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.
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?
“The wolf, I’m afraid, is inside tearing up the place.” —Flannery O’Connor (from a 1964 letter)
So after about five magical weeks of feeling like my functional pre-MTX (but not necessarily pre-lupus) self, the fatigue has descended again. I’m sure the time change is part of it, but I could feel the creep of the fatigue all last week. I wrote it off as lack of sleep and excitement/stress from starting my new job, but now the gnawing has started up in my wrists, and I know it’s the inflammation stirring again. (Wren calls the pain of RA her “rheuma-dragon,” but I think of my joint pain as the arthritis wolf. I’m sure that’s partly the power of suggestion—”lupus” = “wolf”— but it’s just such a gnawing pain that I can’t imagine it being anything else. And we still don’t know for sure whether it’s lupus, RA, or both.)It’s hard to give myself permission to be tired, to say to myself: “Rest! Your body is telling you that you need to take care of yourself!” rather than to chide myself for being lazy. Because it’s always possible to push a little further, force myself to go a little bit longer, forego more sleep than is comfortable (carry one more load of laundry or recycling up and down the stairs…). But eventually I crash, and then what do I have? Well, I morph from chronically ill to acutely and chronically ill. And that helps no one.At my last appointment with my rheumy she asked me to try to wean myself off my ibuprofen habit, and we also increased my Plaquenil dose to 600mg (visual field test here I come). I tried—and succeeded!—to reduce the ibuprofen, but in the past couple of days I’ve been in the kind of pain that just laughs in the face of Tylenol and Tramadol, so I’ve had to undo all the careful calibrations I made last week. Back on the NSAID train. One step forward, two steps back.Now where have I put all my spoons? I need one for my writing, one for my Wednesday swim, one for each day in the office, and about fifteen for the friends who are coming to stay with me this weekend…
I’m not lazy, I’m sick. And I’m doing the very best that I can. It feels pretty heroic from my vantage point.
|“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.
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!