The single best resource I have come upon so far is the book Sick Girl Speaks! by Tiffany Christensen. This is a book written by a fabulous cystic gal who had two double-lung transplant surgeries -that's right, two different transplants of two different lungs at a time. 6 lungs in her body over the course of her life.
I recommend this book to anyone who wants to learn about chronic illness as it is experienced from a patient perspective. I recommend it to my own friends and family who are trying to understand what I am going through right now. Tiffany and I happen to share a lot of the same views (not all, but a lot), and I find myself in the pages of this book over and over again.
You can find more info on the book at Tiffany's website, http://www.sickgirlspeaks.com/ .
Tiffany is great. I met her a few months ago and really enjoyed her :) I ordered the book, but haven't had a chance to read it yet. I will have to break it open soon!
ReplyDeleteI got (and read) that over the summer, and I agree! While I can't entirely relate to everything, as I'm not to the same point yet that she was (and you are), I identified with a lot of her experiences, and agreed with her P.O.V. a lot as well.
ReplyDeletePlus, she was (is? can't remember) followed, and had one of her transplants at my center, so as much as I love Love LOVE my actual doctor and nurse cord. and clinic in general, and the majority of the folks on the "CF floor" of the hosp., I actually cried a little in the chapter where she talks about how mean the I.R. people could be, being left in the hall, etc., b/c then I knew it wasn't just ME they apparently hate...they're just, mean, or weird, or whatever.
I'd also check out "Life Disrupted" (and corresponding blog, achronicdose.blogspot.com) by Laurie Edwards. It's basically about chronic illness in your twenties/thirties (prime of your life! young and healthy!! etc). She's also a creative writing professor/instructor, so she kind of reminds me of you and all your creative-y-ness :o)
Love and Cheers,
Jess