We are all capable or more than we realize. I fought for my own survival, and so can you. Everyone has a piece of the puzzle. Blogging makes mine ours. Joy is possible even in dire circumstances. You're welcome to travel down the the road with me a piece.

Tuesday, January 11, 2011

Disco Gypsy

Some of my best friends are "Disco Gypsies"; I have nothing against disco gypsies per se.
After some struggles with my primary care physician, I finally got a referral to a big-shot specialist. My insurance had refused to pay for anymore visits to new Doctors. I played the "cultural competency" card. I said, before I went home to have my foot chopped off, I wanted to talk to a Doctor that was from New England and educated in Boston. My Doctor attempted to label me a racist once again. I said the specialist didn't have to be white, but they had to know the difference between "pissa" and "awesome", what "Durgin" Park is, and both "Gardens".
When I arrived at the richy-rich rheumatology clinic, it was a different world. Chelsea MGH is furnished like a public high school cafeteria, the Yawkey Center is furnished like a boutique hotel. The receptionist, to apologize to her superior, held my Mass Health card between her finger and thumb like it was filthy. They shared this joke openly, in a busy reception area. Written law says they have to let me in; unwritten law states otherwise.
My Rheumatologist prescribed an "off label" medication for me. He would have to appeal to Mass Health for them to pay for it. He stated flatly that he was not paid to do this and would not.
I tapped the face of his $40,000 Cartier watch and said;
"frat-boy, you seem like a nice guy, but I am in charge here. I don't care who gets in my way or who gets hurt. The answer I'm looking for is YES SIR."
Sometimes, I resent it when people think I'm ghetto. Sometimes, I'm a big fabulous thug.
The "appeal" took fifteen minuets and consisted of a single fax. Rage tastes good but it's bad for you.
A nurse was to instruct me on how to inject myself with "Humira". I hobbled down a long hallway to the infusion lab. Despite it's opulence, this hallway had nowhere to sit. Odd for any institution, bizarre for a rheumatology suite. Someone with "good taste" decorated this hallway with lavishly framed fiber art consisting of masticated paper blobs in happy colors, but they left out chairs.
If you own a hospital, or any institution, please consider hiring a Gay decorator; we love seats!
In the infusion lab, a huge cripple lay painfully on a giant metal gurney. A custom designed cross between a wheel chair and a "Craftmatic" bed, this thing was huge, and obviously inhabited by it's inmate on a permanent basis.
Nearby, a woman, shrunken and fetal, sadly resembled a peanut. I was experiencing a great deal of hormonal activity in my neural peptide.
A sullen girl hovered near-by. Many of the rich folks here were escorted (wheeled around) by hired help, or young relatives.
This young women was annoyed to be there with the sick people. She was dressed for a night on the town; bare mid-drift, bare shoulders, bangles and dangles.
I waited, standing in the hall, for an employee of the hospital to arrive. I didn't want to intrude on anyone's privacy or to be bothered with the peanut lady, Jaba-the-hut, or the disco gypsy.
After a long while, I picked up a house phone, thinking I would request a wheelchair while I waited (I am a quick study, always at home where ever I roam).
She shrieked "FRANCIS!"
So that's either five-0 or bureaucracy staff. Disco gypsy was my nurse. Wait, it gets worse.
Whirlwind of inefficiency, she spins from place to place, gets me situated and then, finally, begins to attend to the others. I am third in this queue. Jaba is silent, peanut chirps like a bird.
"Ohh Nurse Lisa you look so pretty today!"
Nurse Lisa rewards Peanut by adjusting her frail body and smoothing her hair. Then hurries importantly out the door. I could cry.
With astonishing basso profundo Jaba warns me, "She's a real piece of work".
"yeah" chirps Peanut, "I HATE her!"
"Good" I say "I'll hate her too."
His laughter is like an Earthquake, hers is like a smoke alarm.
"What's so funny?' re-entering briskly.
I divert. "They spent a fortune on this beautiful, state of the art facility and there are no chairs." Take that bitch! I think to myself while my new friends beam with delight. You're whole interior design is inadequate.
"You should consider yourself lucky" Nurse Lisa admonished me right in front of my friends.
"No one is lucky to have a life threatening disease Nurse" I hiss. The giant gestures "No" ever so slightly, the tiny one hyperventilates.
"In India, people like you aren't even given wheelchairs"
Oh no she didn't, "WHAT?" I ask.
Her pupils were like dots, her breath minty fresh "You'd just get left on the ground"
"We're not in India" I replied pulling up my pants. I recognized her now, when I'd first seen her, a week before, she was decked out in a different type of costume, laughing at my public health card. By "people like you" she meant poor people.
"Where are you going?" Nurse disco gypsy called after me "who's going to teach you to inject the medicine?"
I only knew it wasn't going to be her. I still worry about the friends I left behind.

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