The most important lesson I have learned is this. It was a hard lesson and it hurt my feelings but the reality is doctors and nurses do not know me or “care” about the quality of my life, they are not my salvation or my friends.
Their “care” is being paid for. Their job is to investigate and interpret my physical functions and recommend meds and treatments. I am no more or less than a paying customer, just like a customer of the phone company. I wish it were different but in my experience it is not.
I had to change my thought process. I am the only one that cares about and is responsible for me. I am the only one that knows how I feel and/or how I want to feel. The doctors and nurses are my hired professionals; my physical advisers that can help me achieve the life I want to lead. They are not the final decision makers.
The most important part for me about living with heart failure is to continue to create art, facilitating creativity in others, spending time and life with friends, family, living, laughing and loving. I cannot place my amazing life in the hands of doctors/nurses that do not really know or care about the quality of my life…..that is my job and I want to be really good at it!
"Blackbird" The Beatles