I remember when Dan asked me what I thought of his heart diagnosis. I distinctly remember telling him that although he may have a great doctor, I think we need to be our own advocates for our health. I told him that no one knows our bodies like we do and so we should partner with the doctors and not just be a sheep. He agreed.
I threw myself into learning all about Cardiomyopathy. I went on web-sites and message boards and read of other people who had Cardiac Heart Failure. I posted that we had just learned of Dan's disease and that I was terrified of losing him within 5 years as I had read. People wrote me private messages offering help and hope. They told me what they were doing and taking to feel better. I was so relieved I ran down to Dan and told him he should join this message board. I told him that people were offering to speak with him and share their experience.
He looked at me and said, " You are talking to people about me? I told you not to speak to anyone about this. I am NOT talking to strangers and I don't want to hear any of what they have to say."
I was incredulous, and ANGRY!!!
WTF, I am trying to help you!!! I am also trying to help me have some hope that you aren't going to die.
"You feel free to do what you have to, but, don't tell me. I do not want to hear it."
I had SO MUCH anger for Dan at that moment. Anger is not something I had felt very often and I wasn't sure what to do with my anger for Dan.
I stopped telling him what people had for advice and there again was my friend, isolation.
I googled the shit out of his disease and I ordered books. I ate up any information I could find. He didn't want any part of it. He refused to read the books or talk to his cardiologist about any thing that I had read that may possibly help him.
I read books by a famous cardiologist, Dr Steven Sinatra. He wrote about supplements that people with heart disease are missing and could take to help keep them out of the hospital and let them live better quality, longer lives.
Dan and I had a HUGE fight about his. He yelled at me to just stop being the Google Dr. He had full trust in his cardiologist and if he felt they would have helped he would have told Dan.
Baaa, so we are sheep.
I was so angry at Dan for not even TRYING to help himself, or me!
I always thought of Dan as a fighter, but he just seemed so resigned that this was the way it is and he had to accept it. I felt like I didn't know this man.
I spent years researching Cardiomyopathy. I know more about it than I ever wanted to know. I read books, spoke to people, scoured the Web for hours... But for what? He didn't want to hear a thing that I had found out. It was agonizing for me because I had hope that maybe I could help him. Maybe I wouldn't lose him after all!
We couldn't even have a conversation without it turning into a huge fight and usually with me in tears.
I may be able to help you and you won't even fucking help yourself? And, you are allowing me to live with all this anxiety and stress without even trying?
I felt that he had just given up, not only on himself, but on his wife's feelings.
Anger was becoming a close second to isolation as my new BFF.