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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Saturday, December 31, 2016

Everyday!







Oh my…. that is exactly what I want this year!  MAGIC and DREAMS and GOOD MADNESS!   I want to be surprised everyday….everyday….everyday!


"Everyday"  Dave Matthews Band

Thursday, December 29, 2016

In Theory...it ought to work!

Yea….that does sound like a critical “Millennial” kind of thing, the “it’s all about me” mentality. But at the risk of sounding like I am bashing the “Millennials” often times their point of view has some merit.  But like everything else in life, we all need a little moderation and balance!

So YES I am letting go of those things, but the space I create is going to put good into the world (and me)!         In theory….
it ought to work....I am painting again!
"The Fault in our Stars"  Troye Sivan

Wednesday, December 28, 2016

50 cent beer night....PLAN B...

Week #2 and still champions! I claim “we” like I make a significant contribution.  The reality is, every once in a while I do manage to contribute something no one else knew, but it is not enough to really make a big difference.  I have to tell you that the pressure is on!  For years the 4 of us went out on Tues Eves, only because a local pizza place had 50 cent beer….woo-hoo! But….they have sold the restaurant and the new owners stopped it….OH NO!!!!  So, We tried Smokey Bones, for their happy hour specials, nowhere near the deal and the food was more expensive….this was not going to work….THEN…they announced they would be playing TRIVIA... first place $40 gift certificate,  second place $30 and so on.  We figured if we could win our beer money back we could keep coming here on Tues!   There is a serious motivation to WIN….and it’s working!


"All Star"  OrtoPilot

Tuesday, December 27, 2016

Modigliani inspiration.....

Enough introspective, holiday, new year, learn to live with it crap!  It is time to get my hands dirty and some serious Modigliani inspiration, there are deadlines coming!!! I have moaned and whined long enough!

Monday, December 26, 2016

i am getting closer....


Looking over the past few years, I suspect most of my frustration came from not being responsible for the quality of my life.  But…here is where things kind of got screwed up…I think.  When you do what everyone says you should do, follow the advice of all of the professionals, I should get better and feel better.  I remember a time where I waited for test results to determine how I felt.  Giving away all of my power to people I did not know and a set of numbers on a piece of paper.  It is a difficult balance to figure out and practice.  I am getting closer!


"Heal the Pain"  George Micheal

(honoring the life of George Micheal, his music.  Loosing life Christmas Day, to heart failure)

Sunday, December 25, 2016

Enchilada Eve Lives!



16 years ago on Christmas Eve, in an out and out Turkey/Ham holiday dinner revolt, my sister opted to make a belated Enchilada birthday dinner for Skip on Christmas Eve, it was such a hit that we have continued to have enchiladas on Christmas Eve ever since.  It is now officially known in the Evans family as Enchilada Eve!  Nothing  makes my heart sing more than seeing a “not so traditional” family tradition continue through another generation!  And this year  (and last)  Enchilada Eve continues!  Thank you Jill and Darren and Harper, for the most marvelous Christmas Enchilada Eve ever!

Pssst…..the Jones Christmas morning cinnamon rolls are ready!


"I'll be Home for Christmas"  Michael Buble'

Saturday, December 24, 2016

Jazz and the Irreverent Angel


It’s the wonderfully irreverent Christmas angel mother gave me 15 years ago, but now she is my everyday angel! However....she still seems to shine brighter on Christmas Eve. Now she hangs from my bedroom lamp, the last thing I see before bed and the first thing I see in the morning and I smile and think of you!

Merry Christmas Mother! I remember seeing you dance in the kitchen in Miami when you thought no one was watching to Dave Brubeck Quartet Christmas jazz album on the second hand stereo in the living room.  It may very well be why I came to love jazz!


"Santa Clause is Coming to Town"  Dave Brubeck

Friday, December 23, 2016

Shakin'

In the words of Elvis….”there’s a whole lot of shakin’ going on”!  In some ways…this speaking about what I want is a fairly new thing for me…..I think I have always "spoken" but it has been in writing....right here. Here writing, I can speak without judgment or question…just let it rip!   I think my heart has been speaking here …..no it has been shouting here!  Shouting  about my loves, my passion for creativity and creatives for quite some time.  In fact on some level, I think creativity is why I am on this earth, it has and I suspect that has always be my passion and purpose!  But just so you know….my voice shakes like crazy when I try to speak /ask about me and how or what I want for this part of my own life. I have become horribly clear about what I don't want any more, now I have to figure out what I do want!


"Say What You Want"  Sheryl Crow

Wednesday, December 21, 2016

My team never wins!


Well not any more!  Although I cannot claim this as an individual win….I will excitedly go with the team win. Thank you Skip, Jill & Darren!  I mean I truly relate to and embrace the “Bad News Bears” mentality so winning is never really part of my personal game approach. It is more like the enjoy the moment, have fun thing…. but last night we took the “W”!  Holy Crap….my team never wins!   ...ANYTHING....EVER... I just do not win....and I am ok with it. But we won last night…the first place winners of Smokey Bones Tuesday Night Trivia game….and a 40.00 gift certificate and boy.....does it feel good!!  You guys are my superheros!! Woo-Hoo


"Superhero"  Ross Lynch

Monday, December 19, 2016

The first annual.... Goofy Reindeer Award

and I get it....the goofy award of the year, for yesterday’s actions, or lack there of!  Jason, Steph and the boys stopped by on their way from their BIG Universal Christmas weekend, for gift exchanging and opening, and then Darren, Jill & Harper came over with gifts to share in the fun.  All 5 grands all and all 4 children (the boys and beautiful wives), and I was so busy having a great time that I did not take my camera out.  No one did!  Not one pic of one of those rare times we are all together!  But rest assured it was the most amazing gathering of Evans!  So much fun having them all here, the laughing the excitement was music for my soul….having little people rip unceremoniously into packages, squealing with delight, torn paper and empty boxes everywhere!  If only for a little bit….they all came home for Christmas…for real!  How lucky am I?


"I'll be Home for Christmas"  Micheal Buble'

Saturday, December 17, 2016

I could NOT make this up!

Yesterday I got a call from the Vitas chaplain/spiritual advisor requesting to come for a short visit. Although I am officially a card carrying "heathen" (aka non-christian yet extremely spiritual). I thought, at this point, why not, what can it hurt, could be interesting? In an hour or so a huge man was at my front door introducing himself. I invited him in, and we chatted for a few moments, he asked about my spiritual beliefs and I briefly summarized  my less than typical beliefs. He was quite understanding and open to my spiritual bend and I was thinking this could be an interesting learning experience for both of us. As conversations go, I returned his inquiry with what I felt was an equally appropriate question of my own, asking how he had come to choose his less than typical spiritual practice as a hospice chaplain.

He explained he was not always a preacher/chaplain ……he had been a WWF professional wrestler….WHAT????

In his wrestling days!
Yep..you read it right “Jack (Towers) The Outlaw” WWF championship belt holding ex-professional wrestler is my spiritual advisor….and NO you just could not make this up. Of course he is retired now, went to seminary school, but if you ever get to meet him, you will see that he is every bit still the wrestler as he is a preacher….

It felt like I was in a surreal warped episode of WKRP in Cincinnati where the wrestling Reverend Little Ed just walked into my living room.  It took every ounce of strength I had to remain composed...I think my tongue was bleeding from me biting it!

Anyway as it turns out...he is truly a very nice man and wildly more interesting!   Besides...if I were to receive a miraculous religious “experience”.... Wouldn't it be a hell of a story, if it were with a wrestler rather than a regular old milk toast preacher! .....Bwa-ha-ha-ha….The truth is so much better than fiction!
Wresting Data website link
"WKRP opening theme song"

Thursday, December 15, 2016

wickedly, wonderfully, inappropriate!


Whew…..I have had a belly full of being mature, calm, accepting, focused lately…what I am really ready to do is go out kick something, scream and in general be self-centered and totally, wickedly wonderfully inappropriate!  Who is in?


"Good Girl" Julian Moon

Tuesday, December 13, 2016

They know....

They know....I am not strong, and I am most definitely afraid!  and…..I write! 
It feels like all of those parts of life and death that I have ignored, are standing just outside the door….and I do not want to open the door….not yet!  I have many more rules to break, barriers to go beyond, and good creative stuff to do! But just so you know….all those that accuse me of denial, I understand completely, I always have,I did not show it the way that was expected I chose to face the fear and move forward anyway with the strength, energy and love I have now.  Yes I am afraid! and yes, they already know ....."no fear" is tattoed on my foot...and I repeat silently, constantly to myself  "no fear...no fear...no fear"


"They Know"  Eric Bibb

Sunday, December 11, 2016

Horrible....Wonderful.... Chaos!

Oh my there has been chaos this week!  It is that time of year, and another Insurance company is leaving the state of Florida…if you have been paying attention to my (sorry about that)  grousing  lately, you already know that this is the 3rd year in a row that the company that has covered me has discontinued service in FL and it is a total pain in the ass to find a new company. This year it is even more complicated because none of my current docs or hospitals are on the 3 current companies I can choose from. It has made me consider different alternatives. 

I have received many gifts from the Universe recently, but a priceless visit with Dr. Ihrig  has been the greatest of them all.  As I began doing the research on alternative palliative physicians, the process took on a life of its own. After a routine medical evaluation, all of the sudden I was being, seen by docs, nurses, and a host of other medical people in a rapid fire succession parading in and out of my house, it appears that the Universe does know what I need and when I need it.  As all good things go, when it is right, it all falls into place and I have been moved from the simple palliative care that I wanted to regular hospice. I know….I hate that word! But it is not what it used to be and truly more suited for the help I need, however…. it still makes me shudder…I am assured it no longer means that heinous 6 month prognosis.  My head understands that horrible hospice label, but still my emotions are screaming AUGHHHHHHH!  And there is where the chaos is. But it has been good chaos and it is beginning to settle… as all chaos does. 

Now….there is a new wonderful direction ahead! I do not have to chase doctors any longer, the horrible invasive expensive tests are over,  the nurses come to me,  the business end of this (which by the way is absolutely horrible) is now all taken care of, all covered by my new insurance (thank you Blue Cross)….and now I am free to live and it is going to be amazing!
"Connected" Eric Bibb

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