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Topic: sharing (Read 1203 times) |
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miapet
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what doesn't kill me makes me stronger
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D is the one who originally found this site. He gave me the URL so I could look at it. Up until then, he had always hidden the beast from me. He never let me see him during an attack. He never talked about it. He would always 'get in postion' to battle the beast.
I read the home page, and I cried . . . I looked at the message boards . . .and I cried some more. All I could do was think, "Those poor people . . .how awful for them." D had done such a good job of hiding them from me, that I never thought he was one of 'those poor people' . . .
When the realization hit that he was one of 'those poor people' it was awful . . .I blamed myself for not doing something sooner (getting the info here, etc) . . .and for not taking a proactive stance. I don't know how many 9s and 10s we cold turkied together . . .I know they are all etched in my memory . ..
Through this all, D has trusted my research, and accepted my beliefs in what we should and shouldn't do. (Okay, so he already knew about all the pharmacy that wouldn't work, since he had already tried everything except the DHE drip.) He has never asked me why it took me so long to get it together and focus on the beast . . . and he never knew, until tonight, how I have been beating myself up for taking so damn long. It wouldn't have been so bad if it had only taken a few weeks . . .but it took me several years to do more than read that front page and click all the tabs . . .I couldn't undertand why he didn't want doctors . . .until I read how the doctors didn't really seem to be helping anyone . . .then I understood . . .
I wish I would have done it all sooner . . .but I'm glad I finally did it . ..
*positive light and energy*
miapet
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| « Last Edit: Nov 1st, 2004, 12:45am by miapet » |
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Clusterbusters Rock
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don
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Quote:| until I read how the doctors didn't really seem to be helping anyone |
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Not true. Many people, including myself are helped by Doctors. Why do you think everyone is encouraged to see one?
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yikes-another-one
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Re: sharing
« Reply #2 on: Nov 1st, 2004, 7:28am » |
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Because we are famous for
having Intuition
and alwasy seem to connect invisible dots
and read so much betweenthe lines
our spouses are convinced we are mind readers.
Direct communitcation can be quite an endeavor.
Once I wasted 4 hours....waiting for my husband to
get dressed and come shopping with me.
This was because at 10am he turned to me
and said, "In a little while we are goign to go shopping."
So I stopped loading the dishwasher, and put off
laundry and got properly dressed, and
by noon, i was hungry, so I made a quite snack...
thinking we might as well go out to lunch while shopping
and I waited and paced and waited....
until 2pm...when I gave up on him and
threw in a load of laundry (with bleach)
At which point he comes out of his "den"
and asks, "Ready?"
At which point I lost it.....
"NO," I shouted." I waited 4 hours for you, now you will
wait 24 minutes for the laundry to finish"....yada,yada
yada.
He looked very baffled and defensively added,
"I didn't mean right that minute"
since then he has been more careful to fully
explain any itinerary he creates. If he doens't
give me an ETD (esitmated time of departure)
I ask for it.... lol.
That was just a simply shopping trip
fouled up by lack of communication.
I can understand how they lead you to something
important...but don't fill in the relavant info.
You cannot change the past. So move foreward,
knowing you are doing all you can now.....
I hope he has pfdan and that you forgive yourself,
and more inportantly you forgive him for shutting
you out.... you know men. They suffer in private,
unless they have the flu.....wink.
Bless you!
TJ
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Psalm 23 - Goodness and mercy shall follow US all the days of our lives and WE will dwell in the house of LOVE forever.
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don
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Quote:Once I wasted 4 hours....waiting for my husband to
get dressed and come shopping with me. |
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Oh you poor poor woman.
Did your husband have the audacity to get attacked while you were waiting to go shopping?
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unsolved1
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Mia,
Sounds like D is really lucky to have you.
D,
Don't let her go !!
My last girlfriend didn't "want to put up with all that shit".
Unsolved
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nani
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Re: sharing
« Reply #5 on: Nov 1st, 2004, 8:46am » |
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Quote:| Did your husband have the audacity to get attacked while you were waiting to go shopping? |
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Don - I think she was referring to a lack of communication, not a CH story. See how you men are!
Anyway - miapet- don't beat yourself up, you are a fabulous supporter. D is lucky to have you (as I am lucky to have my amazing husband). And yes- some of us do find relief from doctors.
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Others may come and go, but MY power is MINE.
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Kevin_M
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Re: sharing
« Reply #6 on: Nov 1st, 2004, 9:02am » |
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on Nov 1st, 2004, 8:46am, nani wrote:
Don - I think she was referring to a lack of communication... See how you men are! |
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Sheesh, and Don was our elected ambassador and representative of all men, brave enough to venture into a thread entitled "sharing", he was the best we...
Kevin M
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| « Last Edit: Nov 1st, 2004, 9:20am by Kevin_M » |
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DerbyDemon
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Pardon me. Is that a dagger in my head?
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Re: sharing
« Reply #7 on: Nov 1st, 2004, 9:52am » |
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I am the king of my domain. Ergo...I suffer my CHs when and where I get them. Now when my 7 and 5 year old sons are told to do something they don't want to do, they immediately tell me they have "headaches."
Go figure.
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don
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Quote:| Sheesh, and Don was our elected ambassador and representative of all men, brave enough to venture into a thread entitled "sharing", |
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LMAO! Brave enough or stupid enough ?
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miapet
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what doesn't kill me makes me stronger
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Re: sharing
« Reply #9 on: Nov 1st, 2004, 10:46pm » |
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TJ,
I am not mad at D for trying to protect me from the pain . . .but, I do kick myself for not starting the fight earlier *g*
Unsolved, thanks *smiles* . .I thought the best day of my life was when D & I met . . .but it just keeps getting better and better *s* . . .when you meet 'the one' it doesn't matter what issues either have, you find a way to work through them . . .and I believe 'the one' is out there for everyone *smiles*
Don, if docs are so much help . . then why are so many still in pain? You know, I would vote for your call on why you responded to this thread . . it wasn't because you were brave . .it appears, to me, that you like whack/slam people when ever you get the chance. But, don't worry, I forgive you . . .I'm sure you're in pain . .maybe you should call your doctor?
*positive light and energy*
miapet
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Clusterbusters Rock
www.clusterbusters.com
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Kevin_M
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Re: sharing
« Reply #10 on: Nov 2nd, 2004, 8:30am » |
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on Nov 1st, 2004, 10:46pm, miapet wrote:| Don, if docs are so much help . . then why are so many still in pain? |
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I'd hate to have gotten through so many years without them. Maybe I wouldn't have gotten through.
Quote:| it appears, to me, that you like whack/slam people when ever you get the chance. But, don't worry, I forgive you . . .I'm sure you're in pain . .maybe you should call your doctor? |
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???
Kevin M
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don
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Quote:| But, don't worry, I forgive you . . .I'm sure you're in pain |
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Nope......not in pain.
Sure as hell not looking for forgiveness!
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D
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Former Chronic
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Re: sharing
« Reply #12 on: Nov 2nd, 2004, 8:51pm » |
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Don:
Mister, you are arrogant...You need a trip behind the barn where in Texas some old fashion manners would be taught, doing you a world of good. And I would volunteer to be first in line to escort you behind the barn for your first lesson on becoming a gentleman.
D
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| « Last Edit: Nov 2nd, 2004, 8:53pm by D » |
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Cluster Busters Rock !
www.clusterbusters.com
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Kris_in_SJ
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Re: sharing
« Reply #13 on: Nov 2nd, 2004, 9:16pm » |
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Thanks for sharing Miapet.
Please don't beat yourself up over this. The fact is, you did what you had to. Avoidance is always the first response to something unthinkable.
Ultimately, it has made you stronger as a couple, and together you've found what works. I think many are resistant to the therapy you've found. Personally, I'm doing a "happy dance" about the recent U.S. studies.
At any rate, venting is GOOD. I't's not only allowed, but encouraged.
Don - go back to your corner, and D - don't take it personally.
Many Hugs,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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don
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Quote:| You need a trip behind the barn where in Texas some old fashion manners would be taught, doing you a world of good. |
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Ya got that right! 
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Kevin_M
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Re: sharing
« Reply #15 on: Nov 2nd, 2004, 9:25pm » |
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on Nov 2nd, 2004, 8:51pm, D wrote:| And I would volunteer to be first in line to escort you behind the barn for your first lesson on becoming a gentleman. |
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Quote:it appears, to me, that you like whack/slam people when ever you get the chance.
*positive light and energy*
miapet |
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Kevin M
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| « Last Edit: Nov 2nd, 2004, 9:27pm by Kevin_M » |
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don
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Quote:| Don, if docs are so much help . . then why are so many still in pain? |
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Quote:maybe you should call your doctor?
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Actually my Docs office calls me on a pretty regular basis especially during the danger periods.
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| « Last Edit: Nov 3rd, 2004, 7:45am by don » |
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miapet
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what doesn't kill me makes me stronger
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Re: sharing
« Reply #17 on: Nov 3rd, 2004, 11:21pm » |
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Kris, thanks *s*
don . . .forgiving you wasn't for your benefit . . it was for mine . . .As for the remark about you liking to whack/slam people, it appears that you respond sarcastically to others at almost every opportunity . . .and I don't think many people need that, let alone appreciate it . .especially when they are asking questions or sharing something . . .that said, I have nothing more to say to you.
*positive light and energy*
miapet
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Clusterbusters Rock
www.clusterbusters.com
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Tom K
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Re: sharing
« Reply #18 on: Nov 4th, 2004, 7:11am » |
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on Nov 2nd, 2004, 8:51pm, D wrote:Don:
Mister, you are arrogant...You need a trip behind the barn where in Texas some old fashion manners would be taught, doing you a world of good. And I would volunteer to be first in line to escort you behind the barn for your first lesson on becoming a gentleman.
D
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D, that line is sooooo long you'd have to take a number...your number is...999,998. 
T
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yikes-another-one
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Re: sharing
« Reply #19 on: Nov 4th, 2004, 7:53am » |
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Sorry, had to take a little break because Don's comment
triggered my Late October Attack..... 
My husband doesn't get hits, I do.
He simply wasn't dressed because he was
"Relaxing" by surfing on the computer.....
(Surfing what...... I don't care....lol).
The point was, he had plans, but never clued me in.
TEAM-work fellas. You all love to pretend you
are lone wolves who never need help....
but the first time you can't remember where you put
your drill, boots, do-rag, and thing-a-majigy
Who do you call?
"Honey where's my drill?"
(like I raided his tool bench and stole the drill
to repair the leaning screen door that is on
his "ta-do" list....I don't have time for that!!!!)
"Where did you use it last?"
"Oh, yeah, that's right, Thanks hun."
(Pull-ease)
hahahahahahaahaha
Communication.
Gotta love it.
After 7 - 10 years, (that's how long the sentence
has been for me and what's his name....) I get
less and less....he has more toys, more fun, and
more "relaxing" time....Me? I have less communication,
less leash-line, and less money for household supplies
The one reason why I keep him around?
Cause he loves me.... wink.
When I get hit, he's my shelter....
he anchors the boat, and keeps the waves
from dragging me out to deep water.....
Just knowing he's close, is my safety net.
(he keeps me from searching for guns....)
and when the hits are mild, he reminds me
how to be thankful and greatful.... 
at one point I was so scared these things would
kill me, that the doctor was missing a diaganosis,
I started writing a goodbye letter.....
but he sat with me, and when the pain disappeared,
he wiped my teary eye, helped put the house back
into order and tucked me into bed.
That's the kind of help the doctor should prescribe.
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Psalm 23 - Goodness and mercy shall follow US all the days of our lives and WE will dwell in the house of LOVE forever.
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nani
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Re: sharing
« Reply #20 on: Nov 4th, 2004, 9:44am » |
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Quote:| .it appears, to me, that you like whack/slam people when ever you get the chance. |
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I spend a great deal of time making sure things are fair (why I can never be a coach "you guys are playing too well, let the other team have a chance...). Anyway I would like to let you all know that I take every opportunity to poke fun at don. It just seems like the right thing to do.
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| « Last Edit: Nov 4th, 2004, 9:46am by nani » |
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Kevin_M
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Re: sharing
« Reply #21 on: Nov 4th, 2004, 9:25pm » |
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on Nov 4th, 2004, 9:44am, nani wrote:| I take every opportunity to poke fun at don. It just seems like the right thing to do. |
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Well, seeing him go around in circles like a dog chasing his tail trying to get the crayon colored booger flicking target off his back with his shoe laces tied together could be fun.
Right thing to do? Remorsefully, no. As a moving target, the waxy crayon colored rings glance off all but the the wet ones. Should be magic marker.
Kevin M
Kevin M
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| « Last Edit: Nov 4th, 2004, 9:26pm by Kevin_M » |
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Pinkfloyd
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Re: sharing
« Reply #22 on: Nov 5th, 2004, 3:16am » |
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on Nov 1st, 2004, 12:32am, miapet wrote:
He has never asked me why it took me so long to get it together and focus on the beast . . . and he never knew, until tonight, how I have been beating myself up for taking so damn long. |
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This really is not something you should ever beat yourself up about Mia. This is one of those things that nature makes impossible to deal with adequately.
Men with Clusters....we are supposed to be the fixer-uppers. That's our role. When something goes wrong, we think it's our responsibility to fix it. Whether it's the roof leaking or our heads hurting...it's our job. When we can't fix our heads, or find someone that can, we feel a bit like a failure sometimes, just as if the roof was to continue leaking. Not something we like to talk about, our failures and how they adversely affect our lives and the lives of the people we love.
I'm sure the nurturing side of the women in our lives makes it just as painful to not be able to comfort us during the attacks. I think the main reason we hide during an attack is so we don't have to see the pain we feel we are causing, in the eyes of our loved ones.
Women with Clusters....I can only imagine (and I don't like imagining this at all) how much it must hurt them to see the pain in the eyes of the men in their lives. A pain that they, the fixers, can't help fix. One of my biggest fears all these years was to some day see my wife or kids in this type of pain...a pain I couldn't fix. I sometimes think that those fears hurt me in some ways, more deeply emotionally than the clusters themselves.
A lot of time, this hurt, this feeling of helplessness, comes out as anger. Men and women, angry they can't fix it, angry at the pain they are in, angry at the pain it causes for others we care about. Angry at how our kids are affected. During an attack, it's almost impossible to make someone feel even a little bit better or to ease the pain at all. How frustrating is that for the supporters. Talk about emotional torture day after day, year after year.
It's both interesting and difficult to see some of the stats from the surveys CB's are doing. 22% of the people that have completed the Quality of Life survey have lost a relationship directly due to cluster headaches. That's more than 1 out of every 5 people here and I imagine it's typical of this disease.
Your positive attitude, just like the other supporters here, helped keep that 22% as low as it is.
I don't necessarily think that those 22% that couldn't make it together because of some lack of caring or compassion. I prefer to think that the 78% that made it this far, was and is, due to an extraordinary amount of caring and understanding, on the behalf of the supporters.
My guess is, and D can confirm this or tell me I'm wrong, but when he showed you this site, he was probably saying, "this is what I have, I'm sorry." I don't think he was saying, "this is what I have, fix me."
I know these are all generalizations for the most part and I suppose some people think I'm way off base, and I may be in their particular situation, but that said.....
I lost a lot of things over the years due to clusters, but my opinions weren't one of them. I also didn't lose my supporter after 32 years of marriage (25 of those cluster affected) so I have a deep appreciation for supporters. I have a feeling you have someone living in your house that holds that same appreciation.
PF
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K-9
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Re: sharing
« Reply #23 on: Nov 5th, 2004, 3:41am » |
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Well said Pinkfloyd, no need for me to post anything else here.
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don
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Quote:| that said, I have nothing more to say to you. |
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My day is shot to hell.
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