RA super-moms

Pablo Picasso, "Motherhood"

As I’ve read my way through RA blogs over the last ten months, I’ve noticed a recurring theme among the writers who are mothers.  Some of them believe they’re not good enough moms because of their RA.

They can’t always get down on the floor and play dolls and Legos with their kids. Sometimes they have to beg off playing catch, or pushing a swing. Many can’t reliably volunteer to help out with classroom activities. And some have trouble facing the day-long walk-and-wait, walk-and-wait that is the epitome of the modern-day visit to a theme park.

What rotten excuses for mothers these women are! If not for their RA, they’d be SuperMoms!

Whoa. Let’s back up a little here.

At the risk of sounding like your grandmother (a role, frankly, I never imagined myself in, and besides, I’m not gray yet! But, ce la vie.), I’ve got a few things to say. RA moms with kids, this post is for you.

First: I’m a mom. I’m perfectly qualified to voice my opinions about this matter. Second: I worked full-time until two weeks before my daughter was born, and then from 12 weeks after her birth until she was 25 years old. Forty to sixty hours a week, every week, every single year. I’ll toss in a few vacation weeks here and there to break the work-monotony, but as a mother, vacations were never particularly restful. You never get a vacay from motherhood. Third: From the time she was six until she was 12, I raised my daughter in Germany, where her step-father was stationed and I worked. Yes, full-time.

OK. That’s out of the way.

Listen up, Moms. I don’t know what sort of happy horsepucky you’ve been fed about motherhood, but the “mother who does it all” is a myth. There is no such thing as a “super-mom.” Like everyone else – and I mean everyone – mothers are merely human. Some are good, some are bad. Most are both. All of them bring their own experiences as, variously, a daughter, sister, friend, playmate, schoolchild, rebellious teen, idealistic young adult and bread-winner to their turn at motherhood. They have hopes and dreams that may or may not include the concept of motherhood itself. Some are physically fit and healthy, some are not. Some mothers take on the job of raising babies with willing joy. Others are mothers only under duress. Human beings who are mothers come from all walks of life, all social strata, all levels of poverty and riches, all races and cultures, and from all parts of the world.

And, excuse me, but not one of them is a super-mom.  Motherhood is the great equalizer.

In our society today (I’m referring to Western society, as it’s the one I’m most familiar with) we’re bombarded with messages telling us that motherhood is incredibly special, almost sacred. Having a child – no, children – is the most important endeavor of our female lives. We’re presented with sweet, soft-focus images of perfect young mothers with smooth skin, shining hair,  a home as clean as a laboratory and as beautifully decorated as Martha Stewart’s guest house, playing with pink-and-ivory, well-fed, smiling babies. We are made to feel that if we choose not to reproduce, there’s something terribly wrong with us.

Kept well out of this pretty picture of the super-mom are the stinky Pampers in the trash can under the kitchen sink and the loads of laundry – baby’s, mom’s and dad’s – in the washer and drier, waiting to be sorted, folded and hung in closets.

Unmentioned are the 3 a.m feedings, the colic, the crying baby who won’t be comforted. Left out are the toddler tantrums, the constant stress of taking small children everywhere because they cannot be left alone, and the considerable expense and worry of childcare.

Conveniently forgotten are the nights spent hunched over the kitchen table helping the child with homework, the aggravation of teaching them to keep their own living spaces neat and clean, and the drudgery of picking up toys, cleaning dirty formula bottles, and wiping up spilled apple juice and Spaghetti-O’s.

Left out of this pretty picture is the mom who works outside the home for nine to ten hours a day, leaving her perfect child in the hands of random daycare workers or schoolteachers; the mom and breadwinner who comes home in the evening to start working her many other jobs as housekeeper, nanny, playmate, cook, wife and lover.

And never, never mentioned is the mother who does all of this while also coping with RA or other chronic illnesses.

I’m a mom. I was diagnosed with RA after living in Germany for about a year. My daughter was 7 years old at the time, and I worked five days a week, eight hours a day. Nearly every day I did all the above and also coped with terrible pain, crushing fatigue and frustrating disability of rheumatoid arthritis. There were times I could hardly dress myself, so painful were my shoulders or hands. Times I could barely walk for the pain in a knee or ankle or hip. Times when I used a cane, or crutches, to get around. Times when I was so exhausted I hardly knew how I’d get through the next minute, let alone the next hour, day, week or year.

I spent many foggy hours floating in the soft hands of opiate painkillers, the only drugs that had any effect at all on the pain I was in. I sought refuge in them in the evenings after I’d read my daughter her story and tucked her into bed, and on weekends when my husband was also home and could pick up some of the workload while I rested. But I only used those painkillers for the very worst flares. To get them I had to make an appointment to see my doctor specifically for pain relief. I was very lucky: he always worked me into his schedule. And he prescribed ten pills at a time, just enough to see me through the current flare and no more. If the flare occurred during a weekend, I endured until Monday. If it was so agonizing I couldn’t endure, I’d go to the ER, where the doctors treated me with suspicion but, to their credit, gave me enough Tylenol 3 or Percocet to get me through until I could see my doctor. I hated – absolutely hated – going to the ER for my rheumatoid arthritis. Here I was, working, raising a daughter, keeping a house, cooking meals, being a wife and companion and lover – and malingering. Drug-seeking.


Cary at 27, all grown up.

Last night I asked Cary, who’s 29 years old now, whether she ever felt neglected or slighted because I couldn’t do as much with her as other moms did because of RA.

She goggled at me. “No!” she said. I explained a little more about what I’d been reading in the RA blogs by moms with RA, how they worried that their children were somehow being slighted because they couldn’t do quite as much as they would like to do.

“Mom,” she said earnestly, “that’s because we’re all told we have to be super-moms these days, that we have to be perfect and be totally involved in our children’s lives. It’s all bull!” She was surprisingly vehement.

“You didn’t feel bad when I couldn’t go on school field trips with you, or practice soccer with you?”

“Hell, no.” She laughed. “I was glad you didn’t come on my field trips. Us kids were always really embarrassed when our moms came, because they’d always be wiping our faces or telling us to be nice or share or be careful. We hated it. Besides, you did lots of other things with me. I never felt neglected at all.”

“Wow,” I said. “Glad I didn’t go on those trips with you, then. But I always felt a little guilty because other moms did that stuff, but I never did.”

“Guilty! No, Mom, you were great! Don’t you ever feel guilty!”

“You weren’t bothered because I had RA and gimped around all the time?”

“Nope. In fact, I never even thought about it. It was just how it was. You had rheumatoid arthritis. It wasn’t a big deal to me. You were a great mom! You still are.” And she hugged me.

She’s a good kid, my Cary. And a good adult. I’ll be perfectly honest, here: When she was a child and later, an adolescent, I never really felt like I wasn’t a good mom because of my RA. There were other ways that I felt I fell short – I wasn’t a very good disciplinarian, for one, and I sure wasn’t much of a role-model when it came to housekeeping. Who had time for a Martha Stewart house? I worried about how she did in school, because I hated doing her homework as much as she did, and because we’re both artists, I identified too much with her dreaminess and boredom with things like math and history. But the limits my RA put on me never entered my guilt-mix regarding my daughter.

The truth is I just did as much as I was able to do. I went to soccer games and yelled encouragement while sitting on the bleachers instead of jumping up and down on the sidelines. I took her with me when I went downtown to shop in the German coastal city we lived in. We walked or rode our bikes to the huge park frequently when the weather was good, and we took bike rides along the dike that stretched from Bremerhaven all the way to Denmark. We went to museums and visited other German cities, walking all over, seeing the sights and touching the ancient buildings. She was serenaded by minstrels in Renaissance dress in the central square in Bremen, and got to follow the steps of the Four Musicians of Bremen, the fairy tale about the donkey, the dog, the cat and the rooster. She learned to ski in the Austrian Alps, stayed in gasthausen with us on vacations, visited the zoo and went to all the German festivals. Back here in the States, when she was an adolescent, we went backpacking, camping, and fishing. She and I went to stage plays, saw Shakespeare productions, and rode in a wagon train. I did everything I could to help her and support her as she grew from a child into a beautiful young woman, just like any other mother does.

And I gimped my way through all of it, sharing as many experiences with her as I could, even though I had RA. Did I feel guilty? No. Frankly, I never thought about it, either. I simply loved my daughter. I still do.

So here’s what I have to say to you moms who have RA: Lighten up on yourselves. You don’t have to be super-moms. You don’t have to do everything with your child – in fact, your kid will probably appreciate that you don’t. Kids need time away from parental supervision so they can find themselves and learn to be individuals. They need to develop serious survival skills independent of their parents. Play with them, read with them, take them to new places when you can, teach them, but above all, love them. Be there when they need you, but don’t hover. Help them, but also allow them to help themselves. And don’t feel guilty because you don’t fit that soft-focus image of perfect motherhood.

No one does. It’s false. A myth. It’s unobtainable for the vast majority (if not all) moms, just like a fashion model’s stick-thin figure. So drop that load of bullpucky guilt and worry. Your kids will be just fine in spite of your RA. In fact, they might turn out to be even better people because of it – they’ll know empathy and have respect for those with disabilities as equal human beings. They’ll be kind. They’ll know how to love.

And isn’t that all that we moms want, really, in the end?

RA and diabetes: Let’s get real

While perusing the latest news about rheumatoid arthritis, I came across an article in Athritis Today that announces that researchers have linked RA to diabetes.

To quote the article:

The risk of getting diabetes is about 50 percent higher in patients with autoimmune forms of arthritis, such as rheumatoid arthritis, or RA, and psoriatic arthritis, according to a new study in the June 28th, online edition of Annals of the Rheumatic Diseases.

Excuse me, but duh.

Further down in the article comes this jaw-dropper:

Dr. Solomon says the exact cause of the increased diabetes risk is not known.

They follow up with some educated guesses, but they’re kidding, right?

Of course people who suffer from RA and PA (and other forms of arthritis, I bet) are more likely to get diabetes! (I’m guessing the researchers mean Type 2 diabetes, the kind that generally affects middle-aged and older adults, though the article doesn’t make that clear). People with painful autoimmune diseases find it very difficult to get adequate exercise or even, sometimes, to get out of bed in the morning. Even everyday exercise, like the kind you get vacuuming the carpets or weeding a garden, can be impossible when joints are painful and inflamed. Walking can be impossible.

That means that many of us with RA gain a lot of unwanted weight. That makes it even harder to exercise or even move our bodies normally. So we gain more weight, and exercise even less, which leads to depression and yet more weight gain. Add to that being middle-aged, and now we’re also likely dealing with metabolic syndrome and yes, a greatly increased chance of becoming diabetic, too.

What a vicious circle that is!

Thing is, we’re no different than any other “group” of individuals when it comes to developing diabetes, except that RA adds almost daily pain and stiffness to the mix of reasons we don’t get enough exercise to counterbalance the number of calories we eat.

I’m always disappointed when I read “news” about studies like this.  Someone spent their time and money on this study? Shoot. They could have just asked me (or just about any other person with RA) about it and saved themselves all that trouble and expense.

Here’s the deal, though: Even with RA, PA and other painful autoimmune diseases, there’s no reason we have to resign ourselves to that 50 percent probability of developing diabetes. Like our “healthy” brothers and sisters out there, we can avoid that awful disease by eating mindfully. Sure, exercise can help, but it’s not a requirement for weight loss. What is required is to say “no” to sugary foods, along with processed foods and beverages that are loaded with sugar and/or high fructose corn syrup. This doesn’t mean we can’t ever have those foods. It just means we need to make those foods a rare treat instead of a daily part of our diet.

We also need to avoid the high carbohydrate foods that our bodies convert into sugar once they’re digested, like white flour, white rice, pasta made with white flour, and potatoes. If we stick to wholegrain breads, pastas, brown rice (I absolutely love brown basmati rice, by the way) and other whole grains, we’ll still get the carbohydrates our bodies need for fuel, but without the massive sugar spike that plays havoc with our blood glucose levels and makes us more likely to develop diabetes.

If we’re meat eaters, we need to choose chicken and fish over beef. Our bodies digest these meats far more efficiently, they have less or none of the saturated fat that beef is loaded with, and fish, in particular, comes with other excellent natural metabolic benefits. Here again, it doesn’t mean you can’t ever have a nice steak, sizzling hot off the grill, the occasional hamburger or Grandma’s Sunday meat loaf. It just means that those meals are special. A treat. Rare.

We also have to listen (finally!) to our mothers and eat our vegetables. Lots of them. We need to choose fresh fruit for snacks and dessert instead of chips, donuts or cookies. Yeah, I know.  It’s tough. But it’s also very doable, and the results of nutritious eating are many and tangible. Who doesn’t feel better when they drop a couple of dress sizes? Who doesn’t feel better when they don’t have to worry about breaking the plastic patio chairs when they sit down?

Once we’ve made these vital changes in our diets, then comes simple portion control. We must eat less of everything. If we have a good day, pain-wise, tossing in some moderate exercise to burn a few calories and strengthen our muscles, bones and joints can’t hurt a bit, either. But smaller portions are key. Less food, eaten slowly, attentively and with real pleasure allows our brains to say “I’m full!”  sooner. Big portions, gulped down without much attention overwhelm the brain’s satiety signals. Eating less food more slowly means we leave the table feeling well, energized and light on our feet instead of stuffed to bursting, uncomfortably heavy through the middle, and drowsy.

So good-bye, “50 percent higher chance of developing diabetes.”  To me, studies like this only scare-monger. They don’t really address the reasons behind the statistic, at least not within the first couple of paragraphs. And because of that, they just make people with RA feel that much more fearful and hopeless.  Like, “Oh, great. This means I’m going get diabetes one of these days, too. Thanks a lot, RA.”

I think it’s vital that we know how much control we actually do have over our long-term health and wellness. It’s worthwhile to learn about it. It’s worthwhile to put in the effort it takes to eat healthfully and mindfully. It’s worthwhile to do all we can to be healthy, even as we face the daily challenges rheumatoid arthritis throws at us.

We don’t have to accept these glum predictions about our possible, upcoming bad health. We don’t have to sit by helplessly as we get sicker and sicker. When it comes to developing Type 2 diabetes, we do have some control. We can change that study’s results. We don’t have to be a sour statistic.

I’m doing everything I can to ensure that I never develop Type 2 diabetes.  Frankly, I just don’t need the added misery and hassles on top of the RA I already have. How about you?

Watch for ice

I swear. It’s my summer for freak injuries.

It was such a nice, peaceful morning, too. I’d fed all the beasties, done my morning ablutions, made myself a cup of coffee. I’d taken Finny out for his morning constitutional, noting how warm it was already, even at 8 a.m. Mr Wren hadn’t gone to bed until the late wee hours – he’d gotten hooked playing online Risk and now was just getting into his “night’s” sleep. Shadow had come out for his breakfast and then disappeared again in the bedroom.

I got my laptop and brought it out to the living room, where the cooler air reaches from the swamp cooler.  I started reading today’s news and sipping my coffee. It was quiet. Soft.

Then I noticed movement to my left. I glanced over just in time to see Shadow about to squat and poo.

“No, Shadow!” I yelled, and jumped up to grab his leash and take him outside. He rarely has an accident in the house, so I knew the poor dog was desperate. Neither he or Finny have learned to scratch the door or whine or otherwise let us know when they need out yet, so we do it mainly by just sticking to a schedule.  Whoops. Looks like Mr Wren didn’t follow it this morning before he dragged himself to bed at dawn.

So I’m running for the leash, which is hanging over the back of a kitchen chair. I’m wearing rubber flip-flops on my feet. And suddenly I’m  running on ice. My right foot just slides out from under me;  I try to stay upright and the other foot slides, too. I’m airborne, twisting around … and I hit the floor, ending up flat on my stomach.

Why did I slip and fall? Shadow had left a great big puddle on the bare floor.  Add smooth rubber soles with no traction, and you’ve got me, doing my best imitation of a chubby stork on ice.

Cary, who’d been in the kitchen, witnessed all of this. Bless her heart, she was right there, asking if I was OK. Once I got my wits back together, I told her thought I was and asked her to please take Shadow outside, quick, that he really needed to go. She helped me to my feet and, clipping the leash to his collar, ran him outside.

You know,  I’m simply not used to falling, tipping over, or going splat. I guess none of us are, really, unless we’re athletes who play games in which falling down is normal.  I’ve noticed that when I do take a rare tumble the ground is a whole lot harder than it was when I was a young whippersnapper. I don’t bounce much anymore, either. Funny how things like that change. Could it be global warming?

Anyhoo, fast forward to now, mid-afternoon.  Along with a base of rheuma-inspired achy hands and wrists (about  a “3” on that silly pain scale) I also have a slightly sore left elbow, a lightly bruised left knee, and a really sore right thumb , pointer finger and wrist. I must have landed on all those sore spots, somehow, as I made my graceful landing. I really can’t remember, since I went from upright to belly-flop in about two seconds.

As you know, I love my beasties. Finny is a giggle a minute and Shadow is a kind, sweet dog who wants desperately to please. But I swear, this summer my furry friends are out to get me. I’m learning to look before I step and not to grab collars without warning.

And now, since trouble likes to occur in sets of three, I’m wondering what sort of charm the third time will bring.


Heat rave

Wow – seven days since my last post! I think that’s a new blog-neglect record for me. I wish I had some great or interesting excuse for my absence here, but I don’t. No dog bites. No emergencies. No unexpected company or household catastrophes. I simply didn’t have anything interesting to write about.

In all honesty, I still don’t.

But I do love to write, and I miss you guys. So I’ll think of something.

On the RA front, it’s been pretty quiet. I’ve had a couple of days during which my hands barely hurt and more days during which they hurt constantly but not horribly. The hip bursitis comes and goes. Yesterday was rough; today I’m pretty much over it. I just keep taking my sulfasalazine and Arava, my folic acid, calcium/Vit. D, and magnesium supplements. A multivitamin. Tramadol when my discomfort reaches a level I cannot distract myself from and Vicodin for the fortunately rare, really, really bad flares.

It has been very hot. Low-to-mid-90s all week so far, and today the forecast is for the high 90s (it’s possible we’ll top 100) through the weekend. We have a swamp (evaporative) cooler here at the Wren’s Nest; it cools the house down nicely as long as the outside temp stays under 90 degrees. Once it tops 90 the cooler is pretty much useless. So we’ve been eating a lot of cool salads for supper and generally not moving around very much after mid-day.

I am grateful I don’t live down in the valley, where temps will reach between 102-109 degrees during the next four days. The nights will barely get out of the 90s before the morning sun turns the oven up again. At least up here in the mountains our night-time temps drop into the 70s.

And the 70s are only “cool” in a rhetorical sort of way.

Yeah, yeah, it was only a week or two ago that I was whining about the strange, cool weather and unseasonable rain we’ve been having. I complained even though I knew it wasn’t going to last much longer and that this whomping, oppressive summer heat was inevitable before long. If you could have heard me talking about it (rather than reading my words here), you’d have asked why I was whispering. You’d have told me to speak up, and I’d have shaken my head madly, pointed at the sky and, finger to my lips, shushed you. Don’t tempt the Weather Gods!

Here’s the thing. I don’t mind warm weather. And I really like sunshine. I enjoy soaking up a few rays as I take walks or putter around in the garden. But when warm turns to searing and sweltering and the sun transforms itself into a deadly alien heat-ray, I get a little cranky. I just can’t help it. The Sweltering-Alien-Heat-Ray season generally lasts from May through mid-October in Northern California. We got a long heat delay this year, but that’s over.

This is the reason I’m determined to relocate one more time before I die. I dream (literally!) of living once again in the cool, rainy Pacific Northwest.

And here’s my last excuse for not posting much recently. (Yes, I’m a wimp.) When it’s hot, my Scandinavian genes, which were designed specifically for life in the chilly far north, go into shock. I become slow and sluggish. My brain melts into sludge. All I want to do is find a cool corner where I can curl up and hibernate until true autumn arrives, bringing with it lower temperatures, cool breezes and a reason to put the quilt back on the bed at night.

Well, according to the thermometer on the wall, it’s 80 degrees here in my den as I type this. The cool air generated by the swamp cooler doesn’t reach this end of the house, so I’m going to have to move. This is what I do all summer long: follow the trickle of cool air around and try to make my brain work. Wish me luck.

I hope you’re all staying cool and comfortable, and that the rheuma dragon isn’t biting you too hard. With any luck, the heat will make him sluggish, too!

Not half-bad

It’s mid-day. I’ve waited as long as I can, but I’m out of patience. I shake two Tramadol tablets into my hand, pop them into my mouth and wash them down with a couple gulps of iced tea.

There, I think. In a little while, I won’t hurt so much. Maybe I’ll feel like … I don’t know … thinking up something cool and crispy and nutritious for supper, doing the chopping and slicing, then putting it all together. Maybe cooking the protein source – chicken or fish, most likely – early, before the afternoon heat shuts me down.

Or maybe I’ll feel more like bustling around and getting some housework done. Sweeping. Dusting. Vacuuming the rugs. A quick swish through the bathrooms.

Or a walk. Maybe I’ll grab Finny and we’ll have a walk ‘round the neighborhood. Look at the neighbor’s gardens. Bring my spare change with me and stop by the little old general store in town for a bar of dark chocolate. I’ll ration it out over the next several days, one glorious square at a time in the evening after supper, with my coffee.


It all depends upon my hands, my hips, and right now, my right knee. They’re all giving me hell, particularly the knee, a country I haven’t heard from in a long

I took this photo in a town near Los Alamos, New Mexico, a couple of years ago when I was there visiting my sister. The storm sky there was much wilder than I've seen here, but it's just as strange ...

time. It could be the weather that’s riling up the rheuma-dragon; it’s going all dark and strange again. It’s been hot – 80s and 90s – for the last week or so. Summer was delayed here in the Sierras, but it finally showed up with a vengeance, sitting it’s sweaty elephant-butt down on us for a nice long stay. But both yesterday and today (and for the rest of the week) we’re getting what I can only describe as storm-drifts. The ominous, pregnant-looking thunder clouds move over, blocking out the sun and raising the humidity, and then move off again a few hours later after doing nothing more than mutter threats. The weatherheads think we’ll get some actual storms this afternoon and evening. I won’t mind rain if it comes, but this dry country could do without the lightening that preceeds the thunder. And frankly, I could do without the barometric pressure waking up my cranky rheuma-dragon and his sidekick, the Biting Orc of Bursitis.

This weather is like snowballs in hell, gang. In my entire life, I’ve never experienced thunderstorms in California during the summer. I know they happen with regularity elsewhere in the nation and the world, but here, summer has always been one long, long, long dry season. Rain in summer? Heh. Maybe it’ll show up again in November.

But here’s the new reality. Even as I write this, the sun outside my window is taking on that odd, muted look, as if some sun-goddess has draped a scarf over her lamp. Yesterday was dark enough that we had to turn lights on in the family room to disperse the gloom. Looks like today will soon be the same.

And it’s still hot. These storms (!) don’t do much to cool things down, now that the earth has soaked up so much heat from the sun. Instead, it just gets muggy – and that’s another phenomenon that’s rare as all get-out everywhere in California except some parts of the coastline. I experienced this hot muggy-ness when I lived in Northern Germany; living right by the sea’s storm-door, summer storms were normal, mainly at the end of the summer. The walls would sweat with moisture, my rheuma would go wild, and when they struck, the storms were nothing short of spectacular. Sometimes they were scary, but they never lasted long.

Just for kicks and giggles, my seasonal grass allergy has turned itself up to high today, so my schnozz is packed, my eyes look like I’ve smoked something illegal and my throat is constantly tickling, making me cough my toes up. Along with all the other meds, I’ve added my emergency Claritin, allergy eye-drops and nose spray.

I’m a real beaut today, gimping around the place with tissues stuck up both nostrils.

But there is good news! Even though I’ve been less-than-totally-mindful about my diet the last week or so, making me reluctant to step on the scale, I discovered this morning that a pair of shorts that were too tight to wear last summer – think cut-off sausage casings – fit me loosely now. That just delights me!

Another gift: Shadow is finally learning that “OUT!” means “Go sit by the kitchen table and watch me while I work in the kitchen instead of standing an inch away from me, where I will trip over you.” Finny, on the other hand, has not learned this yet, but we’re working on it. He has learned that he’s supposed to pee outside when I take him out on his lead, rather than wherever and whenever he feels like it inside. He hasn’t grokked the poop part of the deal yet.

We’re working on it. Shadow has his bathroom manners down. I’m hoping that Finny will continue to look to him, the younger dog by a few months, for continued inspiration.

The upside: both of these new dogs bring me joy every day. Shadow is gentle and so sweet-natured, he reminds me of our old Nessie, a Lab-Doberman mix we lost to old age six or seven years ago. I’ve missed ol’ Ness; she was truly the sweetest dog I’ve ever known. In Shadow, she’s come back to us, and I’m so glad.

Finny McCool continues to reduce me to gales of laughter. He’s like a cartoon character, I swear. He has the most expressive face I’ve ever seen; the photos I’ve posted of him don’t do him justice, because he puts on his glum look whenever I bring the camera out. But believe me, he has a whole repertoire of expressions that his scruffy whiskers and overhanging eyebrow hairs only emphasize. He’s my constant companion 24 hours a day. At bedtime, he jumps on the bed and falls over, limp as a ragdoll, totally ready to go to sleep. It just cracks me up.

Scientists and neurologists say that laughter releases serotonin in the brain. It’s our body’s natural painkiller. No wonder I love to laugh.

So. Freak thunderstorms in the summertime. Heat and humidity. Dog-people as best friends and spontaneous comedians. Rheuma-dragons and bursitis orcs doing their cranky best to make me cranky and low.

That’s my life at the moment, but I’m holding my own, wearing my comfortable “new” shorts and a T-shirt. It may have it’s unpleasant moments, but life’s not half bad, you know? I’ll keep my bitching to a minimum and conjure up something yummy and life-celebrating for supper.

And then Finny and I will drop, limp and boneless, into bed for a good, long sleep.

Quiet, with an update.

Saturday morning, a few hours before noon:

The fan in the window blows soft, still-cool air and white noise into the room. My chair creaks as I write; writing requires a certain stillness but my joints are stiff; shifting a little now and then eases them. Bright sunshine makes glowing, lime-green shapes out of the grape leaves on the tendril trying to wriggle through the screen and turns the pink damask roses climbing the arbor into the ones I used to gaze at on my grandma’s talcum powder box in her bathroom. I loved the scent of her powder: it evoked old lady and steel teaspoons offered for digging in the soft soil in her garden to make earthwormy mud pies. The talcum scent was grandma: the soft summer mistress of fresh cherry pies with open basket-weave crusts, served in wedges with grand scoops of  melty vanilla ice cream on chipped blue plates.

She taught me the itsy-bitsy spider/water spout song.


Tonight my hands are swollen and hot. They hurt. There’s almost nothing you can do that doesn’t require the use of your hands, so there are very few moments when I’m not noting the pain and trying to ignore it. I’ve taken my magical potions. I’ve performed the solemn rituals with hot paraffin wax; the gentle massage with cool glycerin salve. I’ve put on my warm compression gloves, only to take them off again because my hands sweat and I get too warm wearing them. That’s just another discomfort, one I can control, so I did. I’ve meditated, hands loose at my sides, unmoving, resting. I’ve immersed myself in distractive activities, and I’ve bulled on ahead and done many things today in spite of the pain, proving once again that the rheuma dragon isn’t going to stop me from doing as I like.

So there. Neener-neener!

But what I keep coming back to is this: At this moment, every moment, my hands are swollen and hot, and they hurt. And there’s not a bloody thing I can do about it.

To those of you reading this who don’t have RA: Think of how you feel when you have a sick headache that just won’t let go, but you still need to keep going and get through your day. Now imagine that sick-headache-feeling centered in your hands, or your hips, or your knees. That’s how a medium-intensity RA flare feels to me. For a severe flare, think migraine.)

This, then, is the basic frustration caused by rheumatoid arthritis. There are times when the joints become so inflamed and painful that all activity has to stop. Just has to. No choice. It’s awful when it happens, but at least a severe flare means that I can justify my stillness, my aggravation, my rocking as I try to comfort myself, my tears, my anger, the handfuls of pills. But this kind of flare – the flare that inflames the joints only halfway, so that they’re stiff and full of pain, but still usable – is almost worse, in my opinion. Because this kind of flare is mostly invisible. Hide-able. I can still prepare meals, scrub dishes, sweep floors, feed pets, plant flowers, fold laundry. (An aside: folding the towels, each one dry and hot right out of the dryer, felt crazy good on my sore hands today. Thank you, universe!) I can still do all those things, but each movement, each moment, hurts. And hurts. And hurts.

Don’t get me wrong. I’m grateful that I can still function. I’m grateful that I can plant flowers and cook a delicious and nutritious meal. But this kind of rheuma flare wears a person down. It goes on and on. Days. Nights. Weeks. Once in a while there’s a short respite; I’ve gone half a day before I even noticed that my hands didn’t hurt. The constant pain, as low-level and therefore dismissible as it is, starts coloring everything in dark tints and tones of reddish-gray. My mood shifts from good to neutral to bad. I see the gifts the world presents to me, but I can’t conjure up more than a disinterested shrug. My creativity wanes; I lose my motivation. My mouth has to be forced to smile.

I’d almost rather have the rheuma attack me the way it used to: Hard and mercilessly, causing pain that was literally overwhelming and that lasted 24 hours or three days, but then went away as quickly as it came on, leaving me tired and shaken but pain-free for a while. That rheuma was awful, but after a while it became familiar. I understood its limits – and my own.

But this … this constant, day-after-day-after-day, low-grade pain is sapping my strength. It’s making me whiney, and angry, and hopeless. Because I know that it’s not going to go away, except for brief moments here and there, and then it will be back, just the same. It’s my rheuma-dragon’s newest tactic; he’s taken up guerilla warfare. War by attrition. Winning by simply outlasting the enemy. Conventional tactics don’t work against it; you can’t beat it with soldiers and heavy artillery (powerful drugs and painkillers).

You have to get to the root of the problem and make changes there. (Lose weight. Eat mindfully. Move your body). It’s slow. It seems useless. But over time, it can work.

Heh. I just imagined my body as Northern Ireland during the Troubles. Take that, rheuma-dragon! You haven’t killed my imagination yet, you bugger!

This post isn’t a call for sympathy; most of you who are reading this are quite familiar with what I’m writing about. And you know, as I do, that even this won’t last forever, that I’ll feel better before long, that a good night’s sleep will renew my strength and courage, that tomorrow’s another day, another battle, another victory. Instead, I wrote this post to get the feelings into something tangible. Into words. To get them out of my mind and while I did, forget for a short while how hot, swollen, and sore my hands are.

It worked.