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.

Monday, February 28, 2011

Food Stamps

My neighborhood is a poor one. No matter what your station in life, it never hurts to kiss up to the cook.
Food pantries distribute donated food to anyone who wants it; you don't need to show an ID or give your name. The people who volunteer their time there are among the finest folks you'll ever have the pleasure of meeting.
The food is toxic. Real food is displayed for sale until it starts to turn and then is thrown away and written off for tax purposes.
The available at a food pantry items are processed products nearing expiration date. They are mostly chemicals engineered to resemble baked goods. Produce is scarce. The proteins are hallucinations of nutrition; extruded paste formed into canned or frozen servings containing less than 50% meat.
The prepared food is more appealing, but nourishes the soul more then the body. When I couldn't navigate the serving line on my cane, Keith's staff of volunteers served me as if I were a paying customer. I can not overstate the significance of this dignifying gesture.
I couldn't get well on a glycemic diet of pastry and pasta. I needed to apply for food stamps, like one of those people. This was a nightmare.
The Massachusetts Department of Transitional assistance (DTA) is a huge stinking mess. I got off the elevator to a sea of people. The line was the length of a city block and twice as wide. Ragged, drunk and crazy people from every continent in an un-airconditioned lobby with water from over-flowing toilets seeping across the carpet. I witnessed violence that afternoon: child abuse, elder abuse and spousal abuse. Waiting.
After a few hours of moving slowly down the hallway. I realized it was set up like a deli. You had to go to the front of the line to get a number on a ticket, then go back to the end of the line and wait to be called. I was in the line, but had no ticket to speak with a DTA receptionist. I had squandered my visit there.
At that time, I was only out of bed for several hours a day, and needed to leave and go home.
I knew the lay of the land now and would return the next day with a book and a snack.

Thursday, February 3, 2011

Ghetto Optometrist (part two)

Once again, I thought the argument was settled. Once again, I was wrong!
I had picked a pair of frames and the optometrist had ordered them for my "larger than average head". In a few weeks, I'd have new spectacles.
When they didn't arrive, I was dissapointed but not surprised. I called the Optometrist's ticket-scratching office manager.
"Oh, I've been calling and calling!" she lied "I've left you about a billion messages". The chances she left a billion messages that I never got on either of two phones is even less then that of winning the lottery.
"The root beer frames don't come in your size"
"You said they did, that's why you ordered them for me"
"Well, they used to, but now they only come in black with silver hardware"
I'm a "fall" for Christ's sake, silver is to cool for me, but even I get tired of arguing (sometimes), so I said OK. Another 4-6 weeks was added to my wait.
Considering the appointment with my primary care physician to get a referral to an ophthalmologist, then taking the prescription for glasses to the ghetto optometrist, then missing "billions" of messages, I was already into this single pair of spectacles for over four months. I could conjure a spectacle of hell faster than that.
I stopped by the office every once in awhile to check on the status of my order. Never calling a public health insurance patient is a way to discourage poverty clients from seeking services. Smart? Yes. Nice? No.
When my black frames with silver hardware came in I went to pick them up. The office manager had them in a box and in a shopping bag. I sat down to try them on uninvited. There was much unpacking to do.
Although she assured me the glasses looked great, they were too small. She had ordered the other color in the wrong size.
The arms of the frames reached the top of my ear, but not behind, so the frames tilted forward at the end of my nose dra-ma-tically. The office manager gambled that I might be talked into them.
"Well, this is exactly what you ordered" now she was using a tone.
I turned to face the audience in the waiting room. Without a word a young couple laughed out loud at my Jerry Lewis visage. In a universal gesture of good humor, the young mother waved "hello" with her baby's tiny arm. I was ridiculous in these.
"OK, have it your way, I ordered these; The sign says "glasses fitted", you and a licensed doctor directed me to use my voucher on these, and are you going to let me, or any patient from Mass Health out of the office with glasses that make babies laugh. Is that your position?" To this blurry eyed consumer, it seemed they were responsible for this either way.
"I can fix this" she said. "Mass Health gives you two pair, I'll just put in for the other..."
"Wait," I said, "You won't double bill Mass Health"
At this point, the big optometrist, the Dr that owns the practice interrupted her fitting with another client to jump up and say:
"Mass Health didn't pay me the first time, what makes me think they would pay me again!"
"Are you trying to intimidate me?" I asked.
"No, I'm trying to explain Mass health doesn't pay very much"
"Which is it? They don't pay you very much or they didn't pay you the first time?" I knew I was winning. The truth is easy.
"Everyone Quiet!" shouted the office manager "Please everyone calm down"
The fat doctor sat back down and apologized to her other clients for her outburst, "it's just that I get so mad" she said.
My handler was apologizing to me also, like I cared. I wasn't there for human interaction, I was there for glasses. I prefer reading.
"you're attempt to defraud Mass. health is bad enough. That voucher is for me to have two pair of glasses, not to cover your mistakes, but now the fat doctor has humiliated me in front of the staff, the other clients and my neighbors, this is a HIPAA violation at least. I'd wager more than one crime has been committed here today." There. I said it.
"Listen" she whispered.
"No" I said, "I'm too angry to listen, I'm calling 911 for an incident report and taking an ambulance (I still couldn't walk) to another optometrist, you shouldn't have rolled the dice this time."
"I'M SORRY" shrieked fatty, all sweaty now. She hustled the others out of the frame gallery.
I said I was leaving and that I did not want to be alone with her, but she moved faster than I did. The slat walls of frames slid on tracks. Open, they connected the lobby and waiting area to the exam bays, closed they made a too small room for just the two us. All over a friggin' pair of readers.
"Look, why should I pay for your glasses?" she demanded.
"Because you are responsible for the mistakes of you gambling employee and hungover assistant."
"Who's gambling, who's hungover?"
"You don't have time to notice laundering drug money and all"
She shrieked a syllable I can not spell.
"The people of Chelsea don't need you taking vouchers for $50.00 and then another $350.00 in cash for frames. You are part of the problem."
She lied "I came to Chelsea to help people!"
"You inherited this practice from your father" I corrected.
She looked confused and frightened. How could anyone know what was clearly printed on the sign out front?
"I want a pair of glasses" I said "and soon, I've been without for almost six months because of your failures here."
"I can't do it on a rush, I don't grind the lenses here"
"Then turn in a favor and get 'em done, I don't want to be ever again, but I'll come everyday if you want..."
"No, no please don't, I'll get them"
And she did!
I've left out much of the back and forth, I was outnumbered and it was arduous. At times they had me confused, but the whole thing is a hustle. If you want free glasses from public health care they treat you like crap until you go away. And it always works and it worked with me, but at least I left with a pair of glasses. 8-)

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.

Tuesday, December 14, 2010

singing lessons

I was in desperate need of cardiovascular rehabilitation.
Physical therapy was the next obvious step for me, but I couldn't do it. Because of my problem with drugs and alcohol I had refused the oxy and vicoden, but now I was in too much pain to exercise. My muscles hadn't atrophied, but they had become full of lactic acid from disuse. The physical therapists were afraid to work with me. I was in too much pain.
If you picture a skull and crossbones, you can imagine where the bones flare out at the end with two knobs. This is where the tendons connect the bone to the muscle. That is the reason for the additional mass at the end of the bone; to support the connective tissue that allows our joints to move. I am missing a lot of that bone. No knobs.
My situation was spiraling downward, I couldn't move (intermittent paralysis) because I was sick; and I couldn't get better because I couldn't move. I had to get my blood pumping.
Along time ago, when mohawks ruled the earth, I sang. Singing is quite a workout if you're doing it right. I reasoned I could begin my cardiovascular rehabilitation singing. I brought this up to my Doctor and her gentle, pitiful encouragement really clued me in that she wasn't 100% on board with my whole "get better" scheme. Luckily for this Celtic warrior, fear rises to rage in just a short while. So now I'm motivated to get well to spite my Doctor. Fa-lalala-la!
I rounded up a few players to jam some tunes in a friend's house. Bossa's, blues and Bacharach in the basement. My ankles were too lifeless to step over the music cables snaking this way and that across the floor, I shuffled to a bar-stool (insert irony here), and sat in front of a mic.
Unlike riding a bicycle, elephants do forget and it took me a few trys to find my voice. I could feel this working.
The musicians came and went in a blur of dirty jokes and stolen riffs. Lyrics from the radio, chords from the web. I added voice lessons to my regimen. Pretty soon we had a group meeting once a week covering Otis, Aretha, Sam and Dave. And pretty soon I was well enough to go to the gym, my cardio rehab had begun.
"The Hep-tet" is now a nine piece classic R&B band, with a horn section!