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Donna_H
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People of OUCH
« on: Dec 25th, 2004, 4:15pm » |
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Please read the OUCH Members Business Board post by me. Probably my last stand.
Ever watch an ant farm?
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Former ch sufferer (28 yrs.) , current supporter to my 33 yr old son.
One black day (Oct. 2, 2004) my post count of 1200 something, went back down to one. I'm an "old timer" in more ways than one.
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BarbaraD
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Re: People of OUCH
« Reply #1 on: Dec 25th, 2004, 6:50pm » |
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Read it and agree... Someone needs a wake up call.... And I'll bet we'll both get blasted for what we said... but if it walks like a duck and talks like a duck.....
Hugs BD
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john_d
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No disrespect intended to you ladies with this.
I read your thread but I also read the meeting minutes and others about what they are up to. OUCH is just starting to get on its feet and considering the lack of interest when they really needed it, they are doing a great job at doing just that (getting on their feet).
IMHO, right now they need the support of the clusterheadache community and the last thing they need is any kind of wake-up call or a shake up.
Thanks to the current folks at OUCH, good job.
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Donna_H
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Re: People of OUCH
« Reply #3 on: Dec 25th, 2004, 10:55pm » |
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Dear john-d:
You are absolutely right about not needing a shake up and that is not the intention of my post.
My main beef if that we have no clue (other than the BoD meeting minutes, half of which is very old business not yet settled) as to what is going on with our organization.
Please re-read my post. I am not complaining about the work that is being done today.....I am complaining about the fact that we do not seem to be accomplishing the goals that were discussed over a year ago...time sensitive work......missed opportunities to become involved in world scientific meetings now gone by....a list quite long and important.
I compliment those on todays board in their patience and perserverance, but their time is running out....that's one of the points. We have a big board but do we know who is doing what? No. Do we know what is being accomplished? No. Want my guess? It's about 4 people doing it all. Who's names do you usually see when you visit the OUCH members site? Melissa, Mast, Chuck and the Pres.
This is MY organization and Yours. Don't you want to know what's going on? Well, you john, do, but I don't and I care too. I'm not trying to undermine anything or anybody. But I only see what you guys put in front of me and it looks like a bunch of old stuff. We were talking attorney last March.
I've just thought of a few questions more, which I'll ask of the board.
OUCH is a good organization. It is a necessary organization if we are ever going to be instrumental in a cure for clusterheadaches. OUCH will never be anything at all if it's people do not become involved, ask questions and get to work.
You new people.......do you want to know what OUCH is? Just look at the margin to the left and click on it and do some reading. Read our Mission statement and all of the other legal info. Read about diagnosis, cures, helpfull remedies, peoples stories, the letters we receive everyday from people who have just found us and just now realize they are no longer alone with this nightmare.
We are an org. known world wide. We need people who are interested in a cure for these misunderstood and misdiagnosed headaches to get to work and get serious about helping.
If you want to help....ask questions, vote, join in, participate.
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Former ch sufferer (28 yrs.) , current supporter to my 33 yr old son.
One black day (Oct. 2, 2004) my post count of 1200 something, went back down to one. I'm an "old timer" in more ways than one.
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john_d
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Thanks for the clarification donna, I think I did misunderstand, it may have been the 'last stand' remark that threw me off. Other than that, I really don't know anything more than what I read on the boards.
In the past I have seen frenzies where folks with all kinds of different expectations of OUCH coming from 50 different directions at them, while at the same time I hear crickets when they post here asking for various forms of help. It's always struck me as impractical and unproductive, and the attacks just result in people not wanting to get involved at all.
Thanks for your concerns and your help with the program.
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Lizzie2
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Re: People of OUCH
« Reply #5 on: Dec 26th, 2004, 12:37am » |
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Haven't read it yet, and I have nothing against OUCH...in fact, support it all I can. However, I did my best with the Jefferson studies and not too many people jumped at the chance. Then Jefferson didn't want to get anymore names until they got the Zomig study up and running, which I'm told is still "pending." Ah well.... Had my doctor just give me 2 samples of Zomig NS and say to hell with it...I can't be waiting around like this.
I had a lot of good ideas, but they didn't really seem to go anywhere, so now I am putting together a huge project on headache and migraine education for my honors project. It was originallyu going to be on nurses who have chronic pain and the ethical implications of nurses on pain meds, but then when I spontaneously spent 2 hours putting together a brief overview power point presentation and my one teacher asked if she could incorporate it into our neuro curriculum and a few of the staff at the headache center started giving me lots of feedback on it, I decided that I would make that my pet project instead. 
I want my ideas to continue to move forward. I will always support OUCH and everything they do, but I will not stop and wait. So although my project is not just on clusters, I think it is going to be a really big thing in the education of health care professionals on headache conditions by the time I am finished!
Excited about that....
So yeah...I will hop over there and read the boards at some point, but I just wanted to jump in and say that even if I'm not working with OUCH on the original projects that I had brought up, I've sort of just taken initiative to do my own thing...under my own name and credentials
This train keeps on rollin.
L2
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don
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Credentials?
Since when does any body need any kind of credentials to work for OUCH?
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Donna_D.
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Re: People of OUCH
« Reply #7 on: Dec 26th, 2004, 12:50am » |
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Since I authored the following post and posted it in the BOD private forum I see no problem with posting it here as well.
on Dec 16th, 2004, 12:17am, Donna_D wrote:Idea for Convention Meeting. Put together a manual of letters to the insurance companies to help people get additional meds, claims paid, etc. A manual would help a lot more than hearing-sorry we don't have a cure yet...
I think the membership would be better served if we provided them with some ammunition against the insurance companies. A book of appeal letters, listings of State Boards of Insurance, Insurance Terminology and Definitions, something TANGIBLE that will help them get through the day to day battles until we DO find a cure.
I can get help with this....have a couple of people I bet would help do it.
Medical Professionals would still be needed to speak, so that is not what I am saying. I think we need to HELP our members in some way...
Whaddya think? Pro's ? Con's? Ideas? VOLUNTEERS?
DD
Just making some notes here folks...I will forget it otherwise:
Include Letters to get more meds.
Letter to appeal denials of claims.
List of All 50 states Insurance Boards.
Basic Terminology and Definitions
Pre-existing Conditions: defined
HIPAA
Letter to Employer
FMLA Information
Copy of Medic Card (ramon's)
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Just because you can't see something doesn't mean it doesn't exist.
Sincerely
Chopped Liver
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| « Last Edit: Dec 26th, 2004, 1:01am by Donna_D. » |
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Lizzie2
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Re: People of OUCH
« Reply #8 on: Dec 26th, 2004, 12:56am » |
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Yeah I had done a CRAPload of work on the insurance stuff awhile back, but nobody wanted to deal with it. It was too much work in their opinion and they didn't want to mess with it.
That's when I took my patient advocacy stuff and walked. That's also why I find it slightly amusing that now there is a rush for the same insurance fighting/patient advocacy stuff I was discussing several months back after going through battles that nearly cost me my own sanity.
But heck...I'm one person. We do what we can.
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Donna_D.
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Re: People of OUCH
« Reply #9 on: Dec 26th, 2004, 1:20am » |
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on Dec 26th, 2004, 12:56am, Lizzie2 wrote:Yeah I had done a CRAPload of work on the insurance stuff awhile back, but nobody wanted to deal with it. It was too much work in their opinion and they didn't want to mess with it.
That's when I took my patient advocacy stuff and walked. That's also why I find it slightly amusing that now there is a rush for the same insurance fighting/patient advocacy stuff I was discussing several months back after going through battles that nearly cost me my own sanity.
But heck...I'm one person. We do what we can. |
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Lil Sis,
You are more than welcome to help me gather/format information. I would be happy to have your help.
DD
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Lizzie2
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Re: People of OUCH
« Reply #10 on: Dec 26th, 2004, 1:27am » |
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It's ok. It was done. A long time ago. But I can't deal with it now. I have my educational stuff that I'm working furiously to get together while in contact with many headache and other health care professionals to make it as accurate as possible.
Plus I'm checking into the hospital on Monday for what could be 2 weeks or so. I'm running on beyond empty at the moment. This ought to be an interesting stay! Much needed...but hoping it will be much helpful...
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Donna_D.
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Re: People of OUCH
« Reply #11 on: Dec 26th, 2004, 5:16am » |
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on Dec 26th, 2004, 12:56am, Lizzie2 wrote:Yeah I had done a CRAPload of work on the insurance stuff awhile back, but nobody wanted to deal with it. It was too much work in their opinion and they didn't want to mess with it.
That's when I took my patient advocacy stuff and walked. That's also why I find it slightly amusing that now there is a rush for the same insurance fighting/patient advocacy stuff I was discussing several months back after going through battles that nearly cost me my own sanity.
But heck...I'm one person. We do what we can. |
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After reading your post I went back to check on why this project never got off the ground. When I researched the archives I found that the only thing wrong with your proposal (which is STILL a fabulous idead) was in the timing. During the time you proposed your project to O.U.C.H. the BoD was busy plugging up holes in the OUCH dam, Dave resigned due to health issues, we had just lost Barbara and Renee...I am sure everyone remembers all this so I won't rehash it.
No one ever said anything even remotely similar to your following statement
Quote:| Y nobody wanted to deal with it. It was too much work in their opinion and they didn't want to mess with it. |
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Here is a link to the thread in question.
http://www.clusterheadaches.org/members/cgi-bin/yabb/YaBB.cgi?board=news ;action=display;num=1091830348
...in fact you were encouraged to continue the project. It is not that we did not want to work on this project, we just had our hands full holding the entire structure of OUCH together with a skeleton crew.
I am not trying to give you any hassles Lizzie, I am only making sure that the true facts of the situation are known. Too many times people read statements like yours and the others in this thread and take them as the gospel, when in fact, it is not. In fact it is the farthest from the truth.
O.U.C.H. is being led by an incredibly talented, competent, knowledgable, dedicated and caring group of people who give thier time out of love and dedication "for the cause". Repeatedly we suffer the slings and arrows, the sarcasm and accusations from the nay-sayers, and, unfortunately, a poor level of participation from our own membership. Yet we keep on going despite all of the adversity and negativity.
The saying "We will cross that bridge when we come to it" comes to mind regarding your project....the only problem is...we had to rebuild the bridge first.
ALSO, for the record. I and I alone am responsible for there not being a newsletter produced by OUCH. My life, since the first editon issued under me as editor, took a seriously unfortunate turn for the worse. For those of you who know me, you remember and again, I won't rehash it. nor will I use it as an excuse, but I will accept full responsibility. Jonny and Barbara D both paid for ads which have NOT run yet but the information has been given to Ken who has taken over the responsibility for the newsletter as the Chair of the Media Committe. For my failure, I apologize.
Right now I have my hands full planning the 2005 O.U.C.H. convention. When the proposal was presented to the BoD, there was intention for the T.O.U.C.H. chapter to host the convention as a group effort. Now until just a few days ago I have been working on all of this "solo" and I am doing the very best that I can and hope to make it a convention to remember for the members of O.U.C.H.
There are various other projects underway right now but I will let the heads of those committees answer questions about their activities. Answers given only on a voluntary basis, because, you see, O.U.C.H. ~IS~ being run like a business with minutes of BoD meetings being posted and quarterly reports will be issued to the membership.
So when it is said that "Nothing is going on over at O.U.C.H." It is not accurate.
Stepping off my soapbox now.
DD
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| « Last Edit: Dec 26th, 2004, 5:52am by Donna_D. » |
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Donna_H
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Re: People of OUCH
« Reply #12 on: Dec 26th, 2004, 8:30am » |
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Perhaps this thread needs to be moved over to the OUCH site?
Don, I don't think Liz meant credentials per se, I think she meant support, permission, approval of the organization, or something that she could present under the name of OUCH.
Donna D...many projects are being worked on. What has been completed, signed, sealed? This is not a sting. It is meant to be a question from an interestered member.
See you all on the other site?
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Former ch sufferer (28 yrs.) , current supporter to my 33 yr old son.
One black day (Oct. 2, 2004) my post count of 1200 something, went back down to one. I'm an "old timer" in more ways than one.
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Lizzie2
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Re: People of OUCH
« Reply #13 on: Dec 26th, 2004, 9:23am » |
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on Dec 26th, 2004, 8:30am, Donna_H wrote:
Don, I don't think Liz meant credentials per se, I think she meant support, permission, approval of the organization, or something that she could present under the name of OUCH.
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No worries about understandings there...we're good
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Lizzie2
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Re: People of OUCH
« Reply #14 on: Dec 26th, 2004, 10:03am » |
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Hey Big Sis,
No arguing or harm intended, but as there really is a time for everything. Then wasn't the time for my ideas and NOW isn't the time for my help. I've got too much else on my plate right now.
If I make it out of the hospital without any major traumas...we'll see what I can do then.
Working and living in the center of Philthydelphia (as Randy would say) has given me the ability to learn many "tricks" to deal with the health care system. And unfortunately I still see the dispairities and holes 
But right now...toooooo sick to even think of ways to fix anything. Fevers, UTIs, asthmatic junk, bone disease disasters, clusters, chronic migraine...yeah I'm falling into the reality show pit of death. 
I told Billy J that I will try to get my phone number at the hospital to somebody if I get on the computer. I can be found at 215-955-6000 (general patient info number) but you have to know enough info about me (HIPAA!!!!) to get the number. Details to follow I'm sure 
Love you,
Lil Sis
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don
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Quote:| Donna D...many projects are being worked on. |
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Anyone read the "Whats New" page lately?
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Donna_H
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Re: People of OUCH
« Reply #16 on: Dec 26th, 2004, 11:46am » |
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Why, good God, sweet thaing, look at the dates on that page.
Remember when our board sent you to Italy? What a wonderful shot in the arm that was......things were being done (and still may be, if they'd let us know), we were excited......the membership was excited. You did good things for OUCH. Who attended the meeting the next year? We were supposed to, but? I'm sure there could have been more that one delegate, so don't say the person who should have gone couldn't.
I hate to see you picking sides. Why not let's just try to sort things out and get moving in the direction of an election? Is that horse stepping on your foot? My, you seem crotchity this morning.
Why is it that I've been trying for many months, like 3 or 4, actually, and I cannot access our bylaws on the OUCH site? I've reported this several times.
Are we going to move this thread or not?
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Former ch sufferer (28 yrs.) , current supporter to my 33 yr old son.
One black day (Oct. 2, 2004) my post count of 1200 something, went back down to one. I'm an "old timer" in more ways than one.
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nani
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Re: People of OUCH
« Reply #17 on: Dec 26th, 2004, 11:55am » |
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Quote:| I hate to see you picking sides |
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Not really having a clue about any of this, I would like to ask...are there sides? Gosh- I'd hate to think so.
Let me take this opportunity to give a HUGE THANK YOU to all of you who do this for us.
nani (whose plate is already overflowing, I'm afraid.  )
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Lizzie2
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sRe: People of OUCH
« Reply #18 on: Dec 26th, 2004, 11:59am » |
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on Dec 26th, 2004, 11:55am, nani wrote:
Not really having a clue about any of this, I would like to ask...are there sides? Gosh- I'd hate to think so.
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No...not really, at least not IMHO. I do think, however that it could be sort of compared to congress. We have your democrats and your republicans (yes...I know that politics is another of our favourite topics here, but at the same time...OUCH being a non-profit organisation turns it into a "political" issue in and of itself!) --> Anyway...do those lines of republican and democrat in congress mean anything? Are there people who switch hit? Is it a room of a few hundred in the House of Representatives who have a few hundred of their own opinions?
That's sort of the image that comes to mind.
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nani
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Re: People of OUCH
« Reply #19 on: Dec 26th, 2004, 12:05pm » |
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Quote:| Are there people who switch hit? |
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You mean, besides Jonny and don?
Thanks for the info Carrie...
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Lizzie2
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Re: People of OUCH
« Reply #20 on: Dec 26th, 2004, 12:09pm » |
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on Dec 26th, 2004, 12:05pm, nani wrote:
You mean, besides Jonny and don?
Thanks for the info Carrie... |
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hahaha
Here's a quote that will get its own separate post but I'm not kidding when I say I JUST read this and was like...holy crap, I have to post this quote!
"Pain is the deepest thing we have in our nature, and union through pain and suffering has always seemed more real and holy than any other." ~Arthur Hallam
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don
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Quote:| I hate to see you picking sides. |
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When you post openly about an organization expect criticism from those that have no faith in that particular organization that in fact, IMHO, does not come close to fullfilling the "Mission Statement".
OUCH talks up a good game but does not walk the walk.
As I have said before.OUCH is like a garage band that when offered to play Woodstock decided not to come out of the garage.
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| « Last Edit: Dec 26th, 2004, 1:01pm by don » |
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kissmyglass
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Re: People of OUCH
« Reply #22 on: Dec 26th, 2004, 1:46pm » |
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DON FOR PRES!!
things were exciting then.
no offense marc I have the utmost confidence in you....it's everyone else I worry about even though I have no idea who they are.
kev
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Charlie
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Re: People of OUCH
« Reply #23 on: Dec 26th, 2004, 2:00pm » |
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Perfect Don.
Charlie
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don
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Thanks bud but I have no desire to lay across railroad tracks.
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