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.

Saturday, January 29, 2011

Ghetto Optomitrist

Sooner or later we all need glasses, so in the midst of my other medical challenges, I made an appointment with an optometrist.
In Chelsea.
The office manager was trying to convince the new receptionist to spend the change from their lunches on lottery tickets, so they could all split the pot. This new hire didn't speak enough English to explain her religion forbids gambling. Her white boss pushed: "You're Catholic, just like me".
"Catholicism in El Salvador is different from Catholicism in Saugus" I said, interrupting.
"I'M FROM EVERETT!" she corrected me. Big whoop.
At first I didn't understand the sell up; I have a voucher from my health insurance good for two pair of glasses every five years. Seems good, but everyone in the office (the entire staff) was trying to convince me to "add a little" to the voucher to get designer frames. The voucher is worth about $50.00, the designer frames, $400.00. An additional $350.00 dollars was not an option for me, I'd have to glue on the rhinestones myself.
The optometrist was not amused. She was hungover.
After much negativity I demanded to be shown glasses in my price range the would fit my "unusually large head".
"It's an ethnic trait" I beamed at the boozy Korean Doctor, "Like alcoholism, big heads run in families"
She tossed a box of frames on the table so aggressively the box popped open and frames fell across the table and onto the floor. I made no attempt to catch them, or even brush the one pair off my lap. She was startled by her own self and barked a single syllable toward the waiting area and stormed away. Exam bay curtains don't give the same satisfactory SLAM a door would; but she tried God bless her, she tried.
The office manager came scurrying into the frame gallery apologizing and asking "What's all this now?" simultaneously.
I was so fat I don't think people could tell I was also swollen. Every joint swollen. Doctors call this "global inflammation". I despise this phrase.
She steadied herself on my shoulder as she bent at the knee to pick up frames from the floor and my lap. Stunned by pain, I ordered her not to touch me.
Of course, she was all blah, blah, blah. I was so over it.
I didn't want to explain. "You have no right to touch me without my permission."
But I needed to end this argument before I passed out or puked, I was seeing stars from where she had put her weight on my shoulder. Under normal circumstances, a person would just squirm away from another's unwelcome touch, but I couldn't move like that. I was momentarily paralyzed with pain, a neurologically over-loaded statue.
Except for my mouth, which still worked great.
Her mouth was working pretty well too, she wouldn't shut up.
"Are you defending you're right to touch my lap? That's a gamble. A gamble I wouldn't take."
Stunned silence, not exactly detente, but better than nothing.
I had the floor "I've gotten nothing but shit from you people since I walked in the door with my poverty health card and I don't want to hear anymore crap. Put the glasses that come in my size, and that I can afford, on the table and I will choose a pair".
There was nothing for me to try on, but she would order them. They would be ready in 4-6 weeks, or would they?

Monday, January 24, 2011

Customer Complaits

At a restaurant, you can always find a way to complain about poor service.
At Massachusetts General Hospital it's not so easy as ketchup graffiti.
After I realized I could not trust Nurse Lisa to care for me, I felt it was only proper to notify the management. MGH, like many modern bureaucracy's, has precluded the possibility of lodging complaints directly to a nurse's floor or department with the automated phone tree. There is not a complaint dept on the menu.
My problem was not just that I needed to complain about an unacceptable comment from an employee that seemed high; I needed another nurse, STAT.
I left voice mails in every box, but no one responded. The patient advocate department at the hospital takes complaints and issues confirmation numbers, like in "Last Exit To Eden". They could log my complaint, but I would still be reporting to Nurse Lisa.
I informed my Doctor on my next visit that she would no longer be my nurse. He said she was the only nurse on the floor and that I was stuck with her. I requested a referral to another rheumatologist, this got his attention. He could not hide his dismay at the way I had been treated. He offered to have her apologize to me, I said that would only be acceptable in writing, he withdrew the offer of an apology and changed his tactic.
"You're willing to leave my practice over this?" Like a jilted lover "But you've done so well here!"
It was this simple: "I'm never going to be in the same room with her again, and if she enters the room I'm call 911"
With much bullshit he responded "My Nurse is a highly educated and dedicated professional"
"Does you wife know?" I trapped.
"Know what?" awestruck.
"That you think Hootie MacBoobity is a Highly educated professional? I mean, can you say that in public?"
"Why are you like this?" he whined.
I tore into the serious flaws of The Yawkey Center in general and his staff in particular. It was going to be my way, or the referral to another Doctor and an exit interview with his supervisor. I didn't have any idea who that supervisor might be, but everyone has one, so this threat usually sounds works.
The good Doctor asked me for 90 days to find a solution, out of respect for his unique diagnostic abilities I agreed.
"But this is it" I warned "after this, we're even"
On my next few visits, I never saw the nurse who had denigrated my poverty, I saw only the Doctor. This was some of the best care I ever received, and at the most critical time. It's funny how things work out.
At the end of the 90 days he told me he was moving his practice, and thanked me for helping him make the decision to leave The Yawkey Center.
I was relieved we could part friends, 'cause I was ready to kick his career in the nuts.

Monday, January 17, 2011

Diet and Exercise

I love food.
And not just because it tastes good. The physical act of eating takes the pain away; at least until you get fat.
When other kids were outside playing, I was glued to "The French Chef" and "Dark Shadows". Food and drink.
My joints were too swollen for me to tie shoe laces never mind work out at the gym, singing lessons gave me an initial cardio workout, but I still needed more.
My sister Kris told me about "The Blood Type Diet" and gave me a book about it. I collect cook books and diet books. This "Eat Right For Your Blood Type" book is unlike all the others. It not about calories or grams of fat; it is about what foods are most beneficial for your blood type.
The science behind it is gorgeous, if you're into that stuff. The anti-inflammatory protocol for my blood-type is complicated and I am still learning it, but it is well worth the effort. I felt a difference right away by just avoiding a few things that I had always considered wholesome and healthy. The food lists are different for everyone, so I won't go into it here. If you're curios, search it.
I took the diet book and a bag full of nutritional supplements to a couple of different Doctors. I was a little pissed neither of them were aware my prescriptions all came with literature advising this practice. I was the only guy asking all these questions and, wrongly, my questions were unwelcome. I enjoy righting wrongs.
My rheumatologist had been to my rodeo before, so he opened with his best shot,
"What's all this shit?" He complained about the book and bottles on his desk.
After just a few a few minuets, I busted this bronc.
He admitted he had been dismissive of "The Blood Type Diet" and churlish, but the fact was he "couldn't comment on it", because he wasn't trained to. I read between the lines: "or insured to".
He was none-the-less confounded at my transformation. This was just the beginning, and already more than he had hoped for, I was using my hands and on my way to walking un-aided. It's hard to argue with success.
For me, it's just plain hard not to argue.
I had insulted and threatened this guy in a fearful rage only weeks ago, now I was his pride and joy. This is an uncomfortable role for me.
"Keep doing your own research, and don't apologize for being angry", he told me.
"Angry patients get better, proactive patients get well, keep doing what you're doing"
In exchange for his reluctant approval of my diet regimen, I allowed him to drag me around the hospital, introducing me to his colleagues and showing me off to his friends. Frankly, getting escorted off the property by security would have been less awkward for me.
I realized they don't have a lot of wins in the medical biz. The whole staff wanted to meet me, to shake my hand. I was taught to fan my fingers out so no one would be tempted to squeeze my fragile bones.
Dr Kay was not an all knowing oracle or a soulless bureaucrat. He's just a guy, and that's scary. He was proud of me, the patient from Hell. That's an odd kind of sad.
You might as well try the blood-type diet; you've tried everything else!
Thanks Kris!

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.