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

Friday, May 30, 2014

Complicated life

Some find it so easy, they follow all of the rules, make plenty of money, have perfect bodies, pets, children, and front yards. I often wonder why it has always been so hard for me.  I thought I wanted all of these things, always felt like a huge failure because I just could not seem to attain them.  The reality is if I  had wanted them bad enough I have no doubt I could have produced them.  The question has always been why did I not want what everyone else wants? If I did not want these things then what do I want? My life is full, some is good, some is bad. Some is complicated, some  parts very simple.  Some parts people would understand, other parts they would not.  Some of my life is an open book others I keep well hidden.  This is the life I know…

              " Life I know"      Inda Arie

Tuesday, May 27, 2014

Embezzlers

Heart failure and pills…what they do not tell you, is that these pills will never make you feel better. I always thought that was the purpose of medicine. All they do is “slow down” the progress of the heart failure while compromising the quality of life now.
They embezzle life!
I am in a different position now. Now the pills.... we hope will stave off a surgical procedure to fix a valve, and the question is….would that procedure do more damage than good. So I take the pills, I struggle with incredible tiredness.  I wonder if I am doing the right thing or am I giving into traditional medical intervention out of fear? Are these latest pills life embezzlers or my salvation?
Trying so hard to see this latest round of medical intervention from a new, positive, hopeful, optimistic light.

"Jagged Little Pill" (you live, you learn)  Alanis Morrisette

I am certain you are tired of reading about my complaints, but if I complain here then I get it out, and no one else has to listen to me whine and grumble. Believe me....no one wants to hear what this feels like.

Saturday, May 24, 2014

just breathe....

Sometimes, it is hard not to want to jump ahead.
I feel like this is a giant chess game....
If I do this, perhaps it will solve this, but if it does not....Then we will do that....
And if that doesn't work well then we will talk about it later
Sometimes, I want to know what the "later" is right now!
I need to plan, prepare, get ready, get everyone else ready.
Then I realize...
I am screwing up my now..
Right NOW, I just need to live, smile, love!
Just keep breathing....

"Keep Breathing"   Ingrid Michealson        

Wednesday, May 21, 2014

Superhero

"Take off your mask, put down your guard
Don’t need a symbol on your chest
It’s all right for once to play
The damsel in distress
You’re gonna use up all your strength
Trying to be so strong
Don’t have to shoulder all the weight
Together we can take it on"
      
                       "Superhero"  Ross Lynch
...when the only person you have ever been able to rely on is yourself, when I have been my own superhero for such a very long time, it is hard to recognize and accept help.  I am trying, I am trying, I do not like being weak, and I just do not know how to accept help.  I have always been my own superhero! 

Tuesday, May 20, 2014

Shaking the Tree



I love the idea of "shaking the tree"!  It implies all of the answers, all of the materials, everything I need is already here and available to me.  All I have to do is have the courage to look for the right tree and shake loose everything I need.  I am learning that I have to trust everything I need is already here.


       "Shaking the Tree"    Peter Gabriel

Monday, May 19, 2014

Miracles


Maybe the miracle is my life, my art, my love and I am just expecting too much....
Maybe I need to spend more time rejoicing in all that I have.
Maybe I should be chasing the life that I have control of rather than the cures that someone else controls. Control that I have to schedule, and pay for.
Is that how healing really happens?
I do not recall a single miracle that required an appointment or a co-pay.  Am I looking in the wrong place for healing?
Where is my Fairy Godmother?  I need you now!


"Iris"  The Goo-Goo Dolls
"And I don't want the world to see me, 'Cause I don't think that they'd understand
When everything's made to be broken, I just want you to know who I am"

Sunday, May 18, 2014

Dirty window...unwritten...

Licked my wounds...Paying attention...Coming at this from a new perspective...
I am fighting backin....In my own way!
                                            
                                                "Dirty Window" 2013





















Saturday, May 17, 2014

Heal Yourself.....

Learning that I may be able to be strong and accept help.  They may not be exclusive situations, although I can freely admit I am not sure I can do it...Just saying I am beginning to to see it.  I have always seen needing help as a weakness. The only way to get around it was to pay people to help.  That was acceptable. Some how...if you had the resources to pay for help, you kind of got a get out "weakness" free card. That option has never really been available to me.
If I am going to lead the life I imagined....I might need help...  Maybe time to heal myself...by healing my thinking.


"Heal Yourself"   Ruthie Foster

Friday, May 16, 2014

I suspect...




I suspect the "hard" part is beginning.
I suspect fear will be the hardest part, not what my heart is or is not doing.
I want to be present, I want to know, I want to feel it all.
The good as well as the bad...I suspect there is going to be a lot of cookies!
As long as I am not having to eat cookies by myself, I suspect I am going to be just fine.


"Dust to Dust"  The Civil Wars

Yesterday the latest test results show my EF is down to 25-30, and a heart valve is failing.  New round of ass kicking drugs, then more tests, then a possible discussion (I am not thinking this is a good idea, but will listen) about surgical repair of the valve.

Wednesday, May 14, 2014

I am on a journey...

and oh boy....I would give my right elbow to just have the tiniest clue of just what my destination will be. I preach regularly about living in the NOW and I know all of the cliches' about it is not the destination but the journey, and yes...I get that. But please know that I think there must be a destination in the picture before the journey can have meaning. And although I do not want to over emphasize the destination or minimize the importance of living in the NOW, I am becoming keenly aware of how important it is to have some kind of destination or goal.  My recent work with "The Desire Map" by Danielle LaPorte has been extremely helpful in melding future goals and living fully in the NOW but I am still struggling with the concept.  I intellectually understand it, the frustration presents itself in applying it to my life.
Passionate, Connected, Excited, Fearless

                                                                         "Distance"  Christina Perri

Monday, May 12, 2014

Get Out of My Way!

What a great night! I loved it….every minute of it! When the beginning of the week started so incredibly horrible there just are no words that can explain how amazing it was to finish it up on such a spectacular note.

They radiate, illuminate and insert then tell me it is time to think about how I live my life. I only know how to live one way and until I cannot do it, that is how it will be done.

Wish they had been there Saturday night!

I just want to tell them to get the hell out of my way!


"Get Out of my Way"  Ruthie Foster

Wednesday, May 7, 2014

Bangin' my head...

Another head banging medical experience and I
believe I really have accepted the fact that I have a part in the responsibility of carrying on a meaningful and beneficial dialog with the medical industry.  Unfortunately I am walking away with another extremely expensive experience filled with frustration, lack of communication and I am not certain when it is all said and done at the expense of my physical body and absolutely positive that my emotional heart has taken another beating.
I do not know how to fix this, but I am clear that this is part of why I am here.
                                                                   "ooh child"  Beth Orton

Sunday, May 4, 2014

So….I am going with the goofy pants!

Several months ago, my best, dearest friend in the whole wide world and I were shopping, which is a dangerous situation in itself and I need to mention that she is every bit as wicked and sadistic as I am.

This goofy pair of yellow, red and blue paisley flowered leggings were hanging on the rack (and the clearance rack at that) when she snatched them up, waved them in the air like she was surrendering to the enemy and hollers across the store "these look just like you". It was one of those ridiculous moments that for reasons I cannot begin to explain we both broke in to an uncontrollable case of the silly giggles, the kind where you laugh so hard your cheeks ache, your sides hurt and all but wet your pants in the middle of the store.

How could I NOT buy a pair of marked-down $12.99 leggings that created so much laughing, not to mention a puddle in the store.

Buying them was one thing, wearing them is another thing all together!

I am now thinking….these are excellent
Celebration of Creativity” (art opening) party pants!
Woo-Hoo!  Look out for puddles!


"Happy"   Pharrell Williams

Saturday, May 3, 2014

Brave

I want to be brave, but my heart and my life need a little help, I am scared and I hate asking.

I need a partner that will help me create the best most amazing life I am capable of having (instead of a long disease).  I do not need someone telling me what I should not do or lessons on how to modify my activities.  I do not need someone that focuses on the negativity of my physical heart by medicating the life out of me now!   I need a doctor that is my partner, that will champion my emotional heart, that encourages my creative heart that appreciates my amazing heart.  The heart that loves, plays, appreciates, and celebrates life.

I need a life partner not a death doctor.

"Brave"  Sara Bareilles
"You can be amazing, You can turn a phrase into a weapon or a drug
You can be the outcast, Or be the backlash of somebody’s lack of love, Or you can start speaking up
Nothing’s gonna hurt you the way that words do, When they settle ‘neath your skin
Kept on the inside and no sunlight, Sometimes a shadow wins, 
But I wonder what would happen if you? Say what you wanna say, And let the words fall out"
~Sara Bareilles

Friday, May 2, 2014

Installing a Celebration of Creativity! Finding the Light, Leesburg 2014

This group is an absolute blast!  
They are relaxed, supportive, extremely creative and oh boy, do they know how to play!
"Art lives in paradox, Serious art is born from serious play"~Julia Cameron

Thursday, May 1, 2014

Trust the truth

There are times I am certain my heart knows  long before my head is willing to see the truth.  There are other times the exact opposite is true and I am just as certain that my head will see the truth first, long before my heart is willing to accept it.
The one thing both of these scenarios have in common is that when the truth is difficult, I am gifted at ignoring it. I am skilled at not trusting myself.
When it comes to ugly truths, I can hide them, cover them up, pretend it is not happening, lie to others, and myself. I am learning to recognize how and when I do this, but it is always after the fact.
Will I ever be able to see the truth before it creates so much pain?
Will I ever allow myself to trust the truth or is the suspension of truth part of what makes me an artist? (or human?)


"Galileo"  Indigo Girls