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, April 17, 2011

What More Could I Say?


The greatest BD gift from sister Kelly and perhaps inspiration for a tatoo on my chest before the next doctors appointment!

Saturday, April 16, 2011

And…Life Goes On

Dealing with these big health issues has made me recognize the value of the little everyday things.

Shortly after diagnoses, I would get absolutely indignant when the phone bill would arrive in my mail box. Didn't they get the memo that I have terminal heart failure. I have no time for this unimportant day-to-day business? Don’t they understand that I have much more important, life altering, philosophical matters to attend to?

The next day the water bill would come.

Regardless of my circumstances the relentless flow of life continues, the grass/weeds still need mowing, dishes have to be washed, the floors need mopping and Progress Energy is serious about their “cut-off” date.

It is a humbling experience.

Life does indeed go on, and most of it happens in these everyday things.

Happy Birthday my heart, we have a lot of everyday things to do today.

Thursday, April 14, 2011

I feel like cr-@#p!

The one insidious understated, overlooked symptom of heart failure is this overwhelming crappy feeling. The one where I feel like a swollen slug that just wants to crawl under some wet leaf and sleep. And sleep. And sleep. And sleep. Trouble is, when I am in these funks, no matter how much I sleep (and I can sleep until my jammies feel like they are permanently stuck to my skin) I just can’t seem to get enough. I wake up just long enough to take a bite of something already partially eaten, sip some warm tableside iced tea, wriggle my toes to get some blood flow reestablished and go right back to sleep.

I am learning to accept feeling like crap. But when I add this crap to the already top-heavy pile of psychological baggage this disease has created my life begins to resemble the teetering back of the Clampett’s truck on the way to Beverly Hills.

So, I’ll be the one in the rocking chair perched on top of that heap… sleeping.

Saturday, April 9, 2011

So, for my next trick…I will have a little rant!

I have had a marvelous week, feeling better than I have in months. So, for my next trick…I will have a little rant!

After a year (and then some)of blogging on the subject of heart failure I sometimes wonder what more can be said? Then again, perhaps there is much that needs to be said, but publicly, and by other more qualified individuals than I. Perhaps the Surgeon General or the President of the United States…or maybe our new (cough-cough) Governor Scott should step up.

Make no mistake, when it comes to finding a cure for heart failure, its all about money and politics. Plenty of time and money is spent on fancy machines to diagnose, because that is how they generate money, but our money is reinvested in bigger hospital buildings and more fancy sophisticated tests!

Money will make the difference in the end; money will fund the research that finds cures. But you cannot get money as long as there is apathy. And you can’t eradicate apathy without generating interest. So perhaps that brings me back to square one…now that I have a few good days I think I will make some noise.

I am truly grateful for all of you that continue to send me encouragement and kindness. I am so much better for it, especially in my head, my heart and my soul. I am better because of my awesome family and creative friends, not the tests and the medical industry!

So, please take good care of yourselves and love each other. Be mindful of your own bright future and the life you make; and be wary of charlatans and ignorance that would have you live in the dark.

Make some noise!
Demand the best of your politicians, doctors and yourselves