A few weeks ago I dreamed that I saw my former rheumatologist, the one who passed away suddenly during the fall. In my dream, he told me to take a vitamin E supplement. I woke up surprised by the clarity of the dream, as well as the normalcy of our interaction. It was as though I had simply returned for a follow-up appointment. I immediately googled “vitamin e lupus” and discovered this study from 2007, which suggests that vitamin E supplementation helps to suppress autoantibody production in lupus patients. (And animal models suggest that vitamin E reduces joint destruction in RA-like diseases.) To say I was surprised by both the dream and the research it inspired is an extraordinary understatement. The whole thing still takes my breath away. Needless to say, I’ve added vitamin E to my daily regimen!
In my waking life, I have been haunted by the parting exchange between my doctor and me during my last appointment. As I was checking out at the front desk and preparing the leave the office, he called out my name and when I turned around, he was studying me with a look of both sadness and compassion. He said “We’ll figure this out.” I must have replied with something in the affirmative and continued toward the door. I turned back one more time as I walked through the door to the waiting area, and he was still watching me, the same look on his face. I remember feeling simultaneously troubled and reassured at the time—like he knew something and wasn’t telling me, but that he truly cared about me. The fact that it was the last time I saw him only adds to the mystery of the exchange. I requested a copy of my notes from his office, to give to my new rheumy, but apart from the blood order and diagnosis codes, there are no notes from my final visit with him.
In the last few weeks, I have been in the process of interviewing for a temporary administrative position at my university— one with more flexibility and more benefits, but also more hours than my current position. On the one hand, it would be an excellent move, career-wise, and it would also be an improved work environment. On the other hand, while I was excited about the position, I was also concerned about my ability to work a full 40 hour week, even if some of that time was spent working from home.
Well, it seems that the universe was keyed into my ambivalence, because I found out on Tuesday that the position won’t be full time after all, and that the length of the commitment would be significantly shorter than expected, at least for now. Though this is disappointing for financial reasons, it has allayed my fears about potentially over-extending myself. I will also have time to work with gifted kids again this summer, teaching creative writing, which I realized in retrospect I had been sad about giving up. So all is right with the world again. Now let’s hope I can keep my disease activity stable enough to enjoy it!
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?
This post was written for the current PFAM blog carnival, hosted this round by Sharon at Bed, Body, and Beyond.
I have been avoiding writing this post. No, scratch that, I have been avoiding writing. Period. I could say this is because it’s the end of the semester, that I’m busy with teaching and editing and advising. I could say that I’ve been busy preparing for the holidays, that I haven’t been home much. But none of that would be entirely true.
I have a Flannery O’Connor quote in my profile that reads “I write to discover what I know.” And right now? I’m avoiding writing because I’m afraid to face what I already know. I never wanted this blog to be only a place for me to whine and complain, and I feel like lately that’s all I’ve been thinking about. I’ve been moping about all the things that illness has taken from me. Because the truth is that despite a few good days, the past month has been immeasurably difficult. And part of the difficulty comes from the fact that I persist in the charade that I am still as able-bodied as I ever was. When I’m not.
As the holidays approach, I can’t help but think about all the things I used to do that I can’t do right now: crochet and knit, hand-make holiday cards, roll out cookies and pie crusts, stand in the kitchen cooking and baking all day, making preserves and candy and sauces to give to friends and family as gifts. I have always shown my love with the work of my hands. I hope that there will be a day in the future when I can do all these things again. But I don’t know that. Because my desire to do those things can only take me as far as my body’s new limitations. And to be truthful I feel physically worse right now than I have in a long time. I’m frustrated, I’m sad, and I’m struggling to be hopeful. I knew all that already, but it still stings when I type it out in the little Blogger “new post” window.
I’m not very good at asking for emotional support when I need it. I don’t like to be seen as needy, or melodramatic, or weak, and so it’s hard for me to reach out. I suppose this blog is my tiny way of reaching out. Extending my life and my empathy in the hope of multiplying the amount of care I am capable of both receiving and giving.
Tomorrow I see a new rheumatologist and continue this convoluted journey of diagnosis and treatment. And I will continue to write about it. Even if my insights about myself and my life sometimes sting. Because ultimately I write for you: young, old, newly diagnosed, undiagnosed, long-diagnosed, wise, innocent, happy, sad, hopeful, disabled, able-bodied, brilliant, contemplative, compassionate you. Thank you for being my reader. You help me to know my self and the world.
No matter what these illnesses take from me, they will not take my ability to think and create in some form. No matter how fast—or slow—I type, it’s still always one letter at a time.