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, December 8, 2016

Letting go of the angst and worry!

You would think after all of this time….this is a concept that would be a part of every one of my decisions, and sadly it is not.  However, every single time I make a difficult decision, that often goes against the grain of what is “normal” or what others feel is not the right decision, I am rewarded almost immediately with this  wonderful ah-ha!  When all of the angst and worry is gone, it leaves this huge empty space in my heart and joy just rushes right in!  It is the most amazing thing!  Now, if I can only remember this for next time so that awful angst and worry does not hang around so long!
"Shine One"  Eric Bibb

Wednesday, December 7, 2016

Dancing and taking my power back!

Taking my power back....without permission!!! Well that is not entirely true…seemed like I needed about 42 other people’s permission, well that is not entirely  true either…but it sure did feel like it!  There was a late afternoon call from my regular docs office asking if I could come in as see them the next morning….I know….I know….when is the last time that happened….NEVER!  I figured if ever there was a sign from the Universe….this was it…I mean a doctor calling me for an appointment!  To make a long story short they are working with hospice to provide palliative care for me.  My heart has been singing, there have been tears of joy and I feel like for the first time in years, that I am being heard, that what I want matters, I finally have some control of my life….OMG it feels so good to take back my power over this disease, this heart, my life!  I am thrilled, there could be no better x-mas gift!  And I am happy dancing!!  Yes!
"Pata-Pata" Miriam Makeba

Tuesday, December 6, 2016

I am just starting over.....

I am not giving up, I am living!  Today was the day I have been hoping for, wishing for, begging the Universe for!  Today is the day I officially stepped off of the curative-care medical merry-go-round and can finally, finally begin living the best life I can.  No more PET scans, heart caths, echo-cardiograms, stress tests, surgeries, defibrillators, hospitals, cardiologists or endless insurance/doctor billing nightmares.  Today I officially begin palliative care!  Not yet hospice, (got way too much to do before I start that) although this palliative care will fold into it seamlessly when it is time.  Today (well technically Jan.1, 2017) I begin living my amazing life from the place where I can quit emotionally, physically and financially chasing the ridiculous na├»ve goal of curing heart failure.  Today is the day I get to begin living the best life possible with the medical (medicine) help I need!  NOW I stop wasting my energy, my time and my money on the manic struggle of curing the incurable and begin spending all I have, every single bit of it…. on living…playing…loving…and creating!  Today the rest of my amazing wonderful life begins!  I am not giving up….I am starting over with a new goal of having the most remarkable life I can possibly have!
"There She Goes" OrtoPilot

The hardest lessons....



It is the hardest damn lesson! And here is the really wicked part, I do manage to figure it out and I work like a driven woman to find the strength to let it go. Then in a weak moment or when I am not paying attention or just for the hell of it those lousy bits of guilt, anger, love, loss and betrayal will sneak right back into my life! And…the fight starts all over again, I do not think it will ever end!


"Dust to Dust"  The Civil Wars

Monday, December 5, 2016

The book is off to the publisher, a collection of some of the 2016 posts!

The book is off to the publisher, a collection of some of the 2016 posts. You can flip through it with this link and if you want one it can be ordered from that same link!

Sunday, December 4, 2016

Doing it again!

…and I am going to do it again! I know both sides of the coin now!  I know how the absolute worst  that can happen feels and it sucks a big one!  I am not making light of it, but I survived, I am stronger, and I have learned.  This is what I know…. the smiles the giggles and the joy of laughing are worth the risk!  Nothing great in my life has ever been “risk free” but it has always been worth it!  Smiling, giggling and laughing!

"For Good" Idina Menzel

Friday, December 2, 2016

well-earned advice....


Never have fit in and always felt like there must be something wrong with me!  But maybe, I was not weird or damaged; it was just how they wanted me to feel because I did not agree with them.

My other well-earned advice...It is time for me to surround myself with people that uphold, celebrate and share my uniqueness.

I just want to smile, live and love with every with every tid-bit of energy I have.

"Bubbly" Colbie Calliet

Wednesday, November 30, 2016

“effing” pile of pills


I know…I know….this was NOT the assignment!  But it is what happened…And the fact of the matter I thought if I am going to put my wishes into the universe…my real wishes would not be this “effing” pile of pills…it would be NO pills, no docs, no insurance companies….What I want to send into the universe and pull towards me, is not more of the crap I hate, but more of what I love.  Laughing, playing, creating, dancing, friends, family, wonderful new experiences, art, creativity…..there are a thousand more things I would rather have than this mess of meds!
"Closer to Fine"  Indigo Girls

Tuesday, November 29, 2016

I almost kicked the cat!

And just about the time I was so frustrated and ready to kick the cat….everything changed!  

There are still a bazillion unanswered questions,doctors, relationships, and life but I was just reminded that maybe it is just time to let go of everything that happened in the past and start fresh with what I have and what I know now. Perhaps it really is time to celebrate, dance, smile,  in the now….I cannot undo the past and I have no control of the future after all it is only the “now” and how I feel,  that I have any control over!  ....and that is just wonderfully fine with me!  PS....the cat is safe!

"I'm a Woman"  Koko Taylor

Monday, November 28, 2016

Unlearning....

….it is not difficult to see my grown children repeat the past. I was raised in a generation that women were expected to find all of their joy in producing and caring for children, husbands and home.  If you wanted to work (or God forbid….had too) there would be no help from husbands, physical or emotional.  Our parents came from the same warped set of values....we repeated it. Now, I clearly see the next generation doing the same, setting them up for inevitable failure. Unable to acknowledge how much damage living a life according to other people’s expectation created, the problem goes on unrecognized, and no steps are taken to repair the emotional damage, the misery and the hurt moves from generation to generation.

It has taken years for me to recognize that I did not need to feel guilty for not being the same kind of “good mother” or how difficult it was to parent the way everyone else did. But I did, And when I see them repeat the same behaviors… that I was afraid to speak up for myself for fear I would lose their love, I realize how much of a failure I was….and for that I am sorry.
"Reflections" Diana Ross

Saturday, November 26, 2016

What happened to Thanksgiving????



I went out last night….I know….I know it does not happen that often, but every now and again I will venture out ….daylight savings time is over, the time has changed, it was dark and the first thing I noticed is that at least one house per block (and sometimes more) already had their outdoor Christmas lights up.

Then….because I could, 
I peeked in windows as we passed by, 
more already had their trees up... WHAT????….REALLY????? 
Did I miss Thanksgiving?


"Bottle of Wine"  Fireballs

Our First Teenager.....grandson!

It is our first teenage grandson (and his new glasses)….Holy CRAP!  How did this happen???

Cupcake trees, with purple and green glow in the dark icing…booty for the B-day boys (his dad’s B-day was 2 days before) and booty for all of the boys….We will be packing it all up and heading for Gainesville this afternoon.  Woo-Hoo!

"Birthday"  The Beatles

We all live for....

Laughing….it is what we all need a whole lot more of!  Between the election, the frightening cabinet/staff appointments, the pipe line protests, Monsanto, Trump, PET scans, road construction with their chronic traffic snarls and to make it even more frustrating and aggravating…..the holidays are here (AUGHHH!!!!) with treacherous large family gatherings and heinous company parties!   There is a good chance that none of these things will kill you…but sometimes when I am in the thick of those monstrous moments…I have my doubts!

All of it is aggravating, all of us will probably go through it or something very similar and in the end….none of us get out of it alive.  So, as I (and all of us) face down some really big ugly life altering decisions, I need to remind myself (and you) to just love and laugh...again!  I will continue to make the best decision I know how to make, then I am going to just let them go and spend the rest of this amazing.....life loving and laughing! 

We might as well love and laugh, love and laugh long and hard…until our belly hurts…..they are after all, the times we all live for!
"Let it Go"  Michael Franti