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Title: To belong or not to belong .. that is the question Post by OneEyeBlind on Nov 12th, 2002, 1:39pm The subject of who belongs on this board and who doesn’t has come up over and over again since I joined four months ago. The subject of who and who shouldn’t offer advice has come up as well. I know I am new here, but perhaps sometimes new blood brings new insights. Thought I would share my thoughts with you. To the subject of advice: This board has a disclaimer on the front page that states …. DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional! I think that speaks for itself. Anyone who goes out on a limb to tries to help someone does so with this disclaimer on their back. Each of us is entitled to disagree with each and every post. So if you don’t think the advice is good, regardless of the source, say so. Ueli does it quite well. To the subject of who or who should not belong,, well … this isn’t as well defined on the front page so I went to the dictionary. Hoping that DJ, when he produced the front page thought about it quite a bit. Knowing his reputation, he did. The definition of a supporter is: To carry the weight of, to hold up, encourage, help, to advocate, to uphold, to maintain with money and with subsistence, to help prove, vincicate, to bear, endure, to keep up, maintain …" After reading this definition - I suggest we all think about who belongs. The following questions might just get ya thinking – Do we want to remain some type of exclusive club where only people we think are fit to join can join? I have heard complaints about the number of people joining the board, the number of people here who don’t have clusters, and on and on it goes. I am not trying to point fingers here. I am just trying to open your eyes. I for one am not in to the country club scene. I say the more people who support us the better. It helps to get the word out, and increases our chances of donations being made to cluster head research, and support for ouch. I want a friggin cure. I do not want to live the rest of my life with these headaches. And if that means opening our doors to anyone who wants to enter and dealing with the consequences, than so be it. Open the flood gates. Cause anyone that wants to stay in this group must have something to give. No one in their right mind wants to join us in our pain. Where would cancer research be without all the supporters? Where would any debilitating disease be without the people that support it but don’t have it ???? It’s a friend of a friend of a friend that helps the cause in the long run. Just the way I feel. I would appreciate if you took some time to reflect on what my post is saying before responding. I took a lot of time putting it together. Sometimes, our cluster brains just jump heavy and fast. Think about it. And then my friends, you can flame me to death if you want !!!!! I'm puttin on my flame retardent suit now ... thank's for the idea firebrix !!!! PFDAN’s to ya’ll. |
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Title: Re: To belong or not to belong .. that is the ques Post by don on Nov 12th, 2002, 2:22pm The question of who should be posting here is a simple one to answer. Sufferers and supporters. sufferer= either you have them or you dont. Supporter= anyone who empathizes with our pain I dont get the point of your post. |
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Title: Re: To belong or not to belong .. that is the ques Post by brad267 on Nov 12th, 2002, 2:30pm About Advice I am perfectly happy assuming there is a "but I'm not a Doctor" at the end of each post. I read the Disclaimer, and that's all that I need. I look forward to other's opinions (and advice) because you all have helped me. I read. I print out what works for you guys. I take my pile to the doctor, and we discuss what's next for me. My doctor has the final say about what I should try next, not you guys. But, after saying that, you guys haven't been wrong yet -- and keep that advice flowing!!! In respect to your mission statement, you are doing an excellent job helping new people like me. Who should and should not be here? Hopefully, it's the newbies that can determine whether they belong. Like OneEyeBlind said, "no one in their right mind wants to join us in our pain." The negative advice is just as helpful as the positive advice. I'm not sure if I should be here, and parts of me like reading the "nope, you're not a clusterhead" comments, because, like you guys (I assume), I DON'T WANT TO BE A CLUSTERHEAD! I want to explore possible avenues that could "fix" me. Hopefully, I can stay until I figure it out for myself. If I'm not a Clusterhead, then I'll fade off elsewhere on the internet. If I am a Clusterhead, then I can continue to learn and cope, and help some newbie 6 months to a year down the road. This message board is very successful, and the bantering ADDS to this success. I want all the information you can supply - be it positively or negatively written!!! So, IMHO as a newbie, I don't see anything wrong, and nothing needs to be fixed -- but this isn't my message board. Brad |
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Title: Re: To belong or not to belong .. that is the ques Post by Elaine on Nov 12th, 2002, 2:38pm This is a subject that will never be agreeded on by everyone!!! DJ is the ONLY ONE that knows what he wanted this Board to be. He must not have a problem with it cause he isn't posting . I personality think there is a difference between ch.com and OUCH! Any and every one join OUCH! But most people here come to Talk to OTHER that HAVE clusters. I am thankful for all the support I get. But if someone has never seen someone have one and they don't have them....then they don't understandand all they can do is say they are sorry..they can't tell me what to do to help oh they can give me the drug name but they can't tell me they took it or what effect it had on them. They can't tell me they know what it is like to scream to the top of your voice in the middle of the night out of dead sleep with a cluster they UNDERSTAND because they don't!!!! The special thing about this site WAS it was a cluster site. Now its people who don't have clusters comeing here to have cyber sex. Its people who put the word headache in the search and found this place and said hey I like this place, damn I have clusters. A lot of you are here to have a good time feel important see if you can out post someone else.. Not because you care. I am sorry but its how I see it. It don't matter how you feel how I feel or any damn body elses on this boad ITS NEVER GOING TO CHANGE!!!!! This board is what it is!!! Its a FRIENDSHIP BOARD!!! We let it become that us bleeding hearts that said oh lets don't fuss, let all agree. Nuff said! |
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Title: Re: To belong or not to belong .. that is the ques Post by Peppermint on Nov 12th, 2002, 2:38pm Don.. I agree with you on this... Quote:
From my experience and what I've seen here, the definition of supporter is quite more specific to some. As far as whether I care about that...I'm sure nobody gives a shit anyway. MINT |
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Title: Re: To belong or not to belong .. that is the ques Post by Drk^Angel on Nov 12th, 2002, 2:52pm People come here for cyber-sex? :o PFDAN................................... Drk^Angel |
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Title: Re: To belong or not to belong .. that is the ques Post by brad267 on Nov 12th, 2002, 2:53pm Not tonight, I have a headache.... :) Brad |
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Title: Re: To belong or not to belong .. that is the ques Post by Jackie on Nov 12th, 2002, 2:53pm Nancy, This site is devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches! I didn't write this intro...DJ did. His intention of who belongs is clear ::) What motivates others outside this perimeter? Who knows.... ??? Jacks 8) |
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Title: Re: To belong or not to belong .. that is the ques Post by ave on Nov 12th, 2002, 2:57pm Sorry to disagree with you, one eye blind. It is my experience (not just on this MB I hasten to add) that a lot of people find gratification in belonging to a group. ANY group. And since these people do not know about cluster pain, they think nothing of joining in - and it IS easy to pick up the right words to talk about clusters. I don't mean to say all those new people pretend - not at all. But on a virtually anonymous message board like this you must accept that a certain percentage of posters will be fakes. Also, many docs don't know sheeeit about clusters. Who can blame sufferers from other types of headache, for latching on to this very special and rare neurological disorder? Finally, I feel I belong to this board. I have clusters. I have been posting for some time - 2 years? (though not as often these last months - there are reasons for that.) I feel comfortable in the knowledge that neither you nor any other newbie can chase me away, just because they feel uncomfortable with wider knowledge I MAY have |
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Title: Re: To belong or not to belong .. that is the ques Post by ave on Nov 12th, 2002, 3:01pm And here my puter or the MB threw me out... Concluding, it is not up to you to say I belong, or up to me to say you don't belong, either. There's a group of people. though, who would be better of not being here. People with other disorders or people with clusters added to other disorders. The info in this MB may lead them astray, or prevent them from seeking the right help. Also there is a group of people nobody in their right mind would have here - the sellers of sham cures. nuff said for now |
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Title: Re: To belong or not to belong .. that is the ques Post by don on Nov 12th, 2002, 3:07pm Quote:
Oh JEEEEZE ELAINE! I thought we were going to keep that between us? |
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Title: Re: To belong or not to belong .. that is the ques Post by David Shea on Nov 12th, 2002, 3:11pm One Eye, I won't claim to understand your post completely. Just wanted to say, This is A great place to be, When your going threw A cycle. For me the help I got here was priceless. I was told by this board to see A neurologist. Something I never did in 27 yrs of suffering. STUPID! I know that now. We all here are supporters of our self and others in my view. And all here have different personalitys, When one is from Tauton, Southie, N.Y. California, Italy...etc. Those personalitys are going to be present in A discussion. On the hole, I hate to see any thing change here. I'm not trying to imply you or anyone here is trying to change it . So my opion is out there. And like "Mint" said noone gives A shit anyway...... PFDAN,David |
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Title: Re: To belong or not to belong .. that is the ques Post by Slammy on Nov 12th, 2002, 3:15pm on 11/12/02 at 14:38:09, Elaine wrote:
Damn, E! I always thought that that was a fringe benefit for Slammy! :D Slammy 8) |
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Title: Re: To belong or not to belong .. that is the ques Post by Elaine on Nov 12th, 2002, 3:17pm ROTFLMAO Don I am so glade I have you, cause you understand my spelling. In those sex chat rooms I get in big trouble because of it. |
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Title: Re: To belong or not to belong .. that is the ques Post by NotH20 on Nov 12th, 2002, 3:30pm Brad - you're post took me completely off guard! :) Thanks for the laugh at the end of my work day...... NotH20 |
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Title: Re: To belong or not to belong .. that is the ques Post by Margi on Nov 12th, 2002, 4:18pm ok, i'm working under a sleep deprivation handicap today, so forgive me. the REASON I get so adamant about EXPERIENCED supporters here is completely selfish. I was one of the first supporters here and I'll tell ya, I had to fight to stay here. Back then, it was pretty much just a board for sufferers. I didn't have ANYONE here who understood what I go through as a supporter. That changed over time...Drummer's wife, Laurie, started posting for a little while. Monique came along a little later. Jackie showed up. Ree came after that. Our supporters numbers grew. We began to find friends who understood what we go through, seeing our loved ones go to battle night after night, month after month, some of us (Jackie, and Laurie), year after YEAR. It felt incredible to find others like ourselves, let me tell you. It's an unspoken bond. Just like the clusterheads feel for each other. We've felt each other's pain. Now, you clusterheads have had each other from day one. We supporters are experiencing that same feeling now, when we meet each other. I had never talked to Bonnie Woods before the months before the convention. Our first telphone conversation? More than 2 hours. We just clicked and found immediate comradeship - an unspoken bond of 'honey, I KNOW what you go through, ok? you don't have to tell me.' To have 'supporters' come here as cheerleaders and groupies, is something that's quite difficult for the rest of us to swallow, therefore. We all look at each other and think 'why?' to us, no one actually CHOSES to be a cluster supporter - it's not exactly a walk in the park. We just do what we have to do to get through it. And then we have each other to fall back on when the attacks end for our loved ones. Inexperienced supporters can't relate to that feeling, nor can they give US any support. We supporters feel like war veterans sometimes and, trust me, we've earned our stripes. the hard way. To see others get accolades because they write well, and can memorize text typed in the archives ... well, it doesn't qualify them to be cluster supporters, in my book. There, I said it. Please direct all hate mail to moxie_miss@hotmail.com. p.s. and Nancy? that's the dictionary definition of a generic supporter. Here's my definition of a cluster supporter: one who has the ability to remain calm and collected while your loved one is writhing on the floor in pain you can't see or understand. one who can maintain a household and family, while your spouse becomes rendered completely incapacitated at unpredictable and most often, inopportune times. one who can open their arms and project unconditional love for their mates who can't control their outbursts because of this madness that is cluster headache. one who can go for weeks on end without regular sleep. one who knows when to be quiet yet also when is the right time to approach their sufferer just to let them know they are there. need I go on? ::) |
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Title: Re: To belong or not to belong .. that is the ques Post by don on Nov 12th, 2002, 4:21pm You'd be fighting with an army behind you now Margi. Unfortunately the army is wracked with pain, sleep deprived and on medication. LMAO |
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Title: Re: To belong or not to belong .. that is the ques Post by Margi on Nov 12th, 2002, 4:30pm Don? so are the supporters, honey. Ours is just different pain. And, I need to qualify something from that first post. I think Jackie might have arrived her before I did. But I'm much mouthier than Jackie is - she's a class act, that one. ;) Me? Not so much. |
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Title: Re: To belong or not to belong .. that is the ques Post by Jackie on Nov 12th, 2002, 4:31pm Margi, Once again dear lady....well said!!!! :) Seems that the clusterheads are protective of their turf and so are the tried and true supporters.... :D Jacks 8) |
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Title: Re: To belong or not to belong .. that is the ques Post by Margi on Nov 12th, 2002, 4:38pm See? I told ya. Jackie has more class in her little finger than anyone here. Jackie said, in one sentence, that it took me a novel to get out. It's a turf issue. It really is. Thank YOU, Mrs. Jackie. :-* |
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Title: Re: To belong or not to belong .. that is the ques Post by jonny on Nov 12th, 2002, 4:41pm I could wake you supportors.......<Zip> ;D ..........................(LMAO) jonny |
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Title: Re: To belong or not to belong .. that is the ques Post by Mark C on Nov 12th, 2002, 4:53pm A couple of random thoughts........................................... Clusterheadaches.com is what Google returned. There are much better MB than this one for sex........................ In my short time on this board it appears to be self policing for the most part. It is almost alive. If we had a "membership committe" to determine who is qualified would the original intent of the creation of the board be kept? I do not come to this MB for computer security issues, I have GRC.com for that, I come here because you all do. Most of my posts deal directly with CH, but as I get to know some of you that is changing. I believe that is a good thing. I know things about you and your familys and you mine. I have never posted a picture on the web, but I have here. So is it against the original intent of this MB for us share non CH material? I don't think so. There is a need for the "Clusterhead Nazi" to make sure posters adhere to the rules of pain and "our" way of expressing ourselves. It comes back to the purity of the message in this "Message" board. Why we are here is on the home page of the site. DJ is a wise man. If a true Clusterhead can be ran off from here over the pain of words, just how bad does their head hurt, or I am being inconsiderate. Try to run me off, I have paid my dues 10,000 times. If we have the ability to pontificate as we have on this thread might I suggest the MB is doing a fine job, my head has not hurt for a couple of weeks now. ;D And finally, everything is going to be OK. With love, Mark |
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Title: Re: To belong or not to belong .. that is the ques Post by jonny on Nov 12th, 2002, 5:11pm on 11/12/02 at 16:53:39, Mark C wrote:
ROCK-N-ROLL.........My Brother!!! ......................jonny |
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Title: Re: To belong or not to belong .. that is the ques Post by cerebus1968 on Nov 12th, 2002, 7:28pm one eye blind.... I am a newbie not only to this group, but to this malady as well, I'll tell ya straight up....I know very little about C.H. besides the fact that IT IS THE WORST PAIN IMMAGINABLE. beyond that, my limited episodic experience will serve little to anyones good until I have massed enough years of coping KNOWINGLY on the subject. So, mostly, I just try to offer an opinion or two and express my heartfelt sorrow - NOT PITY - for those who need relief. I was just officially diagnosed in the past month and prior to that I was told, and believed, I was suffering from mere acute sinusitis and had never even heard the words "cluster headache". and as a result went looking for more information and support than I was getting, which led me here. As it stands my main supporter knows more about this than I do and I am the sufferer so all I really know so far is that the pain is almost ......ok IS unbearable and that when the big ones hit I am worthless to the world until it subsides. So it goes that this site has been very good for me and I will continue to post and reply when I feel I need to and the purpose of the site in general has worked, at least in my case. To those of you who's opinions differ from mine.....sorry! I happen to have a number of "other" medical issues that just happen to be intensified by my CH and meds. But, I don't bother you good folks with those. Just because those problems existed -FOR ME - before my diagnosis, doesn't mean my CH doesn't exist. But , I agree with don. Those who belong here are sufferers and supporters, plain and simple. To imply or infer that because one does not know you or cannot feel your pain is well... stupid, those who are married to clusterheads or children of clusterheads etc. ARE suffering and just because it isn't in the same manner that we do doesn't mean it doesn't hurt equally as bad for them. It's called Love and compassion and that is the quality that should exclude you from the group if you don't have any. Captain R.D. Brown |
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Title: Re: To belong or not to belong .. that is the ques Post by Charlie on Nov 12th, 2002, 7:56pm Marc: There's a better MB for cybersex? Probably too much for me then. Elaine is wild enough for me....too wild. :o Marc used "pontificate." Geeze ::) Mean old Charlie |
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Title: Re: To belong or not to belong .. that is the ques Post by fubar on Nov 12th, 2002, 8:16pm on 11/12/02 at 17:11:02, Mark C wrote:
on 11/12/02 at 17:11:02, jonny wrote:
Classic. just classic. |
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Title: Re: To belong or not to belong .. that is the ques Post by RevDeFord on Nov 12th, 2002, 9:07pm My take on this is simple..... There are 3 groups of people who should be here contributing.... #1 - We who are the chosen, the ones who suffer from the CH nightmare, either chronic or episodic. #2 - People who have been personally touched by CH through a loved one who is suffering or has suffered from it. #3 - Neurologists and Doctors who come here to glean information for the patients they desire to assist. Anybody else can come and read for the gathering of knowlege, but should shut their pie hole otherwise. And for those who wonder if they have CH, I wish they would take the dadgummed survey. Some of these folks come in saying they have had a headache for 5 weeks make me wanna blow a head gasket. :o |
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Title: There is hope Post by pjbgravely on Nov 12th, 2002, 9:09pm One Eye Blind, Just letting you know that you are not alone. There are many hurting people who wander on to this site looking for help. They may have the diagnoses of CH or are looking for help with undiagnosed HA's. They are hurting and then get flamed for not having true Ch symptoms. There are others that( behind the scenes) pick up the pieces and try to help the hurting. Some are too hurt to be helped but others can be. Most won't step foot on this board again but some like Dtruett are caught in time before they are gone. If there are others that do the same please PM me and I will let her know that she is not alone. Thanks for your support. PJB |
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Title: Re: To belong or not to belong .. that is the ques Post by cootie on Nov 12th, 2002, 9:23pm I come here...maybe I shouldn't I dunno...cuz this is the FIRST time in over 15 yr's since this all started I have 'EVER' met or talk'd to 'ANYONE' that has went thru this CH hell.....or has a clue what it's like !!! Ta me it's like followin someone around ya really like....wether they want ya round 'r not ...oh hell whata I know....I found out what bein 'flamed' ment the hard way on here....I got the t-shirt....ha-ha....carry on.....a supporter that also suffers....and rambles when burnt out after it's all said 'n done....cuz I care.....flame on............ |
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Title: Re: To belong or not to belong .. that is the ques Post by ShariRae on Nov 12th, 2002, 9:25pm my feeling...for what it's worth is that if someone comes here to the board and doesnt "belong" as a sufferer or supporter..eventually they will tire of it & leave, especially if they are ignored once it is discovered. I personally have to admit that until I found this board, this site, I felt like I never fit in anywhere when in cycle or even trying to explain them to people. Here..I did fit in.. I was home. Eventually those that "dont belong" will not feel comfortable and leave. Huggzzz Shari |
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Title: Re: To belong or not to belong .. that is the ques Post by don on Nov 12th, 2002, 9:26pm Bottom line is there is only one delete button for this site and it sits solely under DJs finger. You rock DJ |
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Title: Re: To belong or not to belong .. that is the ques Post by cootie on Nov 12th, 2002, 9:33pm Shari : I agree with you !!! Well said.....I've always felt what we went thru was almost a deep dark family secret....somethin soothe'n in hearin others stories and enjoyin there good times also goofin off on here. I didn't think suma this crap ever happen'd to anyone else's family..... |
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