Repeat this to myself every day at least 100 times. I had no idea! I get frustrated and feel like surely there is something wrong…why is this taking so long…people, all people, even the ones that care about me but have no experience and/or knowledge seem to think it will make me feel better if they tell me “it takes time and patience”. No one ever said this will take everything I have got. You are going to be hurt and angry for no reason. That my own body is going to work against me. Exhausted for no reason, chronic pain in my ribs and chest, a huge and ugly incision down the middle of my chest that does not want to heal. It is taking everything I have got, and some days I do not know how much more I have….
The doctors, nurses and hospitals have taken good care of my disease, my broken heart and I am so very grateful, but they have done nothing to take care of me and that is the pain that needs the most attention, right now. I was never told what how much pain and discomfort to expect or how long it would last, how much energy it was going to take just to sit up and be awake. Our medical system is horribly horribly broken, they focus on and honor the disease and my broken parts. My quality of life of life while healing and afterwards has been ignored. It is backwards. All I wanted to accomplish with my life was to live well and with meaning. Right now I am doing neither, and that hurts as much as the exhaustion and physical pain.