Barb



big time!!!

As Helen would say..."I am chuffed to bits"  that you're back my friend.

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I have an oar  that I've been waiting to give you.  It's solid gold...just like you.

I hear what Barb is saying but I've also learned that people must do what is best for them.  I do wonder how they are getting on though and miss some of them too.

I'd never scorn anyone for taking a break.  God knows after a rough cycle there is a lot to catch up on in ones life.  Lots of living to do.

Piper, it's wonderful to see you again.   You've been missed around these parts, girl.  We sure had a bunch of fun in Elaine's old chat.  Wow, that was a years ago.

Guilty 

I've got a heap of excuses I could try on you but I don't really think they would cut it 

Kate

Much the same happens on the Ouch UK website and with membership - members come and go and when they're out of cycle - They just get on their lives.

I've noticed here - and not wishing to rock the boat - that some members post prolifically on joining, gaining sympathy and advice - often with very dramatic and epical stories to tell. I'm not knocking the pain and suffering, and the way this condition can destroy a normal way of life - as a supporter, I've seen it all happen, been there - got the T shirt - but have you ever considered that some who visit this site have this condition rather than CH?

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aintnodisco wrote on May 6^th, 2009 at 3:12pm:


Glad to see you topside again Piper.  I was down in the hold getting your seat ond oar out of storage.  The folks that have been here for a while knew you didn't jump ship, you were below deck with a nasty case of laryngitis.  Lets hope there are no relapses!

Anyway. welcome back topside, enjoy the fresh air and sun and join in!

-P.

Today I've been thinking about the reasons that I don't post much here...    

Like others have said, this place saved my life - really - we all know that saying that isn't necessarily an exageration!  

I joined this site in 2005, got trolled - still feel silly about that - harrassed Jonny and defended the troll - the joys of being a newbie...
Since then there have been two times that I have been online whilst someone was threatening to kill themselves.  NOw that is some freaky shit - and being that I'm on the other side of the world...     This place can be really quite scary.  

It isn't much of an excuse... and like I said earlier I've got many (and they are just excuses)... but please try to understand that some of us are not as strong, extrovert, able, whatever....  (offline I'm quite shy and reserved).  I will forever be thankful for the help that you have given to me over the years.   And whilst I don't post much, I am a lurker.  I do care about you all, I do try to keep up to date with what is happening....

Sorry that I'm not able to be more proactive,  


Kate

I'm here every day, several times a day.....  More than I should be... I'm a CH.com addict.  I offer help when I think it will make a difference. Many times I just feel that others here are more capable of making a difference than I.

Jeannie

Been here since Spring of 2004, and not planning to go anywhere unless all computers break down everywhere.

ALL of us and one little ole you.

    I wonder who has the biggest ulcer.

Kate in Oz wrote on May 7^th, 2009 at 9:26am:


I hear what you are saying Barb...and I always listen to you (he sheepishly raises his hand, guilty your honor). Actually, most of the time I post (originally started '02-03 I think) is when (was) OUT of cycle (and I ALWAYS lurk). When in cycle I do not trust what I might say, feel like a whiny wuss, seem to view everything as how it relates to me, me, me (which really ISN'T me). Just don't know what to say in support. Sooo...I tell stories as therapy, with hopes they might interest or amuse or cause reflection for folks who REALLY need a distraction.

What Kate said above (and Kate, I love the handle and appreciate and look forward to your posts) could have come right out of my mouth, word for word. That's me....

And Cathi…you are eloquent and touching on that soapbox, must be a long legged bed!



Best,

Jon

Well, since I'm one of the people that this thread is directed to, here I go with my explanation.  

I've been getting CH for 9 1/2 years.  I was formally diangosed with it 4 years ago.  I belong to a fair amount of online message boards/forums (mainly guitar [since I've been playing for 30 years], and ham radio [yes, I'm a techno chick - I've had a ham radio license for 31 years]).  When I found the old board in February of 2007, I'd had a couple of very nasty Kip 9 attacks, WHILE taking Prednisone, to help break a wintertime cycle (I'm episodic) that started when our unusually warm 40F January temps literally took a nosedive to -10F or -15F in the first week of February.  I was surprised and shocked that I was having CH while on Prednisone (I'd never had this happen before in the almost 2 years I'd taken Pred to stop a cycle).  So, I posted on the old board as a newb, a question as to whether or not anybody had ever suffered CH while taking Prednisone.  I found out that CH while taking Prednisone was not a rare occurrance.

But, my post ended up being like opening Pandora's Box.  People started asking me about my headaches - OK, fine and dandy, I told them.  That's when (I hate to say this) it got bad.  Sorry to say this, but the O2 missionaries piped up, badgering me almost non-stop, about how I NEEDED to use O2, and that my neurologist (a board certified headache specialist, director of a headache center, and Associate Proffessor of Neurology for the Medical College of Wisconsin) was an idiot becuse she didn't have me on O2 (I'd discussed it with her, and we'd both agreed that since my headaches weren't chronic and out of control, it wasn't necessary - I'd just waited too long to use the Migranol I use for an abortive, when I had my CH while taking Prednisone).  I asked people as the OP, if we could could just end the thread (and thanks for the information about CH during Pred usage) and "please stop telling me that I have to use O2."  That didn't work at all.  There were still certain hardcore people who continued with the O2 badgering, only now they also insisted that I was being foolish by not using it.  When that happened, I got fed up, and quit posting on the board in late Feb. 2007.

Why did I come back to the (now new) board?  I don't know.  I guess, because I'd just started a cycle this past March (the first time I've ever had CH in March), and I just wanted to talk (either commiserate or provide support), to somebody who's going through the same headache nonsense I'm going through.  CH is so rare, that other than online, I've never run into anybody else in person who also suffers from it.  That makes it hard at best to try to talk about it to the average person.  In most cases, they really don't seem to understand just how nasty CH is, and how it really can mess with your life.  But all of you - you've gone through it.  You know that it's like to live with CH and when I, or somebody else on this board has a Kip 9 or a Kip 10 attack, you KNOW just how BAD that is.  To the average person that means nothing, unless they literally see you suffering from the attack, those Kip values are almost meaningless to them.  Besides, I personally believe that support is so much better, when you get it from somebody who's going through or has gone through the same thing you're experiencing.  As long as I don't get badgered about O2 useage again, I will try to show up here at least semi-regularly (maybe not every day, but at least once or twice a week - I'm usually pretty busy).

Hi Carolyn,

I'm a young-oldtimer.  I'm 45 years old. I got my license back in 1978, and I've been an Extra since 1994.  Up until 2001, I was a VE too.  I go through phases with Amateur Radio, where I'm really into it, or (as is the case now, because I got over my guitar playing blahs) only very casually into it.  I also have 2 engineering degrees.  Yes - the O2 pushers do get a bit pushy at times.  O2 is great stuff, and for some sufferers, it's the only thing that will stop a CH attack.  I didn't mind the suggestions, but when I outright asked them if they could give it a rest (since I really didn't need the O2), they kept on going (which I didn't care for).  Nowadays, if I'm worried that somebody will bring up the question/accusation why as a longtime cluster headache sufferer I'm not doing O2, I'll add to my post the statement that please, I don't want to get into a discussion about why I'm not using O2.  

73 & 88,
Ellen - AF9J