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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Tuesday, April 25, 2017

Tickled it is Tuesday!

Mondays are their own kind of weird, which is why it is really great to be Tuesday.  It has been years since I was a  M thru F,  9 to 5-er and still, Mondays bring on a feeling of unreasonable panic. I cannot shake all of the years of harrowing dread of going back to work on Monday mornings. Getting 2 highly unorganized boys whose only true talent in life has been negotiating reasons why they should not have to go to school was followed by spending the better part of the day "stamping out the proverbial fires" that began over the weekend at my job.  Mondays were always truly traumatic! I loved the actual work I did and my family but the out and out drama of Monday mornings would do me in every time. To this day.....there is still a lingering irrational feeling of Monday dread, which is precisely why I am so tickled it is Tuesday!

"Monday Monday"  The Mammas and Papas

Monday, April 24, 2017

There will never be another Horsefeathers....

This one may have been here before, but it was such a great week, it is worth repeating! 

This was one of the day sails from St. Thomas and that is either St. John or one of the BVI’s behind us.  My parents were perfect Virgin Island guides, they had lived there a couple of years by the time we visited and were running day sailing charters from Red Hook to Leinster Bay.  After sailing all day, we were always welcomed back to the marina by all of the patrons at the thatch-roofed bar named “Horsefeathers” where we would spend the rest of the evening “sipping” with the other boat people. It was truly like every tv sit-com bar complete with all of the appropriate characters. The perfect tv bar except for the part where "everyone knows your name" and I suspect that is exactly how they liked it!  We had such a good time sailing in the islands that we were enticed into buying our first sailboat, a 22 ft South Coast and we named it after that magic Red Hook Marina bar….Horsefeathers…Several years later we moved up to a larger boat and it was Horsefeathers II…all good memories and such great times.  This is where it all began.  There will never be another real Horsefeathers whether it is under a thatched roof in the Virgin Islands or under sail!
"Summer Place" Percy Faith

Saturday, April 22, 2017

Dragon Slayer: Wanted.

I no sooner posted this before I was looking around myself like there might be someone else in the room I could blame for what I had done! 

Yes, I am ready, yes I want to, yes I am excited, but for the first time in my life, it is not that I am just fighting the emotional battle of feeling like I am qualified to do this. It is so much more than my typical risk of facilitating something that is emotionally charged as creativity vs. the joy of being in the company of such marvelous unbridled creativity.  There is a brand new dragon is this battle.  His name is “Will this body let me do it?” I have to face this dragon head on!
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
And 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…Honestly I wanna see you be brave.
"Brave" Sara Bareilles

Friday, April 21, 2017

Strangeness!

Oh, Thank Goodness!
On some level as artists, we already know this.  Rarely are we drawn to images that are photographically perfect!  I mean what is the point of excessively admiring what can be seen in life or something a camera can do already, cheaper and faster? 
As an art facilitator…of sorts…often the question of what is the difference between an “illustrator” and a “fine artist” comes up.  The question often arrives as “why do I like this “weirdness” so much?’  I will confess that both well-done illustration and fine art must have equal amounts of technical art skills and can be equally appealing.  But in my opinion, the important difference is the courage of a fine artist.  An illustrator will present a very photographic life like image.  The subject, color (if any), proportions, and surroundings, are realistic. The best examples I can think of are early portrait paintings or Norman Rockwell’s magazine cover images.  Our rational mind tends to judge this art by how realistic or lifelike it appears. But a fine artist consumes the same information, takes it into themselves, ingests it and for lack of a better way to describe this process,  spits it back out on the canvas, paper, sculpture, fabric, etc.…infused with their own style, feelings, and opinions.  It takes a huge amount of courage to present to the world our version of life, with all of its strangeness. 

The next time you are in front of a piece of non-conventional art, or a person or anything eccentric and find yourself unexplainably drawn to it, congratulations!  Your soul, not your logical rational mind has just recognized and responded to the “strangeness”.

"Not Other Way" Jack Johnson

Thursday, April 20, 2017

Medical code words....

For lack of serious medical training (and quite frankly I really do not need to understand every single micro medical reason) this is basically what is happening now, according to yesterday’s nurse visit, I have pulmonary edema, which is the medical code word for fluid in my lungs. Not sure if this pic is an accurate representation of the quantity of fluid, but I am a “show me a picture” kind of gal….however, I DO NOT want to have the medical school gross pictures….this one works just fine for me and my imagination!  There is a fine line between understanding and just plain knowing too much.  The good news is that with the nebulizer and by doubling (again) the lasix we ought to be able to manage this, feel better and have more energy pretty soon!
That and pee more than I already do now…and that really sucks!
"Doctor My Eyes"  Jackson Browne

Wednesday, April 19, 2017

how much I get away with....

My idea of right and wrong is an ongoing topic for me!  Maybe because I want or need to justify some things I have done or will do that might be seen as wrong…but wrong by what measure?  Is it legal, scientific, moral (and is moral the same as religious?) and who specifically decides?  I suspect in the end, being a good “right” person will be judged by those I knew, it will depend on how closely my life decisions match up with theirs…but I think the most important thing I really need to wrap my heart and mind around is I have absolutely no control over what they think. But still, I (and you) will have to wonder….how much of my life was good and right and how much I just got away with?.........Bwa-ha-ha……..


"No Such Thing"  John Mayer

Tuesday, April 18, 2017

Never really appreciated my metabolism....




And like this list is not enough….now it seems I need to add “because it makes me sick” to it!   I am still recovering from a big ugly sick from my NY trip, which BTW I really really really liked.  Now I have to add in the Birthday/Easter debauchery that among other things includes chocolate, beer, crab legs dripping in lemon/butter (and other things I will not mention, in an attempt to maintain my unsullied reputation) and I have one big ugly mess.  Dear god…. I miss my youth, and never really appreciated my metabolism!


"In My Dreams"  Amanda Palmer

Monday, April 17, 2017

It's all in the gloves....

On my recent trip to NY I had some “special” security concerns.  Now that I have the SICD implant I cannot go through the typical magnetic screener, then there was the battery powered oxygen
concentrator that I carried with me.  There are 3 other popular options.  #1 Go through the full body scanner,  #2 Have them “wand” me all over while avoiding the implant site and  #3 the full body pat down.  I might point out that both coming and going I was in the TSA pre-check line….I have yet to determine how or why I was chosen for that dubious honor or exactly what the difference was except I did not have to take off my shoes or sweater. 

Leaving Orlando I was walked through the full body scanner…no muss, no fuss, no magnetic screening!  The LaGuardia airport in NY was not so simple.  Even though I was again in the TSA pre-check list, I was chosen for the full body pat down.  My New York TSA screener was methodical, professional and she explained the entire procedure before she began.  It was over in a matter of 2 minutes, if that long.    I think the uncomfortable parts were that everyone was staring at me throughout the pat down, assuming I must be suspected of something horrible, and the other part, was when she snapped on those latex gloves.  Most of us have a limited experience with latex gloves, and those are typically in the doctor’s office.  As soon as the latex gloves are snapped on, we all brace for "what comes next" and it is never a good thing.  I bet if the TSA opted for happy colored knitted mittens, the fear and memories of the last unpleasant glove infiltration would reduce the ruckus about TSA pat downs being an invasion of privacy... 

TSA pat downs are truly quite benign…comparatively.  
It’s all in the gloves!


"Strip Me"  Natasha Bedenfield

Sunday, April 16, 2017

Easter mornings & Birthdays....





Easter Morning & Birthdays….Not as bad as having to share your birthday with Santa Claus, at least this is not an every year thing for me. Then when you get to my age, quite frankly perhaps it is time to quit acknowledging birthdays altogether!  But today it is about me and the bunny and I am pleased to say….he is indeed much older than me!


"Oh bla di oh bla da"   The Beatles

Saturday, April 15, 2017

Loved Big....

That I am a little all over the place…is an understatement! But (and you knew that was coming) I am feeling a little more “pointed in the right direction”. For the last few years, well since the heart attack and the heart failure diagnosis I feel like I had been running a race of sorts. Doing some things wrong and incredibly expensive inevitably damaging things that did not seem to work or stave off the progress of this disease and I have done some pretty stupid foolish things just because I want to or it feels good at the moment. I do not suspect either has done much to change how this goes. What I would truly like to do is to stop beating myself up for any or either of the things I have done in my life….good and/or bad. There is only one bit of good news. In my life.... There is one thing I feel I can claim I have done well…not all of the time, but over the long haul….I have loved big.

"No Such Thing"  John Mayer