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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Thursday, April 30, 2015

....must be lived and not told about.


They say “Lived to tell about it, But I say... CHEERS to the things that must be lived and not told about."

Some things in life…. that we want to last forever, just cannot.  Not because I chose it to be like that, it is just the way it is.  My only choice at this point is to mourn the loss like a death or celebrate the memories of the experience like a once in a life time vacation.   They are spectacular once in a lifetime memories that I anticipated and enjoyed.  They had a beginning (departure) and an end (return)  and I am a better person for having experienced it.   The only difference is these memories can only be lived and never told about.  SHHHHH and CHEERS!

                    "All We Are"  Matt Nathanson

Tuesday, April 28, 2015

Its the WHO




The “whos” drift in and out, but the ones that are supposed to be there are always in my heart.  Every day I am opening my heart to let it all in.  Yes, I know, I know I might be walking right into some real heart aches hurt and pain, but what if I am not.  Every experience good or bad has something to teach me.  It is not the what  it is the who….everyday.


"Everyday"  Dave Matthews Band

Sunday, April 26, 2015

Reach into the Darkness



If there is one thing I could share with the world, if there is one thing I wish I would be remembered for….This would be it!  This is the most amazing, fulfilling life purpose I could ever imagine! 


"Family of Strangers"  Ann Reed

Saturday, April 25, 2015

This is the Beginning.....

I get to start over, I now have a plan, all of the wandering, waiting, fear of making the wrong decision is over and it really is a new beginning! I have officially, with my doctors consent and blessing, discontinued the testing for cardiac viability and heart transplant. I will soon have an ICD (internal cardiac defiblirator) implanted. In everything I have ever read about this kind of long term disease there has never been anything said about this kind lack of dread…or maybe they did and I just could not recognize it.  Maybe this is acceptance, that illusive final stage!  Maybe I could not get that wonderful last step of Kubler-Ross until the doctors acknowledged that I was dying.  Maybe there had to be some kind of official acknowledgment before I would allow myself to get to acceptance.  Whatever the reason,  there has been a completely unexpected feeling of happiness.  Now we (me and my doctors) have a plan, now I can move forward, and do anything I want….No more standing still, no more waiting….only living!  This is a beautiful new beginning!

"Hold on-I'm Coming"  Sam & Dave

Friday, April 24, 2015

I Just Want to Celebrate.....




Amazingly, a day that I have worried about and dreaded for a long long time, has come and gone and there seems to a great deal of relief to have faced my biggest “demon” made a big decision and now have the freedom to pursue the biggest and best life I can have.  It is a beautiful bright sun shining day, today. Even the universe is saying YES….it was a good decision, move forward, celebrate, live!


"I Just Want to Celebrate"  Rare Earth

Wednesday, April 22, 2015

Meanwhile....

Thursday approaches, the day that I suspect I will receive the definitive information about what my options are.  Options, treatments, instructions (whatever I want to call them) I can hardly say the words revascularization,  LVAD and transplant.  For the past year she has constantly thrown out options that require surgical interventions.  These new options are preceded by valve replacement and an ICD implant that never came to fruition with no explanation why.  Is this time any different?  Are the words used to scare me into submission?  Am I caught up in the broken medical industry that has greedily turned its sights on me as a stream of income instead of a living feeling breathing person with a beginning and an end?  Meanwhile the world goes on. 

 
"Wild Geese" written and read by Mary Oliver

Monday, April 20, 2015

Courage....I need a little more




It does indeed take courage!  Courage to think for yourself when everyone thinks  you are doing it wrong.  More courage to dare to open your mouth and speak for yourself and even more courage to stand by your convictions ……or admit you were wrong.  It just takes courage…all of the time.

           "Better Off Now"  Trent Dabbs

Saturday, April 18, 2015

61 is Prime!



Happy birthday to me….I turned 61 this week.  So far, I have absolutely nothing good to say about 61 and sincerely hope that is just taking a while to build up some energy before the really cool stuff arrives.  But make no mistake… I know 61 will be spectacular; it is after all a PRIME number!  No one can divide my joy, my love, my life.


"Shaking the Tree"  Peter Gabriel

Wednesday, April 15, 2015

Pass the Cookies....

Accepting what is happening to the fullest extent and choosing  not to let it take over my finances, love, laughter and my life is not denial…it is making choices.  It might not be a choice everyone understands but I chose grace and gratitude over fear, and yes I am scared shitless, pass the cookies!

"You Get What You Give"  New Radicals

First we run, and then we laugh 'til we cry
You've got the music in you, Don't let go
You've got the music in you. One dance left
This world is gonna pull through. Don't give up
You've got a reason to live. Can't forget
We only get what we give

Monday, April 13, 2015

I Saw it Coming...

Elisabeth K├╝bler-Ross’s 5 stages of loss theory,  explains how one moves from denial to rage through bargaining to depression and the eventual bliss of acceptance.  This theory hasn’t gone smoothly in my case. I get through the first 4 stages quite nicely. But when I get bogged down in depression, I have found that the best antidote is a good dose of denial.  Although this works magnificently it also short circuits the entire process and I never make it to acceptance.   I am the queen of denial, I am good at it, and years of practice have made me an expert!   I have spent a life time burning the candle at both ends and enjoyed the light it gave off.  I pushed too hard, ignored too much pain, pretended too long and for precisely those reasons, I just cannot see myself whining about how this is all so unfair.  I have been taunting this situation for years and now that I am succumbing to something so predictable and ordinary, it bores even me.  However, I am frustrated by the sense of waste. I had great plans!  I’ve sacrificed and worked hard enough to earn them.  Now, I see this kind of thinking for what it is: sentimentality and self-pity. I excel at both.  But neither serves me at this point.  Last week’s heart cath results sucked, but I saw it coming….

"Heal Yourself"  Ruthie Foster

That's the Point


"Make it Mine"  Jason Mraz

Sunday, April 12, 2015

Feel What I am Thinking....



Desperately chasing and frantically letting go at the same time.  I recognize that neither of these activities are good for me.   Some how, some way, I have got to figure out how to do this on my own, that is the way it always has and always will be done.  I just have to figure it out....stay tuned!

"Give Me Love"  Ed Sheeran

Friday, April 10, 2015

Walking away from the train wreck...

Today I feel like I am walking away from a train wreck.  Saw it coming, knew it was going to happen, and I should have been totally ready for the impact…but I was not.

Yesterday was heart cath day, This is just one of have had several I have had over the years.  They are explosively invasive tests that literally make a small incision in the femoral artery and run a wire directly into my heart.  I hate these things; there is absolutely nothing that makes me feel more vulnerable than this test where I am required to bare my crotch and my heart to complete strangers.   The test went well, but the results sucked.  I have known for 5 years that I have heart failure, I have known since the beginning that it is terminal, I have known for the past few weeks that things are changing and now I understand why.  The train wreck has happened, I just have to get up off the ground, brush myself off, gather up my courage and keep walking away from it......keep moving forward.
"All About Your Heart"  Mindy Gledhill

Wednesday, April 8, 2015

I'll Know what I know

...tomorrow is Cardiac Cath day....it has been 5 years since the last one, mostly because I have begged, pleaded, promised to be good, offered my first born son and in general have done all I know to get out of them. Time to put on the big girl panties and see the truth. Good or bad it is time for me to know and that means a dose of REAL....Oh crap...who am I fooling...heart failure has no good....it is a slow "one way" march,  never cured and no such thing as remission.  Tomorrow is a real dose about how far, how long and how much and making the most of that info and life.
"I'm not aware of too many things
I know what I know, if you know what I mean"
"Shove me in the shallow water, before I get to deep!"


"What I am"  Edie Brickell

Never too late....


It is time to not honor the conflict, but begin to look at and appreciate the lessons I am learning.  I do not think there will be a glorious triumph, but I am learning more about who I am, what I want and how I have gone about filling my heart.  I cannot find or judge me through someone else’s ability to see my value.  I have spent my life doing that, and I suspect it is killing me.  It is time for me to name the real conflict
and begin looking for me.  It’s never too late…
"Never too Late"  Micheal Franti

Tuesday, April 7, 2015

PLOT TWIST



I am hollering "PLOT TWIST"! And I hoping this is the last time!  If there is anyone or anything else in my life that has any inclination of screwing up, falling apart, or in general “failing”….NOW…is the time!  So many things have gone down the toilet this week that I have decided to just call in all of the shit...so I only have to flush once.....it will hurt really bad just once... then I can begin to heal and move on!


"Big Girls Don't Cry"  Fergie
I hope you know, I hope you know, That this has nothing to do with you...It's personal, myself and I, We've got some straightenin' out to do

Monday, April 6, 2015

The Magic....

I preach to myself ….”NO Expectations” hoping it will keep so much pain and hurt away.  Am I just protecting myself?  The reality is I would like to have expectations honored and met, but in real life it is not reasonable.  I think my magic is in NOT needing.

"Song for a Friend" Jason Mraz