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!"


.

.

Tuesday, June 30, 2015

Passionate, Connected, Excited, Fearless

A couple of years ago I went through Danielle LaPorte's Desire Mapping class with friends and loved it.  And like so many other things that excite us, after a while they become common, and before I knew it, I had dropped the practice of desire mapping altogether. I need it back, I need the clarity it brings!  A new Desire journal and I begin tomorrow, July  first.  I have some big ass decisions to make coming up very soon.  Decisions whose facts will be presented to me only by those that have nothing to loose and specific financial gains to be made.  I need to be able to be extremely clear and precise in my listening and  decision making skills!  I hope this helps.  It did once before!

"Don't Let Me be Misunderstood"  The Animals

Monday, June 29, 2015

Clearly....






Clearly, I have not read the notes on this....and maybe just as well...What you get here is pretty raw, this is the way it is. I do not mean to offend, but it is how I feel.



"Where Are You Going"  Dave Matthews Band

No Religion, Only Love...


I accepted Christianity as a child and as a young adult not out of belief or faith, but out of expectation.  It was what was expected of me.  Over the years there has been a litany of bad experiences and for me, Christianity became my official “you are not good enough” authority. I quietly released all of the negative damaging feelings it created and for years have lived my life doing the best I can, to love and do no harm to anyone.  It has been just that simple.  I never questioned, condemned or belittled those that have their faith and receive comfort from their religion.  So, I was completely hurt and surprised when my affirmation of love for the US Supreme court ruling allowing legal rights of gay marriage in all 50 states was met on line by vile hateful words full of judgement from a friend that was a pastor. I have sent him love wished him well, and removed him from my friend list. 
No more Jesus, God, Heaven, Hell, Satan or Bible...... only love.
"Imagine"  John Lennon

Saturday, June 27, 2015

Love Wins!

This is the oldest thing on my bucket list.  I had the profound and amazing opportunity to officiate a commitment ceremony in a huge sculpture garden on a mountain in Vermont many years ago and it was one of the most loving profound experiences of my life.  It prompted a sincere desire for this to happen!  Thank you US Supreme Court!
"There is a Mountain" Donovan

Inspired!


Got my butt up and out of the house, and not to a damn doctor’s appointment, the pharmacy,  the gym, or the grocery store, etc. etc. etc.  But out and over to see some amazing creative friends that I have missed dearly.  Up a flight of stairs….(a one nitro trip), several glasses of wine, laughing, hours of raging, unforgivable, but oh so much fun gossip and I really do think I can do the impossible!  Forgive me, for being afraid to let you see my fear and failures,  for last night and ahead of time for all of the mistakes I am going to make in the future as I wade hip deep through this part of my life.  I know now that I am going to be making a whole bunch more mammoth mistakes as I do the impossible,  Thanks guys,  I so need this!  You always inspire me!


"Nobody Ever Told You"  Carrie Underwood

Thursday, June 25, 2015

everyday...








This pretty much says it all, except I changed TODAY to everyday….EVERYDAY…because the moment you take a day off, these wonderful feelings begin to fade, and they fade so fast.

"Everyday"   Dave Matthews Band

Wednesday, June 24, 2015

Letting go & gratitude....already attracting wonderful things


Flagler Beach Summer 2014  
My perfect “happy place” studio apartment on Flagler Beach was rented for my week with the kids and grands….I had to take a one bedroom at a higher price, for fewer days to make it work in my budget. BOOOOOO!
AND THEN….marvelous wonderful Peggy (that manages this magical little place, an old 60's style "motor court" that has been lovingly restored and updated with new appliances with wonderful splashes of local art) called me. She remembered me from past years, there had been a studio apartment cancellation, so guess who gets to stay the whole week for the same price?…..WOO-HOO! Great amounts of gratitude to the universe that has responded so quickly and positively to me moving forward with my life,... and angels like Peggy!
 
"Odds Are"  Bare Naked Ladies"

Climbing in the Front Seat......


Holy Crap! SYNCHRONICITY! 
I flipped the calendar page on my refrigerator to write down another doctor appointment and this is the page.

Totally appropriate…..before I have even seen this surgeon, we do not even know if this is possible yet, but their office called the insurance company to confirm coverage and the insurance company is already throwing a “flag on the play” with a litany of reasons why this procedure is outside the realm of normal and typical medical treatment. Well…DUH! I was totally polite; in the face of total absurdity (you would have been proud). I did however have a world class melt down after I hung up, then realized, I just let somebody I do not even know have that much control over my life.
The only thing I get to control is how I feel about my own life. I am not letting them take that from me!

Some things maybe out of my hands, but I am in the front seat, I can always throw my hands in the air and enjoy the ride! I choose!
"It's Just a Ride"   Jem

Tuesday, June 23, 2015

What do I know for sure…

Not a damn thing! 
And that is the basic answer to everything!
I have learned that regardless of how much I think I know, it is never enough. So it is just time to quit worrying about it, and go have some fun.
Laugh, love, giggle, play, hug, dance enjoy....Woo-Hoo….it is time!


"Little Bit of Soul"  Music Explosion

Monday, June 22, 2015

Got my ticket for the next ride!

And…..it is kind of exciting on one hand and scary as hell on the other.  So I am trying very hard not to get invested in any outcomes….just going on the next ride. 

The PET scan showed I have some “hibernating” heart muscle.  Officially that is tissue that is actually alive, but not functioning. A new thoracic surgeon going to look at the possibility of artery and valve replacement in an effort to get more blood into my heart, and maybe, just maybe that hibernating tissue might begin working again.  I know, I know, now that I see it in writing, it really does seem rather far fetched.  I am trying very hard not to get  excited about the possibility, or HOPE,  but it is hard not to.  I know how this works I have been on this ride before.
"Hold on My Heart" Phil Collins

Sunday, June 21, 2015

F R I D A !!!


10 Lessons to Learn from Frida Kahlo!

I could write forever and 22 days, but I do not think I could ever explain things better!  You just have to love how she survived and thrived through her life!

After many years of admiration for Frida Kahlo, I can finally put on paper what this woman taught me:  by Elayne Youseff

Here Comes the Sun....

2014 Flagler Beach sunrise walks



Surviving a setback…. means I get to start again!  And today of all days seems like the perfect time to begin again!  No more chasing perfection, trying to fix what is broken, or struggling for normal. Now, I learn to live with and celebrate what I have!  And like the sun, I get to start new every day!


"Here Comes the Sun"  The Beatles

Saturday, June 20, 2015

There's no time for anything else!







I got tired, overwhelmed, beaten and let go of my bucket list....Time to get back on it!


"Catch a Falling Star" Neal & Leandra

Hope.... is nothing more than a roller coaster ride

My ups and downs recently have been wild and I wonder how much of my struggle and exhaustion are just the emotional roller coaster as opposed to my physical realities.
I have to get back on the ride again, but this time, to be quite honest, I think even they will agree, now….that we have hit the wall.  It is time to stop this wild and desperate ride, it is time to accept this reality and get down to the business of simple quality of life management. I did not ask for this, but when they told me there was something we could do….I found the strength courage (and cash) to go through it.  The reality is, I paid to have them cover their liability issues with my precious time, money and energy. They played the “hope card” and I willingly got on their ride, when deep down in my heart I knew what the outcome would be.  I need to listen to my own heart, Hope is the tool they use against me and it is a horrible thing. Hope is nothing more than a roller coaster ride and it is time for me to get off and start living my life again.

"If I Could Change the World" Eric Clapton
If I can reach the stars, Pull one down for you, Shine it on my heart
So you could see the truth: That this love I have inside is everything it seems.
But for now I find It's only in my dreams.
And if I can change the world, I will be the sunlight in your universe.
You would think my love was really something good, Baby if I could change the world.

Friday, June 19, 2015

My Wall

This is not the first, and not even the one hundred and first time I have made this mistake. I think mistake #34-B is more of a defense mechanism than a mistake, and it works for me because it  protects me so well. I build spectacular emotional walls and because it hurts others it becomes a mistake.  They think I am keeping them out because I do not love and trust.
I did not build my wall intentionally, but it protected my love and spirit so well that I kept building, I have built them for years. Inside my wall I am comfortable.  Inside my wall, I am in charge of my feelings.  Inside my wall I cannot be hurt.  Inside my wall, I get to decide who sees the parts of me that are broken. Inside my wall I can be scared shitless, angry as hell or frustrated beyond belief,  but on the outside my wall you will only see  the parts that are acceptable, strong, and healthy.  It is not a choice I consciously made, but I do now consciously recognize it.  It is the only way I know how to survive.  I admire those that can operate “wall-less” but I am not strong enough, I am too vulnerable to be without my walls.
Love me….love my wall.  I am too afraid to take the risk of taking down my wall…I am sorry, I just can’t.

"Perfect Girl"  Sarah McLachlan

Wednesday, June 17, 2015

Don't Let This Happen...

"Time of Your Life"  OrtoPilot


Please do not ask me to explain....









I always feel like I need to take some responsibility for how they feel…when in reality I cannot even figure out (or take responsibility for) how I feel.  Although I am trying like crazy to make some sense of this, none of it does.  I can’t explain it…..please do not ask me to explain it to you….

  "A Way With Your Words"  Imaginary Cities

Tuesday, June 16, 2015

Not ashamed, I don't know how....



I have always hated and never really understood how fear got attached to creativity.  “Uncertain outcome”! that is creativity.... Although I know that all my outcomes are still full of fear. It is figuring out how not to be ashamed and just deal with it that creates so much of my fear.

"Better Off Now"  Trent Dobbs

Saturday, June 13, 2015

It didn't work, I had a lot of wine!

I said going in on Thursday…That the worst that could happen, is that he would say “NO” your heart is not strong enough.  And, I would be no worse off than I am now.  The reality was, I really wanted to have the security an ICD would bring to my everyday life. 

After sitting in an exam room, alone for an hour and a half…..he said “no”! He said “no” while patting my hand, saying the PET scan has possibly detected some “hibernating” previously thought to be dead muscle tissue.  All I have to do is consider bypass, re-vascularize that tissue and then he will consider the ICD. (I have been turned down for by-pass…twice, my arteries were in too bad of shape to create a viable graft)  When I explained that to him, which is precisely why I was here, his response was, “I am just the electrophysiologist I only deal with the electrical part of your heart, go see about getting more blood to your heart, then come back to see me in October and we will talk about an ICD then.  REALLY…????... son of a bitch!

I was sent to him because I could not have by-pass and he is sending me back to the cardiologist to HAVE by-pass.....  What the shit!  And that explains an entire bottle of wine and a not so good day after….ooooosh.  Why do they build up my hopes, send me running after elusive "fixes"?   A bottle of wine was the only thing that made sense, because none of this other stuff does! 
"Gravity" Sarah Barielles

Thursday, June 11, 2015

The crown is on straight!




I need this today!  I do not like this electrophysiologist, I do not think he likes me either.  It is a draw!  As much as I want my doctors to care about me as a person, I am learning that just is not realistic in today’s world.  I am a paycheck, a billable hour, a means to an end…..nothing more.   If he is the one that ends up doing the surgery (which is highly likely) I will look at it, just like I am hiring an electrician.  As long as he does his job well, we do not have to like each other.  I do not give him any more of my power.  The crown is on straight and I make the choices from here on out!

                 "Respect"   Aretha Franklin

Wednesday, June 10, 2015

Creating and Healing

Tomorrow is the day...I hope...Tomorrow is the electrophysciologist appointment, and barring any more kinks we should be able to move forward.  Studio is getting organized for a summer of relaxed creating and healing!  I cannot wait to get the surgery over and the creativity started!
"Strength, Courage and Wisdom"  India Arie

You only get what you give!




and now...in the gym....strength training.  Push 2-3-4 Pull 2-3-4....I've got the magic in me, just got coax it out!


"You Get What You Give"  New Radicals

"Don't let go
I feel the music in you
Fly high
What's real can't die
You only get what you give
You're gonna get what you give
(don't give up)
Just don't be afraid to live"

Monday, June 8, 2015

Yep.....I am going!!!



Come hell or high water, doctors and whatever....I will be in Tampa, July 29th, drinking beer, singing and dancing! I go every year and this year will not be any different!


"Ants Marching"  Dave Matthews Band

I am on it!

After a long time….and I am way to embarrassed to say how long, I headed back to the gym this morning  (Planet Fitness) and I am holding them to this “judgment free” thing!  The new med cocktail and assorted other tweeks and I am feeling better than I have in a while, but with the new cocktail, also comes the heinous side effects. For me the trade off is...less pain, more energy but miserable debilitating depression. Exercise is the only thing that helps, (unless I want to do more meds...WRONG!) but OMG it is so hard to get started again. A week ago I began with walking, now adding strength training at the gym and I am feeling so much better.  I will be ready to sing through the ICD implant surgery and recovery! My best medicine is coaxing those elusive endorphins into my system with exercise and movement.  It is my best solution..I am on it!
"Morning Girl"   Neon Philharmonic          

And…I want it right now

And…I want it right now….Patience is not one of my strong suits!  I have spent a life time practicing the long honored tradition of  setting goals, planning , nose to the grind stone, working to achieve them, and sometimes, sometimes NOT reaching the goal.  I think it is time to let go of the long range plans and get into the now.  I want to feel good NOW…I want to love NOW…I want to play NOW…I want to celebrate my NOW by doing everything I love.
"Belly Belly Nice"  Dave Matthews Band

Saturday, June 6, 2015

If you don’t believe me…. Just Watch

Months of being unable to..... has been so damn frustrating!  But with the recent med changes and “nitro”on board 24/7 there has been a magnificent change in my ability to be more active without the pain.

I refused to give up this lovely decorative living room accessory and boy I am glad I did not! 

3 days "back on it"....and already those elusive endorphins, better than any drug you can buy legally or not, are kicking in and I am feeling so strong and positive! 

Now don’t get me wrong…. I am not going to set any treadmill records...
not this week anyway!
If you don’t believe me…. Just Watch!!!

"Uptown Funk" Mark Bronson feat. Bruno Mars

Friday, June 5, 2015

Just saying.....

"If you want to tell people the truth...make them laugh...otherwise they will kill you."
                                                                                                                              Oscar Wilde

Thursday, June 4, 2015

Primed and Wined and ready to paint!

The art center must have dug out these oldies but goodies for “in between” wall d├ęcor before the next exhibition is hung.  I remember the day we painted them, and I cannot help but laugh out loud!  What fun and wonderful memories they bring back!  One whole day, oodles of free paint, great creative friends, flowing wine, yards and yards and yards of canvas and a Jackson Pollock Abstract Expressionism video, we were primed, wined and ready to paint. It was a full day of no expectations, just canvas, paint and exuberant expression.  It was so much fun!


"I'm Free"  Soup Dragons

Wednesday, June 3, 2015

Do You Want to Dance?


I am the sensual one, but my grief is not buried in "sensual", it is hidden in “one".  As much as I do not want to do the hard days alone, the reality is there is no choice...I have to. Many people will help and support but still, I am going to feel alone.  The conundrum is unless you have lived in this desperation, you cannot understand or know how it feels. Even if they want to...it is not their time, they can not do THIS dance with me. It is another one of those facts of life that no one talks about.

But, I am going to keep doing the brave, openhearted, breathtaking, sensual happy dance! It is where my strength is.  Do you want to dance?
     "Do You Want to Dance"  Bette Midler

Deer in the Headlights!

Yes that is the official “deer in the headlights” look!
A last minute “holy crap”, the intended speaker did not show up, emergency, can you facilitate a last minute, seat of your pants break-out meeting discussion at the Lake County Arts & Culture Quarterly meeting PANIC!!
Unprepared, horribly overwhelmed and trying as hard as I can 
to pretend I am the well-seasoned organized professional.
I can see it screaming all over my face….. “NOT”!
"HELP" The Beatles

Tuesday, June 2, 2015

Even when NEXT.....


Even when NEXT is taking forever?

I get it…I understand…all in good time…blah….blah…blah, 
but I am so ready to get on with it, get it over with.  I am ready to not be wallowing in this self-pity and fear.  I want this over.

Patience is not your ability to wait…
It is how you act while you are waiting.

OOOOOOPS!

"Ooh Child"  Beth Orton

Monday, June 1, 2015

and...I do not allow them...

If I give away my power, I also give them the power to take it away from me.
I know you must think this is so hard hearted, but in reality it is the best way I know to survive.  If I am not depending on anyone, then for the most part no one can disappoint, frustrate, or impact my general happiness.  It all becomes my responsibility….If I do not depend on others, then I am called to be 100% responsible for my own happiness and no one can take that from me unless I allow them to….and I do not allow them.  

"Arms Around My Life"  Janis Ian