Saturday, June 25, 2011

Pretty nurse is selling poppies from a tray

It seems that I have just fallen asleep when I am jolted awake by the sound of somebody screaming. Not screaming, exactly. More like howling. It rises and falls, “OHHHHHHHhhhhhhhhhh—” Over and over again.

Then I remember where I am. ER. Of course. Only this time, it’s me in the bed.

The room is dark. My eyes close again and when I open them, the nurse has materialized by my bedside, ghostly still and insubstantial in the bit of light from the hall.

“Was someone screaming?” I ask.

“You heard someone screaming?” Her voice is noncommittal.

I thought I did. Did I? “My head hurts.”

She nods and starts to inject more medication into my IV drip. “Was someone screaming?” I persist. “Are they all right?”

“This will make you feel better,” she says, carefully avoiding the question. Maybe I’m just paranoid—or maybe she’s just abiding by HIPAA laws. The drugs go in and that’s that, as neat and efficient as being submerged in a pool of deep, black water.

I rise again for a minute because again I think I hear someone screaming. Maybe I am imagining things.

Then for a minute, by my bedside, I see, very clearly, a roll-around cart like you’d see in a fancy hotel, with a tray. On it is a bottle of strawberry pop like my father used to sell in his convenience store when I was a kid. There’s a glass of it already poured for me, with ice. Beads of condensation dot the glass invitingly. Strawberry fields forever.

I lick my lips and try to reach for it, but there’s a blood pressure cuff affixed to my right arm. It’s set to go off at regular intervals. I’m not sure how often. Sometimes it wakes me up, sometimes it doesn’t. But the cart and sweet soda are not there.

---

I apologize for the delay in posting an update on this blog. It appears there has been a nervous breakdown in the works for some time, but hopefully that has been mostly diverted. In particular, I have been wanting to write a follow-up to my post about medicinal marijuana—the response to that has been simply overwhelming. And frankly, I could use a hit—medicinal or otherwise.

A friend shared an interesting story with me after reading my post that I would like to pass along. Now bear in mind, this information is second-hand. I can’t verify that any of this is true, or provide any further details.

The person who told me this story said he was buying pot (for recreational use, if you care to know) from a woman who lived Downtown. The woman had cerebral palsy. She was on disability and Medicaid, which, as I have mentioned in previous posts, does not cover prescriptions. She lived in subsidized housing, had no car, and was barely able to scrape a living. So she began selling pot to try to supplement her income.

Now, I am speculating at this point. Pot is not the cash crop some people may think it is. With the cartels fighting in Mexico, supply is not reliable. Trafficking across state lines has become more risky than ever. Clients are not reliable; pot is a relatively cheap, non-addictive substance which does not guarantee repeat business. So the woman turned to selling meth. Meth has the benefit of addiction—the clients are much more likely to come back. It’s a terrible way to think about things, but you cannot deny the logic. Also, it’s much more profitable, so you don’t have to sell as much of it. And it’s made here in the good old U. S. of A, so there’s always a steady supply.
The woman got busted. My friend is out his dealer. But on the plus side, the penal system is now responsible for her 100% of her medical care, prescriptions included.

---

I bring up this story because the story I have been slowly starting to share with you is the story of health, medicine, care giving, and all that goes with it: its effect on the psyche, its effect on a marriage, and its effect on life in general. But there’s a big issue that I’ve been shying away from.

Money.

It’s that thing we’re all taught not to talk about. But this is America. In God we trust, all others pay cash. We follow ads like children after the pied piper, and have been taught from the cradle that covetousness is a virtue. We like to tell ourselves that there’s such a thing as upward mobility but it’s hard—speaking as a kid who grew up with one foot in the barrio, and married to a man from a trailer park, I tell you, it’s damn hard. Feudalism never went away—we’re all just peasants with better houses. If you started life a peasant, chances are, that’s how you’ll stay. And in this economy, it’s even harder.

So, without being too impolite – which is to say, without numbering numbers – let’s talk money.
These are what my worst nightmares look like now: I open a bill from KCPL. It’s for $300. I panic. I don’t have $300. How is that possible? We are so careful about using electricity. I don’t understand.
I awaken with my heart racing.

In the winter, I dream multiple times about the heating system going out. I dream about car transmissions failing. Of tires being slashed or going flat. I dream about trees falling on the roof. About the wiring shorting out. Every morning when I wake up, I look out the front window, terrified that one or both of our cars won’t be there—that the repo men will have come in the night. Every time it rains, I pray that our basement doesn’t flood. Again. All of these fears have replaced the monsters of my childhood. Not just because I don’t have the money to handle them, but because I don’t have the fucking stamina to deal with another emergency. Not again.

---

Three years ago, Patrick and I thought we had achieved the middle-class dream. We both had good, steady jobs that held the possibility of promotions. After plugging away off-and-on, part-time, for years, we had both finally gotten our associate’s degrees from MCC. Patrick decided to sit out while I went on to Rockhurst to finish my bachelor’s. We bought our house—got in just under the wire before the mortgage crisis, which has proved to be something of a mixed blessing. All things considered, our debt was minimal. One credit card. Some student loans, but not much. Two car loans. But we were DINKS – double-income, no kids. Patrick was working for a cell phone company, so our phones were free and our monthly bill was only $20 a month. We did not have to pay for health insurance-- he was enrolled as a single adult through his job, and I was enrolled as a single adult at mine. His job awarded quarterly bonuses. Since I was a single adult, I had the additional benefit of using a flex spending account for healthcare costs, which meant I could save receipts and recoup costs for prescriptions, co-pays, and even over-the-counter medications for up to several hundred dollars a year.

Were we rich? By no means. But we were okay. And above all, we were doing everything we thought we were supposed to be doing.

We had no way of knowing that less than six months later he would be diagnosed with the autoimmune disorder that would result in total renal failure.

I know, I know. It’s not like catastrophe can’t come at any time. But come it did.

---

Really, I keep telling myself, as I have watched friends and colleagues get laid off, struggling to find work, to support themselves and their families, that we’re all in the same boat here. The best we can do is form a network to lend each other a helping hand, money, whatever we can, whenever we can.
I think of my great-great-grandmother, who came up from Mexico in 1918, after a typhus outbreak wiped out most of the village of Zamora, as well as most of her family, including her husband and six of her seven sons. She worked her way up to Kansas City with her elderly mother and my great-grandfather, who was eight years old, in tow. When she settled on the West Side, she read Tarot cards and sold bootleg to earn a living—bathtub gin, homebrewed beer, and wine made from grapes that, as far as I know, still grow on the vine in the back yard at the house on 21st and Holly. This was during Prohibition. Not so very different from selling pot, is it? A number of those houses in that old neighborhood have secret rooms in them, which I imagine were used as either speakeasies or storage areas for booze during that era.

Seems so quaint now. We admire that sort of enterprising spirit in the face of adversity, the sheer will. To beat the odds, no matter what. To always find a way, even if it means breaking the rules. The sheer guts.

I can’t think of anything more American than that.

---

Five months after Patrick was diagnosed, he was effectively unable to work. The medical bills had started to mount. After he used up his paid time off, he qualified for short-term disability, which meant he got 60% of his pay. I tapped out my paid leave quickly.

On some level, I was always aware, but it’s not until it actually happened that I really found out how little it takes to upset the whole financial apple cart. In addition to reduced paychecks, there was all the money I spent eating in the hospital cafeteria or fast food because I wasn’t at home. Frequent trips to the emergency room-- $100 a pop. Medications—at first, he was taking so many, and they were being changed frequently to accommodate his changing condition. We’d start one drug, then have to throw it away because it didn’t work, or the side effects were so bad, we’d have to switch to something else. His diet had to change, so we’d have to buy new foods—at one point, the low-sodium, low-potassium diet necessitated a complete overhaul of the pantry. He had steroid-induced diabetes, which meant purchasing a glucose monitor, needles, insulin. More money.

After Patrick officially went on disability, our income was cut in half, and our expenses doubled. He had to go onto my insurance, which means we had to start paying for insurance, which meant a big chunk was suddenly gone from my paychecks. We had to start paying for cell phones, for cell phone service. The quarterly bonuses were gone, the flex spending account, gone.

In no time, we’d racked up five credit cards. I started missing payments on things. Bouncing checks. And you know where it goes from there. Late fees. Overdraft fees. Creditors sending letters. Calling, calling, calling. You wouldn’t think such a thing would be so stressful, but it is. It’s designed to be. I’ve borrowed money from my parents that I don’t know that I’ll ever be able to pay back. The threat of foreclosure and bankruptcy looms large. I feel like Sherman McCoy in Bonfire of the Vanities, hemorrhaging money. I have begged, borrowed, and I haven’t stolen yet, but I would if I thought I’d make a halfway decent criminal. Or maybe I would. I'm the descendant of a successful bootlegger.
As if the medical problems weren’t enough, there’s all the other life stuff—because there always is and always will be. We discovered black mold in our bathroom, which had been exacerbating my asthma since we moved in. This necessitated ripping out the bathroom and redoing the whole damn thing, which, theoretically, should’ve been a weekend project but wound up dragging on for months and still, technically, hasn’t been completed. Plumbing problems in both the bathroom and the kitchen. Our car tires got slashed twice and we’ve had two blow-outs. The Dodge needed new brakes and had some other problems. The basement flooded two years in a row—last year, catastrophically, when the sewer lines in this area backed up, leaving us with a foot of standing sewer water in the basement, taking out our hot water heater, and washer and dryer, along with a lot of other stuff we had stored down there. Plus—gross.

Any one of those things by themselves could range from an annoyance to a major headache. On top of Patrick’s health problems, they become enormous obstacles. Then factor in my going to school, never less than nine hours a semester, up until this past year, which I took off in order to get a second job . . . and I’m really not sure how it is that I haven’t been hospitalized before now.

Patrick found a great article on cracked.com the other day, 5 Things Nobody Tells You about Being Poor. My favorite part was, #1. You are always in survival mode. I thought this really summed the up the experience.

---

I’ve been trying to evaluate when the perilous loss on my grip may have started. I leaf through my journals and find, as early as March 2009, outbursts of hysteria I have managed to forget: I cry all the time. I don’t sleep. I am finding, to my amazement, that I function very well on little to no sleep. Even though I want to kill someone, I have become very kind, sociable even. Last week, I wanted to kill myself. For the first time in my life, I really, actively, seriously considered doing it—cutting my wrists in the bath, like a Roman, purpling the water with my blood. I feel life has finally defeated me. Pitched me a curve that I just can’t hit. If I believed in the Devil, I would be prepared to give him my soul on the spot if he would make Patrick well again. I can bear anything but that. I know how cowardly it is to want to kill myself over that, but oddly, that doesn’t bother me. I want to put down the burden, too. My reasons are entirely selfish and self-indulgent. So why didn’t I? Coward. Again, the odd thing is how nice this has made me. All my co-workers have suddenly become very friendly and sweet. I talked to Coyote about this. He said it’s because now I’m dead inside, like they are. I said that I’m not dead. Just sleeping. Maybe that’s the reason I don’t kill myself. The prospect that this is a long nightmare I will wake up from.

I sat on the bathroom floor sobbing until 2 a.m., sobbing into a towel so Patrick wouldn’t hear . . . I don’t recognize myself. I’m frightened by what I see. But I don’t know how to get help. And anyway, how can I tell someone that all I think of is death, and that rage and depression are eating me up, and the sense of dread that I will never accomplish anything, and I just want to be free of it all?

---

So last fall I got a second job—a temp job was all I could find, doing data entry and filing at night. It was available only through December. But it kept us afloat for a while. I also took some freelance editing and translating jobs.

---

I’ve had migraines since I was seven years old. They were pretty bad throughout high school. Then there was a point when I was eighteen and nineteen when things got so bad I couldn’t work or go to school. I would spend days in bed, unable to stand light, sound, or even smells. I would vomit. Patrick would have to take me to the ER, where they would dope me up with Demerol and morphine. It didn’t stop the migraines, but it would knock me out, so at least I wouldn’t care about the pain anymore. Finally, I went to the Headache & Pain Center in Overland Park, where I was put on some preventatives that finally got the attacks under control. Over the years, I have continued switching up my preventatives periodically to keep the migraines in check, but it’s been no picnic.

Everything about my migraines has been atypical: the fact that they started so young, the frequency and severity of them, neither of my parents had them, and all of the weird sensory disturbances I experience.

Within the past year, I’ve started having full-blown hallucinations. Once, when I was leaving the office, I walked past my co-worker’s desk and I saw a tiny person scamper across it. But when I stopped and looked again, I realized that it was just a photo box he has on his desk with pictures of his grandchildren. Another, more disturbing instance occurred when I was out for a walk at night and I swear I saw a grotesque, elongated, flesh-colored creature clamber across my neighbor’s roof. Shadows move, shapes shift. When I close my eyes, I see brilliant flashes of color behind my lids—fields of blue and yellow and orange. Once, when I closed my eyes, I saw a swimming pool with three dead bodies floating, naked, face-down. Then I closed them again and I saw three dead bodies floating face-up in a pond filled with algae. It’s scary and disorienting. I get strange scents and tastes, from the infernal to the sublime—rotten meat, burning hair, pepper, lavender, mint. Up to twenty-four hours before a migraine hits, I experience euphoria, bursts of energy, a sense that the world’s colors are sharper and brighter. Food tastes better. I see auras and floaters and tracers. The texture of my dreams changes—I can’t explain it better than that, other than to say it’s like watching some new quality and definition of film.

Then, the aftermath of a migraine leaves me wrung-out, hungover, and the color is gone from the world, like a washed-out watercolor. I am left a burnt fuse. When I get in the shower, my skin is unbearably sensitive. The droplets of water feel like needles. Food and drink burns my mouth.
Lewis Carroll was said to have suffered migraines, as did van Gogh. I can understand, only too well, the strangeness of their visions. I don’t know if William Blake had migraines, but he saw strange visions as well—he saw God. He saw angels and prophets in trees. How do you know what’s real and what’s not?

You know how Eskimos are said to have many words for snow? I am like that with migraines. I have many phrases to describe what it feels like: the end of the world in my head. My brain trying to eat itself. The blood vessel rebellion. My head is a dry socket. It’s like Jacob wrestling the angel. The migraine beast. Being locked in a room with a beast. Alone. No one can save you.

As a lifelong migraine sufferer, I’ve had a recent CT scan, which was negative—so no strokes, no neurological problems that I’m aware of. I have regular tests done and, so far, they’ve all come back normal.

---

Another point where I felt my grip slip a little more happened on March 9. Ash Wednesday.
I’d gone to mass at Our Lady of Perpetual Help over my lunch hour at Redemptorist Parish. My mother and uncles attended Catholic school there. My uncles served as altar boys. I attended school there as well; made my First Communion.

That day, the priest pressed the ashes very heavy and dark into my forehead, intoning, “From dust thou art, to dust returnest.”

When I came back to the office, one of my co-workers and very good friends, Chris, collapsed at the office and was taken to the hospital by ambulance. I shared an office with her. I had just spoken with her and she seemed fine. I excused myself to go heat up my lunch to eat at my desk when someone came rushing into the break room a few minutes later to say they’d found Chris in the lobby, on the floor. She’d apparently gone out there to make a phone call from her cell, trying to get better reception. She’d started feeling sick and was trying to call her doctor.

I ran out in time to see the paramedics loading her onto a stretcher. She was awake at least. She grasped my hand before they took her away.

Someone thrust her cell phone into my hands and asked me to call her husband since I’d known them the longest.

So I did. My hands were shaking so hard I could barely dial the number. I don’t know what happened. I just fell apart. You’d think after all my experience with hospitals and illness that I would have been calm. But I just wasn’t. When her husband answered, I managed to stammer out that Chris had been taken to the hospital and that maybe it was a heart attack. He was calmer than I was.

My mind was blank for the rest of the afternoon, except for the phrase, “From dust thou art, to dust returnest,” running over and over again in my head, a song stuck on repeat.

As I walked slowly back to my desk, one of my other co-workers, a guy who was actually trained as a nurse and served as a medic in the first Gulf War, came up to talk to me. Fortunately, he was one of the people who had gotten to Chris first. Unfortunately, he chose that moment to come share his war stories with me. The wounds he treated. Burning oil rigs. I don’t know what-all because, suddenly, I just couldn’t hear it.

All my life, I have been one of those people that other people choose to unburden themselves to. If I were a man, I would have made a good priest, a good confessor. I’m an excellent listener. I am not judgmental. I have had perfect strangers confide in me, even cry on my shoulder, and for the most part, I’m fine with that.

But that day—I just couldn’t do it. I looked him in the eye, and nodded when it seemed appropriate, but it was like my head was under water. No sound penetrated my ears. Or like on the old Peanuts cartoons, whenever an adult spoke, all you heard was, “Waaa waaa waaaa waaa.” That was all I heard from him. I simply could not take in any more information.

I had reached critical mass.

---

That weekend, the migraine hit with a force like a supernova.

It was so bad that I thought Patrick was going to have to take me to the ER. I was out of commission for three full days. I stayed in bed except when I crawled to the bathroom to throw up. Nothing in my pharmacological arsenal could touch it. The migraine beast had me in its jaws and refused to let go.

---

After that, the days blurred together. I don’t think that the migraine ever went away fully until sometime in May. I had occasional respites in which the pain abated, but there was always a dull, background ache. A scary twitching had started in a large vein on the left side of my head.
In April, my doctor doubled all my dosages—my preventatives, my painkillers, but to no avail.
In May, he made the decision to switch me from a beta-blocker to an anti-seizure drug, which I had never taken before. The new drug would have major side effects. The drug is so potent, you have to work up to a full dosage slowly. It would take a full month for me to get there.

Over the course of that month, I fought through the side effects. Vomiting, diarrhea, memory loss, clumsiness, slowness. Poor concentration. No appetite. I’ve lost 14 pounds—not that I can’t afford to lose the weight, but still, it’s unsettling to see it come off so quickly. Tingling in my hands and feet. Painful pins and needles, especially in my feet, which can last for up to five minutes. I get this weird sensation like ice water trickling down the backs of my legs. My eyes burn and are frequently bloodshot. My eyes twitch—not the eyelids, but the eyeballs themselves, which I think I hate most of all. No, scratch that—what I hate most of all is the damn fatigue. I’m used to being able to stay up all night if I have to in order to study and get things done. This medication makes it impossible. The first night I needed to stay up and do homework, I was out by 11:45. I’m used to being able to pull all-nighters. Night time is my time. I don’t want that taken away.

But. No migraines. It’s kind of hard to argue with results.

---

So once I got up to the full dosage of the new medication, it was time to wean off the old stuff. The doctor warned me to take it easy—it could cause passing out. But I weaned down, a quarter of a dose at a time, until I was down to half a pill a day. I thought I was in the home stretch.

Then, two weeks ago, I started to stand up from my chair at the office and almost keeled over. Alarmed, my co-workers sent me home early.

That Sunday, it happened again. Patrick and I had dinner with my parents. On the drive home, I was overcome with dizziness. Fortunately, I was not driving. But as soon as we got home, I had to go inside and immediately lie down. It lasted for hours, dizziness accompanied by the most unaccountable sensation of euphoria. Waves of pleasure passed through my body making my muscles contract, explosions of color erupted in my skull like fireworks. It felt good, but it was also strange in that I felt like, at any moment, I might wink out of existence. And I was fine with that.

---

On the 15th, Wednesday evening, after class, I hung around, talking to my professor and two of my friends. I thought I was all right. I was feeling so good, in fact, that I was considering going to a student writing group that meets every Wednesday night. But as we stood in the hallway talking, the dizziness slammed into me again. I had just enough time to grab my friend’s arm to keep myself from falling.

The three of them herded me into the professor’s office, where there was a couch. I lay down for a while and tried sipping some water. They offered to call an ambulance or take me to the hospital. Ultimately, I declined both, even though I was shaking. My professor was good enough to drive me home.

Needless to say, I did not go to work the next day, but saw my doctor. We had to rule out withdrawals from the old medications first, so he put me back on it, but he told me that he thought it was more likely that I was experiencing anxiety attacks. Did I have a lot of stress in my life?

Sure. Who doesn’t.

At first, I refused to believe it—didn’t want to believe it. It’s funny. I can accept and understand and sympathize when others have panic attacks or other psychological issues. But I couldn’t accept it in myself. I know it’s irrational, but it feels like failure; like I can’t handle my shit. So at first, I couldn’t even entertain the possibility. But then, over the weekend, I caught myself: whenever I thought about work or school or finances, I started to feel dizzy and sick, and it became harder and harder to deny.
So Monday morning, I picked up the phone and called my doctor. “You’re right,” I said. “Let’s try some anti-anxiety medication.” He called the prescription in and I picked it up that evening. It was Celexa, a relatively mild, low-dose, anti-anxiety medication.

---

The next day, Tuesday, when I awoke, I was horribly nauseous and had little appetite, but I attributed that to the pressures of all the projects I had going on at work. Wednesday was worse. Not only did I have little appetite, but I had little thirst, which should’ve raised a red flag. But I was so busy I didn’t give it much thought.

Thursday morning, when I awoke, my appetite and thirst were just gone. It was as if someone had flipped a switch. I didn’t even want water. I became violently sick. So we called my doctor’s office. But as we waited and waited for them to call back, I got worse. I started to twitch and shake.

Patrick said, “That’s it. We’re going to the ER.”

He bundled me up and got me into the car. My hands were shaking so badly, he had to fasten the seat belt for me. And then when we got to St. Joseph, I could barely hold the pen to sign in at the registration desk. All I could think was, please, God, don’t let me be admitted. I can’t afford to be admitted for too long. I have to work. I have to make money. We can’t go bankrupt. Not now. Not over panic attacks.

I had never been to St. Joseph’s ER before. The room is decorated in cool blues and golds. Fittingly, there’s a statue of the Virgin Mary. Only the week before, I had dreamt of a blue and gold Catholic chapel.

As we sat in the waiting room, I put my head on Patrick’s shoulder as tremor after tremor passed through me—to a passerby, I must have looked like I was cold. But I wasn’t cold. I just couldn’t control the rattling of my limbs, like bare window pane in a high wind.

---

They get me in an ER room quickly. Patrick helps me change into a hospital gown. The nurse comes in to check me over. She says she’s going to start an IV line.

“Oh no,” I groan, immediately anticipating that it’s going to take multiple nurses and multiple sticks before they get the IV line started. I’m dehydrated and I have small veins. They’re probably going to have to wrap my arms with hot towels. I’m already imagining bruised inner elbows, bruised hands, maybe some blown veins.

“You just hold my hand like we’re on a date,” she says soothingly.

Despite myself, I smile a little. “You like brunettes?”

“Sure, if you like redheads.” She inspects the back of my left hand for a minute, has me flex the hand.

“What are you talking about? You have great veins. I found one already.” She prepares the needle.

“Here it comes, a little stick.”

I don’t feel a thing. Usually, the back of the hand is the worst. “Wow, you’re talented.”

“Thank you. Now we need to do labs.” She has me rest my hand on her thigh. “Second date!” she says.

“Second date, I get to second base,” I say. “Get to feel you up.” She laughs.

“You shameless flirt,” Patrick says.

There is no pain whatsoever as she fills vial after vial for the lab techs. “God bless you, you are good,” I marvel. I mean it—capable nurses are God’s own angels.

Meanwhile, I’m developing a headache because I haven’t taken any of my migraine medications that day. The nurse picks up on this, and turns the light out as she leaves.

The doctor, when he comes in, is terrifyingly young, with spiked blond, surfer-boy hair. But when he leans down to check my pupils, I see that his eyes are intent and serious. He confirms that I am having a bad reaction to the Celexa and orders to me to cease taking it immediately. No driving for a few days, no work, light meals. He says it will take the Celexa 3-5 days to cycle out of my system.
As for the rest—I am, indeed, dehydrated, and the shaking is from anxiety. So he orders fluids, as well as a lovely cocktail: Atavan to calm me down, Zofran for the nausea, and some kind of opioid—Fentanyl, I think. The nurse brings the bags and vials and loads me up.

She shuts the light back off. I’ve got my mood light. All I need is a little Zen music and I’d be set.

---

The ER doc released me yesterday, though he gave me the option of staying in the hospital. Today, I was still nauseous and shaky. Still no appetite, still having dizzy spells. I have lost three more pounds this week, which means that in a little over a month, I have lost 17 pounds altogether.

I followed up with my regular doctor this afternoon. Such a severe reaction to Celexa means that I probably won’t be able to take any anti-anxiety or anti-depressant drugs—Prozac, Zoloft, they’re all in the same family and carry the same risk of side effects. Rather than inhibit serotonin in me, it seems I am one of those rare people for whom these drugs stimulate serotonin levels, which only makes my symptoms worse.

But no medication is fine with me. I proposed therapy as an alternative. The good Dr. Charochak, who I have already mentioned is a proponent for as little medication as possible, perked right up at the suggestion. He happily printed off a list of therapists, as well as a prescription for Xanax. He said it would help with the shakes and the passing out. I took two pills after lunch and didn’t feel a goddamn thing. I did stop shaking though, so I suppose that’s something.

---

I think of the person screaming in the ER. It’s as likely a place as any for someone to be screaming. And I think of my great-great-grandmother coming up from Mexico, and how hard she worked to get here. I’ve seen photos of her, and she looked like one hard-nosed broad, but surely sometime she must have cried?

On the other hand, there was my great-grandfather on my father’s side, who threw himself off a building in the stock market crash in ’29. If anything can break a person, it’s the prospect of complete, total and utter financial ruin.

I feel these histories swirling around me. I don’t know how much a single body should be expected to take in one lifetime, or what strength or weakness is anymore. I just know that I’m tired. And next time I get a chance, I’m picking up a case of strawberry soda to wash down my Xanax.

Thursday, June 9, 2011

“What do we say to the god of death? Not today.”

I’m not usually a fan of fantasy, and I’m definitely not a fan of the swords-n-lords kind of fantasy. But I am enjoying Game of Thrones, both the new HBO show and the Song of Ice and Fire series it’s based on (I’m up to the fourth book, A Feast for Crows). I especially adore the character Syrio Forel, who uttered the title of this post—kind of the Braavosi version of never say die.

I bring this up because I survived my first week back to school. You may laugh, but I seriously had my doubts. All week, I have caught myself muttering under my breath, over and over again, “What do we say to the god of death? Not today, not today . . .”

The stakes, you see, never get lower.

I took vacation last week to try and get some rest and prepare myself mentally for going back. Education. Work. Family. Money. Responsibility. If you aren’t careful, you find yourself eclipsed by categories. No thoughts exist beyond what’s next on the to-do list.

It just gets easier and easier to walk away from institutions of higher learning, no matter how much you may love them—no matter how much you love learning. And I love Rockhurst. In fact, Rockhurst may be my favorite place. But that didn’t mean it wasn’t hard to go back.

The older you get, there’s so much tugging you away.

My first two years at Rockhurst were when Patrick was at his absolute sickest. You’d think that after everything we went through then that this would be easy.

It’s not; in fact, it’s harder. I’ve accepted a lot more responsibility at work, which means I’ve been putting in long hours. I serve on four committees and chair two of them. I go to church when I can. I have friends and other family who do, occasionally, like to see me. And then there's the little niceties like sleeping, eating, getting my hair cut, and, er, watching Game of Thrones.

And, of course, there’s writing. I don’t know what I’d do if I couldn’t escape into my own head now and then.

While on vacation, Patrick had a whole slew of doctor’s and clinic appointments. I’m very pleased and excited to say one of those appointments was with a new physician, Dr. Steven Charochak, at St. Joseph Medical. Dr. Charochak is one of those rare, wonderful doctors who is interested in actually treating root causes rather than just symptoms—and by treat, I mean he’s not interested in just chucking more pharmaceuticals at the problem. In fact, his goal is to have his patients on as little medication as possible.

I wanted to kiss him.

So Dr. Charochak has actually taken Patrick off several of his medications, including the erythromycin. He has ordered a series of tests to see if there are other problems that might be causing the nausea and feelings of fatigue. In the meantime, he has recommended Patrick go off the high-protein diet and try eating carbs, especially in the morning to help stimulate hunger and aid digestion.

This was a week ago. And you know what?

Patrick has had a great week.

He hasn’t thrown up once.

On Monday, he mowed the lawn.

On Tuesday and Wednesday, he’s done housework—not easy stuff, either. Vacuuming, which required him to haul the vacuum cleaner upstairs, and mopping.

While I was in class last night, my brother came over and the two of them went for a walk around the neighborhood. Then my brother came over again this evening and took Patrick out to play Frisbee golf.

And best of all—Patrick has gained three pounds.






So what do we say to the god of death?

Not today, motherfucker. Not today.


Thursday, June 2, 2011

DaVita Loca

I am not a political creature. Not even slightly. If someone turns on the news, I find myself flashing back to age eight or nine, when they stopped showing Saturday morning cartoons, and experience all over again my feelings of dismay as I wonder where the hell Muppet Babies went.
I posted about this on my Facebook page last week. It’s taken me this long to get around to blogging on the subject because, really, I’d still rather be watching the exploits of Kermit, Miss Piggy and Gonzo.

I’m certain that what I’m about to say here is not original. But I felt that our experience was worth adding to the general discussion on medical marijuana.

While I am not political, it’s just not in my nature to let things go.

I had joined a support forum for dialysis caregivers through DaVita, a “leading provider of kidney care in the United States, delivering dialysis services and education to patients with chronic kidney failure and end stage renal disease.” When Patrick was first diagnosed with his disease, we referred to their website a lot for diet tips and other information. Recently, I have started frequenting their forums to connect with other caregivers.

As I mentioned in previous posts, we have been wrestling for over a year now with Patrick’s stomach issues. On the DaVita forums, it is probably the single most common complaint. Patrick and I have found out recently that for patients who do peritoneal dialysis, a slow-down in the digestive process is also common.

Last March, when he first started experiencing nausea, it coincided with several other stressful events. In one three-week span of time, we went through a string of emergency room visits; then I had my trip to St. Louis for a conference, a black-tie event hosted by my organization, several other major projects, a research paper, finals, financial stresses and I damn-near suffered a nervous collapse. It was at this juncture that I opted to take this year off from school. It was the best decision I could have made at the time.

So as soon as I was out of school, I turned my attention to finding ways to help Patrick’s appetite problems. He was still losing weight, and becoming depressed to boot.

I discovered there is very little literature available for dialysis patients. So I began checking out websites for chemo patients to see what helps them. We tried everything.

By everything, I mean, we tried everything from psychological tricks to herbal remedies. I was ready to take him to a witch doctor if I thought it might help.

From the psychological, I tried solutions like: “make sure your table is as inviting as possible.” Sure. I could do that. So I tried setting the table with flowers, candles, folded napkins-- the works. That, in conjunction with his favorite foods . . . still didn’t make him hungry. In fact, the scent of food made him gag.

With herbal remedies, we tried ginger in all its permutations—teas, candied, fresh, dried. No luck. We tried other types of teas and herbal supplements, including mint and chamomile, among various infusions and even some tinctures. Still no luck.

We tried changing what he ate and the order he ate it in. We tried changing the time of day he ate. Chemo patients are advised to suck on popsicles to soothe the throat and esophagus—Patrick is anemic and prone to chills. So that made him cold and nauseous.

Some of the other kidney patients at the dialysis clinic recommended marijuana. I was desperate enough to try it. But I did some research and . . . we’re in a drought right now due to the drug cartels fighting in Mexico. The cost, when you can get it, is $30 for a quarter of an ounce, for schwag, which might last a week if you stretch it. So we’d be looking at $120 a month, minimum. Yowza. That would be in addition to the hundreds of dollars a month we spend on prescriptions already-- Medicare does not cover our prescriptions. My insurance covers most of them, but you know what copays are like. On average, we spend about $260 a month for medications.

So we talked to our doctors about it. You may be surprised to know that most of them were all in favor of the idea, and if it were legal in Missouri, they would write a prescription for it immediately. In fact, one of our doctors petitioned our insurance company to try to get Patrick approved for Marinol, but the insurance company wouldn’t shell out for the stuff. They’re perfectly willing to pay for all the narcotics we want, but not synthetic marijuana because . . . well, I guess because it’s got a sordid reputation. Not at all like that morphine, codeine, valium, Hydrocodone, or any of that other hillbilly heroin that not only are doctors only too willing to prescribe to people like Patrick, and pharmacies are willing to fill, and the insurance companies are willing to pay for without blinking . . . things that are highly addictive . . . or, if one were feeling entrepreneurial, would fetch a nice price in the drug trade . . .

But marijuana? Marijuana is BAD!

I'm paraphrasing here, but from what I understand, that's the sum total of the argument. Gateway drug, blah-blah, funds terrorism, blah.

So we went through a variety of medications for nausea and appetite, including Periactin that caused nightmares and hallucinations, (Patrick awoke screaming at night), and Reglan (which is the one that induced a psychotic episode). But again, all these are okay with the FDA.

I speak not only as a caregiver, but from firsthand experience as well. I’ve had migraines since I was seven years old. I, too, have had doctors all but fling narcotics at me. I, too, have taken Periactin, and other drugs that have been described as, “perception-altering.”

“Oooh,” I said. “You mean psychedelic?”

That earned me a stern look from the doctor. “Perception. Altering,” he corrected.

Oh, well, excuse the hell out of me. It amounted to the same thing—I would never be allowed to join the military or the police force.

In April, the gastroenterologist prescribed liquid erythromycin, of all things – a common antibiotic -- for Patrick’s nausea. He takes a few drops twenty minutes before he eats, and then at bedtime. It helps aid the digestive process and even stimulates his appetite a bit. Not a lot, but a bit. The important thing is Patrick has stopped throwing up so much. Unfortunately, his weight is still down. In fact, he is down twelve pounds since April.

We saw the gastroenterologist today for our follow-up appointment. The doc has upped the dosage on the erythromycin, so hopefully now Patrick will also start having a better appetite.

But you know what would just be easier? If he could just toke and get the munchies. Would that be so horrible?

No. Because you know what is horrible? Watching a loved one vomit over and over again. Holding the trashcan for them because they can’t make it to the bathroom because they’re hooked up to the goddamn dialysis machine. Watching the weight come off and wondering if they’re going to be able to eat that day. Feeling their bones start to poke against you when you hug them. Feeling their skin begin to wither to the quality of rice paper. Getting desperate. Knowing that you will do whatever it takes.

If that happens to include smoking a funny-smelling little cigarette, then so be it.

In discussing this on the DaVita forums, I went through this very list of experiences in discussing nausea and vomiting issues with other caregivers. I don’t recall my exact post (because the moderators at DaVita have deleted it), but I advised another poster, something to the effect of:
“See a gastroenterologist to rule out problems unrelated to dialysis and kidney failure. Try herbal remedies and teas. If phosphorus isn’t an issue for you, you might be able to make do with protein shakes to meet daily protein requirements.”

I mentioned problems we’d had with some of the pharmaceuticals, as well as the success we’d had with erythromycin.

Then, I said something like, “I don’t know what city/state/country you’re in, but I’ve heard several dialysis patients say they’ve used marijuana to great effect with this problem. It kills nausea, stimulates appetite, and helps with general anxiety and pain. Good luck.”

It’s not like I told anyone to go out and blaze up. I didn’t tell anyone to grow or sell.
DaVita's slogan is "Giving quality to life."

As I’m writing this, medical marijuana is legal in 16 states and the District of Columbia. It’s pending legislation in 10 more states. So within a year, it could potentially be legal in 26 states, or half the country. But for merely suggesting that someone investigate medical marijuana as a possible solution for relief for their loved one, my post was deleted and I was unceremoniously booted from the DaVita forums-- my account has been disabled (what a disturbingly apropos word). Correct me if I'm wrong, but a forum exists to allow users to exchange information. So how can I do that if I am censored? The information that I posted was not incorrect, indecent or illegal.

A stoner friend of my brother's once said, "You can't OD on pot. You know what the worst thing that'll happen if you smoke too much pot is? You make yourself a peanut butter and Fruit Loop sandwich and go to sleep."

Truer words, my brother. Truer words. I wish for nothing more than for Patrick to crave a peanut butter and Fruit Loop sandwich.

And for now, I'm going to climb down off my rare soap box and go see if I can scrounge up some Muppet Babies episodes on YouTube.