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.

12 responses to “Working on it

  1. Wren, you are NOT dwelling on your disease, you are just being practical! And goodness knows, you have every reason to feel a bit down and negative now and then, and if you can’t let it out on your blog, where can you? I really, really hope the change in meds does the trick for you. VERY best of luck!

  2. Well, my friend, in my very short experience, IGNORING my disease invites some serious “butt kicking.” So I don’t think your ‘dwelling’ on your disease but trying to sort through a very painful and new reality. The “how on earth can I live with this with any less pain, etc.” sort of thinking that we can be forced to do at a drop of a hat. So here’s a hug and good wishes for less pain.

    • You’re absolutely right about that “butt kicking” quality to this disease when we try to ignore it. Actually, I find that even though I’d like to, I can’t ignore it, anyway. Finding the positive in spite of getting your butt kicked is very important, though, hard as it can be sometimes. Thanks for the hug and kind wishes–I needed that! I hope you’re feeling well, Catherine. Best wishes to you. ;)

  3. Nobody should have to deal with constant pain. I watched my dear mother fight her way through day by day. It did not define her. It defined me, her daughter. I saw such strength in her. The RA knocked her down 7 times, and she got up 8 times. You’re using your gut feelings and your brain power too, so I really believe that you can manage the dragon, dear Zaunkönigen! Sending you warm hugs, warm drinks, and warmest wishes for relief.

  4. Your not failing, the drugs are. I started Methotrexate two weeks ago and am praying it doesn’t fail me. I’m told it might take months before I see any results so I hope the liver hangs in. Meanwhile I’ve lost my primary care physician to illness and finding a new one here in Canada is like looking for a needle in a haystack. RA sucks…ciao

  5. Failing…me thinks it is the meds and even your doctor that is failing you. You are not dwelling on anything but the need to keep moving my friend! And with all on your plate, no wonder you are dwelling on this…you need to keep moving and with less pain at that! Rap that doc on the head and wake him/her up to YOUR reality. Has this doctor talked to you about how you are functioning on a day to day basis, what are you needs personally and how she/he can help you obtain those needs if at all possible? And by all means…rant, rave, and strive on your blog. It keeps people like me smiling and cheering you on!

  6. I’m in agreement with Deb, failure doesn’t suit you. That’s a more fitting term for your doc. And just because you put yourself first when you plan grocery routes doesn’t mean the illness defines you. That’s good sense. When I think of an illness defining someone, I think of them becoming that illness to all loss of humanity. That certainly does not describe you Wren, as evidenced in your wonderful writing. You are full of vigor!
    Take care of yourself, rest up!
    Sunshine

  7. Wren,
    I feel you! I can understand the feeling

  8. Oops! Hit enter too fast! I too feel like I vent too much on my blog but it is our release. If you cannot vent sOmewhere it will all build upand make you very miserable. It also helps others with chronic illnesses! You have helped me learn and made me feel understood on numerous occasions and appreciate that you keep it real! You have not failed, you simply have not found out what your body needs right now! After 18months of taking medicine after medicine this is what I tell myself! Someday you will find the right combo! Keep your chin up and know that I appreciate your blog. Hope you find relief soon!

  9. carlascorner

    Wren: OMG. I am so sorry. I have had severe hip bursitis and I know how debilitating it can be. I used to carefully consider if I really needed a print out because it meant I’d have to get up and walk 10 steps to the printer to retrieve it. There were days that I didn’t know how I was going to make it from my office, across the parking lot to the car. It might not define you, but it certainly limits you in many ways — including day-to-day enjoyment. I wish I could send you something but hugs, but you certainly have those coming your way. (And to ditto everyone’s comments, no YOU have not failed!)

  10. Wren, as someone else said, blogs are here so you can vent. You have to be strong for your elderly relatives who depend on you, so this is your place to unload. Please don’t feel like you need to be upbeat and cheery all the time – we get it!
    I think a change in meds is a very good idea, you’ve been having these increases in symptoms for a while. I hope your doctor looks at the whole picture in June and not just your bloods. Wishing you some easier weeks ahead!