If you do good, people will accuse you of selfish ulterior motives.
Do good anyway.

If you are successful, you win false friends and true enemies.
Succeed anyway.

The good you do today will be forgotten tomorrow.
Do good anyway.

Honesty and frankness make you vulnerable.
Be honest and frank anyway.

The biggest men and women with the biggest ideas can be shot down by the smallest men and women with the smallest minds.
Think big anyway.

People favor underdogs but follow only top dogs.
Fight for a few underdogs anyway.

What you spend years building may be destroyed overnight.
Build anyway.

People really need help but may attack you if you do help them.
Help people anyway.

Give the world the best you have and you'll get kicked in the teeth.
Give the world the best you have anyway.

© Copyright Kent M. Keith 1968, renewed 2001

Walk in the Sunshine Donna
den
Title: Re: I have something to say...and I am going to sa
Post by cootie on Aug 20th, 2004, 5:10pm
I'll stay a member as a way of support but I ain't stickin my feet in that shark pond ! I've checked in a few times........but at least I can walk away with all my fingers and toes. Hey I'm nobody so I only know what I see. And.......as with alot of people I am reacting accordingly. Hats off to all you trying to change things.....your the best ! Nobody's bait Pam
Title: Re: I have something to say...and I am going to sa
Post by john_d on Aug 20th, 2004, 5:11pm

on 08/20/04 at 15:46:14, ozzy wrote:
To those who choose to wait and see. You'll always be welcomed. To those who choose to be involved right now or continue to be involved...thank you.


I am waiting and seeing because I just don't see another option.  What on earth is there to do anyhow?  When I did post on the boards, I felt like I was on a battlefield and I did not know what the battle was about or even who was on taking sides or why.  

Bob P,  Even though you manage to throw in some offensive comments (meegraine women running ouch?) I totally agree that OUCH needs a strong leader.
 
I was at a technical conference the other day and someone promoting a certain standard kept saying how he needed my support.  I told him I believed in his standard, and I wanted to help, I asked 'what could I do?'  He just stared at me looking confused, what he did not think about himself is that there was no substantial infrastructure to really support people who want to help with his cause.  So good intentions were not good enough.  

You are making me feel guilty about not getting more involved, but I don't see what or how I could do anything.  But I will try,  Den's commandments got to me.      

John D.
Title: Re: I have something to say...and I am going to sa
Post by Bob P on Aug 20th, 2004, 5:20pm

Quote:
Bob P,  Even though you manage to throw in some offensive comments (meegraine women running ouch?)
 WDGCH is added mainly for Mel and Mast.  They get a chuckle out of it and it gives them reason to call me a sexist pig.

Den - I think the condensed version is "No good deed goes unpunished"!
Title: Re: I have something to say...and I am going to sa
Post by Jonny on Aug 20th, 2004, 5:57pm

on 08/20/04 at 13:52:11, Bob P wrote:
They also should get rid of all those female meegrainers they have running the place.  We didn't have these problems in year 1 and 2, when the boys was running the show!  WDGCH ;)



http://im1.shutterfly.com/procserv/47b3d726b3127cce8e522b4ee30d0000001610

.........................jonny ;;D
Title: Re: I have something to say...and I am going to sa
Post by john_d on Aug 20th, 2004, 6:07pm

on 08/20/04 at 17:20:29, Bob P wrote:
 WDGCH is added mainly for Mel and Mast.  They get a chuckle out of it and it gives them reason to call me a sexist pig.

Den - I think the condensed version is "No good deed goes unpunished"!


ohhh. if just figured it out, WDGCH - Women Do Get Cluster Headaches, thanks.
Title: Re: I have something to say...and I am going to sa
Post by ckelly181 on Aug 20th, 2004, 6:18pm

on 08/20/04 at 16:00:45, JDH wrote:
So if a person wants to be involved what can they do and who can they contact that will reply?

Jim



Well? How many times does this have to be asked?
Title: Re: I have something to say...and I am going to sa
Post by Prense on Aug 20th, 2004, 6:26pm

on 08/20/04 at 18:07:52, john_d wrote:
ohhh. if just figured it out, WDGCH - Women Do Get Cluster Headaches, thanks.


Women don't get cluster headaches...

;;D
Title: Re: I have something to say...and I am going to sa
Post by Bob P on Aug 20th, 2004, 6:30pm
The asking should be done at the OUCH site.  If done there, one would see the response that they hope to have some "projects" for people to help with after this weekends meeting.
Title: Re: I have something to say...and I am going to sa
Post by pubgirl on Aug 20th, 2004, 6:30pm
Women get them, but they don't whine about it ;;D


Wendy (who never whines like the big girl's blouse girly-men)
Title: Re: I have something to say...and I am going to sa
Post by Prense on Aug 20th, 2004, 6:30pm

on 08/20/04 at 18:30:10, pubgirl wrote:
Women get them, but they don't whine about it ;;D


Wendy (who never whines like the big girl's blouse girly-men)


::)
Title: Re: I have something to say...and I am going to sa
Post by Mark C on Aug 20th, 2004, 6:50pm
From the OUCH general board....

Click Here (http://www.clusterheadaches.org/members/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1093008070)


on 08/20/04 at 10:09:48, Mark C wrote:
Job posting are coming.....SOON.....we (The BoD) have another meeting Saturday.....here it comes!

Thanks Juvy....

In Loving Service!

Mark



We (The Board) have been very busy in dealing with the changes to the service structure and more changes are in the works. Part of what is going on is an audit of current committees (from here forth called teams) and see where consolidation and elimination may be beneficial to the Organization. A by-product of this audit will be a more clear idea of just what needs to be done and then solicit bids on each job position that needs to be filled. Keep your eyes on the OUCH board and I will also attempt to cross post (with DJ's permission) when a position is available and what the responsibilities for that position are.

I am excited about the chance to increase the OUCH staff to a suitable level in order to complete our assigned tasks.

The OUCH BoD, according to the current by-laws must meet at 4 times a year. We have been and will be meeting every two weeks for the duration of the current workload. Melissa has been very dilligent in having the minutes posted ASAP after each meeting.

I encourage you to go to the OUCH board and read....the tone has changed, good people are working their butts off not only for no compensation but in many cases even paying for the thankless job we do....and we are working hard! Convention totals are in, the new Bod members will be voted on Saturday night and we are in close communication with each other.

Believe me, we (The BoD) are all TOO aware of what is going on and we look forward to moving OUCH forward. It is a business and we intend on running it as such, after all, is that not why we are here?

Look for a more detailed post from me as soon as possible after tomorrows meeting. I feel as OUCH VP it is time for me to speak up and quell many rumors and try give the membership in general a better overview of what is REALLY going on with OUCH both now and in the future.

Things are looking up!

In Loving Service,
Mark Cox  O.U.C.H.  V.P.
Title: Re: I have something to say...and I am going to sa
Post by Bob P on Aug 20th, 2004, 7:01pm

Quote:
(from here forth called teams)

Bravo!!!!!
Title: Re: I have something to say...and I am going to sa
Post by john_d on Aug 20th, 2004, 7:17pm
very encouraging news, thanks
Title: Re: I have something to say...and I am going to sa
Post by Jonny on Aug 20th, 2004, 7:47pm
Bring back the membership fee, damn it!!

At one time I had paid for half the membership and then it went free, now that Im a life time member.....IM FREE.....LOL ;;D

..................................jonny
Title: Re: I have something to say...and I am going to sa
Post by pubgirl on Aug 20th, 2004, 7:51pm
Seconded!
Would give loads more scope for action for the BOT (mind you also loads more scope for allegations as well :() and discourage people joining for the sake of it when they have no interest in CH.

Surely this could be done, and waived behind the scenes for people who genuinely can't afford it.

W
Title: Re: I have something to say...and I am going to sa
Post by john_d on Aug 20th, 2004, 7:52pm
membership fee?  ding!  that's an awesome idea.  :)
Title: Re: I have something to say...and I am going to sa
Post by Mark C on Aug 20th, 2004, 8:20pm
Membership fee has been passed here while back...I do not have it right in front of me....$12 bucks a year..........
It's in the OUCH minutes.

In Loving Service,
Mark
Title: Re: I have something to say...and I am going to sa
Post by JDH on Aug 20th, 2004, 11:31pm
Thanks for the responses Mark and Bob.

Jim
Title: Re: I have something to say...and I am going to sa
Post by Charlie on Aug 21st, 2004, 4:39am

Quote:
Bring back the membership fee, damn it!!


Might be a good idea kids.

Charlie
Title: Re: I have something to say...and I am going to sa
Post by Ree on Aug 21st, 2004, 12:45pm

on 08/20/04 at 17:10:09, cootie wrote:
I'll stay a member as a way of support but I ain't stickin my feet in that shark pond ! I've checked in a few times........but at least I can walk away with all my fingers and toes. Hey I'm nobody so I only know what I see. And.......as with alot of people I am reacting accordingly. Hats off to all you trying to change things.....your the best ! Nobody's bait Pam

Im wading around in my nicest suit with Cootie here...

and Bob some of us Meegrainers dont get involved with OUCH even though we are seasoned supporters.  I read and I don't like what I've been reading lately... Seems like the once professional looking organization went loco. Too many personalities for my liking.  Even the presidents are allowed to quit when someone hurts their feelings........Death or Impeachment should be the only reason anyone gets to leave once elected........ a year is not a long time to commit.  The whole thing reminds me of highschool... ree
Title: Re: I have something to say...and I am going to sa
Post by Pinkfloyd on Aug 21st, 2004, 2:44pm

on 08/20/04 at 13:52:11, Bob P wrote:
Heck I've been with OUCH for 5 years now.  I frequently get pummeled by the people I've cut off at the knees but it won't phase me.


With all due respect...
History is replete with strong leaders that cut people off at the knees (and sometimes heads) without thought that there is the possibilty that they have been removing from society, the very people that can save it from certain destruction.
When you are a strong leader, and draw a line in the sand, you should be wise enough to know which side of the line, is the correct one.
After drawing this line based upon one's own perceptions of what is best for the whole of society, and after 5 years, society has not progressed, but has regressed, and the landscape is littered with bodies, sans knees, the leader might want to re-evaluate his line drawing abilities.

Yes, no good deed goes unpunished. But, good deeds eventually produce benefits that make the punishment worthwhile. If nothing positive is produced, maybe they weren't good deeds afterall. This isn't to say that these deeds weren't done with all good intention. I believe that everyone has had nothing but the best of intentions. Everyone has had the same destination in mind. Some people are working with incorrect maps. Until you reach the desired destination, there are no guarantees that YOU (that's a collective YOU) are in possession of the only correct map. No matter how sure you are that your map will lead everyone correctly, your's is proven no better than anyone else's until you get there. The only person I know that wandered this long without progress was Moses. I knew Moses and believe me...... ;)

Before you cut off any more knees, I suggest that you be sure he/she isn't the one with the right map.
Yes, I understand you can't all follow different maps, but it does no good to throw away the maps you "think" are wrong. You may need them later to lead you to water.

A strong leader is but one quality needed to be a good and successful leader. History has shown that strength without wisdom produces very bad results.

PF
Title: Re: I have something to say...and I am going to sa
Post by Jonny on Aug 21st, 2004, 2:59pm
Which leader are we talking about, Pink?

Bob's wearing a kilt today........how bout reaching up under and giving God a tug?......LMAO ;;D

...............................jonny
Title: Re: I have something to say...and I am going to sa
Post by DaveHar on Aug 21st, 2004, 3:59pm
A place on CH.org showing openings and where people are needed is a good start. At least then people can get some answers and if they don't we know where to turn to get those issues taken care of.

I do have one other sugestion, not that it means much of anything, start a hard copy of the news letter to be sent out to members once a quarter.  This would give each and every member something that they could carry to others such as docs, tv groups and whatnot to show what we are.  It also provides information to those that are out of the loop for awhile. Example....Ree pointed out that Leesa and I were out of the loop and she was correct....We had no way of connecting to the internet for several months and we relyed on phone to get any information and even that was very limited. People like BarbG who has been MIA due to computer problems would have benifited greatly from this.

I at one time went up for the BOD but pulled out because I felt I could not devote the time necessary to that job, I also felt that I was to new of a member to hold such a position. I stongly feel that a small team should be set up to start the org of an outside BOD made up of Neuros and GPs and the current BOD be done away with. This alone will remove a very large amount of the BS that currently goes on.

This is just my opnion, you can take it or leave it.

Dave
Title: Re: I have something to say...and I am going to sa
Post by john_d on Aug 21st, 2004, 4:01pm

on 08/21/04 at 14:44:59, Pinkfloyd wrote:
With all due respect...
History is replete with strong leaders that cut people off at the knees (and sometimes heads) without thought that there is the possibilty that they have been removing from society, the very people that can save it from certain destruction.
When you are a strong leader, and draw a line in the sand, you should be wise enough to know which side of the line, is the correct one.
After drawing this line based upon one's own perceptions of what is best for the whole of society, and after 5 years, society has not progressed, but has regressed, and the landscape is littered with bodies, sans knees, the leader might want to re-evaluate his line drawing abilities.

Yes, no good deed goes unpunished. But, good deeds eventually produce benefits that make the punishment worthwhile. If nothing positive is produced, maybe they weren't good deeds afterall. This isn't to say that these deeds weren't done with all good intention. I believe that everyone has had nothing but the best of intentions. Everyone has had the same destination in mind. Some people are working with incorrect maps. Until you reach the desired destination, there are no guarantees that YOU (that's a collective YOU) are in possession of the only correct map. No matter how sure you are that your map will lead everyone correctly, your's is proven no better than anyone else's until you get there. The only person I know that wandered this long without progress was Moses. I knew Moses and believe me...... ;)

Before you cut off any more knees, I suggest that you be sure he/she isn't the one with the right map.
Yes, I understand you can't all follow different maps, but it does no good to throw away the maps you "think" are wrong. You may need them later to lead you to water.

A strong leader is but one quality needed to be a good and successful leader. History has shown that strength without wisdom produces very bad results.

PF


::) why don't you just say you want someone who will support your 'shroom cure, like you are actually thinking.
Title: Re: I have something to say...and I am going to sa
Post by Pinkfloyd on Aug 21st, 2004, 4:11pm

on 08/21/04 at 14:59:40, Jonny wrote:
Which leader are we talking about, Pink?
...............................jonny


Well, I wasn't talking about Bush. I imagine the person/people it's directed to know who I was talking about.
I think it's good advice for all leaders but then since it's my advice, of course I think it's good.  ;;D


on 08/21/04 at 14:59:40, Jonny wrote:
Bob's wearing a kilt today........how bout reaching up under and giving God a tug?......LMAO ;;D
...............................jonny


hmmm...after much probing, I have given up the search. I must have the wrong map. Couldn't find anything, sorry. ;;D

PF
Title: Re: I have something to say...and I am going to sa
Post by Pinkfloyd on Aug 21st, 2004, 4:30pm

on 08/21/04 at 16:01:54, john_d wrote:
::) why don't you just say you want someone who will support your 'shroom cure, like you are actually thinking.


Well, let me think.
Because that really never even entered my mind while I was writing that. It really has nothing to do with the problems I was addressing.

It just occurred to me (as I tried to think of why you thought that) that you might have thought that I was thinking about MAPS when I wrote "maps" but if you did, you're giving me too much credit. You may have proved that when people read between the lines, they sometimes misinterpret the message. That happens to many of my posts because I am adept at using more words than are usually needed. (just as in this post lol)
I know people keep referring to OUCH UK but in that sense, I would never have written that about them, and they as an org, don't support psilocybin any more or less than OUCH US.
That and the fact that OUCH US has had and still may have, leaders that support psilocybin.

When I talk about psilocybin research support, it's much more obvious. ;;D

PF
Title: Re: I have something to say...and I am going to sa
Post by john_d on Aug 21st, 2004, 4:48pm
...or it could be because you call yourself 'pinkfloyd' and the only times I see you post are regarding 'psilocybin research'.  

It was harmless, just confusing.

edit
I thought better of some content
Title: Re: I have something to say...and I am going to sa
Post by Pinkfloyd on Aug 21st, 2004, 5:58pm

on 08/21/04 at 16:48:02, john_d wrote:
...or it could be because you call yourself 'pinkfloyd' and the only times I see you post are regarding 'psilocybin research'.  

It was harmless, just confusing.

edit
I thought better of some content


Just checked and of the 46 posts before this thread, there were 23 posts that had anything to do with psilocybin (including a couple of bumps) and 23 that had nothing to do with psilocybin.

No problems. I just wanted to make sure my record (as in vinyl platter) wasn't broken.

take care
PF
(BTW, I've been reading and posting here years before I ever even heard about psilocybin)
Title: Re: I have something to say...and I am going to sa
Post by Melissa on Aug 21st, 2004, 6:18pm

on 08/21/04 at 15:59:05, DaveHar wrote:
I stongly feel that a small team should be set up to start the org of an outside BOD made up of Neuros and GPs and the current BOD be done away with. This alone will remove a very large amount of the BS that currently goes on.

Wow does THIS sound familiar.....  Wonder where in the world anyone would get such an idea from?  I am beginning to hear it more often from a few members, but it's all been in the past week or so that it's been mentioned.  Wonder why...

Melissa
Title: Re: I have something to say...and I am going to sa
Post by Jonny on Aug 21st, 2004, 6:19pm
Pink,

You should really get over yourself, it makes you look foolish dude

..................................jonny
Title: Re: I have something to say...and I am going to sa
Post by pubgirl on Aug 21st, 2004, 6:33pm

on 08/21/04 at 15:59:05, DaveHar wrote:
A place on CH.org showing openings and where people are needed is a good start. At least then people can get some answers and if they don't we know where to turn to get those issues taken care of.

I do have one other sugestion, not that it means much of anything, start a hard copy of the news letter to be sent out to members once a quarter.  This would give each and every member something that they could carry to others such as docs, tv groups and whatnot to show what we are.  It also provides information to those that are out of the loop for awhile. Example....Ree pointed out that Leesa and I were out of the loop and she was correct....We had no way of connecting to the internet for several months and we relyed on phone to get any information and even that was very limited. People like BarbG who has been MIA due to computer problems would have benifited greatly from this.

I at one time went up for the BOD but pulled out because I felt I could not devote the time necessary to that job, I also felt that I was to new of a member to hold such a position. I stongly feel that a small team should be set up to start the org of an outside BOD made up of Neuros and GPs and the current BOD be done away with. This alone will remove a very large amount of the BS that currently goes on.

This is just my opnion, you can take it or leave it.

Dave



Dave

I think you make some fair points here. The reason we have a newsletter and a Helpline is that we recognise that quite a proportion of CH sufferers are older and over here, quite often don't even have a computer let alone Internet access.
These are often the most isolated sufferers of the lot and need some point of contact.

As for a BOD made up of medical professionals. That sounds very odd to me. Why would they want to give their limited time?
My thought would be that you have an independant, non CH Chairman who chairs meetings and controls official activities and behaviour in a more businesslike or even, dare I say it, ruthless manner, and doesn't get drawn into politics or in-fighting or bullshit.
Bet there are quite a few retired directors of companies or even charities who would take up the job (you'd probably have to pay them though)

Just a thought.

Wendy
Title: Re: I have something to say...and I am going to sa
Post by don on Aug 21st, 2004, 6:42pm
In order to be a valid 501(c)3 you need to have a BOD. Preferably one that minds their own business and only acts in an administrative capacity.
Title: Re: I have something to say...and I am going to sa
Post by john_d on Aug 21st, 2004, 9:40pm

on 08/21/04 at 17:58:55, Pinkfloyd wrote:
Just checked and of the 46 posts before this thread, there were 23 posts that had anything to do with psilocybin (including a couple of bumps) and 23 that had nothing to do with psilocybin.

No problems. I just wanted to make sure my record (as in vinyl platter) wasn't broken.

take care
PF
(BTW, I've been reading and posting here years before I ever even heard about psilocybin)


lol, that's cool pinkfloyd, no problems.
Title: Re: I have something to say...and I am going to sa
Post by DaveHar on Aug 21st, 2004, 11:29pm

on 08/21/04 at 18:18:28, Melissa wrote:
Wow does THIS sound familiar.....  Wonder where in the world anyone would get such an idea from?  I am beginning to hear it more often from a few members, but it's all been in the past week or so that it's been mentioned.  Wonder why...

Melissa


Maybe your hearing this because it is something that needs to be looked at very strongly. I know right now I am the most unpopular person on this board and I can live with that. But what I can not live with is an org that is as stagnet as OUCH is.  
No, I do not post every day, I am not the most popular, HELL, I am probably the smallest voice on this board or on the board of OUCH. That is all good and fine as well. I do not feel that I have to be any of those things and nor do I want to be anything more then a small voice that works in the back ground. But one thing is for sure, I have never nor will I ever be called a follower or someone who backed down from anyone or any thing.

Drag me through what ever you want,GO FOR IT, your not going to break me. I did not make the statment because others have. I made it because just maybe, just maybe if it is said enough then it will wake enough people up to see that it is somthing that has to be done for this ORG to work and for the BS to stop.

I've been fed enough BS in my lifetime to know that I'm sick of it and I'm just not going to eat it any more.

Like I said, I may not be liked, I may be the most unpopular right now, Hell for all I know I'm on the virge of being ousted from OUCH and here. IF so, DJ get it done and over with. But, I've said my peace and I have always been open with everyone and I have never played it any way but down the middle.

Dave
Title: Re: I have something to say...and I am going to sa
Post by Marc on Aug 21st, 2004, 11:40pm
Round and round and round we go
Title: Re: I have something to say...and I am going to sa
Post by Jeepgun on Aug 23rd, 2004, 8:53am
Very well-stated. Nice post.

-Frank


on 08/21/04 at 14:44:59, Pinkfloyd wrote:
With all due respect...
History is replete with strong leaders that cut people off at the knees (and sometimes heads) without thought that there is the possibilty that they have been removing from society, the very people that can save it from certain destruction.
When you are a strong leader, and draw a line in the sand, you should be wise enough to know which side of the line, is the correct one.
After drawing this line based upon one's own perceptions of what is best for the whole of society, and after 5 years, society has not progressed, but has regressed, and the landscape is littered with bodies, sans knees, the leader might want to re-evaluate his line drawing abilities.

Yes, no good deed goes unpunished. But, good deeds eventually produce benefits that make the punishment worthwhile. If nothing positive is produced, maybe they weren't good deeds afterall. This isn't to say that these deeds weren't done with all good intention. I believe that everyone has had nothing but the best of intentions. Everyone has had the same destination in mind. Some people are working with incorrect maps. Until you reach the desired destination, there are no guarantees that YOU (that's a collective YOU) are in possession of the only correct map. No matter how sure you are that your map will lead everyone correctly, your's is proven no better than anyone else's until you get there. The only person I know that wandered this long without progress was Moses. I knew Moses and believe me...... ;)

Before you cut off any more knees, I suggest that you be sure he/she isn't the one with the right map.
Yes, I understand you can't all follow different maps, but it does no good to throw away the maps you "think" are wrong. You may need them later to lead you to water.

A strong leader is but one quality needed to be a good and successful leader. History has shown that strength without wisdom produces very bad results.

PF
Title: Re: I have something to say...and I am going to sa
Post by pubgirl on Aug 23rd, 2004, 9:11am
Think you should all go over to OUCh and look at Mark's announcement


Wendy


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