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...

Friday, November 27, 2015

I do not need to be safe anymore!

There are times that the ideas will come at me faster than I can keep up with.  That is not to say they are all good ideas, just a mess of ideas. 

There are ideas I have that are so outrageous, that I am too scared to pursue them.  Then there are the ideas that I will discount almost immediately because they seem just too ridiculous to be any good.  I want to be “safe” but each and every time I have worked up the courage to follow the outrageous ridiculous ideas I am spectacularly rewarded!  I need do pursue more of those ideas!  I do not need to be safe anymore!

"Try"  Colbie Caillet

Tuesday, November 24, 2015

Thanksgiving blasphemy…..

My annual Thanksgiving RANT!!!!
When I turn on the TV there is at least one cooking show on every minute of every day  portraying the culinary experience  as a fun and fulfilling activity that not only  satisfies a need to be creative but keeps the family well fed and healthy.  My response to this entertainment trend is BULL PUCKY! Where is the cooking program for the “I Hate to Cook” people? Where are the cooking programs that promote a delicious home cooked meal in 3 ingredients or less?

I am not cooking a traditional Thanksgiving meal although I did for many years!   I will indeed be giving thanks, but not by using every pot & pan in my tiny kitchen, preparing and cooking really bad food all day, washing, soaking and scraping all night, then stuffing a refrigerator full of leftovers that will probably spoil before they are eaten and eventually be thrown out. And of course the worst part is, the incredible guilt I feel because by the end of Thanksgiving Day I have truly hated the entire experience, and am anything but thankful.

This year I will be celebrating Thanksgiving with family and friends, sharing a few beers, great stories and amazing conversation.  Our thanksgiving blessing will be on "no reservations needed" Wednesday evening  over a blooming onion, followed by a nontraditional but marvelous cooked just the way I like it....Thanksgiving  filet!.  Then, and here is the best part, I will go home to an incredibly clean kitchen! No cooking.... No muss...no Fuss...oh, I am so grateful!

Thanksgiving day I will watch the parade and Santa arrive, remembering how the boys and I marched around the coffee table drumming to the marching bands with the pots and spoons I had just set out to begin cooking.  I will smile and remember, how unorthodox most of our Thanksgiving dinners have always seemed to be despite our best attempts to be Norman Rockwell normal.   This year...I will express my gratitude the best way I know how to,  dancing with paint brushes in my hands in front of a large, white, freshly stretched and primed canvas ...and...there will be no cooking!
                                                                              I know, I know Thanksgiving blasphemy…..

 "Good Girl"     Julian Moon

Sunday, November 22, 2015

Did I miss Thanksgiving?




I went out last night….I know….I know it does not happen that often, but every now and again I will venture out ….daylight savings time is over, the time has changed, it was dark and the first thing I noticed is that at least one house per block (and sometimes more) already had their outdoor Christmas lights up.  Then….because I could,   I peeked in windows as we passed by, more already had their trees up…..what????….really?????  Did I miss Thanksgiving?


                 "Bottle of Wine"  The fireballs

word of the day....



Yes…yes….yes….the word for the day, the month, the year and then some.  It is the most marvelous word I think I have ever seen and the definition is even better.  If you just happen to be one of my regular blog readers,  you WILL be seeing this word again and often!

"Unwritten" Natasha Bedingfield

by stories....

The 2 weeks from the time you were born to the time I could bring you home felt like forever. You were so tiny; at a little over 4 pounds when they let me bring you home But, it feels like that was just a few weeks ago. Surreal is the only word that can describe how 40 years feels like. Between nursery school , Cub scouts, 4 am. Christmas mornings, GI Joes, stitches, summer camps, swim meets, first car, military, weddings, children of your own and a BAZILLION stories you turned into a man. I do not know how it slipped by me so fast!

But, oh my the stories….the stories! I love you and I am so proud of you! Happy 40th Birthday!
"House at Pooh Corner"  Kenny Loggins

Thursday, November 19, 2015

Love Potions...they are REAL!

The exhibition  prospectus went out today and it really is going to happen. Half of me pinching myself because I am so excited. I will get to to use my art to speak to something so important to me. The other half of me is scared shitless, there are so many opportunities to screw up on such a spectacular magnitude!


"She Just wants to Dance"  Keb Mo

Wednesday, November 18, 2015

F#ck it Bucket...Installment #1

Yes, yes I know it is rude and crude, but….

I have had a “bucket list” for some time now and it truly is a wonderful thing.   I try to focus on the positives in every situation but I am finding that I need balance. 

To achieve this stability… I am formally instituting my F#ck it Bucket List.  This will be where I mentally chuck all of the ignorance, anger, and general pissed off-ed-ness that I seem to be having to deal with in my life more and more.  Which incidentally seems to increase around election season.

My Bucket List is a list of my hopes, my dreams and my wishes for positive life experiences,  my F#ck it Bucket List is an inappropriate but much needed release of those destructive thoughts, disapproving people and damaging experiences.

 So here is F#ck it Bucket  Installment #1  ....WHINERS…
How about trying a little gratitude for all of the wonderful things, people, health, experiences that you do have, quit complaining, and grumbling to others about what is right and wrong.  Whining never solved anything and it is annoying as hell!  Just stop it! 
Whew…… that feels kind of good!
"Beauty in the World"    Macy Grey

Tuesday, November 17, 2015

All the same....

My Face Book page is a snapshot of dramatic incongruencies. Two posts, both professionally produced, not their own original thought or opinion and by coincidence right next to each other, showed up this morning on my page.  One post asked me to type the word “amen” to a Christian values statement.  The other post asked me to support by clicking  on the "like" button, a governor that does not want to help victims of violence, clearly a very un-Christian value. I wonder if they really read, research and believe in the post they are now “sharing” with me…or just re-posting a banal thought because it is a popular thing to do.

Could it be that one mouse click they feel like they have an opinion (even if it is not theirs)? Are they unwilling or unable to develop and speak their own thoughts and feelings? I love that social media gives us an open forum to express our opinions but I am finding most end up posting the opinions of others, not even caring enough about those opinions to check the sources of the posts they are sharing.  Consciously or not, by simply sharing an opinion without fact checking it's validity they end up spreading misinformation, intolerance, lies, mistrust and hate.

When did not having your OWN opinion  become so popular?  When did we become so afraid to be different and speak our own minds?  Why is it easier to focus on being negative and  being the same?
"Think"    Aretha Franklin

Monday, November 16, 2015

The best training....


As much as I sometimes just want to quit, some part of me says “nope” I have more to do, more to say, more to give.  So tomorrow, I march back in there for a nuclear echo.  Then I will come home and create.

Art takes guts, it is not for cowards…. and it was the best training I could have possibly gotten to help me deal with the challenges of my heart.


"It Don't Come Easy"   Ringo Star

Sunday, November 15, 2015

and... Wa-Lah.....

I love it when it works!  I have spent the last ….too many to count…years with plain clear glass in the front door and the side lite.  It was originally designed and sandblasted but at the time the boys were still teenagers and that is a whole other story.  The beautiful but unbelievably broken frosted glass was replaced with clear glass and meant to be temporary, unfortunately many of my temporary fixes, if they function, seem to become permanent and so the clear glass has been there for years.  It really was not much of a big deal until I was accidentally caught by the UPS man making a mad toweled dash down the hall from the bathroom to my bedroom….whoops!  That close encounter got me seriously motivated to do something!  Last night I finger painted the glass in the front door with clear glass paint and ….. Wa-Lah….! Clear...but NOT!
"The Kind You Can't Afford"  Madeleine Peroux

There is no time for anything else

OK, so here is a confession…At first I was horribly upset, angry and frustrated when they told me all indications are that the hibernating tissue in my heart has not responded and probably will not.  The ejection fraction has not improved.  I have never gone through more pain and more expense for anything as much as I did for this.  I wanted it to work so badly!  But…I also wondered how my life would look afterwards.  Would I always have to be vigilant, giving up foods, activities and things that others might think would not be good for me?

Last week…I got permission again, to do anything I felt like doing!  If I enjoy it and my body can tolerate it “do it”.  (I do love my cardiologist Heart Failure advice!)  I have had almost 5 years of this kind of thinking, risk taking, rule breaking and doing what feels good.  I was really kind of afraid I might have to give that up to nurse a weak surgically altered heart for the sole purpose of living longer, and I do not think I really wanted to live like that. (yikes.... Did I say that out loud?)

I risked it all….I lost…but not really!  I do not want to tip-toe through life, afraid.  I want to be kind, silly, warm, compassionate, weird, loving, emotional and if I am lucky ....somehow be wildly inappropriate at least once, every single day!  “There is no time for anything else.”
"Ob-La-Di - Ob-La-Da" Life goes on…. The Beatles"

Friday, November 13, 2015

and she just showed up.....


A lesson in letting go, which some of you may know is NOT what I do! I control everything, partly my saving grace,  partly my undoing!   Before I even started I whipped up that grid, because somehow, some way I needed some structure. I have no other explanation…ridiculous to begin what I though should be a “let it rip” abstract with squares and rectangles.  I slapped on some happy colored paint with no image in mind, and she just showed up.  The paint told me what it wanted…. I just captured it with a few chalk lines and filled in the blanks.    I have a date with her again tomorrow in the studio, and I cannot wait!  Great fun experimenting it is a new day!

  
"There She Goes"  OrtoPilot"

Thursday, November 12, 2015

Heart whispers!

Sometimes I just need to ignore the rules, quit weighing the options, and quit thinking about obligations, commitments, responsibilities and what is good for only my health.  It is time to begin paying more attention to my heart and what is good for my life!  It is time for me to wildly, passionately and fearlessly love life! 

"In My Mind"   Amanda Palmer
And it's funny how I imagined,
That I could win this, win this fight
But maybe it isn't all that funny
That I've been fighting all my life
But maybe I have to think it's funny
If I wanna live before I die
And maybe it's funniest of all
To think I'll die before I actually see
That I am exactly the person that I want to be
Fuck yes
I am exactly the person that I want to be

Wednesday, November 11, 2015

A new life plan is NOT giving up...

This one bites and it bites hard because I recognize me.  All of this time I thought I had no life plan, when the reality is….I think I did, but was too chicken to admit it to anyone. An adored creative that facilitates creative successes in others as well as a phenomenal artist in my own right, was a pretty spectacular life plan, and it appears that I am totally attached to it, even though I thought it too self-serving to admit it out loud. The fact is I have known for some time I needed to make another plan, but for reasons that are both admirable and downright stupid I have hung on to the “I can beat this” mentality.  The just hang on… keep pushing… be strong… don’t let anyone see you weak or in pain and other sappy Hallmark Card sentiments are just that…..sappy sentiments written by people that have no idea what this is about.  The reality is there are things in my life now and in the future that I cannot change ….I have got to able to recognize and change my life plan to incorporate this reality.  A new life plan is NOT giving up or giving in or an admission of weakness and/or failure….
"All Star"  OrtoPilot

Monday, November 9, 2015

Cha-Cha-Cha


I am good to go... although still stunned by the official  recent and disappointing cardiac function test results (even though I had some suspicions).  Now is when I need to remember how much staying busy (aka staying in trouble) and my attitude (aka breaking rules as often as possible) have been great for my overall health and done so much more than all of the medicines and surgery have ever done! In the past, nurses and doctors were surprised by how much I do and accomplish, at times wagging fingers, insisting that I may be doing "too much" even accusing me of denial.  I want to live, laugh, love every single day until I fall down in sheer exhaustion!
If this is denial...so be it and woo-hoo!
Optimists are not oblivious to reality, but  chose to move forward with life in spite of it.
                                                   Cha-cha-cha!
                   "Don't You Worry 'bout a Thing"  Stevie Wonder

Saturday, November 7, 2015

The BIG GIRL PANTY CODE....None of that Sissy CRAP!

It seems like in today’s world that any time there is a serious medical problem, it requires multiple doctors.  Oh how I long for the ONE DOC days!  I feel like I have to deal with a cast of thousands for my one poor heart.  Yesterday I saw my most favored cardiologist a young, smart, intelligent, personable and sensitive woman.  I know that is almost an oxymoron…. a sensitive cardiologist, but I have one!  The rest of them, electrophysiologist, surgeons,  PA's etc. are all pretty much compassionless boobs!  

My wonderful cardiologist and I talked frankly about what this new and disappointing set of cardiac circumstances are and what it means for me and my life.  Although the surgery did not work and the hibernating tissue has not recovered any function, the additional blood flow has reduced the amount of angina I have.  And for that alone I am so grateful, not having so much pain in my day to day life is a great gift!   Although I wanted desperately to get both quantity and quality from the surgery, if I had to make a choice of one or the other I am  pleased that for now the quality of my life will be better.

I have officially been given the OK to do anything I feel like doing and my body will allow me to do, with a finger wagging warning about not over doing!  It is less than I hoped for, but I am learning how to celebrate and be happy with everything I have received.

Mother, you sent this too me just at the perfect time! 

"The Heart of Life"  John Mayer

Friday, November 6, 2015

again.....


YES... again... the same old shit again!  Back to the doctor's office with the repeat performance of, how come my heart is not doing what it is suppose to do.  Somehow I feel like I am responsible when my organs do not respond like they want them to.  I hate it! 
"When Angels Cry"  Janis Ian

Tuesday, November 3, 2015

Pee on it and walk away....

Today had all kinds of possibilities of going down the toilet, and every single one of them came to fruition.  Communication with the doctors has been difficult and today’s office visit I began to understand why.  October test results seem to be saying there has been little or no improvement in my heart.  The day before surgery my ejection fraction was 30% (which by the way was up naturally almost 5% points from the previous April echocardiogram results).  The second echo done on Oct 13th 2 months post op echo said 31%.  No wonder they have been so quiet about my test results ….clearly they suck!

The new tests were scheduled weeks in advance to give my heart more time for that revascularized hibernating tissue begin to function.

And now I am afraid, that all that risk, all the pain, and all the money may have been in vain.  
Exhausted, and sick and tired of doctors, tests, medical bills, and medicines. 
I just want to “pee on it and walk away”!
"Ooooo Child"   Beth Orton

Sunday, November 1, 2015

Already worrying and the week has not even started....

Day after tomorrow should find out if my heart is still going to need to have an ICD implanted.  The last time I was in the electrophysiologist’s office he was clear about his responsibility was only to the “electrical” functions of my heart.  So maybe the tests my cardiologist is doing will not affect his decisions one way or another.  An ICD is a little electrical “hickey” inserted in my chest if I am still at risk for sudden cardiac death.  It will send electrical shocks to my heart when it senses any abnormalities in heartbeat or go into sudden cardiac arrest.  I hate having surgery again, but this should be a breeze compared to what I have already been through and it will be the last surgery I will have.....already worrying and the week has not even started.


"How Can You Mend a Broken Heart"  Al Green


And this is this morning's FB post regarding stress,
"Handle stress like a dog...If you cannot eat it or play with it....then pee on it and walk away!"