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Title: Whats wrong with this picture ? Post by don on Jun 23rd, 2003, 6:18am Trying to appease Gene 96 responses (at least) CH The orphaned disease 9 responses ER treatments 14 responses Vibes for a Friend 3 responses Why dont the old timers post anymore ? |
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Title: Re: Whats wrong with this picture ? Post by SommelierCH on Jun 23rd, 2003, 10:54am Damn-it Don, I had a 2 ½ page letter, that I had been working on for 2 fu*king (sorry jonny, looks like I just made Fubar King, not my intention) weeks, to placate Gene, touching on every point and nuance, now you drop this, onto my lap. In the overall scheme of things, there is nothing, really wrong with this picture. There is an ebb and flow to this site, just as there is in life. I think of this board, as a true microcosm of human existence, with a whole lot of fu*king (sorry jonny) pain thrown in. We need to generate traffic for this board to hum, if Gene generates traffic, then that’s cool with me. But, remember I equated the fights on this board, as similar to watching auto racing, just waiting for an accident to happen and the attendant ratings bump (I paid for that one). Geno Dude, I have, somehow, pissed off everyone on this board, at one time or another (only a couple of times on purpose). Contradicting my above statement, that is NOT, a microcosm of my life, I go through life, trying to make people laugh and feel good. Things just get twisted on this board, by Cluster Pain and these little squiggles on the page, that can’t show my eyes. But, you know what? If I were in need, every single person that I had a, sort of, confrontation with, would be right by my side. We are Clusterheads!!! The rest is just stage dressing. Another point (for everyone), don’t take things so personally. We don’t even know who you are. You are a squiggle on a computer monitor. If you check my past posts, you will see that I have been suggesting ideas and plans for us to motivate and mobilize as a Cluster Unit and grass roots, political force, for change. If we could mobilize, as a national (networked) political coalition, to get Cluster Headaches declared a disease, we could ameliorate so much suffering, because of Federal Government protections. We are much badder than a “syndrome” or “affliction”……We are FUCKENEH CLUSTERHEADS. “We Wear Our Pain With Pride”. When you check the archives, you will see that many people before us, have laid the foundation that we walk on. It is up to us to fight the good fight, and build on that foundation. We all have to keep rowing. However, dude, it seems a little narcissistic to include your name in every subject post title, when we can obviously see, in the next column, who started the thread. But, that’s just a personal observation. den MADE me do this, David J. P.S. The old timers don’t post anymore, because it’s the ebb and flow |
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Title: Re: Whats wrong with this picture ? Post by Jackie on Jun 23rd, 2003, 11:12am on 06/23/03 at 06:18:06, don wrote:
If memory serves me, Don, you've asked this question before so I'd be interested to know..... Why do YOU think the old timers don't post anymore? Jacks 8) PS....Purdy decent post there, O'Sommy.... :) |
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Title: Re: Whats wrong with this picture ? Post by CJohnson on Jun 23rd, 2003, 11:21am From this day forward, Regardless of the subject, I'll post in haiku. PFDANs -Curtis |
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Title: Re: Whats wrong with this picture ? Post by CJohnson on Jun 23rd, 2003, 11:22am If you don't like it, Then my next message to you, Will rhyme with 'haiku'. PFDANs -Curtis |
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Title: Re: Whats wrong with this picture ? Post by Jackie on Jun 23rd, 2003, 11:25am Hell, Curtis, I thought you already did.... ;D JacksWhoIsn'tScientificMindedEnoughToAlwaysFollowTheWholeDeal 8) |
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Title: Re: Whats wrong with this picture ? Post by cootie on Jun 23rd, 2003, 11:26am Good one David.....all I now is I am tired of them argumentive types (I deal with them enuff as it is round here) ......no matter what ya say...."NOPE wrong answer types"......I think I'll move on and ignore it.....I'll only read the silly stuff from now on. ;) ;D ;) Miss Digress Pam |
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Title: Re: Whats wrong with this picture ? Post by don on Jun 23rd, 2003, 11:31am Quote:
I cant speak for them but if I were to venture a guess I would say it is because the focus of the MB has become to blurred. |
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Title: Re: Whats wrong with this picture ? Post by Margi on Jun 23rd, 2003, 11:42am I think another problem is that the option of reading the 10 most recent posts is available. That way, only the last post in a thread is read and replied to, completely missing the original intent of the thread in many cases. I think that's why we're getting FIVE PAGES of replies to a thread that should have ended when the question was answered (i.e. when Grant posted that he wasn't directing that "install humour" thing to Gene). ::) But, as that 10 Most Recent Posts thingy keeps getting refreshed, it just becomes a free-for-all and the thread quickly goes off topic. I realize that this is answering a different question than you asked, Don, but I honestly do think it makes for big frustration for a lot of people. I also don't think that ANYONE here can make posting rules or profile rules or any other kind of rules, other than DJ. I think THAT trend is pushing a lot of regular posters away, as well. |
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Title: Re: Whats wrong with this picture ? Post by CJohnson on Jun 23rd, 2003, 11:46am Maybe the general posts section should be divided into two areas. Serious discussion, and light-hearted discussion. Thats where the division seems to come from. Some people want to be serious most of the time, and some people want to be light-hearted most of the time. And some people want both equally. My personal feeling is that this board is great as it is. It has a perfect blend. If I want to laugh, I'll find something funny. If I want to talk about neurological mechanisms of pain and neurotransmission, I can. And if I was feeling really down and hurting, I would have to beat the supporters back with an oar to keep from being smothered with love (mom always said "a warm handshake is as good as a hug") With that said, I don't expect people to care about my opinion or to take what I say seriously. If they do, great, if they don't, I don't care. But that is just me. PFDANs -Curtis |
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Title: Re: Whats wrong with this picture ? Post by Donna on Jun 23rd, 2003, 11:52am Well since you asked, I'll give you my opinion. It's as with any other volunteer organization. Only a few volunteer.......usually within a realitivly short time of joining. The joiners work their asses off for a couple of years trying to get the organization off the ground. ...to get the words "cluster headache" known. Remember how big our Liaison Committee was under Steve? What happened? Remember our "Publications Committee? Several people worked on the "first" brochure and newsletter.......Ted has done the last what, 3?, pretty much by himself. If you haven't done one, you can't imagine how much work it is. Then, in frustration, most just fade away. And some stay, hoping that someday more will volunteer. In the past 4 years or so, can you compile a list of the people that put forth hours and hours of their time researching, organizing, typing, making phone calls and delivering brochures, and puting conventions together? Ask Barb how many it took her to incorporate OUCH, just for one example. ? Yes, we need all the supporters we can muster up. Yes, we need other sufferers to bond with, learn from and to build friendships with. But this will never get us all that we really need....a joint effort to make this malady known!! A real feeling of construction. A big number of people willing to work for the cause. The vast majority are just happy to have found that they really aren't alone. That's not a bad thing. It is a small miracle just to have found this site. I'm just offering my opinion of where our people eventually go. |
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Title: Re: Whats wrong with this picture ? Post by Donna on Jun 23rd, 2003, 11:56am I seem to have forgotten...............The old timers were interested in organizing OUCH. The message board has a different meaning now. But none the less, that's what the old timers had in mind ........to further the cause of cluster headaches. |
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Title: Re: Whats wrong with this picture ? Post by oringkid on Jun 23rd, 2003, 12:03pm ? What 10 most recent post thing?? What am I missing? Evidently stupid as dirt today, Sherry |
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Title: Re: Whats wrong with this picture ? Post by don on Jun 23rd, 2003, 12:14pm Dirt contains nutrients and minerals that provide life. When dirt is properly compacted it will provide stability to the most massive, complex, structures on earth. When seeded, dirt will provide a wonderous assortment of colors and fragrances pleasing to the eye and nose. I like dirt. |
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Title: Re: Whats wrong with this picture ? Post by Margi on Jun 23rd, 2003, 12:26pm Sherry, It's in the Forum Statistics area, right above where you see who's online on the home page of the message board. (don't feel bad - I had no idea you could go subject to subject by pressing the "Next" button at the bottom of each thread either until Don mentioned it in another thread.) |
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Title: Re: Whats wrong with this picture ? Post by oringkid on Jun 23rd, 2003, 12:32pm Thanks Margi LOL! Don, ok, ok, I'm stupid as a box of hair. How bout that? Sherry |
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Title: Re: Whats wrong with this picture ? Post by Donna on Jun 23rd, 2003, 12:34pm Oh for gosh sake..........a "next button"!! I haven't seen it until now. Thanks Margi. don...if all things beautiful were buried in one spot, would the flowers be brighter and smell more fragrant? stfu, Donna. |
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Title: Re: Whats wrong with this picture ? Post by oringkid on Jun 23rd, 2003, 12:39pm I knew about the next button, but never noticed that 10 posts thing. That's purty cool. I think I'll just use that from now on.... Just kidding. LOL I couldn't stand leaving those little "new" tags sitting there. LOL Sherry |
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Title: Re: Whats wrong with this picture ? Post by Drk^Angel on Jun 23rd, 2003, 4:32pm I don't see anything wrong with the picture, except for the fact that some people expect everyone to announce publically anytime they do something good... Sorta like when your kid first starts potty training, how they'll run up to everyone they can, and tell them they pooped in the potty. I for one spend as much time as I can to help promote awareness for CH whenever possible, but I do not, and will not post everything I have done, nor post anytime I do something else. Why not? Because I do not feel I need to. I do what I do because I feel I should... Not because I want recognition... Not because I want to fit in. I'm not saying that everyone that replies to threads like the ones don mentioned are just doin' it for a "Yay me!" But I do think that a lot of people are like me, and would rather not tell everyone everytime they do something. It all boils down to the fact that if someone wants to help, they will... If they don't, they won't. Mayhaps we should spend more time doing something, and less time complaining about the posts. PFDAN................................... Drk^Angel |
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Title: Re: Whats wrong with this picture ? Post by Elaine on Jun 23rd, 2003, 4:53pm The message board. Who should post ? What should they post about? Can the post be funny? Personal? Flaming? Prayer? What post should be answered? What post get the most replys? The questions go on and on> I been here since April of 1999. There is one thing I have learned!!! There are more friggen what this board should be post than anything else here! No matter what you do no matter what ya say there will ALWAYS be someone who will complain, and dislike it. The board is what the board is...no one but DJ can change it. |
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Title: Re: Whats wrong with this picture ? Post by jonny on Jun 23rd, 2003, 5:33pm ROCK-N-ROLL....E Baby!!!! ..............................jonny |
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Title: Re: Whats wrong with this picture ? Post by Woobie on Jun 23rd, 2003, 5:45pm on 06/23/03 at 11:46:14, CJohnson wrote:
NOT a haiku just an observation. LOL!! ;D <-------- (which means, JUST JOKING!!!) tina :-* |
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Title: Re: Whats wrong with this picture ? Post by Ree on Jun 23rd, 2003, 5:57pm E......I am with you today... and Donna great post... someone is always complaining and Im just glad you are all here... even you Gene... what happens here is the welcomers welcome, the supporters support and those that post alot post alot... Everyone reads the conflicts like soap operas... and gets involved by...the appologizers apologize... the fixers fix and then someone says "Can't we all just get along" I love it here... I post to what I want to post to... I welcome when I can, Support when I know what to say if no one has said it first... I apologize when I should, and try to fix when I dont know when to mind my own business............ thats just me ree |
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Title: Re: Whats wrong with this picture ? Post by jonny on Jun 23rd, 2003, 6:01pm "Thats just me Ree" You just sumed up this whole board in a few sentences, Ree......and did it nicely!!! ....................................jonny |
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Title: Re: Whats wrong with this picture ? Post by don on Jun 23rd, 2003, 7:29pm Quote:
LMAO Sherry, just breaking your........................ HMMMM? What do you break on a woman? |
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Title: Re: Whats wrong with this picture ? Post by dellp on Jun 24th, 2003, 12:56am Hey All, Sorry to break the banter, but I’m going to get serious here. Yep, I definitely have a tendency to be serious a little (?) too much, and I am working on that. But not here or now. Here’s the response I have been working on: Don, Thanks for posting and posing the question: What’s wrong with this picture? Well, I’ll tell you what’s wrong here. It’s my turn to feel the finger pointing at me - not for everything, but a part of it. For right now, I am the one responsible for it - even if I am not - it seems the camp is divided and it’s a battle of silence and I’M F**KIN TICKED OFF ! I know there are many different levels as to how this site and OUCH function: one of many functions, as is my understanding, is to increase public awareness of CH. I made a post to see if we couldn’t get NIH to include CH on their rare diseases list by sending lots of emails. In the first 18 hours there were 2 people to respond; not what one would call ‘overwhelming’ support. The string was rapidly heading to page 2 so I posted again - this time got about 6 replies. This abundantly underwhelming response was for something on target and on purpose for OUCH and most of the old timers ignored it. Before that was the tryptophan. Now OK, yeah, I did start those threads out a little hokey with the ‘Turkey Trials,’ but it is dealing with serious stuff - and you old timers with all the knowledge should have recognized it. With the trypt/serotonin/hypothalamic connection I thought you would be all over it - this is the solid scientific connection/explanation so many of you have been asking for AND IT IS VIRTUALL IGNORED! (there was good stuff about the bio/neuro/chemical aspects but seems there was little evidence of any interest other than scientific discussion. (Hopefully I am a little early with this judgement as yet there has hardly been time to order it, get it and try it.) Could it possible be that I am the ‘Snake-oil salesman’? I talked about chiropractic and acupuncture… oh my… Horrors! GET OVER IT, DAMN IT! I am a trained scientist (and I’ll get into that one with anyone who wants to, anytime.) OK, so I have an open mind and I have been known to scientifically approach yet unexplained and/unconventional subjects - SO WHAT. You don’t have to agree with me - that’s fine, I don’t need it and I don’t want it. But if I bring up an important issue, it shouldn’t be ignored because I believe something different than you. That is childish and irrisponsible. And to head off one question: Is it an important issue because I bring it up? No. One topic is important because it could be in the mission statement of OUCH (Does OUCH have a mission statement? :-[,) the other because there is sound, logical scientific plausibility that some - maybe many - people will actually respond positively to this untried approach to CH. I have lots more I could say but it’s getting late and this post is getting long. Thanks for letting me rant a little. Ree, you said it perfectly - I agree that the mb should stay the same. Yeah, sometimes the topic doesn’t really say what’s in the thread, but most of the time it’s pretty easy to distinguish serious from other. Donna, I want to get to your post above in my next new topic post tomorrow, about this time. NOTICE TO ALL: I have another idea, some very important things to be discussed and I DARE any of you to miss it. You will know it when you see it. Wishing PFDAN to all, Dell |
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Title: Re: Whats wrong with this picture ? Post by gene on Jun 24th, 2003, 5:02am This really is my last post and I'm truly sorry for the hassle this has caused everyone. Appease Gene? Grant and I worked out our disagreements immediately, the rest has been other peoples attacks that I have responded to. Many of these I didn't have any idea where they were coming from/ I guess from some other thread where I was being discussed without knowing. The site has been extremely useful for me/ I have found new ways to treat CH etc. but the message board is weird!! It was truly stupid to use my name in the title section, I realize how that must look to you all/ It was really just not noticing that the next line showed your name/ I should have noticed that no one did this/ I just wanted people to know that the post was from me as I had began to make some friends on the site. I guess my style of arguing is perceived as if you don't agree with me you're wrong/ again not the case, but how would any of you know that? I really think my mistake of using my name in the titles of my posts has turned many off/just a dumb mistake. anyway no big deal, I had some fun, life goes on... Could someone post or e-mail me instructions for cancelling my membership? I'll get out of all of your hair. Thanks, Gene |
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Title: Re: Whats wrong with this picture ? Post by Peppermint on Jun 24th, 2003, 5:36am Gene......remember "Moonstruck"? *slap* snap out of it! ;) Stop saying you're in people's hair. Once again, to quote Cootie ;D, "hold your spot". This is your home. If'n ya wanna leave, that's your beeswax. But I don't see anyone at all chasing you out. Shoot, look at all the posts you've inspired. Thought provoking at the very least. Don't you realize every ingredient counts? Anyway, wishing you PFDAN's and all that. I'll go away now. Peppermint edit: Ok. I read the other thread. Or should I call it a Sweater? Cashmere please..... the best Jerry, only the best. :P |
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Title: Re: Whats wrong with this picture ? Post by Big_Dan on Jun 24th, 2003, 9:22am ... LMMFAO @ CJohnson's haiku... -Big Dan |
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Title: Re: Whats wrong with this picture ? Post by Jackie on Jun 24th, 2003, 11:49am Gene..... Hush up about this leaving stuff, sit back down, get your oar in the water and start rowing >:( You have NOT been excused from the table.... ;D Jacks 8) |
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