I don't think anyone knew less about diabetes than I did when I got that phone call on a Friday afternoon in early March 1995 telling me I had this illness. I was told I had "bad diabetes" so I knew it wasn't good but I didn't know exactly what it meant. I wasn't aware there were different types of diabetes or that I was diagnosed with type 1. All I knew, or thought I knew, was that diabetes was somehow connected to sugar and that now I was not going to be able to have candy. Ever. It was a while before I learned that was not true. My five day stay at the hospital following that weekend enlightened me somewhat, but not enough to feel confident in knowing what I had to do once I left the hospital. For years I struggled with many burning questions that went unanswered by the string of doctors I had, until I found one amazing endocrinologist who started me on the right path and gave me my life back. My diabetic life, but life nonetheless.
I was relieved to find out there are answers to my questions and there are others who struggle just like me. I realized it wasn't all my fault that I was always feeling sick and my sugars were out of control. And things started to make more sense. I began to talk to other diabetics and soon discovered that many of them felt just like I did - confused, frustrated, lonely, misunderstood. I joined online discussion forums and was astonished by how many diabetics lacked fundamental knowledge about their illness and how to take care of routine problems. They were either never told what to do, or the explanations weren't clear, so they took to online forums to get answers to their questions from other diabetics like them. For many diabetics their peers were the most important source of information, and I noticed the same questions being asked practically every day. Questions that should have been anticipated and answered by medical professionals at diagnosis or shortly after, and certainly over years of treatment. A few years ago my co-worker's 19 year old daughter was diagnosed with type 1 diabetes at the hospital where I work. She has been away at college and not feeling well for months. Her symptoms were missed by her doctor and it wasn't until she was visiting her mother at work that she had her blood sugar checked after she fainted. I watched as she went through the same ordeal I had many years earlier. Mostly I noticed what she wasn't being told, and how instead she was bombarded with overwhelming and confusing information. I was shocked to see that nothing has changed since "my day".
For years when searching for answers to my diabetes-related questions I longed to find one source of information that would tell me all I needed to know. Most books I came across were tailored to type 2 diabetics and there were plenty of resources for them. Type 1, however, wasn't as well represented. Sure there were some great books about different aspects of the illness, such as carb counting or the insulin pump, as well as personal stories, including a few from celebrities. These helped me a great deal, but still what I wanted was a manual - a book that would contain all the pertinent information in one place. A book I can show my non-diabetic friends and family so they can finally understand what it's like. It's not that I couldn't explain it to them, it's just that I didn't want to complain, and I figured hearing about it from somebody else would make them take notice.
So I decided to write a book like that myself. I called it "Life After Death...of a Pancreas: A True Story of Living with Type 1 Diabetes". I wrote a book I wish had been handed to me when I was first diagnosed. I wrote a book to show what it's like for one juvenile diabetic who is far from perfect, but struggles to learn as much as possible about her illness and apply it to daily living. I wrote a book to show those newly diagnosed what will happen to them step-by-step and to explain how they got there. I wrote it for those who deal with diabetes on a daily basis, make mistakes, are hard on themselves, or sometimes give up altogether. And finally, I wrote it for non-diabetics so they can understand what it's like for us, and what we want them to know, although we may not always communicate it.
It took me a couple of years to write it and when I was done I was faced with the dilemma of how to get it out there - to all of you. I tried publishing companies but found it is practically impossible to have your work read without being represented by an agent. On the other side of the coin getting an agent for a non-fiction book on a very specific topic isn't a piece of cake either. So I decided to go with the times and do what many writers do these days - I self-published. It has been a long and difficult road, and I'm still continuing to make my book available in various formats from different sources so as to make it easily accessible for anyone wishing to read it. At this time it is available for Kindle and NOOK as well as other formats, and I'm working on getting it out in print form at an affordable price. This book would not be possible without the support and encouragement of my fellow diabetics from various online forums and groups. Online diabetic communities are a wonderful resource for all of us to connect and support each other, share our experiences and know there is always someone there who understands. My book is dedicated to all of them.