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Title: Migraines are Worse than Clusters... Post by Langa on Dec 7th, 2004, 1:05pm I was in the ladies room today washing my hands when a co-worker walked in and asked me how I was doing with regard to my headaches. I answered that I was much better now that they went into remission (over that cycle now about a month). She accidentally caught me sucking on the oxygen once during my 4 month cluster bout in a back supply room where my boss told me to keep it should I need it. Afterwards she asked me why I needed the oxygen and I explained. Her response? "Yeah, I know. I get severe migraines. Nothing like those. Hope you get rid of your headaches soon". She gave me a smirk and never spoke to me again. Today, she said the same thing..."As I said before, I can relate, though i'm sure your pain is not as bad as the migraines I get". For the first time in my life I decided to really educate someone on the horrors of cluster headaches. I walked over to her, looked her straight in the eye and said "Really? You're mistaken. There is something more horrible than migraines, not to downplay your pain because I have loved ones that get migraines, but let's see, you can lay down and close your eyes in the dark and fall asleep. Me? I crawl on the floor, vomit on myself and bang my head on the wall until i get nosebleeds trying to get the imaginary icepick out of my brain, oh and let's not forget the runny nose you can't blow because you feel like your brains will come out of your ears, the sweats and the level of lunacy you reach where only suicide seems to be the only way out, but it gets better...because of the trauma my brain just went through, I'm left feeling like I need to sleep for two days, but I can't, you see I have to keep pressing in and trying to have an almost normal life, almost I say because I live in constant fear, dread and anxiety of when the next one will hit me. Do you know what it's like to live in fear? Think about it. It's like you're trying to hide from an unseen monster who will pounce on you when you least expect it. How about dreading sleep because that's when it really comes to get you and by that time it wakes you, it's been there so long you have no chance of a good fight. So you sit back and wait for it to be done with you. Knowing that it will come back when it damn well feels like it. But imagine living like this with no breaks. Mine will go away, but others live like this for months/years on end. Still, none of that even compares to the loneliness we feel because most of the world isn't informed of this horror. I won't downplay your pain if you don't downplay mine. Deal? Have a nice day"! Sorry for the long thread. To all fellow sufferers, I wish you PF Days, Nights and Years... Langa |
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Title: Re: Migraines are Worse than Clusters... Post by thomas on Dec 7th, 2004, 1:18pm Bravo! ;;D |
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Title: Re: Migraines are Worse than Clusters... Post by cootie on Dec 7th, 2004, 1:27pm Atta girl !!!! I'm a supporter here but am totally annoyingly notorious for CH SPEECHES to anyone I run into at home that crosses my path with pain reference to them. I've seen it too long......and I know it all too well. Watchin ch from a backseat window Pam |
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Title: Re: Migraines are Worse than Clusters... Post by purpleydog on Dec 7th, 2004, 1:27pm on 12/07/04 at 13:05:05, Langa wrote:
No shit. I have given up trying to make people understand. It's just not worth the hassle. Excellent description. Would make a good thing to keep in your wallet for the inconsiderate idiots though. |
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Title: Re: Migraines are Worse than Clusters... Post by cootie on Dec 7th, 2004, 1:32pm I've actually caused myself a temporary hot flash over it all when someone looks us in the eye and says.....well why don't you keep a bottle of advil in your pocket and take them rite away or maybe check into food allergies.....and is probly weather related. I like it when they say.....why don't you have anything that works to avoid them and go to a different doctor. Simple simon ordeal it is NOT. I do agree it is alot of times FUTILE to wear yourself out and work yourself up explaining it. But I won't let it go at bein that simple even if I have to shout. A ch soldier that has been there seen it but fortunetly don't have it Pam |
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Title: Re: Migraines are Worse than Clusters... Post by thomas on Dec 7th, 2004, 1:35pm Yeah it always amazes me how the dumb ass serving my burger and fries at the local Mickey D's or the wench serving me my frosty barely pop after a hard day of work, think they know as much as my friggin' neuro. >:( |
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Title: Re: Migraines are Worse than Clusters... Post by Langa on Dec 7th, 2004, 1:39pm I agree Purpley...sometimes it seems futile...still, as Cootie said, we are CH Soldiers...we're the only voice for it when it comes right down to it really. I really don't know if that woman will ever speak to me again or even remember what I said. Still, our voice has to be heard...and maybe somewhere down the road, what we say to others as a ways of informing them of clusters, can actually help another clusterhead who's in the dark and thinks, like I did for so many years, that I was the only one on earth with this pain. It sucks no matter what, but I think after 26 years, I'll join with Cootie and shout to the top of my lungs... ;) |
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Title: Re: Migraines are Worse than Clusters... Post by kimh on Dec 7th, 2004, 1:47pm It is a shame and a sham that we all feel the burden of the "explanation"........ Not our fault and to a large degree not the fault of most people with no understanding. They simply do not know and have never "HAD" to know.....If you were bleeding in the street, for sure you'd receive instant empathy and the appropriate responses from public in general along with prompt medical attention. The truth is that cluster sufferers are STILL not privvy....That is the continuing travesty..... :'( |
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Title: Re: Migraines are Worse than Clusters... Post by thomas on Dec 7th, 2004, 1:50pm I consider the source most times, yes people that tell me how to "cure" my headaches or they have cousin or whoever that gets "really bad" headaches....... I consider them to be blithering idiots and unable to hold a discussion with some one of my advanced intelligence and dismiss them as having any worth as a human being whatsoever. |
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Title: Re: Migraines are Worse than Clusters... Post by Jeepgun on Dec 7th, 2004, 1:50pm *standing ovation* BRAVO!! |
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Title: Re: Migraines are Worse than Clusters... Post by TomM on Dec 7th, 2004, 1:57pm Excellent descpription.[smiley=thumbsup.gif] [smiley=thumbsup.gif] |
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Title: Re: Migraines are Worse than Clusters... Post by echo on Dec 7th, 2004, 2:02pm Time will tell if she's stupid enough to open that can up again. Excellent description. |
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Title: Re: Migraines are Worse than Clusters... Post by Leesa on Dec 7th, 2004, 2:25pm VERY well said!!! It dont get any better then this!!! Gotta love it!!! One more person out there that got "bitey end" of a CHer and got some learnin!! Leesa ;;D |
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Title: Re: Migraines are Worse than Clusters... Post by marlin on Dec 7th, 2004, 2:28pm Nice description. I always get a little ticked when I get that slack-jawed dopey look in response to my admittedly short lament about CHs. Invariably I also get an unsolicited presciption for Exedrin Migraine, "I really works for me, You should try it". That's when I let loose with "There's NO FUKCEN PAIN MEDICATION INCLUDING MORPHINE THAT CAN STOP A CH IN ITS TRACKS!!! IF MY ARM WAS CHOPPED OFF WITH A DULL CHAIN SAW I WOULDN'T NOTICE BECAUSE A CH IS ALL THE PAIN MY BRAIN CAN HANDLE AT ONE TIME - GET IT??????" geeze, I really like the idea of calling a CH by a more uncurable and debilitating sounding purely medical latin name. But hey, it's still a HA. At the very bottom, usually in mid cycle when I'm doing the "WHY ME" dance, I try and think of a 10 year old kid with terminal cancer or a quadriplegic. That's usually when my cycle winds down... |
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Title: Re: Migraines are Worse than Clusters... Post by kimh on Dec 7th, 2004, 2:34pm Hey Marlin, We are the "monkey in the middle", ehh? We are faced with choices and most of the time frustration and futility win. But reality is that what we go through really is an insult piled on top of an injury that cannot kill us, but nevertheless DEBILITATES us and keeps us outside the gates of what makes all the difference = empathy and recognition..... How will that goal be achieved for kids in the future???? I read and relate to this all the time. IT needs to change because kids are getting clusters and being misdiagnosed as we speak. |
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Title: Re: Migraines are Worse than Clusters... Post by Ruth on Dec 7th, 2004, 3:22pm Langa, That was wonderful, what you said. I am very proud of you for standing up to that idiot. Also glad to hear you are out of cycle. Me too now for about a month. Take care, happy holidays. Ruth |
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Title: Re: Migraines are Worse than Clusters... Post by karma on Dec 7th, 2004, 3:22pm Great description I hope it made you feel better because thats all it probably did. You can't blame a person that has been raised to believe that there is a magic pill for everything to not understand. Just remember that the worse pain a person has experienced is all they can relate to hence the 10 on the kip scale. There is nothing higher than a 10 but my 10 may be your 8 or you may experience a new level of 10 on any given day. In the long run its just not worth getting bothered if someone that doesn't matter in your life understands or not. Be happy for them that they don't understand. |
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Title: Re: Migraines are Worse than Clusters... Post by Jeepgun on Dec 7th, 2004, 3:25pm It's a lot easier to just kill and eat them. 8) ;;D |
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Title: Re: Migraines are Worse than Clusters... Post by marlin on Dec 7th, 2004, 3:32pm on 12/07/04 at 14:34:54, kimh wrote:
It's not likely that empathy from strangers will cure your CHs. You'll still get the pain. Focus on what might make a difference in your life and screw anyone that doesn't want to understand. I focus on my boss understanding and of course my family knows what I go through. I rarely complain about pain other than CHs (and I've got a few others) so those that know me accept that CHs are pure hell. I sure do feel for those that lose their jobs over CHs though. There should be some way to prevent that from happening... |
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Title: Re: Migraines are Worse than Clusters... Post by Langa on Dec 7th, 2004, 3:33pm on 12/07/04 at 15:25:50, Jeepgun wrote:
;;D |
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Title: Re: Migraines are Worse than Clusters... Post by cootie on Dec 7th, 2004, 3:38pm As in nature we 'LEARN' from our mistakes......that other girl is probly goin to be afraid to talk to you again.....you either scared her into THINKING or lunatic came to her mind first. I have found out that useing the comparasin to 'amuptation without anisthtetic' gets a GREAT bit of attention....a real show stopper and most the time the people shut the hell up and get quiet. I 'can feel' that they no longer have anything to say as far as advice. I have just TOPPED them off. But yeah like Kim said people that have never went thru it or had to live with it do NOT have a real clue. It's the same with alot of pain accurances.....amazes me how some people who have never had to visit the House of Pain for anything cept a tooth pulled or stoved toe. Maybe a cramp or sinus headache here and there. Even with back issues I get the same CRAP......yeah my back hurts to so I just take it easy a day or take some advils.....tylonal is wonderful and even the hospitals use it. (liver killers) Try a massage.....touch me and yer dead meat Pam |
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Title: Re: Migraines are Worse than Clusters... Post by Jonny on Dec 7th, 2004, 4:12pm Outstanding post, Langa! Take your pick of the male servants and all the grog you can carry ;;D ...................................King jonny ;) |
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Title: Re: Migraines are Worse than Clusters... Post by Tiannia on Dec 7th, 2004, 4:15pm That was great langa... Friday, I was getting shadows bad and felt he sweats coming so I knew I was in for a big one. So I decided to stop at Mc Donalds to get the kids fed so I could suffer wthout feeling like a bad mom for not cooking dinner and the order guys says. "Well you are just a ray of sunshine tonight. Arnt you?" Not trying to be an ass I said sorry I am getting a HA. So he finished my order and as I drive up to get my food he says/ "Go home and take some advil or something. " Concidering I was at about a K6 and ramping at that moment, I figure I did good to have on the news "McDonalds Window worker murdered by having the 2 happy meal toys shoved up his ass and down his throat." |
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Title: Re: Migraines are Worse than Clusters... Post by Jeepgun on Dec 7th, 2004, 4:17pm God.... What a fuckin' azzhole... I would have replied, "Fuck you. Fuck you very much." |
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Title: Re: Migraines are Worse than Clusters... Post by kimh on Dec 7th, 2004, 4:17pm No . ... Empathy will surely NOT provide what we are all looking for but surely on a larger scale would help???? Recognition of an injury for exactly what it IZ helps folks to treat it faster and with a motivation for effectiveness??? IF no one knows what the hell is huring you how can they relate at awl? Understanding is step 1. Treating is step 2. We still have not arrived at 1's door. |
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Title: Re: Migraines are Worse than Clusters... Post by dantheman on Dec 7th, 2004, 4:21pm YOU Go Girl!!! and thanks from all of us !!!! |
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Title: Re: Migraines are Worse than Clusters... Post by kimh on Dec 7th, 2004, 4:32pm I disagree. The argument is not as to what hurts more, only what to do about something that hurts in a completely new spectrum. ....one ASIDE from what we all know and accept about head pain .............we ain't there. And screaming and eating the enemy will not accomplish ONE FREAKING THING - mayhab a phot opp for next convention = ZIP for us and wew hew for fun ::) |
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Title: Re: Migraines are Worse than Clusters... Post by alleyoop on Dec 7th, 2004, 5:59pm on 12/07/04 at 16:32:12, kimh wrote:
[smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] AWESOME POST LANGA!!! HELLOFA RESPONSE!!! [smiley=bow.gif] (I'd hate to see what happens to the poor slob that tells you to take an Advil while you're in the middle of a hit!) [smiley=bash.gif] We all know how key education is in dealing with this disease. She got one! [smiley=JAW_DROP.gif] Whether or not it had any far-reaching effect, is irrelevant! I'll wager you won't have to listen to her moronic babblings anymore. [smiley=laugh.gif] Way to go girl! You make me proud. ............................alley ;) |
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Title: Re: Migraines are Worse than Clusters... Post by Sean_C on Dec 7th, 2004, 6:11pm My nipples are hard ;;D Way to go ;;D Sean............................. |
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Title: Re: Migraines are Worse than Clusters... Post by Gator on Dec 7th, 2004, 7:11pm Great job, Langa. Good to see one more of the masses get an education and walk away without permanent bodily injury. Pain is pain. It all hurts and no one knows the depth of someone elses. Sometimes it's hard to explain yours without minimizing someone elses so I usually just let it lay. Hopefully she learned a small lesson. Gator |
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Title: Re: Migraines are Worse than Clusters... Post by Langa on Dec 7th, 2004, 7:12pm on 12/07/04 at 16:12:03, Jonny wrote:
Pick of male servants? hmmm...what's a girl to do??? ::) |
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Title: Re: Migraines are Worse than Clusters... Post by Redneck on Dec 7th, 2004, 8:26pm on 12/07/04 at 15:25:50, Jeepgun wrote:
Do they taste like chcken too? Seriously, Fantastic post and answer. Hope you don't mind if I steal it and show it to some of the people I work with. Hope she has sense enuff to stay outta your way now. ;;D |
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Title: Re: Migraines are Worse than Clusters... Post by kimh on Dec 7th, 2004, 8:40pm Women always know where to "take their pik" LOL - it's instict you MOLLOX. What is M-O-L-L-O-X???????????????? [smiley=huh.gif] = ((OMG no idea and i ain't even drunk ;;D)) WOOPS - it must be CATHY in NEW ZEALAND - she is a bad influence on my language ya nowe :D Cathy and Claire : Happy Christmas you sun kissed butts ya ;;D Oh yeah: PSS: Wes gimme a lite willya? :Dblah hah! No. Really. ;;D |
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Title: Re: Migraines are Worse than Clusters... Post by kimh on Dec 7th, 2004, 8:52pm ..........just in case M - O - L - L- O - X = something unforgivably disgusting? Cathy made me do it and her husband Wes REFUSED to lite my cigarrette - he feared i would escape out the window after taking an extra lawng bath, pee in his garden ...........+ (shhhh. i stole all his lighters) :D I cannot believe they are on the beach....did you know she sent me her fuzzy slippers? while i'm freezing???? :D God put a SPELL on yur butts 8) |
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Title: Re: Migraines are Worse than Clusters... Post by kimh on Dec 7th, 2004, 9:00pm ::) PSSS: ...........i really hate it when that happens.............. 8) |
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Title: Re: Migraines are Worse than Clusters... Post by allan_r on Dec 7th, 2004, 9:43pm Langa- Must've been unbelievably uplifting to walk away from that one. Good for you. I only tell people that its a Cluster Headache and my neurologist told me that when he started practicing 30 years ago the condition was referred to as "Suicide Headaches" before being named "Cluster Headaches." That seems to convey enough information for my purposes. allan r. |
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Title: Re: Migraines are Worse than Clusters... Post by PittsburghJoe on Dec 8th, 2004, 2:57am Way to go Langa! And Tia, my love, thank you for not creating a Springer episode in the drive-thru. ::) Joe |
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Title: Re: Migraines are Worse than Clusters... Post by Charlie on Dec 8th, 2004, 4:20am Beautifully done. Just great. Damn I was lucky. The first person I ask about this horror was my best friend who was a registered nurse who worked at Utica State Hospital. He knew about them and said that now and then a CHer would be among those seeking help or now and then sent by incompetent MDs. Makes me wonder how many needed a neurologist rather than a psychiatrist at the time. Thanks for posting this. Charlie |
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Title: Re: Migraines are Worse than Clusters... Post by Jeepgun on Dec 8th, 2004, 3:05pm Ditto, Jim. I just send people a link and tell them to page down to the red text that reads, "Want To Know What It's Like To Live With Cluster Headaches?" After reading those accounts, most people come away with a pretty solid understanding of what kind of pain levels we experience. |
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Title: Re: Migraines are Worse than Clusters... Post by IndianaJohn on Dec 8th, 2004, 3:43pm Excellent posts and description. Well done! I'm kind of partial to the pulling the porcupine out through the eye socket description. But hey, that's just me. |
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Title: Re: Migraines are Worse than Clusters... Post by Jeepgun on Dec 8th, 2004, 3:47pm I still think you could have punctuated your statement by beating her senseless with the paper towel dispenser... ;) |
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Title: Re: Migraines are Worse than Clusters... Post by Langa on Dec 8th, 2004, 4:13pm on 12/08/04 at 15:47:34, Jeepgun wrote:
Didn't think of that one, shucks! ;) I'm actually still trying to get over how I got all that out in one breath! I suppose I can deal with people being uninformed, not interested, not give a crap, etc. That i've dealt with for 26 years. My family, my friends and my boss, who is a great man, know and understand. However, I couldn't deal with this woman, at this particular time, so blatantly look me in the face and act like she has any clue about what it's like to go through something like this. I may not know what it's like to have cancer, but I won't look at a cancer patient in the face and dismiss their pain, just because I don't have a clue. I'd rather keep my mouth shut. I don't expect to educate the masses on clusters, but I will EDUMACATE someone as the need arises in whatever form I may see fit at the time ;;D ...Mostly, they'll be forwarded here as suggested by so many. Others, well that remains to be seen. I tackle one by one. Frankly, I was surprised that I reacted the way I did with this woman. It felt damn good though! ;;D I have to say it's an awesome feeling being here and having a place "to hang your hat" with a family that TRULY understands. Thanks for all the encouraging replies! Langa :) |
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Title: Re: Migraines are Worse than Clusters... Post by Jonny on Dec 8th, 2004, 4:31pm on 12/08/04 at 16:13:57, Langa wrote:
Thats why after 23 years of searching for this family I have been here everyday for the last five years ;;D Welcome aboard! ..................................jonny |
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Title: Re: Migraines are Worse than Clusters... Post by alleyoop on Dec 8th, 2004, 7:49pm on 12/08/04 at 16:31:15, Jonny wrote:
Well I'll just be damned! Either you've found a soft place in Jonny's heart or Jonny's just plain getting soft. Langa, you wouldn't have any way of knowing this........ but Jonny's normal way of welcoming a newbie to this family is.................STFU!!! [smiley=laugh.gif] .......................alley ;;D |
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Title: Re: Migraines are Worse than Clusters... Post by cschick on Dec 8th, 2004, 8:11pm Quote:
HOLY HELL! |
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Title: Re: Migraines are Worse than Clusters... Post by Tim_Z on Dec 8th, 2004, 11:29pm Great post Langa. You hit the nail on the head, the paranoia, fear and lonliness are really as bad as the pain. Most people are clueless, I rarely explain my condition anymore. Tim |
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Title: Re: Migraines are Worse than Clusters... Post by Jeepgun on Dec 9th, 2004, 9:08am Am I the only one who thinks that being able to projectile vomit at will, when confronted with such clueless folks, would be a really cool ability to have? >:( |
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Title: Re: Migraines are Worse than Clusters... Post by marlin on Dec 9th, 2004, 10:28am What's really funny is when you tell them you give yourself an injection to kill the CH. Then you really get the slack-jawed look back and..."Doesn't that hurt worse than the HA?". It's a waste of time trying to explain unless there's a real purpose - your boss for example. To them a HA is something LESS than a nuisance... |
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