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Title: Help with Cluster Book - Please! Post by Jill on Apr 19th, 2003, 11:44pm Since I have not heard of anyone, as of yet, offer Sommelier any help with the Montel William show idea - I have volunteered some of my services. Yes, I have already taped a CH attack for him and will soon have it on the way for further modifications and such. I am still hoping that others will also be able to do this because the more help that sufferers provide - the more we can get out of it. Besides this, I have offered to be the editor for the booklet that everyone has talked about putting together. I am offering all the services that I have right now but I do need help - is anyone willing to give me a hand? I am trying not to ask for much, just for some of you all to go through the past posts and choose that may be helpful in getting the general public and medical community to become aware of the hell that we live in. I am going to get started as soon as possible and as soon as I can think clearer, I will post more information for you. Sommelier explained it best before and I am hoping that he will read this and also offer some insight. Thanks to all in advance and I am sure that if a group of us if not all of us put our heads together, we can get something done. Thanks, Jill I hope that this makes enough sense - I just spent my fifth night in the emergency room this week alone and am full of dilaudid. If you have any questions, concerns or ideas please dont hesitate to email me at: rajibar@starpower.net (will be ending shortly) or clusterh@netzero.net or even at Marty's email at: clusterh@hotmail.com. |
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Title: Re: Help with Montel Booklet - Please! Post by Ree on Apr 20th, 2003, 7:33am I will help Jillzyyyyyyyy let me know what you need... got a guinea pig too if ya need one... (Dave) LOL... my email is Ree16angel@aol.com and I have two screen names on aim Ree16angel and Reespirit99 if you see me there give a holler... ps are you going to the convention...??? Ree |
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Title: Re: Help with Montel Booklet - Please! Post by SommelierCH on Apr 20th, 2003, 7:37am You go girl!! Inspire us to do something. We are not powerless, no matter how much the pain. Jill and I would like to compile some posts and threads off of our message board and archives into a Booklet/CD/floppy, to send to Montel (and many others), which will graphically and heart wrenchingly tell our story, in our own words: “Dances With The Beast—Living with Suicide Headaches”. If there are, eventually, profits from the Booklet/CD/floppy, all proceeds go to OUCH. The beauty of this plan is that the Booklet has already been written, it just has to be put together. Since all the posts, were posted, knowingly and proudly, in the Public Domain, for any and all of the world to see, there are no copyright problems. But, who would object anyway? It’s for the cause. All of us have told our story here—now it’s time to make it count for something!!! “NO PAIN, IN VAIN”!! Here are the categories that I have mapped out, for the different posts, to be included in the Booklet and the general flow: Definition of our pain. How we support and love each other. The strength of the Supporters (you are angels for all of us). Short bio’s of personal hell. Hassles with Doctors. Hassles with Insurance. Hassles with Employers. How we deal with our families, how our families deal with us. Remedies we’ve tried, to relieve the pain. Scripts given for meds that do nothing for CH. Meds that fuck up your life. Financial burden of CH. Heartbreaking posts, that still make us cry. Heartwarming posts, that still make us cry. The fact that people have found better relief from their pain, from a lay group of anonymous strangers, than they have from the trusted Medical Community, posts. Any life-threatening misdiagnosis’. Suicide. We have 19 categories. If ten people would search for the best posts or threads in just 2 categories each, we could whip this out in no time. I am working several jobs right now, trying to climb out of this financial/bankruptcy/IRS pit of hell, that I am mired in; and Jill is getting whacked 8 times a day with CH's, so we could really use some help. Contact Jill, the editor. Let’s band together, as a family and get this done. FUCKENEH!!! David J. |
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Title: Re: Help with Montel Booklet - Please! Post by Jill on Apr 20th, 2003, 8:05am This is great - I love to see things finally come together and I am so happy that I can be there to help! I am going to go through some of the posts tonight - or try to as it depends on my head - to see what I can find. I am going to assume that we can go back to when this board first began which means that I really need help! I am not sure how long we want this book to be but I am going to assume that it is going to be an in depth type of book, right? Anyways, I that maybe each person, if they want, can write something really short about their cluster experiences since we are all different. Maybe when they stared - no one ever forgets that first hit, when they come and how it impacts their life. Then each one of us would be mentioned in the book. Does that make sense? Then when someone read a story on the board for example like mine, 'dances with the Beast' (just an example - first that came to mind), then they would be able to imagine who the author is better. It would make it more personal, dont ya think? Also, whole threads dont have to be there but we can pick out bits and peices of what is best, carries the most meaning and so on. I know what I mean but it is hard to explain. Once I work on it and you see, it wll make more sense - promise. How does it sound so far? Ree - thank you, thank you, thank you for the offer. Any help is appreciated and I will try and stay away from the ER so that I can work on it and try to chat with you. My AOL name is (dont laugh ;)) FarmerGJill. Now - who else is gonna help? I mean if I can work on this and I am fighting like I am - than I know for sure that others of you can..... Jill PS - best to use the clusterh@netzero.net address or Marty's! Thanks.... |
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Title: Re: Help with Montel Booklet - Please! Post by Jill on Apr 21st, 2003, 9:16pm Just wanted to bring this back up to the top just in case anyone missed it.... If anyone is interested in helping out with this booklet that would be great and I would greatly appreciate it. Even if it is just some ideas that you have, that would be great! Thanks a lot.... Jill |
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Title: Re: Help with Montel Booklet - Please! Post by BobG on Apr 21st, 2003, 10:47pm I think everyone here has a favorite that would fit into one of David's catagories. The message that always sticks in the mind. The post that makes you say "Damn the was good! Why can't I say something like that?" Maybe it's a "Now that was my best message ever!" or a He/She couldn't have said it better" or a "That had to be the biggest bunch of hooey I've ever read (or posted). Damn, I'm proud of that" It could be your very first post or one you read in the guest book. Find that one message and send it. Then go look for the next one. Please. clusterh@netzero.net you got mail. |
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Title: Re: Help with Montel Booklet - Please! Post by firebrix on Apr 22nd, 2003, 5:15pm Help offered here. Just let me know exactly what you want me to do. firebrix |
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Title: Re: Help with Montel Booklet - Please! Post by Jill on Apr 22nd, 2003, 7:11pm on 04/21/03 at 22:47:55, BobG wrote:
Couldnt have said it better myself - please, there has to be atleast one that sticks out in your mind! And I got that one you sent - thanks, just what I wanted! on 04/22/03 at 17:15:49, firebrix wrote:
Thanks! Any kind of help is welcome - I am trying not to ask for too much because I know that people are busy and such but just going through some of the archives and checking out what is there. Maybe - just what BobG said - send your first post or one that post that you really like. Or even ideas on how to get this together is welcome... Thanks again for the offer - any other takers on helping? Remember, this is for the greater cause and we all want to see something done about CH - am I right? Then it is time to stand up and take some action ourselves and not rely on others - right? Jill |
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Title: Re: Help with Montel Booklet - Please! Post by SommelierCH on Apr 23rd, 2003, 4:39am Thank you, Ree. Thank you, BobG (Well said). Thank you, firebrix. To help Jill out with the editing, I would ask everyone who submits a thread or a reply from the Message Board, to label it with one of the 18 categories (with the new, correct ending, I don’t know how I could have overlooked that), that it fits the best. Definition of our pain. How we support and love each other. The strength of the Supporters (you are angels for all of us). Short bio’s of personal hell. Hassles with Doctors. Hassles with Insurance. Hassles with Employers. How we deal with our families, how our families deal with us. Remedies we’ve tried, to relieve the pain. Scripts given for meds that do nothing for CH. Meds that fuck up your life. Financial burden of CH. Heartbreaking posts, that still make us cry. Heartwarming posts, that still make us cry. The fact that people have found better relief from their pain, from a lay group of anonymous strangers, than they have from the trusted Medical Community, posts. Any life-threatening misdiagnosis’. Suicide. How the vision of one man (DJ), changed our world, with hope. In case there are too many submissions (or duplicate submissions) in one category, the editor will let us know where our scavenger hunt focus should be. The editor should decide how she wants the submissions submitted. I.E. Do you want just the link to the post or thread, or do you want them to “save as”/ “Web page—text only” and send it to you as a file, or do you want them to “highlight, copy and paste” into Word and send that file to you ready to edit as a Word document? The latter option seems like it would save you many steps. Perhaps, also include the link. Dearest Jill, you are a gem, and I’m sorry I’m so late getting back to this. Regarding some points that you brought up earlier in this thread. Quote:
An in-depth type of book should be our long term goal, but I was hoping to get a “booklet” up and running, to present with your video tape. Maybe only one page per catagory, or combine/eliminate some of them. I would imagine a 20 page maximum. Easy to navigate, easy to read. Something that a network executive (not just Montel) could skim/read and grasp in 15 minutes. Quote:
Everyone has already written about their different cluster experiences, it’s in our archives. It is already, more personal. It’s in our own words, at the time it happened, I don’t think a separate bio, at this time would add anything. This booklet was designed, so that we didn’t need anyone to take the time to compose a literary segment, everything has already been written. Quote:
Absolutely. With all the other stuff that is posted on each thread, very few “whole” threads, would work. In essence we are looking for the best reply (or a string of them). However, as editor, you will probably want to see the whole thread, just to get the context. Row, row, row your boat… David J. P.S. Jill, maybe you should rename this thread and leave off Montel, perhaps that's confusing. |
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Title: Re: Help with Montel Booklet - Please! Post by Jill on Apr 23rd, 2003, 12:07pm That sounds great - much more manageable for me to work on right now.... I will, however, keep everything and work on a larger book because that is what I love to do - you know, the reading and the writing. (quite geeky, huh? ;)) on 04/23/03 at 04:39:57, SommelierCH wrote:
I would love it if it could be sent through word, only because it makes it a bit easier for me to read and pick what we need and so forth. And, yes, the link so I can read the entire post - you hit the nail on the head. And if you cant send it through word, then the link is fine - I am really not picky! Just in need of help! Thanks again to those that have offered to help and who are helping. (I think I forgot to thank you Ree - so sorry about that :-[) I was also thinking - there I go again - that this book could also be sent to doctors and others in the medical community in order to bring out awareness - isnt that what we want? I think that this was already mentioned but my mind isnt what it used to be..... ::) Guess it doesnt hurt to re-mention it though. :-/ Okay that is all - come on gang - round 'em up and send them in - the posts that is! Jill |
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Title: Re: Help with Cluster Book - Please! Post by Mark C on Apr 23rd, 2003, 4:29pm |
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Title: Re: Help with Cluster Book - Please! Post by SommelierCH on Apr 23rd, 2003, 7:10pm Thank you Mark C. Jill, Yea baby! My overall plan is to have this booklet available is several forms for distribution. I.E. on a CD, or a floppy, or as a downloadable PDF format and of course a physical "Booklet". Any newbie could download it (or part of it), print it out and be able to take to their doctor. Eventually, we should have a full package on CD, with lots of the medical info contained in the OUCH library, ready to take to the Doctor's appointment. Our pain, in our words. I don't see a better way of getting the word out (until we go national on TV), and telling our story. Row, row, row the boat, David J. |
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Title: Re: Help with Cluster Book - Please! Post by firebrix on Apr 24th, 2003, 2:53am I spent most of today trolling the archives too so like MarkC I'm still working on it. Wow. There's some STUFF in there! AWESOME! Crosseyed and fumble-fingered now I'm off to bed. Wishing y'all PFDAN firebrix |
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Title: Re: Help with Cluster Book - Please! Post by Jill on Apr 25th, 2003, 1:10pm This is the last time that I am going to bring this thread to the top - promise. Funny because 244 people have looked at this post and so far only four (I think) members have offered to help me out on this. But I am going to give others the benefit of the doubt that they are going to help, thinking about helping or already looking for posts to submit. Guys - I cant do this alone, it takes alot of time and I am giving it what I have got but I still need help. Just as a thought to those that dont want to contribute -this book will go out as a way of educating the medical community and the public about clusterheadaches and isnt that what we want? We moan and groan because they wont or cant help us but maybe, just maybe this book will open up doors and then we can get the help that we deserve. Talk is one thing but action is what it takes. Jill Thanks to those that are helping! |
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Title: The Holy Grail Post by rumplestiltskin on Apr 26th, 2003, 1:21am 6 whole days have passed since you first asked. Quote:
hmmmm...is that all? Speaking as one who often gets lost in the archives for hours on end...and as one who has read this board multiple times daily for many years. I do not consider yer request the least bit simple....unless of course you just want to throw something together....in which case just grab anything and run. Is there some rush that I am not aware of? I sound like a broken record...butt...the design of this "new" board compared to the old one sucks when it comes to researching. It's archaic to have the multitude of replys and offsping threads all captured under one "subject" name which often reveals nothing of the crap or gems hidden within. Look at one page of the "old" board to see what I mean. In a glance of each posts "title" you can see the branchs and forks and follow a particular train of thought opening only the posts that seem pertinent. Sure the banter and birthdays and flamewars are fun when their happening....butt....having to wade thru them during "serious" research is "boggy" and cumbersome at best. ...annnnd it used to be very easy to save individual posts....It takes more steps than I'm willing to take now. Hard drive crashes have taken out some big files of posts that I had categorized. Broke my heart. Takes hours to retrieve some of them...."lets see.... was that 1999 or 1998?" I do have a "goody" file of posts I considered worthy of "historical" and "hysterical" signifigance still on my old MAC that I will go thru for you....it will take time...precious time. I'm sure you are aware of how much time it takes to read just today's posts....and then theres the life I have off this board. Sooooo....yer project is praiseworthy...butt if yer in a hurry...I'm not yer man. Sorry. I'm harshly critical when it comes to judging that something has been "said well". I pray that you are prudent in your choices and yet not as "picky" as I am or you will never get it done. ...oh yeah and don't ferget to smell the roses as you walk in the sunshine den |
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Title: Just asking for a little help here... Post by Jill on Apr 26th, 2003, 6:01pm on 04/26/03 at 01:21:16, rumplestiltskin wrote:
It may just be six days since I have asked but it must be atleast a month or so since this idea was first brought to the table by David. That he is when he went on the search, asking nicely, for someone to work on a book (be the editor) and for the rest of the members to look for posts. on 04/26/03 at 01:21:16, rumplestiltskin wrote:
I am sorry that it seems that by me asking for each person to try and recall their favorite post or one that just simply stands out to them is too much - I am afraid that I dont see it that way. But I guess that we are not all on the same page, are we? It is not that there is a rush to get this done, though the sooner the better is always the best way. I do want this to look presentable and proffessional to whomever looks at it, Iwill be picky on my selections. Isnt that how we are going to get recognition? Everytime I hear someone whine and moan about people not 'understanding' clusterheadaches, I have to wonder how much they expect because these are the same people who instead of whining and moaning could be helping out here in actually getting something accomplished. This is not just going to help those that partake in this creation and I but everyone with clusterheadaches and if you are not one to help, than I am sorry. It is hard to envision the idea of this helping people who wont help themselves. Sad to say that five people right now are the ones that are willing to help - all I want is for atleast everyone or most everyone to submit there favorite, most inspiring, first, or post that stood out the most to them over time. I know that we all have one and I am sure that it is not that hard to find and tell me about - if it is than, I dont know. Jill |
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Title: Re: Help with Cluster Book - Please! Post by jonny on Apr 26th, 2003, 6:41pm FUCKIN BRAVO, DEN!!! I say this because of what you said about the old board. Man!!, those were the days, huh?.......LOL ................................jonny |
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Title: Re: Help with Cluster Book - Please! Post by oringkid on Apr 26th, 2003, 6:45pm I have read alot about this book... and I am going to piss some people off here and others will say yeah, that is what I want to know. I know I have missed a bunch of posts lately so maybe this has been covered... My question is what exactly are you going for here? A real book? To be published and sold at a place like Waldons or Hastings or other bookstores? If so, who do you think is going to buy it and how will it help? If not a real book, something to give to neurologists and doctors to put in their waiting rooms? If so, the people reading it probably already have CH, and the docs, if they read it at all will just know that we suffer, as do all of their other patients. If, as in the original subject I read, it is to send to a talk show host, they are not going to read a big book full of personal posts. They want short, sweet, concise and controversial. I may be completely wrong, but I don't think that talk show hosts are going to go for something that does not really endanger a life. Sad to say but I think that is what you will find. Don't get me wrong, I think your intent is good, but look around. Clusters are now being diagnosed correctly within a few months or so now. Not like when I started getting them! The problems we are facing now, are not so much being misdiagnosed or docs not having heard of CH but that very little research is being done on cause and/or cure. How will a book of our suffering help that? By just making more people aware? How many people do you think that don't have CH and read the book will try to get research started because of it? Not many I would think. They will feel sorry for us, but their money and time will still go to deadly diseases that need research. I hate to piss in everyones cornflakes like this, I really do and I might be banned, but, lets think in realistic terms here. The only ones who would be interested and benefit from something like this are the people who suffer from CH. We have, for the most part, been noticed and acknowledged by the medical community and even some of the regular community. What we really need is research! We need to reach the researchers and the people who fund researchers. Ok, I will admit that this book could help in that aspect, perhaps, but what it would have to get through to these specific people is that there are enough of us to justify the research and the funding for this research! And a book of heartfelt posts that mean so much to us, is not going to affect the people who hold the purse strings. Sad, but true. While I am not saying that we should just chuck the idea, we have to look at things in a hard cold light. This does not kill us. Therefore it is not a priority. Maybe to us it is, but not to those that actually COULD help us. Please remember that I am not trying to be a defeatest or to recommend that everyone just give up, but, things have changed alot since DJ and a lot of us first started getting these things and we have to change too. Lets try to pinpoint what we REALLY need. We don't need sympathy, we need the researchers to want to figure this out! We need them to go for the funding and we need to support THEM! Let's back people like Prof. Goadsby and any others interested in finding a cause and cure. THAT, in my opinion, is where we will finally find help. Ok.....please don't hate me too much for this, but, I have been thinking about this a long time and had to say it. I love you guys. Sherry |
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Title: Re: Help with Cluster Book - Please! Post by Not4Hire on Apr 26th, 2003, 7:05pm ...as usual, I wish i'd said that...... ya rock Sherry....tanks... |
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Title: Re: Help with Cluster Book - Please! Post by jonny on Apr 26th, 2003, 7:09pm Damn Sherry, I no longer call you kid, you have rocked some boat even jonny can enjoy......LOL ;D Hang on tight Sherry, jonny will save you......LMMFAO ;D ................................jonny |
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Title: Re: Help with Cluster Book - Please! Post by Jill on Apr 26th, 2003, 7:14pm on 04/26/03 at 18:45:23, oringkid wrote:
Awhile back, Sommelier posted that he had spoken with Montel about clusterheadaches and possibly having a show regarding them or other ailments that have not been found cures for yet. It was then that the idea of the book was brought up. The book, if you read above, is only to be about twenty pages long with just the best posts that can be found around here. A larger book may be something to look for in the future, like Sommelier said before. And the book would be given out everywhere, doctors offices and to doctors themselves, pharmacies and anywhere else that we can including work places and such. on 04/26/03 at 18:45:23, oringkid wrote:
I hate to argue with you here, but this is not entirely true. First of all, neurologists treat more than just clusters and, despite what you may believe, people in waiting rooms may find this interesting and learn something. Does it really hurt to educate people about clusters because dont we want some form of understanding? That is what I gather from everyone here - correct me if I am wrong. And, furthermore, not all doctors know about clusters - take a look at emergency room doctors or EMT's for that matter. If they did, then would I continually be called a 'drug seeker' or someone going through 'withdrawel symptoms?' So - no not all doctors know and this is our chance to change that and EDUCATE people. on 04/26/03 at 18:45:23, oringkid wrote:
As I said, the book will be short and sweet so that they will look into it. And, not only that, but I have videotaped myself during a hit - together they can and may have some type of impact. on 04/26/03 at 18:45:23, oringkid wrote:
Does it really hurt to get the word out there and, if, in the long run it does help than is it not better to take that chance and try. And how do you know that by some accidental happening, someone will read this and have the power to encourage research? Doubtful - maybe but a possibility - maybe. And if it is placed in pharmacies - we need to try atleast... on 04/26/03 at 18:45:23, oringkid wrote:
This, too, is not totally accurate. How do you know who is interested and not interested in CH? I just spoke to someone yesterday about CH and he was very interested in them and he was also someone who had never heard of them before. on 04/26/03 at 18:45:23, oringkid wrote:
And we are not asking for sympathy, we are asking for help but help does not come from those that just sit back and wait - or atleast I have never heard of that before. In order for people to help us, we have to help ourselves and for this to happen, we have to start small. Yes, we support whoever is helping us now but do you not agree that we need more help than just that? This book may be the key to open more doors. Does it really hurt to see a more positive aspect of this and try? I am sorry for how this may sound but I am determined that this will do us good... Jill |
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Title: Re: Help with Cluster Book - Please! Post by jonny on Apr 26th, 2003, 7:22pm My bro Tony was diagnosed three weeks ago with CH, they got him on Verapamil and butalbital. Poor bastard never knew what hit him......I guess it is a family thing on my part. .........................................jonny |
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Title: Re: Help with Cluster Book - Please! Post by Mark C on Apr 26th, 2003, 7:40pm on 04/26/03 at 19:22:30, jonny wrote:
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Title: Re: Help with Cluster Book - Please! Post by oringkid on Apr 26th, 2003, 7:52pm How many of us have picked up a brochure on a disease that we don't have at a pharmacy and immediately gotten on the phone or sent off a letter to a congressman or the AMA and said "hey, when are you going to help these people" or sent money to help their cause? Not I. In a perfect world, perhaps we would. What do you do in the doc's office while waiting? I usually read Time or People. Yes, I do sometimes browse the pamphlets (less than 4 pages) but do I write a check to help the people? Not usually. Sad, but true. How often have you seen a talk show that did not include death, devastation, loss, controversy or stupid, sensationalized crap? Not too often, cuz it just doesn't bring in the ratings. Sure you could sensationalize it ... Suicide Headaches Killing Thousands! Is that what we want... or need? I think not. No, not all doctors know about it, but most have at least heard of it. Emergency room doctors are not there to definitively diagnose you. They are there to save you or if your life is not in danger, to help you until you can get to your regular doctor. They also see MANY people that DO come in there complaining of pain that cannot be seen (such as our pain) that ARE drug seeking! I cannot fault them for that. There is no device that shows this pain. And withdrawal symptoms are very real and can mimic other things.... It seems to me that a compilation of our personal thoughts, wonderings, and painful experiences, does a lot of good.... for us! Just us. It helps us know that we are not alone or freaks. It helps us support each other. I just can't see how it could help us get research and funding which I still say is what we REALLY need. If we put this book or booklet out, I would hate to think that we would be seen, basically at our lowest, sometimes our whiniest. And as I said that would evoke sympathy, but not necessarily funding. I know that there are many out there who might respond to this kind of thing. All the teary eyed Oprah and Montel watchers would probably take pen in hand and send in their letters and dollars.... but....Where would that get us? Would that produce a research team with the funding to buy the equipment to really study what is going on in our brains? Would it shame the FDA or the drug companies into either approving new drugs for our treatment or developing them, or more importantly making them more affordable? Would the insurance companies relent and agree to pay for what little we have now, which is merely treating symptoms with drugs designed for a different disease? I just don't think so. I have been having these headaches since before you were born. Back then, we really needed doctors to acknowledge that we had something other than migraines or eye problems or sinus problems or dental problems. Now, you don't hear of people having those problems as much. Now is the time to go for the real help. And although on the surface this might seem proactive... it seems to me just another bid for acknowledgement and sympathy. Like I said before, I don't want you to think I am saying nothing should be done, just that perhaps we need to start steering in another direction. Sherry |
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Title: Re: Help with Cluster Book - Please! Post by Jill on Apr 26th, 2003, 8:00pm You know, I am going to stand my ground on this book idea.....good or bad. What we thought negative about every idea that came across for clusterheadaches or anything in general? Think about that - we wouldnt have the meds that we have now, the life-saving procedures that are performed daily and so on. I am not saying that someone is going to look at this book and call someone but it is simply bringing awareness to what we are going through. You know, we get so mad when people dont understand us and we bitch and moan about it - this is a chance for them to maybe get that little understanding so that we wont be compared to migraine people anymore. I think that I am probably repeating myself but people have to know what we go through and, unless you have some better way, then this is a good start. If you dont believe in it, then dont help but in the end it will be your loss. Jill |
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Title: Re: Help with Cluster Book - Please! Post by oringkid on Apr 26th, 2003, 8:08pm on 04/26/03 at 20:00:33, Jill wrote:
I'm sorry, but I am not sure what you are saying here. Sherry |
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Title: Re: Help with Cluster Book - Please! Post by jonny on Apr 26th, 2003, 8:12pm on 04/26/03 at 19:40:01, Mark C wrote: Seems a new suffrerer got lost in the BS, Mark....TY for giving a shit bro!! ........................jonny |
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Title: Re: Help with Cluster Book - Please! Post by oringkid on Apr 26th, 2003, 8:14pm I'm sorry Jonny! My little brain tryin to think and shakin hands distracted me. I am so sorry to hear about Tony. This isn't the same bro you thought had ch last year is it? Sherry |
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Title: Re: Help with Cluster Book - Please! Post by Jill on Apr 26th, 2003, 8:19pm Quote:
What I am saying is that you and others are not looking at what this book can do for us. Maybe instead of knocking it down, you could offer help and let us all give it a shot and see what develops. This is simply, maybe, an experiment and maybe it will work and maybe it wont do anything. I see it is the glass half full - it will do something. What? I dont know. My point was that if no one ever experimented, tried new ways of doing things that we wouldnt have much of what we had today. Give it a go, see what happens. And, if you dont believe in it, than I am sorry for that. I will keep going... Jill |
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Title: Re: Help with Cluster Book - Please! Post by Mark C on Apr 26th, 2003, 8:24pm Hi Yall, I am still working on this, and several other projects. I spend around 10-12 hours a day in front of a screen between work and home. Whew.....my eyes! This is actually a pretty time consuming task because on CH.com alone I am currently searching through 125868 documents in the archives.....and it is kinda slow at times. There is so much information the problem lies in editing them material down to a managleable level. I am taking appropriate fragments from threads and even guestbook entries. I am trying to take only the best parts under each requested catagory, but with 125,000 + pages its is hard.....but I feel good and will keep at it. Mark |
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Title: Re: Help with Cluster Book - Please! Post by Ree on Apr 26th, 2003, 8:24pm what i thought i was going to help with was information to be used on the Montel Williams show... I write so do alot of other people on this board too... let me know what I can do for THAT... as far as a book to be published... been there done that. I helped someone else write a book and got screwed out of everything... Not doing that... Sherry you are on fire... you are right... We missed you! Ree |
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Title: Re: Help with Cluster Book - Please! Post by jonny on Apr 26th, 2003, 8:29pm on 04/26/03 at 20:14:58, oringkid wrote:
yes, Sherry......my brother Tony, Doc says he has CH and Im not happy about it. The fuckin dude dont deserve this shit. ................................jonny |
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Title: Re: Help with Cluster Book - Please! Post by Not4Hire on Apr 26th, 2003, 8:36pm ..tell' im (Tony) to get on-board and start fuckin' rowin'..... nobuddy gets a free ride on this boat... not even YER bro....... ;D http://home.earthlink.net/~carpediem56/_uimages/rower2.jpg |
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Title: Re: Help with Cluster Book - Please! Post by andy on Apr 26th, 2003, 8:37pm jonny, sorry about your bro, bring him around here so we can give him support too! Jill, it seems that you already have written half a book on this thread alone. whats up with that? ...............andy |
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Title: Re: Help with Cluster Book - Please! Post by Jill on Apr 26th, 2003, 8:38pm Thanks Mark for the help - I know that it is time consuming but I appreciate it. Ree and Sherry - I am sorry that you feel this way about it. But Ree - anything helpful for the Montel show would be helpful I am sure for Sommelier because I believe that he is also working on that part - correct me if I am wrong. Jonny - sorry about your brother. Jill |
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Title: Re: Help with Cluster Book - Please! Post by jonny on Apr 26th, 2003, 8:42pm I agree, but I dont think you would tell that to his face......LMMFAO dude would pack your lunch eat it and then kill you.....LOL I spent many years being killed by him.....you think im bad?.....lets hope he dont show up here or on your door step .................................jonny |
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Title: Re: Help with Cluster Book - Please! Post by Roxy on Apr 26th, 2003, 8:42pm jonny, I am so sorry about your brother. At least he'll have a hell of a supporter close at hand. don't mean to intrude on the book stuff here, but all I want are recipes ;D |
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Title: Re: Help with Cluster Book - Please! Post by Charlie on Apr 26th, 2003, 9:21pm Damned sorry about yer brother. A supporter he has though. Did you post about this possibility before? I can't remember. Charlie |
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Title: Re: Help with Cluster Book - Please! Post by oringkid on Apr 26th, 2003, 9:44pm Damn Jonny, that sucks! So, does this mean he is considered episodic? I remember you mentioning that he might have it and then you thought maybe not. Did he have a remission and it came back lately? You tell him we are here for him and he can bitch and complain and vent all he wants. No fair! Is He older than you? Sherry |
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Title: Re: Help with Cluster Book - Please! Post by cerebus on Apr 26th, 2003, 10:28pm A picture is worth a thousand words.....what about cluster art...attempts to depict CH visually? you now have fodder for a potential 20th category. Ready to assist although I have absolutely no literary skills. Ramon |
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Title: Re: Help with Cluster Book - Please! Post by catlind on Apr 28th, 2003, 9:46pm I'm sure that the lack of response is the same reason people didn't send in recipes.... The only post that sticks out in my mind at the moment is little2late. I don't have the time to wade through the archives in search of something that is going to be edited and changed anyway. I've got my hands full planning the convention and doing other projects for OUCH, not to mention taking care of my kids. Sorry I'm not sending in anything, so I guess that makes me not care about exposure or awareness for CH. Cat |
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Title: Re: Help with Cluster Book - Please! Post by Roxy on Apr 28th, 2003, 9:52pm The only one I can think of is Ted's description of a ch. And, I've searched the archives.....but , the archives really don't like me......they tend to make me want to pull my hair out. |
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Title: Re: Help with Cluster Book - Please! Post by Ted on Apr 28th, 2003, 10:04pm The only one I can think of is Roxy's description of naturally aborting a ch. Seriously, sometimes that's the only thing I can think of. |
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Title: Re: Help with Cluster Book - Please! Post by Drk^Angel on Apr 28th, 2003, 11:34pm Damnit... Ted stole my choice... Oh well... Wasn't there another post similar to that 'natural' treatment... Let me see if I can find it... BRB... This may take a while. PFDAN..................................... Drk^Angel |
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Title: Re: Help with Cluster Book - Please! Post by SommelierCH on Apr 29th, 2003, 7:36pm Hey, kids, don’t sweat and worry so much about this project. It’s no big deal. It doesn’t really matter. The less people who contribute, the easier it is to manage. Look at the hassle Roxy is going through, just trying to acknowledge the many people who have contributed recipes. It is a little sad though, that someone could have participated on this board for more than 24 hours, and not have even one good reply, that’s stuck in their mind. David J. |
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Title: Re: Help with Cluster Book - Please! Post by Drk^Angel on Apr 29th, 2003, 10:12pm I think I'm just sad... :'( PFDAN........................... Drk^Angel |
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Title: Re: Help with Cluster Book - Please! Post by pimmony on Apr 30th, 2003, 2:37am I posted in response to Sommeliers thread to ask if you wanted my artwork (that I did for clusters), for this and he kindly replied, yes. In case that was missed under that thread, I am just asserting the offer here. I am unsure where to send it, a couple of the pictures were posted here but I did not post others because the filters do not work well and they looked wrong. Works better printed out. I have read through this thread and take on board all the arguments but I still come down on the side of doing something rather than nothing. I think we have no idea what could happen if this was put out, it could be nothing but chances are if it simply heightens the awareness of one person with the right connections, the ability to employ those connections etc then that would have been missed. There is no reason that in addition to this something else could be done, more in keeping with the ideas of those who are naysaying this booklet? There are only a couple or three folk who keep throwing ideas up like this and they are great, all I feel I have to do is respond with enthusiasm with the abilities I have. Mind you Somm's energy is totally exhausting! (I am agog to see the wine list, by the way, I was reading the thread on the recipe book. Is that finished - or I will send in my recipe for Granny's Fridge Cake (aka not for the calory conscious). I think I will go have a lie down! |
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Title: Re: Help with Cluster Book - Please! Post by SommelierCH on Apr 30th, 2003, 7:08am Me thinks, thou dost protest too much. Hey, come on, you veterans have put in your time and you’ve gotten your wings (in triplicate). I’m not calling you on this. But, please, you ARE (as far as this Board is concerned) role models. I don’t want the Newbies to think, that after all the time you’ve spent on this Board, there wasn’t one memorable post. What kind of hope does that give them? But, if that’s the truth….well….just don’t let them know it. David J. |
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Title: Re: Help with Cluster Book - Please! Post by catlind on Apr 30th, 2003, 7:43am Okay, I've waited on replying, and thought this out and have decided I want to respond to try and clear some things up. The tone of this thread has my knickers in a knot. Quote:
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Either it is time consuming or it isn't. You say you aren't asking for much and then say it takes alot of time, but then say it's not hard to find the posts. Totally contradictory from where I see it. Quote:
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I see the tone of this thread as very condescending. The booklet is a great idea and one that should be followed through on. However, it is not the ONLY thing going on for awareness. A chance viewing of a booklet might help or it might not. We won't know until we try. Don contacting the committee chairpersons from the World Headache Association, the National Headache Foundation, and now the American Headache Society is going alot farther. We've already gained recognition on 2 of those fronts. Dr. Rozen from the AHS is in charge of research on clusterheadaches. That's a direct bullseye that we know we can target. Yet you make it sound like the book is the only means of accomplishing things. |
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Title: Re: Help with Cluster Book - Please! Post by catlind on Apr 30th, 2003, 7:43am Quote:
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First it helps everyone then if you don't contribute you will lose. That makes no sense at all. Quote:
Now this just plain pisses me off. Save your benefit of the doubt. In black and white, I am NOT going to contribute. I happen to be doing a hell of alot of other projects for OUCH and working on many other fronts to gain awareness and education and research. You make it sound as if this is the only project there is going. I see this thread as becoming a condescending damnation of all who don't contribute. I also see a pot calling a kettle black. The cookbook is going to raise money for OUCH. Where there's money there's power. Have you submitted a recipe yet? Sommelier Wrote: Quote:
As I already said, I guess I'm a sad case then. None stick out because they all read as important to me. Sorry that I see everyone's pain and all supporterers as being equally in need and equally loving and caring. Pimmony Wrote: Quote:
Just because someone isn't contributing to this particular booklet does not mean that others are doing nothing. That is the way I see this, as, if you aren't sending in for this booklet then you are doing nothing to further awareness and help for CH. There is more than this going on to raise awareness and gain avenues for research. I do not like that the tone of a thread would be condemning to someone for not participating. If I condemned everyone who can't or won't attend the convention, there would be NO ONE there at all. I sincerely hope I am misinterpreting the tone of this thread, but that's how it all reads to me. Now flame away. |
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Title: Re: Help with Cluster Book - Please! Post by Peppermint on Apr 30th, 2003, 8:42am I don't know what the hell happened to the first time I posted this message, but as I said: on 04/30/03 at 06:27:38, SommelierCH wrote:
David - I realize you may be excited.. BUT . .Whoa NELLY. That (above from your other thread) is QUITE a statement you have made. Lots of people are doing things to advance the cause and IMHO that revolution was started long ago. Successes have come in leaps and bounds. Kudos on your project and everything. I hope its a success. However, I can honestly see why Cat would feel the way she does. |
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Title: Re: Help with Cluster Book - Please! Post by Peppermint on Apr 30th, 2003, 8:48am I don't know what the hell happened to my original post to this message, but as I said: on 04/30/03 at 06:27:38, SommelierCH wrote:
David - I realize you may be excited.. BUT . .Whoa NELLY. That (above from your other thread) is QUITE a statement you have made. Lots of people are doing things to advance the cause and IMHO that revolution was started long ago. Successes have come in leaps and bounds. Kudos on your project and everything. I hope its a success. However, I can honestly see why Cat would feel the way she does. edit: obviously some technical glitch here.. can't remove twin post without deleting. |
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Title: Re: Help with Cluster Book - Please! Post by brain_cramps on Apr 30th, 2003, 8:53am on 04/30/03 at 08:48:55, Peppermint wrote:
Pep: I found it. Its right above your last post. ;) grant 8) |
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Title: Re: Help with Cluster Book - Please! Post by SommelierCH on Apr 30th, 2003, 10:28am Good Grief Cat, So much time, so much precious time, spent cutting down a project only meant for good. Imagine that time spent trying to row the boat, finding just one good reply. Ah, but, I know only too well, that feeling, that you must get your point across, no matter how trivial it will seem in the future. Give it up, for god’s sake. You are absolved. Everyone is asked not to participate in this little project, please spend your time participating in the other projects, designed for your participation to spread the word, that are on the Message Board at this time! As I subtly stated in the second post (and thank you for keeping this stuff on this one), I will now re-state, drop the crap towards Jill’s posts. Jill didn’t have the full picture. Deal with me. Quote me. Jill was trying to wing it, and I wasn’t there to support her. Again, give it up. You are bigger than this. Peppermint, You know that I care for you, from our emails. But, until you or anyone else, dares to show the world what a Cluster Attack is like, by filming it, I stand by my words that Jill is starting a revolution. A revolution of awareness. I know it’s hard for some people to see, outside the comfortable box, after all things are going really well for us now, aren’t they. If it wasn’t for jonny running an underground “regulator railroad”, providing relief to untold amounts of sufferers, could we really be considered pro-active? Please, no one has to participate or feel put-upon for not participating, just spend your time doing something worthwhile, and give us little rowers a break. My goal is not to find a cure, per se. My goal is to get Cluster Headaches declared a disease, with all the financial trappings that go with it. THAT, and only THAT, is what will lead to a cure. Follow the money! David J. |
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Title: Re: Help with Cluster Book - Please! Post by Drk^Angel on Apr 30th, 2003, 10:38am I agree with Cat and Mint, and know that I cannot possibly say it any better, but I do have a couple of things to add. SommelierCH and Jill: It is a very grand project that you two have taken on, and I'm sure that everyone appreciates the time and energy you are putting into the project, but it is your project that you volunteered for willingly. As it has been said before, many others are working on their own projects, or helping with someone elses, and in my opinion, those projects are just as important as your's. It is wrong for you to make comments that appear to place extra importance on this one project, and condemnation to anyone who doesn't help you with it. You should be glad for the help that has been offered, and give recognition to those members, instead of belittling the ones who haven't. You attempt to make it sound like such a small thing you are asking for members of the board to go through the archives and find one post that is memorable. Have you looked through the archive lately? Maybe it's just me, but finding one post out of the many that are in the archives is just about impossible. For the last week, I've been trying to find a post that I remembered reading from a while back and I still have not found it. I can find similar posts and references to the post by using the search functions, but the post I'm looking for has either been lost, deleted, or is buried deeper than I have looked so far. This experience has taught me that finding a post in the thousands of posts that have been collected over the years is the true embodiment of the whole needle in a haystack story, so no, it is not such a small request that you have made Good luck on your project, and I hope it turns out every bit as great as you envision, but I will not be assisting in your venture at this time. PFDAN...................................... Drk^Angel |
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Title: Re: Help with Cluster Book - Please! Post by brain_cramps on Apr 30th, 2003, 10:50am on 04/30/03 at 10:38:19, Drk^Angel wrote:
Me neither!!! on 04/30/03 at 10:38:19, Drk^Angel wrote:
on 04/30/03 at 10:38:19, Drk^Angel wrote:
BTW... Can anyone help me with building a design for a survey database? I'm working overtime at work and don't think I have enough time to do this on my own. (sniff, sob, sniff) ::) grant 8) P.S. Its really cutting into my hockey time. ;) |
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Title: Re: Help with Cluster Book - Please! Post by Roxy on Apr 30th, 2003, 11:02am on 04/30/03 at 10:28:13, SommelierCH wrote:
David, I don't think Cat's intention was to cut down the project. There are any number of people working on projects right now to further the cause of OUCH and clusterheadaches. We know that all the projects underway are only meant for good. Hopefully, all the good work will continue. I took Cat's reply to mean that she was very upset with the tone of Jill's posts. We shouldn't be scolded and talked down to just because we didn't immediately jump to help. on 04/30/03 at 10:28:13, SommelierCH wrote:
I always thought that this was the point of the message board. on 04/30/03 at 10:28:13, SommelierCH wrote:
Now, this makes me somewhat angry. You are absolving Catlind from not helping? Cat, who is helping develop a new survey with Grant.....Cat, who is organizing the convention.....Cat, who is working her ass off to get speakers.......Cat, who is also on the board of OUCH, and working on many other projects...Cat who is trying to help Don with his many duties.....Cat, who is trying to get to England to video Dr. Goadsby for us. on 04/30/03 at 10:28:13, SommelierCH wrote:
Whether Jill had the full picture or not, people do not like to be condescended to. I am sure she didn't mean to sound that way, I am just trying to explain how her posts came across. on 04/30/03 at 10:28:13, SommelierCH wrote:
I think there are a great number of people working behind the scenes that are doing just this (one good example is the days and hours put into the 02 page). They just don't get the credit and publicity they deserve on the board. They don't post about it.....they just work their ass's off instead. I hope this project works out great for you two, and I wish you luck with it. IMHO, Tracey |
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Title: Re: Help with Cluster Book - Please! Post by Mark C on Apr 30th, 2003, 11:16am Good grief yall, I don't think anyone on either side (!) of this ummmmmmm......subject ever meant harm to the other. As a matter of fact I do not think there are even sides...I would like to think we are all on the same side...we have them same enemy. I see both sides clearly. I also think I tend to get a little grumpy sometimes.....I do suffer from the "most painful condition known to man". Does that ever happen to you? Please continue.... |
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Title: Re: Help with Cluster Book - Please! Post by brain_cramps on Apr 30th, 2003, 11:25am David: gimme a break!!! Sure you don't want some cheese with your whine? on 04/30/03 at 11:02:30, Roxy wrote:
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Title: Re: Help with Cluster Book - Please! Post by pimmony on Apr 30th, 2003, 12:52pm You did misunderstand me, Catlind. Saying I think it is better doing something than nothing does not imply that nothing else is being done. It is obvious from the postings that the opposite is true and a great deal is being done and much of it unsung. I am unsure why this project has made people defensive. I simply think of it as something being done to further understanding. I can see why the consequence is unknown but at least it is something and in the whole milieu of things being done, offers yet another communication. In the grand scheme of things it is also something that some folk can do on a different scale than you achieve. I believe you know that you are valued enormously for all the things you do, the person you are and the opinions and information you pen? I am sorry you felt that I was in some way a part of somehow diminishing the hard work in which you are involved, that was not the intention and I hope I have cleared this up? Meantime, where do I send the art ) Notwithstanding the confusion I still want to contribute! |
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Title: Re: Help with Cluster Book - Please! Post by Brian_Y on Apr 30th, 2003, 12:54pm It's all relative. Period. |
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Title: Re: Help with Cluster Book - Please! Post by CathiP on Apr 30th, 2003, 12:58pm Wow! How amazing is this? The 02 project cookin, Roxy surging forward with the cookbook, Catlind setting up a fantastic convention, David ready to blow Montel's mind with details about CH, Jill spearheading the booklet! Lots of people doing lots of things....and that's only the tip of the iceberg! I'm certain I've neglected someone, even though I don't mean to. All these projects are working in concert to get the word out every way possible- and that's the goal. No project is more important than the next.....looks to me the rowing continues in many boats. As long as everyone is moving forward, rather than in circles- isn't that good? Cathi |
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Title: Re: Help with Cluster Book - Please! Post by Brian_Y on Apr 30th, 2003, 1:09pm I have a sandwich board and am standing on the street corner at lunch too, Cathi, getting the word out!!!. You are right what you just said. Pissing contests do little except form huge puddles of piss. |
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Title: Re: Help with Cluster Book - Please! Post by catlind on Apr 30th, 2003, 1:31pm on 04/30/03 at 10:28:13, SommelierCH wrote:
WTF are you talking about? Go reread my post. I in no way attacked the PROJECT. I made it clear it was the tone of the posts. Take your absolution and shove it up your ass. It's great to know that you think only this project has any merit and none of the others do. Get off your fucking ego and realize that there are other people working for the same end and doing it without belittling others or being condescending to them. Quote:
I don't give a flying fuck if you want it there here or in timbucktoo. It has nothing to do with the project itself but the tone of the thread. Whether she knew the full picture or not I was trying to point out how the posts were coming across. If you had actually read my post you would have seen where I said I wanted clarification and was hoping I was wrong about the tone. Quote:
I hate to break it to you but Jill is not the first cluster attack to be video'd. BBC did a special on them and I gave the tape to my doctor. Quote:
I'm glad you can at least acknowledge ONE other members deeds. Too bad that Don's work contacting the World Headache Association, the National Headache Foundation, the American Headache Society and all the rest is not proactive. Don, stop what you're doing, it's not proactive! ::) Quote:
Really? You could have fooled me ... the way everyone was talked down to by not jumping all over this says to me otherwise. So much for impunity. Quote:
Now I KNOW you didn't read my post. You apparently missed the part about the money. You know the part about the cookbook raising money, the cookbook Jill didn't bother to contribute to? Or what about the grants that Don and Bob have been applying for to further education and research? Oh that's right, you don't think that's proactive. I at no time said this was a negative project. In fact I said it was good and needed to be done: The booklet is a great idea and one that should be followed through on. I made it clear that it was my interpretation of the tone. You have now changed it from the tone of the thread to me attacking the project. You give it up. And now I am going to indulge myself and be very petty and immature. One of the projects I was working on that was taking my time, I will now give up to search for the all powerful post. David you have the pleasure of doing Jills website from here on out. I will use the time that I would have spent on that, to search out a post. I don't give a rat's ass what you think of me, but I think that you at the very least should acknowledge the work that Don, N4, Mast, Elaine, Rox, Grant, and others have done to further the cause for CH. Unfuckingbelievable. |
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Title: Re: Help with Cluster Book - Please! Post by Peppermint on Apr 30th, 2003, 1:35pm Mark you may be right - I didn't intend that. Its not a sides issue so far as I see it. Just the point being that there are Many, many rowing here. Nicely said to those who said it. Quote:
I still stand by what I said. Good for Jill for doing her part. I'm sure it took a lot of courage. I'm not taking away from that. I'm sure that should get LOTS of attention. David, what's with the dares, this isn't high school, its real serious stuff and not a competition to me. I do what I have to do and I'm sorry if you consider my comment as "getting in your way" of your project. I remember you asked me nicely not to do that. I didn't appreciate the tone of your reply David. GOOD LUCK with your celebrity thing. |
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Title: Re: Help with Cluster Book - Please! Post by catlind on Apr 30th, 2003, 1:36pm Pimmony, yes that clears up what I misinterpreted in your post. Thank you for the kudos, but I wasn't trying to draw attention to what I'm doing. I was trying to point out how many other people are working on projects. If I wanted fame and recognition I'd have gone to hollywood, not tackled projects for a non profit organization. Again, I appreciate the kudos, but my purpose was not to get them. I am quite happy to rest on my own knowledge of doing a good job. There are just too many other things that are being done right now that are of great magnitude. In particular Don's forging forward with the headache societies to gain us a valid place amongst them. Cat |
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Title: Re: Help with Cluster Book - Please! Post by Brian_Y on Apr 30th, 2003, 1:37pm Catlind, I'll not go to lengths "quoting" you, but may I say just one thing? BWAAA-HA- HA- HA- HA- HA!!! Way to go. That was fucking AWESOME!!!! I want you on my team. Just like that boxer Butterbean says: "When they start cryin', that's when you hit 'em harder". I bow to you.... |
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Title: Re: Help with Cluster Book - Please! Post by Ted on Apr 30th, 2003, 2:32pm Finally, I'm doing something productive to get the word out and to help OUCH. I've been such a slacker in that department. Here are my submissions: Catlind wrote: Quote:This is not just going to help those that partake in this creation and I but everyone with clusterheadaches and if you are not one to help, than I am sorry. Quote:If you dont believe in it, then dont help but in the end it will be your loss. First it helps everyone then if you don't contribute you will lose. That makes no sense at all. Quote:Funny because 244 people have looked at this post and so far only four (I think) members have offered to help me out on this. But I am going to give others the benefit of the doubt that they are going to help, thinking about helping or already looking for posts to submit. Now this just plain pisses me off. Save your benefit of the doubt. In black and white, I am NOT going to contribute. I happen to be doing a hell of alot of other projects for OUCH and working on many other fronts to gain awareness and education and research. You make it sound as if this is the only project there is going. I see this thread as becoming a condescending damnation of all who don't contribute. I also see a pot calling a kettle black. The cookbook is going to raise money for OUCH. Where there's money there's power. Have you submitted a recipe yet? Sommelier Wrote: Quote:It is a little sad though, that someone could have participated on this board for more than 24 hours, and not have even one good reply, that’s stuck in their mind. As I already said, I guess I'm a sad case then. None stick out because they all read as important to me. Sorry that I see everyone's pain and all supporterers as being equally in need and equally loving and caring. Pimmony Wrote: Quote:I have read through this thread and take on board all the arguments but I still come down on the side of doing something rather than nothing. I think we have no idea what could happen if this was put out, it could be nothing but chances are if it simply heightens the awareness of one person with the right connections, the ability to employ those connections etc then that would have been missed. Just because someone isn't contributing to this particular booklet does not mean that others are doing nothing. That is the way I see this, as, if you aren't sending in for this booklet then you are doing nothing to further awareness and help for CH. There is more than this going on to raise awareness and gain avenues for research. I do not like that the tone of a thread would be condemning to someone for not participating. If I condemned everyone who can't or won't attend the convention, there would be NO ONE there at all. I sincerely hope I am misinterpreting the tone of this thread, but that's how it all reads to me. Now flame away Peppermint wrote: I don't know what the hell happened to the first time I posted this message, but as I said: on Today at 7:27am, SommelierCH wrote:P.S. To Jill: Have strength and faith, knowing that you are starting a revolution, for your sisters and brothers. Thank you. David - I realize you may be excited.. BUT . .Whoa NELLY. That (above from your other thread) is QUITE a statement you have made. Lots of people are doing things to advance the cause and IMHO that revolution was started long ago. Successes have come in leaps and bounds. Kudos on your project and everything. I hope its a success. However, I can honestly see why Cat would feel the way she does. |
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Title: Re: Help with Cluster Book - Please! Post by oringkid on Apr 30th, 2003, 3:31pm Jeez Louise! Man did I step in it eh? First, I would like to say, that what I said originally, was not meant to belittle or stop any projects. I merely felt that pointing out, by using our posts, how much we suffer and why we think its unfair and how we never get a break, and how this ruins our lives etc, etc. Might not be real flattering...we might come off as whining. I can just see someone in the Neurologists office that has an inoperable brain tumor feeling so sorry for us. Oh well. Second, I would like to say bravo to everyone, everyone who is helping out with, or heading projects. All projects, any projects. I, myself, have not helped with anything. I don't have money or talent or contacts or sadly to say the self confidence to do a damn thing. So, in reality, I had no right whatsoever to post my opinion on the book(let) thing. Third, I agree with Cat on the tone thing. But, as I seem to be merely sitting in the back of the boat without an oar, I probably shouldn't say that either. Sorry to have caused such a calamity. Sherry |
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Title: Re: Help with Cluster Book - Please! Post by Drk^Angel on Apr 30th, 2003, 3:49pm Dontcha worry about it kid... Ya didn't start nuttin'... PFDAN............................. Drk^Angel |
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Title: Re: Help with Cluster Book - Please! Post by Ted on Apr 30th, 2003, 3:49pm on 04/30/03 at 15:31:30, oringkid wrote:
Sitting in the back of the boat without an oar? You haven't done anything and you have no talents? You were my graphics editor for the last (and that word can probably be used in all its connotations) newsletter. I remember how much time and energy you put into it and how the final outcome looked very professional and incredibly good. You've been rowing. You have been doing important things for us and you have a lot of talent. |
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Title: Re: Help with Cluster Book - Please! Post by don on Apr 30th, 2003, 4:16pm Quote:
No one is defensive over the project. It's the implication that if your not working on THAT project then you are doing nothing. I 've seen projects come and goe here. Some work, most fizzle but they have all been worth an effort and all with good intention. |
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Title: Re: Help with Cluster Book - Please! Post by jonny on Apr 30th, 2003, 4:27pm on 04/30/03 at 15:31:30, oringkid wrote:
No oar?, Hell!!!, Kid...reach on over here I got an oar for ya....WOW!!!! :o :o :o For all the rest....I work solo, something about the underground railroad and negros if im not mistaken.....LOL ;D ................................jonny :D |
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Title: Re: Help with Cluster Book - Please! Post by pimmony on Apr 30th, 2003, 4:35pm Smile, I have been back a day only and already got up folks noses, unintentionally and without meaning to sound mean or unkind. For a writer and counsellor you would think that I had better communication spells! Anyway, my offer to help stands and I shall take it to private messages. I think I am still in recovery and will take a back seat for the moment |
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Title: Re: Help with Cluster Book - Please! Post by don on Apr 30th, 2003, 5:46pm Quote:
No one here is a role model. Everyone here is simply a sufferer looking for help or a supporter offering it. No more. No less Quote:
Cat is rowing more boats right now than you are with your one pet project. You are way out of line pal. Quote:
Got news for you. The "revolution was started long before you , Jill or I got here. Dont get to full of yourself. |
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Title: Re: Help with Cluster Book - Please! Post by SommelierCH on Apr 30th, 2003, 6:38pm I apologize to the Board. I apologize for any statement or inference, that seems to belittle anyone’s contribution. That was not my intent. I apologize for anything I said, that implied that this project was more important than the other projects going on, it’s not. I apologize for my “ego”. I just apologize in general. I’m sorry. Now, I will get back to work, and I will not be participating in this kind of post again. No one should have to defend themselves, or their friends for trying to help the cause. If I caused this I apologize. As I said in my other post, which might have been overlooked --"I pay homage to every Clusterhead that has gone before me, with the same goals. All I can say is that we can’t give up, we have to keep chipping away." I’m sorry. David J. |
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Title: Re: Help with Cluster Book - Please! Post by don on Apr 30th, 2003, 7:54pm Dave Quote:
I dont for one second believe your integrity was ever in question here. A bad approach just snowballed into a worser approach. Worser? Must be that screw top wine speaking again. Peace |
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