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Topic: Words about clusters and the boards.... (Read 1200 times) |
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Roxy
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Words about clusters and the boards....
« on: Jan 5th, 2004, 9:20pm » |
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This was posted on the meds board by pinkfloyd, but I thought it should be posted over here…where more people might read it. Just thought it was some good words of wisdom. I hope you don’t mind me copying and pasting pink….if so, I apologize.
People can flame me if they want (it's useless BTW) but you certainly aren't going to find a "cure" on the other side unless someone links you here. It isn't just about being able to supply new information about treatments. I can't understand how people are willing to spend hours online in the "general chat" area and never stop in here to see if there is anything new that could help them. I know there are people there complaining that nothing is new and there is nothing out there that will ever help them. They have given in to the notion that they will live with clusters, all their life, with no hope of a better treatment. We may all be dead and gone before a true cure is found, but it may be tomorrow that someone posts something here that will dramatically improve their lives.
The discussions here by people that explain their cycles, their symptoms, how they react (or don't react) to different meds is ESSENTIAL to finding out the origin of clusters. I'm sure you've heard the old saying..."and a child shall lead them".....for people to do proper research,,,,,they need data!!!
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It bothers me to know there are people that are happy to fill out every poll there is about football teams, songs, the size of their....monitors, and haven't stopped by this side for months....years??....to see the research that is being posted here almost every day. And...I'm not just speaking about shrooms.
I see that there are people now that don't even want to look at what other's have to suffer through. Well, I hope that someone else they love or care about doesn't come down with clusters while their heads are stuck in the sand. There is NO good time to give up. There is no such thing as not being able to contribute. Every "that didn't work for me" is just as important (or more so) as every "that did work for me!"
When cluster patients give up looking,,,they do a great disservice to the "cause" as a whole and to themselves individually. Their doctors keep getting requests for the same medications, thinking that they are happy with reducing their attacks to three a day. Or, they disappear from sight and that doctor thinks...hey, the lithium works...he's probably getting it from his GP. All that does is reinforce in the medical community that there are adequate treatments available for all cluster sufferers. There aren't, as you know.
It's ok to come to terms with the condition and how it may affect your life. It's ok to devise a plan to make as much of a life as possible. We should all do that. It's not necessary to stop looking for something better. It pushes the medical community to find something for everyone. Giving up on yourself is like giving up on all of us, which includes future generations in their own families.
If you've tried all the meds and they either don't work or make things worse......there are many "other" remedies that are being looked at.
Finding out that Vitamin "Z" cuts down on the pain for thousands of cluster sufferers will not be found by someone that has given up looking.
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BlueMeanie
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Re: Words about clusters and the boards....
« Reply #1 on: Jan 5th, 2004, 9:31pm » |
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That's great that you posted Pink Floyd's comments on the general board just in case someone doesn't look at the other one.
I personally look at both all the time hoping to find something new and/or commenting about what people have tried.
The general board, at least to my assumption, is to talk to others about anything that will keep us distracted from this painful condition. I think it's great to mix it up with Football or whatever else we want. Clusters are definitely #1 priority, but humor and fun takes some of the pain away mentally at least. We're all here because of clusters. The Beast reminds me everyday about cluster headaches.
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Charlie
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Re: Words about clusters and the boards....
« Reply #3 on: Jan 5th, 2004, 10:54pm » |
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Pretty good.
I'm guilty of not looking around more. I think a lot of us though do a 180 from the nonsense when someone asks a question or something relevant pops up.
It's a good point though. We can sharpen our focus a bit more.
Charlie
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Cerberus
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Re: Words about clusters and the boards....
« Reply #4 on: Jan 5th, 2004, 11:20pm » |
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Pink is SO VERY RIGHT!
I admidt, I have tended to slack a bit in checking the ENTIRE CH community. Being episodic I have a Im sure is a Natural tendency to "forget" to do what he so emphatically pointed out.
Yes I go to chat (albeit) less frequently latetly more or less am trying to focus my energy into my personal life's little mysteries AND try to lend a hand in support of those who reside here and suffer chronically or episodically alike, while also helping to guide and welcome newcomers and smite those who would harm the "Family". Little attention to what Pink said in his post, I respect the man a great deal, however, to put aside the pure nurturing going on over the entire site especially the MB and and Chat discrediting its value due to lack of attenion to keeping up with the current reaserch or even the goings on in the organizations politics IS a bit disconcerting.
I plead on behalf of the MB and Chat that its value to all of us including you , pink, that its value is to the organization is VITAL . It brings us together from all over the world to sympathise and share new ideas with coping. It really does put the word out on a grass roots level relatively effectively. O.U.C.H. is still very flegeling as far as buisiness goes. and has had great success in enlisting people who are sudying CH at new levels. But, the REAL benefit is to "US" it is a refuge to people who really understand and ACTUALLY CARE ABOUT YOU. That is invaluable alone. to help each other in dire need by supplying every facet of the human emotions. This place is the most facinating thing I've ever encountered. It shows in text, the most humanest things about Humanity itself, and MOST of it is positive. That is quite a feat, for ANYONE let alone any group of people.
Thanks Pinkfloyd for originally posting it.
Ramon
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| « Last Edit: Jan 5th, 2004, 11:26pm by Cerberus » |
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CC
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Re: Words about clusters and the boards....
« Reply #5 on: Jan 6th, 2004, 12:16am » |
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Thanks for the eye opener, Your absolutly correct!!!
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Linda_Howell
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Re: Words about clusters and the boards....
« Reply #6 on: Jan 6th, 2004, 12:43am » |
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Bravo...clap clap and a big hell yeah !!!!! to Pink and to Roxy for putting it here.
As Jack Nicholson said in "The Shinning" Words of wisdom Lloyd. Words of wisdom....
Thank you.
Linda
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Pinkfloyd
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Re: Words about clusters and the boards....
« Reply #7 on: Jan 6th, 2004, 1:59am » |
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Thanks Rox, and everyone.
Just to make it clear....I fully understand not only the need, but also the importance, of the support that occurs on this side of "the tracks."
Be well everyone
PF
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Woobie
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Re: Words about clusters and the boards....
« Reply #8 on: Jan 6th, 2004, 5:23am » |
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yep = Pinkfloyd is a wise man!!
BUMP!
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Lizzie2
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Re: Words about clusters and the boards....
« Reply #9 on: Jan 6th, 2004, 6:37am » |
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Yea Pinkfloyd!
I agree with ya! I love reading the general boards and helping people there as well as laughing with people there. It helps to raise my spirits up. However, I also spend a fair amount of time (not as much as I should recently!) on the meds info board because I truly think it is important to learn about all the ideas and things people have tried! If it weren't for the support and ideas from both sides of this site, I wouldn't have gotten the O2 I just used this morning, and I wouldn't be getting the help I have. This site has helped me soooooo much. I think it can definately do the same for others. I'll make a point of reading the other side of the board more often! Take care and PF!
~Lizzie 
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Tara Ann
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Re: Words about clusters and the boards....
« Reply #10 on: Jan 6th, 2004, 5:29pm » |
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I have nothing much to add, cept great post Pink, and there are some really great reply's/comments. I can't agree enough with the pursuit of knowledge dealio with meds and treatments, up till recently I pretty much gave up "helping" myself. (too many idiot docs and got "tired" but am back at working on getting some real help again. Also agree sooooo very much with how invaluable this site is with support and as Ramon said the people that "actually care about you" It has been such a sanity saver as I have said time and time again. I love you guys..........
P.S. sorry I haven't posted much lately to anyone that was wondering, I have been around and reading.......
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Woobie
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Re: Words about clusters and the boards....
« Reply #11 on: Jan 7th, 2004, 3:19pm » |
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bump
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Linda_Howell
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Re: Words about clusters and the boards....
« Reply #12 on: Jan 7th, 2004, 6:35pm » |
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[b][/b]BIGGER BUMP.
Linda
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kim
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Re: Words about clusters and the boards....
« Reply #13 on: Jan 7th, 2004, 7:26pm » |
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on Jan 5th, 2004, 9:20pm, Roxy wrote:[i]The discussions here by people that explain their cycles, their symptoms, how they react (or don't react) to different meds is ESSENTIAL to finding out the origin of clusters. I'm sure you've heard the old saying..."and a child shall lead them".....for people to do proper research,,,,,they need data!!!
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Thank you Roxy for the clarity.
And as always, Thank you Pink for EVERYTHING!
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