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Big Dan
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... anyone ever think this way?...
« on: Jan 6th, 2004, 12:37am »
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...  normally I wouldn't qustion my own thinking, since I'm always right Grin, but I've started to notice myself doing something that I'm honestly not very happy about...
 
... in seeing various commercials for all the different drugs on the market that are aimed at lifes little skin/hair/digestive/urinary tract/who the hell knows what problems that people have, I get this "eat me buddy, I've got clusters" attitude.
 
I know it's the worst pain known to man, and I'd get rid of it if I were given the chance... but I've got it, and at least for the moment, I'm stuck with it.  I've found my own ways of dueling the bastard, and when I need to, I can cope with him...
 
... anyway, what I'm trying to say is, are some of us getting this "we've got it worse, so everyone else should shut up, and piss off" attitude...?  
 
I think I am... and I'm a little ashamed of it...  
 
This isn't aimed at anyone other than myself... just some personal thoughts that I thought I'd share with everyone else, to do what they pleased with...
 
... and if you completely disagree with me.... I'll refer you to sentence 1 of this post... Grin
 
PFDAN's to everyone...  
 
 
 
 
-Big Dan
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Re: ... anyone ever think this way?...
« Reply #1 on: Jan 6th, 2004, 1:05am »
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Yeah, It just brings me to tears when I hear about someone who suffers from Athletes feet.  I wonder how do they deal with it ?
 
 Guess, I'm jaded too.    Linda
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Re: ... anyone ever think this way?...
« Reply #2 on: Jan 6th, 2004, 1:25am »
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Yeah I think it's normal to be that way ! I always get my thong in a wad when people get "air time" on the news to go on and on about how they have no electric cuz of a storm or sumthin to that order....or they have to boil there water a day before they can drink it cuz of a water main break !!!! 'They get air time for that'..... and you guys don't get shit for what you go thru..........I get so pissed and tired of the trivial whines on tv that I could SCREAM !!!! Pam that makes alot of bad couch comments to them tho no one hears  
 
I meant that I also dispise the woes of an itchy scalp and cold sore whines too on tv...ect ect ect trivial pain and suffering crap.......
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Re: ... anyone ever think this way?...
« Reply #3 on: Jan 6th, 2004, 1:26am »
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athletes foot is a little extreme, I see dans point and i think its a great one!  take people with terminally ill diseases, they could come to this site and tell us all to go fuck ourselves, yes we suffer from an almost unbearable pain, but we do not die from this pain!!!  
 
Nobody seems to want to look on the bright side here!!
 
Cheer up folks and give people a break!
 
If some poor kid has bad acne do you think to yourself, So what i have clusters? What the hell kind of attitude is that!  
 
In my opinion that sucks just as bad!!
 
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Re: ... anyone ever think this way?...
« Reply #4 on: Jan 6th, 2004, 1:36am »
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Hey Big Dan,
 
I'm guilty of the same.  I was mildly hit while at a racing event.  A few of the guys there came up to me ater the attack subsided and said they may not understand the pain factor but understood a little because they had migraines.  I wanted to scream and rant that migraines are nothing compared to what I have to deal with.  My fiance evidently caught the look on my face and took me aside to explain that they were only trying to show that they supported me.  I was so ashamed afterwards.  After all these guys were my cohorts and friends and I would have reduced them to quivering small children with a few scathing words if Toshi hadn't pulled me aside before it was too late.
 
The incident made me realize that I need to change my attitude or I may lose good friends because i blasted them while they were trying to support me.
 
Everyone's pain is different and what I can handle may be  beyond the scope of what someone else can handle.
 
Cheers,
April
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Re: ... anyone ever think this way?...
« Reply #5 on: Jan 6th, 2004, 1:55am »
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I hears ya big dan,
 
I get the same way, and as you said I get a little ashamed of myself.  
 
But like every illness/condition I think this is a natural defense mechanism to help cope.
 
However as above you  need to keep aware when people are trying to help and take it easy on them, I let those that critise and redicule cop a verbal caning.
 
 
Turts Grin
 
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Lizzie2
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Re: ... anyone ever think this way?...
« Reply #6 on: Jan 6th, 2004, 6:51am »
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Hey Big Dan,
 
I'm really glad you posted this.  I suffer from a few rather disabling conditions, despite the fact that I still go to school and lead as "normal" a life as possible.  The CH definately ranks the highest as far as causing my headache pain.  However, I can't neglect the pain of my New Daily Persistent Headache, my fibromyalgia, or my IBS or whatever else is always popping up.  
 
The commercials that always seem to annoy me the most are the botox commercials to get rid of wrinkles!  After having botox 3 times for headache treatment...I can't see why ANYONE would actually want to pay that much money and suffer through it for temporary relief of a few wrinkles!
 
A little story about comparing pain though.  My mom's cousin has lost 3 children...one died at birth, one was hit by a car when riding his bike, and the other was shot by his best friend with a supposedly unloaded gun.  She was divorced, and she has 2 children still doing fine from the first marriage, but she has 2 children from the new marriage with cystic fibrosis.  Every time things got hard for my mom and my family, my grandma would say, "Look at Kathy...at least you don't have her life."
 
That used to upset my mom so much.  Pain is so relative.  Those who suffer from clusters know that it is the worst pain imaginable.  Those who suffer from only migraines feel that it is the worst pain imaginable to them.  They don't know the difference.  Everyone's pain tolerance is different.  I know before I ever got a CH, I thought my head couldn't hurt much worse than it does with the NDPH, but the cluster attacks take it to a new level.  However, the NDPH never ever leaves.  
 
So I've kind of made it my personal mission not to compare pain of diseases and conditions.  I worked in an inner city ER over the summer, and when people would come in with little stuff and be very upset about it...well it was just that to them, that was a crisis or a big pain.  They just may not have been very pain tolerant.
 
I think it is understandable to feel that because they haven't suffered a ch, they don't really know what pain is, however, some people have survived some mighty huge pain out there themselves.  I honestly don't like comparing types of pain because everybody's pain tolerance is different.  
 
What I would like to do....is get rid of all pain altogether!! Smiley
 
Who's with me?  Come on!! hehehe Wink
 
~Lizzie Smiley
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Re: ... anyone ever think this way?...
« Reply #7 on: Jan 6th, 2004, 7:31am »
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I feel the same way at times Big Dan, however I really do feel sorry for others that have bad conditions.  I guess it's just my big heart.  Pain sucks, but pain wont kill ya.  ( I think somebody said that once or twice here already)
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Re: ... anyone ever think this way?...
« Reply #8 on: Jan 6th, 2004, 7:37am »
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Depends whether I'm in cycle or not.
When in cycle like now I find myself despising people with 'minor' ailments and wanting to say "I'll swop you any day you tosser!"
 
Most of the time I try and remember that I'm lucky it 'aint terminal.
 
But I do know what you mean Big Dan!
 
 
Wendy
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Lizzie2
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Re: ... anyone ever think this way?...
« Reply #9 on: Jan 6th, 2004, 8:01am »
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Hi everyone...I don't know if I've posted the Oprah article about chronic head pain on here or not.  The woman had been suffering from chronic daily migraine, migraine, and clusters.  It talks about pain...how she deals on a daily basis...and also the fact about how hard it is to suffer through this endlessly but also to know that it won't kill you.  Sometimes that in itself can be an overwhelming though!  You are so much pain indefinately, but it isn't going to cause your death.  It almost seems cruel...like giving a criminal 2 life sentences or something.  Anyhow, I don't know if I posted this already, but here's the link.  (i know the article focuses most on migraines...don't flip out though!!  it really does apply to living with severe and constant headache pain....everyone just has different coping mechanisms, and the article seemed really positive to me...I've posted it on a few other boards with good responses)
 
http://www.oprah.com/health/omag/health_omag_200309_pain.jhtml
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Re: ... anyone ever think this way?...
« Reply #10 on: Jan 6th, 2004, 8:22am »
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Hey Big Dan,
     I'm with ya. It is not that I denegrade the pain of others, it' more like " I have my own pain, I deal with it,now deal with yours"
  I have absolutley no patience for people who won't take any steps to help themselves. For example, my mother has severe back problems, but she refuses to take any pain meds. But boy can she bitch and put on the pity me face. Bite me! There is help sitting on your kitchen cabinet. I'll even get it for you. Help yourself or don't expect any damn sympathy from me.  
  Sorry for the rant. But it felt good to get that of my chest.
 
Christine
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Re: ... anyone ever think this way?...
« Reply #11 on: Jan 6th, 2004, 8:23am »
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Man, I really do sound bitter
Christine
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Re: ... anyone ever think this way?...
« Reply #12 on: Jan 6th, 2004, 8:46am »
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Okay, that is exactly how I feel when I am in cycle.  I get extremely annoyed when I see a PSA for irritable bowel syndrome.  I would much rather shit than have a CH.  Why don't we have PSA?  I know there are tons of people out there suffering who have never had the right diagnosis.  
 
I do however feel blessed that is only CH and not a tumor or something terminal.  That is when I count my blessings.
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Re: ... anyone ever think this way?...
« Reply #13 on: Jan 6th, 2004, 9:01am »
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i really dont feel that way, but thanxs to this post, im gonna start....lol, just kidding...my biggest frustration is with the lack of understanding people have about CH...its not their fault i just wish the whole world could walk in my shoes for just one day, especially evil people..i wonder if hitler or saddam would of turned out the way they did if they knew what "pain" really was all about...i think this CH maddness makes me a better person in that i suffer pain....sadistic attitude maybe...my headaches for the last week have been unreal, but the good news is that i quit smoking 5 days ago and will use this episode to make myself change 1 negative thing in my life..
 
It's not that you're not good enough
It's just that we can make you better
Given that you pay the price
We can keep you young and tender
Following in the footsteps of a funeral pyre
You were paid not to listen now your house is on fire
Wake me up when things get started
When everything starts to happen
My features form with a change in the weather
Some of us horrified
Others never talk about it
But when the weather starts to burn
Then you'll know that you're in trouble
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Re: ... anyone ever think this way?...
« Reply #14 on: Jan 6th, 2004, 9:27am »
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I know exactly how you feel, but maybe the other end of the scale too. Sometimes I feel like I don't even have a right to be on this board because I haven't suffered enough. I don't voice my opinions because I think all of you who have suffered for so long would be like...."c'mon, what the hell does she know....she's had like what, TWO cycles".......... And NOT because any of you have EVER made me feel that way - it's just the way I feel.  You guys are the greatest bunch of people I know and that's what keeps me coming back.  Helps me to prepare for the next round!  Grin
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Re: ... anyone ever think this way?...
« Reply #15 on: Jan 6th, 2004, 9:31am »
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Yea, everytime i see a tylenol commercial and some guy is squinting his eyes and holding his head, and in cuts the promo for Tylenol. I just wanna slam that fugger with a CH and ask him if the tylenol is working now!
 
Patrick Grin
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Re: ... anyone ever think this way?...
« Reply #16 on: Jan 6th, 2004, 9:36am »
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hey chmess....i only wish i knew about this site earlier (ive suffered episoic for 25 glorious years), its already changed my life for the better...take advantage of the wisdom of the people here...
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Re: ... anyone ever think this way?...
« Reply #17 on: Jan 6th, 2004, 9:40am »
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on Jan 6th, 2004, 9:36am, hunterdon04 wrote:
hey chmess....i only wish i knew about this site earlier (ive suffered episoic for 25 glorious years), its already changed my life for the better...take advantage of the wisdom of the people here...

 
Don't worry, I am taking advantage of it - that's why you see me here lurking all the time Grin
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Re: ... anyone ever think this way?...
« Reply #18 on: Jan 6th, 2004, 9:55am »
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on Jan 6th, 2004, 9:27am, CHmess wrote:
I know exactly how you feel, but maybe the other end of the scale too. Sometimes I feel like I don't even have a right to be on this board because I haven't suffered enough. I don't voice my opinions because I think all of you who have suffered for so long would be like...."c'mon, what the hell does she know....she's had like what, TWO cycles".......... And NOT because any of you have EVER made me feel that way - it's just the way I feel.  You guys are the greatest bunch of people I know and that's what keeps me coming back.  Helps me to prepare for the next round!  Grin
Dont ever feel like your opinion doesn't matter,it does. You suffer, you deserve support, and we want to hear how you're doin.... Smiley
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Re: ... anyone ever think this way?...
« Reply #19 on: Jan 6th, 2004, 10:14am »
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on Jan 6th, 2004, 9:55am, thomas wrote:

Dont ever feel like your opinion doesn't matter,it does. You suffer, you deserve support, and we want to hear how you're doin.... Smiley

 
Thank you for that Thomas, you are the sweetest!!  Wink
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Re: ... anyone ever think this way?...
« Reply #20 on: Jan 6th, 2004, 10:54am »
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bottom line is this:  If we didn't suffer from clusters, would we go out of our way to educate ourselves on them? NO! So we can't blame anyone for not knowing about this pretty rare form of headache!!
 
Best wishes to all!!
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Re: ... anyone ever think this way?...
« Reply #21 on: Jan 6th, 2004, 12:33pm »
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I don't know if people would never go out of their way to educate themselves on ch if they didn't have it.  I had a friend who used to want to know about every kind of headache just because he was interested in learning and doing everything he could to help.  He suffers from episodic migraines.
 
I remember a story I heard once about a boy with cystic fibrosis.  He asked his mom why they put all this effort into researching pediatric cancer, but nobody ever knows about CF or does much to help support it.  It is the leading genetic killer of caucasian children.  However, again it affects such a small part of the population.  Cancer is huge in comparison.  It is hard when the one thing you want to gain education, research, and the like for is not very available because there aren't as many sufferers as their is for another disease.
 
Oh and P.S....don't take those commercials about IBS to heart...they are so full of crap...That's not what it feels like at all.  
 
The excedrin tension headache and excedrin headache commercials really do piss me off though.  GRR
 
I feel like I look over both sides of the issue on this one...part of me does get angry, but part of me feels great sympathy for people who really are suffering from some big stuff too.  I don't know what to think sometimes!
 
Lizzie Smiley
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Re: ... anyone ever think this way?...
« Reply #22 on: Jan 6th, 2004, 1:08pm »
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I also have found myself thinking this way......until something comes along to wake me up. Like my last visit to my neurologist....while waiting for the checkout  clerk to get my paperwork together, a young couple was escorted to a examination room....the woman was sobbing and the man was clutching a x-ray folder. One knows that could not be good....at all.
 
My attitude took a 180% turn right there.....
 
Bill
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Re: ... anyone ever think this way?...
« Reply #23 on: Jan 6th, 2004, 2:07pm »
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I do feel really sorry for men with erectile disfunction, though...those ads make me weepy with sympathy...  
 
 
 
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(Work is boring at the moment...sorry...)
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Re: ... anyone ever think this way?...
« Reply #24 on: Jan 6th, 2004, 2:40pm »
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We all have our good days and bad days....
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