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Topic: How do YOU cope? (Read 666 times) |
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frizzle
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How do YOU cope?
« on: Jul 5th, 2006, 9:30pm » |
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Been a terribly rough week......
how do you cope on a daily basis? I know some of you are chronic and others episodic. How do you get through the pain, the fear of the pain, the fear of the next one coming on?
Just the whole nasty mess in general?
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chewy
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Meds.
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vig
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Re: How do YOU cope?
« Reply #2 on: Jul 5th, 2006, 9:43pm » |
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having understanding people around to talk to helps a lot.
So does the knowledge that the pain will go away....
and believe it or not, some people have worse things wrong with them.
(I spent the weekend with my 9 year old niece with Cystic Fibrosis.... CH is nothing compared to her struggle)
Count your blessings and live the best you can.
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never, Never, NEVER quit. -Winston Churchill
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Sean_C
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Definately abortives and o2 have played a major role in coping "better" 
The med free days along with all the uneducated docs who didn't know crap were the worst days Frizzle.
Hang with us, there's lots of good reading, and lots of great folks who all know your pain all to well 
Hang tough, I promise it'll go away
Sean.................................
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E-Double
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Re: How do YOU cope?
« Reply #4 on: Jul 5th, 2006, 10:02pm » |
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I came to the realization that
" It is What it is so just live!"
I was deep down and depressed over these things and have just learned to deal.
Pain sucks but we will not die from them and there are plenty of things that are worse.
I'm chronic 2 + yrs and have gone med free.
For me I feel healthier and I'm better able to cope because I have all of my wits.
I use Oxygen to abort and if beyond desperate I might take an emergency jab......have to be really desperate and in public.
Hang in there and you will find your nitch
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Richr8
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Re: How do YOU cope?
« Reply #5 on: Jul 5th, 2006, 11:15pm » |
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on Jul 5th, 2006, 9:30pm, frizzle wrote:how do you cope on a daily basis? I know some of you are chronic and others episodic. How do you get through the pain, the fear of the pain, the fear of the next one coming on?
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I'm not sure that I cope well at all. My cycles always seem to end just before I kose my mind.
You'll make it too.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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spidey426
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Re: How do YOU cope?
« Reply #6 on: Jul 6th, 2006, 2:36am » |
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I cope by just knowing that it will eventually be over with. I cope by knowing I can get through my cycle without the CH getting the best of me, by knowing I'll be a stronger person because of it. I cope by trying to see the good side of having CH's.. once the cycle is over I feel great and enjoy my pain free days more.. it makes me realize the things I take for granted, ..like having a few drinks with friends and being able to go to bed and get a good night's sleep.. being able to go to the movies and not worry about having to leave.. just enjoying my days without constantly thinking --not IF-- but WHEN the next strike is gonna ruin my day. It makes me feel even closer to my close friends who help me deal with it, and understand, and who are so supportive. Just try to focus on the positives, not the negatives: )
pfw to you and God bless
spidey
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Bob_Johnson
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Re: How do YOU cope?
« Reply #7 on: Jul 6th, 2006, 7:12am » |
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When we read someone writing about their dread of CH or the anxiety of waiting for the next attack, we are seeing the emotional effects of CH. These reactions are not fixed even by good medical treatment of the Clusters.
This is the first few paragraphs from a longer article: You can find the entire piece on the OUCH site or I'll e-mail it to you if you will leave your address (using the instant message button.) (The whole thing is too large to be posted here.) The approach outlined to reduce suffering is developed from cognitive therapy, a well researched therapy used by mental health types. But don't ask for it unless you accept that it takes practice and commitment to make it work! There is no Imitrex injection for this problem.
------------------------------------------------------------------------ ----------------------------------------
AT THE HEART OF THESE PARAGRAPHS is the recognition that pain and suffering are rather different experiences which can and must be changed by rather different responses. The pain of our CH is the subject of many of the messages we exchange, the topic fills the medical literature we read, and is the primary purpose for the multiple visits to doctors.
Suffering is quite a different animal. It is an emotional/psychological condition which is often experienced even when there is no pain; it is commonly experienced as fear, anxiety, depression, hopelessness, dread, and fearful anticipation.
Suffering is a normal, even automatic, response to pain, loss (as in death, divorce, or other major losses), and a host of other difficult experiences. However, suffering can be intensified, sustained, and even created quite independently of any of these experiences. In the case of our CH, suffering is too often experienced when we are not having attacks.
The hard paradox is: WE CAN SUFFER EVEN WHEN WE ARE NOT IN PAIN! This is the paradox which we need to resolve if CH is not to be the controlling experience in life.
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Bob Johnson
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unsolved1
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Coping. wow. It's easier said than done ... but we must all learn to cope and go on with life. I've been chronic for 6 years now ... I can't always worry about the next attack. I stayed 'prepared' but try not to worry too much.
Meds, family, and support from this board help me the most. This site has been a life saver. Talking to people who really know and understand what you're going through really means alot !
This question has been asked here many times and many people have shared their experiences and thoughts. One of the best one's I've read was not too long ago by CarlD (I think, I could be wrong). His message was that he basically "flushes" his pain and anxiety away after each attack and not to worry about the next one. Worrying about the next one all the time will drive you insane! (trust me)
Goodluck and try not to worry about too much about the next attack. If it comes, it does. Deal with it then. (But be prepared anyway [always] with abortive and preventative meds, if you have some that work)
PF Wishes
UNsolved
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Mattrf
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Re: How do YOU cope?
« Reply #9 on: Jul 6th, 2006, 3:01pm » |
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Coping can be very hard, I have had a hard time like most but this site you will heir many say is a life saver and it truly is. Knowing you are not alone and being able to talk to people that truly understand your battle with this beast instead of someone just looking at you like hell it’s just a headache and wanting to rip there head off.
I think I am just now coming off of a seven month cycle, been PF for a day now and hopping I am coming off and not just getting a break, I have coped now well all the time but have made it through with the help of all the great family on this site and yes you have just became one of the family, and also the love of my wife and kids who have truly saved my life because I would have not made it without them.
One other thing I can say is keep the family you have that support you and try to understand close for support and the ones who don’t, ignore and try not to have to much contact they will just drag you down and make you more angry then the beast is already making you.
Come her often as you can post about anything and vent when ever you need to, there are always people her ready to listen and share.
Welcome to our funny farm.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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Charlotte
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Re: How do YOU cope?
« Reply #10 on: Jul 6th, 2006, 3:20pm » |
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This is a good question.
Bob Johnson has an article on pain vs suffering. We will have pain but our attitude makes the difference.
It is very tough. I'm chronic. I don't think I will ever get used to it, but I'm more comfortable (mentally & emotionally) at home. I save my meds for at work.
Getting hit every 2 hours quite a bit this year, sometimes closer together, sometimes farther apart. Had 4 days off in march but had a few migraine.
I do watercolors, and I used to paint an hour before work every day. I have not had a clear hour for awhile & I am trying a new approach. I set up 4 boards with quarter sheets of paper one day, today I set up my pallettes, and hopefully, tomorrow I will be painting.
At work, it takes me longer and is something of a struggle to do a full day's work, but I try to be very organized in between hits and just keep going while getting hit. Some very wierd errors occur, but I try to catch them and two of my coworkers sometimes help me without even being asked. My former supervisor (who retired) told me to ask for help when I need it.
It is a stuggle. I'm exhausted at times. But I have plans and I have people I love.
Charlotte
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| « Last Edit: Jul 6th, 2006, 3:22pm by Charlotte » |
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kimh
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Re: How do YOU cope?
« Reply #11 on: Jul 6th, 2006, 7:52pm » |
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This has become "key" for me. Meds and me went round and round until i was the flatsy doll on the cul-de'sac and the pain went on and on.
How do I cope? One attack at a time. Lots of frozen peas. Lots of walking and pacing. Lots of caffeine (vasoconstrictor ya know...) sumtimes i take a cold shower. sumtimes i take a hot bath (comfort - like the woumb.........)
Time has shown me that i won't die from this. Doctors have made me fantisize about homicide. People i knew all my life grappled to understand and failed miserably for the most part but for a few.
I cope Any Way I Can. Whatever helps you the most effectively is the best way for you***
One thing i have learned is that this disorder causes us to really THINK! What we do with our thoughts and reactions to a situation is what makes us who we are. Ehh? 
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Charlotte
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Re: How do YOU cope?
« Reply #12 on: Jul 6th, 2006, 8:09pm » |
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on Jul 6th, 2006, 7:52pm, kimh wrote:
One thing i have learned is that this disorder causes us to really THINK! What we do with our thoughts and reactions to a situation is what makes us who we are. |
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That is a very good observation.
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George_J
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Re: How do YOU cope?
« Reply #13 on: Jul 7th, 2006, 12:17am » |
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on Jul 6th, 2006, 7:52pm, kimh wrote:T
One thing i have learned is that this disorder causes us to really THINK! What we do with our thoughts and reactions to a situation is what makes us who we are. Ehh? |
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Good point.
Three questions really, so three answers:
After so many years, I no longer fear a hit that's coming on. It comes, it goes, and I won't die. I know that.
I don't get anxious about what the future will bring, because I don't control it.
As for coping with a hit, long answer--
I don't do meds. Not bragging, not proselytizing, just a personal decision.
Cautionary note: None of this will help with anything over a kip 8. When I get those, I dance with the best of them. It also won't work if your hits are short--mine are typically two hours or more long, and peak seven or eight times. I cope by distraction.
We all know you can't lie down, so sit up. And sit up straight, no slouching. ACCEPT that you're getting a hit, and DON'T FIGHT. Pick a spot where you're alone, and can concentrate, preferably dark. I know that light doesn't cause an aversion in cluster the way it does in migraines, but darkness helps. Get rid of any little LED lights on equipment or whatever. I'll explain later.
I know it will go against all your impulses, but DON'T PACE. Sit. Take deep, slow breaths.
Your trigeminal nerve is firing out of control. You can't voluntarily reduce its firing, nor can you control the level of pain you feel. In this sense, you're like a rabbit in a trap. Perhaps this is why biofeedback doesn't work in clusters, and why it feels as if you're being attacked by something outside. You can't control what's happening. But you are a human being, and not a rabbit in a trap, and you CAN control your reaction to the pain and your perception of the pain.
Inside the pain there is a knifepoint where it is most intense. Move your attention slowly away from the knifepoint to an area where the pain is less intense. My favorite location is just under the skin of my forehead on the headache side. This is really hard, and your attention will shift back to the knifepoint over and over, but relax, and move it away again. You don't want any LED lights on, because they can become a metaphor for the knifepoint. You want things fuzzy and diffuse.
Next, find the point on the back of your neck where the knot is. Rotate your neck to where it is, gradually, then past it, then back, over and over, rhythmically. Relax the muscles in your face and in your neck as much as possible. You'll look like a slack-jawed worm-fisherman, but who cares?
Do this for a while, and you'll enter a trance-like state where the pain still exists, but your attention will not be focused on it.
I'm convinced that our perception of pain increases our experience of it. This won't reduce your pain, but it can reduce your anxiety, your fear, and can reduce the trauma of the pain.
None of this will make sense to a non-clusterhead, I'm sure. But perhaps it will help someone new to clusters to cope. I hope so.
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
Draws in harmonica melodies
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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Weatherman
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Re: How do YOU cope?
« Reply #14 on: Jul 7th, 2006, 1:03am » |
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Man, the people that visit this site are really something special. I'm new to this site but in my short time here, their understanding and support has been a true blessing. Thank you all !!
The other crucial piece of the puzzle for me to cope is my doctor. It took years but I finally have a doc that knows and understands CH and will do everything in his power to make sure I have absolutely ANYTHING I need to get relief. If your doc hesitates at all to provide you with what you need to cope, get another doc...and another...and another until you get the right one.
Like all CH sufferers, even with the proper treatment, I sometimes get hit and get hit hard. When I do, I deal with that hit a lot like George from the previous entry does. Good info George. I also like O-2 and an icy towel on my head
Hang Tough
Come Here Often
Make Sure You Have The Right Doc
Good Luck & God Bless
Doug
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TxBasslady
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Re: How do YOU cope?
« Reply #15 on: Jul 7th, 2006, 3:07am » |
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I'm really sorry you've had a tough week.
CH threatens our sanity, attempts to take over our lives. It takes a toll not only on those of us who suffer, but on our families as well.
Vig is right.....as bad as we think CH is, there are others suffering and struggling with life threatning issues. I realize that this is not very comforting when the hits just keep coming....but keep the mindset that there's pain outside CH.
Seems like the more stuff I took to stop the pain, the worse it got. I don't have a regular CH cycle, even though I'm episodic. My hits are random....but most always at night. I try to never think about the next hit....I can only deal with one at a time, no sense in worrying about something I can't change anyway.
Depression can become a real problem with CH. All of us have been there.....our stories are really quite similar.
This site has been a life saver for many. When you feel all alone...and you feel that noone understands your pain, come here. You can vent, ask questions or spend your time reading some of the posts. I read on this forum for a year and 1/2 before I joined and posted.
The best part is that you realize you're not alone. Sometimes we need that extra support and understanding in order to make it through another day.
The ultimate....is meeting another who suffers, face to face. There's nothing like it.
Sometimes there's small get togethers (meet & greets) in different regions. If you live in an area where there are several other sufferers....or just 1 sufferer, get together for lunch or coffee. There's an area here on the site where you can post and see if someone is in your area and wishes to meet up. I promise you'll not regret it.
Lots of pf vibes to you....let us know how things are going. There's always someone here....24/7.
Jean
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CHvsTN
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Re: How do YOU cope?
« Reply #16 on: Jul 7th, 2006, 6:40am » |
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Hello there,
I'm new to this forum (but a long term sufferer), but this might help some of you...
I manage to cope with daytime attacks by intercepting them with self-hypnosis. You've got to be quick, because when it reaches Kip 7 or 8 it's too late to be able to concentrate to achieve a "suggestible state" where you can fool your brain into thinking the pain isn't there.
Being woken up with full blown CH is a different matter - ouch! 
Best wishes to you all.
...and by opposing, end them.
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... and by opposing, end them.
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kcopelin
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good grief
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Re: How do YOU cope?
« Reply #17 on: Jul 7th, 2006, 9:58am » |
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Let's see, ditto to all above-I've been chronic since March of 2005 so that's what 16 months? Episodic since 1991. This cycle I finally found relief from nightime hits with melatonin and benadryl-can now get rest which strengthens me to fight another day. Chers are a tough bunch-you are enduring, and surviving, the worst pain known to man. And as long as you continue to draw breath you are winning. Energy drinks-the strong ones like Rock Star Red Bull, Monster, slammed at the first sign, never relax (forget napping my friend) do not fear the next hit but do be ready with your arsenal. Stock up on your abortives between cycle if you are episodic-that way you don't have to wait for a DR appoint when the CHs return.
And the biggest way I cope is having a family that loves me, my CH family who understands me, and trusting God who know why this is happening to me.
(I do Tai Chi-it actually helps some-definitely not during a hit  but it gives a sense of enpowerment. Found yoga (particularly the neck parts) triggered so I don't do yoga.
Praying for some PF time for you and that you find your perfect combination of external and internal defenses.
Kathy
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Summerbabe
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Re: How do YOU cope?
« Reply #18 on: Jul 7th, 2006, 12:00pm » |
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Hey Frizzle its Summer, I am dealing with a cycle now and at the worst of kip now and hoping that means the demon is having is way so he will leave , it is so hard to deal knowing you are gonna get hit, the shadows they suck and yes they scare me too. You gotta ride the wind , oxygen , Immitrex inj, help also I am on verapamil 3x day . I am getting hit 2-3 times a night now, just hang in there and like another posted, there are people alot worse then we so indeed count your blessings, and us here will help you through this monster . PF WISHES  Summer
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frizzle
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Re: How do YOU cope?
« Reply #19 on: Jul 7th, 2006, 12:12pm » |
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Thanks all.
It's been a horrible week getting hit all night long, every time I fall asleep even for a little. Plus getting hits during the day. Not easy to deal with when you have 2 kids under 3 and a husband who is away for the entire week.
Add in the mix I'm nursing a 1 month old, I just had surgery and I'm so low in iron that I could pass out if I stand up too quickly (and those iron pills are HUGE!) I'm trying to go this cycle as med-free as possible and the whole oxygen thing is new this time around.
I'm just whining to you all til my husband gets home LOL
It is such a good thing that this site is here. Definately.
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ShaneM
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Re: How do YOU cope?
« Reply #20 on: Jul 7th, 2006, 6:58pm » |
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For me, I have to agree with spidey. I know that it will come to an end. I am able to use abortive meds for now. And it has been a blessing. I also have to agree strongly with Doug that you MUST find the right Doc, without them you ARE ON YOUR OWN!! I have been through 7 in the last 15 years. Two I liked and only left the first because he retired. I also suggest that you find a Pharmisyst (sp) that you can trust and that will work with you and is willing to explore treatment of YOUR condition. You are one of but a few on the map. Good luck Frizzle...
Shane
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mynm156
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Re: How do YOU cope?
« Reply #21 on: Jul 7th, 2006, 10:26pm » |
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Hey Frizzle welcome aboard!
Somedays are better than others I just cant let it keep me down. I went chronic two years ago and if I didnt have a Great Wife and understanding family I dont know how I could have made it. I think that without this site and knowing that usually there is someone here 24/7 has been a god send more than once!
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| « Last Edit: Jul 7th, 2006, 10:26pm by mynm156 » |
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Mattrf
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Re: How do YOU cope?
« Reply #22 on: Jul 8th, 2006, 11:51am » |
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on Jul 7th, 2006, 10:26pm, mynm156 wrote:Hey Frizzle welcome aboard!
Somedays are better than others I just cant let it keep me down. I went chronic two years ago and if I didnt have a Great Wife and understanding family I dont know how I could have made it. I think that without this site and knowing that usually there is someone here 24/7 has been a god send more than once!
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Well said I feel the same way, my wife and kids are my saviors.
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There is no stronger a person then one who can deal with brain pain and still function.
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Sandy_C
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Re: How do YOU cope?
« Reply #23 on: Jul 8th, 2006, 3:20pm » |
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Hi Frizzle. Welcome.
I believe in the Boy Scout motto: Be Prepared (and I'm female)
Be prepared with your tools, your armor. If you are on meds, when out of cycle, make sure to try to stockpile the meds so they are ready to go when needed. Keep non med helps in the house at all times (6 pack of Red Bull in the fridge which NOBODY is allowed to touch - ever). Ice packs in the freezer (or bags of frozen peas which you do not cook). These are also your meds. Stockpile them.
Be prepared physically. During your pain free time out of cycle, exercise, eat healthily, and get rest because your body will need it and appreciate it when the cycle starts, and hopefully it won't wear you down quite so fast.
Be prepared by keeping a detailed log. While in cycle, log in literally everything you do physically, everything you eat or drink, the weather, time of day of hits, length of hits, how many hits per day. Then, READ your log. You will most likely see some patterns in it where something you have been doing or eating has triggered a hit. If you find a pattern - avoid it like the plague.
And the most important preparation is be prepared mentally by knowing you are going to go in to another cycle, and you are going to get hit badly. The hit will end, and so will the cycle (unless you are chronic). KNOW this, memorize this, etch it in to your brain. That way, you won't be taken by surprise when the hits come - and they WILL come. It's your mental prepardness and attitude that will be the ultimate thing that gets you through the hits, and finally the cycle.
Try to stay calm. Try to go about your daily business without worrying about the next hit or the next cycle It is what it is. Do not be afraid, it will end. Unless you can get hold of your fear of the next hit, next cycle, you will always live in fear, and that's no way to live.
Sandy
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And I'll be your friend
I'll help you carry on
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HappyElaine
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Re: How do YOU cope?
« Reply #24 on: Jul 9th, 2006, 5:12pm » |
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I cope by being as calm as I can. I use to just panic bad when I would get hit. I try to stay as calm as I can, I cry and rock but calmly, I use to hit my head with my hands and all kinds of things. Now when I get hit I know because of the people here who helped me, that the pain will leave. I rock, use my o2 and I in no time I am better. I also stopped taking drugs. I just tough it out.
Jean and Vig are so right. I think of people who are so much worst off and I pray a lot. If it gets so bad I can't take it I come here and usually the people here help pick me up.
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Fear less, hope more;
Whine less, breathe more;
Talk less, say more;
Hate less, love more;
And all good things are yours.
Member of ch.com and OUCH since 1999
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