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!"


.

.

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?