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!"


.

.

Friday, December 31, 2010

2011 Resolution

In 2011,

I will look to my own heart as my compass;

I trust it will help me see more clearly which direction to go to create an inspirational life.

I am grateful that I am on a path that will bring me closer to my purpose in life!

Thursday, December 30, 2010

The Greatest Gifts Do Not Fit Under the Tree!

A most awesome fun visit! Of all the gifts under the tree, these little guys are the real gifts of Christmas. My heart breaks for them every day!
video

Sunday, December 26, 2010

The Heart May Open

“Close the door of words that the window of the heart may open.” Rumi

This season brings out the best and the worst!
Mixed in with the random acts of kindness are massive amounts of vulgar ego.

I am just now learning how to open up and depend upon my heart.

Saturday, December 25, 2010

It Makes Anything Possible!

The Christmas season and anticipation of a brand new year fill my heart with positive thoughts, forgiveness and hope. The disappointments in the past cannot equal the power of love that gives my heart and soul all of the energy I could possibly need. It makes anything possible!

Friday, December 24, 2010

Listen to Your Heart

Listen to your heart when it asks you to act with kindness. Your heart knows what truly fulfills you.
Listen to your heart when it suggests that you be patient. Your heart knows how real and lasting value is created.

Listen to your heart when it calls you to live this moment with joy. Your heart knows what makes you the most effective.

Listen to your heart when it urges you to see profound beauty in the most ordinary things. Your heart knows where your real strength comes from.

Listen to your heart when it reminds you to feel hopeful. Your heart knows about possibilities that your mind has not yet considered.

Whether you're up or you're down, whether you're confident or unsure, listen to your heart. For your heart knows why you're here.

- Ralph Marston

Wednesday, December 22, 2010

No Matter What the Circumstances

I am not my problems and they are not me. I choose to express my unique value no matter what the circumstances.

Sunday, December 19, 2010

Great Joy

Pain is part of life.
Accepting the hurt and moving forward anyway is the secret of happiness.
When you encounter great difficulty and resistance, it means you are on the verge of great joy.

Tuesday, December 14, 2010

Abstract Medicine

Ab-strakt (adjective) emotionally detached or distanced from something Encarta Dictionary: English (North American)

The idea of empathy, sincerity and caring about another human being as part of medicine is abstract.

Like a painter participates in a process that includes a relationship with the paint and the canvas, I wonder why my doctors cannot participate in the process that includes a relationship with medicine and me.

I am learning to make peace with the fact that in the eyes of most of today's medical industry I (and others) are nothing more than a billable disease.

"....9 out of 10 doctors think you should get well immediately, the 10th doctor thinks you have a few bucks left". (posted by my brother in-law Alan, fellow heart patient)

Sunday, December 5, 2010

I DO NOT give permission!

I DO NOT give my permission for doctors, hospitals and drug companies to exploit this disease and my fear for their their financial gain. And, quite frankly I do not have the resources for them to be that interested.

The Real Loss

Life entrenched in material comfort without purpose, can be misery.
Life surrounded with purpose is sweet and fulfilling, even when there are obstacles, questions and pain.

Some how, I was convinced to spend far too much of my life working toward a concept that society defined as successful.

I was convinced that my heart and soul’s purpose could not be enough to create a happy life. I always needed to be more, or better.

Please, believe me when I tell you that every moment of my life
that I was NOT pursuing my purpose
is the real loss that I grieve.

Wednesday, December 1, 2010

Turkey Birthdays

The wonderful opportunity to spend the day with all of my boys!
1 husband, 2 sons, 3 grandsons (and a partridge in a pear tree!) for Thanksgiving and Jason's and Oliver's birthday was a huge gift.
This was a most wonderful day and I am incredibly grateful!

video

Tuesday, November 23, 2010

Full Moon Fridays

There is absolutely nothing better than being outdoors on a crisp fall evening around an open fire, under a full moon with a hand full of marvelous creative women. (A little wine and chocolate don’t hurt either!) The most open, honest, authentic creative inspiration appears on full moon Fridays! Thank you!

Thursday, November 11, 2010

Wednesday, November 10, 2010

Almost Perfectly Wonderful!

Had an adventurous purposeful day!
Was able to keep up as we walked the school corridors and see at the most creative art works you could imagine!
Had an impeccable lunch on the patio with Herbie Hancock,the resident rooster.
Concealed the exhaustion in the bookstore stacks then slept for 3 hours.
But there are no words that will be able to express how tickled and grateful I am to have an almost perfectly wonderful day with absolutely perfectly wonderful friends!

Saturday, November 6, 2010

Don't Talk Like That!

I come to this blog to squeeze fear out of my life
I can expose and work through the parts of this disease
that I (and most everybody) do not want to look at or talk about.

I can come here and write about fear.
I can explore my fear before anyone can say “don't talk like that.”

I can work through the ugly questions...

Do I give the medical industry permission to exploit my fears because I have been too afraid to accept death as part of life?

How could I allow the pharmaceutical industry to define my life when I know their only interest in me is a means to generate profits?

Why don't they ever ask me what I think or what I want?

Sunday, October 31, 2010

All Hallow's Eve

Two vampires
A witch
A ninja
A ghost
How fun!
I missed halloween last year,
not missing this year!
Here comes another ghost and
an e-mail from University of Miami
stem cell research....

Sunday, October 24, 2010

I Wonder if He Knows.

Gauguin inscribed on one of his pieces,
“Where do we come from?"
"What are we?"
"Where are we going?”

If he were still alive,
I would answer him.

I don’t know.
I don’t know.
I don’t know.

I wonder if he knows now?

Tuesday, October 19, 2010

The official list of "I Hate It When’s"

So, in the interest of my sanity, and my one year anniversary and since this is the forum to express myself; not the doctor’s office, I will keep this short and pithy…

I hate it when, I am forced to think about breathing or my heart beating.

I hate it when, my heart flip-flops and scares the be-Jesus out of me.

I hate it when my toes look and feel like "Snausages" doggie treats.

I hate it when, I have to tell Skip I don’t feel good —again.

I hate it when, I feel like death warmed over.

I hate it when, the nurse takes my blood while fighting with her boyfriend on a cell phone crooked in her neck.

I hate it when, I think of doctors (but I suspect they hate thinking about me, too)... We’re even!

I hate it when, doctors toss pills around like candy and....oh hell, I'm not going there....

I hate it when, my chest hurts and feels so full, I would not be surprised if the next moment looked like a scene from "Alien".

But...
I love that I am still here and I can come to this blog, and be myself, whatever myself is that day.

OOOOH...That felt good!

Happy Anniversary Heart, You are doing a great job!

Monday, October 18, 2010

Options

Acceptance is the foundation of emotional options.
If you are not accepting the facts,
nothing else will work.
That’s all!

The ability to exercise my emotional options rests on a foundation of acceptance.
Acceptance is the absolute prerequisite to beginning,
NOT ENDING!
A year ago, the beginnings of this stage of my life were fear, despair, shame, fear, guilt, resentment and fear.
Oh, Did I forget to mention fear?
All of these starting points had one thing in common.
They are all rooted in giving up all of my other emotional options.

I have a second chance to begin again by celebrating life, choosing acceptance and exercising all of my emotional options!

PS..these are the flowers and the second installments to "MY HEART" book that wonderful creative friends gave me, and Terry got me a totem and soap. It was like Christmas!

Don't I have some kick-butt friends?

Wednesday, October 13, 2010

I Have the World's Greatest Kids!

Grown, responsible, awesome, marvelous children! How did I get so lucky? I am blessed!

Learning to Let it All In

I have done more damage not acknowledging difficult emotions. It is time to let them all in, deal with them, then let them go. I cannot change the past.


All That We Let In Indigo Girls

Tuesday, October 12, 2010

Healing my Heart

The family calendar (my sister publishes every year) is completely void of anything Cheryl, no birthday, no anniversary, or admission that I am alive.
I do not exist.

The same holds true for my brother, without the tangible calendar evidence.
I do not exist.

There are no discussions, we do not argue or fight.
We do not owe each other money or property.
We simply did not agree with each other at sometime in the past.

I need all of my heart, to heal my heart,
I acknowledge the damaging blockade in my heart created by the pain I ignored.
I am letting go all hope of having a loving relationship in the future or a chance to repair the damage from the past.

I release my resentment and hurt.
I allow myself to grieve.
I forgive.
I exist.

Friday, October 8, 2010

The Emotions I Knew

Big life changes are the breeding grounds for negative emotions!

I am scared, I am not good enough and it is just too hard
slip into my thought process without me realizing it and certainly without my permission.

I know these negative emotions have been and always will be with me, but I want to get back the emotions I knew, the emotions that made me strong, creative and confident.

Friday, October 1, 2010

Will I ever have control?

The one thing that makes me, ME are my emotions.
They are the same things that take over and create insurmountable amounts of grief and chaos.
My head and intelligence knows what should be done, then my heart and emotions take over, and it becomes a pandemonium.
Will I ever have control of these emotions?

Wednesday, September 22, 2010

What if?

"If you play the game of life, you'll have plenty of wins and losses, regardless of your talent level.
Being inspired means that you're willing to act upon your inner impulses so that you'll never experience the pain of dying while still wondering,
What if?"


- Dr. Wayne Dyer

That’s the way it is.

There are things you can always count on.
Day will follow night.
Spring will follow winter
and healing follows sickness.
That is the way it is.

I am ready to get on with it

Tuesday, September 21, 2010

Cracks

Approaching one year and able to look back and assess the emotional damage left in the wake. Noticing parts of me that have grown stronger and deeper but watching others slip and fade away in the distance. I work hard at covering the emotional cracks hoping that no will notice, but I suspect they still show.

Saturday, September 11, 2010

Cathy

"I love you! You are brave. You are full of courage and power. You are one of the lucky ones. You are willing to change. I love you. I am good to myself, I care about me, I want the best for me. I love you. I am full of love for myself and others. There is more than enough for all. I love you!"
-Cathy Phelps (Cathy's last blog entry)


Missing my friend, missing having someone that really understands how it feels. Loving her strength and courage.

Wednesday, September 8, 2010

A Friend Reminded Me

There is a great deal of insight available to anyone that stops and looks with in. However, sometimes it takes looking out side to see the real world.
A visit with a friend reminded me.
Without saying a word, she told me to embrace each day. Do not worry so much about the future, it will come whether I am ready or not. Thank you, Cathy

Monday, September 6, 2010

The First Casualty

I have made concessions to this disease. It has affected my daily life and has been extremely frustrating, but I can honestly report that until this weekend I did not feel like I had missed out on any event that I really wanted to participate in.

This was the first real casualty, the first time that the disease won. This time it has literally taken life away from me. Fear and pain paralyzed me, and I gave up a wonderful opportunity to share an experience with my children.
I hate this!
How much more life will I allow heart failure claim?

Monday, August 30, 2010

High School Reunion

Graduating from a small town high school, there was a very strict sense of appropriate southern lady-like behavior. I learned early how to bend the truth to fit the unrealistic expectations.

My 1972 classmates shared pictures of the latest high school reunion and I did not recognize my youth or the people I so desperately needed approval from.

I am still releasing my small town high school expectations.

Sunday, August 29, 2010

Elusive Passion

My adult life has included the respectable roles of daughter, wife, mother, grandmother. Each role had well-defined tasks that were judged by how well I took care of others. If they gave grades, I suspect I would pass.

However, if my life is graded by how well I took care of me, I fail.

When I was afraid, I hid in the roles I knew I could pass.

I am searching for a new role.

I am searching for the life and passion that comes from knowing why I am here. The passion that explodes with the energy I so desperately need.

Art has given me a glimpse of elusive passion. I know it exists!

Saturday, August 28, 2010

Brothers and Sisters

I wish I could go back to the time when my sibling relationships were easy.

We have been forever united by Christmas Eve dinners, kick the can, squirming in the family pew, long bike rides, Betty's fried chicken and spaghetti-os. Of course there is also the strongest bond (not a blood relationship) that unites all siblings, the unfair household chores imposed by heinous parental tyranny.

Time passed and our lives filled up with money, marriages, divorces, deaths, and religion and we lost the real magic that only of brothers and sisters can know.

I wish I could have that magic back!

Friday, August 27, 2010

OK

Every now and again, in a fearful moment, I feel the weight of my own judgment and wonder if I would do things differently if I could start all over again?

I honestly think I would not change anything, but I am not haughty enough to say that with a great deal of conviction. Everything I have done, right and wrong is responsible for making the person I have become. The person I am is not great, but it is ok.

I am learning that there is no shame in ok.
Ok is not perfect but it is relatively free of remorse and regret.
Ok is good.

Love and Rules


Why do we think love needs rules?
Love transcends rules!

Natural Balance

Nature and the universe exhibit the miracle of balance every day. For every night, there will be a day. Even today’s opinionated media exhibits natural balance, for every “Howard Stern” that comes forth, a “Glenn Beck” will erupt. The love and peace that passes all understanding cannot be found in the chaos of the extremes, but in the gentle landscape of balance.

Tuesday, August 24, 2010

Remember the Truth!

A hostile heart failure coupe has taken my identity, disrupted my life’s purpose and undermined my self-worth. It was a fast and incredibly effective onset and in a state of upheaval and disbelief, I was unable to mount an effective defense. “Cheryl, the victim” consumed me.

Confusion is this disease’s weapon of choice as it hurls a barrage of mixed messages.

My heart is the primary source of love and life but my heart is dying.

A primary care doctor can order and Medicaid will pay for a mammogram and a colonoscopy to look for a disease I do not have, but severely limits cardiologist visits’ for a disease that I do have.

I am told go immediately to the ER for the slightest chest pain but I am sent to the free clinic to reduce hospital visits.

I have a very small balance left on my 2010 Medicaid outpatient services allowance, and turned away by doctors because of it, but have an almost unlimited hospital budget and a very generous hospice allowance.

I am consistently challenged by the rules and regulations of Medicaid, embarrassed that it has become my only option but grateful that it is available.

Medical inconsistent and authoritative nonsense undermines my intelligence and self-confidence.

Muddling through this disease, I am learning that if confusion is its effective on going weapon of choice, my best defense will be the truth.

The truth is I am intelligent, I have and will continue to contribute, I still have purpose, I have value now, and I am only a victim if I allow it.

I have to be on constant guard and always remember the truth!
(but it is not easy)

Saturday, August 21, 2010

The Student is Ready

This failing heart tries to convince me that I no longer have the strength or courage to accomplish a significant life.

I need to recognize that these times can be my best teacher. If I can transform these destructive situations into learning experiences, I will become confident enough to actively pursue the life that continues to evolve with meaning and purpose.

Discounting my feelings and fears insures that life’s most valuable lessons will never be learned.

When the student is ready, the teacher will appear.
I embrace my failing heart as my teacher

Thursday, August 19, 2010

Look Out! Pity Party in Progress

Life is throwing curves, one after another. Finances, family and home hurl crisis after crisis. I long for normalcy but find myself in situation after situation that can best be labeled as uncharted lunacy.

I am counseled to relax, avoid stress and take it easy, while I watch our finances, home and family literally crumble around me.

This is not life it is crisis management.

Tuesday, August 17, 2010

Swim Parallel to Shore!

I am a Florida girl, one of the few born and bred in the sunshine state. Our typical TV weather always include coastal ocean reports, not just the normal tidal information and water conditions for boaters and fishermen but regular rip current warnings for swimmers, too. Rip currents are incredibly strong irregular narrow currents that appear sporadically and surge through the surf from the beach directly out to sea. Many coastal drowning deaths are attributed to swimmers caught in these invisible erratic currents.

It is impossible to fight the intensity of the fast moving waters by swimming directly against the current into shore. Rip currents are normal occurring situations that can overwhelm even the strongest swimmers. However, the TV weatherman consistently reminds us that there is an easy way out of this extremely dangerous situation if we resist the natural urge to get to shore right away and do not panic.

Swim parallel to the shore.
Get out of the strong current. Do not fight it head on.
Once out of the current then turn and swim easily back into the shore.

I feel like I am caught in a rip current, expending all of my precious energy while still being pulled out to sea. This morning’s coastal rip current report and reminder to swim parallel to the shore was the perfect metaphor! It is time to resist my natural urges to get everything back the way it used to be. If I resist my natural urges to be my old self and do not panic when I cannot live up to the old expectations, then I can figure out how and what I want this life to be, without swimming directly against this heart failure current.

I have to swim parallel to the shore first!

Just keep swimming! Just keep swimming!

Saturday, August 14, 2010

Putting it Out There!

As a traveling outdoor art festival artist, you can imagine how my life changed post MI. Actually, the economy had already done a number on it; the heart attack finished it off. I miss my gypsy life! However, I missed creating even more.

Tonight is my first exhibition (at a local gallery, with six other wonderful women) and I am scared to death. In the past, my work has been about pretty pictures that appealed to potential buyers. www.cherylevans.net

This work is about my journey. Sometimes dark, sometimes wishful, none of it pretty.

It is a new artistic voice and it is very different from what it used to be.
What if they all expect to see the old stuff?
I am terrified!

I cannot survive in the dark WHAT IF
When the magic and light is here NOW

Friday, August 13, 2010

Silent Screaming!

I had no idea how hard this would be!
I had no idea it would be so lonely!

I have so many questions and no right answers!
Positive thinking and gratitude is the BS I fling around when I have nothing else!

Thursday, August 12, 2010

Small Things


I don't do great things.
I do small things with great love

No Future

Years ago, I remember fussing at my children to work harder for their high school grades or they would not get into college and without college, they would have no future.

Now I find myself with no future, going back to college.

Life never makes sense!

Saturday, August 7, 2010

I Have to Succeed

Does it really it matter where I look for success? Doctors, family, God, friends or self, as long as I find the courage to emotionally succeed!

"You know, I had to succeed because I finally ran out of things that wouldn't work." - Thomas Edison

Friday, August 6, 2010

Understanding (and the lack there of)

It took some time to wrap my head around this physical situation and I will freely admit, there are days that the simple medical explanations still escape my understanding. However, the understanding that eludes me on a regular basis is the emotional part of this disease.

I find brief periods of peace, and what I certainly feel is the beginning of the final long-term understanding only to have it slip away.

I wonder if I will ever truly comprehend the meaning of this disease and my life. The one true understanding I have is that if I quit trying, I never will understand it.

Thursday, August 5, 2010

A Fine Line

There is a fine line between reality and depression! The trick is to figure exactly where that line is and then precariously balance my life on it. Just like an acrobatic tightrope walker, I am hoping that time and practice will help me achieve a better sense of balance.

Writing is my balance pole.

Wednesday, August 4, 2010

Expectations

I expected doctors to respect and care about me.
I expected medications to improve quality of life, not just add to the length of the disease.
I expected emotional support to accept and cope with a terminal disease.

Unmet expectations have been my biggest emotional enemy and the source of profound disappointment.

I am learning to take responsibility for the unrealistic expectations that I have created.
I am learning that I have the strength and intelligence to eliminate these expectations.
I am learning that the only person I can expect anything from, is me.

Tuesday, August 3, 2010

Afraid of Failure

I wonder how much depression I endure simply because I am afraid of failure.

My unconscious plan to protect myself from failure was wonderfully simple.
Do not attempt normal (pre heart attack) life!
It was a sure bet, if I did not attempt it, I could not fail!

Unfortunately, my unconscious effort to thwart failure,
guaranteed I would not succeed either.
The more I resisted failure the more depressed I became.
The more depressed I became the more I resisted failure.


What if… the lack of success (not the lack of failure) enables depression?

What if… failure is the only way to produce those sweet sweet successes?

Monday, August 2, 2010

A Change in Beliefs, I Am Fine (just a little slower)

I am finding that my best prescription does not come from a pill bottle! I do not need a doctor’s prescription or another trip to the pharmacy. All I need is a change in beliefs!
My heart is doing the best job it can, it may not be perfect or strong but it allows me to do anything I want to do and that is enough for me. I am fine! (just a little slower)

Sunday, August 1, 2010

Less than I Expected

A year ago, I did not think about what I expected from my life, but I am certain it was not this. In addition to dealing with this physical disease, I am grieving the loss of the life I expected even though I never truly defined the life I expected.

The gift (yes I said gift) of heart failure is the emotional healing that seems to begin as I am able to identify specifically what I have lost. Just as my physical losses were diagnosed through medical tests before a treatment can begin, my emotional expectations and losses have to be identified, before solutions can be found.

The REAL healing begins as I admit and accept that this life is less than I expected.

Saturday, July 31, 2010

Pursuing Passion

The house chores are woefully behind, the pantry shelves are chronically empty, the exterior house paint is peeling and the yard is full of weeds, so how could I possibly find the energy and inspiration to re-establish my passion for creating art?

This week, because of commitments I made long ago to an art gallery exhibition and because I have left everything to the last minute (per normal, this is vintage Cheryl) I have been so busy. I experienced the extreme physical exhaustion I feared and anticipated but there has also an incredibly unexpected rush of palpable emotional energy!

How could I have forgotten how much energy was available to me, just by simply pursuing my passion?

Friday, July 30, 2010

Road Signs

I believe the understanding that brings me peace will not mysteriously appear out of thin air. My peace will not come from doctors, pastors or the people I love so dearly, although that is how I thought it should be.

I am learning that the fear and grief I have been struggling so hard to avoid are in fact the road signs that promise I am heading in the right emotional direction. The route to the peace passes through fear and grief.

Thursday, July 29, 2010

Ordinary Miracles

I find the chronic exhaustion and constant need to stop, slow down and rest as the most unfamiliar and frustrating part of this situation. I resent the inescapable down times.

However, I am beginning to see the little things that I have never seen before. Watching and anticipating the daily progress of orchid buds, trying to count the tadpoles in the little pond (months ago, I would have wigged if the water was dirty) and noticing the facial expressions of the frog that moved into the birdhouse.

I am learning to appreciate the ordinary miracles!

Wednesday, July 28, 2010

The Enigma

Heart disease is a physical and emotional wound wrapped in one diagnosis.
The medical industry embraces a wealth of treatments
for the physical heart that cannot heal,
yet nothing for the emotional heart that can.

Tuesday, July 27, 2010

For Every Action…

Great emotional comfort often comes from the strangest places! Physical Science 101 and Newton’s Law gave way to a gem of inspiration as I was meditating this morning.

For every action there is an equal and opposite reaction.

I regularly receive advice to focus on the positive, but notice that my journal/blog entries often expose the negative emotional under belly of this disease.

If exposing fear and suffering is the action, imagine the equal and opposite reaction? The capacity to feel joy is in direct proportion to my ability to experience my pain.

Emotional suffering is the harbinger of abundant happiness.

Monday, July 26, 2010

Emotional Terrorism

There are times that I feel like my own sick heart holds me hostage.
Friends and family encourage me to fight.
I feel like I am in at war against this.
I just want peace!

Sunday, July 25, 2010

The Loop

I am desperately trying to move though my own grief. I have done denial, extremely well I might add but I am struggling with consistent acceptance. I manage acceptance admirably for short periods of time, then I easily slip back into denial, which can instantly morph into depression, that can be quickly relieved with denial. Denial-acceptance-depression-denial-acceptance is a vicious loop I cannot seem to break.

I am desperately seeking the emotional tools that will move me through my own grief to find peace.

Full Moon and Tijuana Flats Free Beer Night

Life does not get much better than a breezy summer evening under a full moon. If you want it to be a perfect summer night, try Tijuana Flats patio on Saturday nights with a spinach-artichoke quesadilla (which I am certain is not true Mexican recipe, but awesome anyway),friends, family, free beer and a full moon.

This could be a really sad commentary on my social life or a marvelous testament to my ability to enjoy and celebrate every situation.

Either way...
It just does not get any better than this!

Saturday, July 24, 2010

The Secret of Life

Quality is more important than quantity.

A diagnosis of terminal heart failure and
I forgot this.

In a desperate scramble, my primary life mission quickly turned into
get more time,
get more time,
get more time.
It allows every possible procedure, any amount of money, and all conceivable medications, regardless of their consequences, to become rational solutions…
if it gets more time.

How did I allow time to become the measure of my life?
In my heart, I know the secret of life is enjoying THIS time. James Taylor says it the best in his song, when he writes the “Secret of Life is enjoying the passage of time. Time isn’t really real; it’s only from your point of view”.

Friday, July 23, 2010

Finding Balance

I watched my grandsons on the playground last week. As soon as we got inside the gates, they raced straight to the see-saw and jumped on. Every time their side of the see-saw came close to the ground, they would forcefully push off laughing and squealing with delight.

I wondered why I was spending so much time and energy struggling to maintain balance in my life when obviously there can be a great deal of joy in up and down!

Thursday, July 22, 2010

Shame in Acceptance

Refusing to give up is a noble act. I love cheering for the underdog! Just about every book I read or movie I see revolves around the character that survives and even thrives against all odds. We all admire the “come from behind” winner and respect the courageous fight to the finish.

I feel guilty for not wanting to wage war on this disease up until the very end. I do want to waste my time, finances and energy making this disease last longer. I want to accept it. Why is there so much shame in giving up?

Wednesday, July 21, 2010

Fear is the Biggest Most Destructive Part

This disease (as I am certain most diseases) has two separate but very integrated parts. The first is the most obvious physical component. This part has an incredible array of choices and treatments when it comes to prolonging my physical body. The second part is the emotional element. There is little if any information available from medical professionals that relates to my emotional health during the course of this terminal disease.

Fear is the biggest most destructive part of this or any long-term disease.

Why doesn’t the medical industry recognize fear as part of a disease?

Wednesday, July 14, 2010

Addicted to Dunzie

Dunzie is a great Buddhist word! It simply means distraction…
I look around my favorite chair and find the Dunzie mother lode, a Laptop (with wireless internet), iPod, cell phone, books and TV remote. I am guaranteed that I will never have to sit quietly and contemplate or THINK original thoughts. Armed with the latest high tech paraphernalia I can stave off all possibilities of the dreadful, contemplative solitude experience.
Help! Is there a Dunzie hotline?

Tuesday, July 13, 2010

Genuine Me

I, and I suspect most of us, have spent a good part of our lives living up to other peoples expectations. I was so busy molding my life into a functioning and publicly acceptable product that I never really became a genuine me.

As this disease unfolded, I found myself looking to others for the correct acceptable role to play. A few soap opera characters popped up right away the martyr, the poor young thing and the tower of strength. All of these personas worked for a little while, but I found that at the end of the day I was emotionally exhausted from wearing a mask that was not me.

This disease is making me search for the genuine me. I am learning move closer to my fear, make friends with myself and trust that my broken heart will lead the way to the genuine me.

But...be on guard my soap opera characters often pop out uninvited when I am confused and do not know what to do or how to act.

Monday, July 12, 2010

Writing Has Been a Great Comfort

There have been (and I am certain will continue to be) times that I desperately needed some one to share the roller coaster feelings of this disease. The anonymity of this blog gave me the courage to say things I could never say aloud to family, friends and doctors.

Heart Failure may be what they call this, but my emotional loving heart has never been more alive. My heart is damaged and weak, but it has not failed me.

Writing has been a great comfort and has given me back some purpose.

Make Good Choices

Make Good Choices seems to be this generation’s parental mantra. I hear that admonishment everywhere. I am certain that the real meaning is NOT to think about the situation and make the appropriate choice that is right for you but to make the choices someone else has told you to make.
Some might think I make bad choices, but they were, and will continue to be my choices.

Saturday, July 10, 2010

Agnostic

Agnostic (noun) ag·nos·tic
Somebody who doubts that a question has one correct answer or that something can be completely understood.

Encarta Dictionary: English

It is OK that I do not have all of the correct answers. Agnostic is a good word for me.

Friday, July 9, 2010

Condescending Compassion

If you have been on the receiving end of condescending compassion, you know it does not feel right. I know I am supposed to be grateful, but in my heart I know what is being felt is pity. This compassion is being generated from a source of fear. Regardless of how the compassion is intended I feel like I am being seen as wounded, flawed in some way, pathetic and in need of being cared for. It takes my power away, makes me weaker and floods my body and heart with negativity.
I am all right in my pain it makes me stronger.

Don't Worry About the Future or Tuesdays at Terrys'

Tuesday July 6, 2010

"Don't worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4 p.m. on some idle Tuesday."
Mary Schmich

Friday, July 2, 2010

To Tell the Truth

Remember that old game show on TV? Three people would all claim to be someone extraordinary, but only one really was. The game involved questioning these three, to determine which one truly was who he claimed to be. Some times, they would guess the right one, but other times the imposters were so good at telling a story, that they would choose wrong.

I find myself in a similar position.
Who is telling the truth? or maybe the show should have been
"WHOSE TRUTH IS THIS?"

Thursday, July 1, 2010

Holy Crap......Halos?

I turned on my SKYPE camera this morning and weirdness showed up on my computer screen. Yikes!

A few months ago, I was struggling with my health by aggressively pursuing holistic, stem cell and surgical treatment. Reoccurring shadow people began running through my peripheral vision, but there was no camera on to catch those "bad boys". Then one night one of them stood right in front of me, blocking my path, it was like a black hole! Screwing up my courage, I walked through it. I was not afraid, I had no specific feelings of fear or doom but I have to admit it was incredibly unnerving. As soon as I gave up medical intervention and accepted what was happening to me, they went away. Now this?


This interpretation from a friend of a friend….I like it!

In your pictures I see the wand of health. If you look hard enough you will see a small Angel holding the tip of the wand healing you. Up in the left hand corner you will see a larger one healing your whole body and you will be healed with in 60 day's they are still with you and will not leave until your whole body is healed. Believe and ye shall be healed. any more questions let me know.

Monday, June 28, 2010

Right With God?


After I was officially diagnosed with terminal heart failure, I over heard one of my siblings say,   Now...“I needed to get right with God”. I wondered whether I was suppose to hear that comment, but it occurred to me, perhaps that was the intent.

When did choosing a different path make me not right with God?

Why is my life defined by what I resist or exclude?

Why can't I be defined by what I have embraced and included?

Is my goodness only measured by a religion and rules?

Arguments about religion have created more hate, murder and destruction than any other single reason on this earth. How can we argue hate and kill each other for a God that only wants love and peace for us? My heart will not let me be a part of the rules and religion that justifies hate in the name of God.

I have followed my heart,
honored my creative gifts and shared my blessings.
I have loved dearly and been loved.
I have received more blessings in this life than most people can imagine!
The many open and diverse ideas I embrace will define my life. Honesty, love, sharing, and creating. These are the gifts that have made my life worth living.
This is the measure of my life's purpose and goodness, I cannot be judged by any man's definition of a religions rules, I can only be judged by the divine loving God that I cocreate with

and I am extremely right with my God!

Saturday, June 26, 2010

Embrace Who You Are

"Let Go of Who You Think You're Supposed to Be and Embrace Who You Are" -Brene' Brown

I embrace my
imperfect life
round body
wiry short hair
sick heart
dirty fingernails
messy house
need to cocoon
movie pop corn

Oh Ralph!

"What lies behind you and what lies in front of you, pales in comparison to what lies inside of you."~ Ralph Waldo Emerson

Oh Ralph! If you only knew what is inside of me.

Friday, June 25, 2010

Let Go!

The further away I move from doctors, tests, clinics and medicines…the better I feel. The more I embrace the gifts that I have been given, the easier it is to let go and live freely!

Again...I remind myself and all that love me, that the best, strongest most amazing part of who I am- cannot be measured with rulers or medical tests. I am on this path for a reason.

Wednesday, June 23, 2010

The Enemy

Heart Failure is not an invading disease like a cancer that instigates war. I do not have any weapons like surgery, chemo or radiation. The enemy that occupies my body is my own heart.
What is this enemy asking me to let go of?
What is this enemy telling me to hold on to?

Tuesday, June 22, 2010

Sisters

Some are by blood, some by marriage and others by spirit, all are wonderfully different, and each has a lesson to teach me.

Separated sister let go of me ages ago. We share a difference of opinion, a difference in religion, a difference in economics. We are polar opposites. Unable to honor each others chosen path or celebrate our differences, we simply choose not to speak.

Scared sisters are afraid for me. I do not need to fear anything because they have enough fear for all of us. They want to help me do it right, do it better, fix it, and undo all of the things I have and continue to do wrong.

Sacred sisters accept me just the way I am, with no expectations. They are on this journey with me. We laugh, cry, play and celebrate. Their lessons are the most treasured expressions of support, joy, forgiveness, creativity and life.

I am blessed to have all of these sisters to teach me.


Sister Dave Matthews Band

Stories

As I pay more attention to life, I begin to understand that some of the difficult situations we all get in to are created by the stories we tell ourselves. I have seen these stories be habitual explanations, dramatic exaggerations or total fabrications, but the one thing they all have in common is that the tellers sincerely believe their stories are true.

"I did this to myself, I deserve heart failure" has become part of my story.

Are people thinking "this is what happens if you do not follow the rules?"
Will my death be punishment for not following the rules?
Do I betray my goodness to tell a story to confirm medical explanations about my heart failure?
Is my story a habitual explanation, dramatic exaggeration or total fabrication?
Is my story true or just another story?

Monday, June 21, 2010

Unfinished?

What is unfinished for me to give?
What is unfinished for me to heal?
What is unfinished for me to learn?
What is unfinished for me to experience?

Sunday, June 20, 2010

Opening My Heart to Fear

I have spent my whole life, identifying and fighting fear; I have even taught others how to do the same. Now, I am not certain that was a good thing. Fear threatened me with poverty, pain, separation and death. I picked up my armor went to war with each of these and more to protect my quality of life and passion for my art.

While I was fighting the fear enemies inside my own head, it occurred to me that fear has surrounded all of us and become a regular business technique. Doctors, hospitals, lawyers, and insurance petal the fear of pain, then provide us with a solution for a price. Banks, lenders and other creditors tout their answer for poverty for a fee. Religion is the master fear monger. It uses our biggest fear against us, death. It appears that religions and businesses have identified our fears, then wave them at us, and shamelessly sell us their solutions. Fear has always been powerful weapon, that functions beyond our intelligence and continues to make us feel inadequate, sick and poor. It controls our every move and makes us spend our energy, life and money to avoid it.

What would happen if instead fighting fear by running from it, paying for solutions or following fear's traditions “because that is what you are suppose to do”, I take fear into my heart and accept it as part of life. Instead of acting on fear or fighting it, I accept it, hold still and breathe through it.

Can I regain my passion for life if I open my heart to fear?

Saturday, June 19, 2010

Inspiration x7


I wish I could tell you what magic drew the seven of us together. Although we have used the excuse that we are working through the “Vein of Gold” book together, I can freely admit that our existence in each other’s lives goes much deeper. Maybe it is the simple fact that we gather once a week with creative honesty as our only agenda, or maybe it is just the simple act of being in the company of other artists and creatives.

I do not need to know why. There is no need to analyze it, only enjoy the inspiration that these seven women channel through my back porch and into my spirit every week.

Thank you!

Thursday, June 17, 2010

Do what I do?

It appears that writing becomes the primary outlet for my negativity. Whew...feel bad for anyone that reads all this mess!

If you are here....
You may have to do what I do...
"Put on your big girl panties and deal with it!"
then giggle...

Wednesday, June 16, 2010

But They Are Starting to Bunch, OK








When I need to, I can rise to any occasion.
I put on my “I-can-do-anything face”
Jump in over my head,
And learn to swim on the way up

But don’t be fooled.
I struggle just as bad as anyone.
Underneath my fa├žade, I’m shaking in my boots.
So if I get a little testy with you,
Don’t’ take it personally…
And don’t tell me to
Put on my big-girl panties and deal with it.

I AM wearing my big-girl panties…
But they’re starting to bunch, OK!?


2003 Suzy Toronto

Monday, June 14, 2010

Sometimes the Answer is No

So, when I politely say no, it does not mean I do not appreciate you, it means I need to maintain what little control I have over my own life, right now.

Keeping my power means not falling into the make it better trap. Nobody can make this better; nobody can help me cope. It is on me and only me.

I am afraid that if I do not control what is done now, I will have no options when I get down the road. If I get into the habit of depending on others, I will be doing nothing more than making it worse for everyone around me and me. I have watched this scenario play out time and time again. I cannot allow fear of this disease, force me into to bad decisions now.

Friday, June 11, 2010

tEMpeR TAntRuMs

Not a full-blown foot stamping, screaming tantrums, but tantrums nonetheless.

I sat in the HF Clinic on Tuesday for well over an hour, no one comes and says we are running late, offers any explanation just has me sit and sit and sit. Feeling tired and sick, I left.

At the Wal-Mart Pharmacy….I deliver three new prescriptions and am told it will take 1 ½ hours. I returned to pick them up 1 ½ hours + the 20 more minutes I had to stand in line and they had only filled one of them. (They wanted me to come back later for the other two medicines) I asked for my prescription back and left here, too.

I do not know how I am going to fix this, but it felt good to take my power back. I am mad and have had enough! This is it; I am done!

Sunday, June 6, 2010

"I Will Not Die an Unlived Life"

I will not die an unlived life
I will not live in fear
of falling or catching fire.
I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible,
to loosen my heart
until it becomes a wing,
a torch, a promise.
I choose to risk my significance;
to live so that which came to me as seed
goes to the next as blossom
and that which came to me as blossom,
goes on as fruit.

Dawna Markova

WOW!
How is this for turning anger into positive strength!
Love it!

Marvelous Snippets of My Old Life

There are wonderful little gifts of time that sneak into my life. Totally unexpected offerings that pop in and provide the marvelous opportunity to have little snippets of my old life back! For just a few exciting hours, there is enough energy to feel good, to play hard (well kind of), break rules and laugh out loud! Thank you! I am so grateful for these gifts.

Friday, June 4, 2010

Celebrating Meaning & Purpose

Heart disease seems to have a dynamic life of its own, completely independent of logic and my wishes. It operates like a spoiled or cranky young child that I have little control over. There are good days and bad for no obvious or predictable reason. There are periods of time I feel like I have it figured how to balance and optimize my energy levels and then as quickly as I find the formula for organizing and maintaining, it slips away for no reason.

I am beginning to question if my frustration stems from how blessed I have been in the past. Although I have certainly endured my share of life’s pain and grief, for the most part, it has been a wonderfully successful and happy life. If I did not have such a magnificent life, would these current life changes be so frustrating?

Instead of mourning my current life style losses, perhaps I should begin truly celebrating those things that I had. I do not fear dying anywhere near as much as I am afraid of not being able to celebrate the rest of my life with the meaning and purpose I have known.

I wonder if my friends and family understand this.

Saturday, May 29, 2010

Getting off the Shelf!

I have had such a difficult time explaining doctor visits to friends and family when they want to know how they went. My answer is always an emotional regurgitation of medical jargon, which frankly does not mean much to me.

As a child, I had a doll whose arm broke off at the shoulder joint, my Dad was able to repair it with a dollop of glue. The repair came with a warning that the arm would not move as it used to, but I could still play with her.

Until last week, it felt like the doctor's single concentration was how to make my heart last as long as possible. As goofy as this may sound,these feelings reminded me of asking my dad to fix my broken doll. I did not expect a "good as new result" but I knew he would try to make it better. It would have been easier for my father to simply place the doll up on the shelf with her arm carefully placed to look like it was not broken, then tell me not to touch or play with her any more. I would still have my pretty doll to look at for a long time, I just could not play with her.

It has felt, for quite some time that like the doctors had placed me carefully up on the shelf.

I need to function even if there are limitations or risks. I do not want to be the broken doll on the shelf we all look at it and remember how much fun it used to be to play with.

The HF clinic (Donna) promises to work with me to achieve two things, optimize my heart function/life and keep me out of the hospital. Finally, someone understands that I am no longer interested in focusing on what is wrong with my heart; I want to know how to best use what is left of my heart.

Someone finally hears me!

I am getting off of the "I am broken" shelf!

Tuesday, May 25, 2010

Surprise!

After all, of my recent doctor/hospital experiences I have ample evidence that supports my statement “caring interested engaged health care professional are only found on sappy TV shows and in my wishful imagination”.

I expected another dose of the health care that I had become accustomed to and felt like the next visit to The Heart Failure Clinic would be the same, if not worse. As much as I truly understand what kind of shape my heart is in, there will always be this little thread of hope that runs in the background. Just the words heart failure sounded like I was cutting my last little thread. It was not hard to figure out why I was not anxious to go to some place called The Heart Failure Clinic. Not only did the heart failure clinic have all of my personal negative baggage working against it, it also has a dubious location in the Orange County Health department building, downtown Orlando, on the corner of Westmoreland and Pine, one block off Paramore St. If you live in the area, you have the picture, and it is not pretty!

I approached this appointment with all the defenses I could muster up. However, I was incredibly surprised and amazed when everything I imagined and prepared for turned out to be so wrong! Although the actual location did in fact live up to all of my scary expectations, the people that run this clinic were the most caring, considerate, professional, medical practitioners I have ever been involved with! They are awesome and I am grateful that I am in their care. They are the first ones that understand this situation has a physical and emotional part. I am not a hopeless case because they cannot “fix it”. I look forward to partnering with them to create the most optimal life available to me.
Thank you Universe!

Tuesday, May 11, 2010

Why?

I am very sad today, uncertain why today, although I think it has been coming on for some time. Perhaps the approaching appointment with the heart failure clinic is forcing me to acknowledge that I do not get to get better this time. I want desperately not to be sick. There is no real pain, so I think it easy to fool myself most of the time. An occasional tightness in my chest and some light-headedness are the only real symptoms. There are bouts of horrible forgetfulness followed by periods of emotional desperation that hurt more than the actual physical pain. Today I am so physically tired and asking myself why. I went on line looking for more information about how long this will last, and what I can do to make it stop. I found information about all the wonderful drugs (all the ones I take) that will prolong life. Today I am asking why I want to prolong the way I feel, tired, unproductive and useless. Why?

Monday, May 10, 2010

Great Friends Will....

-never treat you like you are sick

-ask you to come out and play (just like before)

-ask questions and know I will answer honestly, but, I will not be making regular "disease update" announcements

-will know that I am scared, but still want to laugh

-will let me help THEM

-will not be afraid of me

Saturday, May 1, 2010

I Am Blessed!

To have people in my life that remind me regularly that I have a marvelous outrageos life and that everyday is a gift! Thank you, my very special VOG friends!

Friday, April 30, 2010

Stay Away from Doctors!

I have a new philosophy…. Stay away from doctors!

I am not here to say they are all self serving, but my recent experience is certainly not flattering to the medical industry and the Hippocratic oath.

I suspect there is a liability insurance bean counter somewhere that is counting the “deaths on their watch” and marking them down as liabilities.

I have decided to quit submitting myself to any more rejections and humility, so the plan is to stay away from doctors all together. I will try out the heart failure clinic, but by not allowing myself to get excited or to look forward to counting on them for help and support. I have had appointments to lots of doctors and clinics that turned me down once I was there. There is nothing that indicates this will not happen again. When I have opened myself enough and depended the medical industry to help it has always ended up in disaster. Some how I thought the rules would change a bit if I was paying (or in my case Medicaid) people-doctors to care about me. I expected them to help, to care. I was wrong.

Here it is, they will not care about me even when they are paid to! (I suspect Medicaid does not pay them enough to care)

I have no intention of mounting a big campaign to fix it, I do not have the time or the energy when the simple solution is to just eliminate doctors.

I am staying away from doctors!

OOOOweeeee, Thinking my Big Girl Panties have been lost in the Laundry for weeks now!

Tuesday, April 27, 2010

Do Not Get Sick!!

Let's see, in the past 3 months I have been turned away by 4 doctors. 4 doctors that accept medicaid. I am not excited or proud that I have had to resort to medicaid for medical help, but in this economy it was all I had. In the beginning I felt extremely lucky to have gotten it. Now I am not so sure it was my best move. It is hard for me to determine whether I am being turned down because I have a terminal heart disease and am most certainly a liability to any doctor that takes me on as a patient or that this is just another casualty of the current economy. With uncertain political health care situations, I am beginning to feel like this may also factor into why so many doctors have turned me down.

Regardless of the reason, I am exhausted. I do not feel any better than a beggar on the street corner with a tin cup watching everyone pass me by in disgust.

I am not certain I knew what death and dying would feel like, but I had never factored in rejection and humulity as part of the process. I am really tired, physically because of my heart and today was the last rejection I think I can handle emotionally. This has been an awful experience and quite frankly I am finished with it. I remember a wonderful quote "no one can make you feel bad about yourself without your permission" (I am certain that is paraphrased incorrectly, but you get the point). My body is making me feel bad enough without my permission, I will be damned if I will let anyone else do that to me. So, no more doctors, no more being denied and rejected. Just me and what ever I have left.

Sunday, April 25, 2010

Where Are the Rules???

Stumbling through this has been an eye opening experience. I am beginning to think the emotions I am traveling through are just part of the grieving process, described by Elizabeth Kubler Ross in her book on death and dying. Is this what is happening to me? Am I ready? Was working so hard to get medical help just part of my personal denial process? I have thousands of questions and no one to help me find the answers. Shouldn't there be help and counseling out there or is this something we all must do on our own?

Where are the rules on how to do this?
Am reading a new book on living fully through the last stages of life, stay tuned, maybe the answers are in this book.

Thursday, April 8, 2010

Beginning of the End?

Some serious wound licking and I am back in the saddle. Had some new symptoms last week, not painful but scary none the less. Enough to get me back into a local cardiology office sooner than I had planned. Going in to have some tests tomorrow and then will be sent to Florida Hospital’s Heart Failure Clinic for management. Not sure exactly what “management" means, Life management-Death management-Disease management not sure which? I am guessing I will be finding out soon. Apparently new symptoms are just the natural progression of this situation. Most cardiologists, in general have the worst bed side manner and disgusting god sized egos. I find them incredibly toxic. Today’s guy was not as bad as most, although I would not go so far as to call him personable he was more likeable than any I have seen. Maybe this is some kind of new beginning of the end.

Thursday, March 25, 2010

Wrong Answers

Waiting and whining and the answer is no. I left a hospital with the knowledge this was bad, and most probably would not have a happy ending, and as goofy as it sounds, I was ok with that. Maybe the reality had not sunk in, or maybe it was before hope took hold.

Hope took hold. It was like a little light at the end of a long tunnel, all I had to do was be strong, keep working and keep hoping. As it turns out hope is like a rainbow, it is pretty but as soon as you get close to it, it vanishes.

This is the last no. I have wasted the last 6 months of my life chasing a rainbow and avoiding the shadows. The shadows had all of the answers that I knew in my heart, but would not look at.

I am not sure what happens next, I have been excluded from stem cell research, and declined for surgery. It is time for the roller coaster to stop. The hope has to stop, so acceptance and living can go on.

Monday, March 22, 2010

Thinking to myself... visually Out Loud!

VOG exercise was to create a "doll" (this one is out of clay)this is kind of interesting, even to me. What I am unable to talk about seems to be slipping through my fingers with clay. I know I am supose to be grateful that this wonderful technology is available and you know what.........I am afraid with a high risk heart surgeon back in the picture that LVAD is being put back on the table. I am so afraid...

Left Ventricular Assist Device a pump implanted in the chest, run by external power.

Big Girl Panties in the Wash

Almost 1 week later...No call-no news...Sent an email on Friday, and the reply was, "I should have heard something by now" They will look into it. I am exhausted, physically and emotionally and almost at the point where it just does not matter any more...whine-whine-whine! Big Girl Pantines must be in the wash today.

Tuesday, March 16, 2010

Roller Coaster Ride!

And it goes on…..spending days, weeks waiting to get going with the stem cell research, finally the phone call I have been waiting for comes from the Shands Cardio-pulmonary office, but NOT with the info to start the stem cell research that I have been waiting for.
Another ride is starting. The thoracic surgeons reviewed the film and now I am waiting for a surgeon to call. When I looked him up on the internet, he is a high-risk cardiac surgeon that participates in a lot of clinical trials and research. Not sure where I am headed, another clinical trial, surgical or just a high-risk surgical procedure. Either way it feels like a brand new ride and I waiting on another phone call.

I never really thought much about how much control each of us has over our own lives, I always felt like I was in charge. I am learning that I was wrong.

Sunday, March 14, 2010

Gratitude

It is so very easy to get caught up in all of the things I do not have anymore, than to focus on the goodies that are still here. Be grateful…another platitude declared by those that really do not have a clue!
Like most important things in life, gratitude is easier said than done. So I am still learning.
But, I will not lie, I would love nothing more than to have it all back! and I am angry from time to time. Most often here!

Saturday, March 13, 2010

No News... is Good News???

That is what they say....So who the hell is "they"?

Although on the outside my friends and family constantly comment on how well I am "doing" on the inside I am screaming at the top of my lungs. Screaming for all I am worth. Half of me dying to be heard, the other half scared I will be heard.

I finally screwed up the courage to email Shands to check on my status in the stem cell research. They replied quickly but, there was no information in the answer. "The surgeons are still looking at the films, no official report yet, I expect it sometime this week" That was on Monday today is Saturday, the films they are referring to were made 21 days ago.

Don't they understand that this is my life? Don't they understand this is important?

Thursday, February 25, 2010

Waiting....Waiting....Waiting.....Waiting....

No word from Shands- Do they understand?

Struggling with focusing on positive... Understanding that there is positive out there, it needs my patience (patience that I had precious little of, before all of this started). In the mean time, I keep myself busy with Artist Way Weekend! My favorite weekend of the entire year. Better than Christmas!

Monday, February 22, 2010

“The heart has reasons that reason (or doctors) cannot know.”

Am not certain if writing about this experience is helpful or hurtful, it carries both emotions. The fact is, that if I this was exciting, wonderful and happy news I would be screaming from every street corner, face book, email etc. not posting clinical results on an obscure blog.

I had really been excited and was looking forward to the second visit to Shands Hospital (University of Florida, Gainesville) and the tests scheduled last week. I have been feeling so much better recently and was certain that significant healing was well under way. I am thinking that much of this feeling is due to my awesome family and a phenomenal group of artists that get together every Friday night to share the book "Veins of Gold” journey to the creative heart. Oh yea, there is a little wine and chocolate, too!

The first visit to Shands was to confirm me as a possible candidate for the stem cell research. Questions about the original diagnosis opened up the possibility that there might still be a chance for by-pass surgery. The doctors felt that until all chances of by-pass were completely explored and ruled out I could not participate in the stem cell study and they scheduled the exploratory heart catheter to make that determination. I saw all of this new testing as the possibility that there had been significant healing.


The best way to determine if there had been any change was to do another heart catheter and compare the new results with first results done in October. They would be looking to see if the heart damage was old and unrecoverable heart damage or new damage caused by the heart attack that and possibly mitigated by the stint that was put in. A heart catheter, is a way of looking at the inside of the heart by running a tube from the artery in the groin up into the heart. They inject dye and take pictures. The procedure does not take that long, but they keep you around for the rest of the day just to monitor place where they went into the artery. Quite frankly, it is a bit unnerving to have so many people paying this much attention to my crotch....**$#@*()


I believed strongly that there was significant healing, so I was really looking forward to getting some good news. It was difficult and incredibly disappointing to hear “no change". Dr. Anderson (the Shands cardiologist) said the occluded Left Anterior Descending artery is not restorable and the gross left ventricle damage would not improve with revascularization (big word for restoring blood to the damaged part of the heart, I’m beginning to pick up the lingo). The occluded Right Coronary Artery could possibly be by passed, but there would not be enough restoration to justify the risk.


Dr. Anderson will be submitting the heart catheter report and his opinion to the Shands cardiac surgical team, apparently they are the ones that pass the final and the official diagnosis. We were told to assume the surgeons will agree with his assessment and I will officially be diagnosed with irreversible and terminal heart failure. With this diagnosis I will most likely be accepted into cardiac stem cell research program. I am grateful that the stem cell study remains a possibility and will focus on the positive outcomes that the study can offer.

I remind myself and all that love me, that the best, strongest most amazing part of who I am- cannot be measured with rulers or medical tests. I am on this path for a reason.

Monday, February 1, 2010

Cardiac Stem Cell Clinical Trial

Cardiac Stem cell research is a new study to see if adult stem cells from bone marrow can help and a heart regenerate damaged muscle tissue I have explored alternative treatments for my situation and have agressively applied to participate in cardiac stem cell trials all over the country. I really like that it is my body that would be healing my body! I had been accepted at John Hopkins in MD, but at the last minute they opted out thinking the travel back and forth may be too difficult. I have also been turned down by a lot of other stem cell studies, unable to meet study criteria for one reason or another.

A few weeks ago I was tickled that Shands (University of Florida) responded to my application to be included in their stem cell study. I drove up last Friday(1-29-10) to Gainesville with my best long time friend Terry and met with some really wonderful nurses and doctors for the initial stages of the clinical trial. Based on the films from my previous heart catheter, the Shands doctors are thinking there is a chance I might now be a candidate for surgery. I cannot be a part of this study unless there are absolutely no other viable options.

I am now working on scheduling another heart catheter to assess the actual make up of the damage (maybe I have some cool heart healing on my own) and then we will go from there! It will either be on with the stem cell clinical trial or another shot at heart surgery.

Will let you know, what I know, when I know it