To my surprise, the editors of Healthline have nominated RheumaBlog for their second annual “Best Health Blog of 2012!”
According to the website, Healthline’s mission is to improve health through information.
“We focus our efforts on offering readers and visitors to our site objective, trustworthy, and accurate health information, guided by the principles of responsible journalism and publishing,”
states the text on the “About” page. It continues:
“Our editorial philosophy is to use relevant and accurate content to promote a healthy lifestyle and facilitate disease prevention, as well as to offer clinically significant, medically reviewed information for those who are seeking answers to their health questions. All original content is produced by highly skilled writers or experienced health professionals who are adept at researching a variety of topics and delivering concise, accurate, and engaging information in an easy-to-understand format.”
And so it does. I’m honored to be nominated for Best Health Blog of 2012. The contest runs from now through Feb. 13, 2013, and the winner is awarded $1000. Second place wins $100 and third, $50.
You can help me win by clicking on the “Cast your Vote” icon near the top of the left hand column. Under the “Alphabetical” listing you’ll find RheumaBlog on page 14. You can vote one time per blog per every 24-hour period.
While you’re visiting Healthline’s website, do check out the many excellent articles about health (many subjects!) they offer. They’re right: Good information can improve your health.
Sure, I’ve told my family and a few close friends about my flares, large and small. They know my history—the decade I spent nearly crippled and the one following, during which I enjoyed a long, near-complete, inexplicable but relieved remission. They know that the pain is back, too, and that while it’s frequent, it’s comparatively mild. Mostly.
But they don’t, of course, know my mind. They don’t know—or rather, they don’t comprehend—that the pain is always. Terrible or mild, it never really goes away. Even in the rare moments when the pain does actually disappear, there’s always that niggling question: when will it be back, and how bad will it be when it hits?
With rheuma, one is always in the various stages of girding one’s loins for the next skirmish, aware that it may quickly become a full-fledged battle. And while I’ve never lost a battle against RA, I’ve never entirely won, either. More often than not the rheuma-dragon and I limp, exhausted, to our opposite corners to take stock and rest up for the next fight.
And that long remission? Wasn’t that a win? Oddly, to me, it wasn’t. The dragon simply went into hibernation. He wasn’t gone. For about six years I got to live, pain-free, on borrowed time. But I knew down inside that he’d be back one day. He wasn’t done with me.
No one in my family is aware of how I perceive this disease. What I just wrote above would probably surprise them, even if only for a short time. I don’t blame them for their lack of deep concern; after all, the Wren they see day-to-day is the Wren who’s coping with the pain quietly and getting on with things. You know: Keep Calm and Carry On. (I’ve adopted the words from that famous British poster as my RA mantra.) Since my pain is (knock wood) rarely disabling these days, my family’s reaction to me and my RA is normal and acceptable.
And now I come to the point of this post. It’s hard for me to describe how glad I am to have found all of you, my fellow rheuma-fighters. It is such a comfort to read your posts and comments and realize that you get it, that you know the pain I’m writing about intimately, that you understand how embarrassing and even demoralizing it is to have to ask for help opening the jam-jar or, in bad moments, cutting up your meat.
You understand how the rheumatologist becomes the Rheumatologist, almost the most important person in your life, save significant others, and sometimes he eclipses even them. You get the resigned acceptance that comes with knowing He will not see you again for three months, and that feeling of hope, laced with despair, that comes with starting a new treatment. You understand the frustration of knowing that the new drug probably won’t show any results—except unpleasant side effects—for at least six weeks, and probably a lot longer, even as you hope against hope that maybe you’ll be the exception to the rule. Maybe by this time next week your pain will be gone and the disease under control.
And oh, your empathy. It radiates through the ozone from your supportive, encouraging, often humorous blog posts and comments. How do we do that? Where does that humor come from? Here we are, hurting and sometimes disabled (often permanently) yet we find the humor in the situation and share it with our fellow rheuma-fighters, hoping to buck them up a little, knowing how much it helps. What is that?
I ‘m so glad I decided that day, about three years ago, to search “rheumatoid arthritis blogs” on Google. I never expected to find so many—and not just the blogs, but the living, breathing, people-just-like-me who write them. I count you as my friends, now. My fellow-travelers.
Thanks for being there for me. I’m doing my best to reciprocate.
Author’s note: I wrote this over-long post a few days ago during a bout of irritated, daughterly love. It’s part rant, part crisis negotiation with myself. I thinknearly all adult children who care for elderly parents go through this inner struggle from time to time, unless they’re freaking saints. Anyway, I’m over it. This time, at least.
I wake, swimming up from deep sleep, and open my eyes. After a while, during which I sort out the achiest spots on my sleep-stiffened self, I get up. Say “mornin’” to Mom in her room. She’s sitting up in bed with her coffee, newspapers and cats scattered around her, contented. Like a lot of elderly people, she wakes up terribly early in the morning, so although it’s barely dawn, she’s already been up for a couple of hours.
I stump carefully downstairs.
I pour myself a cup of coffee. Mmm, how I love that first cup in the morning! I used to drink coffee throughout the day, blithely going though three or four pots by bedtime, but now I drink only four cups a day, two in the morning and two after supper in the evening. The first cup has always tasted especially good to me, but now, well, it’s precious.
I swallow my morning fistful of pills, nearly all of them rheuma-related. I get a cup of yogurt out of the fridge—all those pills make for a cranky tummy if I don’t eat something with them—and a spoon to eat it with, and head for the living room.
I sit down, sighing with relief (my bursitis-hips have joined the rest of my joints in the cranky, daily, early-morning protest) and chuckle as Mouse jumps into my lap for her morning schmooze. When she’s had enough and hops down, I put my laptop in her place and power up, looking forward to reading the morning news.
Outside, it’s storming. The short, cool rainy season that follows summer here in California has finally, finally arrived, and the second in a series of four big storms off the Pacific Ocean is generously watering the drought-parched earth. I watch the rain run in rivulets down the windowpanes, watch gusts whip the branches of the twin-trunked redwood tree in the front garden, and listen to it moaning softly around the eaves. It’s so peaceful. It’s as if the rain, so long awaited, is watering my parched spirit, too.
There’s no woodstove radiating warmth in mom’s condo—a woodstove would be overkill, what with central air and heat and this ridiculously mild valley climate—but I still feel nice and cozy. I think maybe I’ll make a pot of soup for our supper tonight, even though this is a warmish storm. The daytime temp isn’t forecast to drop below 55. If I were to go outside, I’d barely need a sweater. Soup sounds good, anyway. And Mom, who’s always cold, will like it.
It’s deliciously quiet. My rheuma-aches begin to ease a little along with the stiffness. I sip my coffee and open the browser on my laptop, preparing to settle in and read all about what’s happening in the world.
Mom suddenly appears at the top of the stairs, swaying. Under her arms are tucked clumsily folded newspaper sections. Her coffee cup is balanced on her cinnamon roll plate in one hand; she clutches her reading glasses, her crossword puzzle pencil and a pair of slippers that for some reason aren’t on her feet in the other. She starts gingerly down the stairs.
I hold my breath, riveted. There’s no point in saying anything about the scary precariousness of her descent; I’ve asked her countless times before to leave her left hand free when she comes downstairs in the morning so she can hold on to the banister rail for safety. She just won’t do it. Her argument is that this—not holding the rail—is how she’s always gone up and down the stairs, for years and years on end, both in this place and in the old house, the one she and my late father lived in for more than 30 years. Never mind that she didn’t have sciatica back then. Never mind that age and increasing deafness and recent illness have all left her with a really dicey sense of balance.
She reaches the bottom of the stairs without a mishap. Again. This time, I think, and I breathe.
And then it occurs to me how early it is and how I’ve only been out of bed for about 10 minutes, and … but … why is Mom bringing all her morning stuff downstairs so soon? Usually, I have about an hour of morning quiet, with me downstairs and Mom upstairs, both of us starting our day in our own way.
Hmmm. “You’re up and about early this morning,” I say conversationally as she bustles past me to the kitchen with her armload.
“Well, I’ve got things to do,” she replies. “I’ve got to get busy!”
Busy? At this hour? It’s barely light outside. I visualize our schedule for the day. Mom’s friend Myrna is picking her up around 11 for lunch and, afterward, a visit with one of their mutual friends, a woman who’s been ill. An AC/heat pump tech-guy is coming later in the afternoon to do some maintenance. But all that is hours and hours away. Busy?
And then, to my dismay, Mom drags her old vacuum sweeper out of the closet in the kitchen, plugs it in and switches it on. The thing’s high-pitched engine shrieks. And there she is, madly vacuuming crumbs off the kitchen floor. She’s got that slightly annoyed, determined set to her face that I’ve known and dreaded since my earliest childhood. She has Things To Do and I should be Doing Things, Too.
The morning peace? Shattered.
Trouble is, I don’t have any Things To Do. At least, I don’t just yet. Glumly, I set my laptop aside and sneak upstairs with my coffee. I’ll drink it in the bathroom, the only place in the whole condo that has a door I can close against the racket except the master suite, which is Mom’s room. Mine is the guest room, situated in the “loft” space. There’s no door. I sleep there, but the only privacy the room offers is provided by a standing screen.
I’ll admit it: I’m frustrated, even a little angry at Mom for stealing this hour of peace from me. I value it. The television blares at top volume nearly all day every day, staying on until 10 p.m., when she goes to bed and I switch the thing off. Mom has to turn it up loud so she can hear it. (She refuses to consider hearing aids.) So this early morning quiet, to me, is lifesaving.
And now, it’s gone.
Why, I wonder, is she so wound up already? I sigh, sitting in the bathroom on the toilet seat, warming my creaky hands on my coffee cup. She’s … old, I remind myself. While she’s perfectly lucid most of the time, Mom has moments when she goes odd and nervy. She’s always been the hyperactive type, rarely lighting for long. The last couple of years, as she’s battled such unaccustomed health problems, have literally been the only ones in her entire 81 that have ever grounded her.
She hates it passionately. “I’m so lazy!” she exclaims, frequently. “That’s all that’s wrong with me. Nothing but laziness!” Gads, I think to myself. She hasn’t got a single lazy molecule in her body. She must see me as a slug. I shake my head. We’re so different in so many ways it’s hard to believe we’re related sometimes.
I hear the electric sweeper racket stop, so I go back downstairs. As I write this, Mom is standing on tiptoe atop a chair in the kitchen, rooting through the cabinet over the oven, looking furiously for something. She already washed down the stove top, changed out the fruit basket, scrubbed all the countertops and tossed any elderly leftovers still hiding in the fridge into the trash can, their plastic containers soaking in a sinkful of hot, sudsy water. Mom’s in full toothbrush-the-corners mode. The kitchen TV is on. The Yapping Heads on Fox News are in full crank at full volume.
I might as well do ablutions, get dressed and make myself ready for the day. In the meantime, I’ll muse on my own home up in the mountains, with busy bird feeders just outside the kitchen windows, the warm, glowing winter woodstove and the wind that sighs, constantly, in the tall evergreen trees. I’ll dream about my own home, where it’s almost always quiet. Where I even have a den, my own private refuge for when I need it.
Mom was sick yesterday and the day before, wiped out and stuck in bed with an awful headache and nausea. I know this morning’s frenetic activity is simply her way of making up for lost time. She’s restless. Antsy. Taking advantage of feeling so much better today. In her world, there’s no time to lose.
I’m glad she’s feeling good today. Really. But I still miss my hour of peace.
Sometimes I think semi-seriously about going back home. Mom’s health is much better than it was, after all. Her sciatica is mostly under control, her new heart pacemaker is ticking along nicely and her other ailments are being treated as well as they’re ever going to be. She’d probably be just fine without me (though she’d be lonely). I could call her every morning to check in, to remind her to take her meds (and which ones, and in which doses), go over what she’s got on the calendar for the day, and just yack with her for a while. I’ll call her again in the evenings, I tell myself. She’ll be okay, and I’ll be home. I feel like a fish out of water here. I always have.
But just as I allow myself to think Mom could mostly get along without me (and convince myself that she won’t lose her balance and fall down the stairs and lay there injured and in pain and utterly alone, unable to call for help), she has another sudden bad spell. It’s happened over and over again, and a few of them have been life-threatening. Her health is, simply, precarious. Her age is finally slowing her down. And I’m the only one in the family who can reasonably take care of her. My sister would help if she could (and frankly, she’d be better company for Mom, as both of them are birdlike and fidgety), but she lives several states away. And she has a full time job.
There is no one else.
When I decided to move back to California after living far away for so many years, it was because my parents were growing old. As the elder daughter, I felt it was my duty to be nearby if they needed me. For a long time they didn’t.
Dad died seven years ago. She was okay for several years afterward, but Mom does need me, now. I’m glad I’m able to be here for her and I’m thankful that her health isn’t so bad that she has to live in one of those terrible nursing homes. Most of the time—even with the TV blowing my eardrums out—I enjoy being with her. I know the clock is ticking.
All I ask for is that short, peaceful hour, first thing in the morning, and I’m good to go.