Books for Weggies

[NicShaf]

Hey everyone, just curious what books you may have read or are in the process of reading that have to do with Wegs, or coping with illness/ medications, or anything along these lines.
It was brought up a couple weeks ago when we were talking about famous Weggies and someone mentioned Wendy Shanker...just ordered her book today, very excited! :)

I just finished "The Anti-Inflammation Diet & Recipe Book" by Jessica Black. It was pretty interesting. Some things were a little extreme and I don't think I would follow it to a tee, but for the most part I plan to adopt the healthy habits she recommends.
I give it 3.5 out of 5 stars.

I just started "Vasculitis, Sick and Tired of being Sick and Tired" by Sheri Schwar. Sheri has TA, another form of Vasculitis, but so far I like her writing style.

Just ordered:
"Coping with Prednisone" by Eugenia Zuckerman
"Are you my Guru" by Wendy Shanker
"The Art of Getting Well, Maximizing Health when you have Chronic Illness" by David Spero

Love to hear if anyone has read these and their thoughts.

[pberggren1]

Thanks Nicole. I will have to check out some of these books.

[freakyschizogirl]

I'm glad you've recommended the anti inflammatory book, i've been looking at that for a while.

I have 2 wegs related books but to my shame i havent picked them up yet - There must be a reason and Eye on the prize. Well i did start off with There Must Be A Reason but i didnt get on well with it.

[delorisdoe]

I read Are you my guru. I did like it. She is the same age as me and was diagnosed the same year as I was. The book is filled with alot of random thoughts-yes including what Madonna was doing etc-so I was able to relate to that stuff. There is a part in the book where she sends away to the kansas city support group and she receives a packet from them. In the packet they mention that the lady who started it had passed away from a non wegners related cancer. I was part of a mailing group for wg at the time and I remembered getting that exact email.

I have to admit I really only see myself reading this wegners book as it was funny and I dont want to do sad.

[NicShaf]

I'm glad you've recommended the anti inflammatory book, i've been looking at that for a while.

I have 2 wegs related books but to my shame i havent picked them up yet - There must be a reason and Eye on the prize. Well i did start off with There Must Be A Reason but i didnt get on well with it.

Amazon.com has the best deals on the two books you mentioned, and they have a couple different anti-inflammitory diet books.

[marta]

Well I have to put my two cents into this thread because as many of you know we've started our own book project. The idea is that because this disease hits all of us in such unique ways and also that our bodies react to the meds in such unique ways it is much better to have a book with a whole bunch of WG experiences than just one. I did get the pred book and it helped me a lot, I also considered getting the two books that Sam mentioned but they seemed a little depressing and also just one person's story, so I decided against it, and came up with the idea to pool all of our stories together. So far I have eight submissions (all men) and the momentum seems to have fizzled out a bit. I still believe with all my heart that if/when we put this book together we will have something that we'll be proud of that can help the newly diagnosed in so many ways. I spoke with the Vice President of the Canadian Vasculitis Association (all doctors) and he thinks this is a brilliant initiative and the doctors would love to see something like this. I think once it's done we can even pitch it to be manditory reading in med school. We, together, here, can make a positive difference for the future. The same way this forum has helped us all, a book can help many people in the future.

So if any of you are interested in submitting your story to the book, please send me a personal message with your email address and I'll fire off the outline. The outline is intended to get us all to tell our stories in a similar flow of events, so that when someone is reading it, they have a better basis for comparisson. I have someone who is interested in publishing the book and failing that I'll pay for self publication with the money I've made from the sale of the Weggie products (and I'll top up whatever needs to be topped up.)

[pberggren1]

Thank you Marta. I think I am going to start on my story.

[Hammy8241]

Amazon.com has the best deals on the two books you mentioned, and they have a couple different anti-inflammitory diet books.

If you are not fussed about the books being new, then , at least in the Uk, try this link.

Waterstone's Marketplace: New and Used Books (Used, and Out-of-Print Books) (http://www.waterstonesmarketplace.com/)

Just enter the book name or author into the search box.

[NicShaf]

Marta,
I sent my submission to the Weggie Book Project a while back, I hope you recieved it. I can resend it if need be.
I can't wait to see the finished product, it will be neat to read a bunch of different Weggie Stories.

[marta]

OMG Nicole,

My apologies!!! I did get your submission, and you are the only other female (other than me :rolleyes1:) who submitted - Bring it on ladies (and gentlemen):w00t:

[freakyschizogirl]

I started my life story today...think it will need some heavy editing!! Will be exciting to have an encylopaedia of Weggie stories.

[NicShaf]

OMG Nicole,

My apologies!!! I did get your submission, and you are the only other female (other than me :rolleyes1:) who submitted - Bring it on ladies (and gentlemen):w00t:

Cool, thanks:)

[NicShaf]

I think I have a pretty neat idea, I hope others think so. I've ordered a couple "Weggie" books. I'm about to finish Vasculitis, sick and tired of being sick and tired. I thought it might be fun to pass this book around to anyone who wanted to read it. I'm almost finished with it, and enjoyed it, but it's silly for me to keep it because I'm never going to pick it up and read it again...so why not let others enjoy it.
I was going to sign my name in the back and ask the next person who receives it to do the same. This way, not only are you reading a story that you can relate to,but all these people who wrote their name in the book also relate to you.

Thoughts?

[elephant]

That is a great idea!

[Sangye]

What a neat idea, Nicole. :thumbsup:

[NicShaf]

Cool! Anyone who's interested, send me a PM, I'll send it to the first person who responds.

[marta]

I started my life story today...think it will need some heavy editing!! Will be exciting to have an encylopaedia of Weggie stories.

ha ha ha... my life story could use some heavy editing too.

[Rini]

I really hope people do their story's, I am excited to read the book. will they be under the group names or real names? If I get done with this graduating thing and better at spelling I would like to hear peoples story's and like have them dictate it so they can be done but then it won't sound the same as them telling it will it? I really like books that have each chapter by a different person and I really like hearing about other peoples experiences with this crazy thing. I feel almost too new to finish mine...I think the drama will slow down soon enough to be a "conclusion" on this chapter but I still have a tube in my lung so not this week.

[pberggren1]

I think your story would be awesome to hear Rini!!!!!

You should not think that you are too new to this that your story would not matter. And your spelling is just fine. Good spelling has nothing to do with how you tell your story.

[Rini]

U don't have urs done do you? well you can't read mine until I get yours :P I really want yall to do this

[pberggren1]

It's a deal then! I will do mine as soon as I can. I will start on it next week. This week I have to travel to see the lung doc so it wont get started this week. It shouldn't take too long. I am thinking it will be around 5 to 10 pages long, but who knows for sure.

[freakyschizogirl]

It's a deal then! I will do mine as soon as I can. I will start on it next week. This week I have to travel to see the lung doc so it wont get started this week. It shouldn't take too long. I am thinking it will be around 5 to 10 pages long, but who knows for sure.


Good luck seeing your lung doc phil.

My problem with writing is i tend to rant! :ohmy::w00t:

[Rini]

Good luck seeing your lung doc phil.

My problem with writing is i tend to rant! :ohmy::w00t:

Rant! it is good 4 u, but maybe edit a bit so its not 2 long:thumbup:

[freakyschizogirl]

lol thanks Rini!!

[malin]

lol mine would be a proper rant as well. lol we could all write our stories down n then make it into a book, it would prob get in the world records book for the book with the most rants ever! :p
Although it would be very interesting to read, also very scary for the medical world to read, considering how many mistakes are made and how looong it usually takes to diagnose us! :/ could be very controversial! :p perhaps we can start a Weg revolution to make people and doctors more aware! :p

[elephant]

I agree, we need to make all doctors aware and go the extra mile for their patients. Im ready for a REVOLUTION!

[marta]

That's one of my plans with the book we're all putting together (Malin, you in?) to pitch it to universities as part of the reading material for docs in training. I think it would definitely be an eye opener for many. It would be great as part of their 'rare disease' part of the curiculum.
Bring on the revolution!

[malin]

I can def. try to write down my story properly, the only hard part is that I don't remember that much of it :/ I remember pain so bad I cried like a baby, ER visits that did no good etc etc but I can't actually recall in detail what was going on, I think my brain sort of "blocked" out a lot of what was happening and also blocked things out afterwards because it was all to painful and traumatic to go through. :/ I will have to talk to my parents, friends and family to get their input but it would be really cool to be part of it! :)

[marta]

Malin, send me your personal email address in a PM and I will send you the outline. I've made up an outline so that we all tell our stories in a similar flow of events and information... that way when someone new to this disease reads it they can compare apples to apples so to speak. I will also lay out the book so that it's easy to use as a reference book (when people are in this at the start they're not interested in 'stories' but want information - at least I know that's how I felt) but as you get on in the process then you start to want to read about other peoples stories and experiences... so the book will fill both requirements. So send me your email address and I'll send you the outline. This goes for anyone else too who hasn't seen this or isn't aware of it.

Yeah..... a Weggie revolution.

[NicShaf]

Good luck writing your stories! I really enjoyed writing mine, it was very therapeutic for me...and I know I haven't been through as much as some of you have. I can't wait to see the finished product.

BTW, I finished Vasculitis, sick and tired of being sick and tired, by Sheri Shwar. I really enjoyed it. I don't agree with the writer on all her thoughts, but most of then I could totally understand. She is very honest and forthcoming with her feelings, and I related to her because of that. Also, she was my age at diagnosis, so I understood where she was coming from in her life perspective too. Let me know if anyone wants to read it next...

[elephant]

I have been preoccupied with family/keeping up with the wegeners disease and need to buckle down and write my part.

[NicShaf]

I don't want to push this book at anyone, but I just wanted to bring it up again in case anyone was interested. I have "Vasculitis, sick and tired of being sick and tired" by Sheri Schwar if anyone wants to read it next. I'm more than happy to mail it out.

It is an autobiography from a young woman with TA. She is very forthcoming and honest in her book. There were parts I enjoyed, and some I could have done without, but all in all I could realte to her and what she has been through.

Let me know if you're interested.

Thanks!