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Title: The Family Post by Magick on Jan 13th, 2005, 9:10pm This is not a rant or a flame. I’m not a troll. Though I may look like one J I’ve been concerned about the family lately. There has been allot of shit slinging and name calling going on between family members as well as to newbie’s coming here for the first time just trying to ether find out what CH is all about, or they have CH themselves and are just trying to make some sense of it all and get some advise. Sometimes some of the family members have all the warm fuzziness of an evangelical newborn zealot nut! They condemn anyone who has migraines. They quickly testify that their pain is far worse then another clusterheads. (Because they’re chronic and the other is only episodic). They refuse to accept anything that falls outside of there own personal experience. If a migraine sufferer post they are told that they are girl thingy’s and to go away. If they’re a newbie trying to see if they my have CH and it turns out they don’t, there pain is lame. Go away. I understand that this is a CH board and that we are a family. But do we have to be the mafia? Don’t most of us have friends and strangers at family gatherings one in a while? Does every family member have to be that strange uncle Norman that creeps everyone out? What is the obsession with who suffers more? What makes you better because you have CH? Someone who suffers from normal headaches all the time is experiencing pain too. Not the same level of severity that a clusterhead does, but it IS pain. Would you tell a cancer patient to suck it up at least they don’t have CH? I would not put it past some of us. My pain is worse then yours is one of the sickest mental thinking patterns that there is. The ones who tout this message the most are the same ones who say, “I don’t want your dam sympathy!” So stop then already! If we suffer the most, Should we also not be the most compassionate towards all forms of pain? Sure CH does things to you and can make even the nicest of us turn real ugly. But if all you’re here for is to rate others pain and dam the non-CH’ers, what good of a supporter are you? “Anger is power, I use it to protect myself from insanity” Save it for the hit’s not the family or the friends of. |
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Title: Re: The Family Post by forgetfulnot on Jan 13th, 2005, 11:30pm Quote:
Thehun.net ........................ Lee |
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Title: Re: The Family Post by Renee on Jan 14th, 2005, 7:43am Very nice post Magick! I especially like the last sentence. thanks ;) |
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Title: Re: The Family Post by Jeepgun on Jan 14th, 2005, 8:07am Well said, Magick. |
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Title: Re: The Family Post by Roxy on Jan 14th, 2005, 9:05am Quote:
It's not that the family here thinks less of anyone. But, DJ developed this site for clusterheads only. The above quote is from the first page of this site. And I do believe I disagree with your statement about chronics. I have never seen a chronic on this board state that their pain is more than an episodics. If you will do your research, you will find many threads where we have stated that it seems to be tougher to be episodic. |
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Title: Re: The Family Post by don on Jan 14th, 2005, 9:08am Quote:
For the most part they are refered to a site that is more appropriate to their needs. Quote:
Show me ONE quote to that effect. Quote:
Dead wrong. Quote:
Read the sign on the front door. |
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Title: Re: The Family Post by Kevin_M on Jan 14th, 2005, 9:34am on 01/13/05 at 21:10:54, Magick wrote:
Quote:
Kevin M |
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Title: Re: The Family Post by sandie99 on Jan 14th, 2005, 10:00am Goo post! I must agree. As my dear pal put it: "if your arms is cut off and my leg is cut off, who can tell which hurts more? We both are in pain" PFdays to all, sandie99 |
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Title: Re: The Family Post by don on Jan 14th, 2005, 10:06am Quote:
I see nothing about migraines or amputations in that line. |
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Title: Re: The Family Post by Margi on Jan 14th, 2005, 11:24am exactly, Don. For so many of us cluster sufferers and supporters - we have spent decades trying to find answers to this pain. Misdiagnosis after misdiagnosis, antibiotic prescription after antibiotic prescription, I'm sure we've ALL gotten sick of being told this pain must be migraine or sinus infection. To finally find this oasis that validates the fact that we are NOT crazy (well, everyone except Don that is), that this really IS something different - hell yeah, we're gonna protect the purity of this site. We can and should direct non-cluster folks away gently and, for the most part, we're getting a lot better at it than we used to be. But to include non-cluster folk here and encourage anyone with head pain of any kind? Nope. Not gonna happen. Cancer folks don't post on MS sites. Diabetics don't post on epileptics sites. Why all the ruckus about trying to keep a clusterhead site limited to cluster folk? |
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Title: Re: The Family Post by ExplodingEyeBall on Jan 14th, 2005, 11:32am Didn't you have to show your diagnosis papers or a note from your neuro to get your membership here? BTW: This place is starting to look like a real family. A dysfuncional family. You know.... Bite someones head off for no good reason? At least one knock-down-drag-out fight daily? He said, she said, Whaaaa!!! I'm telling on you because your a jerk!!!! You hurt my feelings so I'm gonna say something sarcastic about you and make you look stupid. |
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Title: Re: The Family Post by BarbaraD on Jan 14th, 2005, 11:41am Come on guys -- I don't think Magick intended to start WW111 - just stated an opinion. I'm chronic CH, have migraines and post-traumatic concussion headaches on top of the CH. They all hurt like hell. When I was episodic I hurt like hell too and have all the sympathy in the world for episodics as well as chronics. We all say things here that don't have a thing to do with CH - we all make wisecracks (that are sometimes taken the wrong way). That's how we get to know each other. I've been around since they moved the first load of dirt in to Clusterville and have seen a lot of changes (some good - some not so good). Maybe it's just my age, but I don't see anything anyone can say that is cause for getting ticked off enough to leave permanently (except maybe Ali and some of the Annonymous's and that was with cause). It's not like we're standing face to face and can knock each other's block off. We're TYPING here. We're here for support. That should be our main concern and usually is. None of us is Sally Sunshine all the time, so we learn to take each other as the day comes. If we took a poll (heaven help us!) this board has probably saved a lot of lives even with all the bs and everything else that goes with it. I know I wouldn't be here today if I hadn't found it. That's something we all need to keep in mind. And anyhow, I love you so what else do you need [smiley=huh.gif] Hugs BD |
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Title: Re: The Family Post by don on Jan 14th, 2005, 11:46am Quote:
And I rebutted it with mine as I always will when someone criticises the intent of this site. |
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Title: Re: The Family Post by nani on Jan 14th, 2005, 12:04pm Quote:
Quote:
I'm not ?!?!?! shoot...I better go find some more of those um..."happy sunshine" pills Quote:
Very true...my bi-polar, crazy assed abusive mother used to pride herself on the fact that she could be charming, kind and wonderful to outsiders and save all her crazy, nasty stuff for us. I teach my kids that even thought it's OK to occasionally act like a butthead at home...our best and most polite, loving behavior is what we should use with the people we love and care about. In any family there are going to some that don't like each other or get along. There will divergent opinions and strong feelings about them. You learn to debate in a non destructive way. You learn to let the others be, let them be themselves and love them anyway. Or you don't...and how miserable an individual you will become...always looking for that opening to start something. Sometimes you start it just to be in it...sometimes just to get some perverse pleasure out of watching others get into it... We can choose to not respond those types and get on with what we're here for... Just my [smiley=twocents.gif] love to you, nani |
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Title: Re: The Family Post by don on Jan 14th, 2005, 12:10pm Quote:
If you state an opinion dont expect evryone to agree to it especially when it effects the integrity of CH.com His post was nothing but criticism and I suspect he knows nothing of the history of what this site has accomplished. |
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Title: Re: The Family Post by Jeepgun on Jan 14th, 2005, 12:25pm I see your point as well, Don. |
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Title: Re: The Family Post by Kevin_M on Jan 14th, 2005, 12:32pm on 01/14/05 at 12:10:36, don wrote:
Without a doubt. I believe DJ used the words "devoted completely and exclusively" very well for a great purpose. Kevin M |
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Title: Re: The Family Post by don on Jan 14th, 2005, 12:56pm Quote:
So what is it people dont get about that ? |
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Title: Re: The Family Post by Big Dan on Jan 14th, 2005, 1:14pm on 01/14/05 at 12:56:45, don wrote:
apparently everything. -Big Dan |
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Title: Re: The Family Post by Magick on Jan 14th, 2005, 4:48pm quote:And I rebutted it with mine as I always will when someone criticises the intent of this site. Where did I say anything about the intent of the site? Quote:you state an opinion dont expect evryone to agree to it especially when it effects the integrity of CH.com His post was nothing but criticism and I suspect he knows nothing of the history of what this site has accomplished. I'm not one to care much if people agree with me. I say my peace and listen to there’s. I agree to disagree. Can you? quote:His post was nothing but criticism and I suspect he knows nothing of the history of what this site has accomplished. Criticism? No just a subjective observation. The history I know of the site is of my own. This place educated me gave a family and saved me. What else do I need a history lessen about? |
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Title: Re: The Family Post by Kevin_M on Jan 14th, 2005, 6:02pm on 01/14/05 at 16:48:26, Magick wrote:
Subjective: 1. existing in the mind (opposed to objective) 2. personal 3. placing excessive emphasis on one's own moods, attitudes, opinions, etc. 4. as it is known in the mind, distinct from the thing itself 5. specific conditions of the mind as distinguished from general or universal experience. Thank you for clarifying. Kevin M |
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Title: Re: The Family Post by CC2004 on Jan 14th, 2005, 6:27pm I found this site on dec16 and I cried and cried - I was a wreck, desperate and alone in pain (even though I have the most loving husband in the world) - what I found was all you guys - the clusterville FAMILY - I was no longer alone with my pain! This place saved my life! I wasnt going to kill myself (Ive been muddling through for 28 years - wasnt going to let the bastards do me in now) but this place saved my life - I found strength again, compassion, understanding, support Im damn sure we can all relate to this No single one of us could EVER give back what we have received from coming here, but COLLECTIVELY we can contribute and ensure this place is what we ALL (those of us already here and those still to come) need it to be - we need to PROTECT AND NURTURE this most special place and ensure it is the place for DJ and all of us to feel proud of and to BELONG OUR CLUSTERHEAD FAMILY!!! Although I cant know how it was here much before last month, I have read most of the threads & got I believe a pretty fair understanding of whats happening, the first one to really upset & shock me being "ever notice" The thing is, in my humble opinion, there are SOLUTIONS to these issues. It is too easy for new members to come to the boards and not know the ettiquite - and once we're here, all the other links to the entire site with other valuable info are not here! And as we have all seen, it can be a mine-field here... For my part, I am working on some possible solutions for many of the issues I have encountered here, and hopefully with a fair understanding also along with fresh experience of difficulties encountered, I hope to make a positive contribution to this wonderful place Getting down off my soapbox now bless you each and every one [smiley=heart.gif] CC |
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Title: Re: The Family Post by tenacious on Jan 14th, 2005, 7:51pm EVERONE who comes here is or knows someone who is in pain. They come here looking for info and/or support. Whether this turns out to be the right site for them or not, they should NEVER be treated in a way that adds to their pain. :( When we walk into a store, we don't always find what we're looking for, but our opinion of the store and what we say about it to others is affected by how we are treated there. A website is no different. Even the most well-intentioned comments have a way of sounding VERY different (sometimes harsh) in text. :-/ Newbies don't have the background to know the motivations of those who have been here longer. They're also not the only ones who don't know ettiquette. It's about treating people kindly, saying things in ways that are not hurtful, and reading our posts from the other person's point of view BEFORE we hit send, ESPECIALLY if we're having a bad day. Those who are not willing to do that are the reason this site sometimes feels more like a minefield than an oasis. :'( Pain is no excuse for choosing to post harshly. If you really want to feel unwelcome in the family, try being a genuine clusterhead with a couple of "atypical" symptoms. [smiley=bash.gif] Misdiagnosis works both ways. People who need the site and belong here should be made to feel like welcome members of the family. Personally, I don't come around much anymore. I came back looking for expat_asia after the tsunami. No sign of him, and my pm wouldn't go through. Anybody know anything? [smiley=huh.gif] |
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Title: Re: The Family Post by Jonny on Jan 14th, 2005, 8:21pm STFU YOU WHINING MF'ers!!!! Magick, Lay down, we will tell you when we need you to pull your head out of your ass. In the mean time STFU and ask Don for a pass to the bath house......Lance will hook you up!!!! ;;D What say you Don? ;) ................jonny (YOUR KING!!! ;D ) |
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Title: Re: The Family Post by Ree on Jan 14th, 2005, 8:27pm OMG drama drama drama... this place lives for threads like this... Magick... I liked your post... but then again I am the light fairy I like everyone and believe in the good in all people... Try it you'll like it take the same drama... and reverse it......... find the good in the post instead of ripping it apart... I keep telling you guys the world is ending... When are you gonna listen... Well Im going to Heaven... whose coming??? and I'll bet it happens next year 06/06/06 the one you'll be quoting when IT finally happens... ree |
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Title: Re: The Family Post by Ree on Jan 14th, 2005, 8:28pm on 01/14/05 at 20:21:41, Jonny wrote:
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Title: Re: The Family Post by CC2004 on Jan 14th, 2005, 8:39pm Jonny, shame on you - that was just horrible! Ive nearly always enjoyed your posts, but that was unnecessary and horrible - there are a lot of people who have contributed positively to this thread - your message comes as a slap and hijacks the helpful stuff here (yes Im being brave, Im finding my voice!) CC [smiley=bag.gif] |
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Title: Re: The Family Post by don on Jan 14th, 2005, 9:49pm Quote:
Thats right Jonny! I cant believe that you haven't been deleted from this board yet for the what, 5 or 6 years, you've been laying waste to the place. You tell em CC! |
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Title: Re: The Family Post by CC2004 on Jan 14th, 2005, 9:56pm on 01/14/05 at 21:49:44, don wrote:
I know I know but [smiley=sayno.gif] I never want Jonny to go, I'll even [smiley=bow.gif] I mean it, seriously! I love Jonny, just not always what he types SORRY JOHNNY! CC [smiley=bag.gif] |
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Title: Re: The Family Post by thebbz on Jan 14th, 2005, 9:57pm He He Now I need popcorn!! ;;D [smiley=laugh.gif] My head ain't bangin I'm happy happy.... 2months past due with the demon. back to the board. BB |
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Title: Re: The Family Post by nani on Jan 14th, 2005, 10:01pm Collette...that's our angels way of breaking the tension. Cute as a bug's ear isn't he? *pinching Jonny's cheeks (on his face) * |
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Title: Re: The Family Post by CC2004 on Jan 14th, 2005, 10:10pm on 01/14/05 at 22:01:45, nani wrote:
I know, and it nearly always works & I love him for it, and Ive said Im sorry and I truly am, wont do anthing like that again & yup ;) cute alright, fell for him the moment I saw him in his bloomers ;;D CC |
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Title: Re: The Family Post by nani on Jan 14th, 2005, 10:11pm Those depends are so damn sexy aren't they... ;;D |
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Title: Re: The Family Post by Jeepgun on Jan 14th, 2005, 10:47pm If the end of the world is coming, my bags are packed. Hoka Hey! On to the next adventure! There are worlds other than these! [smiley=headbanger.gif] |
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Title: Re: The Family Post by CC2004 on Jan 14th, 2005, 10:58pm on 01/14/05 at 22:47:30, Jeepgun wrote:
Im scared [smiley=curtain.gif] dont leave |
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Title: Re: The Family Post by don on Jan 15th, 2005, 11:08am Not directed to anyone in particular so save it. Bottom line to all this is this: Most of the good things that happen through CH.COM are the things you dont even hear about because it's not posted. So you can rant and rave to your hearts desire about Newbies, old timers, netiquette, send vibes, prayers and hugs,blah blah blah but the REAL stuff is done behind the curtain. Just keep that in the back of your mind the next time you feel this site isn't what you want it to be. |
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Title: Re: The Family Post by PrettyH8Machine on Jan 15th, 2005, 11:38am on 01/15/05 at 11:08:46, don wrote:
Very true Don. One thing I think is very sad is how people focus so much on the negative crap on the board and argue about it, while the good things are overshadowed and by some, ignored. I try to focus on the good stuff, since I already have too much negative junk on this side of the screen. Anyway, that's my two cents worth. Peace, CD |
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