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!"


Music is loading really slow lately...sorry...

Tuesday, January 17, 2017

Palliative Care

My dear friends, this is not how I wanted to share this with you, so please accept my apologies right up front. The thought of calling each of you separately and having to explain it  over and over again, was more than I could do...But it was important to me  that you hear this from me with calm resolved love and I did not want you to find out from others and panic unnecessarily.   Six weeks ago, after long soul searching and 6 years of extremely difficult, painful and expensive curative care I chose to begin palliative care through a local hospice organization.
I know the word hospice is scary, believe me...I know, but I need you all to understand that it is different now.  Hospice is the only way, in the state of Florida where terminal patients can receive palliative care, and palliative care is the type of medical care that is going to help me have the best  most productive, happy life I possibly can with all of the medical and emotional support I need.
Before making this decision, I had the most amazing opportunity to spend some time with a nationally known palliative care physician, Dr. Ihrig, He has been a magnificent gift to me and we still communicate via email and phone. It was a strange and unusual set of circumstances that brought him into my life and I truly believe that the Universe had a great deal to do with it.  He has a TED talk that I suspect will explain palliative care and my feelings much better than I ever could,  I have included his video if you want to understand more.  I love you all…. And I need you to know….I am not quitting….I am choosing to live the best life I can!

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