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Topic: Help with Cluster Book - Please! (Read 1402 times) |
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Jill
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Help with Cluster Book - Please!
« on: Apr 19th, 2003, 11:44pm » |
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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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| « Last Edit: Apr 23rd, 2003, 12:08pm by Jill » |
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Ree
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Re: Help with Montel Booklet - Please!
« Reply #1 on: Apr 20th, 2003, 7:33am » |
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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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SommelierCH
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Re: Help with Montel Booklet - Please!
« Reply #2 on: Apr 20th, 2003, 7:37am » |
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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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Jill
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Re: Help with Montel Booklet - Please!
« Reply #3 on: Apr 20th, 2003, 8:05am » |
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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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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Jill
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Re: Help with Montel Booklet - Please!
« Reply #4 on: Apr 21st, 2003, 9:16pm » |
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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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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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BobG
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Re: Help with Montel Booklet - Please!
« Reply #5 on: Apr 21st, 2003, 10:47pm » |
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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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firebrix
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Re: Help with Montel Booklet - Please!
« Reply #6 on: Apr 22nd, 2003, 5:15pm » |
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Help offered here.
Just let me know exactly what you want me to do.
firebrix
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Jill
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Re: Help with Montel Booklet - Please!
« Reply #7 on: Apr 22nd, 2003, 7:11pm » |
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on Apr 21st, 2003, 10:47pm, BobG wrote: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?"
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.
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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 Apr 22nd, 2003, 5:15pm, firebrix wrote:Help offered here.
Just let me know exactly what you want me to do.
firebrix |
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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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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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SommelierCH
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Re: Help with Montel Booklet - Please!
« Reply #8 on: Apr 23rd, 2003, 4:39am » |
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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:| 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? |
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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: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? |
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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:| 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? |
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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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| « Last Edit: Apr 23rd, 2003, 4:44am by SommelierCH » |
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Jill
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Re: Help with Montel Booklet - Please!
« Reply #9 on: Apr 23rd, 2003, 12:07pm » |
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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 Apr 23rd, 2003, 4:39am, SommelierCH wrote:| 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. |
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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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Mark C
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Re: Help with Cluster Book - Please!
« Reply #10 on: Apr 23rd, 2003, 4:29pm » |
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Files to be fowarded.
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SommelierCH
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Re: Help with Cluster Book - Please!
« Reply #11 on: Apr 23rd, 2003, 7:10pm » |
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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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firebrix
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Re: Help with Cluster Book - Please!
« Reply #12 on: Apr 24th, 2003, 2:53am » |
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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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Jill
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Re: Help with Cluster Book - Please!
« Reply #13 on: Apr 25th, 2003, 1:10pm » |
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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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rumplestiltskin
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6 whole days have passed since you first asked.
Quote:| 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. |
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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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Jill
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Just asking for a little help here...
« Reply #15 on: Apr 26th, 2003, 6:01pm » |
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on Apr 26th, 2003, 1:21am, rumplestiltskin wrote:| 6 whole days have passed since you first asked. |
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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 Apr 26th, 2003, 1:21am, rumplestiltskin wrote: 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? |
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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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Re: Help with Cluster Book - Please!
« Reply #16 on: Apr 26th, 2003, 6:41pm » |
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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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oringkid
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Re: Help with Cluster Book - Please!
« Reply #17 on: Apr 26th, 2003, 6:45pm » |
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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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Not4Hire
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Re: Help with Cluster Book - Please!
« Reply #18 on: Apr 26th, 2003, 7:05pm » |
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...as usual, I wish i'd said that...... ya rock Sherry....tanks...
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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jonny
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Re: Help with Cluster Book - Please!
« Reply #19 on: Apr 26th, 2003, 7:09pm » |
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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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Jill
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Re: Help with Cluster Book - Please!
« Reply #20 on: Apr 26th, 2003, 7:14pm » |
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on Apr 26th, 2003, 6:45pm, oringkid wrote: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? |
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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 Apr 26th, 2003, 6:45pm, oringkid wrote:| 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. |
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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 Apr 26th, 2003, 6:45pm, oringkid wrote:| 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. |
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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 Apr 26th, 2003, 6:45pm, oringkid wrote:| 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. |
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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 Apr 26th, 2003, 6:45pm, oringkid wrote:| 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. |
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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 Apr 26th, 2003, 6:45pm, oringkid wrote:| 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! |
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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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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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jonny
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Re: Help with Cluster Book - Please!
« Reply #21 on: Apr 26th, 2003, 7:22pm » |
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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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| « Last Edit: Apr 26th, 2003, 7:27pm by jonny » |
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Mark C
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Re: Help with Cluster Book - Please!
« Reply #22 on: Apr 26th, 2003, 7:40pm » |
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on Apr 26th, 2003, 7:22pm, jonny wrote: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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Dammit
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oringkid
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Re: Help with Cluster Book - Please!
« Reply #23 on: Apr 26th, 2003, 7:52pm » |
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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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Jill
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Re: Help with Cluster Book - Please!
« Reply #24 on: Apr 26th, 2003, 8:00pm » |
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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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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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