Working on it, Part 2

This morning I was reading ­­­a long and fascinating article in the New York Times, How Psychedelic Drugs Can Help Patients Face Death, by Lauren Slater. As I read, I began to compare the fear that patients with terminal illnesses have of their impending deaths and how I feel these days about my rheumatoid arthritis. No, rheuma pain doesn’t begin to measure up to actually dying. I don’t mean to trivialize the concept. But as I read, my recent, distinct dis-ease with my own RA joint and bursitis pain suddenly clarified: I fear the return of the much worse, frequently disabling and mind-jarring pain I lived with during the first 10 years following my diagnosis. It tints my every waking moment with niggling worry.

Fear. defines it as “a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined …” That’s clear enough. I’m experiencing that “distressing emotion” far more often than seems healthy.

Really, there’s nothing wrong with being afraid. Without fear, humankind wouldn’t have survived and I sure wouldn’t be around to write this today.  It’s fear that compels us—involuntarily, more often than not—to run to safety, to take shelter. Fear compels us to be cautious. It urges us to prepare against future threats by creating safe havens or, perhaps, by arming ourselves in one way or another. And if we’re cornered, fear for our very lives can compel us to turn and fight savagely. It’s a useful, efficient, even life-saving emotion.

But fear does have its downsides, too. I live in constant fear of my returning rheuma pain. Every movement of my fingers reminds me I have the disease with small tweaks and larger, sharp stabs. Underneath those lays the mean, low, throbbing ache. Dealing with it—okay, trying to ignore it—can be exhausting all by itself. “Don’t dwell on it!” I mentally shout at myself. “Just move on!” And indeed, I do. I lift the coffeepot with both hands, the left protected with a potholder. I made a loop with a dish-towel and hung it on the refrigerator handle so I can slip my forearm through it and pull the door open that way, instead of with my hand. I’ve gotten so that I pause to think, even if it’s just a moment, before I do anything. Don’t dwell? Please.

To keep the pain tamped down and tolerable—so I can get on with the rest of my life—I take prescription painkillers. But even as I swallow them my mind flashes ahead involuntarily to wonder—fearfully—how I’ll manage when this current pain gets even worst and my painkillers don’t keep it under control anymore. I’m acutely aware that the drugs will lose more and more of their efficacy as my brain learns to override them. And even as I worry, I remind myself that I should be grateful for that. My pain has an ancient, instinctual, vital purpose: to help me survive. If these drugs totally masked it, I’d be in far worse shape than I am.

It’s funny. My family thinks I’m like old shoe-leather, scuffed but tough. Mom tells me about once a week that she doesn’t know how I do it, staying active and cheerful each day when I’m struggling with so much pain. I tell her I’m not really all that tough. If I didn’t have my pain meds I’d be whimpering damply and surely disabled to uselessness nearly every day. She frowns. She asks why “they”—my rheumatologist, actually—don’t give me medicines that work better. So I explain, once again, that “they’re” doing everything “they” can. That RA is incurable, and how our bodies learn to get around the various meds over and over again, always pushing us back to square one. “Well, you’re sure stronger than I am,” she says finally. “I don’t know how you do it.”

I smile and remind her just who my mother is, and how tough she’s always been. The branch doesn’t fall far from the tree.

Back to the point, though. I’m afraid  of the rheuma and I’m afraid that my fear is beginning to disable me as much as the rheuma itself does. It keeps me cowering in place, too fearful to upset the status quo.

See, my pain ramped up so much after I started working out at the gym in February that now I’m afraid to go back for fear of making it even worse. But I’m also afraid (sigh) that I’m deceiving myself. My health depends on exercise. I need it.

It’s beneficial and, I’m beginning to understand, it’s as vital as eating, sleeping and breathing. It will strengthen my muscles so they can better support my joints. It helps my body to shore up and rebuild the bone that the osteoporosis is so busily undermining. Exercise burns a few calories, which can only be beneficial considering that I can’t seem to find the courage to give up peanut butter on my toast each morning. It increases my lung capacity and toughens my heart. It burns unneeded fat. It gets me out of my normal routine for an hour or so and puts me in contact with people outside my immediate family. At the gym, my fellow exercisers feel like a community, even if it’s a small one.

I need to overcome this creeping fear for all those reasons. But just as important, I need to overcome my fear of rheumatoid arthritis and the increased pain and disability it threatens me with. Those, I think, may be my lot no matter what I do, so it can only be to my advantage to face the future with a healthier body and mind.

Now I just need to figure out how. I’m still working on it.

Working on it

I’m tired of having only negative things to say when I post to RheumaBlog. After all, there are lots of positive things that happen in my life every day; it’s not all doom and gloom. But the fact is that I wake up each morning stiff as a corpse. The first hour of each day aches, literally; the dose of painkiller that I took before retiring the night before has worn off completely. The new, first-thing-in-the-morning dose takes about an hour to work. My creaky joints loosen up some. Even then, the pain isn’t gone. The drug dulls it and sends it into the background, but it’s still there, mocking me, reminding me each time I move that I have rheumatoid arthritis and its co-morbidity, trochanteric bursitis, and that the many therapeutic drugs I take to keep it under control don’t seem to work very well.

That fact aggravates and frustrates me. I think, “why take them, then? They have all those dangerous, toxic side-effects! They could shut your liver down! What then?” But on the heels of that thought is this one: “Yeah, but if I stop taking them my RA might be a whole lot worse. Wanna risk that?”

No. I don’t. I remember rather clearly how bad it feels like when it’s worse. I’ve been there.

It’s easy to say “Don’t be your disease. Don’t dwell on it. Don’t allow it to define you.” The blogs about autoimmune arthritis are full of this advice—the last phrase in particular, lately. As advice goes, it’s all wise and good. I try my best to follow it. But the fact is that when every motion I make causes a jolt of pain, it’s impossible not to notice. Like it or not, it colors my day. I catch myself pre-planning the most efficient route around the grocery store based on my list, hoping to save myself unneeded steps—and then I berate myself for my laziness almost involuntarily. I’m not lazy! It just hurts to walk for long. Is planning that way “dwelling?” Does basing my decisions on how sore I am, on any given day, allow these unwanted conditions to define me? Or am I just being practical?

I get irritated with myself for hoping that new therapies will make a difference. The recent failure of the steroid patches to relieve the bursitis hit me hard even though I’d tried not to hope too much. A further, almost embarrassing irritation: knowing that when Joe the physical therapist writes his treatment notes in my medical chart, he won’t write that the patches failed me. Instead, he’ll write (using standard medical jargon) that I failed the patches, just as I failed the ultrasound treatments and the stretching exercises and the previous steroid injections.

This failure—whether it was mine or the therapy’s—leaves me with only a few options. One is to have the trochanteric bursae in both hips removed (bursectomy)—and accept the fact that I might fail that, too. Some people have this surgery only to have the pain stick around anyway.

Another option is to request a change in RA meds, hoping that by more successfully suppressing my RA, I might also suppress the inflammation that causes the bursitis pain.

The third option is to simply learn to live with this constant background pain in my hips; to accept that I will never again walk without becoming quickly fatigued by the increasing pain the bursitis causes.

I guess I can do that. I do it now as I try various cures. I hope each time that it will work. This third option, though, accepts that there is no hope. That this is my new reality. I hate to admit it, but that just bums me out.

So for the moment, I’m going to place my hopes on a med change. I’m going to talk to my rheumatologist about it when I see him in early June. In the past he’s acknowledged my reports of slowly increasing RA pain but pointed out that my blood tests show notable improvement, particularly since we added plaquenil to my existing cocktail of Arava and sulfasalazine. So pleased was he with the lab results the last time I saw him, he lengthened the time between my appointments with him to six months from three.

Which makes me wonder if this misery is really just all in my head.

I know better than that, of course. But like so many other people who cope with the symptoms of autoimmune arthritis—pain, fatigue, occasional mental vagueness—I can’t help but question my sanity when my doctor doesn’t seem to share my concerns about my general well-being.

So, we’ll see about that option come June. Patience, Wren. Patience.

Choosing bursectomy to relieve the pain and disability is about as attractive to me as accepting this bursitis as a forever thing: I really, really don’t want to. Along with the fear that the end result might not change anything—that I’ll fail it (as opposed to it failing me)—is the knowledge that the surgeon likely won’t remove both bursae during the same operation. Doing so could put me off my feet completely for a while. Instead, they’ll likely remove the bursa in one hip, let that heal, and then remove the other. It could mean months and months worth of healing, increased disability and even more physical therapy. How could I take care of my mother? My aunt and uncle? There isn’t anyone else in the family who can take on those responsibilities, let alone help me, too. Realistically, bursectomy can’t be an option at all.

So. I’m down to two options rather than three: change my meds and hope it works, or find a way to gracefully accept this additional condition as a permanent part of my life.

And then find a way to not let all this define me, not to dwell on it or allow myself to become my disease.

I’d better get to work.