Month: November 2018

Taking Otrexup: Stabbing Yourself to Save Your Life

Posted on Posted in autoimmunity, dermatomyositis, treatmentsTagged , , , , , , ,

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.

The best people, like the best wines overcome chaos

Posted on Posted in culture, existentialism, wineTagged , , , , ,

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 wine is made possible only because the grapes stress and struggle.
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.

Reflections on four months of blogging

Posted on Posted in culture, movies, writingTagged , , , ,

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?

“Gone Away” and life’s transience and fragility

Posted on Posted in culture, musicTagged , , , , ,

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.

Autoimmunity, methotrexate, and alcohol

Posted on Posted in autoimmunity, dermatomyositis, dermatomyositis, treatmentsTagged , , , , , , ,

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.