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!

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!

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?

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!

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

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?

Damn!

more baggage...
more tests...
Damn!
(not as much writing, talking in clay!)

I Am

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?

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!

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!

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.

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!

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...

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!

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!

whine…whine…whine

it’s hot, i am tired, don’t want to play anymore, think i’ll eat some worms.

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.

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.