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


10 thoughts on “Sick Girl Speaks!: Lessons and Ponderings Along the Road to Acceptance

  1. Heather Heather says:

    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 thought 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


  2. Mary Mary says:

    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.


  3. Kelly Kelly says:

    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.


  4. Jim Gleason Jim Gleason says:

    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 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 deaththan 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 andthan a hundred other organ donation transplant related books many with my personal reviews at


  5. Laura Laura says:

    I liked the first half of this book better than the second, because the first half wasabout 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 ch I liked the first half of this book better than the second, because the first half wasabout 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 wasabout 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 lotstruggle 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 ithowever, 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


  6. Judy Judy says:

    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 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 fivecopies so others around me can benefit from what she writes


  7. David Jay David Jay says:

    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 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


  8. Leslie Leslie says:

    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 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


  9. illnessinspiredwords illnessinspiredwords says:

    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.


  10. Amy Amy says:

    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.