found a semi famous wegners patient...

[NicShaf]

BOTH BOOKS ARE YOU MY GURU AND FAT GIRLS GUIDE TO LIFE ARE 20 dollars on Amazon books I ordered them today

Let us know what you think of them. I looked them up on Amazon today too, but I ordered "Vasculitis, sick and tired of being sick and tired" instead. It had some good reviews online. I think the "are you my guru" will be my next purchase, it sounded good too.

[Kami]

sick and tired of being sick and tired" .

OMG this is what I have been saying for years, before I knew I had vasculitis.

[delorisdoe]

I got are you my guru from the library today and it is really good.

[Kimbangu]

I bought that book. But I wish I had paid more attention to the fact that Madonna is mentioned in the subtitle, ( "How meditation, medication and madonna saved my life") because there is an awful, awful lot about Madonna, -and Ms. Shanker's obsession with Madonna- in this book. Ms Shanker seems to have tremendous personal issues regarding her weight and of course she has already covered this in a previous book. But this doesn't stop her dragging it all out again. As a European I found it quite interesting to see how the American Medical business handled her (eventual) diagnosis. She also tries a lot of whacky , crackpot "alternative therapies" which I bet weren't cheap. She is a really good writer though, and the book is entertaining.... Up to a point....

She decides to stop taking all medication at one point, which I must say is a novel approach. She ain't no guru in my book, but she's a gifted and entertaining writer.

[chrisTIn@]

Her name is Wendy shanker. Google it.

I did.
With this Youtube result...
YouTube - Are You My Guru?, Wendy Shanker - 9780451229946

Madonna is certainly not my guru, allthough I like some of her songs very much.
Still I found the things that Wendy says about stress, meditation and being in the moment quite interesting.
(I'm also the kind of person that looks at her watch after ten seconds...)

[Kimbangu]

I have emailed back and forth with her extensively (she and I share a ENT, and a neighbor's sister is a good friend), and she wrote an article for Self or Shape or one of those magazines about how after the first time she went into remission she went into deep denial when she started becoming symptomatic again and wound up in absolutely horrible condition. I have no idea of where her head is at now, but it is definitely a cautionary tale (I read it shortly after diagnosis and was horrified).

Thanks for this absolutely fascinating post, it is also quite a cautionary tale. I did wonder how Ms. Shankers condition had progressed. I saw an online review of her book which ( wrongly ) stated that it was a description of "how she had beaten Wegener's".....(?) What I DID like about the book was how relentlessly cheerful she is about the whole thing, and it's nice to read something upbeat about Wegener's , just for once. Personally I think "taking charge of your own destiny" might not necessarily be the best approach to take with a beast like Wegener's. But I guess Madonna is a good role model for her ( the book is like a homage to Madonna) and I agree mental attitude is probably THE best weapon we have for keeping in remission. I do like Ms. Shanker's writing and she is a good ambassador for WG, in my view.

[Kimbangu]

I did.
With this Youtube result...
YouTube - Are You My Guru?, Wendy Shanker - 9780451229946

Madonna is certainly not my guru, allthough I like some of her songs very much.
Still I found the things that Wendy says about stress, meditation and being in the moment quite interesting.
(I'm also the kind of person that looks at her watch after ten seconds...)

It's fascinating that in the first few seconds of that video she says "doctors couldn't help me?". Then later she says the main thing that saved her was medication. I wish she had gone into more detail of the financial and medical insurance aspects of her diagnosis, and concentrated just a little bit less on Madonna. Surely a successful, vivacious young woman in NY could afford the best medical treatments? You can't help liking her though. And I do agree that stress is one of the biggest things we need to avoid.

[delorisdoe]

I finished the book and I really liked it. The madonna references did not bother me if they had I would have stopped reading it.