So I did it again.

I heard it was gonna rain. It was an “off” day for the gym, and I had planned to walk, but with this happy news, I decided I’d be smart to go out and sweep leaves again. That way I’d kill two birds with one stone: I’d get a nice, upper-body workout (we have a big yard) and not have to face the danger of slippery, wet leaves plastered onto the cement later.  

(An aside: We don’t have any grass. We have a long, seriously steep driveway, cement walkways, and two cement patios, front and back. The rest of our God’s two-thirds-of-an-acre is given to several gardens and a small home orchard. Anyone need pomegranates or persimmons? We have several tons…)

The “threat of rain,” as you might have figured out by now, inspires me to feats of broomy heroism in the fall. By autumn, you see, it’s been so long since I’ve seen water falling from the sky it’s like a bloody miracle. I’m not really rational about this. I absolutely love rain. I even loved it when I lived where it rained almost constantly. But here in Northern California, we’re working on the fourth year of an extended drought, and rain has taken a powder. It’s rare as hen’s teeth.

And so when I hear that rain is imminent I must take action, anticipating the miraculous event.

I spent about four hours outside yesterday, wielding my broom and, because I could hardly just pass by plants that needed serious fall pruning (I hate branches and stuff smacking me in the face as I walk along the footpath around the house), my pruning shears. From the driveway, the front walk and the back patio I swept up a huge pile of crackly dead leaves, and I did some further serious trimming-back of the wisteria and blackberry bramble that forms part of what I call our “hedgerow,” which separates our property from our neighbor’s.

The day was delightfully cool and sunny. The air smelt lovely. There was a nice breeze kicking up in advance of the cold front that was moving toward us off the Pacific. The jays were squawking at each other, and at me, and overhead extended V’s of Canada geese flew over, headed for wherever they head each fall. I was happy as could be.

And yes, my hands and wrists twinged and hurt as I worked. That’s de rigueur these days, though. No big deal. Life goes on, you know?

I swept leaves until I’d worked up a good sweat and then swept some more. About three quarters of the way through the task it occurred to me that I was getting tired. Like, seriously tired. More tired than I should have been. After all, this isn’t heavy labor. It’s bright, active work that doesn’t require brawn as much as perseverance. But I couldn’t just stop. The afternoon was sliding quickly toward evening. I needed to finish, then pick up the piles of leaves and get them into the green can for the trash-pickup next week. If the piles of leaves got wet, that was going to be a true pain in the arse.

Well, the sun was nearly down by the time I finished up. I put away the broom, the pruning shears and my pitchfork. I rolled the green can back to it’s place at the end of the drive. I shook my fist at the trees, which had dropped a few more dead leaves onto the driveway while my back was turned.

I went inside, called ahead to the local pizza joint, washed up and then took off to pick up dinner. Ate. Fell into bed.

Today I’m gimping like an old lady. I’ve got more owies than a five-year-old. But you know what? I’m proud of myself. I got this big job done in spite of rheuma and in spite of my own, natural laziness. Of course, it hasn’t rained yet today, and now the weatherguys are saying it will mostly stay north of here. But it’s overcast and it looks like it could …

Tomorrow morning I have an appointment with my rheumatologist. We’re going to talk about my hands, and my feet, and how I can’t open my mouth very wide because my jaw is flared. We’re going to discuss how the rheuma seems to be ramping up and up, and how maybe the Arava and sulfasalazine aren’t quite cutting the mustard anymore. We’re going to talk about the possibilities of physical therapy. Of acupuncture. Of more efficacious pain meds. And how I’ve been exercising my body at the gym and at home, wrestling autumn leaves.

I’m looking forward to a positive and productive appointment with him. He’s a good doc. I like him. So we’ll see how it goes.

Oh – and thanks for stopping by. I love hearing from you.

I’m getting ready for my morning workout at the gym. I’m dressed in my sweatpants and t-shirt, I have my athletic socks on (sounds so jock, doesn’t it?) my feet and my hair’s up in an out-of-the-way ponytail. I’m gonns move! I’m gonna burn up the mats! Blow out the excercise machines! It’s gonna be sweat city!At this rate, I’ll be buffed in no time!

Well, yeah, but first I have to get there. My machine, my body, isn’t running real great this morning. Before I even pushed back the quilts and sat up, I was noting how I hurt here, and here, and here. Hands were all swelly. Couldn’t slip my ring over my knuckle. The bottoms of my feet felt like I’d been standing barefoot on gravel all night. I opened my eyes and gazed through the velvet dawn light at the ceiling. The cat snored softly, curled up in a ball between my neck and shoulder, warm as toast. How nice it would be, I thought, to just stay right here. Don’t move. Go back to sleep.

But it’s gym day. Yesterday afternoon I walked three miles. Could be why my feet are grumbling. And today I need to move the rest of me. Arms. Abs. Shoulders. Glutes. Deltoids. All those other muskles, each of which has a role in helping me stay mobile and, with luck, not hurt quite so much.

Phooey. I got up. Slowly. Did my thing. And here I am, sipping my first cup of coffee for the day and anticipating the coming workout without much enthusiasm.

But it came to me as I was brushing my teeth that if I don’t go, even though I’m a pile of owies this morning and that’s a good excuse for resting, I won’t like myself for caving. It will bother me all day, particularly after the morning stiffness works itself out. I could go later, sure, but I know myself too well. I won’t. So it’s go now or be a lump.

A sad, achy lump.

OK. I’m putting my shoes on. I’m grabbing my purse and car keys. I’m gimping out the door …

I’m in the reluctant process of re-learning how to accept others’ reaction to my old enemy, rheumatoid arthritis. Honestly, I’d forgotten how uncomfortable people get.

Because I’ve always been a very empathetic person, I understand others’ discomfort when confronted by my disease. Like many people with RA, I get tired of the same old responses, like “you’re too young to have that!” but considering that our culture sees RA as a disease of the elderly, I can’t really blame people for that response. When I’m in the right mood, I just inform them of the truth. When I’m not, I shift the conversation to make it about them instead. Works like a charm.

Yesterday during my morning workout one of the women there asked me how my weekend went. For some reason, I told the truth rather than trotting out the more polite and distant “just fine” response. “Not great,” I said. “I have rheumatoid arthritis. It kept me down this weekend.”

“But you’re too young!” she exclaimed. (Actually, I sort of like this response now that I’m 53. I look too young for RA? Cool!)

 “Well, that’s what I said too,” I grinned as I did reps with my legs. “I was diagnosed when I was 31. Actually, it can hit at just about any age.”

Her eyes widened. “Oh my god. Where do you have it? In your hands? My grandmother had it in her hands.”

“My hands, my wrists, my jaw, my shoulders, hips, knees, ankles and feet. Mostly not all at once, thank goodness.”

She complimented me for working out in spite of it, so I told her that some days are better than others, and how I’d been frustrated and aggravated on Friday and Saturday because I hadn’t been able to go because of the pain.

“Does it help to exercise?”

I nodded. “It strengthens the muscles we need to move and helps keep the joints themselves from stiffening up permanently. I’ve never liked to exercise much, but I guess I’m finally mature enough to do it anyway. I’m exercising for my independence. I’m fighting against being disabled by RA.”

“I think that’s a great attitude,” she said. At that point I changed the subject and asked her how her weekend went. She told me, launching into a detailed account of what she and her family had done and where they’d gone. We talked and laughed for a while as we worked out on the machines, a couple of friendly strangers. Finally, she finished her workout, wished me well, and went on her way.

I’m aware that I was lucky in this particular instance, and I’m pleased that one more person in the world understands a little more about RA now, whether she wanted to or not. In the past when I’ve been honest and opened up about rheuma, I’ve seen people’s eyes glaze over before I’ve finished the first sentence. To spare them having to listen (when it’s obvious, at least to me, that they’d rather not), I change the subject. I can’t blame them for not wanting to listen to me whine.

But having to keep my battle with rheuma to myself hurts sometimes. It’s lonely.

Each member of my family reacts a bit differently. My daughter is empathetic, a trait I guess she got from me. And she also has RA, though it’s been mild so far and hasn’t been diagnosed as such yet. She understands the on-again, off-again, migratory nature of the pain, and how intense it can be at times. Her fiancé has had two rotator-cuff surgeries on his shoulder in the last year, so he’s also sympathetic about the pain and occasional disability it causes. My husband, however, is like most other people when it comes to my fight with RA. Most times his eyes glaze over.

I understand his reaction. He retired early several years ago because of disability caused by osteoarthritis and fibromyalgia. He’s frequently in pain, and he takes a truly stunning number of drugs to fight the physical conditions and the other problems they’ve caused, such as depression. The pain meds he takes daily have made him foggy-minded and slow. And he’s basically given up trying to maintain or improve his fitness, strength and mobility. He’s closed in on himself, obsessing over his troubles, and has become a frustrating hypochondriac. And while he’s ready to talk about his own health problems in great detail, he has very little interest in mine.

Absolutely any discomfort I mention, he has as well, only his is far worse. To be perfectly honest, my eyes glaze over, too.

What a shame, really. The result is that we both feel isolated and alone. But you know, he wasn’t always like this. He used to be a loving, caring and compassionate man, full of life and laughter. He was strong, fit and active.

Illness has changed him profoundly. So perhaps it’s time we both worked on this – we need the others’ love and support.

Because I was fortunate enough to have a decade-long remission of the disease, I’d forgotten how hard it is, sometimes, to talk about it. During that first long battle with rheuma I frequently pushed myself too hard, stressing and likely making it even worse as I tried to ignore or deny its effects and keep them to myself. But this time, as the rheuma ramps up again, I’m taking a different approach. I’m being open and honest about how I feel from day to day. I’m accepting my limitations. It’s still difficult, but I’m learning. Each day brings new revelations.

“But you’re too young!”

WoooHooooooo! Now that’s the kind of news I like.

Oh, that low, mean ache.

It’s like both my hands are nauseated.

Yesterday was not much fun. Hands were ugly-sore. My right shoulder twinged and stabbed when I moved. I’d hoped to go for my workout in the morning, but had to bow to the rheuma  dragon once again. Even driving to the gym would have hurt too much.

It was the second day in a row. My hands had been bad on Friday, too, so that day I took a two-mile walk in lieu of my whole-body workout. It felt good. I’d outfoxed the RA dragon. Oh, was I clever!

But I had to concede defeat yesterday. I didn’t berate myself for it (much). After all, I told myself, I’d been busy and productive in spite of the beast for almost two weeks. I’d just take a good rest. So there!

I was pleasantly surprised when I found, as I got out of bed this morning, that my shoulder was once again pain-free and my hands only ached a little bit. In spite of not sleeping very well! I got dressed, trying not to let myself get too excited. But hey, the longer I was up, the better I felt. I started making plans for the day: grocery shopping, some work in the garden (including more leaf sweeping), housework. Strip the beds, do laundry. Carpets need vacuuming and the floors swept. Bathrooms need blowtorched. And when all that was done, I’d put on my walking shoes and set off on another two-mile walk as a reward.

There was a time when a long walk would have seemed like a tedious chore, not a reward. It’s the small things I’m grateful for, you know?

I made breakfast sandwiches for myself and my daughter, Cary, who works on Sundays. It was while I was cooking the egg for the second sandwich that the ache in my right hand suddenly intensified. No warning.

I yelped and swore. It always helps, at least mentally.

I finished making breakfast. The ache persisted. It ramped up. I washed up the dishes using the hottest water I could stand, letting it stream over my hands.

And now it’s nearly mid-day. What I can do is limited. I can type as long as I rest my hands every couple of sentences (and cuss under my breath). I can’t lift the electric kettle to pour hot water for tea, though. Hubby had to do that for me. I can’t open the fridge. Hubby tied a dishtowel around the handle, looped so I can slip my hand through and pull the door open with my arm.

He forgot to do one for the freezer handle. I can’t open it, either, but he’s off to get a couple of quarts of goat milk from a local farm and run a few other errands. I’ll ask him later. I don’ t need anything out of the freezer right now, anyway.

With rheumatoid arthritis you never know what to expect. One of the more frustrating and aggravating aspects of the disease is its sheer unpredictability. One day – one hour, even – you’ll be feeling just fine. The next, not so much. One day – or minute – the pain will be merely an annoyance, a persistent, sharp-toothed rat nibbling on the edges of your consciousness. The next, the rat has turned into a hyena with steel jaws and a sledgehammer.

All utterly invisible, of course. If you’re not careful, people will think you’re being a bit melodramatic. Even slightly nuts.

Still, I’m not in a truly dark mood. To stave that off, I’m forcing myself to look at the bright side. My shoulder IS good today. I can walk without pain, so I’m looking forward to hitting the El Dorado Trail late this afternoon with Cary. The weather is gorgeous – mid-70s, breezy and sunny. Perfect for another two-mile tramp. The crackly dead leaves will still be scattered all over the patio tomorrow (along with about a ton more). Meh. They can wait. So can the housework. I’ve got a couple more days before the mess is so bad that the Housework Police will threaten to shut us down. Until then, we’ll get by.

As soon as I’m finished writing this, I’m going to go dip my hands in hot paraffin, close my eyes and meditate while the warmth soothes their nagging belly-aches. Then I’ll have a nap.

Happy Sunday, everyone.