Sick Girl Speaks!: Lessons and Ponderings Along the Road to Acceptance

by Tiffany Christensen

Surprise! I'm still not dead! Okay, sure, I was born with an incurable genetic disease and, yes, I have faced terminal illness two times but here I am! And I'm ready to speak!I've now been navigating the Western medical maze for over three decades. Along the way, I've had to learn some pretty painful lessons about how to advocate for myself and what happens if I don't. I also know how scary and disorienting illness can be-I have a lot to say about finding peace and acceptance, no matter what your diagnosis.I offer you my advice, my humor and my personal journals as a window into the often quiet world of living with illness. Whether you are a patient, family member or medical professional, chances are you will find something between these pages that you never knew.Medicine is a complicated maze. The time has come for a medical revolution-let's do it together!

208 pages, Paperback

First published October 4, 2007

Reviews

[Heather · Rating 5 out of 5]

Wow! What an interesting book. The author has cystic fibrosis and has had two double lung transplants. While this book is not necessarily about her "story," it relates the lessons she learned from her illness. It is applicable to anyone who has had a chronic or long-term illness, and also very appropriate for ALL medical staff to read. Thankfully, it is not a sob story, like most CF books. Although I don't agree with her religious stance, the rest of the book is strikingly accurate to my thoughts in regards to life, death and illness. I could have written most of it myself! A very thought provoking book for those who are not sick, and a very comforting book for those who are.

[Mary · Rating 5 out of 5]

This book was absolutely life-changing for me. Providing a spectrum of practical to esoteric advice for patients, this text is invaluable for any long-term patient in a health care setting. It is particularly valuable for young women, and for those undergoing a health crisis during independent times in their lives. A must-read for cystic fibrosis patients and lung transplant recipient, care-givers, and medical professionals.

[Kelly · Rating 5 out of 5]

Must read for anyone struggling with chronic life-threatening illness or people treating or helping those in this situation. Very real, and spot-on. She's your new bff.

[Jim Gleason · Rating 5 out of 5]

As a veteran of reviewing many transplant related stories and books, I have to say that this one is in a class by itself, a very interesting and different book filled with insights and sound practical advice for navigating what the author refers to as the Medical Maze. You get some taste of that different approach by both the title of the first chapter: “Still Not Dead” and in her opening salvo announcing its time for a medical revolution, moving forward into the age of patient empowerment. And that is what you will find in her first 32 chapters offered in a variety of formats including personal journal entries (subjects like That Which Is Important, poems, etc), letters (to her beloved, to medical trainers, to death, to doctors, to an intern), chapters of experience and advice, usually ending with “What I know now” insights and a dose of humor. Don’t miss her “Top 10 Opportunities of Illness” as an example. All these chapters are short, often leading with a question and closing with the answer she has come up with for that same question. This brevity and variety make for easy reading, while the subjects themselves are far from easy, running the gamut of just about every medical challenge you hope you personally never have to face. Her wide range of topics cover from choosing a doctor (she doesn’t tell you who to choose, only what to look for given your own individual needs); life purpose (“Isn’t that what most of us are looking for?”); to facing death (facing death more than once and now working in hospice, she openly discusses death from many angles); dating and finding a lasting relationship given a long term illness and these medical issues in her life (yes, she finds her soul-mate, but not without some trial and error); and so it goes on for 193 pages and 70 total chapters, each unique in their perspective making for very interesting reading.

But the real power in Tiffany’s writing is that she balances the brutally honest pains and drama of finding the way through that Medical Maze (and later in part 2, the Emotional Maze) with positive ways she has found to survive and in fact, thrive, through a life predicted to be very short with Cystic Fibrosis, but living today after life saving two double lung transplants, transitioning from spoiled sick kid, to mature writer, public speaker and loving wife, sharing life and survival tactics to help others. She offers deep, thoughtful insights for medical professionals, patients, caregivers, family and friends who find themselves dealing with the seemingly impossible day to day realities of long term illness.

Here are two quotes to give you a flavor:
Quote: …on being wheeled in for her second lung transplant -- "I went under anesthesia with fear pulsing through me, and a deep understanding that my fate was up to someone much greater than I or my emotions. It was a truest moment of "Give it to God" I've ever known."

Quote: "In time, I learned that the illness wasn't my choice, but whether or not to suffer was. Every day, I had the choice to focus on my physical pains or my inner joy. What I never understood before going to hear the Lama speak was that the two can simultaneously exist."

Given the variety described above, you shouldn’t be surprised to find that there is a closing “pop quiz,” but have no fear, it comes with an answer key. I got 100% right after reading the whole book, so lets see how you do.

PS: Don’t confuse this book with another recent publication, Sick Girl. The titles and medical challenges may be similar, but the approach and tone are much different.

see this and more than a hundred other organ donation/transplant related books - many with my personal reviews - at http://www.trioweb.org/resources/book...

[Laura · Rating 4 out of 5]

I liked the first half of this book better than the second, because the first half was more about the author's experiences with doctors and hospitals and how to advocate for yourself. It gave me a few pointers I should look out for and also helped me realize the importance of preparing key family members to advocate on my behalf if I am unable. I think it's a true testament to what I've experience with doctors/hospitals and this book helped validate and reinforce that only you can truly be in charge of your health care.

The second part of the book was more about the author's emotional experience dealing with a chronic illness and facing death. In some ways I could relate, but in other parts I could not. For example, the author talks about not feeling worthy with men, so she'd take verbal abuse in relationships because she felt she had to 'make up' for her illness. I never personally felt that way, so while it was hard to relate to that feeling, I can understand where she was coming from. From the brief glimpses into her childhood that the author gives, I think she had a lot more struggle with her health than I did, so maybe this is where our experiences differ.

Overall, I am really happy I read this book, especially since it's about CF and Transplant - I think I could get the most out of it...however, for anyone (patient, caregiver, nurse, doctor) who deals with chronic illness, I think this book could give you some insight and ideas on how to be a better advocate as well as help you see you're not alone in the journey.

[Judy · Rating 5 out of 5]

This is a remarkable book by an extraordinary woman. It is written for everyone who is facing a life-challenging illness, will someday do so, or cares personally or professionally for such a person. Oh wait, that's all of us. We are blessed that Tiffany Christensen got her second wind, then a third, and used it to share with us lessons from the patient side of life.

Not only does Tiffany have wonderful suggestions for negotiating this difficult path which no one chooses to travel, she has a lots of eye-opening and humbling observations for health professionals as well. This book is both a how-to book through the medical maze and a guide on how to thrive while you're there. At times when this author scarcely had the breath to open her dresser drawer much less pull her clothes out or put them on, she built a rich inner landscape of growth and acceptance.

I am privileged to have met Tiffany in the wonderful world of the blogosphere. I look forward to someday hearing this "sick girl" speak. Meanwhile, I'm ordering five more copies so others around me can benefit from what she writes.

[David Jay · Rating 3 out of 5]

Christensen writes openly about dealing with serious illness for virtually her entire life. The book consists of journal entries and short essays. She shares her ideas for how people can improve their interactions with, and thinking of, people who are ill.

I had the great good fortune to hear Christensen speak earlier this year (the dream of becoming a public speaker, which she writes about in 2007 is a reality in 2015) and she was one of the finest speakers I've seen. Funny, smart, and unafraid. I was very moved by hearing her speak about (and write about) her preparations for dying, when she was given 6 months to live.

As a professional patient advocate myself, reading this book was a little bit of a busman's holiday.

[Leslie · Rating 4 out of 5]

This is a book with a deep and balanced perspective on illness, the patient role, the medical provider role, healing, dying, and death. It has excellent advice for anyone struggling through the overwhelming complexities of the patient role, or anyone trying to understand that role. It offers insight into how we can face pain, fear, anger, and uncertainty and find peace, love, and a new sense of self. It is pragmatic and easy to read. I hope Tiffany has great success on the rest of her path, and can pave the way for others who suffer to suffer less, find meaning, and heal.

[Kari *illnessinspiredwords* · Rating 4 out of 5]

Wow. Having Cystic Fibrosis myself I found this book chalked full of practicality. Tiffany who self published this book has CF, recipient of two (2) double lung transplants and patient advocate gives such insight and wisdom behind the emotions of dealing with an illness. She takes you on a journey of the process of grieving her near death and then back to celebrating life. Powerful. I would recommend to anyone who is or has someone in their life dealing with an illness.

[Amy · Rating 4 out of 5]

I found this book to be an interesting insight to one individuals thoughts on dying and grief. What I found most interesting is the overlap of emotions between grieving the death of self and grieving the death of a child. So many of her personal insights were also discovered by me after my son's death.

[Michelle · Rating 4 out of 5]

This was written by a friend that used to work at my hospital. She has cystic fibrosis and works as a patient advocate. So far I have found her book to be very touching and well written. Definitely a good read for someone currently dealing with an illness but also a good read in general.

[Diane · Rating 5 out of 5]

This is a must read book for learning how to handle illness, the need for self advocacy when ill or for anyone who may need to be an advocate for someone who is ill. Far from being depressing, it is written in a forthright and empowering manner.

[Sarah · Rating 4 out of 5]

I saw Tiffany speak last year and was inspired by her story, so I decided to read her book. She has incredibly insight and wisdom--this book contains lots of thoughtful commentary on being "sick" that can be applied to anyone's life--sick or well.

[Dean]

Reffered by the Peoples Pharmacy on NPR.

[Laura · Rating 5 out of 5]

Published by a woman with CF who has had two double lung transplants, this book gave amazing perspective on the physical and emotional aspects of dealing with illness. This book changed my life.

[Colleen Rue · Rating 5 out of 5]

Tiffany is a wonderful person.I loved this book.It is full of insight and wisdom.

[Annie · Rating 5 out of 5]

Nonfiction/Memoir: great perspective on being a patient, girl with cystic fibrosis