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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Music is loading really slow lately...sorry...

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.