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.

It’s a pretty morning here in the Northern California foothills. Last week included temperatures that soared, for two blistering days, into the triple digits, but it’s a soft, sweet 75 degrees right now. All clear sun and cool shadows. The scent from the oranges in the basket on the counter drifts lazily around the room. The scent fits.

As I fill a pot full of cold water for our morning coffee, I look out the kitchen window and see, in

If you look closely, you can see the skunks next to the spa house...

the dappled garden next to the spa house, a close-knit little family of skunks. They’re busy foraging in the soft, cocoa soil for goodies. Are grubs tasty? To skunks, maybe.

Yes, I said skunks. A momma and three nearly grown kits. From my vantage point, they’re a blob of furry black with four brilliant white stripes. I’ve seen them several times now, usually about mid-morning. I think they live underneath the spa house. Each time the skunklings have grown a little bit bigger. I wonder if they’ll share the home territory with Momma once they’re adults. And will she have more kits later this summer? If she does, where will we put all the skunks?

I haven’t written here much lately; in fact, I can’t believe my last post was at the end of May. I’ll try to write more often in the future, but for now, I’ll just catch you up on the latest.

Back in April I took a couple of week-long prednisone tapers, separated by about two weeks. The idea was to finally beat the dull, constant bursitis hip pain I’d been having for months and months. After a delay of several days, the second taper actually worked. My pain lessened and lessened, and finally, was pretty much gone. Halleluiah! It was so nice to be able to move, walk, sit and sleep without pain.

May was pain-free and terrific. The first couple of weeks in June were, too. But last week the bursitis pain returned, along with some amped-up rheuma pain in my hands and, I think, my right hip. The two types of pain are quite different. This new pain, while only moderate, felt like it was deep inside the hip-joint, knife-sharp and un-ignorable. It stayed around for a day and then, thank goodness, disappeared. In the meantime, the renewed bursitis pain continued unbated: a low to medium-severe, diffused ache that runs along the outsides of both hips from seat to knees. The right side generally aches more intensely than the left.

At night, it keeps me wakeful and rolling from one side to the other, trying to find a comfortable position. The nortryptaline my rheumatologist prescribed helps, but not consistently. Asking for a higher dose or a different  type of sleep aid is on my list of things to ask him about when I see him again next month.

I’m also going to tell him about the more painful flares I’ve been having in my hands lately. Along with the continuous, low-level soreness (which is mainly just annoying) I’ve had several bouts of deep, sharp pain focused  in my right thumb, pointer and pinky fingers. It’s pain that’s instantly reminiscent of The Old Days, when my rheuma was horribly active and severe. Fortunately, these flares have been relatively brief, the longest lasting about 12 hours. In The Old Days, the bad flares would last anywhere from 24 hours to four days. I never knew what to expect.

So, ol’ Wren is a bit gimpy right now. But my mood is sunny. Last week Mom and I went to the local retail outlets, where I’d discovered there was a Merrell* store. The company makes incredibly comfortable shoes; I’d read about their “barefoot” shoes on Cathy’s blog, The Life and Adventures of Catepoo. Her posts piqued my interest, not because I want to walk “barefoot,” but because the shoes just sounded so good for rheuma-feet. Like most of you, I can’t wear most shoes, and pretty shoes with heels are out of the question. As a result, I have a few pairs of practical, comfortable and plain shoes that I wear nearly year-round. Most of them are at least three years old; the oldest top 10 years. Pathetic, eh?

So, the Merrell outlet. Now, I have to say, these are not “beautiful” shoes. They’re made with people who drive hybrids, wear eco-friendly clothes and shop at Whole Foods in mind. Fit, slim, well-paid thirty-somethings (and boomers, of course) of both genders who hike on the weekends in modified baseball caps and perspiration-wicking cargo shorts, their daypacks full of Vitamin Water and maybe a doobie or two tucked in amongst the trail mix and dark chocolate squares. So, not actually beautiful, maybe, but Merrell’s shoes are still pretty good-looking. What I was hoping for was a pair of presentable new shoes that were light, cool for summer, and above all, wearable on feet that hurt in almost any shoe that’s even a little bit attractive.

To my total delight (thanks, Cathy, for the tip!) I found two pairs of Merrells that work for me. Neither were their “barefoot” shoes, but no matter. One is a pair of sandals; the other a pair of grippy-soled Mary Janes with mesh uppers, good for extended walking and standing. Both fasten easily (and adjustably) with Velcro, and both can be worn for everyday or, in a pinch, with clothes that are a little nicer for the occasional evening out, as long as it’s not at a really fancy place.

And wow, are they comfortable. The fit is so good, and the shoes so nicely made, and with such excellent arch support and firm, cushioned (yet lightweight) soles, that it’s easy to forget they’re even on your feet. If that sounds odd, keep in mind that often, with rheumatoid arthritis, forgetting your fickle, painful feet is impossible. Most shoes do hurt them in one way or another.

The one drawback: Even purchased at their outlet store, Merrells are pricey shoes. The sandals were $90; the Mary Janes, $80. Mom (that sweet lady) bought me the sandals. I just couldn’t afford both pairs at once. “Call it an early birthday present,” she said.

These two pairs of new shoes will get me through the hot summer ahead. I hope to go back to the outlet in October and get another pair or two for winter wear.

In other news, we just celebrated my daughter’s 30^th birthday; I’ve lost a total of 23 pounds; Mom and I are growing a tomato plant on the back deck that’s thriving and already has one small green tomato on it; Mom is feeling much better most of the time, but has become very forgetful so that I feel uncomfortable leaving her alone for more than a day at a time; and back home in Camino, Mr Wren has added another large dog to the mix (Finny, Shadow and now, Jake). I imagine the chaos and am grateful that I’m here instead of there for the time being.

That’s enough updating for now, I think. Thanks for reading. I’ll be sure to post again soon.

*Merrell is not paying or in any fashion rewarding me for promoting their shoes on my blog. I just want to pass along a really good find to people of both genders who, like me, search for shoes they can wear comfortably on feet made painful and sensitive by arthritis.

It’s Memorial Day, a day Americans set aside to honor and remember the thousands of men and women who’ve lost their lives in service of our country. As someone who served in the military, Memorial Day has long held special significance for me. But now it’s a particularly sad day: My cousin, who’s in his mid-30s, just lost his dear friend Dan (not his real name).

He and my cousin Jim grew up together, born only a few months apart. They lived on the same suburban street. They were like brothers as children and youths, and as adults maintained their closeness even as their chosen careers took them in opposite directions. My cousin is chief of staff for a Democratic California state legislator.

Dan was a Green Beret. He died in Afghanistan yesterday.

I understood why America sent combat troops to Afghanistan after the horrific terror attack on our country on September 11, 2001. The mission to destroy al Qaeda terrorist training camps in the wilds of Afghanistan and hunt down al Qaeda leader and Sept. 11 mastermind Osama bin Laden was, even to a life-long peacenik like me, right and just.

My opinion is that keeping U.S. troops in Afghanistan after the camps were obliterated and bin Laden escaped was, and still is, a terrible mistake. It’s hard for me to understood why, after nearly 10 years, we are still sending our soldiers there to fight and die. I know the Taliban are very bad people. But they are what the people of Afghanistan know and understand. Their culture and society is the polar opposite of our own and always has been. Wanting to bring democracy to them is a noble undertaking, but doing it at gunpoint defeats the purpose, doesn’t it? How do you force freedom? Isn’t that an oxymoron?

Dan, obviously, believed much differently. This was his second assignment to Afghanistan, and he was excited about going back. He wasn’t allowed to tell his family and friends much about his upcoming mission, but said that he’d be working closely with Afghan tribal chieftains, wearing Afghan attire so as to mix in easily with the locals. He went through months and months of special training for the assignment, and recently emailed Jim a gleeful photo of himself sporting a new, thick beard. I’ve found an Associated Press article that talks about what the Special Forces, which includes the Green Berets, are doing as part of Operation Enduring Freedom in Afghanistan. It sounds very much like what Dan said he’d be doing, as cryptic as it was. You can read the article here.

Dan had been in country for only about three months when he died.

I wasn’t around much when Jim was growing up. In the Air Force when he was a toddler, I later lived and worked in Germany for six years. When I came back to the States I went to work as a journalist in another city. I saw him only during holidays. He went away to college, went to work, got married, had two baby boys. But Jim’s best friend Dan always figured large in my aunt’s stories about Jim over the years, and I saw her much more frequently. She and Dan’s mother became dear friends, too.

I finally met Dan at Jim’s wedding five years ago; he was Jim’s best man. I remember a tall, dark-haired, handsome, quiet young fellow with a natural, innate gentleness that seemed incongruous to me, given his profession. There was also a glint of mischief in his warm, brown eyes when he smiled. I immediately liked him, and I understood instantly why Jim loved him so.

I’m sad today, knowing that Dan is gone forever. My heart breaks for his poor mother, who I’ve also met and like very much, and for my aunt, who loved Dan, too. But most of all, my heart breaks for Jim. He’s devastated. A single child, he’s lost his brother.

As a kind of consolation, I remind myself that Dan’s career was serving his country—and he was doing the work he loved when he died. His hard work and dedication earned him the distinction of being a member of an elite, very select group of Special Forces soldiers, the legendary Green Berets. According to Wikipedia,

“The United States Army Special Forces, also known as the Green Berets because of their distinctive service headgear, are a special operations force. Army Special Forces are tasked with six primary missions: unconventional warfare, foreign internal defense, special reconnaissance, direct action, hostage rescue, and counter-terrorism. The first two emphasize language, cultural, and training skills in working with foreign troops. Other duties include combat search and rescue (CSAR), security assistance, peacekeeping, humanitarian assistance, humanitarian demining, counter-proliferation, psychological operations, manhunts, and counter-drug operations …”

I’m guessing that like all human beings, Dan didn’t really believe in his own death. Sure, we all know that we’ll die someday, but it’s an intellectual concept, one that, until we do die, we can only understand second-hand.  At 35 years old death is still an abstract, it-won’t-happen-to-me concept—even to a realistic, combat-tested soldier like Dan. Yet he knew the risk he was taking. He knew he’d be in constant, deadly danger.  Dan went willingly into harm’s way in spite of the risk. He believed in his mission, which was to fight terrorism while helping the Afghan people understand and choose democracy over feudalism, and to encourage them, as a nation, to become a friend and ally of the United States. Such accomplishments can only bring benefits to America, including our increased, long-term security.

I don’t know if such an outcome in Afghanistan is possible. The Afghan people have lived under religious and secular oppression for literally thousands of years; it’s their history and an integral part of their culture. But Dan believed in the possibility. He worked to make it happen and in the process, lost his life.

I sincerely hope he was right. Dan was courageous and patriotic, tough but gentle, a beloved friend and loving son. He’s gone, but he lives in our memories. And he’ll always be a hero.

Thousands upon thousands of American soldiers have lost their lives while serving in wars and conflicts since the United States of America declared independence on July 4^th, 1776. Since the conflict in Afghanistan started nearly a decade ago, 1,517 men and women have died while participating in Operation Enduring Freedom (numbers via iCasualties.org *) Fifty-four U.S. soldiers have lost their lives in Afghanistan just this month (and maybe more, as Dan’s name has not appeared on the iCasualties list of the fallen as of this writing).

In Operation Iraqi Freedom, 4,454 American soldiers have been killed to date, serving in Iraq. They, and those who died in Afghanistan, were sons and daughters, brothers and sisters, moms and dads, cousins and nieces and nephews, aunts and uncles and yes, dear and much loved friends.

Today is Memorial Day. Take a few minutes out to remember and honor the many American citizens who’ve made the ultimate sacrifice for their country—and for us.

It’s Mother’s Day.

I’m spending it with my mother and my aunt at my mother’s townhouse. Mr Wren is coming over later with a gift of fresh-laid eggs from our hens. We’ve no plans except to be willfully slothful.

Two days ago it was California-May hot outside: 91 degrees, dry as a bone without a breath of breeze, a scorched, hazy sky like thin, bluish milk overhead. The reality: There are six months-worth of days exactly like it or even hotter about to begin.

We’ve had no actual “spring.” The season shifted from California’s semi-wet, cool season to its dry oven-season almost overnight. No gentle transition here. And yet today, Mother’s Day, a cold front slipping down from the Pacific Northwest has obscured the sun with a high, thick layer of gray clouds. Rain makes empty threats, but the temperature is 25 degrees lower than yesterday.

I’m truly grateful for this brief reprieve from the oncoming, oppressive summer heat. The temperature may just touch 70 degrees by late afternoon. My mother, who’s been dreadfully sensitive to cold all her life, is tucked up under her electric blanket-throw on the sofa, the furnace blowing thick, warm air from the ceiling vents. It’s 73 degrees in her living room. She looks out the window at the cool gray, mid-fifties morning and shivers.

“It’s just like winter out there!” she exclaims, tugging the throw up around her neck.

I smile and say nothing. Winter in the Central Valley of California is like summer in Northern Germany. I have a warm coat, purchased last fall with a vague hope for temperatures low enough to need it, that I never wore once during the cool months. It’s still on the hook near the garage door where I hung it in late October, untouched. I imagine that there are small house spiders living in the sleeves, hoping for gnats to wander in to stick in their hidden webs just the same way I hoped for the cold.

To honor this final cool day, and Mother’s Day, I’ll make a pot of fresh, hot vegetable soup for our supper. We’ll have some crusty bread along with it, too. The soup will warm Mom’s tummy and please my vegetarian aunt. And if there’s any left over, we’ll eat it later this week, refreshingly cold, straight out of the refrigerator as we celebrate the rising outdoor heat and (me with resigned reluctance, Mom with real joy) the long, long California summer to come.

Happy Mother’s Day, everyone.

“Is there anything else you want to tell me?” Dr. McA asks. We’ve already been through the usual: How my RA—and the hip bursitis—are treating me; what, if anything, hurts; the medications I’m taking and how I’m tolerating them. I’ve ticked off most of the questions on my list.

One item, however, remains.

“I just want to point this out,” I say as I draw a line through it and look back at him. “The Arava has made my hair curly.”

There’s a short silence, and then Dr. McA explodes into delighted laughter. “Yes!” he shouts, and laughs some more. I laugh too. It’s impossible not to.

“I’ve had many of my patients tell me that,” he says, catching his breath. “They say, ‘Doctor, I don’t have to straighten my hair anymore!’ or, like you, their hair is curly where it used to be straight.” He chortles again, thoroughly enjoying himself, then sobers. “It really shows how serious the chemicals are in that medication, doesn’t it.”

“It sure does,” I agree.

“I’m sorry about your hair.”

“Oh, no!” I laugh. “I love it! I’ll never have to get another perm again!”

And so it went. Dr. McA reaffirmed that my “cocktail” of meds, Arava, plaquenil and sulfasalazine, are keeping my RA under control. The two prednisone tapers, bi-weekly visits to the physical therapist and daily stretching exercises have combined to lower my hip bursitis pain to a low, intermittent grumble. I have two more PT appointments left; I’m satisfied that two will be enough.

Since I last saw Dr. McA I’ve lost several more pounds. I’ve also grown two ganglion cysts, one in my left wrist and the other on the top of my left hand. Finally, I’ve been sleeping better. Thank you for the nortriptyline, doc.

Dr. McA, as usual, was in a jovial mood. He told me that since doing his residency in the early 80s, he’s seen the treatment of RA move ahead in leaps and bounds, one new, effective drug after another. “I was talking to a colleague the other day,” he said. “It occurred to me that I’ve been around to see nearly all the RA drugs we use today developed. I remember when plaquenil for RA was new and cutting-edge. I’ve seen so many people like you be able to bring their RA under control because of them. There’s so much more hope now than there was.” He smiled. “I guess curly hair isn’t such a hard price to pay, is it.”

“No, it’s really not,” I said.

Dr. McA told me to come back to see him in 90 days, unless there’s a big change in my condition. We shook hands and he whisked across the hall and into another exam room.

“Good morning, Mr.  Jones,” he said, pulling the door closed behind him.

“Doctor! Good morning!” The smile in his patient’s reply was clear as a bell. I hope his ailment is under control, too. We’re lucky, I thought as I walked out to my car for the long drive home, my appointment for August clutched in my hand. We’re both lucky we’ve got such a caring, pleasant person as our rheumatologist. Amazing how much difference it makes.

Well, yep, I decided to change Rheumablog’s look again.

I’m blaming it on spring. You know how it is: You just have to toss out the same ol’-same ol’ and try something new. Do some spring-cleaning. Knock down the cobwebs. Out with the old, in with the… well. You catch my drift.

The blog’s pinkish-cartoony-artsy look (the one before last) was nice, but it quickly started looking too cutesy to me. Every time I opened the page, I had to suppress a shudder. So I changed it to that rather serious, dark red theme a week or so ago. It was nice, but dull. So here’s the newest look. I do believe I like it.

But it’s spring. Don’t be surprised if I change my mind.

I just completed a second week-long prednisone dose-pak, hoping once again to demolish the damned hip bursitis once and for all. It didn’t. But there is good news. Several days after the that first round of prednisone, the returned pain started ebbing some. By the time I started the second dose-pak last Saturday, it was down to about half– roughly a four on the 0-10 pain scale.

Now, that’s something to celebrate! My bursitis pain remains at about half what it was a month ago. I hope that this last dose-pak, like the first, will also pack a delayed punch. Maybe the pain will drop a bit further down the scale.

Stranger things have happened.

I’m doing fairly well RA-wise, too. I have occasional twinges and mini-flares, but it seems mostly under control and the meds seem to be working as well as they’re going to. I’m good with it.

In other news, it looks like I’m going to be helping my aunt take care of my uncle three days a week. Uncle J is 80. He’s mostly blind and was partially disabled by a stroke several years ago, and it’s getting harder and harder for Aunt P to do it by herself. I’ll be cooking meals for both of them, taking Uncle J to medical appointments, handling a little light housework, and basically allowing Aunt P to get some much needed rest. She’s had to neglect her own health over the last couple of months, she’s been so busy with him, so this will give her some time for that, too.

It’s odd, the twists and turns life takes. While I’ve always known that one day, my Mom might fall ill and need me, I never expected that she’d need me for as long as she has. And likewise, I never expected that my favorite aunt and uncle would also need my help when they grew elderly. Being unemployed for so long has been hard in many ways. As the managing editor of a newspaper, I was accustomed to being in charge. I loved working with my reporters to hone and punch up stories and I loved putting the paper together each week from start to finish. I loved being busy. I work well under pressure. I loved being needed.

Mom is doing very well these days. Aside from the occasional gentle reminder about taking her meds and keeping herself hydrated, she doesn’t really need me anymore. But Aunt P and Uncle J do. They hold a very dear place in my childhood memories, so I’m pleased that I have the time and the ability to help them. To return some of the love they showed me when I was a child.

One more big news item: I’ve dropped 14 pounds! I’ve just 36 more to go to reach my fighting weight. I wonder if permanently lightening the load on my hips, knees, ankles and feet will have any real effect on the RA? My fingers are crossed.

Happy Easter, everyone!

I have great news!

Did you know that rheumatoid arthritis may be protecting us from getting Alzheimer’s?

Yep, it’s true. Or at least, it may be. Now, I’m a little late in discovering this news: The Journal of Alzheimer’s Disease actually published the study that discovered this possibility back in January. According to a story in the Los Angeles Times about it, “A signaling protein called GM-CSF that is released when people have arthritis may stimulate the body to attack and remove amyloid deposits in the brain.”

Beta amyloid deposits (or plaques) are the hallmark characteristic of Alzheimer’s.

Of course, in real life, no one would want to get rheumatoid arthritis simply to avoid Alzheimer’s Disease later in life—at least, I don’t think they would. I surely wouldn’t. But what’s so great about this news is that if scientists can isolate this protein and confirm that it actually does do what they think it does, then they may be able to reproduce it synthetically and give it to people to help guard against the horrors of Alzheimer’s. They might also be able to figure out how the bodies of those of us who have RA go about producing this particular protein—and perhaps find a way to block its out-of-control inflammatory effect.

I love science and scientists, don’t you? I mean, look how far they’ve come in combating RA. When I was first diagnosed in the late 1980s, very few Disease Modifying Anti-Rheumatic Drugs (DMARDs) were available. There were gold salts, plaquenil and methotrexate; if there were others, I’ve not heard of them. At that time, scientists had only recently discovered that MTX, which is actually a cancer drug, could sometimes slow the progress of rheumatoid arthritis in some people. Plaquenil is actually an old anti-malarial drug; it had been in use for many years for RA, with mixed success. And gold, as an anti-rheumatic, is older still. It’s rarely used anymore and doesn’t work particularly well. I was given plaquenil and oral gold; neither had any effect on my severe RA at the time. I wasn’t offered methotrexate; I think that it was new enough in the late 80s that it hadn’t been added to the U.S. military medical system’s formulary yet (my medical care at the time was being provided by the U.S. Army).

Non-steroidal Anti-inflammatory Drugs (NSAIDs) were the go-to fix for RA back then. I took many different ones: ibuprofen, naproxen, Clinoril, Feldene, Indocin… all to absolutely no effect. Believe me, I was truly discouraged. And, even though my doctor told me that my RA was incurable, I couldn’t believe that none of these drugs did me any good. In fact, the only drugs that did help were narcotic painkillers—and I was allowed only limited doses of those. For many years I deeply resented that. I was more than prepared to become addicted to them as long as they’d take away that awful, awful pain.

But now there are many more DMARDs to choose from, some of them quite effective for many people. They’re the first line drugs to battle newly diagnosed RA now, chosen before NSAIDs. And today we have biologics, too. These drugs are miraculous, targeting specific enzymes and proteins in our bodies that cause inflammation. When they work (and unfortunately, like other drugs for RA, they don’t work for everyone) they work very well, reducing RA symptoms and pain dramatically.

I’m grateful that I’m living in a time when human knowledge is so much more advanced than it used to be. I’m grateful that should my RA get suddenly worse, outwitting the three DMARDs that are currently keeping it manageable, I have the option of taking a biologic medication.

All of these drugs can be risky. NSAIDs can cause stomach ulcers and damage the liver. DMARDs and biologics suppress the immune system. DMARDs may also cause life-threatening liver damage, and biologics may increase the taker’s chances of developing severe, life-threatening infections or even cancer.

Taking drugs like these can be scary. They’re risky. But if taking them can decrease my RA pain and disability and can slow the progression of the disease, then they’re worth the risk, in my opinion.

I’d never choose to have RA in order to avoid Alzheimer’s, and I’d surely not wish either affliction on anyone. But thank goodness for scientists, their curiosity and their perseverance. Perhaps someday they’ll be able to cure, or better yet, prevent Alzheimer’s and rheumatoid arthritis.

In the meantime, I’m glad that my RA may keep me from losing my mind. Whodathunkit?