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Topic: Out Of Cycle Instructions (Read 421 times) |
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ClusterChuck
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Out Of Cycle Instructions
« on: Apr 11th, 2007, 8:37pm » |
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I am not sure if i should post this here, or in another section. Oh well ... Let me know if I should post it in another section, too.
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In all my time here, I can't ever remember a thread dedicated to this subject:
What to do, when NOT in cycle?
First and foremost, CONGRATULATIONS!!! Most of us LOVE to hear that news! You really make my (our) day when I (we) read of this! Enjoy your pain free time! Live life to its fullest. Spend time with your family, loved ones, and friends. Do those things you were leery of doing while in cycle.
Second, quit worrying and panicking about when your next cycle will be. There is nothing you can do about it, so quit worrying, and get back to enjoying life, pain free! Thinking about clusters, or reading about it will NOT bring them back any quicker! When the cycle starts, it will start. Quit worrying!
Third, make sure you are fully armed to deal with the beast, the next time he comes. Have your game plan in place. Inform your loved ones, of what to expect. Have your meds available. For those in the USA, where we have so much trouble getting all the imitrex that we need, DON'T stop filling your imitrex prescription! This is a HUGE point! Build up your supply, so you have plenty on hand, next cycle. Imitrex has a long shelf life, and many of us have used them, up to two years after expiration date. Beside, you may discover that it is not all YOUR imitrex. Maybe your buddy clusterhead left THEIR supply at your house, when they visited. (wink wink) And you have to mail it out to them.
Fourth, just because you are pain free, and out of cycle, that does not mean that you have to leave the web site. Many are here in and out of cycle, and we value those! While you were in cycle, people were always here for you. Now pay it forward and do the same for those that are in cycle. Lend your support and experience to those in need, just as others did for you. We value your input and support.
Also, if there is any breakthrough in treatment, believe me, you will find the full details HERE, first. None of us know EVERYTHING about clusters, regardless of how long we have dealt with them. We all can learn a new trick or whatever. So stay with us. Keep up to date. There are plenty of chairs available. Let us know how, and what you are doing. You ARE our family, and we care, in and out of cycle.
But, most of all, KICK your heels up, and DANCE!!! Enjoy your pain free time!
Congratulations on surviving another cycle! We KNEW you could do it! We are proud of you, and happy for you!
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
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Grandma_Sweet_Boy
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Re: Out Of Cycle Instructions
« Reply #1 on: Apr 11th, 2007, 8:41pm » |
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It scares me when you post serious stuff - but very well said, my friend!!! 
Carol
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Jonny
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Re: Out Of Cycle Instructions
« Reply #2 on: Apr 11th, 2007, 9:05pm » |
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I think I love you, Chuck 
(Did I just say that?) 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Sean_C
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Re: Out Of Cycle Instructions
« Reply #3 on: Apr 11th, 2007, 9:07pm » |
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Very well said Chuck 
Sean...................................
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AussieBrian
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Re: Out Of Cycle Instructions
« Reply #4 on: Apr 11th, 2007, 9:07pm » |
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Fifth, drink heaps of beer for those who can't.
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Redd
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Re: Out Of Cycle Instructions
« Reply #5 on: Apr 11th, 2007, 9:08pm » |
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on Apr 11th, 2007, 9:05pm, Jonny wrote:I think I love you, Chuck
(Did I just say that?) |
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Yes you did and..... 
I can say I love him and know I'm safe...
You on the other hand Jonny, had better bring an extra few locks for your hotel room door in Richmond...
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broomhilda
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Re: Out Of Cycle Instructions
« Reply #6 on: Apr 11th, 2007, 9:09pm » |
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Nicely put Chuck, great post!!!
Oh and ps- I love you too
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Suck it up Princess...
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JeffB
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Re: Out Of Cycle Instructions
« Reply #7 on: Apr 11th, 2007, 9:30pm » |
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Very nice, Chuck!
I think I have some salt in my eye.
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alienspacebabe
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Re: Out Of Cycle Instructions
« Reply #8 on: Apr 11th, 2007, 11:20pm » |
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on Apr 11th, 2007, 9:05pm, Jonny wrote:I think I love you, Chuck
(Did I just say that?) |
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ditto 
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Yorky
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Re: Out Of Cycle Instructions
« Reply #9 on: Apr 12th, 2007, 12:49am » |
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thats some post chuck buddy
(bet your next one...will be eerrr.... 
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George_J
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Re: Out Of Cycle Instructions
« Reply #10 on: Apr 12th, 2007, 1:26am » |
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Well said, my friend.
Best,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
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And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Turts
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Re: Out Of Cycle Instructions
« Reply #11 on: Apr 12th, 2007, 1:44am » |
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well said chuck and thank you
they are indeed words of wisdom. i dont know how many times I visited this site while out of cycle and have started to panic and image 'symptoms' and think that i have been 'contaminated' back into cycle because i have started to think about Chs again.
enjoy the PFD's and these will later help you survive when the skys arent so blue.
Thank you.
I dont know if I love you, but i do like you alot.
Turts
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sandie99
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Re: Out Of Cycle Instructions
« Reply #12 on: Apr 12th, 2007, 2:08am » |
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Great post, Chuck! Now, let's hope that we're all HAPPY dancing very soon...
PF days for all,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Kirk
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Re: Out Of Cycle Instructions
« Reply #13 on: Apr 12th, 2007, 3:24am » |
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Well said my friend. Thank you.
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seasonalboomer
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Re: Out Of Cycle Instructions
« Reply #14 on: Apr 12th, 2007, 5:53am » |
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fantastic advice.
Oh, and you could add, "and don't forget to wear sunscreen"
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barry_sword
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Re: Out Of Cycle Instructions
« Reply #15 on: Apr 12th, 2007, 6:40am » |
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Nicely put Chuck. I am one of those coming out of cycle but am still getting some hits. I cherish each of those PF days and know that more PF times coming.
When the cycle ends I will still be here, I would never bail out on my friends and family, that is the way I am.
Thank you all
Barry
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sldrswyfe
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Re: Out Of Cycle Instructions
« Reply #16 on: Apr 12th, 2007, 6:58am » |
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MORE Chuck!!! I love this...and the great insight to little boys....
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Jackie
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Re: Out Of Cycle Instructions
« Reply #17 on: Apr 12th, 2007, 7:25am » |
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Wow Chuckster.....great post!!!
And to think.....I would have sworn you didn't have a lick of sense...
Love to ya...
Jackie
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Melissa
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Re: Out Of Cycle Instructions
« Reply #18 on: Apr 12th, 2007, 8:45am » |
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Chuck, that was more eloquently put than anything I've ever read on this site about being out of cycle.
Tactful and to the point!
mel
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minnie
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Re: Out Of Cycle Instructions
« Reply #19 on: Apr 12th, 2007, 9:38am » |
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Chuckie poo well said.As a supporter not living with a
sufferer now I don't get the life stops problem personally.But I do remember and with April and beth They Love their daddy and so I hurt through them.Supporters need to enjoy life too...but I know you still keep an eye out for the tell tale signs.
Minnie supporter to the board.....
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andrewjb
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Re: Out Of Cycle Instructions
« Reply #20 on: Apr 12th, 2007, 9:39am » |
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. well said chuck, wise words indeed. the worring, is a worry at times. andrew.
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aprilbee
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Re: Out Of Cycle Instructions
« Reply #21 on: Apr 12th, 2007, 9:50am » |
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I agree 1000% 
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Mac_Muz
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Re: Out Of Cycle Instructions
« Reply #22 on: Apr 12th, 2007, 10:32am » |
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Thanks Chuck.... pretty much that's it for me...
i wonder though, about a few things..
My first real diagnois was happened and a rought time besides Ch, as I had been pretty ill with other stuff, namely a bad bought with pnemonia, which turned into whooping cough, which incidently fixed my back...
There had been rental issues for over 2 years with a nasty septic tank problem in the midst of my stawberry patch, and just back in time my wife had been rear ended in her car.. We had been pre approved for a first home loan, which all fell thru, due to wild increased prices state and seemingly now nation wide..
So for the first time ever we decided to use the funds we had planned to use to put down on a place, instead to see the USA, for just 90 days....
That didn't work out either, as we left in mid July and crashed Aug 9th, and so spend 30 days on Pine Ridge where we crashed to get the bike fixed and heal some.
My wife was cut on her elbow, and bruised her hip in the bone. While I broke 3 ribs and was bruised similarly..
There wasn't any home place to return to so we left Pine Ridge on Sept 9th and continued anyway...
Getting back here was a bit of a wait too, getting a system set up, and so here i am.... So were were on the road some 10 months, and then more getting a place, while living in a van, seeking work..
Some people who did chat with me no longer do, and that is what I wonder about...
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When all else fails read the instructions.
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purpleydog
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Re: Out Of Cycle Instructions
« Reply #23 on: Apr 12th, 2007, 5:43pm » |
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Ghost
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Re: Out Of Cycle Instructions
« Reply #24 on: Apr 12th, 2007, 5:47pm » |
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I vote to tag this to stay on the top.
You are right Chuck soooooo right.
If Lovin you is wrong, Jonny dont want to be right! 
Mike
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