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!"


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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!