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...

Sunday, May 31, 2015

I have secrets

I always thought that, a great life was a life that was free, open and no secrets.  I have no idea where that came from….but it has always been a part of my thinking... but now, I do not think it is necessarily so. 

As I grow older, I am learning that not all secrets are bad things. There are parts of me that are the best and strongest when they are kept on my insides, not shared or exposed to the world for judgment, comment and scrutiny. My secrets are what make me, ME!  I do not need other people to agree with me, support me or understand me.  I hold on dearly to the feelings and the secrets that make my heart sing.  I am not ready to risk others not liking them.


"Secret"  Maroon 5

Saturday, May 30, 2015

My best and favorite part...



Heart failure does not make me feel sick like you may think “sick” is, most of the time nothing hurts.  If you are going to have a long terminal disease this is the Cadillac on the used car lot.  I do not want anyone to think heart failure is easy.  It is not…it sucks a big one.  Sometimes it is really hard. I struggle to appear normal, it sucks up my awesome energy, and that is my best and favorite part about me!

"Don't Stop till You Get Enough"  Micheal Jackson

Friday, May 29, 2015

"Is this the prize for learning how not to cry?"

Summoning up the brave today….  I believe all of the things I (we ) have to endure are in our lives for a reason.  We have lessons to learn!  With a bunch of new (or new for me) cardiac procedures, I think the lesson the universe wants me to learn is how to be really brave, I mean really really, kick ass brave.  I know I should say ...."move aside hurt and fear, you are in the the way"....But I want to say “REALLY” more of this??

"Doctor My Eyes"  Jackson Browne
"is this the prize for learning how not to cry?"

Thursday, May 28, 2015

These Incredible Artists!




Sometimes, it is not about how much you put in your pocket, but how much ‘they’ put into your life.  How lucky I am to have had the opportunity to have had these incredible artists in my life.  Thank you I am so grateful!

  "I Can See Clearly Now"  Johnny Nash




The end of every Artist's Way Class is a whirlwind of mixed emotions! Celebration at the completion of class gets rolled up in the realization that we have finished the class. The thought of not spending Wednesday evenings with these amazing creatives makes me sad, but I am incredibly, wonderfuly, grateful that everyone of you have come into my life....Thank you for going on this journey with me and thank you all so kindly for my gift. I have been truly deeply touched and count everyone of you as an amazing blessing....You all taught me so much!

Wednesday, May 27, 2015

"iT" works for me

This is one of those holy crap “I get it” statements.  However I always “get it” right AFTER I have done it!  What I really need is someone or something to convince me not to be scared BEFORE I do it!  I want to do so much more! And then….I suspect it mostly has to do with what “it” is! 
I want to experience everything but I often feel like I am scared of everything, so it is easy to understand why this quote is working for me!

"Honkey Tonk Women"  Rolling Stones

Tuesday, May 26, 2015

The butterfly is not here yet!




I am certain staying busy doing what I love has been the magic formula that has kept me going well past and much further than the doctors felt I should.  Of course nothing makes me happier than to prove them wrong!  This next stage is going to be a bit trickier.  I have to find the way to continue practicing radical creativity! The butterfly is not here yet!
    
              "Shaking the Tree"  Peter Gabriel

Monday, May 25, 2015

Strength in being seen....
















Yes, I am afraid of what is just beyond the ache,
Yes, I am afraid of being seen
....who and what I really am.

"All We Are"  Matt Nathanson

BE "?#(/!#&" BRAVE

And believe me….very few are going to encourage you being brave!

But hold your ground; most of them are NOT interested in what is good for you and your life.

They-NOT you,  prosper financially and emotionally when you give in and are who and what they want you to be.

"You're the Only Thing in Your Way" Cloud Cult

Sunday, May 24, 2015

Working on being notorious!

Rumi seems to know me.  I did not think I had intentionally done any of these things, but when I look at the list, it seems as though I have.  Well….everything but…. “live where I fear to live”.  From a strictly physical point of view, I have been in the same community and the same house for 38 years.  Not a special community, not an remarkable house, but the years of growing family, kind friends, celebrated successes and colossal failures have made it a comfortable place, a home, and I suspect “it” is what gives me the courage  to do all of the other things. But I need to really work a little harder on being notorious!


"Belly Belly Nice"  Dave Matthews Band

Saturday, May 23, 2015

and...I get away with it

I bid on and won my own hand painted kite at the Artist’s Way celebration of creativity silent auction.  I cannot wait to get to the beach and fly it. This will be putting my work into the world in a completely different way.  I cannot imagine the experience!  Flying a kite is already one of my favorite things, seeing my stripes, hearts and swirls in the sky will be crazy fun!  I love playing like this, (and so many other things) and I will take my grandsons with me, just so people think I am not quite as weird,
You all think I am just being a good Nana….
Hell NO…I am playing having so much fun!  The kids are my cover....and I get away with it!
"I just want to fly,
Put your arms around me baby, 
Spread your arms and fly"
                  "Fly"  Sugar Ray

Friday, May 22, 2015

Strength & energy hiding in the darkness



And the part of the story that is the hardest is being totally aware of what parts of myself are not working like they used to.  Frustration does not begin to describe the loss. The darkness it creates can be overwhelming.

And then....this made me realize that there could be a ton of strength and energy hiding in that emotional “darkness”  I need to let go of the fear of the dark, go in there and find the tenderness,the strength, the energy that is waiting for me.


"Here Comes the Sun"  The Beatles

Thursday, May 21, 2015

it's a mouthful...but so true...


Every once in a while it is so great to know that what I feel is not bat shit crazy!  "a study focusing on participants in a hands-on art workshop found that making art greatly improved their 'psychological resilience' — which helped them resist the effects of stress and actually made them feel happier — while increasing 'functional connectivity' between many areas of the brain. While fully engaged in the act of creation, the participants were able to reach a powerful mental and bodily state the study refers to as 'flow,' which engaged both cognitive and motor skills. Plus, another 2014 study revealed that the act of drawing actually helps develop gray matter density in the brain."



"Heal Yourself"  Ruthie Foster

Wednesday, May 20, 2015

Fair Warning!

There is such a fine line between expressing my feelings, saying what I feel needs to be said and hurting someone else’s feelings. Often, I say nothing out of fear or an attack of ignorance.  I am the one that comes up with the perfect intelligent response a half of an hour AFTER the conversation has ended.  I was raised on “If you cannot say something nice, do not say anything at all”,  “keep it locked up inside don't talk about it, talk about the weather” and “Better to be thought a fool than to open your mouth and remove all doubt”.

I have given up trying to figure this out! I think it would be wise for everyone to plan on my being inappropriate because I suspect I will be saying a lot more about how I feel!  FAIR WARNING!

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  "So Much to Say"  Dave Matthews Band

I am not good at communicating this kind of stuff and I do not have to do it over and over again and besides, I just plain hate doing it. So writing seems to be the easy way through it.

The past few months have been difficult. A recent series of tests have revealed both heart valves are weakening, the stent that was placed in that miraculous collateral artery that kept me alive several years ago has failed and that artery has collapsed just like the 2 other major arteries did years ago. My Ejection fraction (the amount of blood my heart can pump) has dropped to 20%, and EKG’s continue to degrade. After many tests and consultations confirming these conditions, I was offered the option of heart transplant and/or LVAD (left ventricular assist device) to prolong my life.

I have spent a good amount of time with my cardiologist these past few weeks, she is a wonderful young woman, specializing in women’s heart disease that has been taking care of me and my heart for over a year now and I like her very much. We have talked at length about recent test results and the pros and cons of my choices. I have with her blessing and agreement decided to discontinue the testing regiment that would establish cardiac viability and my placement on the transplant list. I have opted to not have a transplant. I have however elected to continue to enjoy the outrageously wonderful quality of life I now have, for as long as I can without risking an extremely dangerous surgery, organ rejection and possible damage to my already compromised kidneys from anti-rejection drugs. The waiting list is long and I am in the lowest percentage of heart recipients. Instead of compromising my extraordinary “now”, I have been recommended to have an ICD (Internal cardiac defibrillator) implanted in my chest which will automatically monitor and/or shock my heart when it needs it to prevent sudden cardiac death and give me the best opportunity to have a spectacular NOW! I am seeing an electrophysiologist (I know, what a mouthful) for more testing and to schedule that surgical procedure in the near future.

The rest of my cardiac support will be managed with medication. The new meds have already made an amazing and wonderful difference in pain management and my day to day quality of life. We will continue to manage and support symptoms and declining function as the situations arrive with new medicines.

I need each of you to understand how magnificent I truly am. I am not giving up! I am blessed with the fantastic opportunity of making intelligent well researched decisions about my own quality of life with wonderful medical support. I am in a very good and loving place spiritually and emotionally and I really do not need anything, but your happy loving thoughts! This is simply another part of the disease I have lived with for over 5 years, it is just getting a little harder now. I plan on continuing to teach when I can, create art, laugh, love and enjoy this amazing life for much longer!

Tuesday, May 19, 2015

Dancing in my underpants!

Van Door broken again….
dancing in my underpants.
Hospital blood tests…
dancing in my underpants.
Cardiologist today…
dancing in my underpants.

Blue sky-dear friend home from Mexico-another has a phone-closet is clean- unexpected visit from my son, pizza and and 50 cent beer tonight and I am incredibly HAPPY dancing in my underpants! Some times I forget to celebrate the good things, but what would
happen if I danced in my underpants through
the bad stuff, too????  Holy Crap, stand back!
"All Right Now"  Free

Sunday, May 17, 2015

Circles

Circles are unbroken infinite lines without beginning, end or direction, ancient symbols of eternal love.

My circles are endless and unmeasurable. I can attempt to measure the area or circumference of a circle by way of the arithmetic (rational) function Pi.  However Pi ( π ) will never produce a whole rational number, only an irrational number whose final decimal place can never be resolved. Regardless of how close I come to getting an exact measurement of a circle or my life, I can never fully resolve it.

My bracelets, unbroken circles without beginning or end are my constant reminder that I cannot resolve or understand the infinite.  Each circle has been given to me by my dear friend or family member. Every one of them is more dear to me than I can say and I never take any of them off.  
"You Have Lived"  Don McClean         

Simply Scrumptious Saturday

It has been such a long time since I have given myself permission to screw around.  Oh how I have missed it, and oh how I needed it!  And.... I am really good at it!

One of my favorite, comfortable, familiar places to do that is in Sanford on Saturday morning.  The farmers market, the second hand book store, the folk art gallery and lunch are a kick-butt party for my senses and my spirit.  It was a marvelous day, and guess what came home with me?  Tomorrow it begins again…the poking,  the doctors, the tests…the ugly medical shit that invades my world.

"Closer I am to Fine"  Indigo Girls

Friday, May 15, 2015

flap...flap...flap...














flap...flap...flap...flap...flap...flap...


"Blowing in the Wind"  Peter, Paul & Mary

Reaching...reaching...reaching for more...


Do you know how it feels to need to reach for or to grab on to something, but not know what that is?

Is wanting “more” part of the human condition that propels us to achieve our best selves or is it what keeps us from appreciating what we have and living in gratitude?

I want to love, dance, sing, travel, play and create make until I just cannot physically do it anymore.  Do not tell me it’s ok to slow down and rest because it is not ok!

Reaching….reaching…reaching for more!


"Someday"  Sugar Ray

Wednesday, May 13, 2015

Love Everyday



The easiest to say is the hardest to do.
All of the answers to all of the hardest questions can be found in love, and for some reason it is almost always the last place we will look.
Easy to say does not mean easy to do.
Love through the anger.
Love through the grief.
Love through the heartache.

"Everyday"  Dave Matthews Band

Tuesday, May 12, 2015

Flow Chart Mentality...Holy Crap!


Twice in the past couple of weeks I have had the unusual experience of  medical people using the phrase “You are on the left (or right) side of the flow chart”.  For you LEFT BRAINERS this may make perfect sense, but those of us with RIGHT BRAIN mentality it is confusing as hell!  When I was told we are working down the RIGHT side of the flow chart, I took it to mean RIGHT, GOOD, CORRECT, APPROPRIATE….then in a conversation with someone else, they mentioned they were working down the LEFT side of the flow chart and this was a great situation….WHAT?  I was confused, looked up a flow chart, and this is what I found….HOLY CRAP!  "What we have here is a failure to communicate"



"Be OK"  Ingrid Michaelson

Monday, May 11, 2015

Breaking Rules


The things I remember most are the things that I was advised (or just knew) I should not be doing. Too often going after what feels good means letting go of what others think is right.  But underneath a muffled giggle, I can say I have never regretted any rule that I intentionally broke, especially the ones that I did not get caught!

"Good Girl" Julian Moon

Where I am right now....



 I am learning that I cannot allow anyone else; including those I love to have any bearing on my decisions.  I cannot put my life or my own feelings of self-worth in the hands of those that cannot feel me, see me or understand how and why I feel. I am in love with my life and I am perfectly marvelously aware of and inspired by where I am right now.


"Bookends"  Simon & Garfunkle

Sunday, May 10, 2015

I can do this!


It (and by "it".... I mean everything!)
used to be so much easier, now it seems to take so much effort.

But I am here to say that I still can do this, I have not missed out on doing one single thing that I have really really wanted to do and that is the way I plan to keep on doing it!

I can do this!


"Beautiful"  Carol King

Art lies in paradox....

"Art lies in paradox, serious art is born from serious play."
Julia Cameron

It takes a whole lot of courage for emerging artists to expose themselves! "The Sky is the Limit" is The 2015 Leesburg Art Center Artist's exposing and celebrating their own creativity . This may look like an Art Exhibition.... but it is not.... it is a wonderful "Celebration of Creativity" and I am so excited and proud that I get to be a part of their art and their lives!

Friday, May 8, 2015

Just in case there is an “incident”....

Yes, I am grousing again! Waiting sucks!  Grrrr
And when the lack of patience is an issue….. this becomes a real problem.

Yes, I know that waiting builds character, patience is tantamount to virtue and patience is always revered and admired.  However, when it comes to doctors and tests and insurance I am flat ass out of patience!

I thought someone ought to know,  just in case there is an “incident”!

"Body Love Pt 1 & 2"    Mary Lambert

Wednesday, May 6, 2015

This is what gives me power and purpose








....this is what gives me power and purpose and all of the good things that most people, most especially the medical industry will never understand....clear the floor there will be art, wine, food music, and magnificent creatives sharing and hanging their work! It could not possibly get any better than this!


"She is not Afraid"  One Direction








Yes....What She Said!

Yes....What she said!  Joni Mitchell!
I am so incredibly blessed that I have the luxury of freedom...the amazing, incredible, outstanding freedom to create and be/feel so ALIVE!


"Higher Ground"  Stevie Wonder

It is the last time I will give away my power...


Most of my life, I have done “should” and “must”  without realizing I even had a choice to make.

Yesterday I made a choice for no other reason than the doctors said I should and I must.  I did what they wanted me to do, even though it is not what I wanted to do.  I hated  the choice, I hated myself for giving in!

It is the last time I will give away my power .   I will take responsibility for this choice, but I will not make another choice in my life based on what someone else says that I must or what I should do…My choices have to be about what gives my life meaning!


"From me to You"  Janis Ian

Tuesday, May 5, 2015

Just because....

Just because I need this one....
“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”  Maya Angelou


Monday, May 4, 2015

With Brave Wings....


And some days I have to accept that not everything is going to go the way I would like it too.  Some days I understand that the only person that is capable of taking care of me, is me.  It is a dance between knowing how and when to accept help, but learning not to depend on it.  And on the hardest days I will accept failures and defeats with grace, then spread my brave wings and fly.

"Fly"  SugarRay

Bring it!






Got my Big Girl Panties on, 
a full moon smiling on me,
I am ready for anything….
OK...life....love....art....heart... BRING IT!


"Moon River"    ortoPilot

Breaking Silence...


Just so you know…this is not a journey, not unless you want to pay for the trip! It sucks…I am tired all of the time…pain kicks my ass and it hurts…and if that is not bad enough wait until the bills start rolling in.  I should be having a hell of a lot more fun, for this kind of money.  Do not feel like being nice, lady like, kind, understanding, accepting or philosophical about life.  I am hurt, angry, and mad…I do not want to do this anymore, it really sucks!  
                         
"Breaking Silence"  Janis Ian
and after reading  the past few posts, 
it is entirely possible that there is
a tid-bit of bipolar thrown in!
AUGHHH!

Sunday, May 3, 2015

m&m breakfast

"Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.”
Dr. Atul Gawande
“Being Mortal: Medicine and What Matters in the End”
It is going to be another week of information and decisions, decisions and even more decisions.  After a slew of new medicines, I see a new doctor (a.k.a stranger) with a new set of solutions technologyICD, internal cardiac defibrillator. CRAP.... I managed to hit all 3 of Dr. Gawande's imperatives in 2 weeks and it pretty much sucks! That is what I am thinking this morning with my peanut m&m’s.
"You and Your Heart "  Jack Johnson          
yes, I know this is not an appropriate breakfast
 but I do inappropriate so well!
                 

Saturday, May 2, 2015

Ginger

according to the Urban Dictionary...
A rare natural hair color which inspires odd and sometimes fearful reactions from the more common colored hair types. Typically redheads are believed to be more sexual than normal, highly artistic, fierce fighters, and to have a greater tolerance for pain than average. The sun is their only real enemy. The Romans were said to have put red haired males into training as soldiers since they were believed to be fierce warriors. Rome also gave up on taking Ireland due to the number of redheads they saw there.
"Music in Me"  Paula Cole                            

In the Music!




Your heartbeat mimics the music you listen to!

YES!

"Good Girl"  Julian Moon

"you'll think I am magic, cause I'll make you dizzy"
"a good girl is a bad girl, that hasn't been caught!"






Thanks....DeeDee Quinn