life, love,art. heart failure and assorted ramblings

life, love,art. heart failure and assorted ramblings

Don't Talk Like That...

I write to find out what my heart thinks....
I write to expose and work through the ugly parts of this disease, open heart surgery that was less than successful and more recently an S-ICD (internal cardiac defibrillator) implanted in my chest that will hopefully restore my heart beat in case of sudden cardiac death. I am here to celebrate my life, to uncover my fears, to hold on to love, to learn how to live a full life with heart failure, to honor my creativity, and to explore all of my emotions out loud ...before anyone can say
"Don't talk like that!"


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Sunday, September 13, 2015

How much more....


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….

                 "Heart of Gold"  Neil Young

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.

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