Tuesday, March 03, 2015

Shaking Hands with the Devil for Health's Sake

I write about my disability regularly because I don't want it to remain invisible. Within the disability movement itself, there are distinctions based on means of perception none of us can control. The man who lives downstairs from me has a clear and visible disability, completely undeniable, just as prominent as his harsh Boston accent with its hard, almost percussive A's. He finds it difficult to go up and down stairs but, like each of us, fights his limitations every day and does what he can.

The man in question shuffles upstairs and downstairs gingerly, slowly, but with great purpose. He walks with the aid of a cane, but is too proud to accept anyone's charity or sympathy. Those who seek to be helpful and hold open doors are greeted with a disapproving stare and grunt. Out of my way, he says. As for myself, I've been too proud myself to let bipolar disorder sideline me for very long. Today I feel really awful, but I want to share my words and thoughts. I never was the type to want to lay fallow.

Speaking about mental illness is now acceptable conversation. For that I am extremely appreciative. Ideally, I wouldn't have to explain myself, but I'd rather educate others than let the details go otherwise unnoticed. The disabled community is broad and expansive, and yet I find myself disinclined to identify myself fully with that movement. I often view a motley gang of cranky people, each feeling resentful in a slightly different way for a slightly different reason. Each of us expresses pain in different ways and everyone has a horror story to share. If I wanted to, I could add my voice, but I will refrain for now.

I could feel resentful at lots of things: insurance companies even post-Obamacare, clueless doctors, and death by a thousand cuts, the innumerable headaches caused by mutual misunderstanding of an unnecessarily complicated system. And yet, I would rather live with the hand of cards I was dealt than rage against the light. I already live in Protest Central, also known as our Nation's capital, and I doubt the presence of thousands of wheelchairs and motorized scooters descending on Capitol Hill would do much good. What is needed is funding for better medications, better treatments, more effective rehabilitation.

Back to my own story. Tapering off of one antidepressant to get onto another was an unpleasant experience, one concluded yesterday. Most antidepressants give marching orders to the soup of neurons located in the brain. These commands tell the neurons how to line up, how they ought to behave, and a variety of other directives. For reasons unknown, my brain does not produce enough of three primary and very essential chemicals. They are, in no particular order, serotonin, norepinephrine, and dopamine. Each antidepressant works slightly differently in where it places its focus. Some work mainly on serotonin, others target dopamine receptors.

Twenty years ago, the first SSNRIs like Effexor or Cymbalta were developed. I was one of the first to try them. At lower levels, serotonin was boosted substantially. But at higher doses, if needed, so too was norepinephrine. One of the major drawbacks of this class of drugs was that discontinuation syndrome was extreme and led to many having to be hospitalized to completely wean themselves off of the drug. That very nearly was the case with me and it took psychiatrists several years to realize how intense discontinuation syndrome was for those who'd been on the medication.

Now I'm on an MAOI inhibitor, a very strong and effective drug with some unfortunate food interactions. It's in the form of a transdermal patch called Emsam, which cuts down on the reactions considerably. Because it doesn't pass through the GI tract as a pill would, absorbed through the skin instead, I don't have to worry about eating a tiny bit of something verboten and causing a hypertensive crisis. I've had three hypertensive crises already and don't want to have another. During them, my blood pressure and pulse reached dangerous levels and each spike came in terrifying waves, one after another.

As much as I dislike capitalism, I find I have to work within its confines. Though I can't believe I'm actually saying this, I would prefer to work within the system. New treatments for mental illness are expensive and time-consuming. What we have already is fine for some and insufficient for many. I don't want to entertain this argument, but I may have no choice but to strike a Faustian bargain. The more money Big Pharma makes, the more money it can allocate towards the research and development of more effective medication. I think it's completely ridiculous that a 30 day supply of Emsam should cost $1200 out of pocket, but I'm sure the manufacturers' accountants can come up with substantial justifications and rationalizations.

In this situation, I would rather work within than outside. Though I think a system of socialized medicine would be fairer for everyone, I can't fight the views of many Americans, who fear big government and Washington, DC, telling it what to do. A for-profit system at least rewards those who come up with the next big thing. Hopefully, that next big thing will be a new antidepressant, one without potentially fatal side effects. I know for a fact that new treatments are underway, but everyone's waiting on the next big breakthrough. Let it be soon.   

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