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Topic: Clusterbuddies (Read 1244 times) |
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The mad viking
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Clusterbuddies
« on: Sep 18th, 2003, 2:56am » |
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Just a question here?
How many of you have a true clusterbud that you can call when you are hit or just feeling "down"
I feel extremly lucky.
I have Edna,Chuck,Cat and a lot more that i can call to.
Perhaps this is something to think about.
Try and make a network that you can call if you need it?
Nobody deserve to be left alone in this hellhole!!
1 thing is your family,but its a special "insurance"to have a buddy that REALLY understand what we have,and that we can call at anytime.
Think about this at least
The very best from Svenn
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Always Look on The Bright Side of Life
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UnsolvedEquation
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Not me ... for I have no one 
All alone in this hell hole
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BarbaraD
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Re: Clusterbuddies
« Reply #2 on: Sep 18th, 2003, 5:05am » |
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Svenn you're right and that's what this MB is all about and that's what OUCH is all about - SUPPORT!!!!
Yes, we all need a Clusterbuddy.
Sometimes this MB seems like a bunch of BS, but there's a lot of good done here. It makes me sick when I see the "feuds" going on between people for 'silly' reasons. We're here to HELP not hurt each other.
Personally, I've had phone calls from Clusterbuds who picked up on my "signs" and called me to give me a word of encouragement or to tell me to get it together or whatever I needed at that moment in time. I've received e-mails when I didn't realize I was depressed telling me to pull out of it or just cheering me up.
And then on the other hand - I KNOW my clusterbuds well enough to kick them in the back side or call them up when I see signs that they need it too. That's known as a Support Team.
This MB gives us a chance to get to know one another. We understand the pain we go through (and unless you go through it - you don't understand it).
I've been an old mother hen on this board since the beginning and I can get just real angry when I see some of you blasting some newbie who is hurting and says something you disagree with. All of us "oldies" are sensitive about narcotics, but if you'll remember back that's the first things docs tried on "us" when we got hit cause they didn't know what else to do - remember back before we were "diagnosed correctly". No, they didn't work then and they still don't work now (for the most part), but doctors are still giving them out because we haven't educated ALL the docs yet.
I'd suggest that everyone get to know a few clusterheads (e-mail, conventions, get togethers or whatever) and make some real "Clusterbuds" of their own. It's amazing what happens when you meet face to face. Unless you've met another clusterhead, you can't imagine what it's like.
Speaking of that - I have a couple of chickens who haven't checked in lately. I think I'd best get on their rears and find out why. They know how Mom worries when they don't write.....
Hugs BD
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Lissa
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Re: Clusterbuddies
« Reply #3 on: Sep 18th, 2003, 7:45am » |
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I've been painfree for 21 days now, but my clusterbuddy is Vig.
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Episodic cluster survivor since 1995 at age 16.
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jminmilwaukee
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Re: Clusterbuddies
« Reply #4 on: Sep 18th, 2003, 7:46am » |
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Svenn,
This is excellent advice. I believe that actually talking to another "freak"  , errrr clusterhead face to face can be very uplifting.
At this point I have only taked to ONE over the phone (I was freaking out over wether or not I would survive the beast at that time). Unbelievable for someone who has suffered for 15 years now.
Talking with someone who truelly understands takes the support issue to a completly different level. Don't get me wrong "supporters", we appriciate and need you more than you know.
Perhaps we should declare a worldwide "Meet with a Clusterhead" day?
jmin
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JDH
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Re: Clusterbuddies
« Reply #5 on: Sep 18th, 2003, 8:06am » |
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on Sep 18th, 2003, 7:46am, jminmilwaukee wrote:
Perhaps we should declare a worldwide "Meet with a Clusterhead" day?
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I like that idea.
Jim
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Jackie
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Re: Clusterbuddies
« Reply #6 on: Sep 18th, 2003, 8:19am » |
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Svenn,
This is a grand idea. I know many out there have clusterbuddies that they can call....some don't. It's a great comfort to speak directly to another sufferer. I've seen the results when Blake talks to another clusterhead....those results are always good....
Supporters try hard and we do our best but there is no way we can ever know the physical pain. We can never relate 100%....only clusterheads can do that.
Most of you have a special clusterhead friend here.....exchange phone numbers if you haven't already. A phone call could be your port in the storm.
Jacks 
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TxBasslady
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Re: Clusterbuddies
« Reply #7 on: Sep 18th, 2003, 9:26am » |
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;D
I had the pleasure of talking to my clusterbud , on the phone yesterday morning. Talk about excited !!!!! I was beside myself.
Jacks is my clusterbud.......and when I heard her voice on the other end of the line , I cried. (Then she made that post in the afternoon...I cried again !!)
Barbara D...I am coming to see you real soon........
Michael ....you are never alone, sweetie. NEVER EVER
Jean ( who is happy that she talked to her clusterbud..I luv ya gf) 
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How lucky I am... to have known someone who was so hard to say goodbye too.
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ClusterChuck
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Re: Clusterbuddies
« Reply #8 on: Sep 18th, 2003, 9:34am » |
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Darn, I hate to say this!!! I am actually going to say that that crazy viking is right!
Svenn, and the others that I talk to, knows how much his/her friendship and phone calls have meant to me. In the short time I have been here, I have formed some very close ties to quite a few clusterheads. I have yet to meet one face to face, but have talked on the phone to several. I can't wait to start meeting face to face!
I know for a fact that without the phone calls and online chats that I have had, I would not have been able to make it to this point. Thank God for cell phones with LOTS of minutes, and free long distance calling!
Alright, you boneheaded Norweeegian, I'll say it! You are right. An excellent idea. I agree with you. (I wonder if he is going to get a swelled head now?)
Good posting, Svenn.
You know I love ya, even with your saggy ole butt!
Chuck
PS: Cathi, Edna, Tara, Cat, Billy, Kirk, Ree, Michelle, Jonny, (I knew I should not have started naming names ... The list could go on forever!) and all the rest of my family, THANKS!
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
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Lissa
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Re: Clusterbuddies
« Reply #9 on: Sep 18th, 2003, 9:37am » |
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Chuck: What about your shadow?
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Episodic cluster survivor since 1995 at age 16.
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ClusterChuck
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Re: Clusterbuddies
« Reply #10 on: Sep 18th, 2003, 9:50am » |
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See what happens when a senile old coot starts to type in names? I KNEW I would leave some out!!!!
I wonder if in Jewel's case it was intentional???
You know I love ya girl, so everyone, make sure you put Jewel's name up there on my list too! (there, are you HAPPY now, pest?) heehee
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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jonny
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I once called Carl and for two hours I made him play the guitar solo's to every song I barked out, damn, he knew every damn solo....LMAO ;D
Ive got the phone numbers for about 40 or 50 clusterheads, some night im going to call everyone of them up one by one and tell them to STFU and then hang up quick.....LMMFAO ;D
I have a feeling they will all know it was me ;D ;D ;D
................................jonny
(BTW:...I do have one special clusterbud )
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echo
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Re: Clusterbuddies
« Reply #12 on: Sep 18th, 2003, 2:08pm » |
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CathiP and OneEye call me when they get the feeling I'm out of sorts.
Cat and Oring PM on ocassion when I'm coming across as being down.
I call Cathip when I need a laugh and OneEye when I think she could use one.
I call Slammy and Jonny just to give them a little shit, and vent from time to time.
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Killroy 2.0
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Re: Clusterbuddies
« Reply #13 on: Sep 18th, 2003, 2:30pm » |
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No clusterbud here
I know that my hubby and family feel for me, but near the end of my cycle I start getting the old;
its just a headache,
Suck it up,
how can it hurt that bad and pain meds don't work
I know you have a head ache but I really need my work clothes cleaned.
Sorry, just got the last on last night  [color=Maroon][/color]
Gena
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Charlie
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Re: Clusterbuddies
« Reply #14 on: Sep 18th, 2003, 2:39pm » |
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Thanks Svenn.
Long before clusterhead sites....or PCs, wouldn't it have been nice to have a clusterbuddy when we thought we were the only one? What a difference it would have made.
I hadn't met one of you goofs until I rode to Alexandria Bay. To my surprise, this thing hasn't yet turned us all into homicidal maniacs.
Charlie
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vig
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Re: Clusterbuddies
« Reply #15 on: Sep 18th, 2003, 2:51pm » |
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I am very lucky to have a real Jewel for a clusterbud.
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ZAIRA
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Re: Clusterbuddies
« Reply #16 on: Sep 18th, 2003, 2:59pm » |
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Thank Svenn...
In the saddest times I’ve always counted on the support of many CH sufferer (here and in Italy) in particular 2 of OUCH Italia and 2 here.... Paul/Opus and Paul/vig, I should thank them every day for their support, help, love and comprehension they give me all the time. It is a feeling which can not be explained, but they know what I mean...
Love, Zaira
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| « Last Edit: Sep 18th, 2003, 3:11pm by ZAIRA » |
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Opus
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Re: Clusterbuddies
« Reply #17 on: Sep 18th, 2003, 3:04pm » |
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I'm not a phone person, I feel more at home on the internet.
My Clusterbud is Zaira, she always seems to write when I have had my worst days, bringing joy to replace the memory of the pain. My only hope is to help her and others as She has helped me.
Opus/Paul
Zazi, you beat me too it.
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| « Last Edit: Sep 18th, 2003, 3:18pm by Opus » |
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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Carl_D
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I have several Clusterbuds scattered abroad, but I have one right across the river that I know I can Call when I am down for the count. Jim (JDH to you all) has been there for me more than once, and I'll be here when he needs me too.
Peace,
Carl D
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OneEyeBlind
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Re: Clusterbuddies
« Reply #19 on: Sep 18th, 2003, 4:30pm » |
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I have tons ... and I am soooooooo grateful for each and every one of them !!!!!!!! You should see my phone bill from last month. Old hubby is gonna cut me off soon !!! LOL. But I say the more the merrier !!!!!!! I have talked to some of you just over the phone, and have been lucky enough to meet lots of you in person. Each conversation somehow enriches my life ... but the in person stuff ya just can't put a description to !!!!!! I love you all !!!!!!!!!!
I'm looking forward to meeting a few more at the PA/NJ ouch meeting ............ let's see if the hurricane can stop us !!!!!!!!!!
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katethecelt
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Re: Clusterbuddies
« Reply #20 on: Sep 18th, 2003, 9:11pm » |
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I've talked to many great cluster buddies through IM, but not on the phone. That saddens me. I'm naive about the ettiquette of asking for and/or giving my phone number to people.
If anyone needs a call, send me your phone number via email and I'll be there for you. That's what being family is all about.
PFDANS to All,
Kate
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nancyc
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Re: Clusterbuddies
« Reply #21 on: Sep 18th, 2003, 10:47pm » |
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I am very grateful to have lots of clusterbuds here that I talk to alot on the phone....and go see and meet in strange, exotic places LOL...really, I am blessed ....When I am down, you guys pull me up, if i am out of meds, you send off a package, when i need my butt kicked...you gladly do that too...And I try my best to return the same to you .....thanks and smiles,nancyc
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Edna
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Re: Clusterbuddies
« Reply #22 on: Sep 18th, 2003, 11:11pm » |
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awwww Svenn, you giving out ALL our secrets man......LOL
Yep it sure does make a person feel special when you got that special somebody around here that really knows when somethings wrong, really understands when you just feel like crap but don't really know why.....or just when you need somebody to say it will be ok.
Support can be even greater when it comes from a fellow sufferer......NOTHING against our supporters who live with our hell as much as we do.
Hoping each one of you finds that clusterbud hanging around waiting to be your special contact......someone you can let know when you'll be away for a while so we all don't worry around here.
Like..........if you go on vacation, if you fall sick, if your computer is on the cookoo again, and even if you're in hurricane territory ( thanks pal) they can worry about you!!
pf wishes to all,
EDNA
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JDH
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Re: Clusterbuddies
« Reply #23 on: Sep 18th, 2003, 11:46pm » |
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on Sep 18th, 2003, 2:39pm, Charlie wrote:
Long before clusterhead sites....or PCs, wouldn't it have been nice to have a clusterbuddy when we thought we were the only one? What a difference it would have made.
Charlie |
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How true Charlie. Hell for the 12 years before I got online I figured I was the ONLY one going through this madness. The isolation and not being able to make people understand really sucked. When I heard the term suicide headache I totally understood because there were so many times I considered it just to make it stop hurting.
THANK YOU DJ, you'll never know what a difference you've made by bringing us together.
And ty Carl, YOU ROCK brother!
pfdan's to all,
Jim
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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Georgia
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Re: Clusterbuddies
« Reply #24 on: Sep 19th, 2003, 12:38am » |
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Unsolved Equation and Gmlevenhagen (and anyone else that doesn't have a cluster bud yet):
I'll be your cluster buddy!
My email is: pixieg@txucom.net
My home phone is: 936-597-4801
My cell phone is: 936-537-0452 (I have free minutes on weekends and after 9 PM CT)
My AIM is: georgiacze
I live in Montgomery, Texas. (kinda by Houston sort of somewhere pretty much)
Write me, call me, IM me, come meet me...anytime.
BTW...Great post, Svenn.
And...I really like the idea of the meet a CH'er day!
Peace and love,
Georgia
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