Life as an Extreme Sport

As reactions continue to race around the internet about Angelina Jolie’s double mastectomy and reconstructive surgery – the actual discussions, not the Monday-morning quarterbacking of her decision or the utterly vile “but what about her boobies” reaction from that particular subgroup of men who manage to amaze me by their continued ability to manage basic functions like breathing – I’ve been sent links. And more links. And then a few more. Most are relatively easy to dismiss because they’re quarterbacking a personal decision or they’re vile, but then you get the ones that tiptoe closer to decent – and they still have problems.

One that’s been flying around the internets today is the Maria Konnikova piece on Salon. I’m actually not terribly fond of this piece, or other pieces that hinge their complaint on the cost of testing and Jolie’s supposed privilege by virtue of her wealth. For one, let’s put the cost of testing squarely where it belongs: on the fact that Myriad owns the patent for the test (something that is being challenged in front of SCOTUS this June).

Secondly, almost no one remembers that the Affordable Care Act considers BRCA1 and BRCA2 tests to be part of preventive care, and that by January 2014, it must be covered for everyone, period. Yes, the pre-existing condition limitations and grandfathered insurance clause limitations means some women won’t have coverage for the test between now and January, but it’s not the doom and gloom exclusionary process that seemingly everyone wants to focus on when it comes to cost.

Finally, and most importantly, the notion of reducing stigma and shame by simply talking about these things – and in Jolie’s case, taking ownership of a body that has been extremely sexualized in media and popular culture – is incredibly important. In particular, even though we’ve moved society to a point where people talk about breasts and cancer together, it’s still in a “race for the cure” dialog, rather than in mastectomies and surgeries and things that shame. For example, within a day of Jolie going public about her mastectomies, Zoraida Sambolin (CNN) announced her own breast cancer and the mastectomies she’ll be having in June – and she credits Jolie for her decision to go public with her own health concerns.

This is dialog that’s important. It continues to de-stigmatize and remove shame from very basic aspects of women’s biology, and doing so is only a good thing: we need people to be able to talk openly and honestly about medical issues, illnesses, and diseases that affect women, not just men, and the sooner we can normalize aspects of the dialog that include frank discussions of biology and body parts in non-sexualized terms, the sooner we can embrace the idea that a woman – and her sexuality – is more than her breasts.

So, I was scolded this afternoon for daring to tweet about Rehtaeh Parsons’ father’s response to her suicide shortly after news broke about the Boston marathon bombing. Apparently the Internet can only care about one thing at a time, and the most important thing was the bombing and all other news, national as well as international, should stop.

Of course, tomorrow there will be another bombing somewhere else – probably not America, but does that matter? There will be another murder spree, somewhere; after all, doesn’t the FBI believe there are something like 30-odd serial killers working in America at any given time? There will be another massive traffic accident, there will be another mass casualty event, another epidemic, another something new and breaking, because in the era of 24 hour news, something is always new, something is always breaking.

So at what point, then, is it okay to make noise about the lack of investigation into a publicized, bragged about, distributed images of, rape of a teenage girl? A rape that was dismissed as a community concern, that wouldn’t be investigated or prosecuted, that led to a young woman’s death? When is it the day we get to talk about that? At what point is this violence against a woman, and the dismal response to it, allowed it’s time in the media sun?

A continued and on-going problem with violence against women is that it is de-prioritized for other news. Women, after all, are always being raped. Always being murdered. Always victims of domestic violence. The bleeding that happens simply isn’t newsworthy enough to lead; it’s too common.

And the only way that changes is to acknowledge that it is, indeed, possible to care about and advocate for and discuss multiple things at once. That a story doesn’t need to be dropped just because a new and shiny one comes along, that it is indeed possible to follow multiple ideas and have many concerns, and that in particular, news of violence and rape and suicide isn’t so low a priority that it cannot even be tweeted until a “more urgent” situation has passed. In fact, I can, as a matter of course, be incredibly worried about friends who were at the race today and yet still care deeply about the mistreatment of Rehtaeh Parsons. I have this ability, and I believe that you do, too.

I really like this post on body policing, and in particular, how people seem to feel qualified to tell someone with a chronic illness that if they just did X – largely either adopt some quack routine or exercise – that all their problems would go away. In particular, I really liked this:

You’d never run a marathon with pneumonia, but a man with CFS needs to, because expending all that additional energy will make his problems go away?

You hear someone say that their life is awful. You hear them say that they’re in pain. You hear them talk about the medications, the doctor’s appointments, the flare-ups, the feeling of never being able to escape. You hear these things and you say “laziness”, but it never occurs to you that your own illnesses- a cold, the flu- make everyday tasks difficult- difficult enough that, quite often, you will complain about being sick and sometimes even skip out on obligations so you can rest up.

You hate being sick.

Admittedly, this was already on my mind, as this morning the fiancé¹ and I were talking about some general goals and ideas of accountability, and he asked me to talk a bit more about how exercise can be a challenge with my chronic pain.² For the first time, I really had to think about the activity level that I held myself to as “the standard:” I was at one point doing yoga and pilates twice a week each; going to the gym three times a week; hiking and walking all over the University of Washington campus; and going dancing several times a week.

I’ve failed to meet anything even nearing that level of activity since I left Seattle, though, and it’s been discouraging for a number of reasons. Exercising hurts, aggravating my chronic pain. I know I need to do this, but I don’t like being in pain, so it’s a disincentive. The fiancé listened to me complain a bit, and then asked a question that led to a lot of coins dropping all at once: he asked if, after a period of time, I’d “break through” and reach a point where exercising didn’t hurt, like most folks do when they’re just getting in to shape.

And I realized that I? Do not know. Today is really the first time I put together the other half of that equation: I was able to be that active while at UW because I was on a cocktail of medication that managed and controlled my pain. While dosing and makeup varied and was continually being adjusted, during most of this period of time, I was taking: 120mg XL morphine a day; 8-10 vicodin as needed for breakthrough pain; anti-nausea medication; two different anti-depressants to help boost the effectiveness of the painkillers; and a rotating schedule of sleeping pills. Not infrequently, this would all be topped off with an anti-anxiety medication (useful for tests and doctor appointments, which were almost always full of pain). So yes, no wonder it didn’t hurt to exercise – I had done a very good job at stripping away the pain.

It’s a bit weird and a bit of a relief to see that I’m actually not a failure or weak for not being able to live up to that standard of the past; I’ve managed to largely stop taking all medications for my pain (with exception of the occasional vicodin or high dose of Advil), but this also means I need to re-evaluate what I can and cannot do, and stop holding myself to a standard that I was only able to meet due to prescribed medications.

It is a strange shift in belief and concept of self, if nothing else.

1. Oh yeah – hey, I got engaged! I guess that didn’t make it on to the blog, although it hit Twitter and I assume most of you read this from there. [↩]
2. Sappiness alert! One of the many reasons I love him: he has taken the time to ask and learn about limitations and range and how life can be impacted by living with a chronic illness, and I’ve never once felt like this was anything other than an effort to get more knowledge so that he can do his best to support and encourage me. [↩]

So, although work decided we didn’t have a full day off for Good Friday, we did have early release. And thus, I was at Trader Joe’s for my weekly shopping trip a bit earlier than usual; the crowd, instead of the normal evening mix of diversity, was mostly older folks. One of these older women was having problems reaching the top shelf to grab a bag, so I got it for her – and got profuse thanks for being helpful. And then.

Older woman: Have a blessed Easter, celebrating his risen son!
Me: *blinks* Thank you.
Older woman: What church will you be celebrating at on Sunday, dear?
Me: Ah, -
Older woman: Oh, *grabs my arm* you must come to [her house of worship]!
Me, as I extract myself from her grip: Thank you, ma’am, but I’m a practicing Buddhist. I hope you have a lovely weekend and holiday!

…and I walked off, thinking that was it. Silly, silly me.

So one of the things I bought this evening was a package of paper towels. Trader Joe’s will ring this up, then place it back in your cart – fine, I had a bag to shove it in once I was outside of the growing madhouse that was the store before Easter. The cashier was wheeling my cart around to me while I paid, when out of nowhere, the older woman I had helped and had the above conversation with, who was apparently in line behind me, reached out, stopped the cashier, and loudly said “make sure she pays for that,” tapping on the paper towels. “Her kind are thieves!”¹

I was busy seeing how far I could tilt my head to one side, so the cashier beat me to responding, calmly noting that she had rung up all of my purchases and gently pushing past the older woman – who gave me an utterly venomous look as I walked out.

Ah Jesus. You’re a relatively cool dude, but man, we need to chat about some of your followers.

* Well. Okay, there are a lot of stories about reformed thieves. And then there are some rather…special monks, in all the various lineages. But as a general rule of thumb, thievery is frowned upon.

1. I know that at least one person, who hasn’t met me or tracked down photos, is going to assume that given this response, I must be a person of color and wrongly attributing the older woman’s malice. Nope – I am a ghostly pale, blonde, green-eyed, tall Nordic woman. [↩]

We’ve all been in the situation where we do something – crash a bike, step wrong on thawing ground, trip over a damnedbeloved pet – that leaves us with a painful injury that doesn’t go away. And when that happens, we go to the doctor to verify we’re not badly injured, and possibly pick up some anti-inflammatories. For most of us, when this happens, our skin won’t slough off, we won’t end up in a burn unit for treatment, and we won’t be in a medically induced coma for months.

Most of us aren’t Karen Bartlett, who suffered a rare side effect of NSAIDs when she took sulindac: toxic epidermal necrolysis. Aside from the extreme trauma of seeing your skin shed off you like wet tissue, Ms. Bartlett suffered permanent damage to her esophagus and lungs, and was left legally blind.

Rather understandably, Ms. Bartlett sued the manufacturer of sulindac, Mutual Pharmaceutical Company, the manufacturer of the generic formulation she took. She argued the drug design was defective and dangerous, and she won both the case and the appeal. Mutual Pharmaceutical Company, apparently attempting to live up to the reputation of pharmaceutical companies everywhere, has continued to appeal the decision against them, and this month the Supreme Court of the United States will hear the case.

At crux, Mutual Pharmaceutical Company is arguing that because they have no control over the design of the drug, they are not liable for any injuries sustained from taking it; they say this is the same as a recent SCOTUS ruling that does not allow patients to sue generic manufacturers for warning labels, as the company has no control over that information.

The problem I have with this argument is that we know that this is patently false. In October of 2012, the FDA removed approval of Budeprion XL 300, a generic version of Wellbutrin XL 300 manufactured by Impax and marketed by Teva. Why? Because their formulation was not therapeutically equivalent, and likely never had been.

The Impax/Teva Budeprion XL 300 was approved in December 2006; given that 80% of prescriptions filled in the United States are generic, it’s safe to say that quite a few generic prescriptions for Wellbutrin XL 300 were filled in that time. Almost immediately, the FDA began receiving reports that the generic form of the drug was not therapeutically equivalent; patients experienced reduced efficacy. Reduced efficacy is a polite way of saying that patients, many of whom were severely depressed, weren’t receiving any benefit from taking the drug, something I think we would all agree is a harm. And yet patients were taking this ineffective drug for six years, because the FDA was unable to quickly move to investigate the bioequivalence of Budeprion XL 300 to Wellbutri XL 300.

Clearly, generic manufacturers have the ability to change formulations, whether they should or it’s legal aside.

Generic manufacturers say that allowing juries to award damages to patients harmed by generics trumps the authority of the FDA, and the FDA is grudgingly siding with manufacturers on this. The problem here is that this argument presumes two things:

1. that the FDA always has all information regarding a pharmaceutical, something that Vioxx alone clearly indicates isn’t true;¹
2. that the FDA has the ability to move quickly to protect patients, something the Budeprion XL 300 example shows is not the case.

Lawsuits are one of the few ways it seems that patients have any ability to advocate for themselves – and, as Ms. Bartlett’s lawyer notes, force pharmaceutical companies to reveal information that they often take effort to squelch. Hopefully SCOTUS recognizes both the limitations of the FDA and the need to give patients a venue wherein they can hold manufacturers accountable for damages inflicted by the product they produce.

1. If you want to read more about pharma behaving badly, hiding clinical trial results, etc, check out Carl Elliott’s White Coat Black Hat and Ben Goldacre’s Bad Pharma. [↩]