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.