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cathy
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OUCH BOARD.....
« on: Oct 24th, 2003, 3:07pm » |
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Okay im probably sticking my neck on the line here, but whats new....I would really like to get involved in OUCH more and have tried to understand how it works on the OUCH board as well as follow some of the posts or topics, but to be completely honest I just don't get it.....it would be really useful for me and maybe others if OUCH were explained for us thicko's of which im one, maybe the only one, sometimes i'll read the posts and I just don't understand whats going on, so how can I help.. ???
I WANT TO MAKE A DIFFERENCE....just tell me how!
Cathy
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forgetfulnot
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Quote:| OUCH were explained for us thicko's |
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Hi Cathy could't agree more but if you start to understand I for one will worry about you. 
Lee 
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BarbaraD
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Re: OUCH BOARD.....
« Reply #2 on: Oct 24th, 2003, 4:04pm » |
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Good question and one that needs to be addressed. OUCH was originally set up for members to be involved. In the first stages everything was done on ch.com and everyone knew everything that was going on (of course we weren't doing a lot except talking back then.).
But, as with most volunteer organizations, everyone was excited about doing something, but waited for someone else to do it, and then when someone else did it - someone would complain and well... you get the picture. So committees fell apart and things didn't get done except by a few people who just went ahead and did it. THEY took control. A lot of members felt - well, I'm not one of THEM so I just don't count and quit trying to do anything and those few HAD to keep doing everything to keep OUCH running. As new members came in very few bothered to volunteer because THEY were handling things. Not because THEY particularly wanted to, but because, to keep OUCH running THEY had to.
In the last few months members are getting excited again and this is a good sign. Our President is trying to get members BACK involved. Right now he's reaching out to the membership asking WHAT CAN YOU DO TO HELP OUCH. Can you WRITE, Can you do RESEARCH, What are you TALENTS?
OUCH needs people to do research for Grants. There are Grants available to us, but no one to research them. Can you write an article for the newsletter? We haven't put out one in a year. Do you have a fundraising idea? Let our President know what it is. This is how to get involved and help OUCH. Every member is IMPORTANT and every member can help.
Sometimes we lose sight of the goals of OUCH - we need to go to the Bylaws page on the OUCH website and read these goals periodically and remember what we're trying to accomplish. With this end in mind, how could you NOT volunteer to do something?
Cathy, I'm sure Don would welcome your help. Let him know what you can do to help OUCH. He's a nice man and listens to all the members. Tell him what you think would HELP OUCH achieve its goals and where you want to work. He'll put you to work.
Right now what OUCH needs is a mix of Oldtimers for stability and history and newbies for ideas and dreams. This is known as TEAMWORK. And with that we can achieve the goals of OUCH.
BD
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cathy
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Re: OUCH BOARD.....
« Reply #3 on: Oct 24th, 2003, 4:14pm » |
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 Thanks Barbara....
Lee start worrying.... 
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Margi
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Re: OUCH BOARD.....
« Reply #4 on: Oct 24th, 2003, 4:18pm » |
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on Oct 24th, 2003, 4:04pm, BarbaraD wrote:| .... A lot of members felt - well, I'm not one of THEM so I just don't count and quit trying to do anything and those few HAD to keep doing everything to keep OUCH running.... |
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Hi Barb,
nice post. I don't understand the above sentence though....a lot of members felt.......? felt what? or do you mean "left"....? I'm just not sure I understand what you're trying to say here? You go on to say "i'm not one of them so I just don't count and quit trying to do anything..."
I'm just not getting your point here, Mom. Please explain.
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kathy copelin, ch.com 8/8/06
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cathy
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Re: OUCH BOARD.....
« Reply #5 on: Oct 24th, 2003, 4:22pm » |
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I think she was trying to say that a lot of members felt that they didn't belong there they felt like they weren't really wanted there....thats how I read it anyhow....but I have been wrong before, it has been known occasionally but not often.... but probably this time....who knows.... 
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Margi
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Re: OUCH BOARD.....
« Reply #6 on: Oct 24th, 2003, 4:32pm » |
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OK, thanks Cathy - actually that does make sense to me now.
Barb, in the time you've been gone over the last couple of years I've seen the trend you are talking about - that honestly was in effect when you left - change a little bit. More and more, we are seeing new folks step up to the plate to help and offer their expertise. Catlind is a perfect example of this. She's not exactly a newby anymore, but she has just opened up her heart and her time to OUCH like few before her.
Yes, there are still mentions of the 'clique' mentality but no where near as often as in the early days. I think actually a lot of the originals here are more taking the role of "guide" and finding more patience with subjects that may be brought up for the 50th zillionth time, but subjects that the newcomers have never thought of before. All in all, I think we've become MUCH more professional here than we were in the early days.
Sorry - off on a tangent there - I just wasn't clear in what you were saying.
Thanks, Cathy. 
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| « Last Edit: Oct 24th, 2003, 4:34pm by Margi » |
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kathy copelin, ch.com 8/8/06
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Elaine
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Cathy,
This is all anyone really needs to know below thats is what OUCH is all about. New and Old in OUCH work toward this.
Mission Statement
The Organization for Understanding Cluster Headaches (O.U.C.H.) provides information and emotional support to cluster headache sufferers throughout the world.
We encourage, support and participate in research to develop new and improved therapies and practices for treating cluster headaches.
Vision Statement
O.U.C.H. will be the most comprehensive resource in the World for cluster headache sufferers.
We will eliminate misinformation among cluster headache sufferers, families of sufferers, coworkers of sufferers and the medical community by providing the most up to date information on treatments.
We will strive to be a catalyst for finding a cure for cluster headaches by encouraging and participating in research into the condition.
Members should never feel left out, MEMBERS are really what makes OUCH! When I posted about Bob P leaving. I posted wrong. OUCH is not Bob P but its people like him that kept a lot of us going when we were tired and wore out. It was just such a upset for me because he and I have always been able to work together. He is the kind of guy you duke it out with in the morning and have coffee with him in the afternoon. Not sure if that makes any sence. No member should feel left out. Members should speak UP WITH IDEAS and whatthey want to know Just like you are doing. Our leaders don't know unless you tell them. You can email and you can even call them. I bug the crap out of them all the time  ! Every Member that joins OUCH does something just by joining. Every member that donates a $1 helps. You don't have to do a lot to count. If you want to help and have something you are good at tells them they will put ya to work. If you want to voice your opinions do so. MEMBERS Count big time. Never feel like you don't count!
It does not matter if your OLD OR NEW! What matters is what everyone works toward ! We have to work as a whole a team !
If you read the OUCH boards you will see some great things that will happen. It will benifit every clusterhead here member or not.
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Mark C
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Re: OUCH BOARD.....
« Reply #8 on: Oct 24th, 2003, 5:10pm » |
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Ready or not...here I come!
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BarbaraD
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Re: OUCH BOARD.....
« Reply #9 on: Oct 24th, 2003, 5:12pm » |
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Yeah, Margie, you and I just kinda got laid back, you with the supporters and me with the online store. Just kinda lettin' the "kids" do their thing.
But you know something I thought of the other day. We need to do a HISTORY of OUCH. There are some people on this board that don't even know who KIP is. They use his scale every day,but don't have a clue who he is. I told someone he was my buddy from Jupiter and they thought it was the planet not a town in Florida. Welll, with Kip...
Maybe Don ought to appoint a(n?) historian to go back through the archives and do a historical search and put together a history of OUCH from its humble beginnings through today and keep it up through the future. Who knows years from now when a cure is found - this might be worth looking back on.
When I think back to those early days, I don't know if we could be called "cliques" or just close. There weren't that many of us and I think we just got really close to one another. I love all the clusterheads I've met through the years, but there's a special place in my heart for all you "old guys". Heck, just thinking of Barley in the middle of bed on fire still gets me in a better mood.
Can you tell, I'm just coming down from a HA? I get this way afterwards. So much for the mush... Now go volunteer for something Cathy.....
Hugs BD
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Ree
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Re: OUCH BOARD.....
« Reply #10 on: Oct 24th, 2003, 6:39pm » |
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What scares me and I have said this before is setting sights on the future and appointing someone only to have them disappear for a while. What happens when this happens. This has happened before so though I think that we need people that will compete and be passionate about OUCH... but are willing to dedicate the year and stick around for the full year.
and I am unclear as to whether Supporters can run for certain offices or all... I was told that it would be better for Sufferers to run for office, but it has been pointed out to me that Margi had been a Secretary of sorts in the past... so someone make this clear to me.
please.
and Barb though that Historian thing sounds really good. We need someone to write the News Letter to make us feel better about this organization that we are really becoming dedicated to. Everyone wants to see it flourish but I wouldn't try to sell a grant to someone and have them come in to see that the last News letter was Sept of 2002... Though it highlighted my family and I was flattered to death, its been over a year since... What is going on at OUCH and what are we going to do with the money we get? Who will run the website now that Bob P. is leaving. Those are areas that need to be addressed long before any History of OUCH is written.
Ok you can say I am being critical. If I had the time I would dedicate some. Right now I am supporting full time here... Haven't left for going on 4 years. I am going to be active in helping with the election this year. I am a mediocre graphic artist and a hair stylist. I can push out a mean poem every now and then... and I hate paper work. If you have a job for me that meets the criteria, let me know........love ree
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| « Last Edit: Oct 24th, 2003, 6:41pm by Ree » |
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Prense
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Re: OUCH BOARD.....
« Reply #11 on: Oct 24th, 2003, 6:49pm » |
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This all makes sense to me, but I still cannot grasp the layout of the OUCH board. It is totally greek to me. 
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BarbaraD
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Re: OUCH BOARD.....
« Reply #12 on: Oct 24th, 2003, 6:57pm » |
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I think there's a newsletter in progress. Write a poem for it. Don can give you details (editor and such). I run the online store from my office (in my 'spare' time). Margie runs the support group in her "spare time" and has since she started it. Elaine pops up with fundraiser when the need arises. And on and on.
A lot of people have gotten cynical because everyone is not being sprinkled with "happiness dust" daily, but it takes a lot of people to run an organization. A lot of people are never seen or heard from, but they are there just the same. One lady answers EVERY NEW POST on the visitors board. Now that's a JOB. She never gets a thank you and never expects it. She does it for OUCH. Only occasionally does she even post on ch.com.
About people sticking around for a year after they are elected. Well, no one can do anything about that and I don't think anyone has an answer to that one. I can't imagine anyone going anywhere, but that's me. I've been passionate about OUCH since it was thought about and will be until a cure for CH is found. But everyone is different and we can't control that. We just carry on without them - we always have and OUCH has survived and will so in the future because of the ones who do have staying power.
And yes, supporters can run for office and make very good officers. They can't cop out because of a headache.
But there's enough work in OUCH for every member to do something. Just find what you can do and volunteer to do it. An idea was what started OUCH and that's what will lead us to a cure.
BD
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oringkid
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Sometimes people who disappear have no choice. Not all sufferers are lucky enough to be able to weather extreme financial changes.
Yes, I am one who, with all good intent, accepted the job of editing and putting out the Newsletter. Unfortunately, just when it was due to go into production, I lost my internet, my phone and my house due to unexpected and prolonged lay offs.
I would volunteer again to do the Newsletter now that things are looking up for us, (in fact that was my intention) but now feel that life is too uncertain. Commitment is not enough. You also have to have reliable resources (i.e. money) to back up your commitment.
However, I would like to help, in a limited manner, whoever is working on the Newsletter now. I don't anticipate problems for at least the next 6 months...
Sorry for dropping the ball, but as I said, some things are unavoidable.
Sherry
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BarbaraD
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Re: OUCH BOARD.....
« Reply #14 on: Oct 25th, 2003, 4:31am » |
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Ok, Sherry, you just came up with a great way to volunteer. Write an article for the Newsletter on what you just said.
Over the years I've read that on this board so many times, I've lost count. My goodness, I've written it! "I WANT to do this, BUT life's too uncertain" - It would make a great article. That's how you can HELP! Put it in writing.
That's how we get a newsletter out - everyone does something to help get it out....
Hugs BD
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oringkid
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Well Barb, that sounds kinda.... ridiculous.
And... somewhat rude. Perhaps I am taking it wrong.
But, somehow, I don't think so.
Sherry
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Marc
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Re: OUCH BOARD.....
« Reply #16 on: Oct 25th, 2003, 9:24pm » |
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Hey, it's coming up on election time
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BarbaraD
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Re: OUCH BOARD.....
« Reply #17 on: Oct 25th, 2003, 9:45pm » |
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Sherry, what I meant is write an article on why life's so uncertain (because of the headaches...) Why you can't commit to something. We've all been there - heck we're all there. But we can't all put it in writing. My goodness, I can't even promise a child I'll be at his football game because I dont' know if I'll have a headache or not that night. - like I said we're all in the same boat. But we can't all put it in writing. You can.. Hugs BD
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brain_cramps
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Re: OUCH BOARD.....
« Reply #18 on: Oct 25th, 2003, 9:50pm » |
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Guess that means Sherry is gone.
I can relate with what she was saying about financial difficulties. It really does make it hard to make a commitment when you don't know if you'll have an internet connection or where you'll be living.
Hopefully she'll be back soon, but this time I'm not sure. 
grant
Quote:| Barb, in the time you've been gone over the last couple of years... |
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hmmmmm... interesting.
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Donna
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Re: OUCH BOARD.....
« Reply #19 on: Oct 26th, 2003, 9:17am » |
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I'm really trying to be fair here.........
Re: the above remark in "quote marks":
My post does not require any further discussion, but think about what goes on behind the scenes. We have many discussions going on now without adding any more until the ones on the floor are answered.
I haven't discussed this thread with Barb and she might not even like me writing this, and quite honestly I only know a couple of the answers to these questions, but ....
Do YOU know who orders, receives and ships the items in the OUCH on-line store? Is it done single-handedly?
We do miss Barb during tax season when she posts less frequently (Feb., March and April, I think), but I don't think she's accumulated 486 posts in just the last few months.....and that's just on this new board count.
The only reason I'm posting this here and now is that the topic was brought up.
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brain_cramps
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Re: OUCH BOARD.....
« Reply #20 on: Oct 26th, 2003, 9:28am » |
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The only reason I noted that quote was because of the unfair exchange between Barb and Sherry.
kinda seemed the the pot calling the kettle black.
Whaterver Barb's reasons are for "vacating the board", I don't think she has any right to make backhanded comments to/about Sherry when circumstances where obviously out of Sherry's control.
i calls em as i sees em,
grant
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Donna
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Re: OUCH BOARD.....
« Reply #21 on: Oct 26th, 2003, 9:39am » |
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Thats a good thing....to call them as you see them. I'm not trying to be critical. We all have our right to our own point of view, but you know, for the life of me I can't see where Barbs remark was insulting. I've read and re-read it. It looks to me like Barb was trying to encourage Sherry. See how differently we interperate things on the on the internet?
I, too, hate to see Sherrys feelings hurt. I don't like to see anybodys feelings hurt.
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BarbaraD
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Re: OUCH BOARD.....
« Reply #22 on: Oct 26th, 2003, 9:46am » |
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Oops, I think that my comment was taken out of context. Sherry said she wanted to do the newsletter, but circumstances prevented her from doing it. All I said was, if she couldn't do the newsletter - (and she did say she had a good six months coming up right now) to do an "article" for it about her experiences FOR the newsletter.
What she was posting about her "experiences" sounded like what a lot of us have/are experiencing and it would make a "good" article. She can write so that would benefit us all to see it put in print. That's how to get INVOLVED in OUCH if one wants to get INVOLVED. I thought that was what she was wanting to do.
My point is EVERYONE can do SOMETHING to be INVOLVED in OUCH. If everyone does a little a WHOLE LOT gets done. But if we depend on a few to do everything they burn out and then where are we? We ALL want to get rid of these damn headaches - that's our GOAL - we don't need to lose sight of that.
Everyone has SOMETHING to give... Some time, some money, some skills, and some just a word of support. I talked to someone yesterday who said she just wanted to make a difference in one person's life.
Sometimes with the headaches we take things someone says the wrong way and not at all the way it was intended. I think that was the case here. I'm just a little hyper and think everyone should jump right in and do something for OUCH. The quicker we all go to work the quicker we'll find something to cure my aching head. And today wouldn't be too SOON!! I've been hit 4 times since last night...
Hugs BD
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nancyc
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Re: OUCH BOARD.....
« Reply #23 on: Oct 26th, 2003, 11:13am » |
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For alot of you that dont know MOM...Barb D...let me explain..OK? First of all..she is a motivator..she encourages folks or should i say, she pulls them up by their apron strings?...she says what she has to say and sometimes does not think how she says it...but believe me..she never means to hurt you...she has kicked my butt plenty of times and pulled me out of the gutter...but ONLY to help me... NEVER to hurt me....I am very very thinskinned...she is very very tough skinned...we are opposites...but we are friends...in fact, best of friends...I respect her....Sherry, I read this post four times and promise you that Barb was not trying to put you down....In fact, I wish she would be so nice to me ...She calls me a dumb blonde..In all families there is a need for someone like MOM that puts out ideas for some of us that needs encouragement ..I know she has been off the board for awhile but I also know why..Like Donna said, Barb works behind the scenes for OUCH in ways alot of folks here dont even know about...Maybe she should bill us and we might realize..Now, if you want to jump on someone, jump on me as i have not done enough for OUCH....Sorry for putting my two cents worth in ..but we are a family here ...and I really wish we would all pull together....I hear enough arguing at my house to last a lifetime...I love you guys!!!!! Can we all kiss and make up now? nancyc
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Donna
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Re: OUCH BOARD.....
« Reply #24 on: Oct 26th, 2003, 11:21am » |
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No we can't kiss and make up, Nancy.....at least not until you look at that darned smiley face you put up there with all the teeth sticking out, and close it's mouth a little. LOL
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