Wednesday, January 2, 2013

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.


Thursday, December 13, 2012

Matters of Life and Death

Those of us with systemic autoimmune arthritis often hear that we are "too young" for arthritis, though we know we are not. If we spoke openly about our health conditions, we would also probably hear frequently how we are "too young" to die. But the truth is that we're not too young for that either.

In the past week I've seen several news stories about the death of 23-year old Sasha McHale, daughter of former Minnesota Timberwolves coach Tom McHale, from lupus-related complications. Then, just in the last few days, I found out that Laura, of the blog Still's Life, has died of complications from Still's disease (Juvenille Idiopathic Arthritis). I did not know Sasha, and I wasn't close to Laura, though I knew her through the twitter #rheum community, so I don't want to claim that I have any stake in grieving for these two women, except in the way that anyone must grieve for an individual whose life ends just as it should be beginning. And for that I do grieve, as I did for Simone Watson, an Atlanta college student who died from lupus complications just days before her graduation with a dual bachelors/masters degree last spring.

I find myself combing the news articles and memorial posts, trying to figure out what lies beneath the opaque phrase "complications from lupus" or "complications from autoimmune disease." Did they know this was the end? Or did it come as a surprise to them, as it did to us? I wonder how hard I should be pushing myself, how much time I have left, whether pushing too hard—for my career, for my scholarship—means less time to be in this world that I love with the people I love. I wonder what it is I can offer in return, to make sense of such senseless loss. I'm not afraid of death, but I'm not ready to be done here. Not by far. And I can't know, but I suspect Sasha, Simone, and Laura weren't either.

Friday, November 9, 2012

Running interference

When you spend a lot of time trying to talk your body out of being in pain—or ignoring the pain as best as you can—eventually you reach a point where you stop being able to distinguish your body's basic pleas for attention. You start to get angry or frustrated or tearful and you can't tell why. Some minor task goes awry and you become infuriated. You ask yourself, "Am I hungry?—because I don't feel particularly hungry..." but you eat something anyway. Or "Am I thirsty? I don't think I'm thirsty, but I guess I'll drink some water." And then "Am I tired? Because I don't feel any more tired than usual. Do I need a nap?" And then you notice the throbbing in your hands—or your feet, or your knees, or your head—and realize, "Oh, right, I'm in pain. Still. Again."

Tuesday, November 6, 2012

Political Thoughts

Does this mean I get to keep my Obamacare? It may not be the best, and the healthcare system still needs a lot of work, but it may mean the difference between permanent disability and treatment for me, and for that I'm grateful.

Wednesday, October 24, 2012

Conundrum

The problem with having two (or more) autoimmune conditions is that the treatments for one can exacerbate the other. I have failed Arava (or, more truthfully, Arava has failed me). Now the only option left before going to biologics (which my insurance will only partly cover, plus they have a fail-first policy, hence the endless wait) is sulfasalazine, which may resolve my GI issues and RA symptoms, but could potentially make my lupus symptoms much worse. At this rate, I almost feel like prednisone is easier and safer. What a mess. And why do I still feel like it's my fault that the treatments don't work instead of the other way around?

Sunday, October 14, 2012

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.

Monday, August 27, 2012

Changing Aspirations, Fitness, and RA/Lupus Fatigue

This morning, Gretchen Rubin, author of The Happiness Project, posted the following question on her Facebook feed:
Happiness Question: Do you consider exercise to be a treat or a chore?
While I might have considered exercise a chore in my life before my Lupus/RA diagnosis, it is now definitely a treat. While once-upon-a-time my aspirational images came from glossy fashion magazines, I now gaze longingly at the running, stretching, dancing, and climbing women in magazines like Self and Women's Fitness (the same smiling women who can be out in the sun without a hat, long pants, and long sleeves). I flip through the Athleta catalogue, mourning the days when I had enough energy to run 12 miles and go to three yoga or dance classes in a week-- which is to say, meet the guidelines for 30-60 minutes of exercise per day. I have the schedule for my local dance studio open in my browser, just on the off chance I feel up to a yoga or ballet class (this actually happens about once every six months.). I'm lucky that I haven't gained more than a couple of pounds on prednisone, but that doesn't stop me from grieving from the active, capable body I used to have.

Those of you who have been following this blog for a while may remember my cranky response to a small study on exercise and RA patients that received a lot of media attention last winter. The conclusions of the study authors seemed to suggest that RA patients as a whole were less active than the general population, and that this was the result of their attitudes and beliefs about the benefits of exercise, not their pain level or ability to exercise. The mainstream media took these conclusions and ran with them, trumpeting headlines like "2 in 5 RA Patients Sedentary." This is, in my opinion, a gross oversimplification of some complex findings. One, RA patients, when grouped by age, are only slightly less active than the general population. Two, the findings in the study are skewed by a large number of older patients, a population that a) tends to be less active in general; and b) includes many individuals who received an RA diagnosis during the 1980s (or earlier), when the general consensus in the medical community was that exercise was more harmful than beneficial to joints affected by RA. So rather than trying to shame all RA patients into more exercise, which downplays the fact the many RA patients continue to deal with pain and  fatigue, even once they reach so-called "clinical remission," I think the study suggests that older RA patients need outreach to encourage them to be more active. The rest of us who want to exercise and can't? I don't know what the solution is, except better treatment options and access to those treatments, less reliance on broad-spectrum immunosupressive drugs like methotrexate that sap energy, and more access to gentle exercise modalities like swimming and tai chi.

I've always been an active person, if not an intensely athletic one. I played soccer as a child until I was sidelined by arthritis in my ankles and knees in my teens. I continued to dance, on and off, into my late 20s, and I took up running and hot yoga during a particularly energetic period in my mid-20s. But now fitting in exercise requires a complex balancing of my time and energy. In order to find the energy to spend 30 minutes on the elliptical machine or in the pool at the gym, or attend a gentle yoga class, I have to take into consideration that it will probably sap the rest of my physical energy for the day. I weigh questions like "If I go to the gym, will I have the energy to prepare myself food, or catch up on housework when I get home?" "Will the benefits outweigh the inevitable pain?" Most days the answer is no, and I must prioritize my basic needs above exercise, which has become a luxury. (I have begun to count "doing laundry" as a form of exercise—there are two flights of stairs involved). While I have had peaks and valleys of energy during the past two years, my average leans more toward "fatigue". I hope some day I will find a treatment that allows me to return to the realm of the athletic. In the meantime I eat well, but I wear my yoga pants at home and gaze longingly at the Athleta catalogue from the couch.

How do you stay fit with chronic illness?