Distraction and pain

How do you handle pain?

There are so many variables. Is the pain subtle? Is it sudden? Continuous? One or two on the silly 1-10 “pain scale” or is it a twelve and heading into the stratosphere? Are you at home or at work? Able to stop everything and focus on dealing with it, or must you somehow keep on working? Have you slept well, or not? Do you have tools you use to help you mitigate the pain (a paraffin bath, heat or cold packs, compression gloves and splints, a TENS unit, painkilling medications)? Is the weather a factor? Does cold make you cry? How about humidity?

Another variable is how we, as individuals, perceive pain. My “bearable” pain may be your “terrible” pain, and vice versa.

It’s no wonder that doctors cringe when someone with chronic pain shows up in their exam room or ER asking (begging) for temporary relief in the form of narcotic analgesics. They’re a whole ‘nother problem that many of us would prefer not to evoke.

Before the rheuma dragon made his den in my wrists and hands, I was often able to distract myself from even severe RA pain by reading a book, watching a good movie, losing myself in my work, or writing. It’s a mind-trick, is distraction. Writing was my favorite method. Like most artists, even when pain was present in my knee or foot or shoulder, I could disassociate myself from it by “falling into the page.” In the corporeal world, time passed, but it was suspended for a while when I away, visiting the world of my imagination. I took a certain amount of pride in the ability to do this.

It’s become much more difficult for me lately, though, since the dragon now lives in my hands. Most days he merely nips at my joints. My right pointer finger might be swollen and a little sore, but the other joints are quiet. Or my wrists might ache, but if I put on my wrist splints, he can’t hurt me as much. I’m never sure from day to day which part of my hands he might choose to attack or how tenacious he’ll be, or how savage, but the meds I’m taking seem to make him fairly sleepy and slow most of the time. I’m very grateful.

Here’s the thing, though. To slip into the page, I must use my wrists, hands and fingers as the conduit between my imagination and the glowing computer screen. Keyboarding, even though it takes far less pressure on the keys than an old fashioned typewriter did (yay technology!), can still hurt a lot when the dragon is awake and snarling. I’ve not quite mastered this particular form of distraction when the pain is random in focus and intensity – and manifests itself only in the joints at the end of my arms.

I’ve considered trying voice-activated writing software for my computer, but that particular technology is still an unsteady toddler who frequently falls on its butt and throws tantrums. With all its glitches, using it to shift my consciousness “into the page” sounds maddening. In addition, I’m fairly intimidated by the idea of translating my imagination into the spoken word before it appears as letters and symbols, rather than the reverse. I can’t help but wonder about the tedium that would follow as I edit and rearrange my thoughts into something resembling coherence. And of course, that would require keyboarding by hand again, which sort of negates the whole point.

In the meantime, I’ll just keep on keeping on, even as RA forces me to write less than I’d like.

Living and working with RA continues to be a challenge. How do you “distract yourself” from pain?

Update: Thanks to everyone who told me they hoped I’d feel better soon, but actually, I’m feeling pretty good overall, just a bit frustrated when I can’t do everything I want to do, like just about everyone else who reads my blog. I wrote this post because I wondered how the rest of you handle your pain on a day-to-day basis, and I hoped that your comments would give us all some useful ideas. Thanks for reading!


“Disbelief in the existence or reality of a thing.” That’s one of the definitions of “denial,” according to Dictionary.com. My old Merriam Webster’s Collegiate Dictionary adds, “negation of logic,” and “psychological defense mechanism in which confrontation with a personal problem or with reality is avoided by denying the existence of the problem or reality.”

It’s something that many of us who have rheumatoid arthritis know rather well; I’ve not only read the word “denial” or actions that imply it regarding the symptoms of RA on several blogs written by sufferers recently, I’ve mentioned it myself. We don’t want to believe in RA; or rather, we don’t want to believe that we have it.

Another common theme is the hope for “remission.” Here’s Dictionary.com again: “a. a temporary or permanent decrease or subsidence of manifestations of a disease.

“b. a period during which such a decrease or subsidence occurs: The patient’s leukemia was in remission.”

It’s almost as if we’re in conflict with ourselves. On the one hand, we do all we can to deny to others (and to ourselves) that we actually have rheumatoid arthritis. On the other, we hope for and dream of the day the medicines work or that through our own hard efforts to eat carefully and take great care of our bodies, we can change our internal physiological environment and make it so uncomfortable for RA to thrive that it shuts down and leaves us alone. We long for our disease to be thrown into remission.

But what is this, really? What am I trying to prove?

know I have RA. Dang, I’ve had RA for 22 years now. I have a very solid diagnosis, even though my disease doesn’t necessarily look or act like yours. For example, I have very little joint destruction and, at the moment I write this (it could always change), I have pain that is generally centered only in my wrists and hands. It hurts like a you-know-what sometimes, but mostly I can grit my teeth and bear it. My RA rarely disables me.

But that’s right now. This moment. In the past, my hands have been so stiff and the pain so intense that I couldn’t get a door open or pull up my drawers after a trip to the powder room. I’ve had times when I couldn’t bear to put my weight down on one foot or the other. I’ve been forced to use a cane to walk, and more than once I’ve had to swing along on crutches for weeks at a time. My shoulders have flared so painfully in the past that I had to have help getting dressed. “Gimp” has been my middle name. Forget “Grace.”

This is simply the truth. Most of you who’re reading this know exactly what I’m talking about. You’re probably rubbing your fingers gently in empathy without even realizing it.

And yet I will go out of my way to hide my pain. I will force myself through tasks that cause me agony (folding laundry or taking the cap off the jam jar). I’ve gone hikingwith a flared foot or knee or shoulder or hand. I’ve gone on 20 km bike rides, or stood in long, long lines at the grocery store on feet that feel like someone’s been beating them with baseball bats. My feet have throbbed so intensely with my heartbeat that I’ve had to shift back and forth on them like a child who desperately needs the bathroom.

I’ve had pain and times of disability so intense that I simply broke down and cried. This is big deal for me, because I’m one of those people who, by nature or nurture, has always been calm and stoical. It takes a hell of a lot to bring me to tears. But rheumatoid arthritis has done it many times over the years.

So why do I keep trying to hide my disease from others? Is it denial? Do I simply not want to believe that I actually have RA?

Well sure, that’s part of it. I don’t want to be sick. Surely, I don’t want to have a disease that’s not only incurable, it may also eventually twist my hands and feet into ugly, misshapen, useless knots, disabling me to the point of having to get around in a wheelchair and depend on others for even the most basic tasks in life. I don’t want to have a disease that may, along with the above destruction, also rob me of my voice or my eyesight, or even my hearing. I dread having a disease that might do all of those things to me — and then turn around and ruin my heart or my lungs and kill me, too. So long, world. It’s been nice…

I do not want to believe I have a disease that can wreak such havoc on my body. But I do have it. That’s my reality.

So I accept it. No choice. But I’m not disabled yet, so I do what I can to keep my pain to myself. Because I never know from one day to the next – hell, from one moment to the next – which joint or joints the rheuma dragon is going to attack, and because I have days when he just teases me and lets me get on with things without much trouble, my friends and family and acquaintances are used to me being able to function normally a good deal of the time. Naturally it takes them off guard when I suddenly can’t lift that sack of groceries or cut my own meat. Of course they’re surprised when I have to beg off an outing we’ve been looking forward to because my foot has flared or because I simply can’t face gripping a steering wheel, or lifting a fork to my mouth at a restaurant, or sit still for two hours in a movie theater seat while my hip feels like it’s in the midst of being dislocated from my pelvis. They’re disappointed in me because I was just fine a few days or even a few hours ago.

And being like that embarrasses and humiliates me. So I try to hide my pain. Just bull on through. Keep smiling even though inside I’m moaning with agony and my face is a death-mask. I’m tough. I don’t want to give in to my RA; I don’t want to let myself be disabled and more than anything else, I don’t want others – my friends, my family and my acquaintances – to think I’m a weakling, an attention-seeker and worst of all, a hypochondriac. Because they do think that of me even if they don’t mean to. And I hate it.

Is that denial? You tell me.

As for remission: I know it can happen because it happened to me. I’m one of those lucky few whose RA really did snooze off for several years. From 1998 to 2005, to be exact. During that time I almost but not quite forgot I had rheumatoid arthritis. My memories of the bad old days were still crystal clear, though, so whenever I’d feel a little twinge in a great toe or a hip or a wrist or shoulder, I’d brace myself automatically and mentally prepare for the dragon to bite into me with his wicked sharp teeth and pit-bull jaws. But with only a couple of exceptions, those twinges never became more than twinges while I was in remission. I can’t describe the depth of my relief or my gratefulness.

I’ll be honest: I pushed myself to forget my RA. I was superstitious about it. I was terrified that if I thought about it too much, I might give it shape and mass and make it real again. And oh, I didn’t want that.

So it’s OK to hope and dream for remission. In fact, that hope keeps us going, I think, because we know it really can happen. Maybe only a small percentage of those of us who have RA will ever experience remission, but so what? It happened for me; perhaps it will happen for you.

Can denying RA make it worse?

I believe it can if we’re so determined to deny it that we don’t take care of ourselves and do the things we must do to fight it. If I don’t take my meds, or you aren’t careful about what you eat (if that’s the treatment for RA that you’re using), then chances are, we’ll get worse. If I deny my pain and force myself to do things that cause me more pain and fatigue, or that actually injure my inflamed joints, then yes, my RA may get worse.

So there is logic and virtue in admitting to myself and to others that there are times when I just can’t do it all. If my friends can’t accept that, then I should probably wonder just how much they really do care about me. If my family can’t accept it, then perhaps I need to educate them better about RA. If my co-workers can’t accept it, then other than try to educate them, too, there’s not much I can do about it. I can’t change other people. I can only change myself.

Having RA teaches us deep lessons about humility and inner-strength. I know – we know – that the pain, the threat of disfigurement and disability are dreadfully real. I also know that I’m not going to let the damned rheuma dragon take my joy in life away from me. I’m going to keep doing as much as I can, as mindfully as I can, to slow the progress of this disease and mitigate the damage it can do. I’m not going to let others shape how I feel about myself, because I know I’m strong, and I know that I’m not trolling for sympathy and attention if I ask for help. I know I’m not a hypochondriac.

I just have rheumatoid arthritis. If a little denial and a lot of hope help me cope with it and live my allotted time on this old Earth with joy and laughter, they can’t be all bad.

What did I do?!

How did you first discover there might be something wrong with your health?

For me, it took about 8 months of thinking I was accidently injuring myself in various places, as if I was somehow banging into things with my knees or sleeping wrong on my shoulders and hands. It happened over and over again. Sometimes the pain was bad, sometimes it wasn’t. Sometimes it lasted for just a few hours, others several days.

Because I’d never in my life had any part of my body hurt for no good reason, it never occurred to me that I might have a disease. I was very healthy. In retrospect, the pain I quietly endured from rheumatoid arthritis in the months before I was diagnosed seems almost surreal. I had somehow turned into a klutz, hurting myself frequently without even noticing until something started hurting.

And then came the event that compelled me to finally make an appointment with a doctor at the U.S. Army Hospital in Bremerhaven, Germany, where I was living with my U.S. Air Force husband and my 5-year-old daughter.

I’d landed a job as a Department of Defense illustrator at the U.S. Army post, working for the Army’s Morale, Welfare and Recreation Department. They sent me to a two-day marketing conference in Frankfurt not long after I was hired. I chose not to drive – my Autobahn skills were still pretty shaky and I wasn’t comfortable driving 90-100 mph – but I absolutely loved traveling by train.

Now, at this point I’d only been in-country about six months and I hadn’t quite got the hang of the train schedules (which were in German, naturally). My mastery of the language was pitiful. Undaunted, I set off on the morning of my journey with great confidence, taking the city bus from my flat in Lehe to the big Bahnhof in downtown Bremerhaven. It was mid-March and icy cold. Bremerhaven sits at the mouth of the Weser River, which opens into the North Sea. Snow was rare, but I was to learn that bitterly cold rain, wild maritime winds filled with sleet and slick, icy cobbled streets were the norm from early autumn through late spring.

I‘d dressed up for my journey in a calf-length skirt and a warm sweater over a blouse (I’d learned quickly about layering for the weather), and I wore a pair of comfortable black pumps with 2-inch heels that I’d had for several years. But as I boarded the train, my right foot suddenly began to hurt. The pain was sharp, originated at the base of my large toe and radiated across and up my foot. What in the world did I do to myself this time? I wondered. Had I stubbed my toe somehow? Twisted it funny? I had no idea, but the pain was intense. Well, there was nothing to be done. I tried to ignore it.

Forty-five minutes later, I had to change trains in the much larger Bremen Bahnhof. There wasn’t much time, so in spite of my difficulty with reading the German train schedules, I found my train and lugging my suitcase, a shoulder bag and my purse, limped as fast as I could to the proper platform and boarded. I found an empty berth and, my suitcase stowed, took a window seat and settled down for the journey. I was excited! I hadn’t done much traveling on my own since we’d arrived in Germany, so this was a real adventure. As the train started rolling and gained speed, the car gently rocking and wheels clacketty-clacking, I felt like a character in an old Helen McInnes espionage novel. I was in Germany! About to cross the country from north to south on a train! It was like a dream come true.

Before long I was joined in the berth by several other travelers. One of them, a young German businessman, sat next to me and, in the pleasant way of all the Europeans I met over the years, offered me a polite good day and a smile. I returned it in my much-practiced German (my pronunciation was good – I’ve always had a knack for mimicking accents), but I outing myself as an American a moment later when he said something else. I had no idea what he’d just said, so I had to come clean and admit I was only just learning German and that I couldn’t speak it very well yet.

He laughed and asked if we might, then, speak in English so he could practice. Since WWII, just about all West German children had been required to learn English in school, and while their mastery of the language varied, I met few Germans who didn’t at least try. For their part, they were always pleased that I was at least trying to learn to speak German (something that few Americans, I’m sorry to say, did). They almost always complimented my efforts and encouraged me.

So we talked a little, as strangers do. I don’t recall now what business he was in – I want to say it was something to do with computers – and in return told him I was working as a civilian for the U.S. Army. He asked what my destination was.

“Frankfurt,” I said.

He gazed at me, eyebrows raised.

Uh-oh, I thought. What did I say?

“But this train is for Munich,” he said. “I think you are being on the wrong train.”

I wanted to die right there. How embarrassing! And now what? I’m on the wrong train … I asked him, blushing furiously, what I could do. Would they stop it and put me off on the side of the tracks? I thought wildly. Would I have to buy a second ticket out of my meager funds? And if I did, how was I going to pay for my hotel that night?

My new friend told me not to worry, that when the conductor came, he’d explain what had happened. He was sure that things could be put right, as the train was making a number of stops along the way and there were others that I should be able to catch that would take me where I wanted to go.

When the conductor arrived to punch our tickets, the businessman did, indeed, explain my predicament. The conductor laughed, shook his head and in halting English told me that he’d come and get me after a while. He’d have me get off at an upcoming station, and from there I could catch another train for Frankfurt. My journey would be delayed, of course, but that couldn’t be helped. So I settled back into my seat and thanked my traveling companion for his help. Nice man, he was. He got off the train a couple of stops further down the line and wished me good luck.

And that’s how, several hours later, I found myself standing outside in the bitter cold on the platform of a minuscule, closed-for-the-night Bahnhof on the outskirts of a tiny village in middle-of-nowhere West Germany. After dark. With my right foot now so painful I could barely put my weight on it. And I still had no idea how what I’d done to it.

The conductor, when he’d escorted me off the Munich train, had assured me that another was coming soon and that it would stop for me and take me on to Frankfurt. Feeling deeply foolish but with no other choice but to trust him, I sat on my suitcase on the open platform, shivering in the gusty, ice-needle wind and berated myself for not asking someone back at the Bremen Bahnhot for help with the schedule. I learned a valuable lesson that day, one that compelled me from that time forward to put aside my pride and shyness when I traveled and just ask for help.

After nearly an hour – I was turning into a Popsicle – another train rolled up. From a car near the end a conductor leaned out the door, and as the car approached the platform, he grinned hugely and said, “Amerikaneren?”

Face flaming, I pasted on a smile and said, “Ja …”

He jumped off as the train stopped and helped me aboard, taking my suitcase and escorting me to a nice, warm berth, where he stowed my case and punched my ticket. His English was pretty good, so I asked how he’d known I was an American. He said, still grinning, that the conductor on the Munich train had radioed and told them I would be waiting at this tiny station, that I was a confused and slightly lost American, and that I’d … ahem … made a little mistake and boarded the wrong train. But now, my troubles were over. He wished me a pleasant journey and left me alone.

I finally arrived in Frankfurt, but much, much later than I’d planned. It was nearly 10 p.m. I found a taxi at the Bahnhof, gave the driver the name and address of the hotel I’d booked, and found myself a few minutes later standing in the lobby. It was a very small, ancient building that was sandwiched in between a row of ancient others. The lobby looked like it hadn’t been redecorated since 1935 and had that odd, musty, damp smell many very old buildings in Europe have. It was like standing in the middle of a vintage black-and-white movie. The man at the desk was ancient, too. An octogenarian, he was dressed quite formally in an old-fashioned, charcoal three-piece suit with shiny elbows and a narrow black tie. He looked like a funeral director.

“Ich habe ein Zimmer,” I said, too exhausted now to worry about correct grammar and pronunciation. Fortunately, he found my name in his book, and after I filled out the form and showed him my passport, he took a key out of a slot in a wall cubby behind the desk. And then, with great dignity and solemnity, he lifted my suitcase and led me up an incredibly steep, narrow, enclosed staircase to my room and softly wished me a good night.

It was shaped like a long, skinny triangle, with the door at the narrowest point and a window at the widest. If I stood at the widest end, I could stretch out my arms and touch both walls. In America, a room this small would be a broom closet. In Frankfurt, it was just 40 Deutschmarks per night, and was equipped with a narrow single bed, a washbasin, a little dresser and a small table and chair beneath the window that looked out over the dark, freezing, cobbled street. It was very warm, though, and I was incredibly grateful to finally be able to relax. I changed into my nightclothes and studied my now grossly swollen, bright red big toe. It looked like I had sprained or broken it, but I knew I hadn’t injured myself. I was just baffled.

By the next morning, my left shoulder and right hand had joined my toe in throbbing and aching for absolutely no reason I could think of. I had a quick, mostly hot shower (feeding the hot water meter with coins) in the communal bathroom down the hall and got dressed with some difficulty, since the shoulder was so sore. I’d been able to arrange a room on the Army post where the conference was being held for that night, so with a little sadness (I’d have liked to stay a little longer), I checked out of my little pre-WWII hotel.

I can remember little of the conference itself, unfortunately. What I do remember is that I had to hump that heavy suitcase, on foot, all over that post before finally finding my new room. I was in such pain that I was close to tears. I had aspirin with me, and I took it, but it had no effect. But I said nothing, and as I sat through the speakers and various events, I could barely take notes because my hand and fingers were hurting so badly. To top it all off, my room in the transient hotel on the Army post was perfectly dismal. I wished I’d kept my room at the little old hotel, but this was more convenient for the conference.

I don’t remember the return trip at all. Isn’t that a shame? I was in so much pain. Once I got home I made an appointment to see a doctor. A month or so later, I had a diagnosis of rheumatoid arthritis and prescriptions for naprosyn and Tylenol-3. My long Rheuma journey had begun.

Chicken little

This is a post I wrote about keeping chickens a couple of years ago. I’m posting it today because I can’t think of anything else to write about. And because I got bored and was reading back, and it got me chuckling. Ahhh memories …

As some of you know if you’ve been reading my blog, Mr. Wren and I keep chickens. We have five, and all of them are chubby Rhode Island Red hens. Each of The Girls produces a big, delicious brown egg with a startled cackle once a day during the laying season. They give us far more eggs than we could ever hope to eat by ourselves, so our family, friends and neighbors share in the largess. Smiles abound.

While we don’t have a rooster now, we used to. It wasn’t intentional. Mr. Wren brought six adorable, fuzzy, yellow bantam chicks home one day from the feed store, where he’d gone to buy dog food. Hey, when you live in the country, you don’t buy your dog food at the supermarket, silly. You get it from the feed store like all the other local yokels. It’s fun parkin’ next to all those pickups with the gun racks and watchin’ guys in plaid flannel shirts hawk globs of … whatever … on the dirty plank floor as they hitch up their drawers.

Anyway, Mr. Wren was assured by the bored feed store cashier that the chicks he was buying would all grow up to be hens. He didn’t plan to raise chickens but only to feed and nurture these six little cuties, give them a nice, long, comfy life and in return, enjoy their smallish eggs for breakfast.

They were supposed to be exotic Polish Something-or-Other Chickens, which Mr. Wren chose in a fit of snickering because of the silly-looking top-knots that would grow like mops on their heads when they were mature. Also, they supposedly laid green, pink and yellow pastel-colored eggs. Every day would be like Easter except no messy dye! What a kick in the pants!

Since they were Polish, he gave them Polish-like names. He named one of the little hens, who had a malformed schnozz, “Zbeaksky.”

As time passed we discovered that these chickens weren’t the Polish ones at all, but some of the names stuck.

We also discovered that one of the Not-Polish hens was actually a rooster, after his feathers grew in and he sprouted a magnificent tail and a deep red comb and wattles. With a perfectly straight face, Mr. Wren christened him “Zcocksky.”

It would be nice if that was the end of the differences between the male and female chicken-people, but noooo. This story drags on. Like men, roosters are from Mars. While hens cluck and chatter softly to one another as they scratch around for tasty bugs, roosters crow like maniacs. For those of you who’re barnyard-challenged, understand that this ear-splitting cockadoodle-doooooing does not only take place at dawn, but throughout the daylight hours and even, if the rooster is an insomniac, after dark. Roosters crow, in fact, whenever they damn-well decide to give voice, which is frequently.

Fortunately, living out in the country as we do, having a rooster with an amazingly overdeveloped set of pipes wasn’t the liability you might expect. After a while, we hardly noticed the racket, and if we did, it was a natural racket, at least. We’d just mutter “stupid rooster” and move on. The neighbors never said a word. Really, Zcocksky was much less disturbing than, say, a police helicopter with a spotlight hovering over your neighborhood at 3 a.m., like what happens down in the ‘burbs all the time. I’ll take the crowing rooster, thanks.

And their pipes aren’t the only aspect of roosters that tend to overdevelop. The other things which set them apart from their milder-mannered sisters are their spurs and their tendency toward truly bad manners. Before he grew spurs on his legs, Zcocksky was OK to be around. I could even say his name without bursting into laughter. He’d run up and try to peck my ankles now and then when I was out working in the sunny garden, but he wasn’t very serious and it was pretty funny.

Then he grew spurs and everything changed.

Since none of the chickens except Zcocksky and Zbeaksky were actually bantams, either, but regular-sized hens of a variety of types (the chicken-man in the John Deere cap saw Mr. Wren coming), poor Zcocksky was sorta size-challenged when it came to doing his roosterly duties. But what he couldn’t do in the sack he made up for in sheer, nasty, bad-tempered aggression. He pestered the hens and chased them around, running at them with his head low and his tail up. They’d flutter and cluck and trot off, then go back to ignoring him. So he started taking his irritation out on me.

Whenever I’d go out to the garden, he’d wait in ambush around the corner of the house. As soon as I passed, he’d come tearing out from his hiding place, his chicken feet going thump-thump-thump-thump-thump on the earth behind me. Then there’d be a terrible silence as he launched himself, spurs first, at my calves.

Now, understand that rooster spurs are wicked sharp, like spikes. I’m sure Zcocksky, nursing his small-rooster rage, honed his weapons to a razor’s edge every night while we slept. The idea of having him slash and mangle my legs with those things never much appealed to me, so the second I heard that ominous thumping I’d wheel around, shout and kick him before he could score. Thank goodness for all that kick-ball practice in grade school!

Sometimes my screech and turn was enough to stop his launch in mid-air, but often his momentum was too great and no matter how madly he flapped those silly short wings, he couldn’t abort the attack. In which case he’d encounter my foot, rising rapidly off the ground to meet him.

And then off he’d soar, squawking and flapping, lofted 15 feet down the garden path like a feathery soccer ball. While he was still in the air, I’d grab a rake or a hoe or anything else that could be used as a weapon and crouch, waiting, because as soon as he touched down, Zcocksky would be up again, shaking himself and running at me in his next attack. Sometimes it took three or four Soccer-Ball-Flights before he’d give up for a while to reassess his tactics.

All this time, of course, Mr. Wren was rolling around in the foxtails, laughing his ass off. Zcocksky sometimes took it into his pin-sized head to attempt an attack on him, but Mr. Wren is huge and could have easily drop-kicked him into the next county. Hell, one of his feet was bigger than the entire rooster. So mostly, Zcocksky left him alone, even though all his hens followed Mr. Wren around like rockstar groupies, cooing with excitement.

I’m sure that just steamed that poor rooster, whose ego was already battered. So Zcocksky saved his fury up for me. Once he caught his breath and regathered his few scattered marbles, he’d set up new ambushes. I’d be wandering around the garden, relaxed finally, plucking tomatoes off the vines and relieving the zucchini plants of their baseball-bat sized squashes. As any vegetable gardener can tell you, zucchini squashes grow from neat, tender, edible hand-length tasties to baseball-bat-sized, tough and inedible nearly overnight. If you don’t get them when they’re small, they’re really only good for rooster-bashing.

So imagine: There I am, innocently cutting a huge, prickly zucchini loose when I hear the dreaded thumping behind me that indicates Zcocksky making another kamikaze charge at the back of my knees. I have mere seconds to react. Using a move I learned from Bruce Willis in Die Hard XXIII, I wrench the massive zuke loose, spin and swing – and send that idiot Zcocksky flying backwards through the sky.

There’s a sort of beauty to this.

Now, you animal lovers out there are probably gasping and shaking your heads in disgust at my obvious disregard and hatred for this small chicken. Why, he could have been hurt!

Indeed. So could I have needed stitches in my ankles, so there. We could have kept Zcocksky locked in the pen, but we felt bad confining him and depriving him of all those nice, tasty bugs that were all over the garden. Plus, catching him wasn’t an easy thing to do, as you might imagine. So it was just war. He could have stopped trying to kill me anytime. I’d have easily called a truce. I might even have given him the best tomato worms when I found them, instead of to the closest hen. I might have changed his name!

Instead, I just took to wearing jeans and boots to protect my legs and ankles, even in the hot weather, and carrying a broken broom handle whenever I went to the garden, the better to bat Zcocksky with. It was just safer all around.

Zcocksky finally met his end when he somehow – and for reasons we’ll never know – got into the dog pen while we were at work. When they were out in the garden with us, the dogs never tried to hurt the chickens. They knew the birds were off limits. The psychodog, being a herding-type, would occasionally attempt to herd the hens into a squawking, agitated group and run them back and forth across the garden (we discouraged this, as he tended to get overexcited and the hens exhausted), but Zcocksky never deigned to take part in the herding game. Anyway, I’m pretty sure the last decision he ever made was to attack the psychodog inside his pen.

And that was that.

Sunday inspiration

A little while ago I decided to check and see how WarmSocks and I are doing in MedGadget’s 2009 Medical Weblog Awards’ Best Patient Blog contest.

Alas, we are nearly tied for dead last, and midnight tonight marks the end of the voting. Without a miracle of Lazarusarian (is that a word??) proportions, it looks like being finalists in the contest will just have to do.

That is perfectly all right with me, to tell the truth. The whole thing has been a delightful surprise and  a great honor.

Still, I decided to check out the patient blog that blew us – and frankly, all the other finalists – right out of the water with a whopping 46 percent of the votes. It’s Wheelchair Kamikaze, written by Marc, a 46-year-old New Yorker. He has Primary

Marc of Wheelchair Kamikaze

Progressive Multiple Scleroris, and after several years during which the disease whittled away at his healthy body, he now approaches his daily life sitting down, seeing the world (and videotaping it) from the seat of a wheelchair, and blogging about it. He has not gone into this change gently, however (the blog title “Wheelchair Kamikaze” might be a hint…). Instead, Marc approaches his life and the disease that has altered it so drastically head-on and at full speed, with the kind of courage and attitude that most of us can only strive for.

Here’s an example of his thinking; he’s writing about his beloved Labrador retriever Stella, who after a long and ultimately incurable illness, died a few years ago:

“Stella didn’t waste any time bemoaning her fate, or thinking about what might have been, because she was blessed to not have the capacity to do so. As my condition has continued to worsen, I’ve often thought of Stella, and have realized just how right she had it. Feeling sorry for yourself or worrying about future calamity only serve to poison the present, and the present, the now, and our place in it, is the only thing in the entire universe that we have any real control over. Endeavor to live your life like a Labrador, attack each day like it’s a great big Rawhide bone sent from heaven.”

Please go visit his blog and see for yourself what an undaunted spirit looks like.

One of the links on his blog brought me to another, Healing Through Multiple Sclerosis. Cathy Aten is an artist from Santa Fe, NM, who was diagnosed in 2000 with the

Cathy Aten of Healing Through Multiple Sclerosis

disease. Her life, too, has been drastically changed. But she’s another one who chooses to simply get on with things, but not without doing a lot of thinking about life and the way we choose to live it:

“That line between the fight and taking the gloves off is a sensitive one.

I don’t want to neglect doing anything that offers support toward healing.

But working too hard toward a desired outcome is exhausting and leaves room for only narrow results.

Miracles happen when our vision gets a little fuzzy so something beyond what we know can sneak in and take it’s place at the table.”

Cathy has posted a video about her MS and how she deals with it; at one moment, she talks about “softening into humility.” The words struck me, made me stop for a moment and think about all they implied. It was one of those breathtaking moments. The words, typewritten, seem almost harsh, but harshness is far from what they mean from her perspective as an artist and human being. Please visit her blog, too. Read her words. Watch her video.

Reading the words of others who deal with their daily disability and pain with courage and grace puts my own problems into a sort of profound perspective and gives me more fortitude with which to deal with them. We can all use a little inspiration.

And the smiles are free.

Humbug to hypochondriasis

If you’re reading this, you’re probably someone who has rheumatoid arthritis and who wants to learn more about it. Maybe you’re also hoping to find other people who have it; you’d like to check how you feel against how they feel. Most of all, you’re hoping to find good, solid advice, not “wear a copper bracelet to relieve rheumatism,” or “Miracle discovery! Take this (insert dubious product here) and you’ll be well! Only $19.99/month!”

Sigh. You’re probably also feeling pretty darned alone.

And no wonder. There are an estimated 307 million people living in the United States today. Out of all of them, 2.1 million of us have rheumatoid arthritis, compared to the 16 million who have osteoarthritis, the age-related, degenerative joint disease. We’re a relatively exclusive group.

Even if you’ve only recently been diagnosed, you’ve probably already heard these responses to the news from friends and family (and even strangers): “You’re too young for that!” or “Oh, I have that, too. I just take Tylenol and it goes away.”

The subtle implication is that you’re somehow mistaken about your diagnosis or that you’re a big baby whiner. After all, a few acetaminophen tabs and you’ll be fine, right? And besides, weren’t you just working in your garden yesterday, carting around bags of soil and shoveling dirt? Didn’t I just see you carrying bags of groceries into the house?

Because RA is a largely invisible disease, and because of its changeable nature, it’s easy for others to perceive those of us who cope with this disease daily as drama queens and hypochondriacs. We can be energetic, strong, flexible and sunny one day, and partially or totally disabled the next. Grouchy, too. We don’t know, from day to day, if the next flare will be horrible and debilitating, or light, an annoyance and hindrance, perhaps, but nothing we can’t live with. Some of us have even had both types of flares on the same day. Even at the same time in different joints.

We generally can’t predict when flares in the disease will hit us, although some of us get a little warning now and then if we hear about a storm coming our way over the next week or so. A few of us have learned that personally, we feel better if we don’t eat wheat, or tomatoes, or meat. Some of us feel better when we drink a ton of water every day, and some of us can almost predict we’ll soon be enduring a flare if we’re very stressed and tired. But it’s not across the board. The flares we expect sometimes don’t happen. The ones we don’t expect do happen. And what helps you keep the disease under control might help me, but then again, maybe it won’t.

Because of this unpredictability, I find it easy to become focused on my rheuma. I’d rather not be, of course. I’d much prefer my mind be focused on more interesting things, like Clive Owen or European travel. I’d rather think about the tasty meal I’m planning to whip up for supper, or about the walk I want to take this afternoon. But rheumatoid arthritis doesn’t always allow me to lose myself in those other, more pleasant distractions.

RA hurts. Sometimes, it disables. Sometimes the disability is permanent. And it’s for life. There is no cure. No matter how hard I work and exercise, no matter how carefully I eat, no matter how compliant I am to my doctor’s instructions, or how religious I am about taking my meds or supplements every single day without fail, I will always have the rheuma dragon in the wings, waiting to leap out and bite deep into my joint-bones. Then he’ll chew. It will be that way until the day I die.

So sure. I focus on my disease. I need to know everything I can about it. I need to know what weapons are available and how to use them to the best of my ability so that I can allow myself to focus on other, more pleasant things, like Clive. Or my husband. Or my children and friends. On my life.

A piece in the most recent American Arthritis Foundation’s e-zine, Arthritis Today, asks in its headline, “Are you obsessed with your health?”

This paragraph (the story’s third) tosses down the gauntlet:

“Which is worse? A person who skips medications and ignores her doctor’s suggestions or a person so concerned with her health that she can’t think about anything else? Neglecting your health is never good, says Daniel Clauw, MD, professor of medicine, division of rheumatology and director of the chronic pain and fatigue research center at the University of Michigan in Ann Arbor. But the other extreme — focusing too much on your health — can create problems, too. ‘It’s not going to make someone with arthritis get worse, but it can prevent them from getting better,’ says Dr. Clauw. ‘People can get so focused on their health symptoms that they’re paralyzed from doing the things they need to do to get better.’”

What? Is Clauw implying that I might be so obsessed with my disease that I forget to treat it? Or that I’m simply worrying too much? Is the implication that I’m spending all my time huddled in a corner with a blanket over my head, moaning “woe is me…”?

Well, perhaps there are people out there who do that, but I think they’re a rarity. Most of us don’t have time for that sort of self-indulgence. We have too many things to do: we have children to raise; we have to work so we can pay the mortgage and keep food on the table; we have marriages to maintain and dogs to walk. We have to live. And we do it in spite of RA.

Clauw’s statement rubs my fur backwards, to be honest. I’d like to give the good doctor rheuma for a week. Let the ol’ dragon show him his whole bag of tricks: the huge pain, the tiny pain, the sudden pain, the pain that draws out and out and out and seems like it will never, never stop. I’d like Dr. Clauw to lay awake and restless for a few nights, trying to find a position comfortable enough that he can get to sleep even as his shoulder aches and throbs, filling his mind with his agony. I’d like to see him flip burgers on his patio barbecue with hands that feel like someone has stomped on them and now have about the same flexibility as dry clay. Let him pop a couple of Tylenol and wait for them to work, like it does for his buddy, only to find that it has no effect on his pain whatsoever – and then have to deal with that disappointment while smiling at his office staff and being pleasant to his patients. Then I’d like him to reread his own pompous, know-it-all statement about people obsessing with their RA.

Just a week. That’s all it would take. Maybe even a day would be enough.

The thing is, managing a chronic, painful, disabling disease like rheumatoid arthritis takes time. It’s not like we can entirely forget it – if we try, rheuma reminds us of its constant presence by tweaking our fingers hard, or stabbing our knees when we try to walk. Sure, there are occasional hours, days, weeks, or even months when we can put it to the back of our minds because it’s not causing us pain or disability right at that moment. Most of us long for these breaks from pain and fatigue, even for a day or two. We long to focus our attention elsewhere.

And that’s precisely why we obsess – if that’s what it’s called. We want so much to enjoy pain-free days (and days where we aren’t looking at that swollen knuckle and wondering what sort of ugliness is happening to the bone under the skin) that we focus a great deal of our energy on learning how to control the disease. RA is baffling. It’s complex. There’s a lot to learn. Because most of us suffer with this disease alone, and the only one who really believes we have it is our doctor (most of the time), we’re often extremely isolated in our pain and disability. We have no one to talk to who knows, who can commiserate and empathize with us.

But the Internet has opened up a world filled with people who suffer the same pain we do. We can interact with them through chat rooms, online communities and social networks. Those of us who have some time on our hands may spend a good deal of time using these resources. We might “surf” the ‘net a lot, looking for answers to our questions about the disease that we simply cannot ignore.

Is that obsessing? Each day that I pop online to post here on RheumaBlog, and read and comment on my fellow RA bloggers’ posts, I learn something new about rheuma I didn’t know before. Or perhaps I’m given an opportunity to comfort someone who’s hurting like hell. I know how they feel. I know how much they need to know that someone out there cares that they hurt and wants them to get better very soon.

I believe that we’re far healthier being active learners and questioners than if we simply minded our doctors like good, ignorant little patients and kept our concerns to ourselves. I’d rather face living with this disease aggressively than be like I used to be – which was cowed and uninformed, living without access to information that might have helped me deal with my disease better. I’d rather be called “obsessed” than not be able exchange information, comfort and laughter with others who also have RA. I remember how alone and isolated I felt. How I was the only young freak on the block who had this miserable disease; how I endured people’s remarks, how I tried not to see that expression on their faces that told me what they were really thinking: that I was a hypocrondriac. That I was trying to get attention. That I was weak and silly and over-reacting to a little owie.

Read “Are you obsessing over your health” yourself. There’s some good information in it, once you get past the subliminal scolding over catastrophizing your RA. Maybe I’m being too touchy. Too prickly. I’d be interested to know what you think.

Two other RA bloggers have referred to this article and obsession over RA in the last few days. They’re WarmSocks of ∞-itis and Kelly at Rheumatoid Arthritis Warrior. I’d like to thank both of them for piquing my interest in the article and its contents, and for their takes on it. Go read what they have to say, too. Join the conversation.

Hell, maybe it’ll keep you from obsessing.