Monday’s gifts

These foxgloves, which are perennials, always bloom just after Summer Solstice. They're on the north side of the house, which gets diffuse light. Their color amidst the green of the other plants and the blue of the house just delights me. The blood-red lilies below bloomed on Saturday, not long after a rare, soaking summer rainstorm. They were a complete surprise.

Floaty memories

We had a great time celebrating Cary’s birthday yesterday. Just before our guests arrived I finally broke down and took some Tramadol for my hips and hands (why does taking narcotic-style painkillers always seem like such a moral defeat?). Well, I’m glad I did, anyway. It took the sharp edges off the hand-and-hip pain and allowed me to enjoy the rest of the day much more than I would have otherwise.

My lasagna, which I only make about once every five years or so (it’s just way too calorific and full of bad carbs for more often than that), came out spicy, savory, cheesy and delicious. I used a mixture of ground beef and sweet Italian sausage in it, but as I was eating I realized that I like my vegetarian spinach lasagna better.

Does this mean I’m an old hippy? Or is it just that I’m finally growing up?

Maybe both? When it was time for our root beer floats for dessert, I dug right into thefoamy scoop of vanilla ice cream, devoured it in about five spoonfuls, and then settled back happily to sip and savor the cold root-beer-cream mixture left in the glass.

What a surprise! It was so sweet it was horrible. Absolutely noxious. I couldn’t finish it. Which got me thinking, of course. Why had I’d loved root beer floats so much when I was a kid?

When I examined my misty old memory of them, I discovered that it’s about far more than a sweet confection. In fact, the memory is a whole tableau:

Time: 1962-ish. A sizzling hot Friday or Saturday evening in the California summer, probably around 7 p.m.  Dad and Mom would pile my little sister and I into the back seat of our Chevy Impala for an evening at the drive-in movies.

But first, we always stopped at the A&W Root Beer place for dinner. A carhop would come and take our order, then return a few minutes later with a tray full of hamburgers and French fries. The tray had props on the bottom and little hooks on the side so it could be hung from Dad’s rolled-down window, and he’d pass the food back to us while Mom made sure we had plenty of napkins and admonished us sternly to be careful and not drop anything on the upholstery.

The burgers were hot off the grill, juicy and flavorful; the thick, golden fries crispy outside and fluffy inside, always served up still smoking hot from the deep fryer and liberally sprinkled with salt. We’d fill tiny paper boats with ketchup from a squeeze bottle and dip them as we ate.

And somehow, just as we finished our hamburgers and fries, the carhop would be back. This time, though, she had a tray of root beer floats.

A&W served up their invention – root beer poured over a couple of scoops of ice cream – in a tall, thick, frosty beer mug. Just imagine the contrast in sensations: there we were, sitting inside an un-air-conditioned car with windows hand-cranked all the way down, a full day’s worth of California summer heat radiating off the asphalt and cement, baking the weedy, dry vacant lots and making the air almost too hot to breathe. The fireball sun would be starting to set, but it was so intense you couldn’t really look at it.

And then suddenly, into my small, sweaty, grubby hands a treat is delivered that’s so shockingly cold it’s bright. My fingers always froze to the mug for a few moments when I’d take hold of it; I loved that. I’d scratch drawings into the frosted glass with a fingernail and use my fingertips to melt the frost and fill them in. The chill was gloriously sensuous; I’d hold the glass near my face and bask in the cool air around it.

And then, of course, I’d use that long orange spoon to eat the root-beery ice cream and drink the creamy root beer with a straw. I was a skinny little thing back then – I was maybe seven years old – but I always finished the whole mug.

And when we were done, we went to the drive-in. Dad would park, the front of the car tipped up a bit, take the speaker off the short pole he’d parked next to, and hang it on his window. We’d listen to the radio music. It was always silly stuff like “Hello Muddah, Hello Fahddah” – a song that would get my sister and me hysterical with laughter. Mom and Dad laughed too, but I think it was more at us than at that stupid song.

As the sun started sliding lower and twilight descended, pictures of smiling popcorn boxes, hot dogs, Cokes and bags of fries would dance, ghostly, across on the giant outdoor movie screen. It was time for Dad and I to get goodies from the snack-bar.

I remember it as a very long walk. I hoped I would never have to try to find our car by myself, because I knew I’d never be able to, there were so many of them! Off we’d go, hand-in-hand, walking up and over the little asphalt-covered drive-in-movie hills to the dirty little snack bar at the back of the lot. With the sun nearly set, it was finally starting to cool off. I remember the air as feeling so nice, even though it smelled of exhaust. But mostly, I remember being proud because I got to help my Daddy carry the goodies.

By the time we got back to the car, loaded down with bags of popcorn, candy and cups full of soda pop, the movie was starting and the magic about to begin.

From the back seat of that silver-blue Impala I watched, enthralled, delightful Tom and Jerry cartoons and then Bambi, or Snow White, or Sleeping Beauty. I got to see Sinbad the Sailor and swing through the jungle with Tarzan and Cheetah …

… and when the movie was over Dad drove us home, all the windows still open to the soft, summer night, Mom dozing in the passenger seat and his two little daughters drowsing in the back amid a small blizzard of candy wrappers and waxed paper cups, and the air was cool and fragrant and smelled of mown lawns and barbecues.

Well. No wonder the root beer float I had yesterday was such a disappointment. No way it could ever live up to that cherished, 47-year-old memory.

Here’s wishing everyone a lovely and peaceful Sunday.

Big day

Oh arrrrghgh.

Hips and hands hurt. Company coming soon. Cary’s 29th birthday. (How old does that make me??)

So I’m making lasagna and salad, root beer floats for dessert (the first and last are her favorites; the middle one is for my conscience.) Just got the carpets vacuumed, things dusted and neatened, and yes, I have help today. Cary and Matt are pitching in like troopers. Almost-grandson Phoenix wound the cord back onto the vacuum for me with his nice, new 11-year-old hands and kept Shadow and Finny occupied.

Life is good. Wish me luck.

bursitis update …

First, a heartfelt thank-you to everyone who commented on my post, “spoke too soon.” It’s really great to have such a kind circle of friends. I can’t tell you how much I appreciate your compassion, encouragement and advice.

As of today, the hip bursitis is much better than it was, though it’s still there. I did a little more reading up about the condition and started icing (I’m already taking diclofenac, so the meds end of treatment is covered), and that’s helped to ease the inflammation. I’ve also decided to discard the tortuous tennis-ball cure. It’s just too painful, and after trying it a couple more times without positive results, I feel I can toss it without shame.

As for steroid injections, well, I’m not going there yet. Rationally, I understand that they can make the pain go away. Irrationally, the idea of an injection into that already massively painful area gives me the holy heebie-jeebies.
Translation: Cluck-cluck-cluck — I’m a big chicken.
My other hesitation regarding injections is that, since I get my medical care through the VA, my only hope for immediate treatment would be a visit to the VA ER. While my few experiences there (because of the the dog bite) have been good, I’d rather not make use of the ER unless I’m in such severe pain there’s really no other option. Hip bursitis is bloody painful, but my life is not in danger; it really isn’t an emergency. And short of a steroid injection, I’m already doing all that can be done to relieve the bursitis on my own.
RA Superb*tch pointed out in her wonderfully dry, no-nonsense way that my bursitis is actually caused by my rheumatoid arthritis, so treating it directly related to getting my RA under better control. I honestly hadn’t made that connection at all; I was thinking of the two conditions as completely separate. Sometimes I can be incredibly dense. (Thanks for the heads-up, SB!)
And she’s right, of course. So, when I see my rheumatologist in July, I’m going to remind him that we were going to start me on plaquenil. (With all the chaos caused by my dog-bit hand and my freaky high blood pressure on the day of my appointment in May, we both forgot all about starting the new med. I only remembered it several days later.)
With luck, adding a third DMARD to the mix will help both my RA and this nasty bursitis. In the meantime, I’ll keep icing as needed, keep taking the NSAID I’m already on, do the stretching and strengthening exercises I’ve been taught, and give Shadow his tennis ball back, which will make us both happy.
And I’ll continue to be grateful for all of you, my friends. You’re the best.

Fessin’ up …

A couple of nights ago I was at the kitchen sink, a big artichoke from the garden in one hand and a pair of kitchen shears in the other, cutting the pointy tips off the ends of the artichoke’s petals in preparation for steaming. There was a plastic bag full of them, waiting for my shears.

And I was angry.

I was angry because I was doing this chore myself, even though Mr Wren had promised me he would do it. I was angry because my hands were swollen, twinging and aching as I wielded the scissors and the vegetables, and because I had to run lukewarm water for rinsing since cold water hurts my hands too much. I was angry because only a few days ago I felt so good, and now, along with a new flare of bursitis in my hips, my bloody hands were back to their old tricks. I was angry because the kitchen was too warm after a day in the high 80s and there was nothing I could do about it. I was angry because I had to keep telling Shadow to get out of the kitchen, over and over again.

But mostly, I was angry at myself for being angry over things that were so trivial.

I have a confession to make. After reading Kelly’s post about RA and anger, and then Kris’s short post referring and commenting on Kelly’s, I had a minor epiphany. I’d commented on Kris’s post that I don’t get angry, I get frustrated. That I find anger useless, basically, and I don’t like directing my frustration at others. I do let it vent, though, usually in short bursts of blue language.

Or by gritting my teeth as I snip the pointy petal tips off artichokes.

So what was the epiphany?

I realized that I do get angry. Not just politely frustrated, but seriously angry. I had to acknowledge it as I worked on those artichokes.

One of Kelly’s points was about articles in the media that seek to blame RA pain on things like repressed anger. Or articles that indicate that people with RA have lower pain thresholds than people without it. This sort of thing is so useless – and worse, it creates stereotypes that can actually harm people who have RA. When people are told, by seemingly reputable sources, that women diagnosed with RA not only cause their own pain by repressing their anger, and are weak and wimpy on top of it, it hurts. And because some otherwise good doctors are also influenced by this sort of BS, many of us are given the runaround when it comes to diagnosing the disease and getting adequate treatment and pain relief strategies for it.

I can’t deny that repressed anger creates inner stress and angst. Or that stress, endured without some sort of outlet, can certainly make a flare seem a lot worse (if not actually make it that way). It’s even possible, I suppose, that repressed emotion can trigger a flare, though I’m not convinced of that. I can be happy as a bluebird and flare up. Go figure.

And I also know that different individuals perceive and experience pain in different ways. I know for a fact that I can endure a lot of pain before I break down. I’m quite experienced with it, and I know the difference for me between light pain and heavy pain. The thing is, that perception is one of the main problems that doctors face when trying to treat a patient’s pain – they can’t accurately measure the amount of pain their patient is feeling. They have to take us at face value.

This would be fine, except not all patients are being honest about their pain, and doctors are rightfully wary about prescribing narcotics without being sure. Not only might they be initiating or feeding an addiction (which will only get worse with time) by prescribing narcotics, they could be an unwitting party to the black market in prescription painkillers. Being “easy” could cause them to lose their license to practice medicine.

That’s another issue, and a big one. Unfortunately, there’s no easy answer, but articles that push these erroneous theories about women who have RA are both unfair and harmful. They need to be debunked.

Anyway, yes. I do get angry sometimes about having rheumatoid arthritis, and now, bursitis. It manifests in me mostly as frustration, and because I’m a low-key type of person, I generally blow that off and move on. Life is too short, I’ve always figured, to waste on being angry about something I can’t change. Anger makes me focus too much on the moment’s disability and pain. It makes me feel sorry for myself, which I hate. It makes me feel angry at my family – and it’s not their fault I’m hurting.

The epiphany of the other night did, however, allow me to look more closely at why I was angry and what I can change, myself, to avoid it in the future.

First and foremost, I can be more assertive. I can hold people to their promises rather than picking up the slack without a word. It wasn’t Mr Wren’s fault that my hands and hips were hurting me, but when he wasn’t available to prepare those artichokes he wanted for dinner, I shouldn’t have done the chore myself. Instead, I should have told him, later, that the reason we weren’t having his artichokes for supper tonight was that he hadn’t prepped them as he’d promised.

Because if I think about it, that was really the source of my anger that evening. The rest of the things I felt angry about – my physical pain, my disappointment that it had returned so quickly, the pesky dog, the cold water that hurt my fingers, the hot, stuffy kitchen – all those other frustrations grew out of it like the tendrils of a noxious weed.

That sort of thing does me no good. By the time supper was on the table, I’d let it all go, vented bit-by-bit in dark, muttered cussing and banging things around a little more than necessary. But for that thirty minutes or so at the kitchen sink, I was in a deep funk, furious at my lot in life, acutely aware of each twinge in my hands, of my aching hips, of my “misfortune,” and of the thoughtlessness of my loved ones. I absolutely wallowed in it.  And if I’m honest, I have to admit that my anger colored the rest of the evening even though I’d thought I’d dropped it. Later on I felt blue. I didn’t enjoy the softness of the summer night, or go outside and look at the stars while I listened to the cricket songs. I forgot to laugh. I forgot how to look for the gifts.

So I’m working on this issue. It may be natural to get angry over things we can’t help that hurt us, but it’s not natural, or healthy, to aid and abet it. I’ll be speaking up for myself more often. Thanks, Kris and Kelly.

Spoke too soon

Naturally, within 24 hours of hooting like a fool in public about my wondrous lack of rheuma pain, I began hurting.

Wouldn’t you know.

I’m not religious, but the words “God is not mocked!” come immediately to mind (A leftover, perhaps, of many wriggly Sundays spent in church with my cousins when I was small. Or maybe it was Charlton Heston in The Ten Commandments who said that, and it stuck. Wait. Was it Spartacus? Did Heston play Spartacus? Naw, Kirk Douglas was Spartacus.)

Never mind. Because if there’s really an all-powerful, kindly, loving Supreme Being in charge of Everything in the Universe (including little ol’ me), why would He/She/It be so petty and thin-skinned as to punish me for being happy about not hurting? Do I deserve being zapped for the sin of pride? Hmmm. I can almost hear Her/Him/It: “You think you’re so smart? Well, try a little of this!”

Nah. I think I was simply mistaken. I’d rather not believe in a God who acts like a spoiled 12-year-old when He/She/It gets Her/His/It’s nose out of joint. We’ll just move on.

There is good news. (This would not be a bona fide Wren post if there wasn’t a silver lining, right?) It’s not rheuma pain I’m feeling. It’s that danged bursitis.

Yep. Both hips. It started as a little twinge now and then when I walked. I was determined to ignore it. No, I told myself, that’s not real pain. That’s just a little poke. Nothing to see here, move along! So you just sat on your fat arse for too long, that’s all. Naturally you’d feel like someone put gravel in your hip joints. Shoot, that’s nothing but a little stiffness and … OK, pain. There. I said it. But it’s hardly any. And even if it is actual pain, it won’t last. In fact, as soon as I get distracted by something else (it helps to have the attention span of a crow in a jewelry box. Oooh shiny!) I won’t even feel it anymore. See? What pain? Ouch. Dang … (rubs hip with fingers) …

Of course the little twinge turned into a big one before long, and as of this morning, both hip-joints ache when I’m sitting or laying down, and howl at me when I stand up and walk around. I was convinced for so long that this was rheuma, but no. Both my rheumatologist and my regular doc say it’s bursitis. Fine. Be that way.

So I pulled out the sheet of exercises my regular doctor gave me when I last saw her, the ones that are supposed to help get rid of inflammation in the bursae (which I promptly filed away and did not do because I wasn’t hurting at the time. Smart, right?)

First, I got down on the floor and stretched out on my back. You’re supposed to be on a hard surface. I did the simple stretching exercises (only a little difficult to do while the local Schnottie licks your face and bounces on your stomach, totally delighted with this new game).

Well, that wasn’t too bad. Emboldened, I slipped out to the living room and stole Shadow’s tennis ball. He hadn’t been chewing on it recently, so it wasn’t wet and slimy. Just a little … crusty. No problem, I’m wearing an old t-shirt and jeans today, and I’m not expecting a visit from President Obama tonight. As my daughter would say, “It’s all good.”

I looked at the instructions. “While on your side, place the tennis ball between the tender point on your hip and the floor and relax your full weight onto it. Remain in that position until the pain stops.”

When my cool, hippy-dippy VA primary care doc explained this exercise to me a few weeks ago, I winced just thinking about it. She’d only just pressed two stiff fingers into the tender point on my hip, causing me to jerk and yelp. If she could cause that much instantaneous pain just by pressing that spot for a second, I could only imagine what doing this … exercise … would feel like.

She said it would hurt. But she also said it would help.

So I got down on my side. While Finny wiggled and bounced and barked and tried to take it away from me, I put the tennis ball between my hip and the floor, right at that tender place. I steeled myself and relaxed my weight onto it.

“Oh, holy @*#!”

I mean, !*#@! that hurts! Imagine, if you will, a blunt iron railroad spike digging mercilessly into your hip joint. Imagine just letting it. Then imagine staying in that position until the steel spike doesn’t hurt anymore. When is that? When you pass out from the agony?

I managed about 20 seconds on my right hip. That is not long enough, apparently, for the pain to go away, because it didn’t. In fact, it intensified until I was turning the air blue. I have to admit I chickened out on the left hip.

I’m not beaten, though. The tennis ball is right here on my desk, still crusty with dried Shadow slobber. I think it’s laughing at me. And my hips continue to ache. So I’m going to try again in a little while. You know, once the trauma-memory fades a bit and the tramadol kicks in.

Remind me not to brag about being pain-free again, OK?

Harmony

For some of us, a sudden season of comfort has arrived, out-of-the-blue, unexpected, a daily, even hourly surprise.

I drew this using the free, online software drawing application called "Harmony." It's fun! You can find it at http://mrdoob.com/projects/harmony. Click picture to embiggen.

Cathy, Terry and Megan are all enjoying a holiday from serious pain these days. Others are, too. I am. It’s wonderful, but …

But? How in the world could I question an extended break from rheuma pain? Isn’t this what we all dream about? Shouldn’t I be thankful? Why do I need to whistle a little doubt into this delightful interlude?

But I am thankful. Look at me! I can move! I can pick up a heavy pan with just one hand and move it confidently from stove to sink! I hardly think about it. I roll out of bed in the morning and hit the floor running, no laying there for a while working out how stiff I am or what parts of me are too sore to move just yet. In the shower I raise my arms smoothly over my head and scrub shampoo into my hair with fingers that don’t twinge and ache. (I’d sing, but freedom from pain doesn’t mean I can suddenly carry a tune. I’m not expecting miracles, for goodness sakes.) I dress, do chores and walk freely, easily, my body moving as it was made to move. How very strange. Hips. Knees. Ankles. Toes. No hesitancy, no caution necessary.

Painkillers? I don’t need no stinkin’ painkillers! No Tylenol, no Tramadol, no Vicodin. The little bottles sit untouched in my medicine cabinet, hoping to grow cobwebs.

I whisper, “This is good.”

Sure, I’m taking my other rheuma drugs, the ones that “slow” the disease’s progression and “reduce” inflammation. But in the past, taking them didn’t erase stiffness, pain or fatigue, which meant that the rheuma was still active, my joints still inflamed and reacting to the insult. I was bummed. Still, my doctor assured me that in spite of my sore hands and wrists, my blood tests showed that these powerful drugs were doing the job promised. Good sulfasalazine. Good Arava. Never mind the hair loss or the lack of a good defense against infection. Minor annoyances, worth the drop in my sedimentation rate.

My doc is on my side. I have to believe him. He’s my strongest ally – perhaps my only ally – in my forever battle against the rheuma-dragon.

And now today, yesterday, the day before. No pain. The mind boggles.

Another of my Harmony drawings, using the mouse as a pencil. I'm hooked.

Deep down, I know why I distrust this sudden, if positive, change. It’s because there’s a word I want so much to use – remission – but I’m afraid to use it. Because of my past experience, for me remission means no RA symptoms for an extended – really extended – period of time. Not days. Not weeks. Not even months. No, for me, remission means years. Many years of life without any kind of rheuma pain, mild, moderate or severe. It means being able to say “zero” to the pain-scale question when the nurse calls me in for my pre-appointment assessment. It means living, moving, being, without pain.

I’m afraid of the word because I know that remission is exceedingly rare in rheumatoid arthritis, even though our doctors like to use the word as the proverbial carrot on a stick. I’m afraid because I once experienced a very long remission – so long that I almost forgot I had RA – only to have it fall apart as the dragon woke suddenly, stretched, discovered he was ravenously hungry and started attacking and biting me again.

Remission? I’d rather have a cure, if you don’t mind.

But you know what? I’m going to shut up. I might not believe in remission any more than I believe in the Tooth Fairy, but I’m not going to complain about my current lack of rheuma pain. I’d rather celebrate it, enjoy every minute that I can get that comes without pain. I know it will be back, probably sooner rather than later, but I’ll deal with that when it comes. For the moment, the dragon is slumbering somewhere deep inside me. I’ll whisper so as not to wake him as I delight in the little things, like making my bed without grimacing, without muttering “ow!” and bluer words beneath my breath as I tug up the sheets. Like enjoying how it feels to walk on the smooth soles of my feet, feet that suddenly have no sharp gravel in them, no throbbing pain with each step.

I can’t help but wonder why the pain is gone. Is it the weather, which is finally becoming summer-like as the Solstice approaches? We’ve had a nice little run of sunny and mostly-sunny days here, with temps in the mid-70s and 80s. No drastic barometric swings, no chilly rain or oppressive heat. Just nice. Sort of like remission…

I’m in good mood. I’m happy for my friends, here in the RA blogosphere, who are also free of debilitating pain at the moment. I hope we all get a good, long holiday. And I hope that those of you who are still battling your dragons minute-to-minute will also get a break real soon. A nice, long breather. Time to rest and recoup. Time to laugh out of joy, not just to cover the pain and keep up the tough image to family and friends.

Just simple, pain-free time. I think we deserve it.