Tuesday night, I had what my pharmacist describes as an allergic reaction to methotrexate. Within two hours of injecting it into my thigh, I developed nickel- and quarter-sized hives on my knee and elbow pits. My breath was short. My heart palpitated.
With any other patient, with any order condition, with any other drug, these symptoms would be a classic allergic reaction. Any doctor would tell you to stop taking it. When you’re dealing with autoimmune diseases, this could almost mean anything.
A classic allergic reaction is caused by the immune system’s hypersensitivity to a typically harmless substance. Treatment for such a reaction is usually a drug that mildly suppresses the immune system. For example, diphenhydramine (Benadryl) is an antihistamine that treats all sorts of mild allergy attacks and cold symptoms. It is a common ingredient in NyQuil and other over-the-counter cold medicines. Doctors use another common immune system suppressant, prednisone, to treat asthma and rheumatoid arthritis. I also take it to treat my dermatomyositis.
Methotrexate is a heavy-duty immune system suppressant. The irony of an immune system suppressant causing an allergic reaction was not lost on my pharmacist or my internist.
Such a reaction after being on the medication since October is odd, but according to my pharmacist, very possible. Also odd: shortness of breath is a symptom of untreated dermatomyositis. However, hives are not. And this is the second week I have had them after injecting myself with methotrexate.
Because I only take the drug once a week, I have already discontinued it. I made an appointment with my rheumatologist for next week. I will most likely switch to a different medication, most likely, another immune system suppressant, azathioprine.
In Nothing Is True and Everything Is Possible, Peter Pomerantsev pulls back the curtain on twenty-first-century Russia, revealing the world’s biggest country may also be its most deluded and its most corrupt.
He shows readers a Russia that has “seen so many worlds flick through in such blistering progression—from communism to perestroika to shock therapy to penury to oligarchy to mafia state to mega-rich,” and left its inhabitants with “the sense that life is just one glittering masquerade, where every role and any position or belief is mutable.”
Peter Pomerantsev in Nothing Is Real and Everything Is Possible beautifully describes for readers Russia’s transformation from a post-Soviet republic searching for an identity to a postmodern mafia state.
Airing Russia’s Dirty Laundry
Pomerantsev is a former Russian television producer for TNT. There, he helped kickoff shows ranging from Russian remakes of Married with Children to a never-aired miniseries on a mafia-run Siberian town written and directed by a gangster. The latter mocked Russia’s mafia politics, where leaders are made to look like gangsters, unlike Western politicians, who “act like upstanding citizens,” and Hollywood “is obsessed with the underworld.”
His exploration of Russia’s underworld begins with stories of strippers and gold diggers. They come to Moscow from Siberian mining villages and St. Petersburg slums to compete with Russia’s endless supply of world-renowned beauties for a chance at a better life, one sponsored by Moscow’s newly minted sugar daddies. These “Forbeses”—so called because of their place on the Forbes list—refer to the girls as tiolki, or cattle.
The fatherless tiolki start at eighteen and hone their craft at a Gold Diggers Academy run by a 40-year-old woman with an MBA. After securing a sponsor, in exchange for exclusive sexual rights with a mega-rich man, they get an apartment, a car, a $4,000 month allowance, and twice yearly vacations in Turkey or Egypt. Once their sugar daddies grow bored, the girls land on the streets without a penny to their name. By the time the girls turn twenty-two, most Forbeses no longer want them.
Then, there’s Dinara, a young Muslim woman who fled Dagestan—a republic in the North Caucasus, near Chechnya—to study in Moscow. She wanted to escape the influence of the Wahhabi preachers from Saudi Arabia. They took over her hometown and convinced local girls to become suicide bombers. Unable to find a good job after failing her university entrance exams, Dinara turned to prostitution. She had not touched her Koran since she entered the world’s oldest profession, afraid Allah would never forgive her.
Through his research and his front-row seat to the manufacture and consumption of Russian entertainment, Pomerantsev realizes the game the Kremlin is playing. More totalitarian regimes like the Soviet Union closely controlled their propaganda, forbade criticism, and failed to laugh at humor. Putin’s New Russia has transformed Juvenal’s bread and circuses from a lament into an art form. “The new Kremlin actively encourages people to have a laugh at its expense.”
Deconstructing the Kremlin Matrix
Pomerantsev also produced the story of thirty-something executive Yana Yakovleva. She was arrested by Russia’s drug enforcement agency (FDCS) for selling the chemical cleaning agent diethyl ether. Despite having a license for its importation and sale, FDCS officials charged her with distributing illegal narcotics.
“Black is white and white is black. There is no reality. Whatever they say is reality,” Pomerantsev writes.
Yakovleva then spent seven months in jail, awaiting trial, trying to understand why she was arrested for selling something she had been legally selling for years.
As Pomerantsev explains, Yakovleva was caught in a Machiavellian political trap set by former KGB officer and now head of the FDCS, Viktor Cherkesov, to break the chemical and pharmaceutical industries. He was upset Putin did not make him head of the FSB and wanted to prove his rival, FSB head Nikolai Patrushev, was a weak link.
Yakovleva ignored multiple attorneys’ advice to pay a million-dollar bribe, refusing to believe she had done anything wrong. She eventually won her trial and now leads campaigns against corruption and bribery.
In Russia, black is white and white is black. Reality is whatever those in power say is reality.
Pomerantsev admires her strength and perseverance but fears she is the exception, not the rule. After all, 99 percent of defendants are found guilty at Russian trials. And when he airs the story on Ostankino, Pomerantsev is forced to cut “the high-level political stuff,” including Putin, Cherkesov, and Patrushev, basically shielding the truth from Russian eyes.
Delirium: Any Means to Escape
Kazakh-Russian supermodel Ruslana Korshunova made world headlines when she died in June 2008 after falling from the ninth-floor balcony of her Manhattan apartment. Authorities called it a suicide, but her mother refused to believe as much. Pomerantsev theorizes her death was related to her involvement in the Rose of the World.
Supermodel Ruslana Korshunova was nicknamed the Russian Rapunzel for her flowing blonde hair and spellbinding eyes. Pomerantsev describes them as “large and wolf blue, the light of her Siberian ancestry.” She made world headlines when she died in June 2008 after falling from the ninth-floor balcony of her Manhattan apartment.
Modeled after Lifespring—whose methods caused mental damage in their participants and in 1980 went bankrupt after being sued—Rose of the World has been denounced as a cult and encourages participants to share their worst experiences and recall repressed memories. After three months of training sessions, Korshunova left Rose of the World. A few months later, she was found dead.
Ukrainian model Anastasia Drozdova also attended the training sessions with Korshunova. She killed herself under similar circumstances in 2009.
Pomerantsev himself investigated Korshunova’s death. He includes it—along with the other tragedies about strippers, gold diggers, and prostitution—in his book to illustrate how desperate Russians are to escape, to find life and meaning in a nation without either.
“Look at these girl, they’re all lost,” he quotes former model and psychologist Elena Obukhova.
Meet the Russians
Pomerantsev closes with the story of a $5.8 billion lawsuit over ownership of an oil company between Russian oligarchs Boris “Godfather of the Kremlin” Berezovsky and Roman Abramovich.
The suit was less about money and more about power. After all, Berezovsky took credit on his own Facebook page “for bringing the president to power…for destroying freedom and speech and democratic values.” He understood how television could bring men to power. He created the “fabricated documentary.” He invented barely credible scandals to topple Vladimir Putin’s opponents. He “invented the fake political parties, television puppet constructs, shells without any policy whose point was to prop up the president.”
He became a victim of the very people he elevated, the very entities he created. His own channel, Ostankino, “cast him as an eternal bogeyman…blaming him for everything from sponsoring terrorism to political assassinations.” He created the Russian system and molded [Putin] before being exiled by his own creation.”
Berezovsky’s confession was lost on the English judge presiding over the suit, who found the progenitor of modern Russia “an unimpressive and inherently unreliable witness,” who, like so many Russians, regards “truth as a transitory, flexible concept…to be molded to suit his current purposes.”
The trial cost Berezovksy everything. Legal fees alone totaled $100 million. Six months later and rumored to be destitute, he sold an Andy Warhol silk-screen print of Red Lenin for $202,000. Three days after that, following what has become a common theme in the country with the world’s third-highest suicide rate (former Soviet states Lithuania, Kazakhstan, Belarus, Ukraine, and Latvia also top the list), Berezovsky hung himself in the bathroom of his ex-wife’s Ascot mansion.
Though the master is dead, his teachings live on. “Make, steal, siphon your money off in Russia. Stash it in New York, Paris, Geneva, and especially London.” Berezovsky’s apprentices took his lessons to heart.
Abramovich is Russia’s eleventh richest person, Israel’s first, and between 2000 and 2008 served as governor of Chukotka, the Russian province opposite Alaska on the Bering Sea.
Vladimir Putin rose from obscurity to the presidency in a few short months. He then became prime minister, then president again. As the head of state, he has replaced Berezovksy as Russia’s godfather.
Godfather of Russia
Putin purged Russia of its Boris Yeltsin-era oligarchs, those men who got rich helping Russia transition from a command to a market economy. Those remaining had brokered deals with Putin and his inner circle, trading political allegiance for economic favors.
At the same time, the mafia dons running protection rackets in towns and cities across Russia have been replaced by equally violent, immoral friends of Putin.
Russian defector and former FSB officer Alexander Litvinenko accused the FSB of staging apartment bombings and other terrorist attacks to bring Putin to power. He accused Putin himself of ordering the murder of journalist Anna Politkovskaya. Within a month of the accusations, Litvinenko was hospitalized and died from poisoning by radioactive polonium. Investigators found he was murdered by the FSB. His death was likely approved, if not ordered by Putin.
Under Putin, Russia backed a rights-violating government in Syria and invaded Ukraine. His regime granted asylum to American political dissident qua traitor Edward Snowden. Many say Putin’s cronies meddled in the 2016 election, placing a pro-Putin president in the White House.
In effect, Putin is the master of Russia’s own puppet show, giving its citizens just enough cord to let them think, act, and speak as they want without ever questioning what’s going on behind the curtain. He lets the press mock his government, his tough-guy public image, his nation and its culture, provided they only tell half the truth. Like some Orwellian propagandist, Putin and his Kremlin allies “switch messages at will,” allying themselves with European right-wing nationalists to ridicule the EU, with the far left to condemn US hegemony. He is whoever Russia needs him to be.
Russia Has Become a Mafia State
Anarchists
often compare
the state to a mafia, a crime syndicate that demands your money in
exchange for your protection and your life. For
this, we are laughed at; our observations are dismissed as the jaded
perspectives of puerile,
tinfoil-wearing psychopaths struggling with modernity.
Yet twenty-first-century Russia, Litvinenko observed, is a mafia state. Pomerantsev agrees, painting a surreal image of a land where oligarchs and dons have filled the post-Soviet political void, where postmodernism has become the unofficial state religion: Truth is transitory and mutable; it is whatever those in power say it is. Like those woken from the Matrix, nothing is true and everything is possible.
Editor’s Note: This is my first review for the new Anarchist’s Bookshelf series. I read author’s against authority you don’t have to (but you can if you want).
Despite having dermatomyositis—my condition in which my immune system is attacking my skin and muscles—I’m still getting stronger. My skeletal muscle mass and body fat mass is better than I expected.
Despite battling dermatomyositis, my body fat mass is right where it should be and my skeletal muscle mass is above average. I’m even stronger than I was a couple months ago.
Saturday, my girlfriend and I went to the Nutrishop in Tempe to stock up on workout supplements and enter ourselves into a competition. The $1000 shopping spree goes to he or she who loses the most weight and grows their skeletal muscle.
Much to my surprise,
my numbers came back very good. My body fat mass is right where it
should be and my skeletal muscle mass is above average. In short, I’m
stronger and healthier than I sometimes feel.
Hydroxychloroquine is cheap, relatively safe, and controls the heart and muscle inflammation associated with dermatomyositis.
Hydroxychloroquine controls heart and muscle inflammation
This past weekend, I ran out
of hydroxychloroquine, an antimalarial drug used to treat autoimmune
diseases. By Monday, my heart started racing and palpitating. My
lungs felt constricted. Both felt like they were on fire. My throat
seemed to be closing, as though I had a piece of food stuck in it.
Doctors call these symptoms myocarditis and dysphagia, respectively. Basically, along with my skin and skeletal muscles, my immune system is attacking my heart, diaphragm, and throat muscles. Oddly enough, clinical tests show nothing. My resting heart rate is a healthy 55 beats per minute. My breathing tests were normal.
I also could hardly
concentrate. Much like when you have the flu or are weight lifting,
all you can think about is your body’s stress and pain. Much like
when you feel anxious or drink too many double-shot espressos, your
racing heart makes it tough to read and write.
I forgot all of these symptoms and have not experienced most of them since I started treatment in August. Because I mismanaged how much hydroxychloroquine I had left, they returned within 24 hours of exhausting my supply.
When refilling a prescription is worse than managing a proposal
Trying to understand refill
procedures with my local pharmacy is like trying to communicate with
project managers building the Tower of Babel.
Speaking of the ancient world,
to remedy the situation, the pharmacist sent my rheumatologist a fax
for the refill.
As a Denver Broncos fan, I know all too well the dangers of faxing in the 21st century, so I sent my rheumatologist a message through his online portal Monday. No response. I called the office Tuesday. His medical assistant’s voicemail says she will call back within 24 hours. She did not.
By Tuesday evening, I gave up
and phoned my dermatologist, who is always on top of things. Within
45 minutes, the pharmacy cleared my refill.
Treating autoimmune diseases with hydroxychloroquine
Today, after taking 200
milligrams of hydroxychloroquine last night and this morning, my body
is returning to normal. No more heart and lung issues. My throat
feels less swollen. I will not mismanage my prescription again.
First developed in 1955 for
treating malaria, hydroxychloroquine is the first-line treatment for
dermatomyositis and lupus. Compared to other immunosuppressants, it
has few side effects and is so safe pregnant women can and do take
it. Better still, it costs next to nothing; even without insurance, a
month supply is less than $25.
The only downside is long-term
use of hydroxychloroquine can be toxic to your eyes. To make sure
nothing like this happens, I take the recommended daily maximum dose
and have an ophthalmologist as part of my care team.
Even though 2019 will seem just as crazy, backward, and obscene as every other year people claim to loathe, ultimately, like 2018, we will not just survive; we will be better off by its end.
Many people, myself
included, wished good riddance on 2018.
Yet, with 2019 still emerging from the neonatal intensive care unit, pundits and economists are already predicting doom and gloom. Trump’s trade war is expected to slow the U.S. gross domestic product through 2021. Inflation is expected to rise.
Of course, all
economists are notoriously bad at forecasting recessions—and they
have been for centuries.
Intellectuals have mostly been wrong about the future
English cleric turned soothsayer Thomas Malthus predicted in 1798 we would never produce enough food to feed a geometrically growing population. Limited food supplies would lead to society’s ruin. Today, Earth is home to more than 7 billion human beings. Farms worldwide produce over a quadrillion kilocalories—enough food to feed 10 billion people.
Looking at what he
considered the capitalist exploitation of labor, Karl Marx prophesied
the proletarian revolution and the coming of a communist utopia.
Though his fervent disciples continue to insist on his accuracy—and
continue to wait for a non-totalitarian version of their utopia—most
intellectuals agree he was dead wrong.
His theory of exploitation was disproven in theory in the nineteenth
century by Austrian economists Carl Menger and Eugen Böhm-Bawerk and
in reality in the twentieth century by the survival of capitalist
institutions. Regimes based on his ideas fell as fast as they rose
and killed 100 million people.
Contemporary cynics operate largely on Malthusian and Marxist ideas.
As Todd Buccholz explains in New Ideas from Dead Economists, alt-right talkingheads stomping their feet for border walls and trade tariffs are the intellectual descendants of Malthus. So too are environmentalists who year after year change their predictions of when humankind will eventually destroy ourselves and our Earth.
Today’s progressive clamoring about an unjust world run by greedy white, male sexual deviants is yesterday’s Bolshevik bitching about a bourgeois society ripe for revolution. Trump supporters combating cultural Marxism with their own brand of identity politics are merely buying into the Marxist narrative that capitalism is a zero-sum game.
Todd G. Buccholz makes the history of economic thought accessible, useful, and fun. He reminds us ideas, even bad ones, rarely die; they adapt. No doubt intellectuals will try to ruin your 2019 by resurrecting Malthus and Marx’s thoughts.
Lessons from trying to predict the future
The lessons from Malthus, from Marx, and from your resident Facebook doomsayers are:
Predicting the
future is fraught with peril. Controlling the future is impossible.
Don’t let people who profit from fear make you deranged. If you’re reading this, you’re still alive. You’re not starving. You’re probably healthier than me.
Utopias cannot be planned and rushed. Let progress unfold in its own time.
The world is never as bad as those in power would have you believe. Violence, as Steven Pinker demonstrates, is the lowest its ever been. Europe has not seen war since 1945. Per capita income between 1960 and 2016 rose 183 percent throughout the world. Less than 10.7 percent now live in poverty, down from 42.2 percent in 1981. Never in our history have humans expected to live so long.
Don’t blame your current misfortune on the sitting president, on Congress, on the system, on the economy.
The president is a power-obsessed egomaniac stuck in Freud’s phallic stage who prides himself on his encounters with models and porn stars. He will be gone in a few years.
Congress is so out of touch with twenty-first-century reality they don’t understand how Facebook works. Humor columnist Dave Barry called the senators investigating Facebook’s role in their re-elections the “Senate Committee of Aging Senators Who Cannot Operate Their Own Cell Phones Without the Assistance of Minions.”
Economics are the study of human choice. Until Donald Trump, Mark Zuckerberg, or some senate committee has you starving in a locked cell, you control most of your choices, however constrained. You are the author of your own story. You own yourself.
Don’t let people who profit from fear make you deranged. Don’t be these people. If you’re reading this, you’re still alive. You’re not starving. You’re probably healthier than me.
Humans have steered our course upward for centuries. Even though 2019 will seem as crazy, backward, and obscene as every other year people claim to loathe, ultimately, like 2018, we will survive; we will be better off by its end. The story of humankind has a happy ending. So too will 2019.
For all of the alleged benefits of treating dermatomyositis with Otrexup (subcutaneous methotrexate), Antares Pharma doesn’t make it easy to take. They instruct you to once weekly jam a needle in your stomach or thigh. They ship the drug in this ominous yellow bag warning you the contents are for chemotherapy. Every single injector pen comes with a set of instructions and warnings longer than most college essays. Then, they request you return the cartridges in a biohazardous waste container.
I am calling out Antares for their study claiming 98 percent of patients say Otrexup is easy to use. Is it easy to take off the safety and look at the injector pen? Sure. But stabbing oneself is never easy.
By the time you work up the courage to open an individual box holding the cartridge, you’re so paranoid about the possible damage to your liver or losing your hair that you feel like Eric in the sarin gas chamber in The Rock: “You want me to stick this into my heart? Are you fucking nuts?”
Otrexup: Four Weeks later, I still can’t Stab myself
Four weeks later and I still cannot bring myself to stab myself in the thigh. My girlfriend does it for me. Sometimes, she seems all too happy to do so. No matter how silent she stays, I can hear her evil cackle. I wonder if she is not-so-secretly a sadist.
My blood must also be tested monthly to check for live damage. This wouldn’t be too bad, except that as America’s population continues to age, every blood center in Phoenix is full of grouchy, impatient, lifeless geriatrics. Though my girlfriend will say I will fit right in.
Is Otrexup worth it? It’s too early to tell. My rashes have receded. My nose is less red (with any luck, I won’t be guiding Santa’s sleigh). I do not itch as much. I am breathing easier and getting a bit stronger, but that progress could be attributed to going back on a moderate dose of steroids.
Side note: Kudos to Antares Pharma for providing first-time Otrexup patients with a coupon for no co-pay for a year. Even with the best insurance, subcutaneous methotrexate is pricey. No, they did not pay me to say that. The coupon is available on the Otrexup website to anyone with commercial insurance.
Wine is one of the most peculiar, particular substances ever invented by humans. Try as winemakers do to control and perfect it, so much of its production is beyond their control: Grapes are as finicky as plants come. Weather is unpredictable. Soil and geography exist independently of humans and where we choose to work and live.
And yet, by growing simple grapes in some of the most inhospitable soils in some of the most unforgiving places on Earth, we create the most complex, most beautiful beverages.
Priorat is made from the otherwise unimpressive garnacha grapes. But when grown in windy, semi-arid conditions in shallow, nutrient-poor soils in the Catalonian foothills, garnacha must develop deep roots to find water and nutrients. The result is invigorating wines with rich cocoa, raspberry, and tobacco aromas that rival the best in the world.
Similarly, as humans, we stress. We toil. We often work against ourselves and against each other. We must resolve issues given to us by families we never chose. We must yield to authority we often do not agree with or choose. We must invent tools and means to overcome nature. We often lose.
Like wine, the best humanity has to offer is often born of and must learn to overcome chaos.
Yet, like wine, sometimes the greatest among us survive the worst conditions. These men and woman beat the odds so often stacked against them. They write the works of literature that last the ages. They compose the symphonies and sonatas humankind will listen to centuries in the future. They invent the most indispensable tools. They change how we live. They enrich our lives. Like the world’s finest wines, we revere them. We remember them. The best humanity has to create and to offer is often born of chaos.
Tonight, my girlfriend and I watched Julie & Julia. The movie is based on Julie Powell’s year blogging and cooking her way through Julia Child’s cookbook, Mastering the Art of French Cooking. At the beginning of the film, Powell’s blog is slow. Her mother is her only commentator and reader. Worse, her mother discourages her.
I reflect on my own blog: seventeen weeks, twenty posts, 339 views, two comments from friends. Unlike Powell, my parents have encouraged. (My mom actually recommended I watch the film and got me Julia Child’s autobiography for Christmas last year.) Like Powell, so too has my girlfriend and my good friends.
All the same, running a blog is tough. Updating it is tedious and time consuming—especially when I, like Powell, have a day job. Readers are scarce. Rewards are few.
Is there anybody out there?
I often feel like Powell, asking myself, is it worth it? Will I ever catch a break, develop a regular enough readership? My words enter the digital black hole we call cyberspace, where little is truly seen but every thought, every letter, every phrase, every photo, for better or worse, becomes immortal. I, like Roger Waters, ask, “Is There Anybody Out There?”
I remind myself why I write this: Blogging, for me, is as much about expressing my ideas and promoting my novels as it is a series of therapeutic exercises for accepting my life as an autoimmune patient and a political iconoclast.
Blogging in the Age of Information Overload
Today marks exactly four months since I started this blog. I’m nowhere near ready to give up.
But times have changed since Powell blogged in 2002. People have never been so connected and consumed so much information. Americans alone digest 33 gigabytes of media every day. One cannot be just another Information Age culinary dropout or just another Web 2.0 desk-chair pundit.
What, then, must a man to do stand out in an age of narcissism? What can he do to bring order when so much of the world and so many people’s lives (including his own) seem to be chaos?
This weekend, I had the privilege of watching Five Finger Death Punch cover The Offspring’s “Gone Away” here in Phoenix. Three months ago, I watched Dexter Holland play the piano version of his own song from almost the same spot in the same venue.
Both singers paid tribute to friends they lost years ago. Before his version, Five Finger frontman Ivan Moody discussed his struggle with alcoholism and recent sobriety. He then asked the audience if they knew how much time they had left in life.
I turned to my friend and told him I did not want to think about that. The honest answer—for most of us, but especially me—is I don’t know.
As a writer and guitarist struggling with dermatomyositis, songs like “Gone Away” almost make me cry these days. They remind me, as Moody reminded us, of life’s transience and fragility.
Autoimmune patients taking methotrexate must avoid alcohol, according to most rheumatologists. So too say the makers of Otrexup (subcutaneous methotrexate). I messaged my doctor to double check: He agrees abstinence is best.
Not everyone agrees. Newer studies are changing some rheumatologists’ opinions. Many now say rheumatoid arthritis patients may consume alcohol in extreme moderation; in other words, a couple drinks a week is fine. Psoriasis patients, however, should avoid it.
So, where does that leave me? Since methotrexate is used off-label to treat dermatomyositis, all research on methotrexate and alcohol concerns psoriasis and rheumatoid arthritis patients. I can only trust my doctors and look at anecdotal evidence from other dermatomyositis patients.
Many myositis patients on online bulletin boards ignore doctors’ advice. “Live life!” they say. Others were told by their doctors a couple drinks a week is okay—just not on the same day as your injections.
One current complication for me is I am on prednisone and methotrexate. Both are hard on your liver. In fact, I can feel my liver throughout the day yelling at me. For me, until I get off the corticosteroids, alcohol is probably best avoided.
