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 am here to celebrate my life, to uncover my fears, to hold on to love, to grieve my losses, to laugh long and hard, and to learn how to live a full magnificent life with heart failure. I am honoring my creativity, and exploring all of my emotions out loud ...before anyone can say....."Don't talk like that!"



Thursday, November 29, 2018 does not exist without the other!

I have to admit, contrary to this quote, there have been times I discredited my own gut instinct. If I had always listened, and/or obeyed that first knee-jerk instinct, there would have been so many things I would never have done…art shows, gallery exhibits, teaching etc…etc.
…Some of those first-time instincts were screaming…wrong, failure, they are going to laugh, you are breaking the rules! But...there is an instinct that has just as much power. It is the power that keeps some directed, focused, hungry and often times willing to sacrifice anything to reach it. I suspect “instinct” or “want” or “direction” or “passion” is the magic ingredient that must be present. It is the part of your gut that sees the possible failure but is willing to risk that failure to learn. I have watched absolutely, unbelievably, incredibly talented people go on in life… but thoroughly frustrated and stuck. They have such amazing “tools” but somehow are missing the instinct or passion to risk failure to bring those talents to complete fruition. I often wonder if it is that frustration that pushes someone to turn back into a specific religion or someone else’s beliefs and immediately inhibit their own abilities to grow and develop all of their own magical potentials.

What I learned is MY GUT INSTINCT was the combination of other people’s/religion/ beliefs desires for me mixed with a very small part of my own…When I was able to separate what were my wants and needs and what were other institution’s and people’s expectations of what I should want and need, I finally began to experience my own desires and passions. So many become married to tradition and other people's acceptance, and will never understand, but some…you might know them as the great artists, musicians, mathematicians, physicists (those that broke the established rules) and so on that will continue to astound and inspire human potential and creativity. They are the evidence that each of us has that same power.  I will never discredit my gut instinct again, but I listen carefully and long enough to hear both sides of instinct... the fear and the passion..knowing they must both be present.... that one does not exist without the other!
"And Your Bird Can Sing"  The Beatles

Friday, November 23, 2018

Moon Child

I do not think after all of this time, there is anyone that does not already know how I love full moons!  They never fail to amaze me, excite me and make me feel full of miraculous energy. There are all kinds of reasons this may be, everything from some seriously scientific explanations to some really airy-fairy ones.  It really does not matter to me!  Whatever magic it is…it is significant and has been acknowledged, celebrated, entire civilizations have built around it and honored it with countless creative works.  I need no serious answers just a beautiful regular reason to celebrate life…I am a moon child…
"Moon Dance" Van Morrison

Thursday, November 22, 2018

Turkey Day memories....(aka things I have done to NOT cook on Thanksgiving!)

Long ago and far away…sometime in the early 1990s, Philadelphia, and long before I had enough smarts to say NO, I had an up close and personal experience with the Thanksgiving day parade!  Yep, me and 10 other grown-up idiots and a160 member high school marching band that my son was part of!

There isn’t a Thanksgiving….that memories do not come flooding back as one of the most harrowing experiences of my life.   160 Florida teenagers on the Philly streets at 6:00 AM in 30-degree snow flurries for a 9:00 AM parade. We were woefully unprepared, extremely underdressed and I can truly list this as among the top 3 coldest I have ever been in my life!

I used to sit and watch the parades on TV with the kids as they marched around the coffee table with my upside down pots playing them like snare drums with my cooking spoons.  It was so fun to see them march in their own parade!  It made even me, excited about experiencing the “real” thing when the opportunity arose many years later.

However, once you have been a part of the organized craziness of lining up a huge televised parade with all of those bands and floats in the worst circumstances ever…all I can say is…I now know why they invite different marching bands each year…no one…and I mean no one would voluntarily return.  It is one of those Thanksgiving day experiences that you mark up to…glad I did it..the band kids had a blast...but…this is the goofiest thing I ever did to not cook on Thanksgiving!
A thanksgiving day parade...

Give thanks doing what you do best (no kitchen required!)

There are some women and most men that have been born and survive daily without the desirable “cooking gene”. Science has not yet unraveled the mysterious set of circumstances that prevent the cooking gene from developing in the normal human being. This DNA anomaly is a lifelong condition that literally millions of people live through daily! The most glaring evidence of this condition is an irrational fear of the kitchen, followed by panic outbreaks in grocery stores and an inability to follow recipes. For those of us living daily without the cooking gene…..Cooking is another horrifying household chore, just one-step above cleaning the toilet.
You can only imagine how terrifying Thanksgiving is for women (and most men) that suffer with “NCG” (no cooking gene) of an entire annual holiday that is dedicated to cooking. Yes, they tell you that it is about giving thanks and being grateful, but that is a clever ruse. It is about cooking and eating! So where ever you are, whatever you are doing I hope you will enjoy it, do it well and give thanks in the way that you do best (no kitchen required)!

"Honky Tonk Women" Rolling Stones

Wednesday, November 21, 2018

Strategically calculated misbehavior!

This is not to say that I do not do significantly stupid stuff now, but just not quite as bad as in my teens where I could have quite possibly been walking a fine line of legality and I am not even going to broach the moral and social issues!    I cannot imagine how any young person escapes unscathed in today’s world of everyone knows everything!  My saving grace may or may not have been moving out of the area, getting married at 21 and no internet!

I left home the night of my high school graduation because I just could no longer stand the gossip hounds, busybodies, and the know it all’s of a small town.  I did not run far, but I did run to a larger metropolitan area where I was completely anonymous, there was some culture (although at the time not much, but more than where I came from) and I am ever so grateful for living in a more educated politically “blue” area….but the buggars all still have internet and misbehavior has to be strategically calculated…that is....if I do not want to get caught!
"Good Girl"  Julian Moon

Tuesday, November 20, 2018

or, in my case the "wine" person

Or in my case, the “wine” person!  Thanksgiving has never been one of my favorite holidays…well, let’s call a spade a spade…I absolutely detested Thanksgiving.  I never ever understood how me working all day in the kitchen, which I hate and am bad at could possibly be classified as a holiday…cooking, serving, cleaning and then going to work the next day…big fun…NOT! But for years and years and years, I did it with a smile on my face.  Nowadays…going out to dinner or to someone else’s home with a bottle or 2 of wine is a much much better definition of a Happy Thanksgiving! So lucky to have grown children close is a wonderful thing...and I am free of cooking Thanksgiving Dinner!
"I'm Free" Imagine Dragone

Monday, November 19, 2018

That simple...

That may explain it better than most!  Unfettered by rituals, rules, and regulations that were designed for social, political and religious structures that are thousands of years old, a spiritual person is free from the irrelevancy of archaic rules.  Free to follow their hearts and love.  It is just that simple…

"Peace be Upon Us" Sheryl Crow

Wednesday, November 14, 2018

The "what-if's"

Breathing is a good thing… 2 weeks of wheezing and hacking are finally ending!  Holy Crap!  Each time I have these fairly routine rounds of pneumonia they get harder and harder to whip!  This time it took 2 rounds of antibiotics and upping the steroids.  The great news is that I have a nebulizer (which we doubled) and Oxygen at home.  The equipment and weekly nurse visits keep me out of the hospital, and that is the best thing! Hospice is awesome!

It feels great to just feel good again and so looking forward to taking some of my life back!  On the “damned if you do-damned if you don’t” program we have decided to keep the steroids at a higher dosage.  They do seem to make my life stronger but they come with a “what if” kidney side effects down the road price and more of an immune system compromise.  But the risk is worth it!  This choice is an easy one for me (and apparently easy for the docs, too).  It is all about life NOW…having the best most productive life I can get right now…After years and years and years of the “deny pleasure, patience is a virtue, wait, save” program, it feels kind of strange to work from an opposite point of view…but it also really does feel kind of good, and I find myself wondering why I did not think this way much earlier in life, not all of the time….but more of the time… I think I would have been much happier!
"Good Life" One Republic

Thursday, November 8, 2018

"voice of reason"

Kind of what happened yesterday!  I have been struggling with a raunchy infection in my lungs, just breathing has been a challenge for more than a week now….ahughhhh!  The first round of antibiotics brought some relief but it did not take long for the symptoms to return, coughing and breathing even more difficult, and beginning to involve my head and ears this time.  When Ed came first thing yesterday morning and after the standard poking and prodding…announced your lungs are clearer, but we have a long way to go.  NO SHIT!  Dr. EVANS….me…. recommended another round of antibiotics and increase the steroids I am over this and so ready to be done.  After Ed spoke to the real doctor…we are going with more antibiotics and upping my daily steroids….yikes…following my recommendation!  Could be trouble! When I am the voice of reason....
"Die Trying" Dave Matthews

Wednesday, November 7, 2018

I am ashamed....

My heart is broken and my embarrassment is even worse. I am ashamed of Florida’s political ignorance. Mortified by the white people and money myopia, as a racist prepares to ascend to governor and Medicare con man goes to Washington, I wonder what has happened to people’s honor?  Although, how much more should I expect from the land of “The Villages”, Willis McCall and bible thumping trumpian Christians?  It does feel like am flying a whole new flavor of racism, and maybe I am.... but do we no longer hold people accountable for their actions?  I guess the new rule is to do what you want if it feels good, if it gets you what you want, blame others, lie, cheat, and steal. It does not matter if it is right or wrong.  Are honorable and decent the tenets that only apply when they are convenient?  The one thing that brings some comfort, is the Democrats became the majority of the House and it is returning the country to a 2 party system and a quote by a CNN reporter. “We no longer have a one-party rule - now there are more female, younger, warmer, browner, Muslim,  Native Americans in office.”
"Time Has Come"  The Chambers Brothers

Monday, November 5, 2018

The worst it can do is suck!

The weather is a bit cooler; I have literally done NOTHING for almost 2 weeks…It was time!  The little outside grill sits on this small counter height old table.   Years of being outdoors and having a hot “drippy” little gas grill have really taken a toll on the wood top. It seemed kind of silly to refinish the wood but some old tile, broken plates and grout put a new face on it.  Feels good to do something…even if is bad!
"Light On"  Mark Ballas
Oh...I have been playing with new watercolor crayons.....

Thursday, November 1, 2018

Maybe next time asking for help will not be so damn hard!

For my northern friends...the only way I know it is fall in FL when the
grocery store pastes construction paper fall leaves in the produce department.
And just about the time, I think maybe, just maybe I might be getting a tiny grip on what this journey and dying is about…it slips away from me.  The most magnificent friends and family have offered and have asked me to call if I need help….and I have promised that I would let them know when I need it…but then it occurred to me that I cannot let them know when I need help, because quite frankly, most of the time, I do not know myself.

So when she called and asked… I said yes…I did not want to say yes. I am afraid to need help, to give up any of my independence. “Help” to me feels like being weak, or quitting, or not being good enough.  And OMG I hate it.

But today may have been the best thing I have done in such a long time!  She picked up my groceries, the one thing I really was not supposed to do, but then she brought me homemade leftover roast beef, fresh green beans and carrots and roasted potatoes…so so good and some great REAL FALL “turning” leaves from up north. One of my “Bucket List” trips to see the leaves turn, that I screwed around and waited too long to do!  She taped the leaves to my front window and “poooof” Fall is here!…. Thank You, A….you made my day!  Maybe next time asking for help will not be so damn hard!
"Summer Song"  Chad & Jeremy