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!"
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Wednesday, December 31, 2014
Don't We All?
I have ugly questions, that they will not answer, don't we all?
If more women die of heart failure than all cancers combined, how come we do not have more press and fundraising, do you have any idea how expensive this is? Where are they?
Why do they tell you heart failure is not the death sentence it was years ago…..bull shit, it is exactly the same death sentence, they have just figured out how to make it last longer and collect more money.
Does the medical industry ever understand what we go through, how sad, desperate, and frightened we are? Will they ever acknowledge me as a person with opinions, feelings, choices about my own life?
I just want to live spectacularly and die well, I want my life to have meaning. Don't we all?
Why do they tell you heart failure is not the death sentence it was years ago…..bull shit, it is exactly the same death sentence, they have just figured out how to make it last longer and collect more money.
Does the medical industry ever understand what we go through, how sad, desperate, and frightened we are? Will they ever acknowledge me as a person with opinions, feelings, choices about my own life?
I just want to live spectacularly and die well, I want my life to have meaning. Don't we all?
"Answer" Sarah McLachlan
Tuesday, December 30, 2014
That is my job and I want to be really good at it!
Every doctor I have seen is very different but they each have had lessons to teach me.
The most important lesson I have learned is this. It was a hard lesson and it hurt my feelings but the reality is doctors and nurses do not know me or “care” about the quality of my life, they are not my salvation or my friends.
Their “care” is being paid for. Their job is to investigate and interpret my physical functions and recommend meds and treatments. I am no more or less than a paying customer, just like a customer of the phone company. I wish it were different but in my experience it is not.
I had to change my thought process. I am the only one that cares about and is responsible for me. I am the only one that knows how I feel and/or how I want to feel. The doctors and nurses are my hired professionals; my physical advisers that can help me achieve the life I want to lead. They are not the final decision makers.
The most important part for me about living with heart failure is to continue to create art, facilitating creativity in others, spending time and life with friends, family, living, laughing and loving. I cannot place my amazing life in the hands of doctors/nurses that do not really know or care about the quality of my life…..that is my job and I want to be really good at it!
The most important lesson I have learned is this. It was a hard lesson and it hurt my feelings but the reality is doctors and nurses do not know me or “care” about the quality of my life, they are not my salvation or my friends.
Their “care” is being paid for. Their job is to investigate and interpret my physical functions and recommend meds and treatments. I am no more or less than a paying customer, just like a customer of the phone company. I wish it were different but in my experience it is not.
I had to change my thought process. I am the only one that cares about and is responsible for me. I am the only one that knows how I feel and/or how I want to feel. The doctors and nurses are my hired professionals; my physical advisers that can help me achieve the life I want to lead. They are not the final decision makers.
The most important part for me about living with heart failure is to continue to create art, facilitating creativity in others, spending time and life with friends, family, living, laughing and loving. I cannot place my amazing life in the hands of doctors/nurses that do not really know or care about the quality of my life…..that is my job and I want to be really good at it!
"Blackbird" The Beatles
Monday, December 29, 2014
Holy Crap!
It is one thing to "know" or think you you know and then when you really know,
Holy Crap! This what no one sees, but I feel.
Sunday, December 28, 2014
It feels so good!
.....in pieces and parts, 36" x 48" Canvas #1 built and first coat of black…. Each nude will be mounted on top of a big solid black canvas….screwed from the back and then I will draw more so the image will flow off of the image canvas onto the black….kind of like a chalk board….well that is the theory anyway….stand by! Banging, building, stretching, and painting I cannot remember being this challenged and tired in a very long time….Oh boy it feels so good!
Gonna’ keep on, yes I will, if for no other reason….it feels so good!
"Yes I Will" Michael Franti and the Spearheads
Vulnerable.....
Whew…the big ones! They challenge me artistically, emotionally and for the first time in my life they are challenging me physically. I used to build these canvas stretcher bars and stretch my own canvas without a problem, easy deal, no sweat, piece of cake….not that I am having a “problem” but it sure is slow going, this is where I find out just how committed I am to the art….to the work…I am an artist, I know vulnerable, this is just a new side of vulnerable that I have never had to deal with before. I am an artist….this new vulnerability just makes me more beautiful!
Are you believing that?
Me neither….back to building!
"Why I AM" Dave Matthews Band
"still here dancing with the gru-grux king!"
"still here dancing with the gru-grux king!"
Friday, December 26, 2014
Very Very Real
"Confronting Congestive Heart Failure,
Putting a Positive Spin on Fighting CHF"
Putting a Positive Spin on Fighting CHF"
That is the group I belong to. The first support group I have really been a part of. I have joined others, but after a few days or meetings, it was clear that they were big fat whiners. Almost like a stupid competition of who had the biggest scars, took the most medicine, or had the worst doctor. Nothing could have been more depressing or unproductive. I have avoided them like the plague, until this group. They are real, there are real discussions, questions and answers, for the most part they are all incredibly brave and positive about life, committed to not letting this disease consume their lives and very insightful. I have only been a member for a couple of months,but this week we lost a group member. He died, he died of heart failure. I have known for quite some time I will die of this, this week it became very, very real and sometimes I am very scared.
"Road of the Heart" Ann Reed
when something happens to me,
they should be told, they would want to know
when something happens to me,
they should be told, they would want to know
Are You Watching Over Me?
Thursday, December 25, 2014
The Spirit of Phoebus
The Phoebus Ring.
The ring was my grandfathers, William T. Phoebus. Carved into the stone and built up on the sides in silver and gold are tributes to the Greek God Phoebus. Phoebus is the god of Light, Prophecy, Music, Poetry, and the Arts and Sciences, and is by far the noblest conception of Greek mythology. He is the god that pulls the sun (light) across the sky every day in this chariot.My grandfather died at 45 from an unexpected heart attack, a connection that I never expected, but a connection that only I share with him. I never knew him but I remember asking my grandmother about his ring she always wore; it really was a large awkward ring for her delicate fingers. She would always tell me a story about my grandfather and end every story with, the ring was his and a part of his family history, and that she was then and always would be a part of that history. When my grandmother died my mother fell heir to, and wore the Phoebus ring, she and her father had the most spectacular relationship I think I have ever known between a father and a daughter. In Sept, of 2006 she gave the ring to me. To give up her father's ring was more than any typical act of giving. It is one of the most amazing gifts I have ever received.
Unfortunately at its age and significant daily wear, some of the prongs had broken off and the stone was very loose. Several different retail jewelers refused to make the repairs, I suspect because of its antiquity and liability issues. So for 8 years it has been put away, only worn on special occasions for fear of losing that irreplaceable carved stone. My dear friend, Terry, happened to run into an old friend of hers, a jeweler and in the course of their conversation the Phoebus ring came up. He told Terry it might be fixable, he would like to see it. I met with him 8 weeks ago and yesterday (Christmas Eve) I got back the Phoebus ring, beautifully repaired and cleaned.
The ring is a part of my family history. It will be my every day reminder that I am infused with the spirit of Phoebus and part of the Phoebus family history.
"Family of Srtangers" Ann Reed
Yes Cheryl, There is an "Enchilada Eve"
Yes Cheryl, There is an "Enchilada Eve"!
15 Years ago in a turkey/ham holiday revolt we opted to have Enchilada's for X-mas Eve dinner. Evans' Enchilada Eve is an irreverent tradition at our house and we love it! This year after 3 busy days with my grandsons in addition to all of the other wonderful Christmas activities I was pooped beyond belief, I mean way beyond the typical power through it anyway "pooped"! I had to let go of Enchilada Eve. The spirit was more than willing but the body was staging a full on strike. I was heart broken literally! But a last minute wonderful surprise when Darren and Jill made Enchiladas tonight....Christmas Eve 2014. Well it may not be as spectacular as a big star in the East but, but it was indeed my very own Christmas miracle. Thank you!
Tuesday, December 23, 2014
The closer I am to fine....
And…let’s not share this with my insurance company!
The question is how much of our life is decided long before we arrive. I want spiritual acceptance for what is happening to my body, I want to live with a whole heart, to contribute my unique gifts to the world or the people that need them the most and that my body is well spent then I feel like my spirit will live on well loved and closer to fine!
The question is how much of our life is decided long before we arrive. I want spiritual acceptance for what is happening to my body, I want to live with a whole heart, to contribute my unique gifts to the world or the people that need them the most and that my body is well spent then I feel like my spirit will live on well loved and closer to fine!
"Closer to Fine" Indigo Girls
I'm trying to tell you something about my life, Maybe give me insight between black and white
The best thing you've ever done for me, Is to help me take my life less seriously, it's only life after all
Monday, December 22, 2014
CupCakes for breakfast!
YES......at Nana's House we have cup-cakes for breakfast!
Celebrating birthdays past and to come...and getting an early start on a big birthday shopping day!
I know, I know I can feel their parents cringing from 90 miles away, but I warned them that my job as a Nana was to do all those things that they are not allowed to do at home and then......
send them home.....Bwa-ha-ha-ha!!!
Celebrating birthdays past and to come...and getting an early start on a big birthday shopping day!
I know, I know I can feel their parents cringing from 90 miles away, but I warned them that my job as a Nana was to do all those things that they are not allowed to do at home and then......
send them home.....Bwa-ha-ha-ha!!!
Sunday, December 21, 2014
There is a Fine Line.....
...it just never lasts very long!
please take note of who is NOT in the second photo and you will understand the second picture.
please take note of who is NOT in the second photo and you will understand the second picture.
"I Farted on Santa's Lap"
Saturday, December 20, 2014
It is What we do...
There is something indescribably magic about like-minded creatives and a fire (of course a little wine does not hurt). There is a spirituality that is present with creatives and fire that none of us really understand but....it is there. It is there in the stories that spill out, there in the sadness and failures that we throw into the fire to be consumed, there in our desires that are cast into the fire and carried immediately up and out to the universe, we all know there is something beyond our understanding
there and we celebrate it!
"for Good" Idina Menzel
Friday, December 19, 2014
Counting stars
Because she knows!
She knows how lucky she is to have so many incredible stars in her
sky!
I am always counting my stars!
Thank you!
Thank you!
"Counting Stars" Guardier Sisters
Thursday, December 18, 2014
on the other side
Creativity is my God/prayer. You may not understand it, and that is is just fine, because I do not understand it either.
I do not think any of us are capable of truly experiencing God on this side of the grave. Humans have been trying to do that since the beginning of time and we are no closer to an explanation than we were thousands of years ago, infact we are still telling the very same stories. I think we all get little glimpses of what God might be but none of my glimpses match what I have been told about this God or other Gods.
I do not think any of us are capable of truly experiencing God on this side of the grave. Humans have been trying to do that since the beginning of time and we are no closer to an explanation than we were thousands of years ago, infact we are still telling the very same stories. I think we all get little glimpses of what God might be but none of my glimpses match what I have been told about this God or other Gods.
So, I will wait. I know in my heart that all of this will be lovingly revealed to me on the other side of the grave, after I release this life, the emotions and all of the limitations of living. For right now, I will happily practice creativity, that is where my little glimpses are.
"Phenomenal Woman" Ruthie Foster
I have decided to be happy...
I cannot always change my surroundings. I cannot always change what is happening to me. The only
things I get to change are my thoughts and my attitude. No one can control that; no one can take my thoughts from me. They are mine and mine alone. Happy, sad, grief, love I own them, all of them, they are mine, I am rich beyond belief with emotion and I do not relinquish control of any of them to someone else. They are mine, I choose! I have decided to be happy!
"Time of Your Life" ortoPilot
Tuesday, December 16, 2014
They did not say anything about a straight line!
Good thing I draw lots and lots of lines. None of them are straight! The older I grow the more I wonder about morality. Who decides what is moral and what is not, why and when? My morality is based on what I feel in my heart, it is that simple! It may be right or wrong, it may be good or bad in other’s eyes….but in my life, it is simply what I feel in my heart. It will never be a straight line and my heart is what I have to live with.
"Change" Blind Mellon
"Change" Blind Mellon
"they'll all look at me and they'll say, Hey look at her and where she is these days.When life is hard, you have to change"
Oscar Wilde
Monday, December 15, 2014
Thinking about death....
We (me, doctors, friends, family) do not talk about death…
Perhaps that is why it took me so long to explore these thoughts, but when I
finally did, I found a comfort and clarity that I did not expect. As I struggle to come to terms with death, I
am surrounded by a comforting peace that reminds me of my place in the world. In
the big picture, death reduces the mundane things that stress me out and puts
them in perspective. The love, the people, the places, the experiences and all
of the things that matter most to me become big and crisp again. … Thinking
about death does not scare me, it clarifies my life.
"Better Off Now" Trent Dabbs
Saturday, December 13, 2014
Sometimes the music says it so much better....
"I Lived" One Republic
Hope when you take that jump You don't fear the fallHope when the water rises You build a wall
Hope when the crowd screams out They're screaming your name
Hope if everybody runs You choose to stay
Hope that you fall in love And it hurts so bad
The only way you can know Is give it all you have
And I hope that you don't suffer But take the pain
Hope when the moment comes You'll say...
I did it all
I owned every second that this world could give
I saw so many places The things that I did
Yeah, with every broken bone
I swear I lived
Hope that you spend your days but they all add up
And when that sun goes down hope you raise your cup
I wish that I could witness all your joy and all your pain
But until my moment comes I'll say...
I did it all
Hope when the moment comes You'll say...
I did it all
I owned every second that this world could give
I saw so many places The things that I did
Yeah, with every broken bone
I swear I lived
Hope that you spend your days but they all add up
And when that sun goes down hope you raise your cup
I wish that I could witness all your joy and all your pain
But until my moment comes I'll say...
I did it all
"I lived" One Republic
2014 Professional Artist Magazine Art Mentor Finalist....Woo-Hoo!
I am honored and touched beyond all words! Thank you Shirley Fox for this incredible nomination and thank you Professional Artist Magazine for an honor that I am overwhelmed by. Encouraging and helping emerging artists realize their unique and individual potential is the love of my life!
"Thank You" Dido
Wednesday, December 10, 2014
Tuesday, December 9, 2014
I created something...
is what keeps me alive.
It is why my heart beats, why my soul grows
and it is my way of making life bearable.
I sing off key with head phones on.
I dance dreadfully in the studio with no one
watching.
I write using horrendous grammar and atrocious
spelling
(even MS WORD is baffled!)
For every “good” picture I draw or paint,
for every mask or figure I sculpt
there are at least 15 that are embarrassingly bad!
Good or bad, at the end of the day, I can say
I created something...I lived!
More than a daughter, woman, wife, mother, sister,
or friend
I am a
creative.
"You Might Die Trying" Dave Matthews Band
If your give, then you begin to get the world"
Monday, December 8, 2014
Step Away from the Easel!
"Morning Girl" Neon Philharmonic
I do not owe....
Neither can be taken away from me. I foolishly believed I owed my life to
someone else, that was how it was supposed to be. I thought my freedom came from anothers love,
respect for my independence and trust. I
was wrong, I have grown up, opened my eyes to things I never really wanted to
see.
My freedom comes from me, It is my wild heart and my gypsy
soul that make me whole. I do not owe
anyone for my life."Dust to Dust" Civil Wars
Sunday, December 7, 2014
White Lies
Some days are better than others….and I am finding the “other“ days are getting harder and harder to get through. I always believed that gratitude would get me some tough times. I am still learning to focus on all the good things in my life with amazing gratitude and when that doesn’t work there are always white lies!
"White Lies" Paolo Nutini
Saturday, December 6, 2014
Boundaries
I think there were times earlier in my life, and everyone’s
life for that matter, that some “forcing” and failing is necessary. How else do we learn what and where our
boundaries are? But there comes a time
that enough is enough. I am not
advocating that I quit, but that forcing and/or failing from this point on will
be a chosen experience, I know what and where most of my boundaries are.
"Better Off Now" Trent Dabbs
Sometimes the lyrics say it so much better than I can.
So easy to hurt, so hard to forgive and there's no getting over the people we've been but it sounds like a question, when we say "this is it" won't you stay around, tell me that we're better off now wait it out tell me that we're better off now, we're better off now
From the first time we heard this, we were quick to believe that light on the surface, was dark underneath knew enough to be nervous, but we just couldn't quit stay around, tell me that we're better off now wait it out, tell me that we're better off now we're better off, better off now
let's say that the sun might show up here tomorrow and we could go back to that place let's say that the sun might show up here tomorrow and we will find the love we misplace just tell me that we're better off now just tell me that we're better off now stay around tell me that we're better off nowwe're better off now better off now
Thursday, December 4, 2014
life, love, art, heart failure and assorted ramblings 2014
each year.... I publish the posts from my blog that were the best part of my growing, the biggest AH-HA's and the worst disappointments. These are some of my greatest life lessons. It has been a magnificent year
"All Star" ortoPilot
Wednesday, December 3, 2014
Finding purpose through play!
New Box of color experimenting with blocks of pure pigment that you can draw with, use as a watercolor or water soluble crayons. They are bizarre to hold when drawing with them, but how freeing that is in addition to adding color and paint feeling to sketches. I am still exploring basic poses for the Nude-Nite ....I need to get busy, but oh my I am having so much fun dancing and playing in the studio!
"All About That Bass" Meghan Trainor
yes, that is a purple bottle of bubbles back there...sometimes inspiration needs a little help
No Fear....
"Bubble Toes" Jack Johnson
Tuesday, December 2, 2014
Who am I Kidding?
Instead of getting smarter, each new situation makes me grossly aware of just how much I DON'T know.
Shouldn't I be getting wiser in my old age?
Shouldn't I be getting wiser in my old age?
What has happened to the years of experience I am supposed
to have?
Will I ever figure it out?
And exactly who decided I was supposed to figure it
out.
"Follow Me" Uncle Kracker
Monday, December 1, 2014
Yes I will...
There are so many different beats that will wake me
from my everyday hibernations. I am always
looking for the rhythms, the textures the lines, the movements that will make that connection.
Yes I will allow myself to be rocked by connection,
passion, excitement and fearlessness hoping that something much greater than me
will propel me heart-first into my now then move me even higher by doing, by
being and by trusting me.
Yes I will surrender to
the strongest pull I know, the primal desire
to create.
I know in my heart it will never lead me astray.
It will bring
me home,
Creating will bring me safely home.
Yes it will.
"Yes I Will" Michael Franti
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