Mindful awareness

The last time I visited my rheumatologist, I told him about the creeping, growing pain in my hands. I told him I was afraid of it; that this insidious pain reminds me, constantly, of how truly awful the pain was in the bad old days, back when my rheuma-dragon was black-dragon-sinister-evilyoung and impossibly strong and voracious. How the medications I was given to combat him were worse than useless. And how I fear that the ones I take now might be losing their effectiveness.

Is there something else I could try? I asked.

He acknowledged my pain and my fear, but counseled prudence. My sedimentation rate (which indicates levels of inflammation in the body)  was indeed higher than it had been in a long while, but not nearly as high as it had been when I first started seeing him in 2009. He said that should my RA continue to get worse, we could try a biologic DMARD. The VA currently offers Humira or Enbrel.

Switching to the heavies, though, he said, was a big step, and one I shouldn’t take lightly. I should read up on them, learn all I could about them first. These drugs, he cautioned, can have serious side-effects. They can be miraculous, but I should consider my options carefully before I make a decision to try them.

And then he said something I’ve never had a doctor say to me before. In the meantime, he said, looking directly into my eyes, I should “try to live each and every day to the fullest. Appreciate every moment.”

I assured him that I would. He wished me well, said he’d see me again in three months, and went on to his next patient.

Bemused, I drove home.

If you’ve read RheumaBlog for long, you know that I’m an avid advocate of mindfulness, of living in the now, the present moment. You know that I try to look for the gifts the world offers every day, and that I try to appreciate and be thankful for what I have rather than worry about what I don’t.

And while I’m only human—I sometimes get bogged down in the mundane, mucky swamps of life—I do try very hard to “live each and every day to the fullest.”

I really do. I discovered the value of mindful awareness back in the bad old days, when the pain and disability of my RA was so new and fearsome and devastating. I learned to look for the gifts of each day: the fairy ring of mushrooms hiding in the back lawn, the blackbird singing his trickle of liquid notes in the hedge just before dawn, the scent of gardenias in the air at dusk, reading “The Hobbit” aloud to my small daughter just before bed. Small things, all of them, but precious. Always precious and so fleeting.

Sabine, who writes the blog “Interim Arrangements”, recently wrote about another serious and important thing:  mindful kindness:

Thank you, Sabine. http://interimarrangements.blogspot.com
Thank you, Sabine.
http://interimarrangements.blogspot.com

And she shared this, a quote from a medical expert she once interviewed :

“While modern medicine cannot cure your illness, understand that your most important human qualities – your personality, your feelings, your intellect, your memory, your ability to love and be loved – are not restricted by being ill, not now and not in future.“

Wow. I think that’s what my doctor really meant. What an excellent truth, an excellent gift, to step into the New Year with!

I wish that truth for all of you in 2014. May your New Year be filled with hope, with love, and with quiet happiness.

Knowing

You know, I hate not knowing.

I’m just about the most curious person I know, and I like to know. I like to know everything that I can know. Searching for answers gives me joy. When I find them, when I know … well, I just love that. I love knowing.

But there’s one big thing in my life that I don’t know. I never know. Even though I’ve searched and searched for answers, I just don’t know the answer to this one.

Grrr.

OK. By now you’re grinding your teeth. Come on, Wren! you’re muttering. What is this thing you don’t know? Tell us, already!

I don’t know when my RA will flare up.

I don’t know if my next flare will be a doozy or the kind I can shrug off. Sure, I know what causes the flares. I mostly know what to do about them, or, at least, how to treat them. Heat, ice, painkillers, range-of- motion exercises, distracting activities like reading or writing or listening to music. Easy-peasy.

And I don’t know when the flare will come. Will I wake up with it? Will it hit while I’m at the grocery store? While I’m pushing my uncle in his wheelchair around the VA hospital? When? Come on. I wanna know!

I don’t know which joint (or joints) will be affected, either. Will it be my right foot, while I’m driving in heavy traffic? My left hand, while I’m writing on deadline? (I’ve had nightmares for years about that one.) Will it be one shoulder or the other when I’ve got a busy day looming, full of errands and responsibilities I can’t reschedule or cancel without causing myself or others a lot of trouble?

That’s the thing about rheumatoid/autoimmune/inflammatory arthritis. You just can’t know. You can’t know when the flare will happen, which part of your body will hurt like a you-know-what, and you can’t know how long it will last. A few minutes? A few hours? Several hours? A day? Two days? A week?

More?

And finally, I don’t know what other people think about me when I gimp on the left foot one day, the right foot the next. And when they see me again, it’s my hand that’s bad. Anyone who knows me also knows I have RA, because I’ve had to tell them why I was disabled that way yesterday, this way today, and maybe that way tomorrow.

But I still wonder if they think I’m faking it, just for the attention (a worry that makes me cringe.)

I just don’t know.

Well, I’ll keep looking for the answer. I really, really want to know.

The ritual

This morning:

I wake up and, as I have since I was a child, immediately sit up and swing my legs off the bed. Morning is here—things to do!

Ow. Ow ow ow! The large joints in my shoulders, elbows, hips and knees growl in outrage at my sudden change in position. How dare I move without  warning!

In my mind, I growl back at them. And then I sigh. Right. I’m stiff from spending the long night in the basically the same position. Nothing new here, move along. I look at my hands. Yes, they’re swollen ‘round the knuckles.

This is my newish normal. I say “newish” because this pronounced stiffness in the morning only started about five years ago. Back then, I was only a little stiff in the morning. The first five minutes or so. But over the years it’s gotten steadily worse. I wonder if I’ll be able to get out of bed at all ten years from now.

But I don’t like to think about that. I’m taking powerful anti-rheumatoid arthritis drugs. Handfuls twice a day, every day. And there are more of them out there that I haven’t tried yet. They’re waiting in the wings, enthusiastic understudies, ready to step in should the principals stumble and fall.

Denial is a wonderful coping tool, isn’t it? Don’t let anyone tell you otherwise.

My mornings, while stiff and sore, are different to how they were when the rheuma-dragon first started gnawing on my joints, 26 years-or-so ago. Back then, my body wasn’t stiff in the mornings, but I often woke with some major joint or other badly flared. On top of that, putting my weight on my feet to walk first thing in the morning was always agonizing. I’d gimp grimly to the bathroom, teeth gritted, to get ready for what promised to be a very long day.

Now, all these years later, my whole body stiffens up overnight. I shouldn’t be surprised—my joints stiffen up these days every time I stop moving them for more than a couple of minutes. Yes, I’m a lot older now. But this daily physical impairment isn’t a a result of age alone.

It would be one thing if my joints were just stiff. But moving them hurts. And for an hour after rising—at least an hour—it hurts to move my whole body. It hurts just to stand in one place, let alone walk around.

But back to this morning. I go down the stairs slowly and carefully, gripping the banister with my left hand as tightly as I can. If for some reason I happen to trip and fall—a cat runs between my feet, maybe, or I put a gimpy foot too close to the edge of the riser and slip—my grip will not save me. My hand won’t hold. By the time I’ve tumbled down the stairs, I’ll also have wrenched every tender, grumbling joint in that hand.

In the kitchen, I take my morning meds, get my coffee, give Mouse the cat a couple of treats—she’s always right there, asking for treats and making me smile in spite of myself—and stump over to my favorite armchair. I sink down into it, relishing the softness of the upholstery and sighing with relief as my weight shifts off my complaining feet and legs and resettles on my behind. Whew!

(Let me pause here for a moment to say: I’m very aware of how lucky I really am. There are so many people with autoimmune inflammatory arthritis who cannot stand, cannot walk,  and cannot grip with their hands at all. They cope with far more pain every day than I do, yet they just get on with life.  I am awed. Humbled.)

A little later …

It’s amazing what a brief shower can do. As my muscles warm and relax under the spray, I do some gentle stretching and range-of-motion exercises.  But “exercises” is a silly word for them; they aren’t really that. I just force coax all my major joints—including the ones in my back and neck—forward and back, up and down, left and right a few times. Sometimes I have to grit my teeth, but the warm, soothing water generally wins out over any discomfort. When it doesn’t, I stop that nonsense right now.

I get out of the shower and pat dry carefully. My hands are still tender, even if they aren’t stiff anymore, and hanging onto the bath towel hurts. I dress without much trouble, though the bra clasps irk my fingers. Still, quickly done. Then I clean my teeth, grateful for my 10-year-old Sonicare® electric toothbrush. A tight grip isn’t required to wield it, and it’s not heavy. Technology at its finest! And if that’s not enough, that blurring, buzzing little brush also encourages any low-life gingivitis and periodontal disease that might think about settling in my neighborhood to move along.

I brush my hair this way and that, hoping I can get away without styling it this morning. Ugh. Nope—sleeping has made it stick out here and there without any sort of symmetry. Dang. I plug in my hair dryer, grab a brush and get started.

I bought a very small, very light hair dryer several years ago, when my hands first began their stiff-and-sore-act every morning. My old one was way too heavy, and with my diminished hand-grip, “fumbling” is the only word I can think of to describe my styling method. Oh–and painful.

My little dryer is a much better choice. The only trouble now is turning and rolling the brush under the dryer’s blast of hot air. Ouch! Ow! Grrrr … I manage to tame my goofy hair eventually. Good enough. It’s Sunday. I’m not going anywhere today, and Mom and the cats don’t care if my hairstyle isn’t perfect.

Thank goodness.

And now it’s time to get my real start on the day. I have some freelance writing to finish, work that challenges me and brings in a few occasional dollars. That I really love researching and writing—and get to do it for money!—is a gift to me from the world, and believe me, I’m grateful for it.

I just hope my hands keep working.

P.S.   1. I’ve changed my background color back to black because, well, I like it that way.

2.  Please excuse the blizzard. WordPress is behind it, not me. I like it, sorta, but it does quickly become tiresome. Be patient. It will be gone on Jan. 1, 2014. 😉