|The Lupus Encyclopaedia|
by Dr Donald E Thomas, Jr.
The one I bought when I was first diagnosed was read cover to cover, front to back, back to front, topic by topic, until the print was almost worn off the pages. That book's a bit dated now, but I still wouldn't ever throw it out. It's what told me that what was happening to me had an explanation, that I wasn't the only person in the world to go through this, and there was hope of getting things under control.
Earlier this year, I was sent a review copy of a book that I think is going to fulfill that same role for lots of newly-diagnosed lupies for a number of years to come. It's a good reference for those of us who've been diagnosed for a while as well. It's The Lupus Encyclopaedia, by Dr Donald E Thomas, Jr.
I've been a bit slow to get around to reviewing it for a number of reasons, not the least of which is that I've been struggling with brain fog, and was afraid it was too complex to handle.
It's a huge book. If you're brain fogged, like me, you may think it's going to be overwhelming.
Good news. You don't have to have the concentration to read it cover to cover. You don't have to be an expert on the terminology rheumatologists will use, even though it's written by a rheumatologist.
Once I had the courage to open the cover, I found it was not only nowhere near as intimidating as I thought, but actually incredibly accessible and useable.
The book is helpfully broken into chapters, which you can read as you have a particular need or interest (ie, when a crisis comes, and you want to know what this latest test result means, or what this latest term the doctor is using actually means in the real world.) Each chapter can be read on its own - without needing to have read the chapters that precede it.
It also has an incredibly useable index at the back. (And you know not all books, even the ones that might otherwise be useful, do.)
Dr Thomas does use the medical terminology - but he explains it in everyday language. He manages to do that without "talking down" to his reader, which is a plus. I, for one, struggle enough in brain foggy times without feeling that authors might think I'm dumb.
If a doctor uses a term I don't know, I can make a note of it, and then find it in the index of the book, which will take me to a simple, understandable, explanation.
The information is reliable, and up-to-date. It relies on current research, and Dr Thomas' own and his colleagues' experiences dealing with real-life lupus patients.
I know I'm going to get a lot of use out of my copy. I suspect other lupies will get lots of use out of theirs'.
THOMAS, Donald E, Jr. The Lupus Encyclopaedia: A Comprehensive Guide for Patients and Families. Baltimore: Johns Hopkins University Press, 2014.