The expedition

I took my uncle to his physical therapy appointment yesterday. It rained on the way to pick him up, then on the way to the medical center, and it was still raining as I unloaded his lightweight transport chair from the trunk of my car. Not complaining, though–I love rain!

An aside: This chair is probably 10-15 pounds lighter than his regular wheelchair. He bought it out of concern for me, not wanting Drive-Travelite-Transport-Chair-tc005me to hurt my back trying to lift his regular chair into and out of the car. The new chair has small wheels, footrests, and handles on the back for pushing. It moves easily, but is harder to push overall because of the small wheels.

I unfolded the chair and brought it around to the passenger door so Uncle could get into it. And we were off, both of us exclaiming about the windy rain. To me, it felt delightfully cool, the chilly tingle of the raindrops on my face and hands exhilarating. To Uncle, however, the rain and wind quickly became too cold. You’d think I’d realize by now—caring for him and my mom, both of them octogenarians—that they get chilled easily, their skin paper-thin. If I’d been thinking, I’d have taken the time to search for a closer parking space.

But, too late. We were about two long blocks from the physical therapy building, at the other end of the medical center campus. I decided to head first for the main entrance, which wasn’t too far away. That way we could walk most of the distance through the dry, warm inner halls, at least.

And here’s where I experienced, first-hand, poorly planned disability accommodations. Although the space I’d parked in was one of a bank of nice, wide handicapped spots, each with extra room on either side for loading and unloading, there was no accessible sidewalk. I had to wheel Uncle along the side of the single-lane, one-way, rough-surfaced, asphalt street, with cars passing uncomfortably close to us. Unbelievably, the VA medical center had neglected to provide a safe, smooth walkway for disabled patients to travel on from patient parking to the facility. And I’d estimate that a quarter of the vets it serves are disabled.

Although Uncle was wearing a jacket, by the time we made it inside he was cold. And to my dismay, five minutes of pushing his transport chair had awakened my rheuma-dragon. He was now aggravated and gnawing on my knuckles with hot glee.

Still, pushing Uncle’s transport chair was easier on the smooth facility flooring. I gritted my teeth and kept on, knowing I could rest my insulted hands once he was at his appointment. As we reached the doors at the far end of the facility, I figured we were almost home free. Just one more brief walk through the rain and we’d be there.

barrier fencingI hadn’t taken into account the continuing construction work going on all over the campus. Our local VA medical center has, over the last year or so, added several new buildings, a covered parking garage, and covered outdoor parking (which was all full when we arrived!). And the work is still progressing. As we came out the far door of the main building, we discovered that the usual walkway was blocked off with barrier fencing, forcing us to go all the way around what was once a parking lot to the new physical therapy building. Our first try for the entrance was a dead-end sidewalk. We turned around and went back. (cue in wind and rain here.) To my further dismay (and Uncle’s), we discovered that the only way to gain entrance was to walk all the way around the building so we’d be approaching it from the opposite direction.

A simple opening in the barrier fencing would have made that long, long walk unnecessary.

By the time we finally made it into the building, Uncle and I were both wet—and he was shivering uncontrollably with cold. My hands were aching like you-know-what. I helped him take his jacket off and draped it, warmed by his body, over his legs to help warm him up. It worked. Uncle was remarkably mellow—even cheerful—about the whole debacle.

When we left the physical therapy building an hour later, the rain had stopped and the sun was out. I had to put my sunglasses on. (I love springtime…) We went back to the main building and stopped at the lab so Uncle  could have blood drawn for one of his upcoming appointments. And then we made it back to the car without any further trouble.

By the time I got home—smack-dab in the middle of rush-hour traffic—I was exhausted. My hands were stiff, painful claws at the ends of my arms. I won’t deny it. I took drugs.

Today I’m still pretty fracked. My hands are swollen and tender, but much better than last night. A nap is in order this afternoon. But there’s a part of me that’s proud of getting through yesterday’s challenge tired but still smiling. Life would be pretty dull without a little hassle now and then…

…right?

 

 

 

 

A welcome watering

Oh, my. It’s storming outside the window. Rain is pummeling the roof, spattering against the window-glass, driven by the wind. It’s hitting the ground so hard it’s bouncing back up three feet into the air, creating a waist-level mist. Tree branches drip and sway. RainEverything is moving in the storm, reveling in the much-needed water.

Later, I’m taking my uncle to his physical therapy appointment. For the first time in a year we’ll be driving in the rain, parking in the rain, being dampened as we trot into the building. Oh, how good this will feel!

And, unbelievably, my rheuma-dragon is quiet. My always-swollen knuckles are still swollen, but they’re not painful. A gift, this is. Just like the rain.

 

 

A Day in My Life (with Autoimmune Arthritis)

This post will be included in the International Foundation of Autoimmuneleonardohands.jpg Arthritis’s World Autoimmune Arthritis Day Blog Carnival.

I am so lucky.

A day in my life today (with rheumatoid arthritis) is, first and foremost, not as painful as a day in my life was when I was first diagnosed in 1987. Since then I’ve experienced years of truly awful pain, years when my RA seemed to go to sleep and I was blessed with the elusive “remission” we all dream of, and finally, the recent years, when the “dragon” woke up again.

Today, when I wake up in the morning, my body feels stiff, sore and sludgy. The knuckles of both hands are swollen, so I have to be careful not to drop my handful of RA meds when I take them. I pour myself coffee (one hand grasping the handle of the glass carafe, the other supporting it with a potholder) and gratefully, I settle into my armchair. I pick up my laptop computer, open it, and sip coffee while I read over the news of the day, enjoying the peace of the morning—and the fact that I don’t have to rush around anymore …

Not like the old days, when waking up meant stiffness and sludginess, just like now, but it also meant that standing up from bed gave me my first breathtakingly sharp, rude jolt of pain for the day. My RA attacked joints in my feet all day, almost every day. It made every step I took painful. Some days my joints swelled, and I’ve have to wear loose, slip-on shoes. And if I was lucky, that was all I’d have to deal with. If I was unlucky, another joint would be flaring as well: a knee, an ankle, a shoulder, the pointer-finger of my right hand…

Today, by the time I’ve been up for two hours the worst of the stiffness has gone. The Tramadol I took first thing has sent the pain in my hands to a back room in my brain (though they remain swollen and a bit clumsy). By 9 a.m. I’ve finished my coffee and had a little breakfast. I go back upstairs to take a shower and get dressed, and now I can walk up the stairs comfortably. Going to work is a breeze: as a professional freelance writer, my workplace is my desk upstairs.

What a difference! In the bad old days, there was no time to wait for my meds to work. (And since they consisted of NSAIDs alone, they didn’t work anyway.)I was into and out of the shower first thing. Dressing could be interesting; putting a shirt on over a flared shoulder or tugging my slacks up with flared fingers was an exercise in stoic determination. I tried to keep any moans and groans to myself, not wanting to worry my daughter. She was seven. Once I was dressed, I’d wake her up, get her dressed, comb her hair… all those things moms do on school-day mornings. I’d get us some breakfast and pack her lunchbox. Some days that was easier than others. Somewhere in the middle of all that, my husband took off for work …

Today the knuckle at the base of that same index finger is fairly painful—it’s just annoying, though. It won’t slow me down much. At my desk, as I wait for my laptop to boot, I put both hands through a series of exercises, warming them up, getting the joints moving more smoothly. That one knuckle is going to be aggravating.  I take a deep breath, accept it as it is, and get to work.

Back in the late 80s, getting to work meant driving my little stick-shift car. Work wasn’t far away, but driving could be an agonizing—and dangerous!—undertaking when my left knee, or my big toe on my left foot, or any joint in my right hand flared. Some days instead of risking my life or the lives of my fellow drivers, I’d take the city bus instead. But that meant walking several blocks to the bus stop, and then standing there for 10-15 minutes waiting for the bus. Walking and standing were dreadfully painful every day. It felt like I was walking on gravel. And once on the bus, which was always crowded, I’d usually have to stand, hanging on to a hand-strap. By the time I got to work, I couldn’t wait to get to my desk so I could take my weight off my throbbing feet.

Today, my days are pretty darned good in comparison. My feet hurt sometimes, but never as bad as they used to. I generally don’t have flares in any of my larger joints anymore, either. Because my hands are swollen, a bit stiff, and sometimes painful, I can never really forget that I have RA during the day. It’s not like breathing, which we mainly do without even thinking about it. But I’ve got to say right here that I realize how lucky I am. I realize how fast things could change for the worse.

It could happen overnight. Just like the onset did. Just like the remission, when it came in the mid-90s. And just like the way my RA returned after a six-year nap. Like Jack Nicholson in The Shining, there it was, wielding its wicked knife to thrust into my joints. I’m b-a-a-a-a-k!

By tonight’s early evening my hands are a little more swollen. They’ve become more painful, too. The Tramadol isn’t working so well anymore. But usually by then my work is done for the day. No more typing. I can relax, dip my hands in the paraffin bath or microwave my lavender-scented gloves and slip my hands into their soothing, moist warmth. When I go to bed, if I’m lucky—and I usually am—I’ll be able to drift off to sleep without too much trouble.

I try not to remember those miserable, countless nights in the old days. I was often in so much pain there was no way I could sleep. I can remember nights when I stood crying at the bedroom door because it hurt too much to open it. Nights spent sitting on the sofa, rocking, trying to concentrate on the book in my lap instead of the monstrous pain. And other nights spent floating gently in a narcotic fog, aware of the pain that lived in it, somewhere, but thankfully locked up for a few hours.

They’re behind me, those times. And if my luck holds, that’s where they’ll stay.

Drama queen

“If aches and pains are like a light summer rain, arthritis is like a storm, and rheumatoid arthritis is like a hurricane.
–from “Conquering Rheumatoid Arthritis”
by William Bensen, Wynn Bensen, and Martin H. Atkinson

What an elegant description!

Now, maybe this sentence didn’t stun you like it did me when I read it for the first time last night. I just sat there, breath caught, and contemplated it for a while. It’s … it’s … it’s … a perfectly elegant analogy for a rheumatoidhurricane-RA arthritis flare.

For me, RA is the physical equivalent of monster-size clouds and gale-force winds; of slashing, drenching, merciless sideways rain that just goes on and on and on until …

suddenly, it’s gone. And the sun comes out.

And you’re left with the ruins.

When I look at my hands, I see hillocks between my knucklebones where valleys should be. The small, tough muscles feel turgid and feverish, and my skin, which has always been a perfect fit, has somehow shrunk a size. And yet, someone other than me looking at my hands probably wouldn’t see anything “off.” They’d just think I was, maybe, a bit of a hypochondriac. A drama queen.

The damned hurricane is invisible, too.