The semantics of RA

As I write about rheuma, there are words and phrases I’ve decided, without really thinking too hard about it, not to use.

One of the words I shy away from is “suffer.” A phrase I dislike is “my RA/rheuma/rheumatoid arthritis.”

It’s probably just a personal quirk. I love playing with words. Done right, words can sing in the reader’s mind, even as they inform and entertain. Done with care, they can paint imagination-pictures of stunning simplicity and beauty. Words create worlds.

I’m also hyper-aware of semantics and rhetoric. And, while it’s an ongoing personal struggle for me, I’m a fascinated student of the power of positive thinking. How I think about myself has a profound effect on how I am.

My hands and wrists ache and twinge this morning. It’s nothing new. As I settled down to write, I acknowledged the pain with a sigh and gave each of them a gentle, encouraging rub and squeeze. A caress. A few minutes later, I started to type the word “suffer”  — and automatically censored myself, using “cope” instead. I don’t “suffer” with rheumatoid arthritis; I “cope” with it. A little further into the post, as I wrote about my personal experience with the disease, I consciously steered myself away from writing “my rheuma” or “my RA.” And then I stopped. Why isn’t it “my” rheuma? Why don’t I “suffer?”

For  me, the word “suffer” evokes heart-wrenching images of starving third-world children or a bed-bound, terribly weak, terminally ill person. Rheumatoid arthritis can be breathtakingly painful and it can absolutely force changes in plans and lifestyles, but to compare my situation with that of a skeletal, balloon-bellied infant or to someone dying, agonized, from cancer seems just a wee bit overwrought. Weak. Even spoiled. And yet the headaches in my hands are real. The rheuma-dragon rarely lets me forget it.

I looked up “suffer” with Dictionary.com. (It never fails to delight me that I can click into an online dictionary rather than pull the thick, heavy, hard-bound version off my bookshelf. I harbor a definite nostalgia for books, but my hands are so very grateful for the alternative.) Here’s what I found:

Suffer: A verb, used without object, to suffer is to 1) undergo or feel pain or distress: The patient is still suffering. 2) sustain injury, disadvantage, or loss: One’s health suffers from overwork. The business suffers from lack of capital. 3) undergo a penalty, as of death: The traitor was made to suffer on the gallows. 4) endure pain, disability, death, etc., patiently or willingly.

As a verb, used with object, to suffer is to 5) undergo, be subjected to, or endure (pain, distress, injury, loss, or anything unpleasant): to suffer the pangs of conscience. 6) undergo or experience (any action, process, or condition): to suffer change. And 7) to tolerate or allow: I do not suffer fools gladly.

 Well. “To undergo or feel pain or distress.” I definitely do that almost every day. I also “endure”  and “tolerate” this disease as patiently as I can manage, if not exactly willingly. After all, having RA isn’t a choice.

 So to use the word “suffer” isn’t really being wimpy. The word doesn’t imply an appeal for sympathy or attention. It simply describes, in the most accurate and concise way, how someone with rheumatoid arthritis feels, physically and mentally. I suffer when my hands throb. I don’t suffer to the same degree as the starving baby and her mother, but the pain and angst I suffer is no less real.

Another definition:

Cope: A verb, used without object: 1) to struggle or deal, especially on fairly even terms or with some degree of success (usually fol. by with): I will try to cope with his rudeness. 2) to face and deal with responsibilities, problems, or difficulties, esp. successfully or in a calm or adequate manner: After his breakdown he couldn’t cope any longer.

A verb, used with object: British Informal. to cope with.

I suffer (feel pain) from rheumatoid arthritis; I cope (wrestle, strive, persevere) with the pain and disability it causes.

It will probably take me some time to shrug off guilt for referring to myself as “suffering.” But I’m going to work on it. There’s no reason to feel guilty about having RA, and certainly no reason to be guilty for using the best word to describe what it does to me.

As for “my rheumatoid arthritis:” For many years now I’ve understood the phrase to imply ownership of the object. It’s my house. My coat. My pencil. My dog. My RA. You get my drift, here. I’ve resisted using it because, hey, I don’t own RA. I didn’t ask for it. I never wanted it. If I’d been asked, I’d have said “No thanks! Keep it!” And even after all these years of suffering with it, I’d gladly trash rheuma in a heartbeat. I’d leave it, walk away from it, never think of it again. I don’t love it and I feel no attachment to it. It’s not mine!

(If you’re imagining a child throwing a screaming tantrum just about now, you’re spot on.)

But to be honest, rheumatoid arthritis is mine. Whether I like it or not, whether I want to admit it or not, RA is part of me. It’s mine, just like my hands and toes are mine. Like my heart is mine. Rheuma is a part of my body and how it works, which is unfortunately just a bit off.  

A bit cracked, like the rest of me.

As I’ve written about my individual, personal experience with the disease, I’ve done some pretty impressive mental contortions trying to avoid sentences that imply RA is mine. I’ll call it the rheumatoid arthritis, or just RA, no modifier, as if it’s a separate entity. I’m wrong, though. It’s not separate. Rheuma can only exist as a part of me and as a part of other people like me who suffer and cope with it. It’s a function of our confused autoimmune systems.

I’m going to quit fighting the semantics of rheumatoid arthritis. I’m facing up to it. I have RA. My RA often attacks my hands and wrists. It sometimes attacks other joints in my body. It frequently makes me extraordinarily tired, and it is sometimes exquisitely painful. I suffer from it, but I cope. And not only that – I battle it and fight it and persevere and push on through it and deal with it and hate it and abhor it.

And I strive for dignity and gentle, defiant grace in the face of my RA. In the end, I’m no different from any other suffering human being, regardless of degree or location or illness or status. Why waste my energy trying to pretend otherwise?

Water hot

They have lovely bathtubs in Germany. They’re at least twice as deep as a standard American bathtub; the side of the one I had in my flat was as a bit higher than my knees when I stepped into it. After living there and experiencing the true, deep comfort of soaking in hot water literally up to my neck, I was spoiled. The old American bathtub, no deeper than mid-calf, just didn’t cut it.

And that’s why I had the bathtub in my main bathroom removed and replaced with a double-sized shower back in 2003. I hardly ever used that shallow, disappointing bathtub. The water always cooled off too fast (and our hot water heater only held enough water to fill the tub once), If that wasn’t bad enough, I could only submerge my entire body by laying flat on my back with knees bent because the tub was also too short. I’m only 5 feet and 4 inches tall. The submerged part of me would be nice and warm for two or three minutes, but my legs froze.

So phooey. Just get rid of the silly thing, I thought. You love a hot shower. And a nice, big shower stall with pretty ceramic tiles and a rain-shower type spray will be just fine. Add an on-demand, tankless water heater for an unlimited supply of hot water, and that shower would be perfect.

And so it was done.

It’s important at this point to note that, as of that year, I’d had almost no RA symptoms for roughly six years. I’d gotten used to living a normal life – meaning a life without chronic pain. I thought less and less often about the dreadful rheuma years, 1987 to 1997, until finally I just didn’t think about them any more at all.  See, I tucked my rheumatoid arthritis neatly into a box labeled “THE PAST,” strapped it up with duct tape and relegated it without ceremony or a backwards glance to a random, dusty attic closet in my mind.

Of course, the sneaky rheuma was still there, and it was busily chewing an escape hole in the box. But as far as I was concerned, it was “gone.” I was in “remission.” If I was lucky, I’d never have to face the disease again.

Fast forward to today.

Rheuma’s been out of the box for a couple of years now. Almost daily I remember that lovely deep bathtub in my German flat. I’d pour a couple of capfuls of Kniepp Rheumabad into the hot water, which mysteriously made the heat sink even deeper into my aching joints. There were times when getting into and out of the bath was dicey, but once in, ohhh my. It was worth it.

Now I have a shower.  It’s still spacious. I still love the earth-and-forest colored tiles. I absolutely love love love the on-demand hot water. But beyond all that, the drawbacks to a shower vs. a bath when I’m in the depths of a rheuma flare are obvious. Why didn’t I consider the return of the disease, the return of that deep, nerve jangling joint pain that a deep bathtub could sooth, if not actually relieve? I really, really wanted to believe that I’d never have to deal with it again. I was in denial.

So now I’m tentatively exploring the possibility of putting a tub back into that space. I should be able to keep my pretty tiles, I think. Any tub I get, though, can’t be one of those silly shallow American fiberglass things. It wouldn’t be worth the trouble. So I’ve been looking at those step-in tubs, the ones with doors on the sides and a built-in seat. They come with hydrotherapy jets and even thermostats to keep the water at an even temperature. And they’re deep. I could sit in water up to my neck again if I scrunched down just a wee bit.

That sounds absolutely heavenly. But the cost may be way out of my league. So even a plain old bathtub, as long as it’s deep, will do. I’m checking into both kinds. I really need a bath.

Now for the downside.

By now you know that I love winter and snow. I grew up here in Northern California, so the only explanation I can come up with for this aberrant behavior is that my maternal grandmother was a full-blooded Finn. Her parents immigrated to Saskatchewan, Canada from Finland in the late 1800s and she, once she was grown up, married a dapper American fellow and went to live with him in Idaho. The rest is history. Well, my family history, at least.

Finland is a cold country in the far north of the world. Snow and ice are part of the normal landscape, as are evergreen trees and frozen lakes. Think reindeer, fur parkas and mukluks.

It’s clear as a bell outside today. My immediate world has been transformed into a beautiful but alien landscape. It’s bitter cold – 15 degrees, according to the outside thermometer, and the forecast says we might reach 40 degrees for a high. But I’m inside, the fire is burning merrily in the wood stove, there’s plenty of firewood to hand, and I’m comfortable. Even my hands are giving me a break this morning.

But there are drawbacks to this cold, Finland-like weather. The county snowplows have not made it to our street yet. They’ve been extraordinarily busy – this storm dumped nearly a foot of snow eight miles down the mountain in Placerville, and even the valley had an inch or two of snow, which is rare as hen’s teeth. The plows have been kept occupied on the highway between Placerville and Lake Tahoe, and on the main thoroughfares around the county. Our little street is fairly low on their priority list.

And because they haven’t plowed, I can’t drive my car. Eighteen inches of snow is too much for a little sedan, even equipped with snow chains, assuming I could wrestle them onto the tires with my persnickety hands while on my persnickety knees in the snow.

But before I could even attempt that, I’d have to shovel the car out. At the moment, it’s up to its wheel wells in snow and totally covered over, a soft white lump along the side of the road. Once the snow around it is cleared from around it, I’d still have to scrape it off the rest of the car. All 18 inches.

 The very thought of this last task – inevitable if I truly need to go anywhere in the next day or two – makes me groan.

And to that end I’ve had to make a call this morning, cancelling my appointment down at the VA medical center in Sacramento for a bone density scan. And, because I don’t know for sure that the county snowplows will make it today, I had to cancel my first physical therapy appointment, which was for tomorrow, as well. Now I need to reschedule both.

When it started snowing the other day, I didn’t believe we’d get more than three or four inches. We’ve rarely had more than that at any time in the 12 years we’ve lived here. With the forecast for the week predicting sun today and tomorrow, I figured the snow would be melting away by the time I needed to leave for the bone scan appointment, and that it would be gone by tomorrow. No problem going to the PT appointment either.

But with as cold as it is, and given the sheer amount of snow that needs to melt by 8 a.m. tomorrow, there’s just no possibility.

Oh, well. It’s still breathtakingly beautiful outside. Everything looks covered in soft mounds of sugar-sparkled whipped cream. The sky is gorgeous. Life is good.

My heroes

I was thinking I’d need to shovel a path to the woodpile and the World myself, but Cary and Matt beat me to it. With my sore hands, the chore would have been pretty miserable. My daughter and her sweetie are my heroes.

Update: It’s dark out. Sky is clear, stars like sparkling pinpricks in the night sky. The final, official, inch-count from the National Weather Service: 18 inches of snow in Camino, CA. 

I ended up going out and shoveling snow anyway this afternoon. I wanted to be outside. I wanted to feel the sharp, cold air against my skin and use my muscles. So I shoveled the snow away from the woodpile and then along the front walk and around to the back patio. Took me about an hour and a half, and while my hands hurt while I worked, it was bearable. And tonight, they’re not half bad. Sore, sure. But they always are. I feel good.

Be careful what you wish for …

I just gotta say that this is the very first time that the National Weather Service, which regularly issues Severe Weather Alerts over rain, was totally, completely, entirely accurate. To wit:

“MAIN IMPACT: STORM TOTAL SNOWFALL ACCUMULATION OF 6 TO 16 INCHES FOR THE FOOTHILLS WITH LOCALLY HIGHER AMOUNTS WITH 2 TO 3 FEET LIKELY ABOVE 3000 FEET FOR THE WEST SLOPES OF THE NORTHERN SIERRA.”

I just whipped out my handy-dandy 13-inch plastic 1980s-era U.S. Army ruler, turned the porch light on and stuck it into the snow on the cement walk in front of the house. It disappeared an inch or so beneath the surface.

And it’s still snowing.

My little house sits at roughly 3,200 feet on those West Slopes. And this is, in the 12 years I’ve lived here, the very first time we’ve had more than oh, five inches of snow accumulating during one single storm. In fact, it’s more than we’ve had accumulate here during several days of storms.

My family is still asleep. Given my enthusiasm yesterday over the prospect of an “I’m dreaming of a white Christmas” snowfall, they may well murder me when they arise and look out the windows.

The poor dog boinged out the door to take his morning  constitutional and sank into snow up to his shoulders. He stopped dead and looked back at me, standing in the doorway, turned around and slinked back inside.

His whole being communicated “I can wait.”

… a little later …

 My daughter got up. “Holy s**t, Mom,” she said, as if I’d had something to do with the whipped cream world outside the windows. As it was obvious she was not driving down to Placerville for work anytime soon, she texted her boss to let him know her ETA was uncertain at best. He texted back that their power was out at the newspaper building and that the whole town has a foot of snow, so he was pretty uncertain about the prospect of anyone getting there, at least until much later in the day.

In reality, Cary loves the snow as much as I do. She’s delighted. “I can’t wait to get a picture of my “ice Cube,” she said, referring to her new Nissan Cube, currently parked up at street level under 14 inches of snow and counting. “I sorta wonder how I’m going to get up there, though.”

“It’s powder, kiddo. You can just push through it.”

“I bet it’s slippery, though.” She was thinking of the steep slope of the driveway.

“Yeah, but if you fall down, it won’t hurt. You’ll just floof.”

She laughed. I laughed. The lights flickered.

We both went still. “Stay on,” I breathed.

They did.

I doubt she’ll be getting down to work today, even if it stops snowing in the next hour or so. There’s just about always traffic noise rising up the mountainside from Highway 50, a quarter-mile or so away. Not this morning. It’s as silent as a pristine, snowy alpine morning out there (which is what it is, of course). That means the snow plows have been overwhelmed. No traffic is going up or down the mountain. And until they get the highway cleared, they won’t bother with the surface roads. And until they get those cleared, they won’t bother with residential streets, like ours.

It’s just as well. Cary has never driven in snow before. She only just bought chains (on my insistence) on Saturday. Of course, chains wouldn’t matter in snow like this. What we need is a snowmobile.

 … later still …

 It’s still snowing. Anybody have a St. Bernard handy?

Early Sierra snow

The first snow of the season is falling here at Wren’s Nest, 53 miles west of Lake Tahoe in the Northern California Sierra mountains. It’s a little odd because it seems like just a few days ago it was sunny and the temps were in the low 60s. Sky was blue, not many clouds, the trees were looking glorious in their autumn raiment and I was starting to wonder, a little gloomily, if we were going to be “blessed” with yet another warmish, sunny California Christmas.

See, I like Christmas to look and feel like Christmas. I want to see snow outside my windows. I want to bundle up, go outside and build snow-people and throw snowballs for the dog (he loves leaping into the air, catching them and snapping his jaws, spraying snow out both sides of his mouth. It’s hilarious).

This is how much I love winter and snow: I was talking to my neighbor, Allison, last night about maybe going snowshoeing this winter. She’s never snow-shoed – neither have I – but we both want to try it. Even though we’re in our 50s and both of us have arthritis. I’ve done alpine and cross-country skiing. I loved the latter, though I only got to go once. It was on a brilliant, ice-cold, blue-skied day in the Harz Mountains of Germany, the year before the Wall came down. My friends and I were on a high, deserted back road, nothing but mountains and trees and sky for as far as the eye could see. And once I got the hang of the long, skinny skis and could stay upright, I shooshed along, hearing nothing but the wind in the trees and my own breath. It was extraordinary.

So after I got up this morning, I had a nice, hot bowl of oatmeal with applesauce and cinnamon mixed in and a cup of steamy hot coffee. A few minutes later, I looked outside. The wind was gusting; dead leaves were flying around and there was frost on the hedgerow. Allison called; she asked if I’d come over and spot her on the ladder while she climbed up onto her roof. She wanted to cover the vent that brings fresh air into her garage, where her dogs shelter from the weather. It was way too cold in there. So I put on my scarf, hat, coat and gloves and went over. As she was doing the chore, we were both exclaiming over how truly cold it was.

This is California. Yes, we’re up at 3,200 feet, but except for the deepest part of the winter, the cold season is fairly mild. It was around 10 a.m. and the thermometer had only just passed 30 degrees Fahrenheit. For us, this is cold.

When she was done, it was time to get my chores done. The firewood ring next to the wood stove needed replenished, so almost son-in-law Matt and I got busy on that. While we were out by the woodpile, it started graupeling.

Graupel is, for those of you who don’t know, tiny pellets of snow, like soft hail. I experienced it for the first time when I lived in Germany. It’s a pretty normal form of winter precipitation here; it usually precedes a snow storm. Matt opined that it might be smart to move the cars up to street level (our house sits at the bottom of a steep, sloped driveway).

I feel celebratory when it snows. I just put our Christmas tree up yesterday, so the holidays have arrived at Wren’s Nest. With the poor economy, and me still out of work, it will be a meager Christmas present year, but that’s not important. What is, is that we’re together, we’ve got a warm fire, a full pantry and plenty of warm clothes and blankets. We’re cozy. And we’ll be fine.

I decided that given how cold it was, I’d make a nice hot, rich soup. My daughter loves my Hungarian “goulash” soup, made with chunks of lamb and thick with vegetables and potatoes, so that’s what I made. Mr Wren helped with the chopping; after dealing with the fire wood, my hands were yelling at me.

And now, it’s done. It’s dusk. It’s been graupeling and snowing off and on all afternoon; the weather forecast is for lots of snow and wind tonight and overnight, into tomorrow. They’re saying we could get from 6 to 18 inches of snow. That’s just amazing for this early in the season, and since we’ve been under drought conditions for three years now, it would be wonderful, especially if this early storm dumps three or four feet higher up in the mountains. As long as that doesn’t melt and it keeps snowing frequently, perhaps our drought will be broken this season. I do hope so.

All that’s left to do now is put Bing Crosby’s Christmas album on the stereo and then duck as my family groans and start throwing things at me.

Thoughts of the meandering type

I’m up early-early after sleeping not-so-well. I took Tylenol PM last night, as I have the last three, but this time it didn’t work even a little. So I saw each hour on the clock, waking in annoyance from image-and-thought-crowded dozes to wide-blinking-awakeness as I flexed my throbbing, gravel-filled digits and wished for hands less demanding of my complete attention.

The single, bed-time Elavil tablet my rheumatologist prescribed – which I looked so forward to as a solution to the two a.m. ceiling stare – worked only half-heartedly and erratically to help me sleep. But it worked enthusiastically to increase my appetite. This is aggravating. I don’t need help with my appetite; in fact, I’ve only just this year gotten the beast under control after a lifetime of bad eating habits. To suddenly crave buttery Ritz crackers, salty-crunchy tortilla chips and sweet slice after slice of Thanksgiving spice cake with fresh whipped cream – and to mindlessly indulge the craving – is to look away as Doom creeps in the back door, quiet, breathing the rancid-sweet breath of the ketosis-plagued diabetic.

Bleh. I’ve shoved the evil Elavil to the back of my pill cabinet (yes, I have one, to my chagrin) and put ranks of vitamin and supplement bottles in front of it. I’d rather lose sleep than regain those hard-lost pounds. Besides, I gave all my fat clothes to the local hospice thrift store. My wardrobe consists now only of lesser sizes. I like them.

 ******

 Yesterday Mr Wren and I took a ride down the mountain to Home Depot. The reason? To buy door levers. Our house is currently equipped with nice, small, round, ubiquitous doorknobs. I’ve never given them much thought. But with my hands in a seemingly endless flare, it hurts like a _________ (fill in the appropriate curse) every time I open a door. My right hand protests loudly at grasping the knob and then shrieks when I twist. The result is me standing in front of the still-closed door, clutching my angry hand to my chest as I turn the air around me blue. And sometimes, the door does not open.

This is not good.

When I told Mr Wren that I wanted to change all the doorknobs in the house to levers (and this after 12 years during which the knobs did the job just dandy), he didn’t even blink. Off we went.

After perusing the door-paraphernalia aisle and exclaiming in dismay over the stunning prices, we bought five “brushed antique” door levers. Two with deadbolts for the front and back entry doors, and three with thumb locks for the bedrooms and bathroom. That leaves one bedroom and one bathroom still to change out, but as I don’t use either of them very often, they can wait for their levers. If I need to get into one or the other, I’ll either grit my teeth or holler politely for assistance.

The hard part will be the actual removal of the old knobs and installation of the new levers. Mr Wren will do his best to procrastinate this unpleasant task until Hell freezes over, but I can’t wait that long. I’m going to give it a try myself today. And if I can’t do it, then perhaps Matt will come to my rescue. One way or another, I’m going to be able to open doors with my elbows if I need to before the day is out.

 ******

 It took its sweet time arriving, but early winter (such as it is) has tentatively arrived here in the California mountains. The daytime temps are just reaching the mid-50s; nights are down into the mid-30s. I realize that for most people, these temperatures are downright balmy for this time of year, so I have no right to complain. And I’m not. I like the cool weather. In fact, I live through the warm springs and sizzling summers dreaming of the chill breezes of late fall and the hard frosts of winter. Over the next three months or so we’ll have some snow – more than a little, if we’re lucky – and plenty of rain, also if we’re lucky. I know this sounds perverse to those of you who dread the cold and damp of winter because of rheuma or simply out of preference. But along with the fact that California’s well into its Third Official Year of drought conditions (more like five years, if you ask me), I just prefer bundling up to stay warm to stripping down to stay cool. I like wearing sweaters and thick socks. I adore hot soup – the aroma as it cooks and the flavor when I eat it. I love working and playing outside in the cold so I can go inside and warm my hands and backside at the living room wood stove. I love the way snow transforms the world and the sound rain makes when it spats against windows and drums on the roof.

Yeah, I’m cracked. So what’s new?