In the past, I have been hospitalized many times with pneumonia. Pneumonia in all of its various incarnations. These past few weeks, I have been struggling with it again.
A few years ago, I was in ICU for a few weeks with a particular kind of pneumonia, and was given massive doses of IV Prednisone.
The choices were simple: die or take the prednisone.
We all knew the risks and the risks came home to roost.
Avascular necrosis does not elegantly creep up on you. When your bones die and break, they die and break. As a writer, one of my generic challenges was always to find different or novel ways to describe pain. I no longer write for publication.
Another break.
I was in Santa Fe one night, walking around the Plaza, on my way to the La Fonda where I was attending a literary awards dinner and accepting an award. I had never received an award like that before.
I was wearing Tony Lama cowboy boots. When in Rome.
I heard the hip bone break a fraction of a second before it registered as pain. Then, I fell.
There was nothing — bones or no bones — that was going to stop me from accepting that award. For me, it was a lot of money. I needed money. For medication. Now this.
I gave a speech that night to a packed house of literary types. My speech was about the need to teach children how to read and write. Especially children in the undeveloped world and that meant a lot of the State of New Mexico.
I did it through a wall of seething pain. Those massive doses of Prednisone had started the process of bone death. Describing the pain from your bones dying inside your body is beyond my ability to articulate. It’s horrifying.
It was not in my head. Subsequent MRIs confirmed avascular necrosis as one more diagnosis added on top of a heap of them.
In no time, both hips and both shoulders were riddled with fractures. I was in a wheelchair and living on enough fentanyl to kill a horse, and, of course, was completely addicted.
So getting pneumonia was something I took very seriously. I would come down with it time and time again. After one long flight, I came down with both pneumonia and big blood clots to the lungs. They were ready to close the casket cover on that one. But I am a real screaming bitch as a patient. I ask questions. I read ALL the literature. I DEMAND treatment. I fight for medical care. In fact, fighting for medical care is now my life. I have had too many physicians look me squarely in the eye and say: you are going to die.
Don’t bet on it.
We are all going to die. But I am not going willingly and not without a fight. I fight with the system and I fight for the money to pay for it. I am NOT giving up. I like being here.
I have now had multiple surgeries to replace body parts. Especially dead bone. It used to be relatively rare to be able to do this. But medicine has made major strides and I am glad to be around to take advantage of them. I am up, walking around on spare parts, thinking, talking, making art, bitching, and still not willing to settle for a life that would be more existence than a real life. Existence is not enough.
It has to be about something or why are you here.
Yesterday, I was back in the hospital and back on Prednisone. Fuck. Fuck. Fuck. The new inhalers are really powerful.
It’s the high fevers that knock me out. The fevers cause enormous pain with the artificial joints. You can feel the steel in you as your body swells around it.
The Vicodin cough medicine is trippy. Although I hold no illusions about opiates or steroids. They can be necessary evils. I am on twenty-three medications, now, whose total cost comes to $3,846.72 a week. I do not know how a medical system can sustain this. Even if I was on public assistance which I am not (I am told that I do not qualify because they cannot determine how much money I might make in any given week since I still freelance everything and public assistance seems to require some kind of predictability that I cannot either create or recreate even when no income at all equals no income at all), you are limited to 16 medications in any given month and I am already way past that number.
But I am still breathing. Spare parts or no spare parts. My medical bills are now way over the million dollar mark.
I have met good people and bad people in the system. At the moment, the good people outweigh the bad people, but that can change in a flash, and I know it.
The University of North Carolina medical system was a NIGHTMARE of mistakes. I am always on the lookout for them and found them there in abundance. It’s a huge system where people are just numbers. Duke University was entirely different. Far more cutting edge. Far more caring. Far more willing to fight for me. As institutions, it’s night and day.
What a great day to be alive. The Blueridge mountain air is crisp as crackerjacks. I savor every breath of it.
SHOW ME YOUR LIFE
http://Cinematheque@europe.com
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