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!"


.

.

Tuesday, December 20, 2011

Who is and Who is Not in Denial

They claim I am not accepting the reality of the situation. The nurses/doctors have politely accused me of denial. I have made some difficult choices and clearly spoken my choices over a great period of time, they just do not want to hear….Leading me to wonder exactly who is and who is not in denial.

Thursday, December 8, 2011

My Greatest Good!

I am on a magnificent journey! Joy, pain, love, and fear all bring me closer to achieving a life of meaning and I receive them all with open arms.
Everything happens for my greatest good!

Letting go of Ego

There is so much peace in letting go.
The more I let go, the more energy seems to be available to me!
I sure wish I had learned to do this a long time ago.
I am not letting go of life, I am letting go of a parasitic ego,
and seeking the abundant happiness and wisdom that has always been here waiting for me.

Wednesday, December 7, 2011

Being Busy...It is a Wonderful Thing!

Black Tails & Tennis Shoes (who but one of my sons?)
Between end of semester research papers and making hundreds and hundreds of handmade paper flowers for Jason and Stephanie's wedding, I just have not had much time to write! Is'nt it great! Most of the pictures in the video were taken by my most awesome 8 year old grandson, Oliver. He did a fantastic job! The song "100 years" was chosen by Jason for the Mother of the Groom/Groom dance and I cried like a baby! Stephanie's father is not with us and she chose instead for her first dance to be with all 4 of their children to the "Banana Splits"!
What a wonderful happy day!

Sunday, November 20, 2011

There Will Be NO Cooking!

When I turn on the TV there is at least one cooking show on every minute of every day on some channel and it is portrayed as a fun and fulfilling experience that can satisfy your need to be creative and keep the family well fed and healthy.

My response to this latest entertainment trend is BULL $#!+! Where is the cooking program for the “I Hate to Cook” people? Where is the station that promotes the 3 ingredients or less recipes?

This year I am not celebrating Thanksgiving in the traditional way! I will indeed be giving thanks, but not by using every pot & pan in my tiny kitchen, cooking 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, 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 what ever family (or friends) are interested in spending time together, eating convenience foods and being grateful for all the blessings of this life.

There may be creative conversation, or funny stories, or painting, or parade and football watching.
But....there will be no cooking!

Wednesday, November 16, 2011

Important Things


Maybe I scare them?
One day...
I suspect they will see
How silly most of this life is and
How simple it really was to focus
on the important things.

Saturday, November 12, 2011

Without Permission…

Taking my power back has been the most significant healing thing I have ever done for myself. Taking power back may be a new and difficult concept for some, but once you have it, it is a great thing that you will never let go of!

In the past I felt like I did make up my own mind, but I have learned that realistically I was so afraid of making the wrong choices that I culled opinions, listened to doctors/nurses and pled my case for public consensus before making a decision. I critically weighed all input, (seldom listening to my own heart) before making any major decision. In most cases I went with popular opinion or what the “biggest” expert recommended, and then grieved and doubted my decision. Each little choice kept me questioning myself and my own judgment wondering it I have done the right thing, and what will happen if I didn’t.

Not once did it occur to me that my real power comes only from listening to my own heart and my body.

I trust myself, I am perfectly willing to make mistakes and learn from the consequences associated with my decisions.

I am taking my power back, without permission!

Saturday, November 5, 2011

Self Worth Comes from Within…

Well, that’s what the self help gurus say. What they fail to mention is how to go within and get it! They offer up gratuitous examples of how we lost our self worth, but no lessons or models of how to get it back. I chronically hear their eloquent declarations that it “comes from within” with the typical recommendation to regurgitate painful past experiences along with affirmations then reach up in there and whip out some self worth on command. They make it sound like it is as easy as finding a set of misplaced car keys with an electronic buzzer. Clap your hands, listen for the buzz, and follow the sound to the misplaced keys.
Self worth is not that easy.

In my case, mix some long term self worth issues, a terminal disease with the current bureaucratic red tape of the medical/Medicaid system and it creates the perfect no self worth storm. On the other hand, the only thing that I am absolutely certain of is that compared to what some other’s deal with on a day to day basis, my self worth issues are no more than a spit in the wind.

Self worth is just not important anymore.
I have opted for gratitude.
I am grateful for all that I have, all that I have had and all the wonderful opportunities to come. Gratitude does not require an excruciating walk through past painful experiences or chronic repetition of affirmations. I really do not want to waste anymore of my amazing life in a desperate pursuit of the egotistical concept of self worth when my heart is full of gratitude now?

I prefer, gratitude, simple gratitude.
Gratitude is easy.
Thank you!

Sunday, October 30, 2011

Miss You Dearly...

It is a sad evening, and I just cannot seem to hold back tears any more as I feel 2 people that I know and love slip out of my life, one by choice and one loosing a long battle at the end of a wonderful life. As much as I hurt and want to go back in time, I know that cannot happen. I hope they will know how much more wonderful my life has been because they have been in it. I am grateful and wish you well on your next journey. I love you and will miss you dearly.

Wednesday, October 19, 2011

I want to...

I want to really really live.
I want to laugh til my stomach tightens and my face cheeks ache.
I want to cry from my heart and let the tears wash me to where I need to go.
I want to feel the music and dance wildly.
I want to love so deeply that even my cells quiver.
I want to know that I'm worthy
i want to leave fear way behind me.
I want to fall to my knees in gratitude for this gift of life I have been given.
...I know what a gift it truly is.

Monday, October 17, 2011

If I Could Trust

I have been afraid for so long now,
the idea of trusting myself seems foreign....
if I could trust...
if I can just trust myself and my body-
I just might learn how truly powerful I can be!

Tuesday, October 11, 2011

See me?



Why can’t I see me?
Why am I still chasing my purpose and asking why am I here?
Why can others see me more clearly than I can see myself?

Sunday, October 9, 2011

Recognizing My Strengths!

How many times have I almost crumbled to the ground? It is time to stop, I am looking at how far I have traveled and all it has taken to get here, and recognize my strength. The strengths I have always had inside and the strength I’ve gained along the way. I am standing up, standing tall, facing forward, and gratefully continuing on.

Thursday, October 6, 2011

Saturday, September 10, 2011

With My Whole Heart

Golda Meir said “those who do not know how to weep with their whole heart don't know how to laugh either.”

I keep reminding myself that this is a balancing act. Surely the bad scary days will be equalized by great, full, and wonderfully creative days.

I have already cried….

Tuesday, September 6, 2011

If I Ignore Fear?

I have an abundance of fear.
It is always hanging around me.

I’m grossly aware of it,
its heaviness,
its constancy.

There’s something in it that forces me, on what may be a spiritual level to consider that maybe, just maybe, it is a gateway to breakthrough, to blinding beauty, to realities yet un-imagined.

If I ignore fear, convince myself that it is irrational, pay no attention to its power, its message, its beckoning, will I miss something important; something true?

Could fear be what grounds me and draws me into the raw truth of life?
Can fear be not only important, but worthwhile?

Thursday, September 1, 2011

Unexpectedly Weird

Unexpectedly weird is being blindsided by an emotion I never saw coming. Today I got one of those awesome “parking passes” you know the one? The blue tags that hang from the rear view mirror and let me park close to the grocery store door. Those are the parking spaces I have coveted all of my life, so I thought I would be absolutely ecstatic, finally I get the good spots!

The lady at the tag office pushes the parking pass across the counter, I loose my breath and all I can see is those huge horrible big white letters screaming at me (disabled). No grouping of letters has ever been this unexpectedly offensive to me.

Hoping the primo parking spaces will make up for nasty label I feel like I am now wearing.

Tuesday, August 30, 2011

I Did It!

Have you ever had a day that you worked, struggled, and grappled all day long, to simply maintain normal?

You know the ones that begin like any other regular day and quickly degrade into total chaos, where problems unfold one after the other with absolutely no warning and no time to catch your breath between them?

A day like yesterday!

And when the incredibly horrible day was finally over…I felt like I should regale each and every catastrophe, whine about the unfairness of it all, and then blame and complain to anyone that would listen. After all, that is how I had always done it before.

But surprisingly I find myself simply wanting to celebrate. I made it through a really crummy day, with all of its challenges, I figured it out, I fixed it, and I did it!

Woo-Hoo me!

Sunday, August 28, 2011

What if

What if...

Doctors could see me
instead of my disease or finanacial status,
saw symptoms as a language,
my body’s very intelligent way of communicating,
saw themselves primarily as healing facilitators,
instead of disease managers,
and
understood that I have more power to heal me,
than all of the medicine they posess?

Thursday, August 25, 2011

"Your Time is Limited" by Steve Jobs

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” ~ Steve Jobs

Healing

Healing does not mean curing. Healing does not eliminate disease or distress. Healing applies to me as a whole, curing only applies to a disease. If my life becomes identified by a disease it leads others to assume there is something faulty in this situation. Maybe this is why I detest doctors so much and shy away from people that love (feel sorry) for me, they only see me as a disease, incurable and faulty.

Maybe incurable, but definitely not faulty or capable of healing!

Monday, August 22, 2011

I Know What is Possible

Peace is available to me when I quit spending my life trying to reconstruct the past or manage the future. What is here NOW is so satisfying, so loving, and so unbelievably simple that once tasted, it changes everything. Now that I know what is possible, I cannot allow myself to settle for anything less.

Saturday, August 20, 2011

What Do I Do Next?

Itchy to do something but I cannot figure out what!

Maybe it is an overload of HGTV (we just got cable) and think I should be creating some incredible piece of furniture out of someone else’s cast off. Then after a few episodes of “Hoarders” I am looking at my studio from another point of view. Wonder if they will send one of those big “Got Junk?” trucks to my house?

Artist’s Way Classes have ended, the exhibition is hung, the opening has successfully happened, and the grandchildren have come and gone home.

It is not that I do not have a ton of things that need to be and should be done, it is a question of whether I want to do them!

I am having an attack of “What do I do next?”



3 days later.....
HGTV won out and I ended up at the Habitat Re-Store buying then cleaning up and painting porch chairs! While out on the patio I attacked by a seriously pissed off mosquitto, Now I really am itchy!

Tuesday, August 16, 2011

Correct + Safe + Certain = Scared

I don’t get to know what will end when.
I don’t get to know how long things will last.

I can play the odds;
align myself with the correct probability for maximum longevity, comfort, and ease.
Or I can focus on the possibilities that excite me and enjoy the journey.

I can choose the path of safe minimal loss and change;
Or I can get clear about what I want to do now,
and passionately embrace the unknown, figuring out the way as I go.

I can choose a group consensus, support, and medical assistance but even that is not certain.
Or follow my heart! (I am full of power when I follow my passion!)

The irony about choosing the path that seems correct, safe and certain is that it only guarantees one thing:

I will go through life wondering how things could have been
if only I wasn’t so scared.

Thursday, August 11, 2011

All I have to.....

All I have to know
is that there will always be secrets.

All I have to understand
is that this is all they know how to do.

All I have to recognize
is that there will always be rationalizations.

All I have to do
is consciously choose not to participate.

All I have to learn
is how to let this go.
no more, no more

Sunday, July 24, 2011

Celebrating 40!

Sloshing around a disease whose logical progression is always down; there are no words that can express the little victories that occur when test results show that my heart has improved! From an original 15-20% Ejection Fraction a year and a half ago (how much blood my heart is able to push out with each beat) to an amazing approximate 40% is a miracle! I am celebrating!

Thursday, July 21, 2011

Uncertainty

For someone that felt dependable when it came to keeping commitments (one of the few things I felt I was really good at!) this sudden uncertainty for me to make good on all of my plans is a source of tremendous anxiety and stress. Although I rarely feel 100%, I do, like most chronically sick people, have days that I function better than others. I just cannot predict what days those will be. As a result I end up feeling absolutely miserable when I make plans for a certain day and am just unable to follow through. Uncertainty sucks!

Saturday, July 16, 2011

Pre-programmed

How many of my expectations and reactions are actually mine, and how many of them are preprogrammed emotional responses from parents, church, school and generational social standards?

There are big issues in my life that have made me grossly aware of pre-programming but they have also provoked some serious thinking and major changes. Unfortunately, no matter how aware I am of pre-programmed negativity, there are still times that little bits of bizarre behavior or snap judgments continue to slip through. Every now and again, I find myself reacting to a situation or drawing a conclusion based on ugly pre-programmed information from my past. After the situation has unfolded I realize that my reaction was not how I would consciously choose to react and it is very scary!

Simply being aware of this does not always seem to be the best way to control the pre-programmed negativity that creeps into my consciousness without my permission!

For now, the best I can do is be aware of my unrealistic expectations and reactions, take the time to investigate where these feelings are coming from, and then decide are these feelings really mine.

Am I mimicking others reactions because it easier to do than coming up with my own?

Friday, July 15, 2011

Conserving Energy

Last month the heart failure clinic taught me a host of little physical “tricks” to conserve my energy.

I needed it! I have allowed so much of my life energy to be wasted on negative emotional energy created by the medical industry’s inefficiencies.

Each medical entity (doctor’s office, testing lab, hospital, Medicaid, etc.) appears to work well within their own system. The negative issues seem to crop up when they have to work together. The medical industry is incredibly compartmentalized and critical communication is disturbingly absent.

Tests had been ordered and authorizations requested weeks ago, but the authorization requests have been ignored. Perhaps the strategy is, if they ignore me, I will go away. Maybe I should ignore the pre-recorded telephone appointment reminder to assess the test results they requested that have not been authorized or done.

This is not the first time I have been to this rodeo; you would think I would be used to it by now, but I continue to waste my precious energy on them. In my heart I desperately want them to care.

I cannot afford the luxury of thinking that my life is important to them, clearly it is not.

I cannot allow them to destroy the energy I have learned how to conserve or take away the joy and gratitude that my heart naturally has!

Tuesday, July 12, 2011

Almost Worth it

I find it interesting that my entire life I feel like I have been struggling to be regular.

I always tried to fit into a "do not stand out", "look like everyone else", and "do not be different" world. I struggled to be a regular sized person, with a regular house, driving a regular car, with 2 regular children. Every day I did not measure up (which was just about every day) I felt bad about me.

Now… I have the nerve (or finally and more accurately do not care what other people think) to do and be the Cheryl I should have been all of my life.

So for those that have a need to feel sorry for me, DON’T this freedom is almost worth the disease

Wednesday, July 6, 2011

The Official List of “I Hate it Whens”…..2.0

Recent experiences have provoked another obnoxious list of experiences brought about by an outrageous, unreliable, dysfunctional, uncaring medical industry!

I hate it when…
I have to wait more than a year for test results to migrate from one doctor’s office to another. The offices are less than 20 miles apart.

I hate it when…
Those tests finally arrive and they suspect some are wrong, some are still missing information, and others detect a problem no one knew was there.

I hate it when…
I have to make an appointment to see a brand new (non-specialist) Primary Care Physician to get an approval to see the specialist I have been going to for over a year.

I hate it when…
The doctor’s waiting room has a piece of paper taped to the wall that says “This office WILL NOT give test results on the phone. It is the patient’s responsiblity to call the office and make an appointment to discuss test results.” Then the doctor writes orders to repeat and conduct 4 more ridiculous unnecessary tests. I have an extremely urgent need to post my own piece of paper on his waiting room wall!

I hate it when…

medicine makes me sick, I can do that all by myself, thank you. I do not need help!

I hate it when…
doctors, nurses etc. do not give a rat’s rump what my name is. Even the lousy phone company customer service rep will ask me my name.

I hate it when…
I appreciate anyone in the medical field that will just pretend to care as much about my heart as they do about my financial status.

I hate it when…
I am tired all of the time, it really sucks!

I liked it so much better when I did not go see doctors!
Why am I doing this again?

Monday, June 20, 2011

Things That Scare Me

All of my creative life I have limited myself to 2 dimensions it was just easier for me. Last year in the company of some wonderful friends in the AW lunch & learn group, I was cajoled into trying concrete sculpture. YIKES! First time ever working in 3 dimensions, and so very different! Three dimensions came up again, accidentally when fooling around with clay when some very interesting scary emotions erupted through my fingers. It was surprising! I have played around some more and more and more, and now this 3rd dimension is turning into real play!

I am learning to play with the things that scare me.
and....the less sense life makes the less sense my art makes, hmmmmm?

Wednesday, June 15, 2011

Doctors are Whipper-Snappers!

"Doctors are whippersnappers in ironed white coats
Who spy up your rectums and look down your throats
And press you and poke you with sterilized tools
And stab at solutions that pacify fools.
I used to revere them and do what they said
Till I learned what they learned on
was already dead.”

Gilda Radner

How great it was to find someone else feel the same way about doctors! I am not alone! Atta girl Gilda!

Tuesday, June 14, 2011

Shoot First! Then Draw the Target.

I obviously learned this lesson a little late, but not too late!
And here is the other big lesson learned, the targets I had always “shot” for in the past were not even MY targets.
Who knew I got to draw my own target?
Caution!
The shooting has begun...
the target drawing is still underway!

Friday, June 10, 2011

At Any Given Moment






I am overwhelmed at how difficult this thought has been to communicate to the medical industry. I appreciate all of thier efforts, but not to the exclusion of my wishes.

Art & Healing

Each of us has deep within us an inner artist and an inner healer.

The inner artist is the part of me that is passionately creative, that feels love, that feels connected to everything around me, that can see, that knows who I am, that I am at home, and at peace. My inner artist can go anywhere in the inner world. No place is closed to me.

The inner healer is the part of me that balances my body perfectly. It re-sets my heart beat when it gets out of sync. It keeps my blood flowing. It takes away my pain and shows me where to find joy. Art frees the healer within.

Art frees my spirit so my mind and body are in harmony. Art helps me conquer this disease by freeing my inner healer to work at its optimum.

Wednesday, June 1, 2011

Resurrection Fern


I am the proud owner of a fiesty clump of resurrection fern. I did not buy it or do anything to encourage it but here it is strategically situated in the maple tree just outside my window.

The UF web site describes this peculiar little fern as an air plant that attaches itself to other plant for nutrients. “The resurrection fern gets its name because it can survive long periods of drought by curling up and appearing dead. When just a little water is present, the fern will uncurl and reopen, appearing to resurrect. This tiny plant has even been taken on a space shuttle mission to watch it resurrect itself in space!”

I sat this afternoon after a welcome rainstorm and actually watched my little clump of brown curled fronds open up and change colors. It was AMAZING!

Gonna find me some of that water!

Sunday, May 29, 2011

If the Hopers Only Knew!

"There is a secret medicine given only to those who hurt so hard they can't hope.
The hopers would feel slighted if they knew."
— Rumi

I thought only I felt this way. It seemed so preposterous and undocumented that it certainly could not be so. Then try explaining this marvelous "secret medicine" theory to your friends and family (the hopers)!

In my heart,
I have always known,
I can feel it...

Friday, May 27, 2011

Bitch Moan Cha-Cha-Cha!

I try very hard to balance and maintain a realistic yet positive grateful attitude. However, there are times that a good bitch session seems to be in order so if you are new to my blog just hang in here; the posts are not always so grouchy. But, I thought I should give you fair warning!

Summer… While the rest of the country celebrates Memorial Day and the eve of summer with baseball, outdoor picnics, and fireflies, here in Casselberry FL we already have oppressive heat, outrageous air conditioning laden power bills and bloodthirsty mosquitoes. I am dreading another season of blistering the back of my legs from hot car seats, stinky sweat, and sticky humidity. Summer in Florida drags on and on for approximately 8 months, with fall, winter and spring sharing the remaining 4 months. It is a long hot prickly, itchy and expensive time of year that is best spent indoors and certainly nothing to celebrate!

And the cha-cha portion of this rant… I know I am about to get a universal boooooo, but thank goodness Dancing with the Stars is OVER. Not that I am looking forward to another riveting summer of reruns or another nail biting season of the Bachelor (ette) but I am thrilled Dancing with the Stars is done! I do enjoy watching the dancers but for every 45 seconds of dancing we have to endure 10 minutes of blathering commentary and vote solicitation. Then, as if that is not bad enough I get Dancing with the Stars, notifications served up with the morning news. Really….is this news?

As I proof read this latest grouse, I must confess, if this is the extent of my current complaints, I really am living a charmed life and am blessed in so many ways!
Woo-Hoo!

Friday, May 13, 2011

Gonna' Pull Up My Big Girl Panties One More Time

Gonna' pull up my big girl panties and deal with it one more time, another trip to the heart failure clinic.

Hoping this time there will be some answers, good or bad, I just desperately need answers!

Tuesday, May 10, 2011

Friday, May 6, 2011

As Long as I am Creating....

The only unique contribution that I will ever make in this world will be born of creativity.
If I want to make meaning, I need to make art. write, draw, doodle, paint, take pictures, collage, sculpt, dance, decorate, sing—it doesn’t matter. As long as I am creating, I will have meaning.

Wednesday, May 4, 2011

Finishing!

Final case study research paper is finished and turned in, one last algebra assignment and my brain gets a well deserved vacation.

I love finishing!

Finishing is a delicate mixture of satisfaction and surrender. Finishing demands I let go of expectations and surrender to the uncertainty of what comes next.

Surrendering is embracing the now, rather than clinging to what used to be or what might be.

It means for a little while, I just get to be.

Sunday, April 17, 2011

What More Could I Say?


The greatest BD gift from sister Kelly and perhaps inspiration for a tatoo on my chest before the next doctors appointment!

Saturday, April 16, 2011

And…Life Goes On

Dealing with these big health issues has made me recognize the value of the little everyday things.

Shortly after diagnoses, I would get absolutely indignant when the phone bill would arrive in my mail box. Didn't they get the memo that I have terminal heart failure. I have no time for this unimportant day-to-day business? Don’t they understand that I have much more important, life altering, philosophical matters to attend to?

The next day the water bill would come.

Regardless of my circumstances the relentless flow of life continues, the grass/weeds still need mowing, dishes have to be washed, the floors need mopping and Progress Energy is serious about their “cut-off” date.

It is a humbling experience.

Life does indeed go on, and most of it happens in these everyday things.

Happy Birthday my heart, we have a lot of everyday things to do today.

Thursday, April 14, 2011

I feel like cr-@#p!

The one insidious understated, overlooked symptom of heart failure is this overwhelming crappy feeling. The one where I feel like a swollen slug that just wants to crawl under some wet leaf and sleep. And sleep. And sleep. And sleep. Trouble is, when I am in these funks, no matter how much I sleep (and I can sleep until my jammies feel like they are permanently stuck to my skin) I just can’t seem to get enough. I wake up just long enough to take a bite of something already partially eaten, sip some warm tableside iced tea, wriggle my toes to get some blood flow reestablished and go right back to sleep.

I am learning to accept feeling like crap. But when I add this crap to the already top-heavy pile of psychological baggage this disease has created my life begins to resemble the teetering back of the Clampett’s truck on the way to Beverly Hills.

So, I’ll be the one in the rocking chair perched on top of that heap… sleeping.

Saturday, April 9, 2011

So, for my next trick…I will have a little rant!

I have had a marvelous week, feeling better than I have in months. So, for my next trick…I will have a little rant!

After a year (and then some)of blogging on the subject of heart failure I sometimes wonder what more can be said? Then again, perhaps there is much that needs to be said, but publicly, and by other more qualified individuals than I. Perhaps the Surgeon General or the President of the United States…or maybe our new (cough-cough) Governor Scott should step up.

Make no mistake, when it comes to finding a cure for heart failure, its all about money and politics. Plenty of time and money is spent on fancy machines to diagnose, because that is how they generate money, but our money is reinvested in bigger hospital buildings and more fancy sophisticated tests!

Money will make the difference in the end; money will fund the research that finds cures. But you cannot get money as long as there is apathy. And you can’t eradicate apathy without generating interest. So perhaps that brings me back to square one…now that I have a few good days I think I will make some noise.

I am truly grateful for all of you that continue to send me encouragement and kindness. I am so much better for it, especially in my head, my heart and my soul. I am better because of my awesome family and creative friends, not the tests and the medical industry!

So, please take good care of yourselves and love each other. Be mindful of your own bright future and the life you make; and be wary of charlatans and ignorance that would have you live in the dark.

Make some noise!
Demand the best of your politicians, doctors and yourselves

Thursday, March 31, 2011

Pain is Relative

Pain is relative. No, I don’t mean those unannounced visits from your family. I mean that when I think about my heart, I become very aware of it beating, my breathing, and the pain.

But when I am creating, I am absolutely pain free for so long as I remember not to realize that I am not remembering that I have pain (as she takes breath) and thereby ruin the fact that I wasn’t aware that I had pain. Um…yeah.

So my latest practice is to try not to think about my heart and maybe I’ll be less focused on my symptoms.

Good luck, me!

Tuesday, March 29, 2011

Out of my Comfort Zone


Algebra...(I hope I pass, I hope I pass...)
Facilitating Artist's Way on line
Physical changes

I am way out there where the magic happens...Bring it!

Friday, March 25, 2011

Some days this works better than others…

When life appears to be totally out of control this becomes the mantra of a certified control freak. "Whatever may or may not be happening to me, I can choose to feel exactly the way I want to feel."
Some days this works better than others…

Saturday, March 12, 2011

How Are You Feeling?

How are you feeling?
More than a couple of people ask me that everyday and that is the reason I write…

I typically answer, fine but today I surprised myself and stopped. Today it was a tougher question. I wanted to say fine, because in a comparative way, I am. I truly have few complaints, but today I stopped short of fine because I am not. I have terminal heart failure, and although extremely grateful for my good days and all of the great health I have enjoyed I know what bubbles underneath is just like lava below the surface of my thin crusted well-being. So, I answer fine, even when it is not.

I am out of breath, swollen and tired all of the time. These are the parts of this disease that have become a part of my everyday life. Sometimes my chest hurts and is so heavy I think I am going to implode, but am afraid I can't tell the difference between my paranoid imagination and serious disease symptoms anymore. Then I wonder, does it really matter. It's terminal heart failure, it’s pointless to worry. And even though I don’t want to worry, I will worry just the same. Go figure @$%*@

I don’t know what condition my heart is in, because I don’t want to know, I'll only worry. Better or worse, good or bad, functioning at maximum capacity or not, I don’t want to know any more. I don't want any more degrading, toxic, invasive, nuclear exams that doctors deal out like a cheap deck of cards. Besides, a walk to the end of the block and a couple of glasses of pinot grigio and I can produce the same results as the high priced atom smashing machines. (There is a reason for those lead aprons!) Quite frankly, I’d rather get smashed by the pinot, then I'll send them my results and a bill.

Why do I need to know all of this information, I’m not sure I should…no, scratch that, I do NOT want to know. If God wanted me to have access to all of that information, I’d have a daily paper read-out spew from a bodily orifice somewhere.

So, instead of feeling sick, waiting for them to run tests to tell me I am not getting better or feeling well, waiting for them to tell I am still sick, I have decided to just be. I have discovered, without the aid of the medical industry, that the best way to feel better when I feel like crap is to force myself to get up and just create something. That’s one of the reasons I paint, draw and write this blog.

Now… who wants another pinot?

Thursday, March 10, 2011

Love, Strength and Possibility

What if my limitations are illusions manufactured by my own fears?
What if my fear is not a circumstance of reality; but my own simple ugly pessimistic thinking.
Fear manipulates, controls, paralyzes.
Can fear continue to exist if I move my thoughts beyond it?
Can fear survive in the presence of love,strength and possibility?

....nope

Thursday, March 3, 2011

Here it is Again








I have the most wonderful heart,
It knows what to do
I trust
It knows what to do
I am grateful
It knows what to do

Monday, February 28, 2011

my peace

my peace will come when I understand i cannot fix this and let it be.
my peace will come when I recognize the circumstances I am in and let it be.
my peace will come when I accept people for what they are and let it be.
my peace is in every moment that is free of ego, judgment and control.
my peace is now,
if I can let it be.

Sunday, February 27, 2011

The Stronger I Grow

I do not have to surrender to or fight for control;
I simply need to focus on the people and things that create positive influences.
The more positive energy I create and surround myself with, the stronger I grow.
The stronger I grow the more control I have to do away with all of my fear, hurt and chaos.

Saturday, February 19, 2011

Full Moons






No doctors or pills, can do anything near as amazing as a full moon,a bottle of wine, a blazing fire and the most marvelous creative friends. I am blessed to be on this path!

Thursday, February 17, 2011

I'm Working On It....

Revelation #1

I have had a wonderfully simple and incredibly enjoyable DIY (do it yourself) life. I grew up in an extremely harsh and emotionally volatile environment but I grew up strong. For the most part, this has served me well as an adult. However, I am now realizing my definition of strong firmly incorporates the idea that asking for and accepting help is a patent sign of weakness. Combine this ingrained defense mechanism with an overpowering need to prevent this disease from consuming my independence and you have the perfect irrational inability to ask for and/or receive help.
Intellectually, I understand the problem I just do not have all the answers yet, but I am working on it!

Revelation #2
is not an all together new one, but it always bears further investigation.

There is a gigantic emotional support void between disease diagnosis and the end stages of life. There is some support at the onset and counseling available in the end but nothing for the in between. I am left out here on my own, twisting in the wind, desperately trying to make sense of this life while maintaining some meaningful purpose. The doctors are only interested in keeping me alive longer; I am only interested in being fully alive now and emotionally prepared for the end.
I know, as do most terminal patients, the gruesome details of how this will end but what I want right now and crave more than anything is some good old fashion “Slap my ass, it ain’t over yet, honey” information on how to capitalize on my existing strengths and to live fully, in the now. Not another lame relax, conserve your energy, avoid stress lecture. (Sorry, I got a little militant here. I am working on that, too)

Revelation #3
and the big finish!

I do not honor this incurable disease. I will not give it any more power over my life by extending how long it lasts.
I do want to live the rest of my life fully present with extreme purpose. I want tons of love and laughter (and no pity) regardless of the physical circumstances and/or consequences. I am stealing a quote from the movie Steel Magnolias, that says it best, “I’d rather have 10 minutes of wonderful than a whole life time of nothing special.”

You may have realized by now that I am really good at indentifying problems but not so great at immediately identifying a solution. Again, I am working on it!

Tuesday, February 15, 2011

Listen but Do Not Hear

They listen but do not hear.
Opinions ignored
Agreements broken
Secrets kept
Hurt disguised as a good intention still hurts
I take responsibility for allowing myself to be hurt.
I have learned a hard lesson.
Next time,
I will listen and I will hear.

Saturday, February 12, 2011

Tell Your Heart

“Tell your heart that the fear of suffering is worse than the suffering itself. And no heart has ever suffered when it goes in search of its dream.” ~ Paulo Coelho

I could not say that any better, so I won't even try. However, Me and my heart will continue searching for my dream!

Thursday, February 10, 2011

Thursday, February 3, 2011

Nap

Wow...I was just VICIOUSLY attacked by a nap. Sneaky little dickens came out of nowhere and took me down before I could yell for help!
Whew! I made it through!

Wednesday, February 2, 2011

Filling the Well

to restore my heart…

A day with my three wonderful grandsons! They have so much energy it seeps out of them and gets into and on everything, they get close to. All I have to do is be near them to absorb some of that magnificent energy!

A perfect lunch full of the most delicious and incredibly decadent foods, celebrating our 82 year old (and still very handsome) Dad’s birthday with and my incredibly supportive sisters.

An evening in the company of the most creative women I have ever known, as we attended our dear friend’s first public poetry reading. She was magnificent!

My well is full!

Monday, January 31, 2011

Making Significant Progress

“When you encounter much difficulty and resistance, it is because you're in the process of making significant progress.”
Wise words tweeted at me this week.

I think I like the idea that all the crap I have had to deal recently is the universe giving me the heads up and saying, “Get ready girl-really good stuff is on the way”!

Monday, January 24, 2011

I Do Not Know What That Is

Desperately searching for all the things I want to accomplish, while I still can, I have learned that I have no idea what I am doing. There never have been any long-term directions or distinguishing themes to my life. I always managed to rise to the typical expectations, but nothing more.

I am feeling desperate to achieve that marvelous life that will fulfill me.
I am feeling more overwhelmed and worthless than I have ever been.

How do I be everything I want to be, even when I do not know what that is?

Saturday, January 22, 2011

Powerful New Ways to be Strong

In the New Year 2011, I planned a big renaissance for my life, my art and career…
I got pneumonia. Obviously, reinventing my life has not gotten off to a great start.

I freely admit that I do not know how to (nor did I really want to) experience life from a less than perfect point of view. So this past year while experiencing rather magnificent health for someone with heart failure, I reformulated what I was capable of and for all intensive purposes, it did not include limitations.

Limitations have made an ugly and abrupt arrival.

My lesson is to become honestly aware of my physical weaknesses and limitations.
In so doing so I will find powerful new ways to be strong.

Monday, January 3, 2011

It is Amazing

It is amazing that the part of me that is sick is the one part of me that keeps me going.

I am blessed to have such a strong heart that knows in a mysterious way that its function is so much more than simply pumping blood.

Sunday, January 2, 2011

Wisdom of My Heart

The best way to honor my life is to follow my heart!
Asking the questions,
Quietly feeling the answers
Trusting in the strength and wisdom of my own heart.