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Topic: Thanks supporters (Read 330 times) |
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rickyshot
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Thanks supporters
« on: Oct 10th, 2006, 7:43pm » |
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Yes I have started a thread in defence of our supporters. How many of y'all stood up at nights with your loved one with CH. How many family events were missed or plans got mucked up because of a hit for your loved one. How much of your dollars go for meds too? How many times have you felt so helpless because there was really nothing you could do? How many times you bit your tongue because your loved one with CH isn't always being so nice, cursing, anger, depression etc.
Hell I KNOW I am not easy to live with. When I first got this condition I was 30 years old and my kids were young. I could never afford medical care or meds. During high kips I would run around the house tearing up things, slap the kids etc. You think that was a picnic for them? I always feel so guilty about it. And my kids are grown and love me and say they understand. My oldest said when I came back from the convention see mommy there are others like you.
Yeah sure our supporters will not feel the physical pain of CH but the emotional pain can be just as bad. Yeah I said it and I have had my share of kip 10's.
You know Kevin saw me go through a hit and said now I know what it is to be a supporter and it is not easy. I am glad I found someone with ch but to y'all supporters who put up with this shit ( and you don't have to)
THANK YOU.
'
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JeffB
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Re: Thanks supporters
« Reply #1 on: Oct 10th, 2006, 7:50pm » |
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Here, here!
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AussieBrian
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Got beer?
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Re: Thanks supporters
« Reply #2 on: Oct 10th, 2006, 8:02pm » |
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CH is bad enough, I'd never make it as a supporter.
Here's cheers and beers to all of 'em.
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BMoneeTheMoneeMan
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Re: Thanks supporters
« Reply #3 on: Oct 10th, 2006, 8:09pm » |
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I second that. Or third....
yes, suffering sucks n stuff. If i knew that my wife sufferd from terrible pain and all that comes with it, I would absolutely DIE with the helplessness of it. I would prefer to be the sufferer (for selfish reasons) I think in a lot of respects it's easier. If i saw my wife banging her head against the counter writhing in pain, I would go postal or something.
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"Fool me once, shame on, shame on you. Fool - can't get fooled again"
Think of how stupid the average person is, and then realize half the population is stupider than that.
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chewy
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Just ask some of the old timer supporters what my feelings are about supporters.
Ask Margi. She's REALLY old.
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Fredmyyster
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Re: Thanks supporters
« Reply #5 on: Oct 10th, 2006, 10:24pm » |
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Im 46 now , i have been a CHead since i was 15 and my children are 15 and 20 and neither of them have ever seen me while being hit. I have always hid it from them. I dont know how but i always have. Luckily i only cycle every 3 to 4 years.... I just always thought it would scare um.
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LeLimey
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Re: Thanks supporters
« Reply #6 on: Oct 11th, 2006, 6:11am » |
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I would sooner be a sufferer than a supporter any day of the week.
I want to run away when Jasper is getting hit, I want to hide. I don't want to face it. I have to, I have no choice but that doesn't mean I don't want to just run as far as I can.
To see someone you love in that much pain that they just want to hurt themselves more to make it go away, to see a child swinging his head at a wall in a frenzy is more than ANYONE could bear.
You don't have to know that pain to have your heart break.
You don't have to know that pain to be devastated, frightened, hurt at being yelled at and hit out at yourself.
You don't have to know that pain to hate it.
You don't have to know that pain to dread it coming again.
To willingly put yourself into a place where you are ignored, not spoken to then begged for help. To have someone ask you to kill them because they can't take it anymore, to watch the person you love with all your heart become unrecognisable and to come back for more, day in and day out?
There isn't a medal the army has that covers this kind of valour.
ALL our supporters have my undying gratitude and appreciation, my support for them and my love because without MY supporters I couldn't keep going. Some of my supporters are ch'ers and some aren't but all are equal in my eyes and in their love for me.
God bless all our supporters. Oh and God, thank you. That was a job well done.
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sandie99
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Re: Thanks supporters
« Reply #7 on: Oct 11th, 2006, 6:47am » |
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Most of my supporters are right here, some aren't. But you all mean the world to me and I'm grateful for your support no matter in what manner it comes my way.  Thank you!!!!
If I coulf choose between a sufferer or a supporter, I'd probably pick a supporter. I'm a lot better in that. I feel guilty when I hurt and need help...I'd rather help others any day! That's probably why I tried for so long to hide my hits from others. I must admit that I hate getting hit when other people are around, but I've stopped hiding it.
I wish lots of strength to all the supporters and lots of PF time to all the sufferers. Let's take care of each other.
Best wishes,
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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roy21302
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Re: Thanks supporters
« Reply #8 on: Oct 11th, 2006, 10:00am » |
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It beats me how my wife has stuck with me through 30 years of it, she should have chest (or should that be breast) of medals, she has not, but I hope she sure knows that I love more than ever now and always will --- thanks Cheers Roy 
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Margi
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Re: Thanks supporters
« Reply #9 on: Oct 11th, 2006, 10:21am » |
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on Oct 10th, 2006, 8:50pm, chewy wrote:Just ask some of the old timer supporters what my feelings are about supporters.
Ask Margi. She's REALLY old. |
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But you'll always be older than me, sweetheart. 
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thomas
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Re: Thanks supporters
« Reply #10 on: Oct 11th, 2006, 10:48am » |
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I'd hate to think of what this place would be like without..... oh let's see...... hmmmmmmmm Minnie, Woobie, Leesa, Cathi 04, Jackie, Margi and Cootie. I know they are some of my favorite ladies and have always extended a hand in friendship or a loving, supporting hug when I needed it, I'm sure I'm not the only person that holds these ladies close to my heart.
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| « Last Edit: Oct 11th, 2006, 10:48am by thomas » |
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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JDH
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Re: Thanks supporters
« Reply #11 on: Oct 11th, 2006, 10:56am » |
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on Oct 11th, 2006, 10:48am, thomas wrote:| I'm sure I'm not the only person that holds these ladies close to my heart. |
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Nope, you're not the only one T.
Jim
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It's not what you know, it's what you can prove.
ECH established 1985
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thomas
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Re: Thanks supporters
« Reply #12 on: Oct 11th, 2006, 11:12am » |
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on Oct 11th, 2006, 10:56am, JDH wrote:
Nope, you're not the only one T.
Jim
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Hey, and I can't forget Sue either. She takes care of my bro.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Yorky
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Re: Thanks supporters
« Reply #13 on: Oct 11th, 2006, 11:55am » |
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on Oct 10th, 2006, 7:43pm, rickyshot wrote:Yes I have started a thread in defence of our supporters. How many of y'all stood up at nights with your loved one with CH. How many family events were missed or plans got mucked up because of a hit for your loved one. How much of your dollars go for meds too? How many times have you felt so helpless because there was really nothing you could do? How many times you bit your tongue because your loved one with CH isn't always being so nice, cursing, anger, depression etc.
Hell I KNOW I am not easy to live with. When I first got this condition I was 30 years old and my kids were young. I could never afford medical care or meds. During high kips I would run around the house tearing up things, slap the kids etc. You think that was a picnic for them? I always feel so guilty about it. And my kids are grown and love me and say they understand. My oldest said when I came back from the convention see mommy there are others like you.
Yeah sure our supporters will not feel the physical pain of CH but the emotional pain can be just as bad. Yeah I said it and I have had my share of kip 10's.
You know Kevin saw me go through a hit and said now I know what it is to be a supporter and it is not easy. I am glad I found someone with ch but to y'all supporters who put up with this shit ( and you don't have to)
THANK YOU.
' |
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today is a gift.....thats why it is called the
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JDH
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Re: Thanks supporters
« Reply #14 on: Oct 11th, 2006, 12:02pm » |
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on Oct 11th, 2006, 11:12am, thomas wrote:
Hey, and I can't forget Sue either. She takes care of my bro. |
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Fuckeneh she does!
There's nobody I'd rather have drive me to the ER in the middle of the night than her
Jim
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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Lizzie2
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Re: Thanks supporters
« Reply #15 on: Oct 11th, 2006, 1:54pm » |
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And don't forget Pep either!! She's another one who has always been there for CH'ers.
Helen - I love what you wrote, especially the part about not having to know the pain to have those feelings. It reminds me yet again of being on that train. I know I keep talking about that (sorry Matt), but that seems to have really stuck with me and was a traumatic thing to go through, even if I didn't realize it at the time. For Matt it was absolutely horrible, but outside of that, I have never felt so helpless or so upset in seeing someone suffer. And I am a nurse.... And beyond that, you saw what the guy and girl across from us were saying/doing. That kid was even text messaging his buddies in med school to ask if they knew what clusters were. And he went on to say that he had really wanted to help, but didn't know what to do. They didn't even know our names or a single thing about us, and yet they were very upset by seeing someone in that pain and not being able to help. If two complete strangers can have that kind of reaction, just think how magnified it is in our supporters...!
I'm another one who doesn't have a supporter really. I said this in another thread, but I find that most of my supporters are when I'm around other clusterheads. The first time this happened was in Nashville....Big Dan stayed with me for every single hit. He ran and got ice and the key to the suite where we had the O2...and when, during my 2nd hit, we ran out of O2, he ran to get more and MarkC and Luke came running up the hall with more oxygen. When BigDan had left me that time, I wasn't that bad off, but by the time he came back, I was pacing and shaking and Luke even said that one pupil was larger than the other. I remember Mark asking me if I wanted O2, and I was so beside myself in pain that I didn't know, and he shoved the mask in my face because he knew that was what I needed.
And then in England - Helen knew each time I was getting hit even before I realized it. She saw my obvious tension and just knew something wasn't right with me. She always had oxygen available and helped in other ways, too. It was also a great support to have Matt and Dape around as I got hit that night, too. That's why I was wearing sunglasses in the pic of Dape, Julie, and me....I had gotten hit awhile before that, but still didn't feel like being in the light.
When Matt got hit during the days I was still in England, I tried anything I could think of. I just cannot stand to see another person get hit and not be able to DO something. That's why that train ride was so freaking awful. I couldn't do anything...although I had bought him 2 cups of coffee in the station.
It sucks more than anything to see someone else getting hit...and I don't believe it matters if you, yourself, get clusters or not. It is still a very strong reaction to seeing someone else in such an enormous amount of pain. Some days, I'm very grateful that there is no supporter here to witness me in my bad moments, even though I do often wish for someone else around in general! And I am not around any other cluster sufferers on a regular basis to face the pain of being a supporter except once in awhile.
Thank you, supporters - each and every one....both with clusters and without and on this board and not. Each and every one of you makes a HUGE difference in the life of a CH'er....and we couldn't do it without you!!
Hugz,
Carrie
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deltadarlin
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Re: Thanks supporters
« Reply #16 on: Oct 11th, 2006, 4:23pm » |
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Thank-you one and all for the pat on the back. PL259 started his headaches around 24-25 years ago and we were lucky enough that our good doctor identified them fairly quickly. Now, it was a long time before the damned things were under control and he still went into cycle every so often.
Those times were scary as hell and there was more than one instance that I almost left, simply because I didn't have the mental/emotional reserve to deal with this monster. There were times that he got so bad (as we all know, some ch'ers react rather angrily to those around them when they are getting hit) that if I saw a hit that looked like it wasn't going to be able to be controlled, I'd grab my then toddler and leave the house and stay gone long enough that I knew (a) the hit had passed or (b) he was passed out. I guess some people would think that cowardly, but, hell, I was scared.
In Dallas last year, he saw someone else get attacked by the beast and now he knows what it's like to be on that *other* side. Thankfully, he hasn't had a cycle in about 2 years , but everytime, I see him start to make a certain move, my heart stops and the panic hits, I can't help it.
Oh well, life's a bitch, then you die. Ain't that right? Lucky me, I'm hit with a double whammy. I'm also a supporter to my daughter who has a chronic illness and deals with chronic pain (try 24/7, 365 days a year of something on the pain scale of 3, when it stops at 5).
He always said that I was crazy, guess this proves it huh?
'darlin
don't need no medals or silly stuff like that, but hazard pay would damn well be appreciated
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| « Last Edit: Oct 11th, 2006, 4:24pm by deltadarlin » |
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