10 years ago, I was a healthy, active individual who watched what I ate and had never spent a night in a hospital. That all changed when I collapsed while backpacking in a remote part of the Grand Canyon.
This incident began an ordeal which continues today. It took 10 months, 8 different physicians, multiple visits to the hospital and dozens of tests before being diagnosed with Cardiac Sarcoidosis. In my search for answers, I found an online support group (Inspire.com) where I met some amazing people who were experiencing serious physical problems and fighting the mental battles of trying to remain positive in the face of a painful and life-threatening situation. Their narratives of pain, suffering and perseverance provided both information and inspiration for me as I learned to live with this debilitating disease that so few people (including many doctors) knew much (if anything) about. Some of their stories can be found on this site and will give you an idea of the physical and mental toll that serious illness and injury can have on people’s lives.
While hospitalized for heart failure and emergency implantation of a pacemaker/defibrillator and subsequent open heart surgery, I began to chronicle my experiences as a patient. I was searching for answers on how to cope with and recover (to the great extent possible) from this deadly disease for which there is no cure. I talked with a lot of other patients and found we were all looking to have the best quality of life possible. This is not easy for any patient battling serious illnesses and injuries, let alone those with a rare condition. The good news is that I found a prescription for getting better in several facets of my life. I validated my findings while interacting with both a multitude of caregivers and other patients who were hospitalized with serious injuries or health conditions.
What I learned is that getting better can encompass many different facets of your life. I compiled definitive actions based on my experiences (and experiments) into five categories. I call them “the 5 F’s.” As a patient, we have more ability than we think to involve Family, Friends, Faith, Fitness (mental and physical) and Fun into our own plan for getting better. Furthermore, there is a lot more that friends, family, nurses, doctors and other caregivers can do to help any patient(s) get better. For example, the quality of the interactions between nurse and patient are critical to both the mental and physical well-being of the patient and nurses in a hospital setting. These lessons and actions formed the basis for my book Getting Better. The book speaks not only to patients, but also to their families, friends and caregivers.
Getting Better was written to be uplifting and put a smile on your face while also providing some relevant, implementable actions to help with the process of getting better in some of the different facets of your life. We get tons of meds, but no magic pills. Getting Better will give patients some concrete, proactive steps that can be taken to cope with their situation. The book combines a humorous take on my ongoing recovery with some serious things to ponder on the road to Getting Better yourself! My hope is that you will laugh a lot and be inspired to take action – and maybe in some little way, it will change your life…for the better.
Click Here to order the book Getting Better and/or to make a donation to the Foundation for Sarcoidosis Research (FSR).