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Do you Remember? (Read 2005 times)

ClusterChuck

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The BEAST rises again,
and again, and again,
and .

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Do you Remember?
Jun 15^th, 2009 at 12:14am

Today I had the distinct pleasure to talk to a site newbie.

During our talk, he kept stating how amazed he felt, to be talking to another sufferer. He has had clusters for about 17 years, and has never talked or heard of another sufferer. He said that when his wife found the site, and he started reading, he was reduced to tears. While talking to me, he almost felt like tears, then, too.

I kept telling him that it was a VERY normal reaction to finally getting to relate to someone who KNOWS what we go through. I told him that we ALL went through that, when we found the site. The site has just blown him away.

Now, to the title of this thread, do YOU remember when you first found the site, and then joined? Do you remember how you felt? Do you remember the first person you had a PM with? The first one you spoke to? The first person you met?

I VIVIDLY remember how I felt when I found the site, and when. It was right after the New York convention. Everyone was talking about "porch". I had pretty much the same reaction that the newbie I spoke to today. I was reduced to tears. I remember being blow away when some one mentioned some tiny little detail, that I also felt or experienced. It was so overwhelming.

I wish I could remember the first person I PM'd with or talked to. I DO remember the first people that I met. It was either our Elaine, or NancyC, at a gathering down in South Carolina. I met the two of them, in the parking lot of the place where we were meeting. There were about ten or twelve of us there, and I remember it SO well! It was a life changing event. Some of those first people have gone their own way, some are still here, one has died (suicide), but I remember and cherish each and every one of them!

So what do YOU remember about your ch.com firsts?

And who was this newbie that I had the distinct pleasure af talking to today? None other than coolhand_mac, or Mike. He is a AWESOME guy, and I can't wait to meet him, and his lovely wife, in St. Louis!

Mike, thank you for our great conversation, today. It was such a pleasure! And I say it again, Mike, never be ashamed of the tears. We have all done that!

Melancholic Chuck

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McGee

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I Love CH.com!

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Re: Do you Remember?
Reply #1 - Jun 15^th, 2009 at 3:06am

I remember my first post, i didn´t cry but was damn close, I couldnt believe what i was reading. i got over excited waiting for my wife to come home to show her everything i´d found. I used everyones experiences and methods of fighting this thing to help me get through my last cycle and even when things got bad and i was close to cracking up id come on here and rebuild my strength to carry on. You guys and my wife have kept me sane over the last 3 months.

what did i learn
1. keep a headache diary
2. heat doesn´t work for me
3. ice packs work
4. coffee
5. My O2 set up (how it works and how to use it properly)
6. never piss into the wind
7. not all angels have big wings (my wife for one)
8. alcohol is a triger
9. how to recognise the symptoms and the best way to deal with them
10. keep my chins up, a smile on my face, stiff upper lip and the bulldog spirit.

Mark (the only sane one in this world Cheesy

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Callico

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Re: Do you Remember?
Reply #2 - Jun 15^th, 2009 at 12:53pm

I remember finding the board back when it was the Old old board! I had a free 30 day trial of the internet and googled CH and found the site. The only problem was I only had a week left on the trial, and didn't have two nickels to rub together to get the internet. Later on the library put in three computers that were tied to the internet and I would go once a week to use the allotted half hour a week on the computer to check the site out. I sat in the library in the middle of the main floor more than once with tears running down my cheeks!
I didn't actually join the site until it was the now "Old Board," but I have blessed DJ's name ever since for saving and giving me back my life.

I went to the first Davcon and the first person I met was Thomas. the man about broke my ribs with the hug he gave me and we both had tears going. I also met Lady E (Elaine), Ramon and Woobie, Jackie and Blake, Gena (that's when she and Thomas met), Lizzie (ASB), and several others that my failing memory doesn't recall. I drove three hours to spend 45 mins with those crazy, wonderful, people then drove three hours home, trying not to cry the whole way. I could not believe the bond that I could make in such a short time, and my wife, who was with me could not believe the emotional reaction I had to all of those strangers! (And she hasn't even MET Chuck yet! Grin

) I had to miss the next three Davcon's due to work, but made the fifth one, and then made LouCon last year and met Chuck. I hate to say this publicly, but that was one fo the deciding factors that I WAS going to go. Love ya, Bro! This year it looks like I'm going to make the convention for the first time! I'm so stoked I can't believe it!

I didn't mean to write a book, but this place means a great deal to me. I could add so much more, but another day, and another book. Grin

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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Kevin_M

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Re: Do you Remember?
Reply #3 - Jun 15^th, 2009 at 6:29pm

ClusterChuck wrote on Jun 15^th, 2009 at 12:14am:

the first person I PM'd with or talked to.

I thought I had CH much better handled finally with Imitrex and reading about it, episodic then, sometimes you think so when its over. It was definitely getting to be too much, what was I going to f'n do. Then one day decided to see what was on the Internet and found others conversing. Wow.
What a tight knit bunch. First pm was Nancy C, along the way talked to Bob P about an OUCH t-shirt, magnetic people that were SO great.
A little excitement was in the air with the Atlanta convention a few months away and tried to arrange driving in with Nancy but it fell through somehow, she roomed with Piera I think.

Didn't like the new board format in 2002 so stayed away, but well, with CH, couldn't.

Eventually found MUCH more improvement handling CH here.

Never forgot that certain close bonding reflected in the posts when I first read awhile and then posted some. Unforgettable what an f'n b*tch CH is.

And I guess there was this DJ guy. Wink

Good thing.

Thanks, Chuck.

« Last Edit: Jun 15^th, 2009 at 7:19pm by Kevin_M »

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cavalier

Ex Member

Re: Do you Remember?
Reply #4 - Jun 15^th, 2009 at 7:48pm

Chuck,
It’s not that long for me since inhabiting the CH space, but it seems like a lifetime,
I don’t look at profiles even if I leave a PM; I just let my imagination do the rest.
I have pictures in my mind of all of you.
I do recall the first time when I sat looking at the screen wondering “dare I”
And I’m glad I did.
I really can’t get over how many people are on this site and I don’t like to think of it,
“I’m really shy “I’ve always found it a problem speaking in public.
Colin.

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jon019

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"Ya gotta believe!"

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USA
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Re: Do you Remember?
Reply #5 - Jun 15^th, 2009 at 9:29pm

It was DJ! I had signed up for the site after discovering it in a desperate search for someone, anyone, who understood. The whole first evening was spent with tears streaming down my face....I couldn't believe there were others out there EXACTLY like me...who knew, who cared, who were unbelievably funny in the face of an unbelievable nightmare...

Thing is, tho signed up, I couldn't post...I pm'ed DJ, all the while thinking..this guy has enough to do running this site without holding some knothead newbies hand...I resigned myself to just reading.

As my brother is wont to say..."not a bit of it"...DJ made multiple efforts to assist and eventually we worked the problem out. I was so excited I never did introduce myself, and later apologized for that oversite.

My next pm, both ways, was with Mr. Happy...re O2..I was blown away that a vet would bother with me...shouldn't have been...it's the norm rather than the exception.

Next was Gator...his compassion was so evident that when I noted he seemed a little down...I pm'ed him with thanks for his class and support of so many. He wrote back and said I had made his day...well bro'... same here.

And then, I cannot fail to mention Helen! I wrote of a computer problem that had me flummoxed. Helen pm'ed me that she had no idea what was wrong or what she could do about it other than to offer encouragement and support. It was so sweet, I wrote back a really smart-ass reply that I hoped she would appreciate ( I saw how you all teased). To my relief, she was delighted...and we have exchanged smart-ass pm's ever since...When I quit the site, for reasons I no longer recall, I disappointed this classy lady...and she was the pointy toe in the bum that brought me back...thank you dear.

I could list these forever, there are so many more, but will just relate one more. When I left, I pm'ed Linda with some weak-ass shite about why...to paraphrase, she posted that "He knows he needs us...he'll be back"...right Linder...so right...so right.

Thank you Chuck! It is said that you pick your friends but not your family...au contrere...if you join THIS family, they pick you and won't let ya go....

Best,

Jon

The LARGE print giveth....and the small print taketh away. Tom Waits

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-johnny-

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fayette county ohio
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Re: Do you Remember?
Reply #6 - Jun 16^th, 2009 at 4:43am

i joined this site a few years before my last cycle. i didn't hang out much until the cycle hit.

a certain person on this board who i will not name due to his modesty read my pleads for help and could identify with what i was going through. he reached out to me and gave me his #. i remember asking "him how do you sleep?" he responded "i don't". he gave me nothing but cold hard facts. something you only get from another clusterhead. i think we must have talked for hours. he mentioned davcon to me. wasn't an hour later i got a load going right through there. he met me in the frigid parking lot at that motel with a welcoming smile, a warm handshake and a bear hug. all of this was an answer to my prayers. god had sent me an angle. anytime we get close to each other we meet up, have a cup of coffee and talk about headaches. i haven't talked to him much lately but when life throws me a curve ball he gets a call from me. you know who you are. thanks buddy Wink

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BarbaraD

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Hugs to ya

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Re: Do you Remember?
Reply #7 - Jun 16^th, 2009 at 7:11am

Oh, I remember back in 98 - I was just learning what the Internet was, but was in the pits of hell and typed in Clusterheadaches and found ch.com and found out I was NOT alone. There was Bob G and lcbob and Bob P and DJ and Kip and of course, Drummer. This old broad was "definitely" crying.

Then Elaine had this idea to go to Rochester to meet Drummer and it really seemed like a good idea at the time and I had these airline miles just sitting there and..... and then Kip had some airline miles not doing him any good and.... well one thing led to another and we all met at Drummer's garage and it was an experience of a lifetime.

In 2000 (OUCH had been formed) we had this blow out convention in Las Vegas (about 35-36 of us showed up) and there was NOTHING but crying going on. Well, we did do a lots of hugging.

Since then the conventions have taken on a life of their own and Meet and Greets all over the country have gotten really popular (Chers getting together for "mini" conventions just "because".)

A couple of times I've gotten calls from Donna H down in Florida inviting a bunch of us to come down there for a "cookout" or whatever and we've gone (from all over the country). Now if you want to see a site - imagine a bunch of Clusterheads sharing a condo (a bunch of Chers, I might add who've never met before they landed in Florida). And if you've never "roomed" with Nancy C. - well, that's another experience all by itself! Wink

But we had Chers from Boston, Indiana, GA, NC, TX, FL and ND for a cookout on Saturday night and the burgers were great.

One of the sayings on this MB has been (since day one) "Sorry you have to be here, but glad you found us." still holds true today.

Hugs BD Kiss

What don't kill ya, Makes ya stronger!

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Marc

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Re: Do you Remember?
Reply #8 - Jun 16^th, 2009 at 9:00am

Yep, it was 1999 but seems like yesterday. I was truly stunned to hear from so many people who actually understood. Yes, I too sat in front of my PC with tears streaming.

Bob P realized that I lived very close to him, stopped by to visit and became a great CH mentor and tremendous help to me in those early days - did more for me than he can ever realize.

Jonny was also relatively new to the site then, but he was already giving and giving to help fellow CH'ers. Michelle (Mast) sent me a care package at time when I needed it most, which I never forget.

I could go on and on filling these pages with stories of so much help being freely given, and it continues today. Some people would be amazed at just how much good is being done quietly behind the scenes.

I'm still chronic, but I have control of my life now because of what I have learned here.

Pay it forward.

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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: Do you Remember? Reply #9 - Jun 16^th, 2009 at 1:34pm My first "off the MB" was with Drummer, then Jack from Lawn Guyland. Then this idot named Hub came along, wait, Drummer was the idiot. Lots of communication with DJ while building the OUCH web site. Life long friends - DJ, Drummer, Elaine, Hub, Paco, Margi, Marc and many, many more.
Back to top	« Last Edit: Jun 16^th, 2009 at 1:34pm by Bob P » Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron. "SHUT UP HUB!" IP Logged

Agostino Leyre

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Re: Do you Remember?
Reply #10 - Jun 16^th, 2009 at 5:27pm

Yep, I remember it, was going to go home and off myself that day, and found the site. It literally saved my life. Got lots of helpful information, but didn't really bond with anyone back then, just mostly read. Kinda left for a while and came back during the second version of the board, became a lot more active. Finally met some really special people in person and have become so thankful for all of you. And will always try to help out when I can.

Triptans cause increased number of hits and increased intensity. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.&&

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stevegeebe CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1687 Mandeville, LA Gender:	Re: Do you Remember? Reply #11 - Jun 16^th, 2009 at 8:15pm Georgia and Fu welcomed me in my first post. I'll never forget it. Thanks DJ. Steve G
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-johnny-

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fayette county ohio
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Re: Do you Remember?
Reply #12 - Jun 20^th, 2009 at 3:55pm

i remember posting about being terrified of driving a 80'000# vehicle during an attack. many people posted that i needed to find an alternative to truck driving. then there was this guy who had been an alaskian crab fisherman, a marine, a very talented computer guru, and a otr flatbed truck driver gave me ll kinds of information on carrying o2 on the truck. since then i've had the D.O.T inspect the tank and found that it was securely fastened to the inside of the sleeper and i didn't get in trouble. the same has happened at port inspections. i followed his advise and continued to drive a truck in spite of this crippling condition.

thanks kirk Wink

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Cheese Head

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Re: Do you Remember?
Reply #13 - Jun 24^th, 2009 at 2:19pm

Callico"I went to the first Davcon and the first person I met was Thomas. "

Yep, Thomas ......Crushed me as well. Finding this sight way back in 199(something) was HUGE for me...finally finally finally finding people who could understand. Until then I fealt a bit like a sideshow freak of nature wondering through life with a terrible secret....

Unfortunatly I am back online now (old handle cannot be used for reasons that I will not be going into) but you old timers know who I am.

I worked with the busters on the front end of things and have enjoyed quite a few years of minimal (shadow) to no cycles. Got cocky and messed up on my prevent cycle, so here I am for now.

Like an idiot I actually let the thing get a foothold but anticipate knocking him back down soon.

Anyway...more info than you need on this thread. Chances are I will be poking around her for a little while, sorry to see so many old timers still active on this board (wishing PF days to you all).

J@mmin

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thebbz Ex Member	Re: Do you Remember? Reply #14 - Jun 24^th, 2009 at 2:33pm Good try Chuck...I ain't going to cry again. So this will be short. Kip rocks still to this day. RIP 02,02,02 clusterbusters.com The first time I ever aborted an episode. Ok I will go take a walk now, I cant cry in public. all the best the bb
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Do you Remember? Reply #15 - Jun 24^th, 2009 at 4:13pm Oh I remember, the old streaming board, discovering oxygen..... And the first person to reach out to me was Lady Elaine. Yeah.....a life changer..... Joe
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Callico

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Re: Do you Remember?
Reply #16 - Jun 25^th, 2009 at 2:28am

Joe, I think Lady E was the second person I met at Davcon I. She is another who has made a tremendous impact on my life.

I'm not trying to play favorites on the ones I mention, because just about all here have made an impact on me. Some of those who are no longer her for one reason or another I really miss, but those who have stayed are the most important ones.

I am glad for the ones who are able to become PF, and find a life for themselves outside this family, but I do wish they would drop in now and again just to let us know they are OK.

I know that a lot of times things get a bit heated when we have political discussions on here, although I hardly ever venture an opinion. Grin

I appreciate the opportunity to discuss things here, and even though there are several that I disagree with most of the time I have learned from them, and I appreciate their passion for their beliefs. (Even if they are wrong.) I have always tried to contend for my beliefs without being contentious, although I admit that I have not always succeeded.

One of the highlights of my life was getting to meet DJ and Steph at the last Davcon, and to finally get to tell him thank you for my life in person. I know he is embarrassed by it, but I'll say it again. Thank you. Like Thomas and others I was on the verge of ending it until I found this place and found hope.

Jerry

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