Hey guys....just wondering....I see so many posts from people who have lurked, or once joined......read a few posts, got help or something, whatever they needed.....then just vamped....
I am guilty of this myself......
just wondering.....the people here on the board....the "regulars".....what made you stick around during your pain-free months?

I see many posts from people who chime in maybe once or twice to get some answers then once they got what they need they're "BYE-BYE BABY" :D


I was guilty of this....and MY REASONS for doing such was ignorant....i used to think that not thinking about CH or reading about it would make me forget about it--and they would "go-away"...so-to-speak.......I didnt want to be reminded of the pain when I was pain free.....(talk about being in denial)....
Being a man and stepping up to the plate, facing the music...the ugly truth is that i'm either gonna have CH, or not....and being an active member here won't have anything to do with it....i'm either gonna have pain, or NO-PAIN. My thoughts were irrelevant.

I'm sticking around...... 8-)

It depends upon what they are made of.

Depends, people that got CH for first time or second are probably having bad memory of this malady and just stay away from the topic. Others feel they got helped and will repay that or just feel comfortable/accomodated in here, because it feels like second family, or because they might want to help others.

Venting is another reason too.

There are takers, and there are givers. We all have to do both, but hopefully each of us gives a little more than we take.

Quote:

the "regulars".....what made you stick around during your pain-free months?

Personally, I have no pain-free months.  I stick around because when I first came here I was helped.  I want to give back.

Charlie hasn't been hit for over 10 yrs.  jimi Hendrix also.  DJ himself hasn't been hit in a while.  THEY would have to answer your questions...but I suspect it is because somewhere along the way we all became family.  We met each other face to face.  We got to know and understand each other and helping a newcomer who has no clue became important to them, me , us.  We needed to share with them and let them know they are not alone.  That we c are very deeply.

Linda

I used to come on here years ago when I 1st started getting ch.Was about 34 years old,learned about oxygen and neuros and without realizing forgot the help i got,not that im much assistance anyhow but should have been more of a supporter in my PF times,but again,i hate to read PF posts when im hurtin! just me tho

Because...you don't abandon FAMILY (says the man who once did...a bonehead decision I can no longer even recall why?) I learned....

Because... no one else understands like this FAMILY...or knows more about ch than ANYONE...
"you can check out, but you can never leave"...you are not allowed...YOU'RE FAMILY...and some day... should you need it... this FAMILY will still be here...better to still be on board...

Because...this FAMILY couldn't give a damn what your problems are...you are FAMILY...like myself...diagnosed with a condition totally unrelated to ch...I asked for help...haven't cryed because of the condition...but the overwhelming support and care and love I have received...well, more than a few tears there...

Because...this FAMILY is funnier than shit...

Because....this FAMILY performs miracles on a regular basis with their prayers, thoughts and vibes...

Because...this FAMILY cares about your OTHER FAMILY...

Because...this FAMILY is available 24/7...

Because this FAMILY would tear a shirt, a regulator, an e tank, a facemask, a triptan, a marrow donation, whatever... off their back or out of their stash for YOU...and may not have even met you...and couldn't care less (or REALLY...MORE!)

Because....even the Pittsburgh Pirates once understood what "We are FAM-I-LEE" means..."Pops" Stargell woulda been proud of THIS FAMILY (and Joe, I'm still thinking of you brother)...

Because...it has been said by FAMILY members...."grab an oar and row...nobody rides for free"..it's a long and tough journey...ALL hands are needed.

Because...because...because...........FAMILY! That's what I'm thinking anyway.....

Best,

Jon

WOW Jon :)

YEAH...wow hunh? Blows my mind, every day...glad you are on board...

Hmm Lets see...

I don't get pain free months   :-[

Nobody understands like the people here do   :D

They all have a Great Sense of humor

Everyone here is always ready to reach out a helping hand.

If you are down and really suffering they go the extra mile and pick up a phone or if near by come over to help you.

They offer better advice than any money can buy.

We all keep odd hours due to hits so someone is almost always here.

Awe heck I just plain like it here   ;)   

Could do without the beast tagging along everywhere I go though  :(

PFDAN TO ALL!!

Nice post Jon

  I am (finally) back after a year absence, not because I was pain-free, but because my head has been in a bad place and I have become somewhat reclusive (a plethora of reasons).  That is normal for my wife who is agoraphobic . . . but NOT me.  Both daughters have forwarded facebook invites to at least 25 former friends (mostly actors/theater friends) . . . I have yet to respond . . . though I intend to.

  This Family, now that I'm back . . . will help me get out of the funk I've been in.  One, because I have a life-long need to learn/share . . . two, the need to assuage  the guilt I've felt for not being here for all those newbies that came here as I did more than eight years ago, thinking I was alone with this horror we call the beast.  Three, I've missed all of you . . . I've missed me.

  I never learned to be as succinct as Jonny, so you'll still have to put up with my sometimes overlong posts.

  I'm back

    Be Safe,

     PFDANs

      
       Richard

I stay because maybe, just maybe something I do can make difference in the quality of someone's life. There are not many places I go that I can say that's a possibility.

That....and I kinda like it here.

RichardN wrote on Sep 11^th, 2009 at 10:58pm:

I'm back     Be Safe,      PFDANs          Richard

And I am delighted...you were missed. YOUR oar is there...still shiney from use..your seat is still warm....

Best,

Jon

As I am fairly new, I am lurking at the moment more than posting. I don't feel I can contribute to a lot of topics at the moment, because I am still learning about this beast, but when I do I will be joining in to help anyone with questions :)

I stay because everyone here understands eachother :)

I found this place because something is wrong with me.

I stay because something is wrong with me.

Steve G

Quote:

Because...this FAMILY is funnier than shit...

I don't know about that Jon...

I was erecting scaffolding once in the banking district of London and I witnessed a pinstripe suit wearing banker shouting down his phone slip on a wee curly poo and land flat on his arse.

That wee curly shit still makes me laugh today... ;D

I agree with Jon though, I think we are all family and these guys helped me so I thought I would stick around and help others.. It's that simple.. ;)


Lefty..!

In no particular order...

• Because no one understands like the people here.
  
• Because I have knowledge of my CH and what works for me and I need to pass on what I know.
  
• Because I was helped so much by this family and that help gave me my life back.
  
• Because Doctors don't always have all the answers.
  
• Because I log on every day with the hope that I'll learn better ways to treat and cope with this pain from the vast experience of others.
  
• Because I've come to care deeply about people I've never met face-to-face; my cluster-family.
  
• Because my Son just started his first cycle

-Dennis-

Quote:

Because I've come to care deeply about people I've never met face-to-face; my cluster-family.

Again, Dennis nails it on the head. This is the essence of why people choose to stay.

Never send to know for whom the bell tolls; it tolls for thee.

Racer1_NC wrote on Sep 11^th, 2009 at 11:21pm:

I stay because maybe, just maybe something I do can make difference in the quality of someone's life. There are not many places I go that I can say that's a possibility. That....and I kinda like it here.

yup

Because DJ gave me a home and saved my life.  I got a lot to repay.

Jerry

Callico wrote on Sep 12^th, 2009 at 1:28pm:

Because DJ gave me a home and saved my life.  I got a lot to repay. Jerry

this board has saved my life to....
I left alone as hell in the world before I found this place.

I stay because

*there is new information here all the time

*I've come to love everyone here, those I've met and those I've yet to meet.

*regardless of our political or other life views, this is a family and we can count on each other for support or a swift kick in the ass when either are needed.

where the hell is the logout button...I am looking for it since February..I know i saw it somewhere..damn where is it..what the hell are all these buttons for...it's like star trek in here...:D

black wrote on Sep 13^th, 2009 at 7:15am:

where the hell is the logout button...I am looking for it since February..I know i saw it somewhere..damn where is it..what the hell are all these buttons for...it's like star trek in here...:D

It's like the Eagles song "Hotel California" Black once your here "you can never leave"   ;D

I was alone.

I was welcomed by those I've never met.

I was not judged.

I was educated.

I feel safe.

I was given hope.

I force on. :)

I have been pain free for some years now.  I stay because this place litterly saved my life on more than one occassion.  I want to give back.  No one understands me better than this family of what I went through and may go through again if the beast finds my address again which could happen at any time.  I have met many people here that I care deeply about and have come to love and respect.  I do not want to abandon them in their time of need.  They have always been here for me.

Cuz I'm scared of that Linda chick! ;)

Joe

anybody  remember last thanksgiving when i was laid over in denver? i sat there in the peterbilt nosed in to the idleair, hooked up to the service and poured out my feelings on that tiny touch screen they give you to use. as much as i love being by myself the holidays kinda get to me. wasn't five minutes after i posted i had 3 replies and 6 PMs. before the night was over i talked to at least 4 of you on the phone. the compassion was amazing. at that time i was 8 months out of cycle.

you guys remember when i had the honey bees in my wall? man i couldn't pay the kind of advice i received.  within a couple hours i went from knowing nothing about bees to well educated bee extractor. this board gave me the confidence to get rid of the bees and i didn't have to kill the queen. and i didn't get stung! 18 months out of cycle.

theres so many different kinds of people here from all over the world. i can't say one thing in particular thats kept me here but no matter whats going on i can get help here.

and to touch on what jon said. you can have some kind of headache crisis at 4 a.m. and post something and withing a few short minutes get a reply. even the lurkers will send you a PM. theres always somebody here that cares.

thanks  [smiley=thumb.gif]

Lawrence wrote on Sep 11^th, 2009 at 6:41pm:

just wondering.....the people here on the board....the "regulars".....what made you stick around during your pain-free months?

This site is the reason I have any relief and support other than my wife.  I only owe it to those in pain while i'm PF. 

Most of the folks on here are what I call "angels"

I used to post here for a year several times a week, but somehow I never became a part of the crowd here. What I posted, was rarely answered.
No problem with that, but I resent that someone said ''some people are just not made of that stuff''.
I am and I did, and will try to contribute something worthwhile where I can.

.

Quote:

I am and I did, and will try to contribute something worthwhile where I can.

And you do... ;)


Lefty..!

maalstroom wrote on Sep 14^th, 2009 at 4:28pm:

I used to post here for a year several times a week, but somehow I never became a part of the crowd here. What I posted, was rarely answered. No problem with that, but I resent that someone said ''some people are just not made of that stuff''. I am and I did, and will try to contribute something worthwhile where I can.

you may not be a regular but you are certainly part of the crowd pascal.

Pascal, don't be so hard on yourself!

There is no need to feel like you" fit in with the crowd"

We are all here for a singular purpose.

I will make an effort to reply to your posts.

I wish you all the best and please stick around.

Iddy :)

 
Quote:

jimi Hendrix also.

Still can't get over how cool that name is. I tell my pals that I communicate with Jimi Hendrix over the internet and I know they think I'm back smoking doobies.. [smiley=smokin.gif]


Lefty..!

Nah...........I'm just here for the chicks. ;)

Quote:

Cuz I'm scared of that Linda chick!

  Uh-huh... ::)    right.

Pascal, there is no in-crowd here.  There ARE folks who have been here longer than you and have met up with each other at conventions or get-togethers so we DO feel close....but the only crowd of any importance is that we are family and almost everyone who's written something on this thread has said that.

You are part of our  family. 

Linda_Howell wrote on Sep 14^th, 2009 at 8:46pm:

[quote] You are part of our  family.

Now THAT'S what I was talking about....... [smiley=sayyes.gif]

What made me decide to stay?  Well, it wasn't any one thing or one moment where I said to myself that I was staying.  It just sort of happened.

I've been here since Sept. 2000.

I'm just hoping Bob J stumbles across a cure once he's analyzed all his postings.  I dont want to miss it.

For me I came here to find help and I found you guys are more than that you are friends, family, support, docs when needed and just a shoulder and since I,m new here I can,t say thats why I stayed but I will say that I not going to leave because I found help, some laughs, and friends

i joined in March and been hanging around since, i try to get on the forum at least once a week. I havent posted much in the last month or so  :-[ no excuse just been busy with my self, familly and things. I would still be an unconfirmed CH sufferer if it wasnt for every one here and no words can describe my gratefulness to you all.

Mark (i came, i saw, I stayed)

Mark, I hope you never leave!  I always get a laugh from your posts even when they are serious.  thanks.

Pascal,  What Linda said hits it pretty close.  There are a number of us who have met each other in person, and that makes a big difference.  I felt like an outsider for the first couple of years too, but after meeting some at Davcon1 there just was a bit of a change in relationship on the board.  Nothing changed as far as what was posted or replied, but I KNEW who it was that posted some of the time.  You have the disadvantage of distance and a pond in between, but you are as much a part of the family as any, and we would be the poorer if you left.

Jerry

I was very lucky to find this wonderful place when in a particularly bad cycle. I got support and a bunch a new ideas to fight this thing, some of which have worked very well.

But, when the cycle ended I faded away. 3 years since that cycle and I never came back. I don't know why. I have no excuse. I guess I was just being selfish.

Well, now the beast is back and so am I. And once again the people on this site are coming through for me. Sorry for being so selfish before. I won't be leaving again. Thank you all!

The good news for me is this is the lightest cycle I have ever had. Not sure why but not complaining. Strange thing these Ch's. Strange indeed.