Physical pain does not simply resist language, but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.
—Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (4).
In many ways I’ve had a good week—I received great feedback on my research and teaching, spent quality time with friends, prepared for the holidays, reconnected with loved ones who live far away, attended an engagement party for a dear friend, and welcomed a new baby into my extended family. But I’ve also had one of the most painful weeks on record since last May (= the vasculitis debacle). And everything fades into a sort of dull background when my mind and body are so exhausted by managing the pain.
It’s been a week now since I took my first dose of injectable MTX (I took my second dose last night) and unfortunately, for the past week I’ve had an intense flare of joint pain, swelling, and general exhaustion (and possibly kidney involvement? 5+ lbs of water weight gain suggests “yes,” but it’s hard to tell). I don’t know if there’s a causal relationship between the MTX and the flare. I would like there to be, but I doubt it. Likely the flare is the result of the stress of the end of the semester and the beginning of the holidays combined with massive weather fluctuations and the generally unpredictable nature of flares.
I wish I had some easily controllable catalyst I could pin the cause of my flares to—sugar, caffeine, alcohol, lack of leafy greens, too much meat, nightshade vegetables, too little sleep, etc—but sadly, that doesn’t seem to be the way my illness works. (Plus, I’ve cut or severely limited most of the items on the preceding list anyway. I’m the healthiest sick persion I know. The baking I tried to do last week seems a much more plausible cause.) But I’m not feeling particularly hopeful that the injectable MTX is going to be any more helpful than the oral. On the other hand, being on the MTX this fall has made my seasonal allergies almost invisible, so at least it’s having something of an impact on my overvigilant immune system. But I’m so tired of waiting for something to control my arthritis!
I’ve had a lot of friends ask how I’m doing in the past few days, and it’s hard to know what to say. I usually go for my default response when someone is genuinely concerned (and not just offering a polite, social-lubricant “How have you been?”): “It’s been a rough week.” Often, they assume I’m talking about work, not about my health, and I usually let them persist in that assumption. Because once we get past those opening lines, I’m never sure where to go next. I know that we all struggle to describe the pain we experience—I see it come up over and over again on the blogs I read and with my friends and acquaintances on Twitter. We tell people we’re in pain, but they just don’t get it.
I even struggle to explain to my doctors the kind of pain I’m experiencing. I realize, in hindsight, that my explanation of “everything hurts,” while literally true, did nothing to assist in the diagnosis of a connective tissue disease. Doctors hear “everything hurts” and they think fibromyalgia (or CFIDS/ME, and/or depression). And while many of us have coincident fibro to go with our other rheumatic diagnoses, it’s my experience that a primary fibro diagnosis will prevent other doctors, even rheumatologists, from looking for additional causes for joint pain and fatigue. (Not that I’m bitter that it took anyone years to test my ANA and CRP. Nooo, not me.) So I’ve become very conscious of differentiating between “all over” diffuse pain and the distinct, precise pain of specific joint inflammation, even if those joints are seemingly “all over.” (Which they were this week. Even my jaw, which was a new one for me and oh my f—king goodness did it hurt.)
But what, exactly, does the joint pain feel like? When I try to describe it, I lapse into bad analogies and similes, the kind or purple prose I ask my students not to use in their essays:
I wish I could say that these are simply the creative inventions of a poet, which I suppose they are, since I am a writer of poetry, but they are also the closest I can come in language to describe the pain I experience on a regular basis.
And when the pain becomes more than I can bear, it’s like my brain places a sheer curtain or a piece of frosted glass between me and my body— really between me and all my perceptions of the world. The pain becomes more diffuse and manageable, but all sensation and thought becomes cloudy, dampened, and difficult to sustain. Periodically the specific pain of individual joints breaks through, and I become both distracted and distraught. After several days (or weeks) of this, I’m an emotional wreck. So much of my energy is expended trying to manage and ignore the pain that I cannot focus on anything else, and little annoyances become insurmountable obstacles. Painkillers dull but do not silence the pain and bring their own set of annoyances and side effects.
How do you describe the pain of your arthritis or chronic illness? Do you even try?
“But the beginning of things, of a world especially, is necessarily vague, tangled, chaotic, and exceedingly disturbing. How few of us ever emerge from such beginning! How many souls perish in its tumult!”
Sometimes you think you have everything figured out. You’ve found the key that unlocks the door and everything will be revealed. Except life so rarely works like that. Every ending is a beginning. Every solution is simply the beginning of another question. The wheel of fortune just keeps spinning. And I don’t mean the one that involves earning money by spelling words correctly, I mean the one that came before, literally “Fortuna’s Wheel,” depicted to the left. Welcome to the spinning wheel of life with autoimmune disease, where no spot on the wheel will get you a new car or a vacation to Hawaii, but it might get you back to where you started in the first place.
Several weeks ago I wrote about my most recent visit to the rheumatologist. He reviewed my bloodwork and asked how I was feeling. I had to answer honestly that my joints were killing me, especially my hands + wrists and feet + ankles. He took a look at them and said we needed to do more, that the Plaquenil was helping my other symptoms, but that if I was relying on the ibuprofen for my joints, I was just masking the inflammation and not altering the course of “the disease.” Of course, the problem in my case is that we don’t know exactly which disease entity we’re working with. (Still. Yet. Again. Have I mentioned I have trouble with labels? I have trouble with labels.) So “the disease” can’t really be pinned down. My symptoms (vascular and skin-related) last winter and my initial response to Plaquenil (also called hydroxychloroquine or HCQ) and prednisone, plus my negative Rheumatoid Factor (RF) suggested lupus. But after seeing the sad state of my joints as of a month ago, rheumatoid arthritis is back on the table. Are we looking at rhupus? MCTD? One of the spondylopathies? I still don’t know.
First, a little history. My understanding is that my grandmother—who died in 2002— had some form of what might now be diagnosed as Mixed Connective Tissue Disease (MCTD). She was originally diagnosed with “arthritis,” though how long ago, I’m not sure. Later, scleroderma was added, and I’m honestly not sure if there were other autoimmune issues at play. The scleroderma presented primarily as CREST, affecting her skin, GI system, and causing Raynaud’s. As a child, we were very close and I always loved going over to her house. Some nights I would sleep over so my parents could go out, and she and I would stay up late, playing cards and eating cookies.
She had all sorts of wonderful “devices” in her house that made things easier, even things like playing cards. There was an automatic card shuffler and wooden boards with horizontal grooves in them to hold a handful of cards without showing them to your opponent. She also had Tupperware that you could seal by pressing the center of the lid with your elbow and little squishy rubber things to make gripping a pencil easier. Not realizing that she had autoimmune disease, and not your standard run-of-the-mill Osteoarthritis, and that she probably couldn’t have shuffled a deck of cards or closed a Tupperware lid with her fingers alone, I just assumed these were fun gadgets. After all, I sometimes had trouble getting Tupperware containers to “seal,” and shuffling cards was endlessly complex for my 6- or 7-year-old-hands. I even assumed her hands, disfigured by the classic signs of inflammatory arthritis—ulnar drift, boutonniere deformities, swans necks—and the shiny skin of scleroderma, were what the hands of all “old people” eventually looked like. My father even tried to scare me out of cracking my knuckles by telling me I’d end up with hands like my grandmother’s. I know now that this is impossible, and yet I—so vain about my long slender fingers and pale skin—may end up with her hands regardless.
I don’t think anyone expected my grandmother to live as long as she did. I’m not sure they thought she would live past her 60s, and yet she lived well into her 80s. But the effects of her disease(s) and treatments took a terrible toll on her body. Everything from her teeth to her skin to her esophagus to her kidneys (and who knows what else) were slowly destroyed. It was only when I was older that I really began to understand all that she’d been through, working full time as a nurse while my grandfather fought in WWII. And that she’d continued to work after the war, mostly for economic reasons, but still an unusual choice during that era. I wish I’d been able to ask her about her diagnosis, the pain she dealt with, how her doctors treated her. Everyone says we like alike, in looks and in our stubbornness and tenacity. People have even assumed that photos from her teens and 20s are actually black and white photos of me. I just never realized until now how alike we really are. And I wish I still had her here. Because I’m scared, and I need her to assure me that I’m going to be OK, that life goes on, and that it can still be rich and beautiful and fulfilling and full of love, no matter which box gets checked, no matter what diagnosis code is written next to my name.
This entry was featured on the Patients for a Moment Blog Carnival: Revenge of the Conquered, or is it Avenge of the Conquered?