Tardive Dyskinesia Update and Good News

As it turned out, my Tardive Dyskinesia was getting worse and worse, bad enough so that people were noticing.  My tongue was making my jaw move to the point that people assumed that my teeth were chattering, and said, “Gee, you look very cold!” or something to that effect.  Or they gave me strange looks on the bus.  Perhaps, also, the TD was getting into my jaw, but of this I am uncertain.

Well, Dr. P and I decided finally that it was time to lower the Thorazine.  Because of insurance (jeepers!) I am only allowed the 200 mg size of Thorazine, and I can’t cut them in half, so I am taking 400/600 every other day.  It’s working out okay, but I suspect it’s too soon to really draw any definite conclusions.

However, the good news is this:  The TD has nearly stopped.  Whereas previously, it went on all day long, just about all  of the time, now it is happening rarely, and not as violently as to make my jaw move at all.  In fact, I got no TD on Saturday until around 7pm.  I phoned everyone I had on my speed dial and told them the good news!  I was so excited!  The sad part was that most people haven’t a clue of the magnitude of this event, but I couldn’t contain myself.  I was bubbling over with joy.

Here are my previous blog articles on the growing problem I was having:

http://juliemadblogger.wordpress.com/2008/10/03/tardive-dyskinesia/

http://juliemadblogger.wordpress.com/2009/06/14/thorazine-update/

Contained in these articles are links to further information on TD.  Here’s another You-Tube I found:

I will not be able to raise the Thorazine back to the previous dose of 600.  Bringing the dose back up will worsen the TD.  It so happens that this is the tendency with many patients.  So this has been a decision I have made based on the fact that I have been stable for a long time.

I have been hoping to get off Thorazine entirely.

One problem I have noticed is that I have an increased sensitivity to caffeine.  I can drink tea but a strong cup of coffee jazzes me up, and makes me uncomfortable.  This is simply something to take note of.  If I have to drop coffee altogether, I will be very sad.  But I do like tea.

BREAKFAST – a chapter I’m working on

1982
Breakfast

I look at my watch it is 7:35.  7:35 so early and damn I haven’t slept well.  Stupid cold, and Martians all night long.  Something about Irene in my head but I can’t catch it because it is floating, slipping from my fingertips, drops of mercury.  The Martians steal my thoughts and my head buzzes with emptiness.  Irene, Irene Irene.  The kitchen is pale with teasing polka-dots on the wallpaper.  Like Irene, they play all day in the sun that beams in from the windowpane.  It would be so easy to smash the sunlight.

Mother has kept her appointment.  She flutters about the kitchen.  I see colors around her, yellows mostly, that banter, and bargain, and bash.  So this is breakfast, at 7:35.

She apologizes for being late.  She sets the table for four.  One two three four.  Forks and knives and spoons.  Martian telling me to stab her with a knife.  Once, twice, three times.  She boils hot water, talking, but I can’t hear.  Makes orange slices.  Pours a bowl of cereal for her husband.  I remember Martians telling me to buy Fruit Loops in a box and even Irene cannot save me.  Eat, eat.

She pours him skim milk in a tiny pitcher for his cereal.

I drink half my pineapple juice and dream of California.

I take the vitamin C that she has dutifully placed in my spoon.  The Martians tell me it is poison, but it is too late; I have swallowed it already.  I sniffle and cough up Martians and horrible thoughts that I cannot catch.  They get sucked up into the fan that is embedded in the wall.  Julie, cover your mouth.  My stomach hurts.

Mother won’t sit down.  She is a skinny Weeble and I hate the halo she wears.  She says, “I must, I must stand, for exercise!”

Irene and I slept in a school bus last weekend just for fun.

Mother says, “You are trying to provoke me, Julie.”  She has been talking about provocation for weeks.  I have been Evil for years.

At last she sits.  Papers in a pile cover the table and I can’t see her too well because of this mountain, mountains everywhere.  Mother opens a letter around the corner, from a political candidate or a fundraising organization.

My thoughts are not my own.  They steal funds from my brain.  Grand scale embezzlement.  Call the attorneys.  Alert the media.  Get NPR in here.

Valentines sit on the lazy susan.  Mother to Dad:  “You still have what it takes to light my fire.”  Dad to Mother:  “To my better half.”  Parents to son: “There’s a word for sons like you–TERRIFIC.”

Terrific, terrific.  I can see terrific painted on the wallpaper polka dots, just above Dad’s head, shimmering like the asphalt on a hot Nevada highway.

Mother: “Julie, I bought myself a reflective vest for bicycle riding!  It is much better than the other one I’ve got because it has Velcro rather than buttons!  Velcro!  Velcro!”

Velcro in a baby bath.

“It’s supposed to snow today,” she says.  “Oh, Alan!”

Dad sits.  “Ladies, good morning.”

There is so much mail and I cannot fathom it.  He opens several letters with a letter opener I’d like to stab Mother with.  A flyer from Public Radio.  “I can’t seem to locate that program I heard on the schedule,” he says.

I can’t hear any program because the Martians scramble my thoughts in a mixing bowl with sugar, flour, and butter, and then make me eat it all until I burst.

Mother is too busy with her political junk mail to pay much heed.  I am too busy struggling with Irene.  Irene, Irene.  She is calling me from beyond the trees.

Dad wolfs down three slices of orange, a bowl of cereal and half a banana.  Mother has consumed a glass of warm water, a glass of skim milk, a soft boiled egg, three slices of orange, and the other half of Dad’s banana.  Banananananana.  She makes instant coffee for both of them.  Regular for herself.  Decaf for him.

I finish my pineapple juice because it is proper to do so.  Starting on herbal tea.   My thoughts are coughing and sneezing.  The parents ask if I still have my cold.  I decide to be honest–yes.  I have it.  I have it have it have it.

“Alan,” says Mother, “I’m too busy with the League of Women Voters to make all the meals this weekend.  The alternative is to go out to eat.  I could throw something together, I suppose, but it won’t be very elaborate.  Which would you prefer?”

Dad leaves for work.  So that was breakfast.

“Julie,” Mother says, “He’s busy with his computer programs.”

I have computer programs in my head.

She has risen, like the moon.  She has already cleared his breakfast as well as her own, and made her lunch for the day.

“I have already cleared his breakfast as well as my own, and made my lunch for the day,” she says.  Her words are like the letter “O.”  They roll and bounce, like round bubbles in the center of the kitchen.  I try to pop one, but it gets away from me.  Irene and I are happy when she leaves the room, even though Irene isn’t here.

I miss Irene even though I don’t miss her.  I have three-quarters of my tea left.  I think I will pour it into my stuffed-up nose.

Bus story

I saw a man on the bus who I believed was in trouble.  He wasn’t your average passenger sleeping on the bus.  This guy was trying to stay awake and couldn’t.  He was more tired than I ever have been with my all-nighters.  He was trying to solve a crossword puzzle but couldn’t get beyond the first letter without falling asleep, his head in his lap, pencil falling to his feet.  He attempted to sip some Pepsi but fell asleep doing that, too, nearly spilling his drink onto his lap.  At one point he fell asleep leaning well into the aisle of the bus, and nearly fell.

He was a Harvard student, a kid, really.  He wore a Harvard hat, a Harvard sweatshirt, carried a Harvard Bookstore bag filled with books, pens, and stuff Harvard kids would carry.

I asked myself: Who is this man?  He obviously hadn’t showered or shaved for several days.  At what stop was he planning to get off?  Was someone picking him up?  If he had to walk to his destination, would he be safe in traffic?  Did he in fact have a destination?

Then I asked myself:  Should I ask this kid if he needs help?  Should I offer to call an ambulance, if he needs one?  Should I alert the bus driver?  First of all, I told myself, I am not a doctor, nurse, or social worker, and so I am not qualified to determine whether this kid needs an ambulance or not.  Secondly, my cell phone is broken.

I left the bus and came home.

Several hours later, I realized something.  Would I have cared so much about the kid if he hadn’t been a Harvard student?  Did the combination of his condition and his social status seem incongruous to me?  Did it seem so unlikely that I felt I had to act on it?

Bus

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BUS

When I was eight years old, my mother decided one day that she was too busy to pick me up after my piano lessons; I would have to take the bus home. I had never been on a bus before, not even a school bus, let alone ridden one without the supervision of an adult. I was a very small child who wouldn’t easily be noticed, so my mother instructed me to wave a red handkerchief at the bus when it approached, to get the bus driver’s attention. That I know of even now, this isn’t a standard technique, but it sure beats jumping in front of the bus.

I admit I was scared. Very scared. The rush hour traffic on Mass Ave whizzed by so fast that I might as well have been on a major highway. Now and then when a car passed it splashed in a puddle and I was drenched with cold, salty water. I lost my mitten twice, the second time permanently. Snots dripped down toward my upper lip. I snorted them back up but they rolled back down the groove below my nostrils. It didn’t matter. I wiped my face with my sleeve; everything was wet, anyway. I began to cry. Finally, I saw the bus.

As it approached it seemed like a great animal, an elephant, maybe; it had a face. Or a clown. It smiled at me, or, rather, sneered. Looking carefully, I noticed the rubber part of one of the windshield wipers, in desperate effort to wipe sleet and salt from the giant windshield, had torn away from the metal part and was dangling like a man hanging from the gallows, swinging this way and that, and I held my handkerchief, my mother’s red handkerchief that was now hopelessly stained, and I waited for the bus to stop.

It didn’t.

I trudged back to my piano teacher’s house. I had failed. I had failed and Mom would yell at me and call me bad. It would take hours to walk home and as a small child I didn’t have the stamina. My only hope was that I could bum a ride home, or partway home, from another piano student’s parent. Other kids’ parents were so nice, it seemed. I was always amazed that Karen M could talk to her mother like she was her friend–well, like you and I are talking now. I didn’t think mothers were supposed to be approachable and kind. But Karen M wasn’t around to rescue me now.

My piano teacher got my mother on the phone and explained the situation. “You didn’t wave it hard enough,” my mother said to me. The crackle in her voice wasn’t from the phone connection. “You need to wave it high.” As she said the word “high,” her voice became squeaky and animated. The next bus was coming in an hour and I had to repeat the same routine over again.

I repeated the same routine over again with the same results.

“I’ve called the MBTA,” my mother said, “and complained. Oh, I gave them a piece of my mind. Passing by a little girl like that. A little girl in the cold. A little girl who could have been hit by a car. A little girl who shouldn’t have had to stand there twice because some stupid, incompetent bus driver wouldn’t pick her up! Who do they think I am, some irresponsible parent? No, I gave my little girl explicit instructions, and the hanky, the hanky–you didn’t get it stained, did you?”

Nowadays I consider myself a competent rider of the MBTA system. Armed with my TAP card (for persons with disabilities) I can go anywhere I want relatively cheaply. Last night I came home rather late on the #73 bus, which was crowded and rather unpleasant-smelling; a combination of booze-breath and garlic nauseated me. As the bus rumbled closer and closer to Waverley Square, the crowd thinned out, and I saw a tiny girl with pigtails, about eight years old, snuggled in a seat, holding her toys, apparently asleep, no parent in sight. I glanced around, incredulous. This little girl was riding alone?

At Waverley, she woke with a start. I could feel her panic as she swung around.

“Mommy–”

The girl’s face eased into a smile.

I AM SPECIAL

 

9/27/2006

 

 

I AM SPECIAL

 

 

I happened to see Carol K on the #71 bus the other day.  She didn’t recognize me because I had gained so much weight.  Of course, it had been years.

 

 

While Carol K cajoled with two other women, I had the opportunity to take a good look at her, and yes, it was indeed Carol K, retired dance instructor at never-mind-which college in Boston.  She and I had been students together in a memoir writing class.

 

 

Now and then, Carol K glanced worriedly at me.  Like she couldn’t place who I was.  Like I was someone out of her past she didn’t want to see.  Like a touch of paranoia had gripped her.

 

 

Carol K and I both disembarked at the last stop.  I was headed for my shrink appointment.  Lord knows where she went, but after my appointment was over, I took the #71 bus again and there was Carol K.

 

 

Carol K sat in one of the sideways-facing seats near the front.  I sat just behind the side door, behind a plexiglas wall, sipping on a large bottle of water.  Carol K was alone now, stealing glances at me, her eyebrows slanted, her eyes little slits.  I was getting a kick out of this.

 

 

We got off at the same stop.

 

 

Carol K hastened ahead of me.  My plan was to relieve myself at the library rest room before continuing on home.  My bladder felt as though it would burst.  But the obsession had gripped me: Where was Carol K headed?

 

 

What mattered most was that this meant something, something especially for me.

 

 

I kept a safe distance behind.  Carol K quickened her pace.  Then she turned, and stepped into the library.

 

 

Enough was enough.  I walked past Carol K, past the library, past the rest room, shaking off all her paranoia, all my own paranoia.  My bladder would have to wait.

 


 

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Today’s Rant

 

Lately, I’ve felt that I have no right to be on the planet, that there is no place where I belong.  For example, the bus:  Even though I was a paying customer I only paid a quarter because I have a disability card.  As I stumbled up the stairs, the driver sighed impatiently, saying, “Move on.”  The woman next to me shoved over as I sat down, as if I hadn’t bathed or had grown horns.

 

 

Then I stopped at the pet store, which always seems to have more employees present than customers.  Why they weren’t happy to get some business is beyond me.  I purchased a doggie retrieving toy shaped like a ring, and junk food treats for QB.  As I pulled out my wallet, the worker angrily took the cash from me–yes, it was a $20 bill, but it was money, right?  I have no right to be here, I thought.  They don’t want me here.

 

 

I boarded the bus again and got off at McDonald’s.  I was thirsty.  But I couldn’t find the entrance, only the drive-thru lane.   I circled the building and found my way inside after maneuvering my briefcase over curbs and stairs.  Families with kids scuttled around the place like bees.

 

 

I approached the counter.  “What do you have to drink?” I asked.  I noticed that the workers were all female, and the supervisor male.  The worker looked at me incredulously as if I should know what they have to drink.  I repeated my question.  “Medium?” she asked.

 

 

I replied, “Yes, medium.”

 

 

I haven’t been inside a McDonald’s in years.  I paid for my cup, thinking, I am a paying customer; I have the right to be here. I poured myself a Diet Coke as McDonald’s is now self-serve for beverages, and sat down.  I finished the entire cup in just a minute or two.  Still thirsty, I refilled my cup and drank greedily, wondering if I was entitled to that second cup.

 

 

Then I ambled over to the ladies’ room, and found an empty stall.  The seat was cold as if it didn’t want me sitting there.  There was no soap in the dispensers.  I felt unwanted and unwelcome.

 

 

The question is, what am I?  I am a dog owner, a pedestrian using public transportation, a human experiencing the very natural feeling of thirst; all these are true.  But do I have the right to use these services?  Do I have the right to be on this planet, even?  What right do I have to take up space that someone else could put to better use?  Is there any place where I belong?  I am a dog owner, but does that make me a member of the larger sphere of dog owners, or am I an outsider?

 

 

An outsider, yes, that’s how I feel.  I’ve taken a few writing classes recently in which I feel I have no place because I’m not a “committed” writer; I am fickle and unreliable.  I left graduate school because I felt I had no place there, slid out of the genre of fiction and took up creative nonfiction….I can’t even say I’m a student anymore.  I joined a weight loss team and now I feel like I’m competing against, instead of with, my teammates.  Like I have no right to go to the gym because I’m too fat, and no right to be on the team because I don’t work out enough.  This has been stewing in my brain for some time.  I don’t belong; I’m not good enough; I can’t meet expectations.

 

 

Today is the kind of day that eases in and out of sunlight and cloudy skies.  I have brought my parasol with me, because the Thorazine I take makes my skin burn.  What right do I have to prance around with that huge purple parasol?  Do I make people’s eyes sore?

 

 

The library is a block from McDonald’s.  I turned into the side street, then into the rear entrance to the library.  The door would only open partially, but a kind woman explained that the door was automatic; I had to press a button to get it to open.  I pressed it.  The door opened.

 

 

The library was cool, quiet, and inviting.  I found a seat in the back of the reference section: my seat, plopped my parasol on the top shelf of the desk, put on my reading glasses and plugged in my laptop.  Then, I began to write furiously, and the whole world whirled around in that exact moment, and tapped me on my shoulder.

 

 

I think it’s still tapping.