About disablement

RA Guy recently wrote about his ambivalence concerning the possibility of having to use a wheelchair in the future. He’s a positive person and a pragmatic one; eventually he came to the conclusion that there’s no need to be ashamed or to feel diminished because one needs assistive mobility devices in order to maintain one’s independence.

Walking isn’t a problem for me right now. But there have been many times in the past when my rheuma-caused pain and disability made the world seem pretty bleak.

In the first years after I was diagnosed, I lived in a German maritime city on the coast of the frigid, stormy North Sea. The surrounding land was flat, a strangely beautiful mixture of marsh, moor, farmland and patches of deciduous woods. Across this level plain the sea winds danced, whistling and shrieking their way through the seasons, all of which were damp and only one of which was warm. The winters in Norddeutschland were utterly, bone-chillingly cold. Snow was rare. Slashing rain, sleet and glazings of ice were not.

 I absolutely loved it there. Living in Germany, in Europe, was a lifelong dream come true. Then Rheuma crashed the party.

Sometimes it seemed like it was working in collusion with the weather and the Fates. RA would strike my knees, my ankles, my feet or toes on the very same, frigid days the dang car wouldn’t start. (we had an old BMW 2002 that refused to run for more than two weeks between trips to the garage.) So I’d venture into the pre-dawn, winter dark, bundled up like the little brother in The Christmas Story, gimping and cussing as I walked the four-block journey to the bus stop as fast as I could so as not to miss the bus and end up standing in the cold for another 20 minutes. Once on the bus I’d greet my German neighbors, grab a strap and stand for the whole ride into work, as there was seldom a free seat. In the course of a day, I’d limp rather than drive from one end of the U.S. Army kaserne where I worked to the other, doing my job. And when the day ended, I’d repeat the whole process in reverse.

In a car, these distances were nothing. But walking even short distances with a flared knee or foot in those cold weather conditions were, I realize now, feats of courage I’d never have believed I could muster.

Yet I did it. Frequently. And I smiled and laughed and conversed with people because I didn’t want them to know how frickin’ bad I was hurting.

Of course, there were times when the pain was so intense I couldn’t bear moving, so I’d call in sick and stay home. I never got comfortable with that; I always felt like I was being a weakling, and that others would think I was faking it. I wasn’t – and I loved my job – but no one I knew or had ever known had RA. I knew little about it myself, so I had no context in which to place my pain, disablement and, sadly, my shame.

After a year or so of living with frequent flares, I learned to just use my cane when I needed to. I learned to use crutches, too, for those times when I couldn’t bear to put even a little weight on the affected joints and my doctor, stumped, put a plaster cast on my foot and told me to stay off it for several weeks. There were so many times when I’d have given just about anything for a wheelchair just so I could get off my feet or stop using my aching hands or shoulders to support my weight. But I never dreamed of asking for one.

Silly goose.

I didn’t like having to use a cane or crutches. I didn’t like how they made me stand out (although I’m sure my limping made me stand out anyway). When I used a mobility aid, sometimes people would ask, solicitously, how I’d hurt myself. I’d have to explain, embarrassed, that I wasn’t hurt – I just had rheuma and my foot was flared. More often than not, they’d blink and change the subject. I couldn’t blame them – even to me, I sounded like an attention-seeking wuss.

I’d like to think I’m past embarrassment when it comes to mobility aids, but I’ll admit I don’t like wearing my Spidey-gloves in public. And I’m a little ambivalent about my old cane, which hangs hidden in the back of my closet. Although I haven’t needed it in many years, and even though the disease was in remission for a long time, I could never bring myself to get rid of it. In the back of my mind were the quiet warning words, “just in case.”

What’s new to me is this rheuma fatigue. I just don’t remember getting so wiped out so easily when I was fighting the disease originally. It keeps catching me out. Yesterday I was doing a little Christmas shopping with Mr Wren. We were in one of my favorite stores – World Market (used to be called Cost Plus). I love browsing through this store at any time of year, but I particularly love it during the Christmas season because they carry so many of the candies, Christmas things, ornaments and specialty foods I used to see when I lived in Germany. Wandering around World Market puts me into a sweetly nostalgic mood. I rarely leave empty-handed.

And yesterday was no different, at least that way. What WAS different was that after 20 or so minutes of perusing the aisles, suddenly I was tired. And I mean sit-down, close-your-eyes, hug-your-knees tired. I knew I had to give it up. We still had to go pick up my car at the auto mall (Mr Wren had bought a new Toyota Tacoma the day before and left my Kia there overnight). I still had to drive it the 50-plus miles home.

Well, we made it, but I was truly done in. While I can recall times in the past when I was so tired after a long day at work that I could barely drag myself up the three flights of stairs up to our flat, it’s not the fatigue that stands out. It’s the pain.

Today, it’s both.

Rheumatoid arthritis is completely unpredictable. I hope it will be a long time – if ever – before I need to use my cane, get crutches again or use a wheelchair. But I know better than to ignore the possibility. Acceptance, with every else that’s good in life, comes with time.

That sneaky rheuma

Rheumatoid arthritis pain can be sneaky. You’re familiar, I’m sure. You know, you’re cooking dinner. You grab the handle of a pot and lift it off the burner. The moment you do, it feels like the small bones in your fingers just shifted a quarter-inch sideways inside your skin. Hurts like a – well, I’ll be a lady. But you don’t drop the pot – it has boiling hot liquid in it. What you do is yelp, set the pot back down with a clang and clutch your now-throbbing hand to your chest.

From the living room: “Are you all right, Mom?”

“Yeah. Rheuma.” And under your breath, you cuss your fingers, the pot, the disease, your screwed-up immune system and the handfuls of drugs you take each day that aren’t working.

Or you’re typing. Just breezing along. Yeah, it hurts a bit. The joints aren’t happy, but you can’t just stop doing everything, especially when the pain is low-level and bearable (if not actually ignorable). Suddenly, as you stretch your right index finger that tiny upward and leftward distance to tap the “y,” it sends a vicious jab of eye-popping pain from fingertip to knuckles and back. You flinch, yelp again and stop typing. You wait, hoping that the annoyed digit will calm down.

Or, like this: A few minutes ago I cleaned the ashes out of the wood stove and, with my hands encased in heavy work gloves (but pink ones, because one has to keep up appearances) I carried some heavy stove-lengths of split almondwood inside so I could start a new fire. The previous one burned out in the wee hours this morning, while we were still all tucked into bed, so now it’s about 56 degrees inside. Since the wood stove is our main source of heat during the chilly months, this has to be done unless I want to huddle under the comforter all day. OK. It’s tempting sometimes, but …

Anyway. I got the fire going after two or three tries. I pulled my thick Spiderman* gloves on (I’ve learned to be solicitous of my hands and even apologize to them when I do things like lift weighty chunks of firewood). As polite flames licked up the sides of the logs, I sat down on the sofa. Opened my laptop to start reading the day’s headlines. I cradled my coffee cup between my hands, enjoying the warmth, and had a sip, a reward for dealing with this daily, early morning chore without a hitch.

And as if on cue, my right hip started stabbing me in time with my heartbeat. Buh-STAB-bump. Buh-STAB-bump.

So here I am, back in Rheumaland, where the air smells like eucalyptus and Tiger Balm, joint splints live tucked among the underwear, and pill-bottles rattle in the corners. I’m unable to forget for even a little while that I have this … this … disease.

And that’s how it’s been around here for the last three days or so. Sneaky pain. It always surprises me. You’d think after all these years it couldn’t ambush me like that anymore, that I’d always be ready for it, steely-eyed and armored-up. Well, no. Because when my joints aren’t hurting, I slip with heedless ease into normality, just living and doing, moving like my body was meant to move. And since I’ve slimmed down, moving is so much easier. I’m more graceful. (!) And I enjoy moving again. Who wants to remember the threat of painful joints?

As my re-newed bout with rheumatoid arthritis re-enters this more active stage (and I begin re-learning old lessons), I find myself being a little … tentative … about doing things I’d usually do without thought. But I resent having to slow down and think “how will this hurt me?” before I do things. I worry, too, that the pushing and pulling I’ve been doing with the weight machines at the gym is irritating the joints in my hands. Which means I’ll need to re-think that healthy activity and (sigh) come up with an equally healthy alternative.

Oh well. I guess there’s never a dull moment in Rheumaland.

*Thermoskin gloves, which are black with a sorta of fish-scale, grippy pattern. Spidey-gloves.  They’re made of a thick, soft, flexible, rubber-like material and offer support without inhibiting necessary movement. They also keep the joints very warm – always a good thing. And finally, they’re making them in beige! I just ordered two more pairs here.

 

We all need a “time out.”

This has nothing to do with rheuma, obviously. But I just had to post it. I’m … stunned (pun intended).

A police officer in Little Rock, Arkansas “tazed” a little girl, with her mother’s approval, because the child refused to take a shower.

Officer Dustin Bradshaw’s report states that the girl was “violently kicking and verbally combative,” so he darted her with his Tazer, giving her a “very brief stun to her back.”

Is it just me, or does this seem a trifle … overboard?

I mean, this was a 10-year-old, not a 180-pound man hopped up on angel dust and waving a tire-iron. A 10-year-old girl. Unarmed. Kicking and screaming and obviously out of control, but this is not necessarily abnormal behavior for a child. Annoying, aggravating, even infuriating behavior, certainly, but who in hell would shoot a 10-year-old with a Tazer gun?

Apparently, an American policeman.

Officer Bradshaw has been suspended from duty for a week, with pay. I know the suspension will go on his records, and that’s not so good for him, promotion-wise, but otherwise, it’s like he’s getting a free week of vacation for electrocuting a child in order to stun her into submission. And you know what? He wasn’t suspended for shooting the child, but because he forgot to attach a video camera to the gun before he fired. Seems he broke department rules when he did that.

The little girl was physically unharmed, according to the story by the Associated Press, though one does wonder what her mental state must be, given that her mother called the police on her for not taking a shower when she was told – and then gave the officer permission to shoot her with a Tazer because she was throwing a tantrum.

This is incredible. No – it’s monstrous.

The child is now staying at a youth shelter. Ozark Mayor Vernon McDaniel wants the Arkansas State Police or the FBI to investigate whether the use of the Tazer on the child was proper.

Holygods. This is a question?

What’s next? “9-1-1? Hurry! My 14-year-old son won’t clean his room! Have the police come and taze him! That’ll teach him to do what I tell him to do…”

Sometimes I wonder what we’ve turned into. Where are the brakes? We accepted that our government was torturing people – most of them innocent people. It was, I guess, a kind of revenge for the Sept. 11 terror attacks, along with two wars. Now we stun children into submission with high-voltage darts for not minding their mothers.

America seriously needs a “time out.”

A preemie’s story

I was born on October 25, 1956. My timing was a bit off; I wasn’t expected until the second week in December, a sort of early Christmas present from the stork. Instead, I was an early birthday present for my mother, who was born in mid-November.

I jumped the delivery gun by seven weeks.

I didn’t actually plan this. If I had, I’m sure I’d have been in the proper position for launch. As it was, the first part of me the startled doctor saw was my tiny, skinny, wrinkled butt (a physical state I’ve never been able to duplicate, though at this particular age, I’m working on the wrinkled part and feel sure I’ll achieve it before long).

It was a real big pain for my mom, my premature birth. Dad was caught off guard but he took it all in stride. All he had to do was pace the waiting room, smoking, wondering which flavor he’d gotten and hoping he’d know soon so he could go buy cigars to hand out. Mom was the frightened, brave girl-woman with her feet up in the cold steel stirrups, though, unprepared for any of it, no anesthesia, no Lamaze training – hell, no cigarettes. They had a hard time getting me out – I guess maybe I realized my mistake and changed my mind. Anyway, my birth took a long time. Mom endured it, terrified as she was.

I’m flip about this now, 53 years later. But the fact is, Dad was terrified for my mom and for me, because being born prematurely in the middle of the 20th Century was pretty dangerous situation. It still is, but today medicine can save the lives of premature babies who would surely have died back when I was born. I was terribly early and breech to boot. I’m lucky to be here at all.

They kept me at the hospital, in an incubator, for seven weeks. During that time my parents visited me every day, but they weren’t allowed to hold me. A nurse would get me out of the incubator for a minute or two and bring me to the window so Mom and Dad could look at me. At least once she held me up, cradled in and balanced in one hand, so my Dad could take a photo.

I gaze at that old, faded and yellowing black-and-white print in something like awe. My head wasn’t even as wide as her palm. My bare feet – each with the correct number of toes – couldn’t have been more than an inch long. And my toes: think baby corn kernels.

“You were like a baby doll,” Dad used to tell me, wonder in his voice, “but you were alive.” I had yellow jaundice because my premature liver wasn’t ready to work on baby formula yet. I had yellow fuzz on my head. Today my left ear lacks the curl-over along the top, making it sort of pointed, like an elf’s ear, because I wasn’t quite finished when I came off the assembly line.

I like to think that perhaps there’s an elf in my ancestry.

I’ve never met another preemie, but I know of one other, a man who’s a year older than I, and who, in a quirk of coincidence, is also of Finnish ancestry. Stephen Kuusisto is a poet, an author, and a professor of writing and disability studies at Iowa State University. He’s a speaker, a blogger, an advocate for people with disabilities and a Fullbright Scholar.

Kuusisto is also blind, a victim of the pure oxygen that was pumped into his incubator to help keep him alive. The trouble was the oxygen sometimes damaged the delicate eyes of premature babies.

The medical world realized this mistake the same year Kuusisto was born, 1955. Unfortunately, the practice wasn’t stopped in time to save his vision. By the time  I was born, they no longer used pure oxygen in the incubator. My peepers were just fine, though I wear glasses and have for the last ten years or so. My eyes are getting old right along with me. Once again, I was very lucky.

I was a preemie, but I grew up to become an average-sized woman. I was on the slow end of the pediatric growth charts for the first seven years of my life, though, prompting my doctor to worry, privately, that I might be a midget.(He only told my mother years later.) Then I had my tonsils out and started growing like a weed.

Sevens have always been important in my life.

According to the March of Dimes, there are 31 percent more babies being born prematurely since 1981, the year my own daughter was born (right on time). Prematurity is the number one killer of newborns and can lead to lifelong disabilities. These babies aren’t only diminutive. They’re unable to suck, and often unable to breathe on their own. Their tiny bodies – their organs, brains, circulatory systems, renal systems and lungs aren’t ready for life outside the womb yet. That’s just not good. In fact, it’s tragic.

The March of Dimes – and millions of moms and dads and prospective moms and dads all over the world – would like to know why so many children are born before they’re “done.” Because right now, there’s no good, solid answer. Premature births happen without warning and often, without discernable reasons.

Many people are donating funds toward finding the answer, and a solution, for premature birth. You can be one of them, as I am. Visit http://marchofdimes.com/prematurity/index.asp for more information about how to do that, and how to raise awareness of this serious issue during November, Premature Awareness Month. Join us in the March of Dimes’ Fight for Preemies.

Everyday magic

I pulled my car into my driveway a little while ago after a busy morning of chores and errands. As I climbed out and closed the door, I realized that there were things peeping all around me. “Peep!” over here, “peep!” over there, “peep!” high and “peep!” low. The peeps sounded – just slightly – as if they were coming from some other dimension along with the one we all live in. Like an off-kilter echo.

I stood there next to the car, joy filling my mind as I listened. For several long moments, I couldn’t think of anything else — not my twinging fingers, not the chores still ahead, nothing.  Just this beautiful, otherworldly sound that was coming from all directions, like random raindrops.

The “peeps” were the voices of bush tits, some of the tiniest birds on the planet. Really. They’re around three inches long, tops. They have to be almost as light as the air itself. They are always moving, little bundles of energy and velocity, never still. They’re native to Northern California and make their long, hanging, sack-like nests high in the branches of foothill live oaks in the hot summertime.

Bush tits are tiny, but they make up for their diminutive size by having these booming (for them) peeping chirps and traveling, always, in a massive mob of featherpuffs. Where other birds move around singly – a single robin, for instance, will land in that tree over there – bush tits move as a cacophonous crowd, an amorphous entity. When they choose a tree in search of an aphid smorgasbord, they permeate it.

So what was happening in my driveway a while ago was that a couple of mobs had descended on the many trees and shrubs in my garden, and they were communicating as only bush tits can as they ate their fill of ants and other tiny bugs. Because bush tits are so small, they’re nearly impossible to see among the leaves and branches. You can see the leaves shivering as they move from twig to twig, but you can’t make out the bird.

This is life. This is magic.

And today, after two nights of mostly uninterrupted sleep, I’m feeling well enough to notice the magic again. As I write, there’s a flock of goldfinches moving through the hedgerow outside the open screen door, chirping and talking to one another. The world swells with life even as it prepares to drift into its long winter sleep.

This morning I felt well – and energetic enough – to go to the gym for a workout, stop by the salon to get my hair trimmed, pop in to buy eggs and cereal at the grocery store, and finally, to zip down the mountain and pick my son-in-law up at physical therapy.

I’m feeling tired right now, but it’s not that flattened out, whipped sort of tired that rheuma usually brings with it for company. My rheumatologist recently prescribed a new anti-inflammatory med and 10 mgs of Elavil for pain and to help me sleep, respectively. I’ve taken them for just the last two days.

And how about that. They worked. I slept through two whole nights.

Now I’m taking a little rest, but when I’m done, I’ll see what else I can accomplish today. Once I’ve refueled, you might have a hard time keeping up with me. I may not be as tiny and quick and magical as a bush tit, but today, at least, I’m living up to my nickname.

Into the current

Frazzled

Another night of restless, frequently interrupted sleep. At 4:30 a.m., I’d had enough. Awake again – wide awake, eyes wide open, brain all powered up and thinking along nicely, thank you – the very idea of trying to fall back to sleep was – get this – exhausting.

So I got up. I watched the day begin, that first, almost imperceptible fadingautumndawn of the stars; the shift from the subtle night palette of black, gray and blue tones and shades to the muted reds, greens, yellows of morning twilight. I listened for the moment the birds wake up and start conversing amongst themselves, even though it’s still mainly dark. I heard the freeway, a quarter-mile away and downhill, rousing and coming alive with the susurrus of tires on asphalt as the early-bird commuters hurtled down the mountain toward their jobs in the valley.

I made a cup of coffee as the sun rose. I stirred evaporated milk into it, then poured a few tablespoons into a little bowl for the cat. I opened the squeaky door to the woodstove and added a couple of almond wood logs to the glowing coals left over from the night. And here I sit in my chair near the stove, soaking up the warmth with my be-socked and be-slippered feet up on the ottoman. I’m still in my gray t-shirt and grey pajama bottoms with the bunnies on them; I haven’t worked up the gumption to get dressed yet. My flaring hands are cased in Thermoskin gloves. My right jaw and some unknown joint in my neck, on the left, are also flared, so that I cannot turn my head or open my mouth without wincing. And my left shoulder is twinging ominously.

But the sun is well up, now, and the day is underway. I can sit here and mope, or I can let the day’s current pick me up and carry me along with it. I think I’ll dip a toe in …

Thoughts on technology

Both Carla, who writes the blog Carla’s Corner, and Lene, who writes “The Seated View” have posts up about the new technology that’s available to us these days and how helpful and just plain nice it can be. Carla’s post is about the Kindle; Lene’s is about computers and the Internet. I don’t like to be a copycat, but hey – they’ve inspired me. I want to share.

Like most people of a certain age – those of us who were around before computers became a normal, mundane part of our daily lives – I still react to technomagethem with a mixture of affection and awe. It amazes me what they can do. It amazes me that I can send emails from my cell phone, and that I can send emails at all. I’m overawed that I can hook into the ‘net and browse websites with my iPod Touch. This morning I downloaded a couple of audio books into it.

All of it is just magical to me. I posted this comment on Lene’s blog:

Just a couple of days ago, as I was helping my Mom get her wireless printer and laptop computer talking together again, she commented on how glad she was that I could help her, since she doesn’t understand the first thing about computers.

In her very next breath she said, “I just don’t get how you can spend all that time every day on the computer!”

The criticism was unspoken but implicit. It hung on the air between us. I’m not sure why my computer use bothers her so, but it has ever since I got my first computer. She feels I’m wasting my time.

I just smiled and said (over the blare of the talking heads on the TV in the kitchen), “I don’t understand how you can watch TV 24 hours a day, either.”

Frankly, I can no longer imagine a world without computers and the Internet. I’ve met so many delightful people via blog comments and chats, and they’re all just as important to me as the friends I have in the “meat” world. When I first got RA, back in the mid-80s, I didn’t know anyone else who had it. There were very few resources in the local library regarding RA and I had no one I could talk to. I felt extremely isolated in this disease.

The Internet has allowed me to learn far more about RA than I ever dreamed I might. And it’s also allowed me to talk to and interact with others who understand the disease and how it affects our lives because they have it, too. I no longer feel so alone, so isolated.

Can something this liberating really be bad?

 

It’s also empowering. Remember that old saying, “knowledge is power”? So true. My computer allows me to read, to write, and to learn every single day, whenever I can give it some of my time. I still have other things to do each day – I work in the garden, I do laundry and cook meals, I keep my house reasonably neat and clean, I visit with friends and relatives. But with the computer, and the Internet, I can even look for a new job. That’s also a part of my daily life.

I’m a writer. The computer and the Internet are gifts I treasure. They’ve widened my world in ways I’d never have believed 20 years ago. Research material is available at the touch of a few keys; I just have to be mindful of information that may be less than accurate, since the Internet is such a truly democratic medium, open to anyone with a little knowledge, right or wrong, who can use a computer.

But it’s fabulous, isn’t it? I may not have the financial means to travel all over the world to exotic places or to attend expensive classes, but via my laptop, I can go virtually anywhere on this planet or learn anything I want to – all for the price of the computer itself and a monthly broadband connection.

If that’s not magic, I don’t know what is.