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The you Tube Martyrs... (Read 736 times)

Lefty

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The you Tube Martyrs...
Apr 11^th, 2009 at 9:07am

We all know how we like to do our wee dance in private only to be seen by our nearest and dearest. I think respect must go out to the few volunteers who have done the their dance in full view of thousands.

They say action speaks louder than words. I no longer have to go through the same old routine of explaining my suffering knowing to well that their never really going to understand...!

Now I just say the 7 magic words...
(Look up Cluster Headaches in You tube)

Since I've began doing this I have been phoned , text and emailed with the same response.

OMG

I didn't realise that they were so bad let me know if there's anything I can do for you...

I'm sure you know who they are and their probably posting on this site as I speak. So to you public dancing Martyrs out there

RESPECT....!

Lefty...!

"When money's tight and is hard to get
And your horse has also ran,
When all you have is a heap of debt
A PINT OF PLAIN IS YOUR ONLY MAN."
— Flann O'Brien

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Cathi_Pierce

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I love YaBB 1G - SP1!

Posts: 1191
x0|Oregon City|USA||0|0|OR,Oregon
Gender: female

Re: The you Tube Martyrs...
Reply #1 - Apr 11^th, 2009 at 9:35am

Lefty, y'know, you're right! And to the You-Tube society, these people are anonymous.
Around here, we call them Tony(our dear friend Artonio, who had the nerve to allow himself to be videoed during a hit)....and Chuck-ok, Clusterchuck, who has always wanted to go into dancing professionally, and admits to being addicted to showtunes..........and, as a chronic sufferer, exposed himself to the world, when, for a very long time, noone even knew of his CH!
Yes, it takes a lot of nerve to allow your self to be caught on tape, doing 'that thing you do while getting hit:....it's NOT a pretty sight,
BUT it really drives it home to those who just don't get it!
There are more people who are resdy to be videotaped. It just happened the tapes were rolling with Chuck and Tony, and they agreed. Thank you both, gentlemen, for putting yourself out this way in order to explain to the world what CH is.
cathi

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

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Lefty

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Re: The you Tube Martyrs...
Reply #2 - Apr 11^th, 2009 at 3:15pm

Quote:

[quote][quote author=02203529281E112824332224410 link=1239455220/1#1 date=1239456927]
Around here, we call them Tony(our dear friend Artonio, who had the nerve to allow himself to be videoed during a hit)....and Chuck-ok, Clusterchuck,

Hi Cathi your right and all it is the two lads...! I haven't watched it since I started to post here ( Just did and it still made me shiver)

I wouldn't have recognised them from their photo profiles here.

Artonio has gone all grey...

And I Thought Chuck was a wee red pop up Demon...

Respect Gentleman... Smiley

Lefty...!

"When money's tight and is hard to get
And your horse has also ran,
When all you have is a heap of debt
A PINT OF PLAIN IS YOUR ONLY MAN."
— Flann O'Brien

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Cathi_Pierce CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1191 x0\|Oregon City\|USA\|\|0\|0\|OR,Oregon Gender:	Re: The you Tube Martyrs... Reply #3 - Apr 11^th, 2009 at 3:21pm Well, you're close, Lefty. Chuck is a wee PINK pop up demon( I don't care what vhis avatar looks like, Chuck's color is definitely pink!)........and Tony just gets more handsome. My heroes...deep sigh... Cathi
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ClusterChuck

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

Posts: 5394
Greenville, North Carolina
Gender: male

Re: The you Tube Martyrs...
Reply #4 - Apr 12^th, 2009 at 12:13am

Cathi, don't you be picking on my cute lil demon! He and I spend LOTS of time together!

And what is wrong with PINK?? ?? ??

Lefty, Tony and I each did those videos to help, in whatever way they can, our plight. It has been amazing the remarks that I have received in the five plus years since mine was filmed. Both of us are amazed at how far and how much they have helped to open eyes, both in the "civilian" population and the medical field.

Svenn has used the clip, to GREAT success in every one of his talks, over in Norway.

Neither Tony, nor I had any idea, the mileage that our clips would get. Seeing the number of people that it has helped, and the programs that have gotten good use of them, it was well worth the discomfort af having such a personal time, filmed and shared.

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: The you Tube Martyrs... Reply #5 - Apr 12^th, 2009 at 1:01am i still have a hard time watching those videos.
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ClusterChuck

CH.com Alumnus

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

Posts: 5394
Greenville, North Carolina
Gender: male

Re: The you Tube Martyrs...
Reply #6 - Apr 12^th, 2009 at 6:32am

-johnny- wrote on Apr 12^th, 2009 at 1:01am:

i still have a hard time watching those videos. Cry

You are not the first person that has told me that.

It seems that a lot of clusterheads have a real hard time watching some one ELSE getting hit. It does not matter how often they, themselves, get hit, or how long they have been a sufferer ... It is just so hard to see some one go through something that you know EXACTLY how it feels.

It no longer surprises me to hear a fellow sufferer say: "You are the first person I have ever seen, get hit."

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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