On Being a Zebra (or why Occam’s razor doesn’t always work)
Among competing hypotheses, the one with the fewest assumptions should be selected. (Occam’s razor) “Whenever an affirmative proposition is apt to be verified for actually existing things, if two things, howsoever they are present according to arrangement and duration, cannot suffice for the verification of the proposition while another thing is lacking, then one must posit that other thing.” (Chatton’s “anti-razor”) “Patients can have as many diseases as they damn well please.” (Harrum’s Dictum)
This is Zoe. She’s a rare “Golden Zebra.”
Medicine has its own little collection of aphorisms–pithy sayings that often get trotted out to try to explain or discount patient behavior. These aren’t limited to variations on Occam’s razor, but they often work to suggest that the simplest explanation is best. On more than one occasion, I have been subjected to a paraphrase of Dr. Theodore Woodward’s directive: “When you hear hoofbeats, think of horses not zebras.” This is generally taken to mean that the physician should consider the most common diagnosis first, rather than an exotic one. I suppose this is good advice for the medical intern, or the harried ER doctor, but what happens when it is a zebra, and not a horse? Or two zebras? Or a herd full of zebras? Or an albino zebra?
All of this is on my mind today because I saw my rheumatologist earlier this morning to discuss my unsuccessful attempts at tapering off of prednisone. I had hoped Kineret would be my magic bullet– and it has been for my inflammatory arthritis (which meets the diagnostic criteria for RA, but is likely a variation of TRAPS and/or AOSD). However, as it turns out, lupus is still lurking in the shadows, and was all too happy to make an appearance once the prednisone shield came down. So back up the prednisone dosage goes.
At this point, I wish I were better at grappling with uncertainty. If nothing else, chronic illness forces you to relinquish the illusion that having a diagnosis is an end point. It’s really just the beginning, and always subject to revision. As my doctor said today, my symptoms could be entirely different in five years. So I do my best to focus on now, and on what will allow me to have the best quality of life–to flourish–now. If it means prednisone today, it means prednisone today. Maybe later it will mean Imuran, CellCept, or Benlysta. Maybe research into autoimmune and autoinflammatory diseases will reveal new causes and new treatments and I will end up with an entirely different diagnosis altogether.
It’s so easy to be discouraged, but then I think back to how miserable I felt when I was first diagnosed, then when I was on methotrexate and Arava with the added trauma of losing half my hair (and sometimes what felt like half my mind), and it’s easier to see how far I’ve come. A few milligrams of prednisone isn’t the end of the world. Diagnoses are a means to an end. It doesn’t “please” me to have more than one rare disease, but if I’m a zebra, I’m a zebra. I didn’t choose to be the exotic one, but really, who would choose to be a horse when you could be a zebra instead?
Un-resolutions and Some Thoughts About Food
Those of you who have been following this blog for a while may remember my post about not making New Years resolutions last year. While I haven’t really made any resolutions for this year, except to continue my (un-)resolution from last year of being kinder to myself, I have spent the past few months thinking a lot about food, and sugar in particular. I read Gary Taubes’ Why We Get Fat a few months ago, and it’s really changed my thinking about nutrition. I’m going on vacation next week, and plan to be as indulgent as I like because, hey, it’s vacation! But when I get back, I’m thinking about making some significant changes to my diet, though not for the reasons you might expect.
Pretending to be normal
As you may have noticed, I haven’t posted in a while. Mostly I’ve just been busy—working, teaching, writing my dissertation, and trying to having something of a social life. Basically I’ve been playing at being a normal person. And I did a pretty good job at it, too. This weekend though, all the small complaints that I had been collecting over the past few weeks (feet too sore to wear heels, intense morning stiffness, knee pain, fatigue, photosensitivity, GI issues) seemed to snowball together, and now I’m lying on the couch feeling sorry for myself. I like to think I’m getting better at not blaming myself and riding the wave of flare and remission, but it’s still really hard. Sometimes I feel like as soon as I get everything under control and establish a routine, something new pops up to wipe me out again.
Between the Arava and inflammation I’ve lost more than 10 pounds since August, despite still being on a low-moderate dose of prednisone. While for many people that would be a victory, for me it isn’t—I’m already at the low end of normal BMI. The GI symptoms I’ve had recently, which may or may not be from the Arava, have not helped either. I’ve been tracking my stress levels and watching the foods I eat, cutting out wheat and dairy, but it just seems to be totally random and unpredictable. I’d like to exercise too, but I don’t have the energy (yes, that old chestnut). And it’s hard for me to take the compliment when people tell me how good I look, since I feel so unwell and unfit inside. I suppose I should be pleased that my make-up skills are good enough that I don’t look like death warmed over.
All this makes it sound terrible to be me, but that isn’t really the case. I’m just frustrated with my body. I really am grateful and content most of the time. I have lots of love in my life and people who are looking out for me; I have a job that I find satisfying and fulfilling; I have my academic work—which I love, even if academia makes me a little crazy sometimes; I’m financially stable and I have decent health insurance, though I often have to fight to get what I need; and I have various volunteer and social commitments that keep me engaged in my community when I’m able. It’s a good life, even if it’s not the one I thought I was going to have.