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Topic: I have something to say...and I am going to say it (Read 1528 times) |
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Donna_D.
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I have something to say...and I am going to say it
« on: Aug 20th, 2004, 1:19am » |
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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
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| « Last Edit: Aug 20th, 2004, 2:37am by Donna_D. » |
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no-one
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Re: I have something to say...and I am going to sa
« Reply #1 on: Aug 20th, 2004, 2:47am » |
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BUMP
Thank you DD
Hugs
Bec
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Gator
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Re: I have something to say...and I am going to sa
« Reply #2 on: Aug 20th, 2004, 3:24am » |
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Quote:| Do you have an idea to promote the goals and missions of OUCH? POST IT! |
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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?
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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?
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pubgirl
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Re: I have something to say...and I am going to sa
« Reply #3 on: Aug 20th, 2004, 4:03am » |
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Donna
I posted as well and wasn't even given an answer  .
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
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| « Last Edit: Aug 20th, 2004, 6:11am by pubgirl » |
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Jeepgun
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Re: I have something to say...and I am going to sa
« Reply #4 on: Aug 20th, 2004, 7:17am » |
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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.
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| « Last Edit: Aug 20th, 2004, 7:56am by Jeepgun » |
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alleyoop
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Re: I have something to say...and I am going to sa
« Reply #5 on: Aug 20th, 2004, 8:28am » |
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on Aug 20th, 2004, 4:03am, 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. |
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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
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juvy
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Re: I have something to say...and I am going to sa
« Reply #6 on: Aug 20th, 2004, 9:03am » |
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Good point D,
Now tell me what to do
Honestly, tell me what to do.
April
aka Juvy
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john_d
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Re: I have something to say...and I am going to sa
« Reply #7 on: Aug 20th, 2004, 9:23am » |
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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.
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don
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Re: I have something to say...and I am going to sa
« Reply #8 on: Aug 20th, 2004, 9:54am » |
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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!
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Jeepgun
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Re: I have something to say...and I am going to sa
« Reply #9 on: Aug 20th, 2004, 9:56am » |
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I agree with you, Don.
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Mark C
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Onward through the fog.
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Re: I have something to say...and I am going to sa
« Reply #10 on: Aug 20th, 2004, 9:58am » |
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on Aug 20th, 2004, 9:54am, 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! |
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Working on it...much easier said than done.
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| « Last Edit: Aug 20th, 2004, 9:59am by Mark C » |
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Peppermint
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Re: I have something to say...and I am going to sa
« Reply #11 on: Aug 20th, 2004, 10:10am » |
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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 Aug 20th, 2004, 1:19am, 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. |
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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.
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Bob P
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Re: I have something to say...and I am going to sa
« Reply #12 on: Aug 20th, 2004, 10:53am » |
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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.
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JDH
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Re: I have something to say...and I am going to sa
« Reply #13 on: Aug 20th, 2004, 11:11am » |
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on Aug 20th, 2004, 7:17am, 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.
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BTDT as well Frank....and NO replies
Kinda makes you think, what's the point?
on Aug 20th, 2004, 3:24am, Gator wrote:
Isn't it sad to think we may be our own weakest link? |
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It sure is 
Jim
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Kevin_M
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Re: I have something to say...and I am going to sa
« Reply #14 on: Aug 20th, 2004, 11:12am » |
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on Aug 20th, 2004, 1:19am, 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? |
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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
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Kevin_M
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Re: I have something to say...and I am going to sa
« Reply #15 on: Aug 20th, 2004, 11:26am » |
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Quote:| If this is as bad as it gets, I can take it! |
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Always good to hear your piece from you Boob Bob P 
Kevin M
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don
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Re: I have something to say...and I am going to sa
« Reply #16 on: Aug 20th, 2004, 11:27am » |
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Quote:Working on it...much easier said than done.
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Number 1. is the most difficult but becomes much easier after you have assembled number 2.
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Kevin_M
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Re: I have something to say...and I am going to sa
« Reply #17 on: Aug 20th, 2004, 11:52am » |
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on Aug 20th, 2004, 9:54am, 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. |
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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
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JDH
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Re: I have something to say...and I am going to sa
« Reply #18 on: Aug 20th, 2004, 11:53am » |
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on Aug 20th, 2004, 10:53am, 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). |
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So how in the world did you get elected president?
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
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| « Last Edit: Aug 20th, 2004, 12:25pm by JDH » |
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9-11-01, to remember is to honor.
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ozzy
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Re: I have something to say...and I am going to sa
« Reply #19 on: Aug 20th, 2004, 11:54am » |
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on Aug 20th, 2004, 10:53am, 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. |
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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
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Jeepgun
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Re: I have something to say...and I am going to sa
« Reply #20 on: Aug 20th, 2004, 12:03pm » |
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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."
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Racer1_NC
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Re: I have something to say...and I am going to sa
« Reply #21 on: Aug 20th, 2004, 12:12pm » |
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on Aug 20th, 2004, 10:53am, Bob P wrote:A leader observant enough and forceful enough to recognize bullshit and cut it off at the knees.
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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. |
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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. |
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I do hope you keep this statement in the forefront of your thoughts when observing actions taken by the OUCH BOD.
Bill
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Racer1_NC
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Re: I have something to say...and I am going to sa
« Reply #22 on: Aug 20th, 2004, 12:32pm » |
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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
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"Everybody's Gotta Learn Sometime."
Eventus stultorum magister.
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john_d
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Re: I have something to say...and I am going to sa
« Reply #23 on: Aug 20th, 2004, 12:42pm » |
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on Aug 20th, 2004, 11:54am, 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.
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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.
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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.
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| « Last Edit: Aug 20th, 2004, 1:10pm by john_d » |
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Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
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Re: I have something to say...and I am going to sa
« Reply #24 on: Aug 20th, 2004, 1:52pm » |
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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!!! |
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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!
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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
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| « Last Edit: Aug 20th, 2004, 1:54pm by Bob P » |
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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