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Topic: The Family (Read 1065 times) |
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Magick
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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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forgetfulnot
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Quote:| Translation: PORN PORN PORN!! |
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Thehun.net ........................
Lee
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Renee
CH.com Alumnus
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May we all find some pf time! Is it summer yet?
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Re: The Family
« Reply #2 on: Jan 14th, 2005, 7:43am » |
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Very nice post Magick!
I especially like the last sentence.
thanks 
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| « Last Edit: Jan 14th, 2005, 7:44am by Renee » |
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Jeepgun
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Well said, Magick.
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Roxy
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Re: The Family
« Reply #4 on: Jan 14th, 2005, 9:05am » |
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Quote:| This site is devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches! |
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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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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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don
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Quote:| They condemn anyone who has migraines. |
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For the most part they are refered to a site that is more appropriate to their needs.
Quote:| They quickly testify that their pain is far worse then another clusterheads. |
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Show me ONE quote to that effect.
Quote:| If a migraine sufferer post they are told that they are girl thingy’s and to go away. |
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Dead wrong.
Quote:| 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. |
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Read the sign on the front door.
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Kevin_M
CH.com Alumnus
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withered branches grow green again.
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Re: The Family
« Reply #6 on: Jan 14th, 2005, 9:34am » |
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on Jan 13th, 2005, 9:10pm, Magick wrote:| Someone who suffers from normal headaches all the time is experiencing pain too. |
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But this is CH.com
Quote:| Should we also not be the most compassionate towards all forms of pain? |
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For those who have CH or are a supporter, the concerns run pretty deep.
Kevin M
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: The Family
« Reply #7 on: Jan 14th, 2005, 10:00am » |
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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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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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don
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Quote:| If you suffer from, or live with/love/care about someone who suffers from, Cluster Headaches, this is THE place for you! |
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I see nothing about migraines or amputations in that line.
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Margi
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Re: The Family
« Reply #9 on: Jan 14th, 2005, 11:24am » |
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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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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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ExplodingEyeBall
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Re: The Family
« Reply #10 on: Jan 14th, 2005, 11:32am » |
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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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Just poke out my eye and get it over with!!!
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BarbaraD
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Hugs to ya
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Re: The Family
« Reply #11 on: Jan 14th, 2005, 11:41am » |
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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 
Hugs BD
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What don't kill ya, Makes ya stonger!
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don
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Quote: I don't think Magick intended to start WW111 - just stated an opinion.
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And I rebutted it with mine as I always will when someone criticises the intent of this site.
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nani
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Re: The Family
« Reply #13 on: Jan 14th, 2005, 12:04pm » |
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Quote:| I don't think Magick intended to start WW111 - just stated an opinion. |
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I agree...unfortunately, that can happen here. If you state an opinion, you start WW III.
Quote:| None of us is Sally Sunshine all the time |
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I'm not ?!?!?! shoot...I better go find some more of those um..."happy sunshine" pills
Quote:BTW: This place is starting to look like a real family.
A dysfuncional family |
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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  love to you, nani
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Others may come and go, but MY power is MINE.
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don
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Quote:| I agree...unfortunately, that can happen here. If you state an opinion, you start WW III. |
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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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| « Last Edit: Jan 14th, 2005, 12:11pm by don » |
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Jeepgun
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I see your point as well, Don.
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Kevin_M
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Re: The Family
« Reply #16 on: Jan 14th, 2005, 12:32pm » |
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on Jan 14th, 2005, 12:10pm, don wrote:| especially when it effects the integrity of CH.com |
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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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don
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Quote:| "devoted completely and exclusively" |
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So what is it people dont get about that ?
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Big Dan
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SMASH BRAIN!
  
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Re: The Family
« Reply #18 on: Jan 14th, 2005, 1:14pm » |
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on Jan 14th, 2005, 12:56pm, don wrote:
So what is it people dont get about that ? |
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apparently everything.
-Big Dan
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Not going anywhere for a while?...
... Grab a Snickers, Fatass.
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Magick
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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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Kevin_M
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Re: The Family
« Reply #20 on: Jan 14th, 2005, 6:02pm » |
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on Jan 14th, 2005, 4:48pm, Magick wrote:| Criticism? No just a subjective observation. |
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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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CC2004
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Re: The Family
« Reply #21 on: Jan 14th, 2005, 6:27pm » |
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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
CC
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tenacious
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Re: The Family
« Reply #22 on: Jan 14th, 2005, 7:51pm » |
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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.  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?
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Jonny
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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!!!! 
What say you Don?
................jonny (YOUR KING!!! ;D )
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Ree
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Re: The Family
« Reply #24 on: Jan 14th, 2005, 8:27pm » |
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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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