Here goes... my crazy idea

[marta]

So this has been brewing in my head for a few weeks now, and I wasn't sure how to articulate it but I guess that the best way to start is by just plunging in. I'll start in my usual way by giving you a quick insight into the thinking that led me here.

Once I got diagnosed I looked everywhere for books that might give me a bit of a heads up of what I might expect and have to deal with in the future. There are few, very very few. Then I found you guys and as I keep repeating like a broken record, I've gotten so much out of coming here that I can't stop talking about it. I think you all have some amazing stories of strugles and successes and everything in between that this group of people is truly a wealth of knowledge and inspiration, especially considering how few of us there are around the world. Enough beating around the bush....

LETS WRITE A BOOK TOGETHER

If we design it so that it's an easy to follow book, with images and a template for each story (i.e. this is me before WG, these were my symptoms and what it was like to get a diagnosis, this is me on the drugs, this is my 'new normal', these are my successes and accomplishments after becoming a weggie) all written in our own words under the template. We can add photos, a diagram of the body with little 'hot spots' of where it has affected us through the years. I can take that on, I design stuff for a living, so it'll be fun to do something creative for something that I so strongly believe in. I'm also looking into a publisher.

I think a book like that would be a benefit not only for us weggies, but for family and friends, as well as the medical community. I have a friend who is an editor, and she can go over our scribbles and make sure they make sense. Any money can go to research for WG and who knows where things can go.

What do you all think about my crazy idea?

[Lightwarrior]

I like your crazy idea, maybe a portion of proceeds could go to Vasculitis Foundation specifically WG.

[marta]

I like your crazy idea, maybe a portion of proceeds could go to Vasculitis Foundation specifically WG.

I'm thinking most of the money goes to the Vasculitis Foundation specifically WG.

[Lightwarrior]

I'm thinking most of the money goes to the Vasculitis Foundation specifically WG.

Not surprisingly, I like the way you think :hug3:

[elephant]

Marta, I think that is a great idea! The rest of the money goes to triple chocolate muffins! :) Oh prednisone....stop that!

[Terri]

:thumbsup:Wonderful idea Marta and you are even willing to do all the hard stuff.
I know when I was diagnosed, I searched several book stores and didn't find anything. This site has been my life saver and when I was off 8 months from my job I had thought about writing something but I don't have the patience. I like to write little tidbits here and there but not to the extent that it would equal a book, so I ended up just keeping a journal instead. I'm sure most of us have kept some type of journal so now we just have to put our notes together.

[Sangye]

What a great idea, Marta. I love when people think of ways to turn their troubles into benefit for others. :smile1:

[marta]

What a great idea, Marta. I love when people think of ways to turn their troubles into benefit for others. :smile1:

Thanks Sangye, but I'm learning from the best. I think you guys have that one nailed.

I'm going on holidays next week for 10 days and will play around with creating a template that is super user friendly (the user being the reader, not us, we don't like anything easy... in fact we like a challenge, right?)

[andrew]

That's crazy!! :) Brilliant idea. Perhaps it can be an e-book to save money on publishing? Just a thought.

[marta]

That's crazy!! :) Brilliant idea. Perhaps it can be an e-book to save money on publishing? Just a thought.

I thought about that too, but that eliminates any fundraising potential for research - which I think would be gouda. Maybe it could be an e-book and then we ask people to donate some money to WG research. Or we could do both (although I don't think a publisher would go for it if we were giving it away for free). We could solicit some med classes to make it required reading for med students to understand the perspective of the patient when it comes to rare diseases. I also thought of hitting up the makers of prednisone for some money to publish, they are making a little bit of money from vasculitis patients... this all goes through my brain as I lay awake at 2am.

[andrew]

Even though it's an e-book, it can still be sold online although it does lend itself to being 're-distributed' a little easier than a standard paper book!

[marta]

I agree. When I first told Brian (my honey bunny) what I was thinking about in regards to the book, his reply was that it's not a very big market ( ha ha.) My retort was that I need to go into this with a different motive, i.e. not financial. I think I was clarifying the objective in my own head, and yes, it is to help people out of the quagmire we find ourselves in immediately after diagnosis. I think making it easily available is the top priority.
I just know that I like to go to bed with a book, something you can hold on to, and touch and feel the pages. I know I probably wouldn't print out a book if I saw it online - so I think it would be good to have it in hard copy as well. I want to be able to go out and buy a book that I can love and one that can help me out of the ugly spaces in my brain, and I was disappointed when I went to one of our big book chain stores and they had absolutely nothing - NOTHING - on Auto Immune diseases, Vasculitis, and shockingly nothing on Wegener's ;)

[Natalie]

Great idea again :) friends of mine have been pushing me to make a book with my photograghs and has just sent me a link to a site that you can create your own book .. here is the link .. it may be what your after who knows .. nat :) Make your own photo book with Blurb (http://www.blurb.com/)

[Psyborg]

I think this is a great idea. Like others I felt pretty lost with information on the disease until I found this forum. There is nothing like information from other people going through what you are to help you learn about your disease.

[Hammy8241]

Marta, you are so full of energy……are you sure you’re a wegie? :hug3:

Maybe this could be two pronged. A leaflet to give the newbie basic info (not too technical ) but all the things you DON’T get told upon diagnosis with reference the availability of more detailed book.

IMO it is the leaflet which is more important as I will never forget how lonely it is once you have left the drs/hospital and you are by yourself with a pile of drugs and confused as hell as to what to expect or is expected of you. It would be great to take copies to all our drs/hospitals and let them have something to offer newbies hope.

www.blurb.com (http://www.blurb.com) alow you to design , print a good book and will sell it for you too.

[elephant]

Marta, least your productive when you lay awake at 2am! :)

[pwc51]

Great idea, if somewhat challenging! Like everyone else information was scarce at the start and it took a while (a few weeks) to assimilate what the consultant was saying. Just as I was beginning to understand I came across the leaflet (link below) which, despite its age, gives a fair description etc.

http://www.stjames.ie/Departments/DepartmentsA-Z/I/Immunology/DepartmentinDepth/Wegeners.pdf

[Sangye]

I love Hammy's idea of a leaflet. Even at JHU the only thing they have is the VF's info card on Wegs!

[Lightwarrior]

I think it could be in print and an E-book. I love the smell of real books (yes, I'm a book sniffer). The market with Kindles and Nooks, Ipads etc. shouldn't be ignored either. We could even go on a book tour and market, with that million dollar smile of yourr Marta, the public would fall in love with us. :laugh:

[charitygolfdays]

Marta,

Have a look at yudu.com Here you can upload your book when complete, and they will put it into an ebook format. You can use the free version to add it to the library for others to find. I'm upgrading my account to yudu pro soon so will let you have the details aso you donb't have to shelve out any money to design the final version, if that helps?

We could sell it through yudu, but they keep 25% of the price which is a little steep but, it is a great package to get your work published.

Drop me a line and we can discuss it better when the time is right if you wish.

Best wishes,

Jase

[marta]

I'm a book sniffer too. When I was a kid I would go into book stores and just stand there and sniff the air. I know, I'm not the most normal person on this forum.:wink1:

I like the pamphlet idea - that could be the 'baby project' leading up to the biggie. I can easily design something, we can have it in PDF format so that people can download it, we can send it to printers (maybe we can get the various Vasculitis Foundations to pay for print runs and distribution in various countries as this would be more cost effective than doing it all in one place and then shipping the pamphlets.) I can start a new thread where we can all put in our ideas on what should be in a pamphlet for the newly diagnosed.

Lightwarrior I like the idea of the Nooks, and Ipads, etc. I never thought of that as I don't use one, but know lots of people who do. I looove the book tour idea, but only if we do it as a group. My million dollar smile has substantially depreciated in value lately... so I don't know if that would be an assett or a hinderance.:w00t:

[pberggren1]

Crazy? I would say brilliant genius!

When the book comes out in print I think I would try and get copies in all the major libraries around Saskatchewan.

[Brooke]

I think this would be a great idea!:w00t:

[talentx7]

I love this idea. Maybe there could be a section on pediatric WG. I think there are a few of us out there.

[marta]

I think that's great Talentx7. Not that there is pediatric WG, but that you would like to join the book fun.

I just got off the phone with a publisher and have contacted a couple more. They are very interested and think this is a great idea.

We have only one more season to get Oprah to spread the Weggie Word, so lets get on it. I'll be bugging you all as soon as I get back from holidays.