October 5, 2012

Day 5: A Must Read

In May, I shared a book that has changed my life. 
POTS - Together We Stand: Riding the Waves of Dysautonomia

POTS: Together We Stand by Jodi Epstein Rhum is the only book I have been able to find about POTS (Postural Orthostatic Tachycardia Syndrome.  It acts as a comprehensive guide for anyone who has this syndrome or knows someone who does. 

It is a wonderful resource and one that I'm sure we will end up with many copies of to share with the people (most importantly doctors!!) in our life!  This book is the perfect gift to give your child’s teacher at the beginning of the year, to donate to your local library, and to share with your doctor’s office.  While you may not have this syndrome, it is more common that most people thing.

Since reading this book, I have started taking it with my to my doctor’s appointments—especially when I meet with a new doctor.  I met with one neurologist who was googling what POTS stood for as he took my medical history.  He didn’t seem too interested in the book and referred me to a neurologist at Vanderbilt for more testing.  Later that day I had an initial appointment with a new primary care physician.  He had heard about POTS but was honest as he stated he could not remember all of the specifics.  I asked him if he’d be interested in reading a little bit about it as I timidly opened up to page 20.  He said sure and eagerly read a few pages.  Although he is not the doctor that primarily manages my POTS, it was comforting to know that he was interested in arming himself with some knowledge to better be able to treat me as a patient.

If you don't know anything about this syndrome, please please PLEASE read it!

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

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