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, 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!


Wednesday, December 8, 2010

Physical Therapy


I got a lo
t out of physical therapy, because I went to appointments. The reason I could go is that I did not take the pain killers. Physical therapy hurts; pain is taboo, so folks don't show up for their PT sessions. Sitting in front of the TV stoned on Oxy is not taboo, it's ghetto fabulous. Folks seem to dig that. I just really wanted to be able to feed and groom myself (and the other thing), so I bit my lip and took it like a wincing, whining man.
The physical therapists were the first people to tell me I could recover. That I could build muscle to do the work of bone. The wheelchair and narcotics, even amputation were the alternatives. So the effort seemed well worth it. Here, I began to get the feeling that I was alone. Other patients were rolling home to get stoned and here I was trying to stand unaided. Why? Why wont anyone cosign my bullshit?
Luckily, I worked with some fine individuals, I trusted them. Once, a PT lifted my leg up to a forty five degree angle as I lay supine. I lost consciousness from the pain. I came to in a split second. The PT was concerned. She said she couldn't work with me if I was in that much pain. We had discussed this before, Hospital policy demands your pain survey shows improvement, or the insurance cuts you off from further visits.
So I lied. Although I was sober, I said I had a rough night, that it was a bachelor party; and I had just dozed off. She knew it was a lie, but continued for me. (Thanks)
My Doctor was hesitant to give me a referral to a specialist. As yet, I still had no diagnosis and my prognosis was poor. I wanted more information, but there were bureaucratic obstacles to my health care. After months of demanding I was reduced to begging. Why couldn't I see another Doctor? Public health insurance wouldn't pay for it? Why not?
The Primary Care Physician is a gate keeper, to open the gate, I needed to supply her with a question to be answered by the specialist. A question that would satisfy the paperwork for bureaucracy and justify the referral.
The Physical therapist believed in the possibility of my complete recovery; I asked her to help me phrase the question. A sexy fire of indignation glowed in her dark eyes. Across an entire page of her office stationary she wrote in felt tip.
"WHY CAN'T MR FAY WALK?"

I was misdirected to search for a more clinical question. The stark simplicity of her query pleased me. Her rebellious gleam turned me on. I was going to have to fight wasn't I? This wasn't like a Doctor show on cable at all, this was a Russian novel. I always admired dissidents. Now was my chance, not to be an enemy of the State, but the State health-care machine.
I had my question to bring to my Doctor for the referral to a specialist.
I learned a lot in physical therapy, sometimes good things hurt.

The Podiatrist loses control!


My x-rays and other tests were rolling in, but not really illuminating my condition. I had demanded some appointments with specialists. My Doctor refused me the service, "until I was done with physical therapy"; but I fought her and I got "the referrals".
"Referral" is one of those Orwellian words that insurance companies foist on
healthcare professionals. These decisions are not in the best interest of the patient.
I liked the Podiatrist right away, a ruggedly handsome liberal Sox-fan from Brookline. Speak my language bay-bee.
No one had be able to evaluate my x-rays yet. I knew what to expect when my film appeared on the screen. I'd seen this before: the Doctor or Nurse begins mousing around the border of the screen and asking me questions to verify my identity. The Podiatrist, went past the usual two or three; he turned to me.
"Are you named after your father or grandfather? Were they ever patients here"?
"Yes and no" I replied.
He was starting to scare me, staring at his computer.
"These can't be your x-rays, they're not the x-rays of a living human being"
Terror is a little like acid. And things were getting far-out.
"Those are my x-rays Dr, I recognize them"
He pulled at the sides of his hair and moaned "no,no,no". He rolled his chair back and around too quickly, like a kid. Covering his face with his hands, he jumped up and said, "OhmyGodohmyGodohmyGod".
This is poor protocol for an initial consultation I think.
Sometimes in life we have role reversal. I have encountered this many times with medical professionals and their administrative staff. This is another thing about twentyfirst century medicine Doctor Shows did not prepare me for; the patient never becomes the caregiver on TV.
I said "It's OK Doctor, just tell me"
"This is a perfect storm" he said.
Well obviously, I thought. I was starting to see colors.
He saw my cane (coffee colored aluminum with caramel and bronze swirls from
Duane Read in Manhattan, to match my hats), and squealed "You WALKED from the parking lot?!"
"From my apartment ten blocks away" I confessed, I'm not proud of this. It was insane. The ground was covered in ice, even businesses in Chelsea do not shovel the snow out to the street. Before the "T" awarded me a travel benefit (on appeal), and when my friends couldn't chauffeur, I hobbled slowly down the side of the road. Intermittently seeing stars, I perspired through my clothes.
"How?" he pleaded, "This is devastating bone loss! You should be in a wheelchair!"
There was that word again. "Wheelchair". My primary care physician had chased me around with one trying to make my get in it. To the addict in me, the Oxycontin/wheelchair/carton of cigs lifestyle has a powerful allure. Hard to grasp if you don't get it; indelible if you do. Writing this down is my attempt to say the why and how of what happened. Perhaps this is ineffable.
Once again, I dismissed the offer to give up on my own mobility and roll off with the the bag of benny's and benefits in the silver chair.
"How" he said again. My wet socks and Crocks telling tales.
"Vitamin "R", I knew the answer. "Rage". The Podiatrist stopped and looked at me, hearing what I had said. My examination had begun in earnest.
The Doctor will see you now.
My bad feet, ankles and knees were catching up to me. My earliest memories are of my feet hurting. Everywhere I had walked, I had walked in spite of the pain. I can get angry enough to blow your house down.
"A perfect storm to sink my ship?"
"We don't see this kind of bone loss even in the third world..."
This was like a bad trip and I needed to come down
now.
"The good news is you're finally here"
"I've been trying to get this referral for months" I chided.
"This has been going on for years, maybe congenital.."
"What's been going on?"
"Several things I think, you have a confluence of symptoms, that create a perfect storm..."
He couldn't say it, but I had always known. Joked about it all my life.
Although I was sober and drug free, I knew I was headed for a blackout. Oblivion is my default happy place, which sucks by the way.
We had been talking about one foot, not even the worst one. That's how the tests were allotted, the benefit meted out; only one foot was x-rayed and MRI'd. I knew whatever was wrong with foot one was wrong with the other foot and my hands as well. When the Doctor told me that amputation would stop the spread of osteonecrosis into the trunk, which is fatal, I knew that he meant my prognosis was quad-amputee. He continued to explain but I was gone from the room, only my body was present. My mind was not. I had stuff to think about.
That is no longer my prognosis :-) and the Podiatrist is one of my favorite Doctors. He has no filters, but he's hot.

Saturday, December 4, 2010

Getting out of the Doctor's office without a bag of pills.

Getting out of the Doctor's office without a bag of pills isn't as easy as "just say no". They want you have a little "sumthin' suntin".
I was in the process of getting x-rays, MRI's and other "boy in a bubble" type tests; this means something is wrong. Something is wrong and they can't tell what it is by listening to your heart and shinning a light down your throat. So it's bad!
I was scared, and sober; so I felt scared. Emotions are hard. I was looking out the huge display windows of my gift shop. It was cold and gently raining.
In the park across the street, a junkie slept peacefully in his wheelchair as the wind piled wet leaves against his tires. I knew this could be me soon. This image holds me spellbound. Some are attracted to actors or athletes. I have a disease that glamorizes dehumanization. Others fantasize about trading places with a player who has it all; I fantasize about oblivion. An oblivion to all types of cold and rain. I was scared, and sober; so I felt scared. Emotions are hard.
I had told my Doctor upon meeting her that I was in recovery from alcohol and drug use. Her "Good for YOU!" was more good policy than bon mot. If only it were that simple!
When I declined her first offer of Vicoden, she spoke Street when she offered more.
"Oxy?" she purred, like a Drag Queen in the men's room.
"No" I said, I told you, I'm in recovery.
"Vicoden is perfectly safe for you" she said.
"Who told you that? " I asked.
They always ask us if we have questions, and then take umbrage when we do. Aww.
This health-care professional, and others like her were surprised over and over again when I didn't want drugs, a wheelchair, or an amputation. At one point she said "Don't you get it? You can go home, we're talkin' FULL DISABILITY here!" Like I had won the lottery.
Some people become their diagnosis, this, I would not do. I didn't expect down right adversity from the medical profession.
I requested she make a note on my chart, but the next visit I was offered narcotics again, and then again. I said I was afraid to be alone with her, and I wanted the exam room door open even if I was undressed (Gay). Our confrontation was out of control, she brought up Vicoden once more and I was miserable with temptation. I had calculated the street value of the prescriptions I had refused at $80,000 annually. My resolve halfhearted, my resistance, wavering.
I told my Doctor I wanted a nurse in the exam room with us, that I didn't want to be alone with her if she couldn't remember not to offer me drugs.
She said that was only if the patient was sexually intimidated by the Doctor. She said this in a "nanny, nanny boo-boo" voice. I exploded. Taunting me? No way bitch.
I said I was sexually intimidated by her and that I want a nurse present at all times.
She collapsed in a heap in a chair too small for her and said:
"please don't do this to me..."
'Then make a note on my file; remind yourself not to offer me narcotics.."
"but, everyone can see your file", meaning the nurses and other Doctors.
I pounded the flimsy desk till a pen rolled off, "Make a note!". I was too loud, "Make a note!", out of control, last straw, screaming "DO IT NOW!"
The battle was over but the war rages on. Even now that the crises is over and my life is back to abnormal, I get knocked into orbit around some Doctor unfamiliar with my file offering me something "perfectly"safe, like codeine.
Please don't feed the animals.

Monday, November 29, 2010

I couldn't walk

I was scared by the time I got to see a Doctor for the first time in my sober adult life. Not about my blood pressure, or my (now back to normal) vision, but my feet. My earliest memories are of my feet hurting. Now there were bricks where my feet had been, I could not bend my toes or rotate my ankles. I barley walked in baby steps. Unable to step off a curb unaided I scanned for poles and posts. Uneven pavement caused me to see stars several times daily.
I had seen my share of discrimination: taunted, tormented, denied, hounded and hunted; "marginalized" they call it. This word sucks. Even so, I thought health care would be like a television show; sexy , brilliant professionals that care. I was in for a rough ride.
Right away I was told some bad news and offered a bag of pills and a wheel chair. I didn't want to risk getting high, or getting in the wheelchair (something I had always joked about "looking forward to"). I left with a non-narcotic pain reliever and a cane. I felt like a I had missed a bullet getting out of there without Vicondin or Oxy.
That bad news was: the Doctor didn't know what was wrong with me. The good news was there would be some tests! Lots of 'em.

Saturday, November 27, 2010

Therapy

I had health insurance. My advocate had done his job and was free of me. I could now call the customer service number on the card like everyone else. Membership has it's privileges.
Calling to get an appointment with a Doctor was a hassle,but not the Byzantium of getting coverage.There was a primary care physician in my neighborhood accepting new patients. By Autumn, I could meet her. I knew I needed referrals for an eye exam and therapy. I couldn't shake the nagging suspicion that I'd be better off dead.
I was having trouble with my joints too, real trouble this time. Not the mid-range trouble I had treated with fistfuls of ibuprofen and vodka before I got sober, but meter in the red troubling trouble. I couldn't walk right or eat with utensils.
Wanting to kill myself seemed more urgent somehow, so I tried to get a mental health referral from MGH before meeting my Dr. This was slow going,and I was ticking.And afraid to in through the Emergency Room.
Suddenly after a long time I noticed I could call my insurance company for a mental health referral. Civilization!
This was another rare instance of things working the way they do on TV. I called, got an appointment, and had an intake interview the next day. Exhale.
Just getting the intake interview with North Suffolk Mental Health over with helped me to take the next step and bring my swollen joints to the ER. I was still a few weeks away from meeting my PCP (primary care physician). The ER doc prescribed a steroid, prednisone. This isn't addictive because it makes you high; it's addictive 'cause it makes you young again. In my case, twenty-one.
I was becoming disabled physically and losing my apartment and my business. When I got to the therapist's office, I didn't want to talk about any of that. I spent the next month or so telling a time line of childhood, adolescence and young adulthood. The last thing I though I wanted was another label on my box. Sometimes another label is just what you need. I got a diagnosis, I had identified a problem. I could work on it.

Everything’s all set!

Now I have an advocate to help me process my application for public health insurance, all my ducks are in a row. Finally.
Wait
.
What?
No, it's never that simple. Getting my foot in the door was a real gift of the universe; I don't know how other people do it. I can't delineate every phone call, correspondence and meeting that took place to get my file processed at Network health.
I developed a strategy. Before every phone call I would clear my schedule for a few hours. Make sure I was at home to use a land line, you can't do this with limited minuets or a battery. Then, before dialing, I would use the bathroom, make a snack and lay out some reading material. Now I could wait on hold and be transferred or dropped without bursting into tears. It's also a good idea to get everyone's name and number to their direct line so when the call is dropped during transfer you can pick up where you left off without having to listen carefully to the automated greeting "menu options which may have changed" all over again.
My search for health insurance began in the financial aid office of the Mass Eye and Ear Infirmary, conveniently located in the emergency suite of the hospital, You can speak to a financial aid officer while in cue for triage. This was a reassuring experience. This crew was hip and efficient, unlike their coworkers in every other department I visited, they worked. Now, my connection at Network health told me I couldn't use the insurance retroactively because five months had passed since the original billing date and only new charges would be applied.
The truth is I had begun the process of filing for subsidized health insurance before I saw a Doctor and had done due diligence daily submitting and resubmitting bank statements, tax returns and utility bills. They know they made me jump through hoops. They've heard that excuse before. I needed a lie.
My eye patch had recently come off, and I had an appointment with a primary care physician coming up soon (my first ever). I lied and said I had been to sick to apply, practically blind, and unable to assemble the documents necessary until now. My advocate/case worker at Network health didn't flinch, he'd been to this rodeo before. I needed more and bigger bullshit.
"Has any patient ever received retroactive coverage?"
"Well yes, but.."
"Wouldn't it be inappropriate to deny a whistle-blower like me any conceivable amenity without looping in your supervisor? I mean, maybe you should confer with the board before you decide, it's only fair..."
Check mate.

Friday, November 26, 2010

Health care for the indigent (me)


It's scary to be sick and not have access to health care.
The bills turned into demands and I wasn’t getting all that much better. I had been wearing an eye patch for a while and paying for my prescriptions with credit cards.
I couldn’t earn a living. I turned to public assistance; few state employees missed an opportunity to be cruel to me. I applied for food stamps, and was denied. My poverty buddies assured me that was just the first step toward getting them. Unregistered mail goes unopened, Take names, kick ass.
Public health insurance seemed to operate on the same principle. You don’t get it just because you qualify. We elect legislators to enact laws that create social programs administrated by employees who write their own rules.
Sometimes the dealer calls "joker's wild" and deals you a hand. You can make a wild card anything you want. I get a lot of 'em.
After a volley of applications and rejections from "Network Health" (the applications are unedited for punctuation or grammar, our answers can be rejected this way or that). I got lucky. Sent along with my rejection letter was a list of four other Ma. residents slated for same. Names, addresses, phone numbers, Social Security numbers and the reasons for their rejections. Ace's high.
Now I had something to bargain with, but as The Wicked Witch of the the West will tell ya', "these thing must be handled delicately".
The voice mail system at this health care provider did not provide an opportunity to leave a message. In order to play my card, I had to think outside the in-box. I called another local agency located in the same building and asked for the number "upstairs". I got the public health insurer's unlisted phone number; I felt good for the first time in a long while.
When I called the guy who answer refused to give his name.
"How did you even get this number?" he demanded.
"I have a lot of numbers I'm not supposed to have" I demurred.
"huh? wha'?"
I explained about the egregious breech of patient confidentiality and that I wanted to speak to someone one with enough authority to give their name. No one likes a smarty pants, but when you look like a pirate, you can become a cut-throat.
I was transferred to another guy with a name. He asked for the proof. "I haven't decided what to do with my evidence" I said. "I want to make sure my file is processed without prejudice after I blow the whistle. I need an advocate. Should my advocate come from within your office or outside"?
Nervous as a pudgy drunk after last call, he offered himself to me.

Thursday, November 25, 2010

Age defying eye roller

In February of 2006 I was two years sober and began to work at cleaning up the wreckage of my past. Specifically: dark circles, crepe-y eyelids, and crow's feet. I choose a brand represented by models dressed as sexy Nordic scientists. I wanted a treatment for my sagging skin, not make-up.
I applied my laboratory tested botanical with serenity, secure that I was finally taking responsibility for myself by fighting the visible signs of aging. I slept the sleep of the righteous.
The next morning my vision was double, like on booze. Two horizon lines: one, as level as the strings on the neck of a violin; the other a bow angling up and down across the first in a nauseating movement. I was betrayed by Sweden's sexy-ist scientists. Damn Helsinki!
My right eye was suddenly untethered in it's socket sloshing around like the last ice-cube in a melty vodka. Hoping this would go away by itself, I stumbled around like that for three days.
On my way to the emergency room I bought a pirate patch at the drugstore. It helped me to not fall, but mostly I wanted feel as though the nurses wouldn't think I was stupid. Oh well...
The first ER took a look at the pirate patch and sent me to the "Main Campus" at Charles Circle, where they suggested I go to the ER at the hospital "right next door". Three ER's in ten hours, and I hadn't been triaged. Finally a neuro ophthalmologist suggested I might have nerve palsy, and no one should touch me 'cause I probably had high blood pressure and should be sent back up Fruit St. to MGH. They sent for a wheelchair, but after fourty-five minuets I decided to walk up. On TV they always put pressure cuffs on people in emergency rooms, why not in real life?
After ignoring the nurse's admonishment that I should wait for a wheelchair, I walked up the hill. Thinking that maybe I had nerve palsy (they say it does just go away) and high blood pressure. Well of course I'd have high blood pressure; I'd been bamboozled by bimbos dressed as scientists and then turned away by nurses dressed as bimbos.
Now I returned to the ER a few hours later and this time there was screaming. A team of EMT's and Firefighters were bringing in some dead burnt kids from a car wreck. The last thing I remember thinking was that the fireman looked like he was in shock. Then the smell, the boy, and I was in shock.
I made it home. I guess I fled.
The next morning I went back to the emergency room where I had started. The day before I hadn't gotten anyone's name or business card. To this day I haven't made that mistake again. I asked the receptionist for her card before I would answer any questions. I was holding up the line. I would not step aside. She lost her English.
The nurse who had originally sent me away the day before came out from behind the Plexiglas to "handle this". I didn't look very good, so she said. Her attitude suddenly got all professional and fast acting. I was guided into the exam bay. A younger gansta' style nurse got into an argument with a clerk (or gangsta's assistant) over who got to ask me the questions. Typically, I find a pissing contest good sport and love to play or wager, but not this day.
I pulled out my phone. The bickering stopped.
"What are you doing?"
"Calling myself a fucking ambulance"
"Wait, wait, wait! Don't do that"
"I need to a Doctor right now, no more questions" and I launched into the whole story.
I was interrupted, told to be quiet. I told the story anyway, loud enough for everyone to hear, as I was ushered into the company of a small frightened Doctor.
My blood pressure was dangerously high, it had crushed the nerves around my eye. I was admitted into the Emergency room to be given intravenous drugs to get my pressure down to a safer level. Palsy does just go away if your blood pressure goes down. The bills do not. Plus the meds were expensive. I was going to need free health care.


Wednesday, November 24, 2010

Why Blog?

A few years ago I got sick and poor. And had a fabulous time doing it. This is my story.