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?
|“Janus” (oil on panel) by Mary Jean Ansell|
My hands are back. In all their crocheting, jewelry-making, baking, yoga-doing glory.
The dark cloud of MTX has lifted from my whole life—along with the wolf that gnaws on the joints in my fingers, wrists, and elsewhere.
I know prednisone isn’t a long-term solution, but for now, it’s given me a facsimile of my old life back.
And for that I’m thankful.
Several of my good friends are firm believers in free market economics. They argue that regulation gets in the way of supply and demand, and that the market will find its own equilibrium (i.e. “balance” or “correct” itself) without the interference of regulators. I have gotten into some very heated arguments about the regulation of healthcare and drug companies because I don’t believe that these industries can be treated in the same way as other sectors of the market. I’m not going to address the issue of the regulation of healthcare/insurance right now because the scope of that argument is way beyond a single blog post. What I do want to point out, however, is the necessity of proper regulation of the companies that manufacture medications.
Prescription medicines cannot be a free market. Why? Because consumers have neither director control nor significant choice when it comes to the medicines they are prescribed. Certainly we can ask our doctor to prescribe a less-expensive alternative (when one exists) or choose not to treat a given condition or illness, and we have a choice about where to get our prescriptions filled. But in many cases there will be a single drug—or set of drugs—that provide ideal treatment for us. Sometimes the ideal drug will be incredibly expensive (see: Biologics) due to the research and clinical trials that were necessary to bring the drug to market. Other times the ideal drug will be extremely inexpensive (see: Prednisone, generic tricyclic-antidepressants, etc) because it is off-patent and inexpensive to produce.
My health insurance has a $1500 annual prescription limit, so I’m lucky that the vast majority of medications I’m currently taking fall into the latter category. (And no, I do not have a “choice” to purchase a different plan from my employer, nor can I afford to purchase another kind of private insurance). But it means that my doctor and I must be strategic about the drugs we choose, and that when/if she decides that a biological medication like Enbrel, Rituxan, or Benlysta is necessary for my treatment, I will need to seek financial assistance from an outside entity like a charity or from the individual drug company that produces and distributes the medication. It is up to me to know what drugs are covered, what drugs are not covered, and how I am going to distribute my annual benefit.
|generic MTX vial|
Yet sometimes something goes terribly awry, usually at the level of manufacturing, and suddenly a drug which previously fell into the “generic” and “inexpensive” categories becomes a hot commodity. Right now that’s the case with my old nemesis methotrexate. This article from the New York Times outlines the current situation, focusing on methotrexate’s utility as a life-saving treatment for childhood cancer, though the drug is also widely prescribed for a broad range of autoimmune conditions. The problem, as I see it, is that there is little profit to be made on a drug like generic MTX, so when one manufacturer (out of five) has to recall a drug because of a manufacturing issue (like, “Ooops, we found a bunch of glass shards in a whole batch…“), there’s no [financial] incentive for the other four manufacturers to pick up the slack, even if by doing so they will potentially be saving lives.
A situation like this also raises the issue of who should be in charge of making sure the company is using the correct manufacturing techniques and properly inspecting the finished product so consumers aren’t harmed. The free market economist might argue that the demand and supply would be enough, but I disagree—particularly because consumers rarely have a choice in which manufacturer their generic drug comes from, nor do pharmacies make this information readily available. Unless an agency like the FDA steps in, there is no reason for the companies not to choose the most inexpensive manufacturing process, even if it means a minor decrease in quality, and make those products available for sale. In this case, harm to individuals becomes a number, a probability, a risk-benefit analysis that is disconnected from the experience of actual human beings.
So then the drug goes on the grey market, and people are suddenly paying 80 times more for the drug than they normally would. Ultimately this brings me back to what I see as the key ethical question at the heart of debates about healthcare: Should access to treatment be tied to one’s income and economic power? Or do all people deserve access to life-saving drugs and medical procedures, regardless of income? Should drug companies be driven by profit? There are those who argue that the only way new drugs will be developed is if there’s the possibility for major profit once the drug is released. That strikes me as a chilling state of affairs.
So, methotrexate and I broke up last week. During the past two-to-three weeks I’ve been having a major flare of skin and joint involvement and my rheumy and I decided we needed a different strategy. Of course, my labs are still somewhat (totally?) incoherent, so the strategy is “dampen the inflammation with low-dose prednisone and NSAIDs and see what develops.” So no more needles (for now), no more weekend-long MTX hangovers, no more collapsing into bed at 7pm, and no more disgusting cherry cough syrup (to fight MTX brain fog). I feel like a human being again. A human being whose feet and hands have returned almost to their normal size. Of course that’s probably just the prednisone talking, but I’m so excited to feel like myself again that I’m willing to take whatever I can get.
I know all about the downsides of long-term use of corticosteroids—osteoporosis, elevated blood sugar and diabetes, glaucoma, etc—so I’m hoping we can find a better [biologic?] solution for my situation. In the meantime, though, I’m beginning to find my way into a quality-of-life balance. Sure, the MTX might be safer in the long run, but what good is it if the side effects are totally disabling and it’s only partially controlling my disease? Is it better to be on MTX and be unable to exercise due to fatigue than to be on prednisone and have the energy for moderate physical activities? Which is better or worse for my heart, my lungs, my brain, my soul?
I’ve always been a planner—I like to joke that I have a back-up plan and a back-up-back-up plan for my Plan B—but sometimes I simply have to ask myself “what do I need to function (and even enjoy myself) right now?” Because right now is the only guarantee. I gave MTX 4 months of my life and I’ll never get them back. It was worth the gamble, since it could have been a miracle drug for me, but it wasn’t. Next!
“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom” —Victor Frankl
I’m not sure what has changed in the past few days, but I feel like I’ve gone from a mental space of worry to one of relative peacefulness and acceptance. It doesn’t feel like anything has changed inside of me; in fact, I feel just as lousy as I did last week—the usual MTX gripes and joint pain along with a bonus infection. But something has definitely shifted.