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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Wednesday, September 30, 2015

CRAP..... it's the Real World!


In today’s world of online banking, on line bill paying, debit cards, automatic deposits and drafts it is not surprising that every once in a while you will run into a bad situation.  And although I have done my best to protect myself and diligently watch my accounts, one slipped through.  Yesterday $100.00 was withdrawn from my bank account and deposited into an unrecognized PayPal account.  I reported the fraudulent transaction to Wells Fargo and PayPal had the specific account info on their transactions. We were able to identify the person right away (now we have to figure out if he is real or fictional). PayPal account holder, Kevin Henton, if you are real….you are in deep yogurt!

In the real world I am afraid if you use the technology this is part of the price we all have to pay! The good news is, hours on the phone and a trip to the bank and it is all straightened out, although it would have been great if it never happened at all, but I do live in the real world.

              "Smuggler's Blues"  Glen Frey

chances are...

This is a mouthful of truth!  I do not have to be creating anything big or grand, I just need to be creating or all of this negativity sneaks into my life.  I do not want anyone to think I am a goody 2 shoes because if I could figure out how to aim the destroying at others, I could handle not creating every now and again….unfortunately it always backfires and ends up destroying me…..AGAIN. 

It is not that I am that nice, I am just tired of destroying myself…. Chances are I will be actively creating, thank you!

"Be Honest"  Jason Mraz

Tuesday, September 29, 2015

ART: making a living and a life!



I finished the book (to go along with the class) and it is off to the publisher! Woo-hoo! And through this enforced recovery, and take it easy, I have learned, no matter what, the art and the creativity does not leave, it is always with me. No one or no thing can take it from me, it is the one thing that is with me forever unconditionally!


"This Will Be"  Natalie Cole

Sunday, September 27, 2015

it has not ruined me!

And I am finally beginning to believe it!  There have been weeks I was not sure and then more weeks that I begged just to have the life I had before open heart surgery back (I would take anything, other than the pain and grief I had).  And although before was not the greatest situation,  I could function without anyone knowing.  I could keep up the ruse long just long enough to fool you, but that was all I really needed to do.   The time came several months ago, it got really hard and I knew I could not keep up the lie any longer.  But today, today…. finally today, I believe I will go on, I do not know how or if it will get better than it is today, but all I need to know today is that this has not ruined me!
"We May Never Pass this Way Again"  Seals & Crofts

Friday, September 25, 2015

This Pope!


When it comes to Catholicism or any organized religion for that fact, I am a card carrying agnostic.  And just for the record the definition of agnostic, “is one who believes it impossible to know anything about God or about the creation of the universe and refrains from commitment to any religious doctrine”.   However, personally it does not eliminate me from admiring, celebrating and marveling in the magic and the mystery of the unexplained wonders of this life!    With all of that being said, I have to say that I am enthralled with this Pope!  He preaches against unrestrained greed and asks all of us for humanism, compassion, love, and cooperation!  How can you not admire him as a spiritual leader?  He does not dwell on Catholic or Christian doctrine, but is a true emissary for love!  He is an amazing and effective force for good in this world and I truly admire him and his mission!


"What the World Needs Now"  Jackie DeShannon

....be what they are meant to be


While this heart healing feels like it is taking forever, I also have the opposite feeling that other parts of my life are changing at a rapid and uncomfortable speed. The two equal but opposite experiences are overwhelming at times and difficult for me to grasp and make sense of. Then this quote swept across my computer at just the right time and I was reminded that life experiences can be just like my cherished soulmates, they are all here for a reason, I just have to let them sweep through my life and be what they are meant to be.
 
"Road of the Heart"  Ann Reed

Fear is sinister!

Where have I been?  I know this!  But could not apply is to my life, the heart surgery and the heinous waiting I am doing now, waiting to find out if there was or will be any improvement!  Fear has quite literally eaten me alive!  “Fear hates uncertain outcome” whew…… I am engaged in the biggest uncertain outcome of my life….no wonder life has been so weird and I have felt so unlike me.  I know and have known for the best part of my life how damaging fear is.  It has been so important for me to know that I had it tattooed on my foot thinking it would be a constant reminder, not to let fear grab hold of me.  But fear is sinister, it takes vigilance!  So now I need to get creative and deal with it!
"Change the World"  Eric Clapton

Wednesday, September 23, 2015

There will never ever be another summer like this one.....

There is something about fall that is refreshing and new. I know in most places it is sign of winter approaching, but in Florida it means a welcome change is close. The long season of oppressive heat, horrendous power bills, giant mosquitoes and hot car seats that can blister your behind are going to be over soon. I have never had a fall that I have been so excited about life starting over again, it is the first time in 5 years that those words have even been possible! I am ready for crisp, and happy, and full, and energetic….I am ready for life to start over! There will never ever be a summer in my life this one. 
"A Summer Place"  Percy Faith
just a note....I have spent the last few days immersing my self in the the possibility of magic...and today it seems to have manifested not once but twice!  One was hearing from a dear friend I was sure I had run off for good with my moody recovery and the other was today's post I just happened to insert the song that was my parents song,Guess who called me?  I think there really is magic!   
PS....I am reading Elizabeth Gilbert's new book  "Big Magic"  
yes I know...I know what you are thinking!

Tuesday, September 22, 2015

Not using words....

I have been alone more than usual lately, not because I chose it, but because it is what I had to do.  I have rattled around and behaved to a certain extent, and done what I have supposed to do (according to others instructions) but the most important part of this recovery has not been nor will it ever be about my physical heart, but it is going to be about my emotional heart, who, how and where I need to invest my life so that it creates the most meaning.   I have had to listen to my own heart, and it is not using words!
"More than Words"   Extreme

Monday, September 21, 2015

Alone again and fighting.


Oh boy, if you only knew how many times I wanted to and sometimes still do want to.... quit. When those times come I sit in my own puddle of tears alone and frustrated, and as much as I think I want someone to come save me I know in my heart there is nothing they can do. This is something I have to do alone. There are many expectations that I have had recently and through all of my life that I have waited patiently for someone to guide me through and they have never arrived. Do I not know how to ask, and if I did  ask I am afraid they would say no or laugh? At any rate, I just need to stand up put on my big girl panties, take care of me and not ask for or expect. Alone Again and if I want to be strong I have to do this alone and it is ok. I am fighting!

"Alone Again Naturally"  Gilbert O'Sullivan

Sunday, September 20, 2015

I don't hate anymore....


And I guess they do still matter to me to some extent, but not to the point that I will allow myself to be upset about it or hate or have my feelings hurt, I do not give anyone that kind of power over me anymore.  I no longer allow that kind of hurt in my life.   It just does not matter anymore.

"Say Something"  Big City Word/Christine Agulerra

Saturday, September 19, 2015

Wake up...Wake up!

In a private  FaceBook post I explained how I was doing, and that it would be another 6 weeks before the testing begins that will determine if any of that hibernating tissue in my heart is responding,  A dear artist friend of mine immediately dreamed up an image of my heart yawning and stretching and beginning to wake up after a long hibernation!  What a magnificent image, to think about! I love it and will be using just that image in my healing meditations!  What a spectacular way to start every day!  Thank you! Thank you...Thank you!


"Daydream Believer"  The Monkees

Friday, September 18, 2015

Purple Luggage Woo-Hoo!







Woo-Hoo!  Purple luggage has arrived and it is time to begin letting the excitement fill me with anticipation for my very first Caribbean Cruise in a balcony suite and my children's wedding aboard ship!  I think just the act of going is a marvelous thing!  What better way to celebrate this trip or any other trip than PURPLE! It is great and I will be too!


"She is not Afraid"  One Direction

do it very well....


Whenever I am willing to ask "What is necessary next?" I have moved ahead. Whenever I have taken no for a final answer, I have gotten stuck.     Julia Cameron

I am caught up in learning in an on line class called "Word Play" and reading reading the "Teaching Artist Handbook" from the University of Chicago Press.... I am grounded for awhile and I am thinking that recent events are pointing me in a new more focused direction, it is up to me to pursue them with all my heart,  I still have so much life to live, and I want to do it  very well! 
"Smile"  Uncle Kracker"

Thursday, September 17, 2015

How I get through this!

Just spent the last couple of days in doctors’ offices and 4 week checkups.  Aggravated and pissed at my body for taking such a long time to recover.  Although I have been assured that I am doing well and my expectations have been totally unreasonable, this is going to take a longer time than I could have possibly imagined.  How did I miss this in the pre-op preparations?  It is my opinion that they did not tell me, or anyone else for that matter.  No one would ever agree to this if we had a clue what the recovery would be like!

Whether they did or didn’t, is irrelevant now!  I am 4 weeks in, so that means 4 weeks are behind me, and I will assume they were the worst!  There have been some major stumbling blocks, but I think I am past the really bad ones of them now.  I am now officially allowed to drive!  Woo-hoo! But warned about exposure to places with lots of people and bacteria, apparently my immune system is still quite compromised.  Can’t they just say “drive baby drive, you are free”?

In 6 more weeks (again not what I was originally told) we will begin the testing that will determine whether or not the hibernating tissue in my heart is responding and beginning to work!  It is going to be a long 6 weeks of not knowing.

This is more than I could have ever expected, it is done, and my job from here on out is to facilitate pain management and magnificent healing that is how I get through this! Laying down my regrets, I am grateful!
"A Beautiful Day"  India Arie

Monday, September 14, 2015

Forward

I have to admit, and I have said it more than once to more than just a few people that if I had to do this all over again, with what I know right now, I never would have done it!  My biggest desire was that I get a longer life with a better quality than I had.  Maybe that was expecting too much, but that is what they said could happen.  It still hurts, is hard to breathe and my quality of life right now sucks!  And all I can do is continue to hope that this a normal part of the healing process, but the reality is the medical industry does not want to deal with this part, they send you home to do this on your own……and it is the hardest part. So….I am going to keep on breathing, keep on walking and keep on going forward the best way I can. But I I do see the cardiologist tomorrow….I hope I will know something wonderful and exciting!  Moving FORWARD!

                   "Arms Around My Life"  Janis Ian

Sunday, September 13, 2015

How much more....


Repeat this to myself every day at least 100 times.  I had no idea!  I get frustrated and feel like surely there is something wrong…why is this taking so long…people, all people, even the ones that care about me but have no experience and/or knowledge seem to think it will make me feel better if they tell me “it takes time and patience”.   No one ever said this will take everything I have got. You are going to be hurt and angry for no reason. That my own body is going to work against me. Exhausted for no reason, chronic pain in my ribs and chest, a huge and ugly incision  down the middle of my chest that does not want to heal.  It is taking everything I have got, and some days I do not know how much more I have….

                 "Heart of Gold"  Neil Young

The doctors, nurses and hospitals have taken good care of my disease, my broken heart and I am so very grateful, but they have done nothing to take care of me and that is the pain that needs the most attention, right now.   I was never told what how much pain and discomfort to expect or how long it would last, how much energy it was going to take just to sit up and be awake.  Our medical system is horribly horribly broken, they focus on and honor the disease and my broken parts. My quality of  life of life while healing and afterwards has been ignored.  It is backwards.  All I wanted to accomplish with my life was to live well and with meaning.  Right now I am doing neither, and that hurts as much as the exhaustion and physical pain.

Saturday, September 12, 2015

I do not have to invite them....

And  I have the best tea parties!  I relate to every single one of these personalities, in fact I can identify each of these behaviors in my life.  There are times when one or all of these traits emerge in me and I am embarrassed, ashamed and I want to hide.  

What I need to do is learn how to celebrate them…..all of them!  They are all a magnificent part of who I am.  There will always be people in my life that will not approve of me, how I navigate problems or celebrate life. 

These people will always be in my life, but I do not have to invite them to my parties.


"I Don't Want to Spoil the Party"  The Beatles

Thursday, September 10, 2015

I Can do This.....

I can do this….I can do this….I can do this…..I can do this…. Every day is different, harder in some ways, easier in others.  The desire to have my life back is stronger and stronger, but the reality is my body/my heart still is not letting me do what I want to do and it is so frustrating.  The ache and soreness in my ribs and chest suck every ounce of physical energy out of me.  I have to concentrate on keeping my emotional energy high, I have to find those things that give me purpose and direction and immerse myself in the joy of those accomplishments.

"Make it Mine"  Jason Mraz

Wednesday, September 9, 2015

I might spit....

Caution......Serious GROUSING ahead!
This has been crap!  I have never had anything physically hurt this much and for this long!  Yes I know I have been spoiled over the past few years and the pain I did experience could be quickly dispelled; I mean a matter of seconds, with no pain medicine hang-over….the joys of nitro-glycerin! Now the ribs ache like crazy and the damned incision will not heal and close.  The discomfort and pain is chronic and I am so frustrated with it I want to spit!  I hate this, I hate this….my heart is better but my chest hurts more now than it ever did, it is not how this was supposed to be.  And they all keep telling me relax, it is going to get better, in the meantime time I cannot sit here and let it take over my life, but I might spit!

                                                                             "Jagged Little Pills"  Alanis Morisette

Tuesday, September 8, 2015

By Doing What I Love.....


This is where I will find my purpose, my desires, my talents, my joy all seem to be pointing me in this direction, again.  It is not time for me to quit or slow down, it is time for me to go back to what I love to do.
 This is what I need to connect to!
To inspire and awaken the hearts of others!  To laugh, dance, celebrate, teach, practice art and life is what makes me happy….It is time to do more of that!  They may have tried to fix my physical heart but they stripped it of all meaning and purpose, it is going to be up to me to take back my life and fill my heart with what I love!


"Everyday"  Dave Matthews Band

Monday, September 7, 2015

Connect....

I have no idea what I am doing…..but I know clearly what I am not doing! 

The more I have dug in my heals and decided I am going to beat this, the more I seem to stay stagnant in my own recovery.  Doctors, nurses, friends and family all tell me to relax, this takes time, be patient, give myself time to heal, but I know in my heart that there is more to it than that.  I have struggled and pushed and not been able to wrap my head and my heart around what I need to do to make this happen. The harder I tried, the worse it seemed to get.

Laying awake in my bed last night, unable to sleep, I felt a shift, and I knew what I needed to do. I have got to let go of this ego centered body conscious healing. Let go of needing others to help me, when there is quite frankly nothing they can do.  I need to simply let go of all of it and connect to my spirit, my passion,  my source, trust that my heart knows what it needs to do.  Connect….one of my core desired feelings.  I have known this all along.  Connect and fearlessly trust my heart, connect to my passion and my purpose.
"Undun"  The Guess Who

Sunday, September 6, 2015

Brene' Brown is singing to me this morning!

from "Rising Strong" Vulnerable
"You're the Only Thing in Your Way"  Cloud Cult

I just have to believe right now.....


And I find myself looking ahead and panicking!  

What do I do next?  
Can I go back out on the art show circuit? Galleries?  
Is it worth it, can I do it?  
Do I teach? 
Do I create?  
What do I do now?  
I know, I know, I know…take it easy, it is early, do not worry, just get well.  So much easier said than done!  I know I have so much more to do, I just do not know how or where to start!  I just have to believe right now!
Please!


 "Fear"  Jazmine Sullivan

Saturday, September 5, 2015

Class act!


Yep, I am a class act!  3 full weeks of being cooped up in hospital and/or house and my first trip into the real world is the Dollar General store around the corner.  Actually I went (or...actually I was taken) for plastic garbage bags, fabric softener and kitty treats and ended up having a blast and spending $66!  I got  all kinds of fun things. 4 pairs of swim fins for the grandsons beach trip next summer (a terrific end of summer mark down sale) a hickey that will make spaghetti out of veggies, and a mess of stuff I did not know I had to have! Excellent tacky DOLLAR GENERAL FUN !

"If I had $1,000,000."  Bare Naked Ladies

I am....





starting over again
learning…healing…asking…growing...
figuring out who and what and why I am! 

They have done all they can…
it is all up to me now!


"Heal Yourself"  Ruthie Foster

Friday, September 4, 2015

Again and again and again...

I seem to have had more than my share of again and again.  I have started over too many times recently and all I need to know right now is will I ever get it right?  Maybe the first times I was headed the wrong way and needed to start again to change directions.  Maybe my body has just been screaming at me to slow down, or maybe I want too much, too soon….it would not be the first time that has happened! I do not remember ever having to do anything that has been this physically and emotionally tough,  I was grossly underprepared and it has challenged every single part of me to the extreme.  When I come out of this I will be so so strong and surprisingly….. it is a little better today maybe I am finally headed in the right direction! If not…I will be doing this again and again and again until I get it right!
"He Heals Me"  India Arie

Thursday, September 3, 2015

When things seem to be falling apart....

Because I could….did it mean I should?
In the past 3 weeks I have been through planned open heart surgery, which did not go exactly as planned, a TIA and kidney failure. The last 2 events were NOT planned…for the record I am back home from the hospital again (if you are counting, this is the 3rd time) and back on the recovery trail again, but this experience has me asking the question, because I could, does it mean I should?

Five years of heart failure have not been fun, in fact it has been difficult and painful at times, but I was adjusting physically and emotionally.  So in fairness, some of this fear and doubt may be the availability of a new life that I just cannot see yet and not sure how or what I can do with the rest of my life.

It could be that these types of setbacks are typical and I should have been prepared for the possibility, but I had no idea.  The inability to make any recognizable forward progress toward getting my life back has been extraordinarily physically painful, financially overwhelming and emotionally devastating. Although I know I should be eternally grateful for a new chance at life, the fact remains it is still too early to know if the surgery worked, and I am too much of a physical wreck to see through to the better days, yet. 
Yes, I know I need to give it more time……
Yes, I know I should be eternally grateful….

Yes,  I know….I know…I know, but before I reach for any of the amazing highs, that I hope and pray are coming my way,  I suspect it is necessary to survive these horrendous lows.  And this nagging question that keeps playing in the back of my head, Because I could have had this surgery…does it mean I should have???  I hope I will find that the answer is an irresistible, incredible yes, yes yes, but right now I just do not know.  
"Watching Over You"  Ann Reed