Stuff I've Read - Lupus Q & A

In the months since my diagnosis, I have spent as much time as I can reading, researching, and exploring. Anything I could get my hands on so that I could further understand this thing that had taken over my body and I am forced to live with for the rest of my life. The second book I read was "Lupus Q & A: Everything You Need to Know" by Robert G. Lahita, MD, Ph.D and Robert H. Phillips, Ph.D. (2004, Revised Edition, Avery). The authors are a rheumatologist who is a Professor of Medicine and Senior Attending Physician and a practicing psychologist who previously served on the board of directors for the Lupus Foundation of America, Inc. Looking at their credentials I figured they might know what they were talking about. Plus I thought the Q and A format of the book could answer all my questions.

The book is divided into six chapters covering an overview of the disease, diagnosis, symptoms, treatment of lupus as well as medications and the impact of Lupus. Each chapter is made up of a list of questions and answers. The questions have come from the countless number of patients that each of these professionals have treated in their practices and their goal, as clearly stated in the preface, was "to address patients' very real questions". The authors acknowledge that they cannot answer everyone's questions as this disease is so complex and each person's case is individualized, but they hope that the questions they answered are the ones most on the minds of patients as far as their experience goes. I discovered that all of the questions that had been bouncing around in my head were right there in the book. Plus many more questions that I didn't even know I had yet. While reading the book, I found myself going back to reread answers to questions and have even referred to the book on several occasions since I finished reading it.

Lupus Q & A is a great little reference book. There is no personal "this is what worked for me" aspect to it. It is strictly clinical answers from experienced medical professionals, but written in language that is easy to understand even in the densest of Lupus fogs. Definitely one I will keep on bookshelf.

Until next time. Take care of you,
Nicky

Books I've Read - Lupus: The First Year

So I am an already admitted information-aholic. I want to know everything I can about what it is that is taking over my body. Maybe I think that somewhere in all of that information there is that key piece of information that I need in order to control this thing and make it all go away. Like one of my many doctors isn't going to tell me if there was that magic thing.

This is the first book I read, "Lupus: The First Year. An Essential Guide for the Newly Diagnosed" by Nancy C. Hanger (2003, Marlow & Co., New York, NY). It's tag line reads "A patient-expert walks you through everything you need to learn and do." It was one of the only two books on Lupus on the bookstore shelf. It was just a few days after I had been released from my three week "vacation" at the local hospital, I just didn't have the energy to drag myself to the other bookstore and I was desperate to get something into my hands to start reading. The other option was "Lupus for Dummies" and as I just don't buy into all those "For Dummies" books I took this one.

It was an excellent choice to begin with. There was a great deal of information without so much information that it was confusing. And the book was written from the patient perspective so I think I felt like I could identify better with what I was reading. The book covers a broad spectrum of topics, subjects and ideas. There is just enough information that I felt like I had learned something, but it wasn't so detailed that it was overwhelming and I was freaked out. The sections were broken down into "Living" and "Learning" sections. The "Living" sections were more from the patient perspective and I felt like I was getting those day-to-day hints and tips I needed to learn to live with this disease. The "Learning" sections were more research and documented information which made me feel like the author, though just a patient with Lupus, knew what she was talking about and had done her research. The format really worked with where my mind-set was at that moment.

I appreciated all of the topics the book covered. Starting with what Lupus is including clinical definitions, signs, symptoms, through the "accessory" diseases that can come along for the ride, and then ending with an introduction to some of the alternative therapies. As a first introduction, I felt this book really eased me into this whole crazy world of Living with Lupus. I felt I finished the book knowing more about Lupus, understanding a little better about the lifestyle changes that I am going to have to make, being aware of what I could possibly expect to come in the future, and realizing that I still had a great deal left to learn. The book turned me onto the Lupus Foundation of America website, which I had not discovered yet at that point, but has since become a regular stopping point for me. The book also gave a shout out to the "Flylady" Martha Cilley. I've been "flying" with her for almost two years now and it was only because of her that I managed to get out of bed that first morning home. And it is because of her system that I manage to get through my days on the worst of the days without feeling like a total loser and let down to my family. She is a lifsaver and a sanity saver.

I've continued to read since then. Usually one book leads me to another. Currently, I am reading about our poop. Hmmm... I know. You're wondering about where that fits in. I'll explain -- as soon as I'm finished with the book.

Until next time, take care of you.
Nicky