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Topic: O.U.C.H. Discussion (Read 1135 times) |
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Azrael
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O.U.C.H. Discussion
« on: Apr 8th, 2005, 9:01am » |
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Okay... I know this thread will prolly make me public enemy #1, but frankly, I think something needs to be done, and I've found my flame resistant britches. I'm starting this thread here for two reasons: To try to stop the argument in the CH.com Gatherings and Fundraisers Section... And try to get some resolution on both sides. My only request is that we at least try to be civil and professional here. Keep the petty bickering to private please, and maybe we'll be able to at least say we tried to fix this problem. If you don't think this is the proper forum to discuss this, I'm starting the same thread here: http://www.clusterheadaches.org/members/cgi-bin/yabb/YaBB.cgi?board=new_ main_board;action=display;num=1112965265
From where I sit, as a member of the CH.com message board, and a member of O.U.C.H. US, I've made some observations. Although these aren't nearly a complete list of noticeable difficulties that the organization is facing at this time, these are the ones that I wish to point out, and welcome everyone else (O.U.C.H. member or not) to respond with their own.
Observation #1:
There are some major trust issues plaguing the organization at this time. The membership is becoming restless with a general perception of being left out and out of the loop. As far as I know, it is very reasonable for the members of any organization (employees, customers, contributors, affiliates, investors, volunteers, etc...) to want information about the general operation of the organization. People want to know that their money/time/effort is being put to good use. If you keep people in the dark too long, they will become disillusioned and leave, as we are currently seeing. No… O.U.C.H. does not have to issue daily reports on their operations, but you should at least try to provide the most recent and up to date information if someone needs it… And yes… I have heard all the talk about how O.U.C.H. is in a sort of transitional period, but that brings me to…
Observation #2:
We all keep hearing about how O.U.C.H. is changing, and this will make it better, but this is not a good excuse for not providing information to the public when requested. In fact, in a time of change, it’s more important than at any other time to provide periodic updates and up to date information. If the proper information is not available in a complete and proper form at the time of request, provide as much up to date information as you can, and explain in a clear and precise manner as to why you are unable to provide the rest of the request and give the requestor an accurate timeframe as to when the information should be available as requested.
Observation #3:
O.U.C.H. representatives many times come across as being defensive, and sometimes out right rude when responding to the public. The O.U.C.H. officers, directors, and volunteers must be made aware that whenever they are conducting business on behalf of the organization, responding to issues concerning the organization, or even just talking about the organization, they are being seen as representatives of O.U.C.H. and every word and action will contribute to the image of the organization as a whole. Everyone in the chain of command is responsible for making sure that all representatives are providing as good of an image as possible, and must lead by example. Derogatory comments about the current or prior leadership of the organization, members of the organization, or the public will only breed hostility towards the organization and it’s leaders. No matter how offended one may become over someone’s comment, as a representative of O.U.C.H. you must not let it degrade your professionalism.
Observation #4:
Members of O.U.C.H. must understand that there may be decisions, changes, or actions that you may not agree with in the organization. You must not let these things affect your effort to make this organization better. If you don’t like it, discuss it with the leadership… If they won’t listen, discuss it with other members. If enough members agree with your side, eventually you can change things. Leaving the organization won’t solve things, and dissolving the organization and starting from scratch will only fix things temporarily if at all. The only way to make changes is to get involved. Run for a BOD position… Support someone that’s running for a BOD position that shares your views… VOTE… Of course, as a last resort, if enough members agree that the leadership still does not correctly represent their views and desires for this organization, perhaps the only thing left to do is create your own organization that may be able to fulfill the mission those members wish to pursue, but this should only be considered when all other options have been tried… Creating a new organization with similar interests and goals to the existing organization will only cause unnecessary competition and conflict.
Damn… I can be long winded at times. Of course… Y’all are free to agree, disagree, or ignore all that I’ve said here… It makes no matter here nor there. As I’ve stated before, I only wish to do my part to try to get things resolved, and make sure that we continue to move forward. Please… Let’s make this thread a place for open, honest, and beneficial conversation between all parties… Old timer, newbie, BOD member and non-member alike.
PFDAN………………………………… Drk^Angel
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| « Last Edit: Apr 8th, 2005, 9:05am by Azrael » |
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nani
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Re: O.U.C.H. Discussion
« Reply #1 on: Apr 8th, 2005, 9:57am » |
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You make some really good points. I would only disagree with one thing:
Quote:| The membership is becoming restless with a general perception of being left out and out of the loop. |
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Can we say some of the membership? A few are making a lot of noise...the majority are silent.
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Re: O.U.C.H. Discussion
« Reply #2 on: Apr 8th, 2005, 10:01am » |
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Very well said, Drk. Thank you.
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Bob P
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Re: O.U.C.H. Discussion
« Reply #3 on: Apr 8th, 2005, 10:16am » |
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Quote:Actually I think it's more like the majority have left!
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E-Double
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Re: O.U.C.H. Discussion
« Reply #4 on: Apr 8th, 2005, 10:57am » |
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I have to be honest I do not understand where this has come from because.....
I do not know the true history between everyone so I am very much indifferent....I would like that changed.
I have extreme passion for helping others. It is not only my career but my life.
What I do "see" is that everyone makes extremely valid points regardless of what side of the debate they are on.
The problem is not what is said or asked but how!!!
We live in such a punitive society that is so defensive and as opposed to thanking previous workers for what was done we give hell for what was done wrong.....
Always start with the positive and then suggest how one can expand on or change if necessary.....
On the flip side when people only hear the negative no one listens because they are already preparing for an attack.....
Common courtesies that would go a long way!!!
I am so very thankful as is my wife and family for most everyone on this site (posted on both)!
It has certainly saved my life!
The organizations are developed by people who are seeking relief from the most dastardly pain.......
If this continues on both parts in such an unprofessional manner then no one will ever find true relief nor will the Medical community take it seriously.....
This also may become a place percieved as contemptuous rather than a place of solace....That is sad
Wishing all pain free times and less stress!
Eric
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don
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Quote:| Damn… I can be long winded at times. |
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Christ! I'll say.
Everything you said makes complete sense. Except you might have missed one important point.
Quote:| perhaps the only thing left to do is create your own organization |
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You can also remove the leadership.
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Well gee! Doesn't that make you ask why?
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Lizzie2
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Re: O.U.C.H. Discussion
« Reply #6 on: Apr 8th, 2005, 11:03am » |
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on Apr 8th, 2005, 10:57am, E-Double wrote:IAlways start with the positive and then suggest how one can expand on or change if necessary.....
Eric
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Also wise words Ex2.  I said something similar to a nursing student once, and she was "amazed" by this concept.
I said the key thing to remember is PCP (and no...not the drug!) Praise, Criticism, Praise....
The only way to be an effective teacher, person, what have you - is to always be authoritative. Tell someone something they did well first, then offer constructive (not destructive) criticism, and then once again...remind them of something they are doing well.
Really simple example from my piano life:
"Good job. You played the piece with a great deal of character. One thing I would work on is really drilling the section with a lot of octaves. Try playing them more slowly and taking each beat apart. However, it really sounds like it is coming along!"
Message across...and no hurt feelings. We ALL need to remember this concept.
Lx2
edited cuz sometimes my brain goes dyslexic
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| « Last Edit: Apr 8th, 2005, 11:06am by Lizzie2 » |
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BlueMeanie
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Re: O.U.C.H. Discussion
« Reply #7 on: Apr 8th, 2005, 12:25pm » |
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on Apr 8th, 2005, 11:02am, don wrote:| You can also remove the leadership. |
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The way it looks to me, this whole discussion is about the above comment.
Yes, there where no elections, but what was done is done. If I recall there was no one else stepping up to fill the vacancy. All you're doing is disrupting the whole organization by trying to oust our current leader and board members. I don't understand why you can't just give the new board a chance. If you don't like what they are doing, elect someone else who can do a better job when the November elections come. How many times does personnel changes need to be made ? Nothing is ever gonna get accomplished if positions keep turning around every few months.
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Margi
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Re: O.U.C.H. Discussion
« Reply #8 on: Apr 8th, 2005, 12:42pm » |
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on Apr 8th, 2005, 12:25pm, BlueMeanie wrote:
All you're doing is disrupting the whole organization by trying to oust our current leader and board members. |
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Honestly, Blue? That certainly isn't my motive for voicing my opinions and asking my questions. My motive is truly one of keeping this administration (ANY administration) accountable for maintaining, growing and perfecting an organization that I helped to create and, as such, have a very parental feeling for and, guess what - I always will feel that way about this OUCH.
I have nothing personal against any one of the officers/directors in place at the moment. Except for two of the directors, I don't personally know any of them. How can I judge them as people? I am not doing that. Yes, I'm judging their actions and words - I'll not argue that - but I have no right to assess their personalities and I never have.
However, when I see behaviour (from representing members of an org that was, and could be again, as nobel as OUCH) as has been demonstrated this past week, hell YEAH I'm gonna bark and cry foul. I feel we ARE giving this administration a chance and, at this point, I feel they are straying from the original vision of OUCH and not living up to the commitment to membership.
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| « Last Edit: Apr 8th, 2005, 12:44pm by Margi » |
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mynm156
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Re: O.U.C.H. Discussion
« Reply #9 on: Apr 8th, 2005, 12:43pm » |
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Good Job
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Tiannia
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Re: O.U.C.H. Discussion
« Reply #10 on: Apr 8th, 2005, 12:44pm » |
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I think that everyone who is (or ever has been) a part of the BoD or an active member of OUCH has a great desire to help. They want to make things change and are so very enthusiastic to make that happen with new ideas and new directions.
The main issue that I see is ---I believe that there is a lot of apathy within the membership. Most people care, but the cause is so buried in turmoil that it is easier to walk away or turn a blind eye (or ear) rather then trying to dig though the crap to get to it. A friend used the term "terminal apathy" regarding OUCH. That is sad that someone who wants to do nothing more then help everyone here, supporter and sufferer alike, would be to the point of just saying forget it. I have stopped caring and it is not worth the fight anymore.
Creating a new organization will not help anyone. It will divide us more then we are and we need to have that unity to be seen within the medical community seriously.
I personally don't have the mental strength to be a member of the BoD. I know myself well enough to know that taking on that responsibility would stretch me too thin and I would end up causing my physical well being to be put at risk. I lurk and read but don't respond. 
From an outsiders prospective, it appears that many of the arguments are not about what is currently being discussed. Much old bad blood is brought up. For anything to grow (company, organization, etc...) You have to let go of what is holding you back. There has to be a conscious break to get rid of the ideas and issues that cause you to be blinded and suffocated. For without fresh ideas and open mindedness the organization will die.
OUCH is stagnant. There has been a damn built of hurt feelings, nasty attitudes, and personal issues that needs to be knocked down so that it can OUCH can start moving again.
There are so many people that want to help. But have been turned away or left to feel like they are not needed. Let those who can and want to help bring in new ideas and stop looking back. Look forward... look at where you want to go. At what you want to accomplish, both short and long term. Set up a path to get you to your short term goals and stop looking over your shoulder to see who is going to start finger pointing and bickering.
If each and every person can consciously say that from X date I will not bring up the past any more. And actually be honest and stick to that, OUCH can really make a difference.
ok I'll get off my soap box. 
PF Wishes Everyone. And thank you to everyone here who has helped me over the past 2 years. You are my family.
-Tia
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Jonny
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Re: O.U.C.H. Discussion
« Reply #11 on: Apr 8th, 2005, 8:24pm » |
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on Apr 8th, 2005, 9:01am, Drk^Angel wrote:| I know this thread will prolly make me public enemy #1, |
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Hell, I just want to kill you for using the word "Prolly"......its not a word 
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| « Last Edit: Apr 8th, 2005, 8:25pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Re: O.U.C.H. Discussion
« Reply #12 on: Apr 8th, 2005, 8:52pm » |
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on Apr 8th, 2005, 8:24pm, Jonny wrote:
Hell, I just want to kill you for using the word "Prolly"......its not a word
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It is down here bro.....
Bill
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Jonny
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Re: O.U.C.H. Discussion
« Reply #13 on: Apr 8th, 2005, 8:58pm » |
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on Apr 8th, 2005, 8:52pm, Racer1_NC wrote:
It is down here bro.....
Bill |
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Fuck this....Im moving to the moon....I cant even spell half this shit.......LOL
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Re: O.U.C.H. Discussion
« Reply #14 on: Apr 8th, 2005, 10:16pm » |
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Prolly ain't a word ?? Worser then worse Pam
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Mr. Happy
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Re: O.U.C.H. Discussion
« Reply #15 on: Apr 8th, 2005, 10:17pm » |
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Kevin_M
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Re: O.U.C.H. Discussion
« Reply #16 on: Apr 8th, 2005, 10:38pm » |
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Whadda you saying Hap, it should be a goat instead?
Well, if you can do it, da goat's name wasn't Art.
I'll prolly think about hanging it on the refrigerator anyway.
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| « Last Edit: Apr 8th, 2005, 11:02pm by Kevin_M » |
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Mr. Happy
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Re: O.U.C.H. Discussion
« Reply #17 on: Apr 10th, 2005, 12:59am » |
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I'm surprised we can find anybody to fill half the OUCH slots. It's like painting a bullseye on your forehead and rectum. You'll never pay me enough to put up with this kind of crap.
The folks in charge can be voted out sometime in the future if you don't like their style. Until then, they run the show until replaced....if you can find enough people to actually run for a gaddamned election.
I haven't seen one fucking positive point come from any of this.
Not one.
RJ
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don
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Re: O.U.C.H. Discussion
« Reply #18 on: Apr 10th, 2005, 11:03am » |
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Quote:| I haven't seen one fucking positive point come from any of this. |
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Seems to have annoyed you a little.
That must be worth sumpin.
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BarbaraD
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Re: O.U.C.H. Discussion
« Reply #19 on: Apr 10th, 2005, 4:01pm » |
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Looks to me like the "members" are asking questions that are not being answered to their satisfaction. Some of the BOD are giving wiseass answers instead of "professional" ones.
Non profits are open to the public so why not to the members? No one has accused anyone of wrong doing - just asking what has/is being done.
The minority asking questions are the ones who "started" OUCH and know what needs to be asked. Is this so wrong? We've been chastised for "screwing things up." Well maybe we didn't do everything according to Hoyle, but we did the best we could. Yes, some things need to be changed, but they need to be changed with members input into how we want OUR organization to run - not be dictated to.
Someone asked that a donation be made to Dr. Goadsby for his research. That was given a resounding "no". Dr. Goadsby has been our hope since I can remember (way since before OUCH was even formed). His research is very important to CH, but he needs funds to continue it. In the past that was always a goal of OUCH - to raise enough money so we could give some to him to HELP us. He's trying to find the CAUSE of our disease.
Anyone who's ever studied History knows that the past is always important to the future. The "wrong" things plaguing OUCH right now are not that monumental that they can't be corrected.
Right now (as one "old timer" put it) it's like watching our baby play on the freeway and not being able to do a damn thing about it. We can only hope the cars swerve and not hit him.
BD
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Cathi04
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Re: O.U.C.H. Discussion
« Reply #20 on: Apr 19th, 2005, 11:15am » |
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OMG!!!! The more things change around here, the more they stay the same!!!!!!!!!!!!!!
Why would ANYONE WANT to be on the BOD of OUCH!????
In the time I have been here, this uprising -this public flogging occurs on a regular basis!!!!!!!!!!!! It's ridiculous, if you ask me......put someone in a leadership position..and let em do their thing.........People havent been happy with-what?? the last 4 BODs??????????
Lead, follow or get out of the way...OUCH is needed.......
Cathi
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don
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Re: O.U.C.H. Discussion
« Reply #21 on: Apr 19th, 2005, 11:21am » |
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Quote:| .People havent been happy with-what?? the last 4 BODs?????????? |
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The OUCH BOD should be nothing more than a body of people to fullfill the IRS requirements.
Let the officers take the cue from membership and make the decisions.
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Bob P
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Re: O.U.C.H. Discussion
« Reply #22 on: Apr 19th, 2005, 11:55am » |
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Agree Don.
The BoD should meet once or twice a year to set a direction for the Org. and review progess, adjust as necessary.
Once the direction / goals are set, go back to their real jobs and let the Officers run the show. Officers report back to the BoD at their next meeting.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Jeepgun
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Re: O.U.C.H. Discussion
« Reply #23 on: Apr 19th, 2005, 12:05pm » |
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I, for one, am tired of being painted as a troublemaker simply for asking questions. I've lost at least two people that I considered good friends, the instant they joined the BoD. Someone even had the audacity to remark that I should volunteer, when I have volunteered on numerous occasions, and been flatly ignored. Most recently, I was asked to help out with the OUCH newsletter, and I replied that I would be more than happy to write articles, assist with editing, proofreading, or to help out in any way that I could, short of actually taking over the whole responsibility for the newsletter. Since then, I haven't heard a single word. So the sarcastic and rhetorical remark, "Why don't you volunteer and be a part of the solution?" is a stinging slap in the face. It seems to me that the only source of problems generated that needs solving is OUCH itself. *shrug*
The information that helped me get diagnosed was from CH.com The information on medications was thanks to CH.com The people who have provided support and kindness when I've needed it, have come from CH.com The information on kudzu, which resulted in my most pain-free, shortest, and most bearable cycle ever, was from CH.com
Bottom Line:
CH.com has produced: Kindness, support, communication, and research. Therefore, CH.com receives my donations, and I know that some portion of my donations are going to help keep this site up and running.
Since, no matter what anyone says, and no matter how they say it, the majority of the BoD is determined to paint it in the most negative light, and with the exception of two or three members, seems incapable of being civil or open to any kind of rational dialog, this is my final comment on OUCH. I'm done caring.
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| « Last Edit: Apr 19th, 2005, 12:11pm by Jeepgun » |
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Ree
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Re: O.U.C.H. Discussion
« Reply #24 on: Apr 19th, 2005, 2:21pm » |
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I was told by one person that I couldnt be on the OUCH board because it would be best if I was a sufferer.....I am a supporter...
Supporters are what hold up the Sufferers here.....
I lurk around OUCH and shake my head constantly. NO one gets along.......
Everytime I have pulled out my wallet to contribute I think and place it right back in my pocket..... I can't imagine that it will get better... the best has gone and moved on......
ree (and prolly isnt a word jonny you ARE right)
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