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Topic: can't find no title for the subject, sorry (Read 511 times) |
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Nimbus
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can't find no title for the subject, sorry
« on: Aug 31st, 2003, 10:20pm » |
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I'm a CH sufferer since about 5 or 6 years. This year was kinda hard and made me discover one thing: what it mean to be a man. It may seem evident at first but let me explain: I'm 26, have a wife and many relative anxious about my condition. They don't really know how to help but they try. Before, I was alway whinning about how hard it is but now I realized something: It is hard for the mates too. So here I go:
For me, to be a man mean being strong enough to:
1. Say it is fine when it isn't
2. Laugh loudly to dismiss the fear
3. Sing song to break throught the silence and chase the loneliness
and mostly:
4. Believe that tomorow will be better without knowing for sure that it will
There's more to it but that's enough for me. The sad thing is that I'm not strong enough to do those thing well. Are you?
I'm sorry to post this but I can't help. I just need to tell someone. Some nights, alone in the basement, I'm praying god or whatever it is to come and take me away since I don't have the courage to do this myself.
So right now I'm playing the game, like before, but this time with the firm beleif that I failed the test.
I'm living in Montreal, Canada. Does anybody have... I don't know... some thing, maybe a solution.
I often dream that someone understand without me having to explain. I often dream of myself crying in the arm of an angel. And please, don't judge me by this post alone, it is already hard enough to share that with others that don't know you.
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Charlie
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Re: can't find no title for the subject, sorry
« Reply #1 on: Aug 31st, 2003, 10:28pm » |
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You sound like many of us. You'll do fine and your coming here is a good sign that you are a man indeed.
Here’s a link to letter that you are encouraged to copy that is the best we have at explaining this horror. The second link is to a technique that was very helpful to me:
http://www.ouch-uk.org/ch/note_colleagues.cfm
http://www.netsync.net/users/charlies/
Charlie
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Carla_Comiter
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Re: can't find no title for the subject, sorry
« Reply #2 on: Aug 31st, 2003, 10:40pm » |
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Please know that you don't need to laugh when you want to cry. All of us here know that the pain is terrible, and at times we feel cursed, or helpless.
There is a lot of good information about medicine and other treatments on this website, please look around.
And just consider all of us as a net of cyber-angels, ready to hold you when you cry or rant, and ready to catch you when you feel lonely.
Welcome home.
Carla
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Nimbus
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Re: can't find no title for the subject, sorry
« Reply #3 on: Aug 31st, 2003, 10:48pm » |
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Thanks for the reply... I think that after all these years, I'm finally falling apart. I'm on the edge since so long. My mind is shatered and I really wonder how strong I really are. Can I take another year? I think, yes. But for how long? You see, this year it is my second cycle. I had my first one only a month ago. I'm... tired.
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tsayswhy
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Re: can't find no title for the subject, sorry
« Reply #4 on: Aug 31st, 2003, 11:07pm » |
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Hi u dont need a suject to post here i am new here too and these people with answer anything u post! nimbus i too hit rock buttom last week felt like i had no where else to go but down but coming to this site is what keeps me going stick with us. i too am from canada u are the first i met from here {ontario} email me if u want any time {IF U R GOING MY WAY I WILL WALK WITH U } nimbus u need to let your love ones read this site with u because until i asked my husband to read about C/h i too was alone tsayswhy
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if you are going my way---i will walk with you
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ClusterChuck
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Re: can't find no title for the subject, sorry
« Reply #5 on: Aug 31st, 2003, 11:27pm » |
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WOW Nimbus! Do I know what you are going through! I call it my "happy face" that I put on for family and friends. I keep trying to downplay how bad it is because I know that they really cannot relate to it. I can't stand to see the looks of pity in their eyes. Yes they love me, I know that, but they just haven't got the faintest idea of what a fucking bitch this is to deal with.
You asked if you can make it. I have no idea how many times I have asked that same question. All I know is that it has now been over 20 years I have played my act of being strong. I have no idea how I have made it to this point. This past year has been especially bad due to many family problems. Somehow, God, or someone has kept me from ending it all, so far. I don't know how or why.
I am new to this site, and I seriously think that if I had not found this site, and other people like me, I would not be here right now. I have been that close to chucking it all. I am normally very closed mouth about my problems, but for some reason, I feel comfortable talking about them here. And, dammit, it has helped. I don't think anyone here knows how much I cling to this site and what the people here have done for me. There is an old song, before your time, that refers to the clown, smiling on the outside, and crying on the inside. That is me. I portray a happy go lucky guy, full of jokes, and inside, I am dying. Never let anyone see the real me. Yet, somehow, I have done that here.
I am not ashamed to say, here, how often this "man" has cried myself to exhaustion. Nobody here (I don't think) thinks any less of me to know that. I hate the pain I go through. I hate that I am such a wishy-washy cry baby. I hate the fact that I am not strong enough of a "man" to face this head on. I hate the fact that the only thing I have to look forward to, is the next attach. I hate the fact that I have dealt with this for almost half my life.
I guess what I am trying to tell you, Nimbus, is that there are others here, at least me, who knows what you feel. I don't know about you, but that revalation was a HUGELY uplifting experience to me. I don't know if I am a very religeous person or not, but I sure pray and curse to God a lot. This site, and the people in it have done wonders to make me feel better about myself.
Use this site to scream, holler, and yell, rant and rage, or what ever else you need to do. They can take it. It is what this site does better than anything, they listen and sympathize, and try to help. You will never find a bigger bunch of open, caring hearts than you will here. Call me a wimpy sap, but this is where you will get the assistance that you need. Use it.
There is also a tremendous resevoir of knowledge about treatments that work and those that don't. Learn all you can. It can only help!
I am sorry if I got so long winded, but you really hit close to my heart, and I feel for you. If there is ANY way I can be of service, please do not be afraid to ask. It helps me to know that I can help someone else.
I am so sorry you have to be here, but I am glad you found us. Keep us (or me, at least) posted as to how you are doing. We REALLY do care!
Hoping We (or I) can help you
Chuck
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Thomas Fuller
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stevegeebe
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Re: can't find no title for the subject, sorry
« Reply #6 on: Sep 1st, 2003, 12:11am » |
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Stay in the game Pal...just stay in the game.
You'll win. You'll see.
Steve G
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Donna
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Re: can't find no title for the subject, sorry
« Reply #7 on: Sep 1st, 2003, 7:21am » |
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Nimbus...the best thing that can happen to a clusterhead is finding this site. It has taken years for all of us to contribute and compile what helps most of us and what doesn't. Read all you can.....make copies for your doc.
What meds are you taking, by the way? Are they really helping you?
Bring your wife to this site too. Look at the headings and you will see that we have help for supporters here and help for the whole family at clusterbuds@hotmail.com
That e-mail address represents our Family Services Team, which is listed under OUCH in the left hand margin. Read all about OUCH.....it's our organization and the initials stand for Organization for Understanding Cluster Headaches. You will find Family Services Team there under Cluster Help. Look it over and you will see that there are different catagories.
Sometimes supporters are afraid because they don't know how to help..........they don't know that most clusterheads can't tolerate conversation while having a headache. Have your supporter come here for the sake of her feelings too......there's a lot for both of you to learn and share.
Stay with us..........we need each other. You WILL find strength here because you will be with people who have felt just like you do now......but we are no longer alone and that makes all the difference in the world. You will find somebody here to listen, hold your cyber hand and offer help.......almost always.
Hugs and Prayers
Donna
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Nimbus
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Re: can't find no title for the subject, sorry
« Reply #8 on: Sep 1st, 2003, 7:25am » |
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I feel better this morning (even thought I didn't sleep much that four hours).
Have you ever met someone with CH? I think I'm freaking because I knew one without knewing he had this trouble. He was a great family man, a man implicated a lot in my hometown. An always smiling and joking guy.
Some years ago, he shot himself in the head. Just after we learned that he was suffering from CH since about ten years.
I have yet to met someone with CH again.
I was thinking about starting a... let's say a "support group" in Montreal but I don't know anyone and I doubt that we are numerous enough to do so. I imagine that, two people who don't speak the same language (I'm french) ranting, whinning over a donut and a coffee.
If your from Montreal, Canada, and feel like so, drop me a line.
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Nimbus
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Re: can't find no title for the subject, sorry
« Reply #9 on: Sep 1st, 2003, 7:34am » |
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I want to thank you all.
It is really helpfull to come here.
Thank you all. It would be a lie to say that I didn't had a tears or two reading your posts.
Last night I was alone and pretty much terrified... but you were there.
And Charlie. You're right, the link you provided me about the doc to distribute... I think it is the most accurate description of a CH. For the method, we'll see.
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Donna
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Re: can't find no title for the subject, sorry
« Reply #10 on: Sep 1st, 2003, 7:42am » |
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You are in for one big surprise! Check out the OUCH site and you will see that we have yearly conventions, many of us have met (and the feeling is absolutely unbelievable) and we often have small gatherings in our own areas.
Also, if you click on this http://www.pahlow.net/ch/clusterheads.htm
you will see pictures of many of us.
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rumplestiltskin
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...theres as much bad info "out there" about "being a man" as there is about CH.
It sounds like you are on the verge of knowing that bottling up all yer feelings can only lead to a system breakdown of one kind or the other. Yes we do have to endure those moments of extreme pain all by ourselves. Butt then we must learn to come out from behind that locked door and walk in the sunshine.
A good friend of mine has Alzheimers. Because I have learned so much about that disease, I know what to expect from him and can be constructively supportive. Give those close to you that same wealth about CH. You first have to be convinced that it won't kill you before you can convince others.
Learn how to deal with CH so that you can learn how to deal with CH so that you can learn how to deal with CH so that you can learn how to deal with CH so that you can learn how to deal with CH.
...and unlearn what you know about being a "real man". Open a new door.
Love
den
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ClusterChuck
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Re: can't find no title for the subject, sorry
« Reply #12 on: Sep 1st, 2003, 8:19am » |
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Nimbus, if you click on the button to the left "where we live" and go to Non United States, and then go to Canada, you will see about ten people there from Montreal. There are more there than you thought! Maybe one, or more, of them would be willing to meet you.
If you click on their name, it will show you an email address, if they have included it. Do not try to send them an email from there, as I think there is a problem with it. But make note of their address, and then go to your normal mail handler program and see what sort of responce you get.
Good luck, and let us know if we can be of any more help. We want to help you!
Chuck
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goaway
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Re: can't find no title for the subject, sorry
« Reply #13 on: Sep 1st, 2003, 9:12am » |
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Hi guy!
Wow, you can say all of that again....
I was in law school when my first episode occurred. One minute I was walking down the hall, the next minute I was sitting on the floor with other students asking me if I was OK (multiple diagnostic tests confirmed no stroke).
Anyway, after 16+ years of the beast, I, like everyone else on this site, am exhausted. So many times I have scared myself with my own thoughts. How nice and easy it would be to just..................
But you know what? Despite the beast, I have so many other great things in my life. My family, friends, flyfishing, etc... Bet you do too, don't you?
The point is, you ARE coping with it. You ARE being the man. You DO care. And you (and those around you) are certainly the better for it. Just look around and see.
Finding this site was a great event for me. I believe that it and those wonderful CH folks out there logging in are true blessings. There are some real honest to goodness HEROES on this site out there.
Your mission, Nimbus (should you choose to accept it), is to remember WHY you haven't gone and done something drastic to yourself. To remember that you DO have positives in your life. To remember that YOU DO COUNT, not just to yourself, but to the rest of us out here as well.
Find another CH's entry and respond to them in a positive way. Help one of us through our walk with the beast. In doing so you will have found another way to fight your own beast. That's the key, each day, in every way, we all keep finding ways to fight the beast.
I cannot tell you how glad I am that you found us. WELCOME HOME!!!!
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Cooked Brain
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Re: can't find no title for the subject, sorry
« Reply #14 on: Sep 1st, 2003, 9:26am » |
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Hi Nimbus,
welcome to the board. I was at the point you are now almost a year ago. And that is about the time I first came on this site. The feelings after coming here the first times and sharing with fellow sufferers were also the same 
Coming here is the first step in the right direction. Do all the reading you need to educate yourself, family, friends and even drs. If you have the need to rage and roar then do so, we'll be here to listen. So what about any medication, have you seen a physician yet?
hope you will do well, it's a long and hard game but you CAN win!
pfdan
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Prense
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Re: can't find no title for the subject, sorry
« Reply #15 on: Sep 1st, 2003, 9:57am » |
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Greetings Nimbus,
Find some good things to think about...although this is your second cycle this year, you are not chronic. My "cycle" started 10 years ago. I still am not on any medication that reduces frequency/severity. I still do not have ANYTHING to take during an attack. I still have hope though that a doc will FINALLY listen to me and get me on something that works.
Accept that your family (supporters) will never completely understand what you go through. Also, know that you will not completely understand what they go through. It has nothing to do with "being a man" to me. It is all about surviving and kicking some beast ass! Many women here do it too!
Welcome aboard!
Chris
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Miss_Deleny
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Re: can't find no title for the subject, sorry
« Reply #16 on: Sep 1st, 2003, 10:23am » |
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Firstly, let me say WELCOME! I'm sorry you had to find us, but glad that you did!
Being a supporter (Prense's), I cannot relate to the pain you are going through but I can relate to the feeling of not being able to help when he is having an attack. The one thing that did help me was him finding this site. I have looked around and have read, read, read what is here and in the links to the left. Although I will never know the pain, I can now understand more of what he, as well as others here, are going through.
My best advice to you for your wife, relatives and friends, is to have them come here and read, read, read! This will help them to know more about what CH is and what you are going through .. in return, it will help them knowing that there are others out there that feel as helpless as they do when you are having an attack.
Even though we supporter do not feel the pain that you CHer's do, we still do feel pain and knowing that we are not alone and what we are feeling is "normal" helps us help you.
Wishing PFDaN for you and all here,
~April~
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Linda T
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Re: can't find no title for the subject, sorry
« Reply #17 on: Sep 1st, 2003, 4:00pm » |
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Hi Nimbus and welcome.
You will get through this. Not as easy as this sounds, I know. Last year I was just about where you are now. Maybe rock bottom. I had terrible thoughts along the way. I was ready to leave my then 4 year old son thinking that he was better off without me. How we seem to be able to justify anything just to be relieved of the pain!
After a terribly loooong self-pity party, I knew that I had to change my perspective on things or I was not going to make it. I stopped begging God to stop the pain and began to pray for strength to deal with it. I started giving myself pep talks while standing under the hottest showers I could waiting for the pain to subside. The pep talks were along the lines of "I'm not gonna let this beast kick my ass." "I'll get him this time." "Maybe this is the last." Once the pain ended, I would congratulate myself for making it through. Now, I know this may sound silly to some of you but, you know, it helped. It could help you too. Eventually, my cycle ended and all of this became just a truly frightening memory. I can live with that.
Remember this: you're alive, you have nothing fatal (to the best of my knowledge) and there ARE others who are worse off then many of us here.
Things will get better. You'll see. Just keep the faith.
Wishing you all PFDAN always, Linda T
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What a long, strange trip it's been!
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Opus
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Re: can't find no title for the subject, sorry
« Reply #18 on: Sep 1st, 2003, 6:30pm » |
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Nimbus,
What you said about wanting God to take you away, was this during a CH, I'm sure all of us want it to end when the pain hits the Kip8-10 level ( see the kip scale on the left) . If you are Pain Free when saying this then that's ok too. There is nothing wrong with admitting you can do it anymore, I am far past that level and Ch is just a small part. The first strength is realizing you are week and asking for help. The second is not basing your self worth on the opinions of others. I hope this helps in a small way.
Opus/Paul
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Linda_Howell
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Re: can't find no title for the subject, sorry
« Reply #19 on: Sep 1st, 2003, 6:49pm » |
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Nimbus,
I don't trust a man who can't or won't cry when in mental or emotional pain. Refer to Dens post re: there's as much mis-information on what defines a man as there is about clusters.
Now, I have probably mis-read your posts but I have a question.
Your 1st. post said "I have been a CH sufferer since about 5 or 6" Did you mean years old or FOR 5 or 6 years.????
Then further down you posted "this is my second cycle" my first was a month ago." So I am confused.
There are several people living in Canada. Please check out the where we live section...LindaH
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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OneEyeBlind
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Re: can't find no title for the subject, sorry
« Reply #20 on: Sep 1st, 2003, 7:20pm » |
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Ahhhh shit, ya strung a cord in my heart that has been playing for a long time now. Suffering and not yet willing to share it. Let it go, and let US be there for ya. I'm already starting the positive vibes for ya. Can ya feel em ???????????????????
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StanTheMan
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Re: can't find no title for the subject, sorry
« Reply #21 on: Sep 1st, 2003, 8:51pm » |
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Nimbus,
A couple things:
First of all, I agree with much that has already been said here. You found a very good place to find help, support, vent, ask questions, etc. You're surrounded by a great group of folks who truly understand what this terrible disorder can put you through.
As to your original post regarding the definition of a man, well....I can't say I fully agree with you there -- at least not entirely.
The notion that a "real man" should ALWAYS put put up the "tough exterior" and smile ALL the time, and not let anyone know something's wrong is just plain silly.
It takes a bigger man (or woman) to admit they can't do this "on their own" and cry out for help. Which of course, is what you are trying do right now, right?
OK... that said... Keep fighting the good fight. You can still "have a life" even amidst the pain.
Many people here can attest to this.
Learn all you can from this site and the good people here.
Let us know how we can help you. Take care.
Hugs and prayers,
Stan 
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miCHel
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Re: can't find no title for the subject, sorry
« Reply #22 on: Sep 2nd, 2003, 12:11pm » |
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Salut Nimbus,
I am from Montreal as well. And boy, can I relate to what you are going through. As a matter of fact, most people here can relate. That's why it is such a great place.
I will send you a private mail (in French...). A couple of people on this site have helped me tremendously to get my shit together. If I can help, it will be my pleasure.
Hang in there!
miCHel
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Good one Scotty! Now beam down my clothes...
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don
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Re: can't find no title for the subject, sorry
« Reply #23 on: Sep 2nd, 2003, 12:50pm » |
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Quote:For me, to be a man mean being strong enough to:
1. Say it is fine when it isn't
2. Laugh loudly to dismiss the fear |
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Gotta disagree on the first two.
1. Be able to say things suck when they suck and ask for help.
2. Face down the fear and come to terms with it.
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Dont think of CH as a test. Look at it as a challenge and vigilantly try to meet the challenge.
Quote:| I often dream that someone understand without me having to explain. |
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Your dream just came through with the people of CH. com
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Cooked Brain
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Re: can't find no title for the subject, sorry
« Reply #24 on: Sep 2nd, 2003, 1:13pm » |
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all well about the warm welcome but what about the
MEDS Nimbus ? ???
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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