One week into tapering off Savella, which would not have been possible save for my paranoid hoarding of medicines I’m prescribed, death is not yet preferable but an ax would be. Or dismemberment by train. I am disjointed as it is, a slow drip of water sieved out of noodles, legs that periodically go missing, arms I can find, but don’t want to, because there is an ache deep in my shoulders and armpits like excavation gone awry. A long probing finger wiggles for purchase behind my breastbone, poking me tachycardic, 137 bpm at rest. Side effects. If there is nothing good in the world any more, I’m supposed to remember that’s a side effect, too.Continue reading
I want you to know you’re killing me.
You always were. It isn’t news. But assume your postures of defense if you think I’m wrong. Tell me you’re protecting the economically disadvantaged in dire straits, stripped of health care because they can’t afford it, and what could I possibly know about that; and I promise, I promise, I won’t tell you in return how I teach a 4:4 load, tutor four hours a week, do freelance editing, and still have to ration out my doctor visits with a careful hand and weigh the costs of medication against the costs of my next meal. I won’t tell you how before ACA I had to ration physical therapy visits because of lifetime caps per body part and condition, or that I suffered pain like slow implosion for years before accepting a prescription that made life livable, because I couldn’t afford it. I won’t breathe a word about how all the proposed cuts, if I choose to live with them, will leave me with the kind of debt you can’t breathe through, like what ought to take your breath away, but won’t, the knowledge that millions like me or worse are imperiled by you.Continue reading
A while back a friend of mine proposed the following theory: I’m actually a Saiyan, but because my body isn’t taking enough damage in battle to level up as it ordinarily would, it has to take the initiative to fight itself so I can achieve my next power level. I wouldn’t say I’m over 9000 by any stretch of the imagination, but.
But like always I’m using humor to minimize how far this situation spiraled out of control.
One month and one emergency surgery later, I’m healing well and readjusting to basic movement and day-to-day living, and my mood is so improved that I can only think my exacerbated depression lasted so long not because of Lyrica withdrawal, but because for three weeks my body was struggling to inform me that it was dying.
To summarize:Continue reading
I’m quoting Jake Jackson, from this article at phdisabled, which I skimmed when it was published but read more closely yesterday, on the subway, legless and crawling before the realities of health care. Again it brought me to the edge of tears, as words do when they tell my experiences back to me in a form I was previously unable to grasp.
This is my current abyss.Continue reading
My to-do list is a mile long, so obviously I’m updating my blog. In my absence, I’ve been publishing creatively—check out my pieces in r.kv.r.y and DIAGRAM if you haven’t already followed all my buzz about it on Facebook or Twitter—reworking my novel for the final time, and teaching three courses, while attempting to read a book or two for that dissertation proposal I have to write, probably sooner than I’d like to. Besides all that, I’ll break down my life like this: Fuck you, American healthcare system; and fuck you, American system of education that accepts the semi-hazing process of working yourself to the bone to simultaneously finance a higher degree and survive; and fuck you, government standards of disability that indicate that if you are at all functional, you’re not in enough pain to qualify for anything.Continue reading
Last year, a 20-year-old man named Michael Israel committed suicide after battling addiction to painkillers. His father, Senator Tim Kennedy, and Attorney General Eric Schneiderman blamed the system, ultimately proposing a legislative package to “Save the Michaels of the world.” Thus, in an effort to crack down on prescription drug abuse, namely over-prescribing on the part of physicians, New York State enacted the I-STOP (Internet System to Track Over-Prescribing) Act one year ago. It takes effect on August 27th, along with its Prescription Monitoring Program (PMP), which apparently insecurely records, tracks, and transmits patients’ medication histories, dates of attempted and dispensed refills, and so on.
Somehow I missed this memo until yesterday, when I was confronted with the ugly reality that, thanks to I-STOP, I can’t get a refill prescription until after the new system takes effect.
In its overzealous quest to save the Michaels of the world, the State has blatantly chosen to ignore the undue burdens placed on those who medicate responsibly, and with all the hardships it already places on patients and providers, why am I surprised?Continue reading
In my life as it was prior to my diagnosis, in the course of my usual exploration of the Internet, I came across the Schmidt Sting Pain Index. It is an imprecise but admirable attempt to catalogue and describe the pain caused by Hymenopteran stings. I possess an amateur fascination with entomology and herpetology and with Schmidt’s original paper, which assigned a perhaps inexact number to each sting but accompanied each with a refreshingly creative description of the pain. An entomologist, Jason O. Schmidt was inadvertently stung by several members of Hymenoptera in the course of his research and realized the the potential uses of quantifying pain. Though it wasn’t his primary research, he didn’t waste the data; instead, he created a five-point scale from 0-4 to classify the kinds of pain one receives from being stung (The Straight Dope). Archetypal representatives are listed below:
- 0: Imperceptible. The stinger doesn’t penetrate the skin.
- 1-range: Sweat bees (light, ephemeral, almost fruity); fire ants (sharp, sudden, mildly alarming); or the bullhorn acacia ant (someone has fired a staple into your cheek).
- 2-range: The bald-faced hornet (mashing your hand in a revolving door); or the yellow-jacket (hot and smoky, like W.C. Fields extinguishing a cigar on your tongue).
- 3-range: The red harvester ant (bold and unrelenting, like someone is drilling your ingrown toenail); or the paper wasp (caustic and burning, with a distinctly bitter aftertaste: like spilling a beaker of hydrochloric acid on a papercut).
- 4-range and higher: The tarantula hawk (blinding, fierce, shockingly electric, like a running hair dryer dropped in your bubble bath); or the bullet ant (pure, intense, brilliant pain, like fire-walking over flaming charcoal with a 3-inch rusty nail grinding in your heel).
In my life post-diagnosis, this scale has taken on new meaning.
Fibromyalgia syndrome (FMS), a chronic systemic pain condition that is especially heightened by pressure, can range from a 1 to a 4+ on Schmidt’s scale but rarely, if ever, is it a 0. The symptoms are unique to each sufferer, but in my experience the pain has ranged from acute and persistent, like clasping a lit electric bulb between your bare hands, like blades sunk deep in a flexing muscle, like pricking, itching needles, noisy on the skin, like a sweaty fist working your heart, like vivisection, no sleep agent, no anesthesia.
This piece is for those medical professionals who wrote me off as healthy because I was professionally dressed, “I looked too good to be unwell,” or who asked me, point-blank, “And you’re sure it’s not all in your head?” It is for the people who tell me, with a tired, tolerant patience they don’t deserve to have, that “pain is largely psychosomatic, you know? Just stop thinking about it and it’ll go away.” It is for the countless, awkward Schmidt 4.0+ days I’ve had to dodge a well-meant hug, or flinched at a touch I couldn’t avoid. It is for Empire Blue Cross Blue Shield, which has conferred upon itself the godlike ability to decide whose pain is deserving of extended outpatient treatment. (Hint: mine no longer is.) It is for the people who sympathize but do not or cannot understand because I appear more or less functional. It is for the Schmidt 1.0 days, when I lull you into thinking I’m “better,” or the predominant and tolerable 2.0-3.0 days, when controlling my outward response can be performed through sheer will.
Mostly, though, it is for all the times you have not seen me break down and cry, on the subway, in line for a bus, on the NJ Transit stairs, on the walk from the train station to campus or from one classroom to another or in the bathroom during class breaks. It is for all the times I couldn’t take it, and you never knew.Continue reading
By now I’m sure we’ve all heard about Union Square, Washington Square Park, the Brooklyn Bridge, and other city sites that have been marched on; we’ve all seen the video clips circulating on the Internet, read about the original July call put out by AdBusters, and the supposedly unintentional or accidental censorship of emails and Tweets with the Occupy Wall Street phrase or hashtag. It does seem ridiculous that with the Occupy movement spreading to Washington D.C., the White House lawn, Los Angeles, Detroit, and banks and other corporate institutions everywhere, Twitter is currently trending #PeopleWhoAreOverrated and #moviebands.
Vibe, on the other hand, is overrrun with messages from Anonymous, the hive mind, bagpiper, and other similarly (un)identified individuals updating each other on Occupy Wall Street and the other Occupy movements springing up around the country and worldwide.Continue reading