Went to Costco yesterday and found two thick, fluffy, memory foam pillows for my bed. Since my camp-out at Mom’s house became permanent, I’ve added a thick memory foam pad to the guest bed. It has helped a lot in the long, painful night department. Pillows of the same material, I figured, could only be good.

I was right. I felt enveloped in softness from head to toe when I crawled into bed last night. All of my body’s painful pressure points disappeared. I fell asleep quickly and stayed asleep all night. It was absolutely lovely.

The price—and there is always a price for good things, I’ve found—was hot, sharp pain in my hips and surprising disability when tried to get up this morning. The transition from comfort to not-comfort was instantaneous as I sat up and swung my legs over the edge of the bed. I could walk. Slowly, taking small steps. My first trip downstairs for coffee, yogurt and my morning rheuma meds was dicey. I took the carpeted stairs carefully, one at a time, gripping the banister hard for support, wincing and holding my breath, and as I did, I flashed back to the stairwell to my third-floor flat in Northern Germany, where I lived when I was first diagnosed with RA. This—carefully, slowly, painfully—was the way I’d made my way up and down those stairs each day, usually more than once, since we had a dog who needed walkies. The downward journey was just as hard as the upward, and often more frightening. Stepping down on a flared knee or foot or ankle is an invitation to fall even on level ground. I remember standing at the bottom of those stairs, gazing at them, knowing that if I wanted to get home, sit in a comfortable chair and rest, run a hot, soothing bath and yes, finally take the powerful pain meds that would relieve the pain but make me dopey for a while, I’d have to climb those stairs. And the sooner I started, the sooner I’d be done. So I’d set my jaw and climb. Sometimes the pain was so stunning it made my stomach sick, but I’d climb. I’d lift my right foot to the step, set it down carefully, grip the banister tight as I put my weight on it and do the same with the left foot, so I’d be standing on both feet on the step. Then I’d repeat the action 47 more times, resting and gathering courage on the landings.

The good news is that the hard pain from the bursitis this morning eased after I’d moved around for a while. The muscles in my thighs and that long band of ligament that runs along the outside of my leg between my hip and knee warm up. They stretch after tightening during the night. Bursitis is a much different disease to RA, awfully painful at times but not fearfully so. It’s aggravating, a constant background ache. It sucks energy and grays my mood—something I really, really need to work on—but  even at its worst, bursitis pain barely touches the pain of a bad RA flare.

What I’m getting to is this: Those of us who have had our lives infused and colored by rheumatoid arthritis are strong. Incredibly strong. We live, we meet our responsibilities, we love and laugh, we play and weep just like anyone else—and we do it while bearing pain that would make Schwarzenegger wimper. I’m not kidding. Just think, for a moment, of all the things you accomplish each day. You do a lot. And you do it in spite of the pain.

Sure, sometimes you have to stop. Sometimes the pain becomes too severe, and moving causes agony. During those resting times you and I store up reserve energy, somewhere out there in the cosmos, but handy at a moment’s notice. We know we’ll need it, once the current flare has passed. We might use it in dribs and drabs, a little at a time when the rheuma just makes us twingy and sore, but not disabled. We’ll use it when the rheuma wallops us with a heavy, wet sack of fatigue. We’ll use it at work, forcing ourselves to keep going when what we’d really like to do is curl up under our desk and rock until the pain goes. And we keep going. Keep doing. It’s what we humans do, even the ones with autoimmune diseases that make us live with awful pain.

At this moment, my rheuma is dozing. My hands are only a little stiff, a little achy. My hips hurt more from the bursitis (which is, I’m told by my rheumatologist, a co-morbidity of RA). Unlike rheuma, though, keeping the muscles and ligaments in my legs loose and warm and stretched out helps. And today is a nice, lazy one. There’s nowhere I have to go, and little that I have to do. I’m resting. Storing up spoons. And even though that good night’s sleep last night resulted in hips more painful than I’ve felt in a long, long time, I’m looking forward to my soft nest again tonight. And of course, I hope that the morning pain was just a fluke.

Hmm. I think the same way when the rheuma bites hard and unexpectedly. I hope—even after 24 years—that it’s just a fluke.

I’ve had a busy week. Monday was quiet, but Tuesday and Wednesday I spent at my aunt and

THIS IS EMMA, the newest member of our little cat family. She's about four months old and joins 2-year-old Kitty-Kitty and 14-year-old PIB here at Mom's place.

uncle’s place, making breakfasts and dinners and preparing several freezable meals ahead. Yesterday I headed out early in the morning with Mr Wren to the VA medical center, where he got an epidural injection for pain from a bulging disk in his back. While he was being seen, I went to the lab for my every-six-weeks blood draw. By the time I see my rheumatologist next month, he’ll have the results. With luck my liver function will still be normal, but I expect he’ll see an increased sedimentation rate, indicating more body-wide inflammation. It will, I hope, back me up when I tell him I’ve had quite a lot more pain since I saw him last. A good deal of that pain is from the bursitis, of course…

When they finished with Mr Wren, we went out to breakfast. It was nice, spending that time with him. Then we tackled Costco. By the time we transferred all the groceries from my car to his pickup, we said good-bye and he headed back to our house up the mountain, I was about ready to drop. I flopped into the recliner here in Mom’s living room, both hips aching from the !*@#! bursitis and the joints in my hands, elbows and knees aching and twinging from the even more !*@#! rheuma. I caved and swallowed pain meds. Then I rested for a while.

I got up this morning still aching with the bursitis, but the RA has quieted down. Thank the gods for small favors. I took my usual RA meds and the painkillers again, ate some yogurt so my stomach would behave, got a cup of coffee and settled once again into the recliner with my laptop. Ahhhhhhh…

“Let’s get out of the house today,” Mom said as she came downstairs. “Let’s go do something.”

I covered my dismay with a smile and said OK. It’s terrific that she’s feeling well enough to want to go out. And I have to remember that while I’ve been busy and away from home during the days this week, she’s been home alone with no one but the cats for company. She wasn’t stuck in the house, though. She took herself to the bank and the grocery store, where she bought herself ice cream bars and some cookies. Yesterday she had her hair trimmed and styled. And after she’d napped and I’d rested for a while yesterday afternoon, we went out for an early dinner at the local Chinese restaurant.

Still, she gets bored. Her overall health is up and down these days, so if she’s feeling good and isn’t in much pain from the sciatica, it’s good to give her a change in scenery.

In a little while, we’ll take off for a couple of hours. Maybe we’ll get some lunch somewhere (so much for my diet…) and do a little shopping. Mom loves to shop at Ross and Marshall’s. Then we’ll stop at Target on the way home so I can pick up a few groceries that will help me at least maintain my weight: lowfat yogurt for smoothies, whole grain bread, lots of fresh vegetables.

Later this afternoon we’ll be home and I can rest again. It’s good to be up and about, really. I shouldn’t complain. It’s just that the continuous bursitis ache in my hips wears me down, as does the sneaky pain (and the inexplicable fatigue) from the rheuma. But I like being able to do anyway. Neener-neener-neener–take that, ugly pain. Begone!

Here’s wishing you all a terrific weekend. If it’s hot where you live, I wish you cool relief. Thanks for dropping by.

First–thank you, everyone. Your comments to my last post lifted my spirits and made me smile. It’s so good to know there are people out there who understand and empathize about living with autoimmune arthritis. 

Like anyone else who struggles to be “normal” while dealing with chronic pain and disability, occasionally I go dark and gloomy. I don’t like myself this way; I’m a glass-half-full person, generally optimistic and ready to smile. Glum and sad isn’t “me.”

Summertime always tests me, though. At my own home in the mountains, it gets quite warm, even hot in the summer daytime, but nights are almost always blessedly cool. I look forward to the evenings for the relief they bring. But here at my Mom’s place in the very low foothills just above the wide valley floor, the days are a lot hotter than up in the mountains, and the nights don’t cool down much at all. It’s 10 p.m. as I write this, and it’s still 85 degrees outside. Maybe it’ll drop to 70 by sunrise—and then it will start climbing again. These terribly hot days will last until mid-October. Summer lasts such a long, long time.

When I was kid, I liked summertime. I didn’t mind the heat at all. We lived down in the valley, and when school—which I hated–got out, I became an Indian. Summer meant freedom to run and play, to ride my bike and explore, to go to the library and bring home all the books I could fit in my bike’s basket and read them all at my leisure. Summer meant swimming in the back yard pool at my aunt and uncle’s house, playing Marco Polo with my sister and our neighborhood friends there, drinking iced lemonade and eating popsicles. Summer was the Fourth of July with Piccolo Petes and Fire Fountains and sparklers on the back yard patio just after dark. I went barefoot from the moment school let out just before Memorial Day until it started again the day after Labor Day. My fair skin turned cinnamon, my blonde hair flaxen, my young body fit and strong. We ran through the sprinklers and played tag on the lawn as the sun went down, running and playing and laughing until it was dark and the crickets sang. Sure, there were bee stings and skinned knees and sunburns, but they weren’t so bad. I healed.

Summer isn’t magic for me anymore. Even before I was diagnosed with RA, I’d stopped being impervious to the heat. Hot weather makes me feel sluggish, sleepy and irritable. Going outside is like walking into a solid wall of parching heat. And for some reason, I flare more in the summertime. Or, maybe I don’t flare more, I just hurt more when I do flare because I’m already so uncomfortable.

I don’t know. That makes no sense, really, as Mom’s house is cool and comfortable, kept that way by central air conditioning. I only experience the heat when I step outside. But maybe that’s the problem. I feel confined to the indoors by the heat. I can’t just walk outside and enjoy being out there like I can in the fall and winter. In the cold seasons I can bundle up and go out—I can make myself ready for the cold. In summer, though, I can only take off so much. Even my skin is too much when it’s 95 degrees and climbing.

Ergh. I really need to snap out of this funk, gang. My Mom is feeling fairly well, but I’m staying with her because she forgets to take her meds, or worse, forgets why she’s taking them and decides not to anymore—which can cause obvious problems. Other than that, she doesn’t need me, really, so we’re more like roommates than anything else. I’m able to leave her a couple of days each week to go to my aunt and uncle’s house down in the valley—they of the swimming pool—to cook their meals and do their grocery shopping, and anything else they need done. My uncle had a stroke several years ago that disabled him and took most of his eyesight. My aunt needs a break from the caretaking so she can do some things she enjoys.

Since being unemployed, I’ve come to treasure being useful to someone. It makes me happy to be needed, and it’s been nice to make a little spending money, too. I’m worried that this endless, crappy bursitis pain, coupled with my increasingly painful and frequent RA flares, will hinder my ability to keep helping my relatives. What then?

Indeed.

Well, phooey. I know I’ll get over these blahs. I think I’ll start walking again, even if I’m not supposed to because of the danged bursitis. I’ve lost weight this spring—a real triumph—but I’m stuck in place even though I’m still dieting. A little daily exercise might help me jumpstart things. And I know from experience that a 45-minute walk every morning will clear my head and make me feel better mentally as well as physically. Even if I have to go very slowly and not very far, getting out there will make me feel more accomplished. And if I go early-early, I can be done and back inside where it’s cool before it gets miserably hot.

Dare I hope that I might, just might, re-acclimatize myself to the hot valley weather? That somehow by putting myself out in it, I might learn to like it again? Hmmm. I just need to do it. Slather on the sunscreen and go.

Wish me luck? Send me some motivating thoughts, some peace, some smiles and laughs?

Or… how about a little magic?

Dry nightfall has arrived, finally, after a sizzling hot, seemingly endless day. The fireworks at sundown were an afterthought, Independence Day was already so overcooked. The smell of cordite hangs over the crackly, dark chapparal that surrounds me, waiting for a breath of breeze to waft it away.  With the state of our aching economy and the terrible dis-ease in our politics and government, this fine old day we Americans spend celebrating liberty and democracy seems almost quaint to me. Those words meant something, once, didn’t they.

I don’t like to feel this way: Cynical, growly, a whine trapped behind my teeth.  I ache like my teen-aged country. My personal rheuma-dragon is once again alive and well and gnawing hungry with knifeteeth at my knees and knuckles. He doesn’t stop me from moving, oh no. He just stops my enjoying it. He makes climbing the stairs a grim challenge. He makes standing after I’ve sat for a while winceworthy. He forces gritted teeth and stifled groans.

Damned old dragon.

I put on my cool white headphones and try to lose myself in the intricate music of the Celts. There must be a patch of my mind that’s Irish or Scottish or Welsh. This crisscrossy, nimble, heart-tuggy and sometimes wailing music speaks to my restless soul. I’d dance to it, but I can’t.

Don’t mind me. For the first time in years I’m being my way through a Vicodin-fog. I’m grateful for my prescription for the stuff, don’t get me wrong. Lately pain has come to assault me with a capital P. This strange opiate detachment from the hurt (it’s over there) is weirdly pleasant but artificial; it cannot last. It won’t last. Instead, it’s past time for me to explore some other alchemal concoctions to calm and tame my reawakened rheuma-dragon, some that are less fickle and habitforming, preferably narcotic-free. I shall soon consult my doctor. He’s the wizard. He holds my spirit between his gloved palms. I wonder if he knows.

In the meantime, I’ll see your pain and raise you two aches. I have big stretches and know how to use them in cadence with whispery moans. Frosty icepacks wait for my ginger fingers to pluck them from the freezer, ready to numb my hip-bursae to the bone. Ah, sleek rheuma. Ah, knobbly bursitis.

Ah, sizzling, painful July.