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Topic: what the pain has taught me (Read 2358 times) |
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kim
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Re: what the pain has taught me
« Reply #25 on: Aug 15th, 2002, 8:57pm » |
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Doubtful. Last pick up - well, he married me. LOL.  B4 that, well ted you was just a lil fella
So, whats with the Newsletter? Hmmm? Checked out the last one. Sure seems like a long time since last print? whatchathink?
Ponders at times........
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Ted
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Re: what the pain has taught me
« Reply #26 on: Aug 15th, 2002, 9:06pm » |
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Is that an offer to help with the newsletter? Still looking for volunteers. You are now officially on the spot.
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kim
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Re: what the pain has taught me
« Reply #27 on: Aug 15th, 2002, 9:13pm » |
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i know Ted. Been working my way to this pint (i mean point) for some time 
The ting (i mean THING ) is, I have read the newsletters. why so few and far between? Talk to me. Seems vague to me. I'm sorry. Don't mean to offend in any way! Would love to help and have chock full of experience. But, I don't notice too much of any kind of definitive direction in the writing. (I KNOW i'm gonna get my butt kicked but I mean WELL!!!) You can always e-mail me- maybe I can help-- maybe not. i simply can't tell from what I've seen. Wish I knew you guys better. Not easy over the computer! 
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Ted
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Re: what the pain has taught me
« Reply #28 on: Aug 15th, 2002, 9:27pm » |
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Well, I only worked on it for the first two of them. The second one I wasn't going to but was drafted. Then, seeing only one was done since that one I offered to do it again last month. And you're right with your critique of it. But when I do this I ask and ask and ask for volunteers and maybe, if I'm lucky, three people offer to help and a thousand people post that no one is doing anything for us in the same timeframe. In the original newsletter and in the article I opened the NL with I stated where the direction was going to go. Unfortunately, I wasn't able to ensure that would happen.
Jayacat2@aol.com if you (or anyone else) want to help.
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Not4Hire
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Re: what the pain has taught me
« Reply #29 on: Aug 15th, 2002, 9:40pm » |
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Yep...Ted.......this thread has turned into *Newsletters and the Days of Our Lives*....deserves it's *OWN* thread...... I'm still available to help with this.... hadda turn down a nomination to the OUCH board... Lord knows I don't wanna job that's just a heartbeat away from bein' a REAL DEAL......... but then again, maybe I'm one of the three you refer to.......
...trying to be PROactive ole N4H......... ;D
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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kim
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Re: what the pain has taught me
« Reply #30 on: Aug 15th, 2002, 9:43pm » |
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Okay Ted. You are right of course. there is much thought here but no one to put direction and purpose. And can't be done alone! I will e-mail you to further explore possibilities. As far as I can see, the newsletter has huge potential. The secret is putting it out every MONTH. and after each month, review and follow up. An effective newletter can do so much.
I'm at Kimskitchen529@aol.com. Don't be hesitant. Even if NO newsletter comes of it, we can communicate back and forth and WHO KNOWS, sumpin might just WORK!
Now, what more can ya ask for! Probably gonna get ALL SORTS A E-MAIL!
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Ted
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Re: what the pain has taught me
« Reply #31 on: Aug 15th, 2002, 9:50pm » |
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Hey Steve. You definitely were one of the people I was refering to. And unturn down your nomination. You'd be good at that too.
Kim. You've spoken a mouth... keyboardfull here.
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kim
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Re: what the pain has taught me
« Reply #32 on: Aug 15th, 2002, 10:01pm » |
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Screams Alot, Talks Alot, etc, etc, etc. ;D
Let's see what happens
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jko
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Re: what the pain has taught me
« Reply #33 on: Aug 15th, 2002, 10:05pm » |
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I wish I had a dollar for every time I've had people say things like "I know what your going through, I get migraines" or "I get tension headaches, I know how it feels" Bull Fuckin' shit!!!! I'm sorry my friend but you don't have a Goddamn clue what the pain of a CH is like, stick an IV needle into your eye socket and pump it full of hot water then bring it to a rolling boil and maybe you'll understand, now do it once or twice a day for about 6 months.
I on the other hand have no idea what it's like to be a severe burn victim, lose an appendage, get shot, have a severe muscle disease, lose a child, lose a spouse etc. Obviously pain is relative to the individual and to the situation, thats why a support group like this works, we do understand.
The old axiom "I was sad because I had no shoes until I met a man who had no feet" is a quaint sentiment however the fact that someone elses pain is greater doesn't lessen the severity of my pain, it only serves to increase my pain level because now I have empathetic feelings for them that add to my emotional load.
All my life I've been a borderline empath, very sensitive to what other people are feeling and over the years I've had to learn to put up walls to protect myself from the emotions of others, if I didn't I'd be depressed or crying all the time, but I think that the pain of CH has taught me that everyone has their own demons in life to fight, this is mine, you have yours and no, I don't want to trade. JKO
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Charlie
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Re: what the pain has taught me
« Reply #34 on: Aug 15th, 2002, 11:04pm » |
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Rats Ted:
Last time I waited until it was too late to work on the thing, now I feel guilty ??? If you can tell me what to do, I'll work on it. Just don't expect me to bright.
Damn whiners
Really useful old Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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oringkid
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Re: what the pain has taught me
« Reply #35 on: Aug 18th, 2002, 5:23pm » |
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Ted, did you get my email?
What exactly do we want this newsletter to do? What can it do? What kinds of things (articles) do we want in it? Who is its target audience?
Sherry
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Ted
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Re: what the pain has taught me
« Reply #36 on: Aug 18th, 2002, 6:07pm » |
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Hey Sherry,
If you're the one who sent me an e-mail last week with an embedded object and a file with the subject heading that was something about an "assignment" it did make it to my mailbox. But when I don't recognize the e-mail address (and I don't know yours) I usually delete anything with something embedded and/or a file attached. If that wasn't you, however, no. It never got to me.
We want this newsletter to educate ourselves and the public who might happen to stumble across a copy as well as the medical community. The NL is also for cluster artwork (pictures, poems, short stories, etc...) for the people not interested in reading the articles (and for those into both) who can get an idea from the art and also so sufferers can relate to it as well. It's also to keep the membership abreast of what OUCH is working on/has accomplished and maybe if the committee chairs will send me that info THIS time (not to put them on the spot now) that will be done better. My opening article in the first NL might explain it better if this is to vague.
So, if that mail last week was from you can you send it again, without the file and embedded object? Thanks, Sherry. And welcome aboard?
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Opus
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Re: what the pain has taught me
« Reply #37 on: Aug 18th, 2002, 10:22pm » |
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Posted by: Charlie Posted on: Aug 15th, 2002, 6:49am God is all-powerful, always present, and always benevolent. Lots of people believe this.
If so, hell and satan cannot exist.
Charlie
Charlie, God is all Loving, becouse of this he gave us and the angels free will to turn against Him. Satan and 1/3 of the angels left heaven becouse they thought they could do it better. We also have free will to believe or disbelieve.
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Zed-Zed-nine plural-Zed alpha,
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Charlie
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Re: what the pain has taught me
« Reply #38 on: Aug 19th, 2002, 6:52am » |
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Well.....
An all benevolent, all powerful and always present god will not demand worship as it would be unnecessary. A satanic creature would never have been created, nor will such a benevolent god need to play with his creations. All powerful means just that.
Mean old Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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oringkid
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Re: what the pain has taught me
« Reply #39 on: Aug 19th, 2002, 7:42am » |
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Ted, my email had "Ok Ted, I am ready for my assignment(s) (this is not a virus, I promise, Oringkid)" as the subject.
I use incredimail and it uses stationery. When I send an email to someone whose email does not support the stationery, it comes as an attachment.
I will send again. Also, I have Norton antivirus that checks for viruses in incoming AND outgoing mail.
Sherry
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| « Last Edit: Aug 20th, 2002, 8:00am by oringkid » |
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Opus
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Re: what the pain has taught me
« Reply #40 on: Aug 19th, 2002, 8:23pm » |
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Well.....
An all benevolent, all powerful and always present god will not demand worship as it would be unnecessary. A satanic creature would never have been created, nor will such a benevolent god need to play with his creations. All powerful means just that.
Mean old Charlie
Charlie, God does not demand worship, nor does he need it, He receives it becouse of what he has done for us. God didn't create evil, evil is simply the lack of God as darkness is a lack of light. Satan became evil when he the most beautiful angel thought he was better than his creator. I do not understand why God has allowed some of us to endure this horrible pain caused by satan and his demons but I know there is a plan and reason to everything that God does. Paul B.
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Zed-Zed-nine plural-Zed alpha,
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Charlie
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Re: what the pain has taught me
« Reply #41 on: Aug 19th, 2002, 10:33pm » |
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If (and that's the thing) he's all good, all present, and all powerful no form of evil or deception would be necessary or possible. IF all those three things are true.
This stuff can be fun but soon they're going to tell us to shut up. 
Take care.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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nancyc
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Re: what the pain has taught me
« Reply #42 on: Aug 19th, 2002, 11:23pm » |
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This pain has taught me....to live each pf day i have to the fullest...wish i could do that when i am getting hit but unfortunately, i have not gotten that far....but today because i am pf...i am enjoying all life has to offer me...in fact, don and bill, i ate lobster today...lol. nancyc
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Drk^Angel
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Re: what the pain has taught me
« Reply #43 on: Aug 19th, 2002, 11:58pm » |
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This has been a public service announcement paid for by the Clusterheads Against Theological BS. Thank you.
PFDAN........................ Drk^Angel
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| « Last Edit: Aug 20th, 2002, 12:00am by drkangel » |
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Little Deb
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Re: what the pain has taught me
« Reply #44 on: Aug 20th, 2002, 12:14am » |
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Cat,
Can you really be on the computer with a kip 8???????
I can't function at all with an 8. I couldn't even make a decision. I usually have 12's though. And am just beside myself.
Deb
PS
Ree, thanks for the words.
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Little Deb
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Re: what the pain has taught me
« Reply #45 on: Aug 20th, 2002, 12:18am » |
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PSS
Angel,
I second your motion!!
Take the debate to Barbara Walters.
And form a committe for the newsletter.
Front page article "What the pain has taught us..."
And forward copies to every neurologist in the world.
Just a thought.....
Deb
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Ree
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Re: what the pain has taught me
« Reply #46 on: Aug 20th, 2002, 2:49am » |
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ok this newsletter sounds cool...Dont forget me I write too,from a supporters point of view that is....
if you are looking for a supporters corner IM IN...
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SFChris
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Re: what the pain has taught me
« Reply #47 on: Aug 20th, 2002, 10:23am » |
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Okay - a comment on the theoretical BS
"I do not understand why God has allowed some of us to endure this horrible pain caused by satan and his demons but I know there is a plan and reason to everything that God does. Paul B. "
I for one, refuse to surrender my pain to a/the 'devil', or for one minute believe that satan can control my biology. Why bother even taking medications, if your pain is caused by some otherworldly entity? Just sit back and let the invisible evil run amok...
Sorry for the rant - but I've got a headache.
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Opus
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Re: what the pain has taught me
« Reply #48 on: Aug 20th, 2002, 4:54pm » |
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Sfchris, Good point! I guess that life with CH's has changed my theology and I am Mad As Hell with whatever is stopping me from doing anything outside this summer. I do not blame God so I blame Satan even if he is not at fault. I believe in medicine but don't understand why we need to take it. Feeling a little funny after stopping the beast with Imitrex.
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Zed-Zed-nine plural-Zed alpha,
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NancyMcFree
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Re: what the pain has taught me
« Reply #49 on: Aug 20th, 2002, 5:58pm » |
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Wow, I am truly blow away by some of the comments made here .... and truly heartwarmed by others. While I suffer, and intead I do suffer I like other people on this board know that you cannot compare one persons pain to another. It all depends where you are at when the pain hits. I for one can definitely say that a burn victim probably suffers more pain than any of us. 20 years ago my father in laws house burnt to the ground. My brother-in-laws fiance hung from the side of the house while it burnt, afraid to drop; proably from frear that she would kill herself. Too bad I never got to ask her why she never let go. For days we vistited her in the burn unit to where she was flown via lifeline in Baltimore. We watched her struggle for life and then beg to die in just about in the same sentence. They pulled the plug on her after 4 days of suffering ....... I think we can all say that after 4 days of our pain, death is still not welcome. I think for her it was. At least I hope so. For the rest of us here I wish PFDAN and if you can't get them ........ just remember .......someone around the corner always does have it worse.
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