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E-Double
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Patience and Compassion
« on: Jan 19th, 2006, 5:54pm » |
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There are many who come here that do not have CH thank god.
There are also some individuals who come here that may not present with all headbangers and have been driven away.
Well, I made a new friend from this board.
A guy came here looking for info when he was diagnosed. He rarely has a headbanger yet presents with all of the other stuff CHers get.
The dude was eventually told to F-off and to die and was ran off as he was considered and called a troll when he asked certain questions and bit back.
He didn't ask to be a member of the CH club but he is.
Anyway, I thought that he presented with some additional variants and convinced him to make an appointment with my doctor @ NECH.
You all know that Dr. Sheftell and his partners are 3 of the leading doctors in trying to find us relief.
They are also super personable and compassionate.
To make a long story a bit shorter, my buddy's diagnosis of CH was upheld by Dr's Sheftell and Rappaport.
We CHers have to deal with what is known as one of the most painful syndromes that one can endure.
However, there are some that do not scream for death or have not experienced anything over a "Kip7" and WE should be careful not to run everyone off who does not completely fit the classic mold.
Be well,
Eric
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vig
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Re: Patience and Compassion
« Reply #1 on: Jan 19th, 2006, 6:31pm » |
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We probably don't need to run ANYONE off.
Even if they don't have CH, they can learn about it and spread the word. We'd all benefit and probably make more friends that way....
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Guiseppi
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Re: Patience and Compassion
« Reply #2 on: Jan 19th, 2006, 7:04pm » |
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Very well put Eric, I wish I had your gift of prose!
Guiseppi
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Karla
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Re: Patience and Compassion
« Reply #3 on: Jan 19th, 2006, 7:10pm » |
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Well said!
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Karla
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nani
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Re: Patience and Compassion
« Reply #4 on: Jan 19th, 2006, 7:52pm » |
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 EE
Well said, viggles.
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Sean_C
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Re: Patience and Compassion
« Reply #5 on: Jan 19th, 2006, 8:54pm » |
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http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;a ction=display;num=1135570988
Eric I love you like a brother, and I wish you'd remove that paragraph that states we are not kind or considerate people. Please reread Burts condition as he descibes it. If this is a clusterheadache we can acknowledge 200 million others to this website as well, and we will if this is the criteria now. I however do not believe he discussed his condition with NECH as he did here or else I think they might have developed a different theory as we did.
Burt was offered advice, compassion and everything else that goes along with it till the nastey e-mails started and everything else. Not in one post did I see a death threat or wish of death by anyone here.
Your a good friend to me and I know in your heart you are a friend with Burt, I just don't think in this case we should be bashing us.
I'm sorry for your friends diagnosis,
Sean....................................
(sp)
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| « Last Edit: Jan 19th, 2006, 11:46pm by Sean_C » |
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purpleydog
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Re: Patience and Compassion
« Reply #6 on: Jan 19th, 2006, 9:38pm » |
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on Jan 19th, 2006, 5:54pm, E-Double wrote:
The dude was eventually told to F-off and to die and was ran off as he was considered and called a troll when he asked certain questions and bit back. |
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I think Eric was not being literal here (bold). We have told plenty of people to get lost. Especially when someone bites back, and we don't like it.
Quote:| To make a long story a bit shorter, my buddy's diagnosis of CH was upheld by Dr's Sheftell and Rappaport. |
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We aren't doctors here. The docs don't have CH. We have all the experience, but I think these docs have an idea of what we go through, and they see all levels of this condition. And they get as much information, as I know Eric would agree with, as they can as objectively as they can.
Quote:We CHers have to deal with what is known as one of the most painful syndromes that one can endure.
However, there are some that do not scream for death or have not experienced anything over a "Kip7" and WE should be careful not to run everyone off who does not completely fit the classic mold. |
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Agreed.
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MJ
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Re: Patience and Compassion
« Reply #7 on: Jan 19th, 2006, 10:10pm » |
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You mean this guy. How old was he 7 and a 1/2.
Quotes from cardogman -
"Hey Big Man king of the place Johny
Johny King of the Place here he comes Big Man Johny with the big Mouth."
"Big Man Sean with little Man language. Listen Bro I spend most of my life in the Operating Room. I know more about medicine and probably this cluster thing then most. You are absolutely wrong about the pain of CH."
"Lets re-name the disorder the Seanache and he can be the President of his own Malady. lololololololololololololo
Oh please help me with my seanaches. I have such a terrible problem lololololololololololololololololololololo"
"Hey Granny since your a lady I won't repeat what this guy said to me."
And the list goes on. I just reread that thread within hockeyheads and noone said he did not have CH, but due to the fact that he had all day long milder headaches some very good advice to look into was offered to him by some here and he became a very beligerant and obnoxious fella.
Surprisingly Jonny was exceptionally nice.
I am sorry for his diagnosis too but when my kids got like that I made them sit in their room untill they could act their age.
Burt did have some quality questions and input in other threads and he can come out of his room now.
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MJ
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Sean_C
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Re: Patience and Compassion
« Reply #8 on: Jan 19th, 2006, 10:21pm » |
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I agree with this thread title PD, I just don't think what Burt described there was a CH at all, none of it.
I appologise to Burt, and I appologise for others who I brought into it. The blame should fall on me 
I'm definately no doc, I'm just a kid with CH, and as Eric said we all suffer differently and I should know that. I guess I fucked up, I'm sorry Burt, what else can I say
Sean...................................
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purpleydog
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Re: Patience and Compassion
« Reply #9 on: Jan 20th, 2006, 12:42am » |
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Sean, you are not to blame and you didn't fuck up. Everyone has an opinion, and there is nothing wrong with yours. Not a damn thing.
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BMoneeTheMoneeMan
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Re: Patience and Compassion
« Reply #10 on: Jan 20th, 2006, 12:54am » |
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I never read that thread before. What a fuckin shame.
I know i am not the most well liked person here, most would not even consider me part of the 'family', but thats fucked up to treat someone like that.
Its a good thing it seems Burt didnt suffer too badly from his clusters or whatever affliction he has. My god, if this person was a bad sufferer and stumbled into this board out of desperation, who knows what could have happened?
please.
be nice.
even if someone else isnt being nice.
BMonee
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"Fool me once, shame on, shame on you. Fool - can't get fooled again"
Think of how stupid the average person is, and then realize half the population is stupider than that.
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sandie99
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Re: Patience and Compassion
« Reply #11 on: Jan 20th, 2006, 2:33am » |
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Personally, I feel for everyone who suffer. And I do think that people have different kind of tolerance for pain, which we should respect. I, for one, rarely let people know how much I hurt if I can possibly keep it as a secret - which naturally means that even my family doesn't get how bad ch can get.
I'm sorry to hear that someone who suffers from ch is now scared to come here. I hope that can be changed. And I do agree with Paul that even those who don't have ch have a reason to be here - to learn more and educate others about this terrible beast. I would give a lot if I could get my family and friends visit ch.com... but that makes me appreciate more of those who are willing to learn more about ch.
Let's make this a place where both sufferers and non-sufferers can communicate together in peace.  And I haven't made any distinctions between people who post here - you're all part of my ch family.
Sanna
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| « Last Edit: Jan 20th, 2006, 3:22am by sandie99 » |
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CH happends, Live anyway! PF days to us all!
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E-Double
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Re: Patience and Compassion
« Reply #12 on: Jan 20th, 2006, 3:11am » |
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All I can say is that I left out names and true specifics for a reason.
I do not go there out of respect.
If one went through the situation, one would know.
I'll tell you this.
There is no way after a 5 hour medical, psychological, Everyological  exam at NECH things would be diagnosed by 2 more docs incorrectly.
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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E-Double
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Re: Patience and Compassion
« Reply #13 on: Jan 20th, 2006, 3:13am » |
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on Jan 19th, 2006, 10:21pm, Sean_C wrote:I agree with this thread title PD, I just don't think what Burt described there was a CH at all, none of it.
I appologise to Burt, and I appologise for others who I brought into it. The blame should fall on me
I'm definately no doc, I'm just a kid with CH, and as Eric said we all suffer differently and I should know that. I guess I fucked up, I'm sorry Burt, what else can I say
Sean...................................
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IT WAS NOT YOU SEAN!!!!
I'll leave it at that and check your PM
Another reason I don't pin point.
Hugs my friend!
To quote our Arizona brother.......
Your brother in pain,
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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E-Double
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Are we ourselves?
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Re: Patience and Compassion
« Reply #14 on: Jan 20th, 2006, 3:33am » |
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on Jan 19th, 2006, 8:54pm, Sean_C wrote:
Eric I love you like a brother, and I wish you'd remove that paragraph that states we are not kind or considerate people. Sean....................................
(sp)
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I'm not sure where you are referring to for I would not write that
but know that I love you my brother!!!!!
This is the last I will address this and I hope that it is not something that becomes a 10 page bi tch fest because I will not participate and a good heartfelt message would be lost.
My friends this was not to a specific individual.
That is why names were not presented.
I think it is a good rule of thumb.
That's it
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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BarbaraD
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Re: Patience and Compassion
« Reply #15 on: Jan 20th, 2006, 6:30am » |
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Eric,
I think your post was heartfelt and RIGHT. We should never try to second guess anyone who comes here. People come here for HELP - that's what we're all about and we should remember that.
Sometimes we say things (type them) and they come out wrong and one thing leads to another. Over the years (and yep I've been here since the first load of dirt was moved into Clusterville) people have been saying things and others have been getting their noses out of joint because of what they said.
I'm sorry that anyone has to suffer from Ch, but one thing I've found over the years - we all are different and react differently to these monsters. Please tell your friend to come back and we'll all play nice.
Hugs BD
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PollyPocket
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Re: Patience and Compassion
« Reply #16 on: Jan 20th, 2006, 7:03am » |
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on Jan 19th, 2006, 6:31pm, vig wrote:
Even if they don't have CH, they can learn about it and spread the word. |
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Perfectly said.
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chewy
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Re: Patience and Compassion
« Reply #17 on: Jan 20th, 2006, 7:51am » |
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Here's something else that was perfectly said long befor that was.
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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Cathi04
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Re: Patience and Compassion
« Reply #18 on: Jan 20th, 2006, 8:33am » |
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Sometimes, when I read posts from people who have recently arrived, I watch. Their first posts are quite sincere, grateful, loaded with statements and questions about CH........they are, just like everyone else, looking for the "norm".well, we all know, put 5 CHers in a room, NOONE will present the same way. However, what this does, as the newbie delves further and further, it seems that the replies become abrasive, and that puts our newbies on the defensive.
YES, this place is devoted to CH sufferes and supporters.
But I think, as the 'already here group', we have a responsibility to be polite to any and all who land here. The snake oil salesmen and trolls and such will cull themselves out, and, if a bona-fide CH'er gets abrasive, he/she should be straightened around....coz, ya know what??
NOONE DESERVES TO BE JUDGED OR ABUSED !!!!!!!!!!!!! (even trolls....cant you just ignore them>???)
Think about how YOU would like to be treated..it's actually pretty simple, it's the Golden Rule.do unto others as you would have them do unto you.
Eric, thank you for bringin this up, Burt....I never met you, I'm so sorry you suffer CH's. Please, come back to join the gang, and let us ALL try this again-NICELY!
Cathi
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nani
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Re: Patience and Compassion
« Reply #19 on: Jan 20th, 2006, 8:34am » |
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In this case, it became a battle of wills. Burt bit back, and became more interested in being right than being helped (IMHO). People do that when they're put on the defensive, though.
We know a lot about CH, probably more than a lot of doctors, it's true. But I hope we've learned that every sufferer does not suffer exactly the same way, and that getting sarcastic and sometimes even hateful (not you, Seannie) does not serve us (or certainly the other person) well.
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chewy
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Re: Patience and Compassion
« Reply #20 on: Jan 20th, 2006, 9:52am » |
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Quote:and let us ALL try this again-NICELY!
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Bite me.
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Cerberus
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Re: Patience and Compassion
« Reply #21 on: Jan 20th, 2006, 9:53pm » |
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A generally unspoken rule of this MB (gotta have a thick skin). So, If we were wrong we were wrong...lesson learned. Move along, next?
Just my observation,
'Bus
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Sean_C
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Re: Patience and Compassion
« Reply #22 on: Jan 20th, 2006, 11:42pm » |
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This is my last post to this, but somebody sent me this today and I thought it was something worth sharing here.
Peace
Sean........................................
THE BRICK
A young and successful executive was traveling down a
neighborhood street, going a bit too fast in his new Jaguar. He was watching for kids darting out from between parked cars and slowed down when he thought he saw something. As his car passed, no
children appeared. Instead, a brick smashed into the Jag's side door! He slammed on the brakes and backed the Jag back to the spot where the brick had been thrown. The angry driver then jumped out of the car, grabbed the nearest kid and pushed him up against a parked car shouting, "What was that all about and who are you? Just what the heck are you doing? That's a new car and that brick you threw is going to cost a lot of money. Why did you do it?" The young boy was apologetic. "Please, mister...please, I'm sorry but I didn't know what else to do," He pleaded. "I threw the brick because no one else would stop..." With tears dripping down his face and off his chin, the youth pointed to a spot just around a parked car. "It's my brother, "he said. "He rolled off the curb and fell out of his wheelchair and I can't lift him up."
Now sobbing, the boy asked the stunned executive, "Would you please help me get him back into his wheelchair? He's hurt and he's too heavy for me." Moved beyond words, the driver tried to swallow the rapidly swelling lump in his throat. He hurriedly lifted the handicapped boy back into the wheelchair, then took out a linen handkerchief and dabbed at the fresh scrapes and cuts. A quick look told him everything was going to be okay. "Thank you and may God bless you," the grateful child told the stranger. Too shook up for words, the man simply watched the boy push his wheelchair-bound brother down the sidewalk toward their home.
It was a long, slow walk back to the Jaguar. The damage was very noticeable, but the driver never bothered to repair the dented side door. He kept the dent there to remind him of this message: "Don't go through life so fast that someone has to throw a brick at you to get your attention!" God whispers in our souls and speaks to our hearts. Sometimes when we don't have time to listen, He has to throw a brick at us.
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BMoneeTheMoneeMan
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Re: Patience and Compassion
« Reply #23 on: Jan 20th, 2006, 11:58pm » |
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I would have beat that kid's ass senseless. You dont throw a brick at a Jag.
Even if the kid in the wheelchair threw the brick, i would still beat his ass.........with patience and compassion
BMonee
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Think of how stupid the average person is, and then realize half the population is stupider than that.
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Linda_Howell
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Re: Patience and Compassion
« Reply #24 on: Jan 21st, 2006, 12:04am » |
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I do believe that ever since I've been here (1998/99)
This is one of the most thoughtful, well-written, civil, and NICE responses to something that COULD have gone alll wrong.
THANK YOU CLUSTEROPOLIS!!!!!!!!
See DJ......we're all evolving.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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