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Title: Please answer these questions! Post by Elaine on Mar 7th, 2004, 9:04am Hi All I have a few questions for you all. 1. Do you back O.U.C.H.? Just yes or no 2. If yes What would you like to see happening ? Is there something we can do to get you more involved? 3. If no what can we do to get you to join? If you don't want to post your answers Please email them to me at dirtroadtoheaven@earthlink.net I think O.U.C.H. is very important and I want to know the answers to these questions. If you are new on the board and want information on OUCH please feel free to email me at dirtroadtoheaven@earthlink.net Also click on the yellow tab OUCH website on the side of this screen and go read about it. Thanks Elaine |
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Title: Re: Please answer these questions! Post by Jackie on Mar 7th, 2004, 9:58am YES, we back OUCH 100%. Blake & I are members of OUCH and have been for almost four (4) years. We joined soon after finding ch.com and learned that OUCH and ch.com are tied together but are not the same. We believe strongly in OUCH and the work they are doing. OUCH has come a long way in a relatively short time and I see it growing by leaps and bounds in the very near future because of the efforts of some dedicated people working very hard for all clusterheads. OUCH is on the right trrack!!! As to what I would like to see happen.....I'd like to see more clusterheads, their families and supporters join the ranks. I would like to see more participation. Support is all important....members are important!!!! Folks......if you aren't a member please join now. That in itself is a positive step forward. Jacks 8) |
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Title: Re: Please answer these questions! Post by 357Mag on Mar 7th, 2004, 10:00am on 03/07/04 at 09:04:22, Elaine wrote:
Elaine and O.U.C.H. Officers, BoD and Members, since these questions are posed in the open forum, I shall respond in same. I mean no disrespect to any organization or any one group or individual. I am merely stating my opinion/interpretation of what I have read both here and the O.U.C.H site. I am sure there will be many reasons stated for some or all things being as they are…..but in all sincerity, things being as they are have us at a literal stand still. 1) Yes 2) More delegation – even though membership is low [152], there are only a few handling a multitude of work, assignements, etc. a. stop requiring or asking that an idea be submitted to the BoD for consideration and discussion….start brainstorming and discussion from the mention of the idea…have we lost our ability to think; to dream; to communicate??? An idea does not have to be 1 persons plan submitted to the BoD…let it be born of an intelligent pool of thoughts by all. b. Try this approach…hold a brainstorming week…no idea is a bad idea and {can’t do/won’t work}comments are not allowed. Believe it or not, some of the biggest and richest companies function in just this fashion. Then take these ideas and build on some. c. Listen to the little guys [meaning not Officers & BoD] and the wealth of professionals we have in our family. As an example, I direct you to the discussion on the printing and mass mailing of an OUCH brochure. Listen to the professional on this one, his numbers are correct and 1% is poor ROI. d. If all of the I’s and the T’s must be dotted and crossed, then put someone in charge of getting it done so we may move on. e. There MAY be many IRS and State forms that allow ‘Applied For’ inserted in specific EIN or State ID fields (it holds true in [For Profit] company setup. Get the forms in and move on. f. The items listed above and the ‘apparent to the masses’ lack of action is one major reason for low membership and interaction by clusterheads. I am a persistent sob, and if every clusterhead comes up against the inaction, overlooked ideas/info, or told to present to BoD, do you really think you are ever going to generate enthusiasm and raise membership? g. The rich get richer by ‘seeing’ an opportunity when it presents itself and taking immediate action. There is not time to discuss, or banter opinions over days or weeks. Get organized and take action. I think O.U.C.H., CH.COM, and the clusterhead family and all we represent are very important. For that reason, I most certainly want to see all of the answers, and believe the should be posted here, under this topic when compiled. Respectfully, -dan |
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Title: Re: Please answer these questions! Post by Elaine on Mar 7th, 2004, 10:13am Thanks Jackie and Dan this is just what I am looking for the postive and the negitive. Thes questions are so we can listen to you guys and find a way to deal with things and maybe make it work for all. I am just going to be listening here, and taking notes. I promise these things will be taken into considertion. Each and everyone so post on. You will not be beat up for your opinions. I must know these things to work good for you. |
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Title: Re: Please answer these questions! Post by jonny on Mar 7th, 2004, 12:00pm on 03/07/04 at 10:47:02, 357Mag wrote:
Its the weekend.....Someone please clue the prick in .....LOL ;;D You all know where I stand. ...............................jonny |
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Title: Re: Please answer these questions! Post by ckelly181 on Mar 7th, 2004, 1:12pm on 03/07/04 at 10:47:02, 357Mag wrote:
My OPINION: 1. Since I've joined the board (OUCH - not this board) this last fall it's pretty much been a continuous bicker-fest. I'm not sold on the efficacy of the organization. I believe it's a worthwhile cause and have worked, at least, on the newsletter. 2. I joined the OUCH board, and although I am required to log-in (and have registered), I'm still counted as a guest. I didn't ask for help - I just lurk occasionally. I'm not apathetic - just leery. I work on many boards - some effective and some not-so-much. In my opinion, this one teeters in the later direction. Again - you asked for opinions. I am offering mine. Chris |
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Title: Re: Please answer these questions! Post by jonny on Mar 7th, 2004, 1:26pm on 03/07/04 at 13:12:26, ckelly181 wrote:
The one thing that you forget is that CH.COM is not OUCH.....DUH!!!! Maybe a check at the OUCH boards will clear your head.....Unreal!!!! ..............................jonny |
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Title: Re: Please answer these questions! Post by Jackie on Mar 7th, 2004, 1:55pm We've developed a cluster screening tool. We have speakers lined up for the convention. There is a new study being done on chronics. There is talk of a new study for different dosages for imitrex. The zomig nasal spray trials are almost ready to go live. We have the Grant templates set up and ready to go. We met and had extensive discussions with Glaxo. We have done a sampling for $$ and triptan usage for Glaxo. We have set up the outlines for education sessions. We have set up the affiliation with the NECH and OUCH. We met and had brief discussions with the Pfizer reps. I am building an ongoing cluster library. I have contact information for ACHE and AHS and info to resolve the conflict of information regarding the drip movie. There was discussion regarding being on Oprah. There was discussion on uniformity of chapters and they were particularly pleased with the PANJ set up. The NECH suggested we reinstate dues. We discussed the quality of life survey. There is a CME cd called Migraine Blues with a cluster song/video on it that we have copies of. There was discussion on an epidemiology and prevalance study for cluster headaches. The above information was posted by Cat on the OUCH business board.....looks like some impressive stuff to me.... Jacks 8) |
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Title: Re: Please answer these questions! Post by Elaine on Mar 7th, 2004, 2:03pm The reason I asked these questions is I am sure the BOD and Officers want to know. I don't want anyone beat up for their opinions. I want honest opinions for all answers. We want you all in OUCH and I want to know why your not and if you are there what you feel we need to improve on. I thank you all for your opinions, bad or good. Like I said if you don't want to post here PM me or email me. You elected me now I want to work for you. I can't if you don't tell me what the problems are. Take the time to inform us. |
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Title: Re: Please answer these questions! Post by Jackie on Mar 7th, 2004, 2:26pm Exactly, Elaine.... :) OUCH needs input from both members and nonmembers.....positive or negative. 357Mag put it well......"Brainstorming" Jacks |
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Title: Re: Please answer these questions! Post by catlind on Mar 7th, 2004, 3:00pm Agreed with Jackie and Elaine. I know that OUCH has had some difficulty. There are steps in place and things under way to get things sorted out and organized so that the Organization can operate more efficiently and effectively, and allow for brainstorming. Once certain major tasks are handled, and that should be by the end of next week, then the domino effect should take place and things will fall into place fairly quickly and easily (Murphy and your laws bugger off....). The last thing we want to do is squash member excitement and enthusiasm. We are working hard to improve on things, to allow for OUCH to grow, and we are experiencing some pretty strong growing pains right now. Have faith and patience, and know that there is work being done, a great deal of it, even though you can't see it right now, you will in the very near future. The list that Jackie posted about is all that we can give you right now. Some of that - most of that stuff involves proprietary information (go here for an explanation of proprietary info:http://www.charitychannel.com/article_2633.shtml so that's why there are no details released. I understand when folks are frustrated, it's not easy being on our side of the fence either, knowing what we know, and knowing we can't say anything yet. Please provide us with the input asked, and we will work hard to improve the system. Remember, we all have this affliction, including each of the board of director members, our heads hurt too, and our goal is one in the same. You have charged us with the task of leading the organization to fulfilling those goals. Give us your input, and let us do the jobs you elected us to do. Cat |
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Title: Re: Please answer these questions! Post by BarbaraD on Mar 7th, 2004, 5:12pm Thanks Elaine for asking these questions. As Cat says, there's a lot in the works right now at OUCH. As soon as we clear up a few problem areas, OUCH is going to take off strong. Dan, Brainstorming is good and should be used. I like the idea of a week of Brainstorming to get ideas and no negatives. That's where the best ideas come from. One person has an idea and another improves on it until you have a plan. Great idea.... OUCH is going to need volunteers to "work" not just sit around and wait to see what's going to happen. Right now there IS just a few doing the majority of the work because NO ONE WILL VOLUNTEER to help or they volunteer and then don't do anything. We NEED workers. Hopefully by the end of the week we'll have some of the paperwork jumble straighted out and can get down to some serious work -- then we NEED everyone to join OUCH and go to work.... Hugs BD |
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Title: Re: Please answer these questions! Post by Jackie on Mar 7th, 2004, 6:38pm on 03/07/04 at 17:12:33, BarbaraD wrote:
Barbara, I'm sorry but I have to say this....Elaine was asking if we backed OUCH and what we would like to see happen. She wasn't asking for a lecture or scolding for the members or volunteers. I find comments like the above quote counterproductive. Jackie |
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Title: Re: Please answer these questions! Post by ckelly181 on Mar 7th, 2004, 7:27pm on 03/07/04 at 13:26:48, jonny wrote:
Nice, Jonny, nice. We are asked for our opinion, then give our opinion, then are slammed for giving our opinion. Thanks. I'm not as stupid as you are making me out. Here is how I get to OUCH. On the left side of the screen, I click on OUCH website. That directs me to http://www.clusterheadaches.org/ I have a cookie already because I have previously registered. The pop-up menu asks me for my name and password, which are already in place because I have previously registered. It takes me into the correct realm. When I go under Member's Corner, I choose New Business Board. If I attempt to post, I get the following reply: "To post you must be logged in. If you don't have an account yet, please register." Now what?..........unreal!!!!!! Thanks for your sarcastic reply. You don't know anything about me, yet you feel you have the right to make disparaging remarks about me. THAT'S why I don't care to participate in OUCH activities (at .com OR .org - seen the same stuff there). If you aren't in the "inner circle" you apparently have no right to express an opinion or make any mistakes at all. And, God forbid you make a mistake - you might as well start a flame war; you'd get the same response. Chris |
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Title: Re: Please answer these questions! Post by Elaine on Mar 7th, 2004, 8:01pm Chris, I was trying to figure out what you ment by guest now I know. That is a pain in the butt the way that works. When you become a member you get to go to the members conner and you get a password. You have to also make a profile on the message board like you do here, to post. Once you do that your in but every time you go to the members coner you have to sign in then sign in again on the boards. We all have to do it. Maybe we can figure out how to change that cause it is a lot of hassle. Thanks Elaine |
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Title: Re: Please answer these questions! Post by Kevin_M on Mar 7th, 2004, 8:05pm on 03/07/04 at 10:00:16, 357Mag wrote:
This is one small part of the design for Six Sigma management, which is readable. There are other good points which could be applicable too, which I am familiar with, but this post would be too long. I chose to e-mail Elaine with my remarks, because I am not bright about knowing how to get involved, though I have joined and would like to further things. I am sure Elaine will lead me in the right direction without me posting my stupidity here. Thank you Elaine for bringing it up. I hadn't taken the initiative to pm you earlier about. I'd be happy to have the chance to work with those involved. Thanks for reaching out Elaine because since returning I DO wish there is more I can do to help other CH's. If OUCH is the way to do that then... Answer for #1. I am FOR it. Answer for #2. See happening? Me be more involved. To get me more involved? Let me know. Thank you Elaine in advance. Kevin M |
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Title: Re: Please answer these questions! Post by Not4Hire on Mar 7th, 2004, 8:13pm Elaine: I'm sure you know MY answers to your questions... 357: at least we know where you stand...you have made some excellent points--both HERE (CH.com) and THERE (OUCH)... and believe me we are listening... jonny: ...you have once again cut to the chase: CH.com and OUCH are different.... the distinction is lost on SOME: apparently ckelley181 ....thanks for pointin' it out tho..... Jacks: your post put it "in a nut shell"... ;) chris (ckelley181): it's getting a lot more than irritating to hear about "bickering and in-fighting" when what you see is simply the Right to dis-agree and say so.... this is a public forum: conducted on the Internet... ---and in regard to the OUCH log-in procedure: when the NEW board was put up, I had to do the same dance... and still do if I hadn't *Bookmarked*/*Favorited* the Message Board as opposed to the MAIN OUCH site... Quote:
somebody here smarter than me said: "Get over yerself...." you'll never get jonny off yer case if ya don't.... |
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Title: Re: Please answer these questions! Post by ckelly181 on Mar 7th, 2004, 8:45pm >>jonny: ...you have once again cut to the chase: CH.com and OUCH are different.... the distinction is lost on SOME: apparently ckelley181 Nope - not lost - if you read my post, you'll notice I specifically stated what board I'm referring to. I even went through the log on procedure. Thank you, Elaine for clearing that up. It is confusing. >>chris (ckelley181): it's getting a lot more than irritating to hear about "bickering and in-fighting" when what you see is simply the Right to dis-agree and say so.... this is a public forum: conducted on the Internet... I don't have a problem with disagreement - my job is full of that. Name calling and cutting remarks - that's different. A new person looking in is not going to want to run to the OUCH boards when that is what they see. AGAIN - OPINION...MINE...you can disagree, with me, fine. But I'm not calling you a name, and you don't have to call me a name. If there are a lot of comments about the bickering - and not from just one source - what does that indicate about the organization? As to getting over myself - nope - I have a right to my opinion. You said so, correct? I don't deserve to disparaged...even if the source is the most beloved person on this board. As I said, THAT'S why I don't trust the organization. When someone asks for an opinion on this board, should we all merrily agree? Or, do we risk voicing an opinion? That is part of what makes an organization effective - the freedom to risk without ridicule. It is disheartening that we are asked for an opinion, and then slammed for offering it. But that's all. I'm not going to go on anymore. It's not that big a deal to me. I stated how I feel; this doesn't change it. Chris |
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Title: Re: Please answer these questions! Post by Elaine on Mar 7th, 2004, 9:21pm I am sorry this thread turned out as it has. I work for the members of O.U.C.H. I try to do my best to find out what the problem is but in reading this thread I can see the problems. My email is still open and I promise you I won't beat you up for your opinions. I asked for them! I truely want to see people there and people working together. I am sure sorry if anyones feelings were hurt. |
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Title: Re: Please answer these questions! Post by cootie on Mar 7th, 2004, 10:13pm YES............I'll leave it at that............."good job" to you guys that work so hard for it all !! I'm Brad's eyes and ears on here cuz he doesn't have time to get on the MB......so I guess I am content to be a follow'r. Pam that occationally enjoys jokes and useless posts |
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Title: Re: Please answer these questions! Post by bobkip on Mar 7th, 2004, 10:33pm #1 Of course I do. #2 Increased membership. That should be one of the first things dealt with if we get a brainstorming session going. Wish I had some ideas but right now my brain is mush. Kip |
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Title: Re: Please answer these questions! Post by TxBasslady on Mar 7th, 2004, 11:56pm Yes, I am definitely a backer of OUCH. Need to boost the membership. My thinking is that from the birth of Chapters.....we can contact sufferers and get them in the Chapters....thus boosting the overall membership #'s. I also think we need to get some auctions rolling. I know the BoD has been very busy, but like I told you in Dallas, I will happily help you on the Fundraising Committee. Already checking out some things to auction. ;;D I veered a bit on what you wanted for answers....sorry. Love ya, Lady E !! Jean |
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Title: Re: Please answer these questions! Post by Mastifflvr28 on Mar 8th, 2004, 12:17am Tex...I'm just waiting on some promised auctions. And Ckelly...I knew what you meant the FIRST time you posted...you know these 2 sites are seperate, thanks for your opinion. My answers: Yes I would like to see members get on the business board and get involved and let us know what they want. We have LOTS of members...but only about 140 that are actually on the business board and only a handful or so that play with us there :) Mast |
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Title: Re: Please answer these questions! Post by Callico_Kid on Mar 8th, 2004, 2:37am Elaine, 1. Yes! 2. While I am a member I'm afraid I am rather inactive. Unfortunately at this time I hardly have time to visit this site, and most of the time I only give these posts a cursory perusal. I am very grateful for the work you folks are doing, and know there is a lot more behind the scenes that is being done than we know about. I would not be opposed to reinstating dues if necessary in order to help raise funds. Hope this helps. Jerry |
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Title: Re: Please answer these questions! Post by pubgirl on Mar 8th, 2004, 5:22am Elaine It's a cliche I know, but it is a thankless job being an official in any organisation with members. You work your butt off, and then people kick it :( So THANK YOU TO EVERYONE IN ALL THE OUCHES AND ALL THE OTHER ORGANISATIONS SUCH AS CLUSTERBUSTERS WHO WORK ALL OVER THE WORLD TO HELP CLUSTER SUFFERERS EVERYWHERE. We'd all still be taking drugs that don't work and make our extremities turn black and fall off it it wasn't for all your efforts over the years. Wendy (oh and in answer to what you actually asked: yes, I back OUCH AND ch.com and yes, I put what money I can where my mouth is as I can't help much in other ways over here, and I don't know what you should be doing apart from the number one for me is education of the professionals who are supposed to know how to treat us and don't e.g. the mailing leaflet that OUCh has been talking about) |
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Title: Re: Please answer these questions! Post by BarbaraD on Mar 8th, 2004, 7:15am Sorry if I put anyone's nose out of joint. For the life of me I just can't see why EVERYONE wouldn't join OUCH and work toward our common goal of FINDING A CURE FOR THESE HEADACHES. One of the biggest problems we have that I see is communications. We talk over the internet and sometimes things are taken out of contex or someone takes offense at something that's said (maybe in jest and maybe said in a way that was misunderstood). That's why chapter formation is so important - we can communicate one to one and get to KNOW each other. I can assure everyone that OUCH has a dedicated BOD and every one of them is working day and night right now to do what the members want done. Ideas are welcome and I wish all 1400 members who are on the roll would come over to the OUCH business board and say what you think should be done. E-mail your officers and directors and let them know your wishes and thoughts. As I said before, I just can't understand why everyone with ch wouldn't want to join OUCH and help find a solution. Hugs BD |
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Title: Re: Please answer these questions! Post by Donna H. on Mar 8th, 2004, 10:29am This is a great thread, Elaine......thanks. And thanks to those who answer the questions. We all want to do what we can to make OUCH's membership grow. We are a unique organization who has finally made contact in the right places. The bigger our membership number is, the more attractive we are as it proves that clusterheads do exist in big numbers. We need this POWER in numbers to make an impression on whom ever we talk to....today and tomorrow and the tomorrow after that. I have a son who surely inherited his clusterheadaches from me. If we don't see a cure today, what about your kids tomorrow? I'll do anything in my power to prevent (if I can) my children and grandchildren from suffering like this. Sure, it's a very small number (or is it ?) of our children who inherit ch, but don't we all hate it when one of these kids show up on ch.com? Your feelings about joining or not joining are very important to all of us. Again, Thanks to Elaine for putting it out front here. |
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Title: Re: Please answer these questions! Post by Bob P on Mar 8th, 2004, 11:04am I have an idea, let's charge the people some money to be a member, that ought to bring 'em runnin'. Sorry Elaine, just saw the opening and had to take it. 1.) Yes. 2.) I think OUCH is doing just great. Lots of stuff in the works. Nothing you can do that would involve me more. Keep up the good work OUCH. As for log-ins; if you want a name to appear with a post on a message board or a chat room to know who is saying what, you have to log in and tell it who you are. It's just a necessity with these programs. You could eliminate the business board log in but you then have to enter your name on every post. Log ins are the lesser of two evils I guess. |
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Title: Re: Please answer these questions! Post by Elaine on Mar 8th, 2004, 11:25am LOL Bob P its ok ! I would have wrote the very same thing you did ;) People wonder how come I like you. I am a gluten for punishement I guess :-) |
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Title: Re: Please answer these questions! Post by Tiannia on Mar 8th, 2004, 12:20pm 1. Do you back O.U.C.H.? Just yes or no - Yes. I believe that it is a cause that needs our support. 2. If yes What would you like to see happening ? Is there something we can do to get you more involved? I have to agree with Chriss that the few times that I actually went over and read the OUCH boards I saw a lot of bickering. Did not make me want to go back. I have to be honest. That while I would like to do more to help. That I really dont have the time. I know that that is extremely selfish. But it is honest. I give my time here in support of those that I can offer it. But with two little kids, a full time + job, and potentially chronic CH, I really have little time to volunteer. There have been so many things in my life that have gone my the wayside because of my family and the time that I give to them. I gave up my career as a couselor because of the time that it required me to be away from home, just as an example. These HA take time away from them and I really hate that. I do my best to make their lives as normal as possible and try to make sure that they dont have to think about these HA all of the time, even if I do. 3. If no what can we do to get you to join? not applicable |
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Title: Re: Please answer these questions! Post by aprilbee on Mar 8th, 2004, 12:28pm 1. yes 2. seems to be on the right track, definately could use publicity....keep up the good work, I am as involved as I can be, I would love to be able to do more, but its just not in the cards right now, so I will give money when I have it and hope that it helps. |
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Title: Re: Please answer these questions! Post by bubu on Mar 8th, 2004, 12:57pm i joined ouch last week and now what? this web site was my initial contact and now i dont know whats up with ouch please inform |
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Title: Re: Please answer these questions! Post by sherryberry on Mar 8th, 2004, 4:41pm I am no longer a member of OUCH... but I do back the idea... My leaving, had to do with politics... I know that at a certain level, politics must be introduced... but, it seems to me that too much politics was slam dunked down OUCH's throat a much too early a phase and at a much lower level than it should have been. I believe that OUCH is a good an helpful organization as long as "business and politics" do not strangle it to death. In my opinion, due to the fact that clusterheadaches will NEVER be a number one concern in the medical community, since, one, it is not fatal and two, it is fairly rare, OUCH should concentrate on the medical "back door" There are doctors out there who are fascinated and truly interested in finding the answer to clusters. They would research if they had the money... how do we get that money? I don't think that public awareness will be the answer... as far as the cluster-free public. We are pitiful, but not dying....the most money goes to the illnesses that kill. That is just the way it is. So, where does that leave us? We DO want other cluster sufferers to be educated. We DO want doctors and insurance companies to be educated. But we probably won't ever have a super successful telethon! It seems to me that we need the doctors and more importantly the researchers on our side. And it also seems to me that, at least at this point, the small steps we make, by capturing the interest of the doctors, educating the sufferers and supporters and banging away (with the doctors help) at the insurance companies is the best course. Unfortunately, I know very little about how to go about this... but, trying to go too big, too fast for what everyone else thinks is "just a headache", when so many are dying from cancer, diabetes, heart disease, aids and all the other life threatening diseases could generate more scorn than support. I doubt too many of us support the research for a cure to excema... but many suffer from it, and not only physically but mentally. We are like excema...not fatal, but having mental and physical and even economic repercussions...which no one who doesn't have it or know someone with it gives a crap about. Perhaps OUCH's goals are too expansive. Perhaps they need to be more specific and taken in smaller steps. Just my opinion. I will probably rejoin OUCH eventually. Until then, I will continue to educate individuals... one by one... try to interest them... one by one. Love you guys. Sherry |
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Title: Re: Please answer these questions! Post by forgetfulnot on Mar 8th, 2004, 5:53pm Quote:
IMHO this is the biggest problem with OUCH, don't know how to fix it but politics turn me off and I think a lot of other people as well. :( Lee |
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Title: Re: Please answer these questions! Post by t_h_b on Mar 8th, 2004, 5:53pm on 03/07/04 at 09:04:22, Elaine wrote:
1. Yes 2. More education of physicians that come in contact with undiagnosed CH or who treat CH and more publicity in general for CH so people who have it can seek diagnosis; give lists of specific tasks people can sign up for 3. n/a--already a member |
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Title: Re: Please answer these questions! Post by thomas on Mar 8th, 2004, 6:27pm on 03/08/04 at 17:53:44, t_h_b wrote:
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Title: Re: Please answer these questions! Post by t_h_b on Mar 8th, 2004, 7:19pm on Today at 6:27pm, thomas wrote: Quote:
Ditto to what you said, Thomas, but don't forget the idiotic MDs like the one in that thread today who told the ClusterHead that she couldn't have CH because only men get CH. Who started that stupid rumor and who teaches it to these MD's??? Where do they learn that???? Who teaches them that everything they learn in school is true??? Who closes their minds??? Did sufferers of other chronic diseases have to teach the doctors about the disease? Did males with lupus have to convince doctors that men can get lupus, too? Do doctors have to go to lectures presented by diabetics to learn about diabetes? Why do I have to educate the medical director at my insurance company about the use of 02 in order to get my prescription filled? Shouldn't the nurse at my insurer who reviews the ER records be spotting patients who appear to have CH and then calling their PCP to suggest oxygen?? This is back-asswards. Health care professionals should be teaching laypeople about chronic illnesses, not vice-versa. It's insane. Thomas |
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Title: Re: Please answer these questions! Post by Cerberus on Mar 8th, 2004, 7:39pm E... Quote:
Yes...100% Quote:
Seems apparent to me that everyone is working pretty hard, I been working on some art for auction, and am currently trying to start a new chapter...don't reckon I could get much more involved. ;) I also reckon that #3 is not applicable to me. I suppose the things that are being done are enough for me, course, I am impatient and wish it would hurry up a bit, but, I also realize there is little room for error in those matters so.....I'll just continue to hurry up and wait. :) Ramon |
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Title: Re: Please answer these questions! Post by eyes_afire on Mar 8th, 2004, 9:13pm Hi Sherry. As usual, I'm sorry you need to be here, but I sure am glad you're on our side. You are SO correct: Quote:
I sure don't want to see CH on Oprah. It's not the place for it. The masses will not be sympathetic. --- Steve |
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Title: Re: Please answer these questions! Post by Charlie on Mar 9th, 2004, 12:20am Do I back OUCH? Sure but I wish it were easier for me to get there. It's always been hard for me to navigate though. I'm such a klutz that by the time I go there to check all the bickering we're told about, it's long past. I haven't seen a lot of posts there that looked all that bad anyway. Thanks Elaine 8) Charliehttp://www.netsync.net/users/charlies/gifs/OUCH.png |
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Title: Re: Please answer these questions! Post by Prense on Mar 9th, 2004, 8:53am on 03/07/04 at 09:04:22, Elaine wrote:
1. Yep 2. Listen to the people. Stop being so negative to ideas brought up. Stop using the structure of the organisation as an excuse for not doing things that are not on the current agenda. Proof all the text in the info section on the board so that this organisation is not putting out unprofessional documents. (I probably worded all this wrong, but dammit I know what I mean! ;;D ) 3. - I am obviously already a member, but... Obviously, fees will negatively impact the membership numbers. Hell, everyone of us already "pays" to have these damn HAs! Insurance, meds, broken homes... I do not mind financially supporting OUCH, but forced fees will affect the numbers. - I believe the inner circle does exist within OUCH. This also affects membership. - The lack of activity on the board is a factor as well. - This should be among the top priorities. It is a big problem that people do not join when they know it is there. There are many reasons, find out what they are and fix it. ---- I can see where the "bickering" illusion is seen. Unless you are there to read the few posts on OUCH daily or so, it can appear that way. I really just think it is an illusion, because two threads later, the same two people are joking around with each other. The content of the forums are as professional as they should be IMO. OUCH is making great strides, but my fear is that some people will get burnt out pretty quickly. Very refreshing Elaine, thanks. Chris |
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Title: Re: Please answer these questions! Post by Bob P on Mar 9th, 2004, 12:07pm Quote:
Hurray! Finally someone who sees disagreement and stating ones own thoughs for what they are and doesn't label them bickering or namecalling. I applaude your observations Chris. I still have access to make changes to the website. Please let me know of any typos, bad grammer, formatting, etc. that you see and I will gladly make the changes. respectfully, Bob P |
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Title: Re: Please answer these questions! Post by ckelly181 on Mar 9th, 2004, 2:01pm on 03/09/04 at 12:07:32, Bob P wrote:
Hi Bob, People have many viewpoints regarding conflict. Print can be interpreted many ways without visual cues and personal familiarity with the poster. The culture of the board is familiar to those who participate, and can obviously be viewed as off-putting to those who visit sporadically. This is a great opportunity to decipher why people feel the way they do. If the thread is followed closely, there are indications that conflict on the boards does effect some people - and generally, the few that speak up represent some portion of those who don't. What can be done, other than negating the validity of people's perceptions and feelings, to make the board a more welcome and receptive place? I think that is the gist of Elaine's survey. I, for one, would be more than happy to help members understand and feel comfortable in that environment, given the opportunity to do so myself. I let Elaine know that also. It would be unbelievably wonderful to find a cure for clusters. I would love to be rid of this horrid thing. That is first and foremost the cause. OUCH can grow in membership, I believe, if people are free to risk without ridicule, feel supported, are able to offer ideas that are considered, have a clear channel of participation, and there is an effective means of policing inappropriate "behavior." Also respectfully, Chris - yea, I know I said I wasn't going to post here again. |
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Title: Re: Please answer these questions! Post by Donna_D. on Mar 11th, 2004, 4:32am 1. Do you back O.U.C.H.? Just yes or no YES 2. If yes What would you like to see happening ? More SPECIFIC DESCRIPTIONS of how people can get involved. I think it is important to advise people how they CAN get involved in OUCH instead of saying JUST DO IT. Maybe OUCH should have a help wanted section....you know, we need XXX members to print and mail flyers to XXXX doctors, we need XXX members to donate items for auction, we need XXX members to gather names of reliable neurologists...By listing SPECIFIC ways people can get involved, it allows people to pick and choose their involvement based on their abilities, time constraints and (for some, myself included) their financial status. I can tell you from experience (with the newsletter) that given the opportunity people DO WANT TO HELP OUCH. I think that we all want to get rid of these headaches...some just need a little direction as to HOW. Is there something we can do to get you more involved? If I get any more involved, I may drop dead from exhaustion!! ;;D 3. If no what can we do to get you to join? N/A Donna D Elaine, excellent post. I think all opinions listed here, the good, the bad and the ugly, should be considered. After all....isn't this a brainstorming session of sorts? |
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Title: Re: Please answer these questions! Post by Elaine on Mar 11th, 2004, 7:17am I am sure all the BOD are watching this thread. I have a lot of PMs and email so I will be putting a report to gether with all the things we can do to improve things for you guys. So keep posting cause we want and need ya'lls advice , the good the bad and the ugly, to make it all work. Thanks again for all of your opinions! |
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Title: Re: Please answer these questions! Post by Cathi04 on Mar 13th, 2004, 3:25pm Elaine......I left CH.com once, as a way to make it impossible for me to fly in the face of some rude and offensive remarks which were being slung about. I know, this does not sound either positive nor constructive, but please, read on. Scrambling uphill, here, as I have for the last...ummm, maybe year and a half, I find a lot of information I agreee with wholeheartedly....and a lot I choose to disagree with.....my choice, my reaction. I know....CH sufferers can be a contentious bunch...even that's cool...but I think OUCH could benefit from some Utopian Charm pills right about now. OUCH needs all hands on deck....they have a huge agenda, and if even half of that is to be accomplished...there's gonna need to be some serious teamwork happening. WHEN all these things come about, it will benefit the masses, sooo, the masses should be doing what needs to be done. The OUCH BOD is a very small group of people. They cannot be expected to do all that needs to be done. If everyone capable were to bite off a chunk of a project, and work in harmony with their fellow team members, this could be a real win-win! The willingness to work toward a day when OUCH is no longer needed is the purest expression of their involvement! There are no egos where pain is concerned...more, it is survival. There is an amazing wealth of talent here-and it should be tapped! It may be that not all projects can be public....but there must be something the willing can do right now. Perhaps posting a "Help Wanted" forum?? The BOD is a hardworking group of people. They have a daunting task- they must move this group forward, yet not ruffle any feathers. Moreover, they must learn to listen, respond and choose their battles wisely and with respect. CH in itself, causes so much pain....why would ANYONE who visits here wish to cause any more pain?? This makes no sense to me at all. Working together, puttting differences aside...planning on the future, delegating tasks, and focusing on the skills, the pofessionalism, the dedication and the pure need for some answers should supercede all of the anger and insecurity. Everyone here is as different as they are alike....focus on the need, unify in one unwavering voice. The oars are waiting, the destination clear. The message? There is no time to waste with negativity. The course is set, the captain is at the helm... help your President and his staff move all involved toward a PF life. Don't tolerate any lack of movement, don't allow dissension to eat at the shell of this boat. I hope your questions open up a huge dialog, Elaine. The cohesiveness of this group is of utmost importance. Cathi |
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Title: Re: Please answer these questions! Post by Not4Hire on Mar 13th, 2004, 6:49pm ...wow...thanks Cathi.... your kind words are much appreciated... here's one of the *deals* we're working on.... click the link! ...and if ya have a minute, give us: the Board of Directors and Officers of OUCH --a bit of input on what you ....and YOU ....and even that guy/gal back there in the corner bashin' his/her head against the wall... THINK-WANT-NEED-HOPE FOR-WANT TO DO...... ... this *link* has, as of NOW, had 63 "reads" and THREE responses.... shit, you can do better than that..... this thread has 878 reads and 46 replies.... |
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Title: Re: Please answer these questions! Post by Cathi04 on Mar 14th, 2004, 6:09pm Steve, Yes, I did read your post on OUCH. I suspect the reason there is more going on here is the level of comfort people feel. An official invitation to participate will not change anything, if it comes from those whom they perceive to be not as open to the ideas presented. Personally, I think that the first step might be to correct the Image people have of the BOD. The job IS daunting......but I STILL feel that first this mass must be unified...they must not feel intimidated, or ignored...they must be valued for the opinions. Please note, I said IMAGE. I am not standing in judgement of anyone, I am suggesting that the BOD correct a deficiency in their image. ONLY then will people feel comfortable moving over to OUCH. Respect the thoughts and ideas, allow open forums where possible, and if a thread is begun, and it blooms well...nurture it and watch it grow. Elaine asked for suggestions, ideas...my idea, Steve, is that FIRST, you must garner the support of all of the members of CH.com...once you have that, along with it comes mutual respect and unification. THAT is when the wishes and desires will surface. Make the masses know they are a part of one huge team, and express your interest, genuinely for their effort and input..."as ye reap, so shall ye sow". Make them feel comfortable at OUCH as they are comfortable here. My wish, Steve, is for all those who deal with CH, and it is simple....PF....... BTW- I am not a sufferer.....and it has been made quite clear to me by some, nor am I am supporter, but I do have friends here I wish to God didn't suffer. Mutual respect, and a fervent desire to see this affliction banished from the face of the earth can unify everyone here. Show them all that they are wanted, needed and respected. Let me know how I can help. Respectfully, Cathi |
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Title: Re: Please answer these questions! Post by Kevin_M on Mar 14th, 2004, 6:12pm on 03/09/04 at 14:01:57, ckelly181 wrote:
Insightful Chris. Has a validity I'd corraborate. |
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Title: Re: Please answer these questions! Post by Cathi04 on Mar 14th, 2004, 6:26pm Kevin, Chris- You are right! Conflict is not a negative thing..it is constructive- IF it is handled correctly. Use conflict with respect, and dignity and it will be constructive. Cathi |
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