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(Message started by: Svenn on Sep 18^th, 2003, 2:56am)

Title: Clusterbuddies
Post by Svenn on Sep 18^th, 2003, 2:56am

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

Title: Re: Clusterbuddies
Post by UnsolvedEquation on Sep 18^th, 2003, 4:11am

Not me ... for I have no one :'(
All alone in this hell hole :'(

Title: Re: Clusterbuddies
Post by BarbaraD on Sep 18^th, 2003, 5:05am

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

Title: Re: Clusterbuddies
Post by Jewel on Sep 18^th, 2003, 7:45am

I've been painfree for 21 days now, but my clusterbuddy is Vig.

Title: Re: Clusterbuddies
Post by jminmilwaukee on Sep 18^th, 2003, 7:46am

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

Title: Re: Clusterbuddies
Post by JDH on Sep 18^th, 2003, 8:06am

on 09/18/03 at 07:46:59, jminmilwaukee wrote:

Perhaps we should declare a worldwide "Meet with a Clusterhead" day?

jmin

I like that idea.

Jim

Title: Re: Clusterbuddies
Post by Jackie on Sep 18^th, 2003, 8:19am

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 8)

Title: Re: Clusterbuddies
Post by TxBasslady on Sep 18^th, 2003, 9:26am

;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) ;)

Title: Re: Clusterbuddies
Post by ClusterChuck on Sep 18^th, 2003, 9:34am

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!

Title: Re: Clusterbuddies
Post by Jewel on Sep 18^th, 2003, 9:37am

Chuck: What about your shadow? :'( :'( :'(

Title: Re: Clusterbuddies
Post by ClusterChuck on Sep 18^th, 2003, 9:50am

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

Title: Re: Clusterbuddies
Post by jonny on Sep 18^th, 2003, 1:32pm

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 ;) )

Title: Re: Clusterbuddies
Post by echo on Sep 18^th, 2003, 2:08pm

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.

Title: Re: Clusterbuddies
Post by gmlevenhagen on Sep 18^th, 2003, 2:30pm

:'( 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 ::)

Gena

Title: Re: Clusterbuddies
Post by Charlie on Sep 18^th, 2003, 2:39pm

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

Title: Re: Clusterbuddies
Post by vig on Sep 18^th, 2003, 2:51pm

I am very lucky to have a real Jewel for a clusterbud.

Title: Re: Clusterbuddies
Post by ZAIRA on Sep 18^th, 2003, 2:59pm

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

Title: Re: Clusterbuddies
Post by Opus on Sep 18^th, 2003, 3:04pm

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.

Title: Re: Clusterbuddies
Post by Carl_D on Sep 18^th, 2003, 3:13pm

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

Title: Re: Clusterbuddies
Post by OneEyeBlind on Sep 18^th, 2003, 4:30pm

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 !!!!!!!!!!

Title: Re: Clusterbuddies
Post by katethecelt on Sep 18^th, 2003, 9:11pm

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

Title: Re: Clusterbuddies
Post by nancyc on Sep 18^th, 2003, 10:47pm

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

Title: Re: Clusterbuddies
Post by Edna on Sep 18^th, 2003, 11:11pm

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

Title: Re: Clusterbuddies
Post by JDH on Sep 18^th, 2003, 11:46pm

on 09/18/03 at 14:39:37, 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

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

Title: Re: Clusterbuddies
Post by Georgia on Sep 19^th, 2003, 12:38am

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

Title: Re: Clusterbuddies
Post by jminmilwaukee on Sep 19^th, 2003, 7:32am

I say we declare the Day that DJ officially went live with the First ClusterHeadache board as "Meet a CH day".

ANyone know what day that was? DJ?

jmin

Title: Re: Clusterbuddies
Post by taraann on Sep 19^th, 2003, 8:19am

I've found the greatest support through this MB, the Chatroom, and instant messenger. So far on my MSN list I have Chuck, Svenn, CathiP, Edna, Grant, and Zany.....I've also talked to a couple other "cats" (heheh) on MSN too....if anyone ever wants to contact me through msn or yahoo you can through my email addy which is tara_ann_77@yahoo.com. I was offline for a few days due to pc probs and guess who called me??? Chuck did and he told me ppl were worrying about where I was! That was my first phone call from a clusterbud. THANK YOU CHUCK!!! I just want to say you all (and you know who you are) that were worrying about me...THANK YOU (and of course sorry ;) ) I was just on such a "high" that day made me feel so good to think I was missed ;D

Also I am afraid to name names for fear of leaving anyone out (I have the crappiest memory) but I just want to say how calming Svenn and CathiP are to me and others when a CH is coming. I saw them support someone a few times online and they just have the most amazingly calming effect I've ever seen.

There are many in the Chat I love talking to also and that have been very helpful to me, I am not going to name names from chat cause there are so many and my mind is just mush today so I would hate to leave anyone out.

Ya see I am leaving ppl out.........how can I leave out Paul (vig) who has sent me many private messages when I really needed it. Thank you Paul:-)

Title: Re: Clusterbuddies
Post by Jewel on Sep 19^th, 2003, 8:43am

on 09/18/03 at 09:50:34, ClusterChuck wrote:

I KNEW I would leave some out!!!! I wonder if in Jewel's case it was intentional?

:'( :'( :'( :'( :'( :'(

Title: Re: Clusterbuddies
Post by Jewel on Sep 19^th, 2003, 8:44am

Just kidding Chuckee!! Love ya like a grandpa! ;D ;D

Title: Re: Clusterbuddies
Post by ClusterChuck on Sep 19^th, 2003, 9:11am

And I am suppose to be HAPPY with that last comment??? ".. like a grandpa ..." Go ahead, make me feel like I am even OLDER than I am!!! Damn pest .... ;)

Grandpa Chuck

Title: Re: Clusterbuddies
Post by Jewel on Sep 19^th, 2003, 9:12am

Hehehehe! :P

Title: Re: Clusterbuddies
Post by ZAIRA on Sep 19^th, 2003, 10:04am

on 09/19/03 at 09:11:35, ClusterChuck wrote:

And I am suppose to be HAPPY with that last comment??? ".. like a grandpa ..." Go ahead, make me feel like I am even OLDER than I am!!! Damn pest .... ;)

Grandpa Chuck

.... I don't remember Chuck...... how old did you say me you are? ;D ;D ;D ;D

Title: Re: Clusterbuddies
Post by Svenn on Sep 19^th, 2003, 12:22pm

Thats right Jewel and Zaira

Chuck is over the edge here and its right to cann him GRANDPA :)
At least im on the right side of the 50s :)

Just love you all

The very best from Svenn

Title: Re: Clusterbuddies
Post by hopefull on Sep 19^th, 2003, 12:57pm

Thank you to the persons who have ALWAYS BEEN there for me you know who you are...
[[[hugs]]]

Title: Re: Clusterbuddies
Post by cathy on Sep 19^th, 2003, 1:00pm

Wow where would Wes and I start...CathiP for sure she was our first real clusterbud, then Svenn, my yanky man who was a brick to say the least....and Wendy who negotiated the back roads to visit me..., Edna, Sherry and Chuck...then I got to meet Opus, Kim, Cindra, Nancy and Peppermint in August that was awesome, Zaira, Vig and so many more it has been life changing, all of these i've chatted with on the phone and through email and endlessly in chat.....and my special friend Jonny who I have grown to love cos he has made us laugh so much...thanks Jonny!! :-*

Thanks all of you....oh there was someone else but he may have been a Figment of my imagination, he still has my pig though...lmao ;D

Cathy & Wes

Title: Re: Clusterbuddies
Post by Loris on Sep 19^th, 2003, 1:10pm

Very good post, It is very important to have a clusterbud.

Zaira is mine.

She changed my life.

She is very nice with me ( and also she is a beautiful girl ;D ), when I was discouraged she always was present to comfort me.

I shared with her many attacks and her with me.

I have just spoken with her, even is she’s living a bad time with her CH she always has a good word.

I see her pretty often and I’d speak with her all the time.

Who had the pleasure to meet her, will think as me.

Thank you, Zazi. ;D

I wish you all PFDAN, regards Loris

Title: Re: Clusterbuddies
Post by OneEyeBlind on Sep 22^nd, 2003, 10:01pm

Hey Svenn, thanks a ton !!!!!! Your idea panned out. When you posted this, I replied to KateTheCelt. I called her tonight ...... and well, what can I say .......................

She rocks as a clusterbud !!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We should all have someone to reach out to. Don't wait till you are in cycle ....... cause those headaches might cause static on the line !

Title: Re: Clusterbuddies
Post by cootie on Sep 22^nd, 2003, 10:28pm

So cool you all are so close....I envy that ! I'm like Paul and not a real big phone person.....not that I don't wana chat on the phone but I jus don't do alot of callin and do more work on here......I'm mostly on here late at nite when work is done or off and on inbetween projects durein the day. I don't even get into chat much anymore.......but yer all the most special people I ever met and think about ya'll ALL THE DAM TIME !!!!! I've spent alot of up's and down time on here jus readin and it's helped me jus bein able to be here and part of it all. You all make my world ROCK Pam

I've been lucky nuff to git to talk on the phone to CathiP and oneyeblind and Peppy....oops wait a minute.....I ment ta say privilaged !!! Oh and I got to talk to Happy too...how could I leave him out !!! ;D

Title: Re: Clusterbuddies
Post by OneEyeBlind on Sep 22^nd, 2003, 10:35pm

Hey Coots ... your posts on the board ROCK ........ so even if you ain't a phone person ......... you be ROCKING as a supporter !!!!!!!!

Title: Re: Clusterbuddies
Post by Linda_Howell on Sep 23^rd, 2003, 2:07am

I have thought long and hard about your post Svenn, and I think it's a great idea to have someone you can call when you're totally in the dumpster. However, I am alone and will remain alone in this. No one is here for me in the middle of the night or in the middle of the day. However, Several people here call or e-mail at the right exact time I am feelng at my lowest.

Jackie did it just the other day. Told me she was sending out the dogs on me, cause I didn't check in.

Margi always has rope for me to hang onto.

Michelle sends me stuff. and allows me to laugh at her expense.

Other people, who don't want to be mentioned send me stuff.

Cat, is my "smack-me-up-the -side-o-my-head friend.

there are people here who allow me to HELP them. I am grateful for them.

Mr. Happy the ol hippy....brings me joy in just listening to him.

Elaine who brings out every endorphin I ever had in me to laugh myself silly at her.

Ditto: Roxy

KOP who saw me in the grip of the beast and knew what to do and didn't make me feel bad.

TimW, and I saw each other at our worse and he still called me to check up on me..wow.

CathiP. No she's not a sufferer, but she has consistantly called me to see if I was all right and I love her for that. (she drives a Chevy...tho)

No Svenn. I have no ONE. I have many.

LindaH

Title: Re: Clusterbuddies
Post by katethecelt on Sep 23^rd, 2003, 9:52pm

I have been very blessed with friendships here. I should have stressed that talking to my clusterbuddies on IM and through e-mail got me through very rough times during my last cycle & I'll be forever grateful. Plus I've had a lot of fun with them! Chat has been a great source of support and fun too.

I better not start naming ppl or I'll forget someone. You know who you are.

Talking to Nancy last night was the best!!!!! Thanks for being there for me lady :) & all the laughs! You're stuck with me now, LOL. Cheers to Clusterbuddies!

PFDANS to All,
Kate

Title: Re: Clusterbuddies
Post by 5-string on Sep 23^rd, 2003, 10:52pm

I hav'nt met a cluster sufferer yet. I've met you fine people in print but not by phone or in person. Heck, no one here has any idea what I look like or sound like.
I hav'nt posted a photo of me because I don't know how. I'm pretty much computer ignorant. I just got on line 7 months ago.
My e-mail is in my"profile" I live just outside the city of Baltimore on the west side. Look me up if you'd like.
I'm 7'3'' tall, 480 lbs.I live in a cave and eat stray animals. Other than that I'm a pretty harmless,easy going new age kind of guy.
...Mark..