First, thank you, everyone. It’s so comforting to have such kind, concerned and empathetic friends out there. Your comments make me feel hugged and cared for.

The one thing you can always be sure rheumatoid arthritis will do is change.

When I was diagnosed 24 years ago, I had severe, almost daily and frequently disabling flares in my hands, my feet, and in the large joints all over my body. After about 10 years of this I went into a near-complete, drug-free remission. Why? Your guess is as good as mine.

It lasted roughly six years. I was able to go fishing, hiking and even backpacking in the high Sierras with my family, and to do other things in my work that required a level of physical fitness I simply don’t have anymore. Of course, the remission didn’t last. Rheumatoid arthritis never really goes away. In early 2005 I developed a couple of large, firm, mostly painless lumps over the bones of my right wrist. My GP sent me to an orthopedic surgeon, who identified the lumps as a manifestation of my RA. They were formations of hardened excess synovial matter that had seeped out from between the joints and could, he told me, eventually impair the use of my hand. He recommended surgery, and I had them removed. My wrist healed well and with a full range of motion.

In 2008 I started having occasional low-level pain and flares in both hands and wrists. They slowly got more frequent and grew worse. It worried me enough to seek further medical care, which I was lucky enough to be able to get through the Veteran’s Administration. My new VA rheumatologist started me on sulfasalazine and methotrexate, but the MTX made me feel so awful he switched me to Arava. That combo worked pretty well until a year ago, when the pain in my hands  started ramping up. My doctor added plaquenil to my DMARD cocktail last fall, hoping to send the old dragon back into his cave.

It hasn’t worked; in fact, my symptoms have slowly gotten worse. When I saw him this last Saturday morning, he decided to increase the dosage of the sulfasalazine. We’ll give it three months to work, and if there’s no change or I get worse, we’ll look at other options.

Those do include biologics. My rheumatologist told me several visits back that the VA has Humira in its formulary, and that it’s often very effective. At the time, however, he didn’t want to try it yet, citing my relatively moderate symptoms and the fact that the DMARD cocktail I’m on was keeping my RA reasonably “under control.” (I put quotation marks around the words ‘under control’ because what we who have the disease consider ‘under control’ vs. the doctor’s definition are often two very different things.) He said that as effective as the biologics can be, they’re also dangerous; they can make a person terribly vulnerable to serious infections and other scary, even deadly, side effects. I can wait.

As for the narcotic pain medications, the trouble is that I’ve taken them off and on for so many years that I’ve developed a tolerance for them. They’ll probably work better at higher doses than I’m taking right now, but that will only increase my tolerance level. Eventually, the dosage can’t be increased any further without doing me more harm than good. I’ve long been afraid this might happen someday.

I understand that there are narcotic pain relief patches, etc. available, but so far my rheumatologist has not offered them. Frankly, I’d rather leave such measures for if and when my flares get really, really bad again. For now, I can manage with meds that simply blunt the pain. I’ve just got to stiffen my spine and re-learn to live in spite of it.

I’ll also keep working on mentally preparing myself for many more years of battle with my old enemy the rheuma dragon. But at the moment, I admit it’s tough. I’ve gotten too used to living either pain-free or with more easily bearable levels of pain than I’m having now. Even as I feel the joints in my hands growing hot, swollen, stiff and more and more painful, I don’t want to believe it. As the small joints in my feet twinge and poke inside my skin, I don’t want to believe it. When I find myself suddenly exhausted after just ten minutes in the grocery store, I don’t want to believe it. I don’t want to believe that my RA is becoming malicious all over again.

But I have to, don’t I. So I’ll fight. Don’t worry. And I’ll find my smile again pretty soon.

I’ve always thought of myself as a pessimistic optimist. That is, while acknowledging that things more often go wrong than right, I still stubbornly hope for the best. When it doesn’t happen, I lift my chin and resolutely search out the bright side. I always manage to find one.

As a result, I’ve had a tough time figuring out what to think of my visit to my rheumatologist this last Saturday morning. In a nutshell, what he said was this: “Your RA has become more active. There’s little we can do, but we’ll try. Ditto the bursitis.”

Now, I don’t want to give you the wrong impression. My doctor, who I like very much, was kind and sympathetic. He was, as always, informative. Compassionate. And he was honest, which I appreciate. Still, I couldn’t help but feel like I’d had the wind kicked out of me, even though I knew before I walked into his clinic that my rheuma dragon has fully awakened and is both irritated and ravenous (my elevated sedimentation rate and other indicative blood tests bear that out). Because of the more active RA, the bursitis in my hips is also more painful. I knew that about all my rheumatologist could do was increase the dosage of or change my medications. I knew he didn’t have a magic wand.

Didn’t keep me from hoping he had a secret stash of fairy dust in his pockets, though.

Well, he didn’t have any of that, either. Instead, he increased the dosage of the sulfasalazine I take. He prescribed a couple more steroid tapers for the bursitis, since those had a limited therapeutic effect last time. Since my pain has been elevated along with the inflammation, I mentioned that my old friends tramadol and hydrocodone haven’t been working as well as I’d like, hoping that Dr. McA would have a magic bullet for that, too. Well, no. Instead, he asked if they lessened my pain by at least 30 percent. I told him they did. Just. He smiled and told me gently that a 30 percent improvement is the most they expect from these painkilling medications. “Nothing will relieve all the pain,” he said.

Right. I knew that. I’ve always known that. But those meds used to relieve quite a lot more than 30 percent; in fact, they used to effectively smooth the sharp, jagged edge of the pain down, making it very much easier to bear. But lately they merely blunt it a little.

He renewed my prescriptions for both analgesics, adding enough refills to last until my next appointment. And then we were done. Dr. McA wished me well and moved on to his next patient.

I know I’ve been very lucky, what with my years-long remission and, since it reactivated, with the way my RA has been kept under “control.” While I’ve had some pain since the dragon started stirring again way back in 2005, it hasn’t been too bad. In fact, it’s been fairly easy to be cheerful and, yes, optimistic about it, particularly since there are now so many different, hopeful treatment options for the disease. Many of them didn’t exist when I was first diagnosed in the late 1980s. The medications I was given back then—mostly NSAIDs—did nothing. I suffered awful, frequently disabling pain. The only things that helped were the various narcotic pain relievers, those soft, opiate angels with names like Codeine, Vicodin and Percodan. Knowing that there are now more viable options for effective treatment has been a huge relief.

So today I’m having more and more frequent flares, sessions that feel increasingly as painful and drawn out as those I used to have pre-remission. And now I’m told by my rheumatologist that, basically, I’m just going to have to tough ‘em out, just as I did in the past.

It all leaves me a little breathless. I know I’m just going to have to readjust my thinking and start looking for my silver lining in different places. I’m going to have to resign myself to enduring heavy pain again, and more disability. And I’m going to have to accept that while there are many new medications for RA, they aren’t necessarily magic potions. They’re just chances for relief, and temporary ones at that.

At this moment, the only bright side I can see is that I’m not dead yet. But I’m still an optimistic pessimist. Given a little more time to mull the situation over, I’m sure I’ll come up with something better.

Mom’s A/C has been fixed. A handsome young repairman showed up at 9:30 a.m. with a big smile, looked the kaput unit over and discovered that whoever installed it, new, last summer had neglected to do so correctly. They’d left some “plugs” in place despite stickered warnings all over the innards of the A/C unit not to do so. As a result, water had built up inside instead of draining away, and according to the repairman, “you’re lucky the whole thing didn’t short out and burn up.”

Indeed.

He removed the plugs, drained the water, and restarted our air conditioner. It’s 74 degrees Fahrenheit in here again. The young cats went back to chasing each other up and down the stairs; PIB watched from his perch on the arm of the recliner. Mom put her long-sleeved shirt back on and cuddled into the wooly throw on the sofa. I wished for 68 degrees but told myself to be content. 74 is so much cooler than 91. I’m counting my blessings.

In other news, my RA and bursitis are both doing their best to make me dispirited and grumpy. The RA is keeping my hands (and random other joints) stiff, swollen and sore. The bursitis pain is constant, making me gimp around, muttering under my breath and suppressing groans as I walk. Even if it hadn’t been so bloody hot the last several nights, the pain from both conditions would have kept me rolling and tossing instead of sleeping.

There is hope, though. I see my rheumatologist tomorrow morning. I’m curious to know how my most recent blood tests came out, because I can feel a lot of inflammation all over my body. Will my sed rate be elevated, or will it be “normal,” making me feel like an idiot? I’m hoping that Dr. McA will have a couple of minor miracles up his white-coated sleeves. And if miracles are not forthcoming, perhaps he’ll at least trot out some different meds. I’m not sure that there are more DMARDs out there I haven’t already tried, but I know there are several biologics.

Frightening, really.

I’m also going to ask about taking another prednisolone taper for the bursitis. Taking the stuff scares me, but it did help when I took it a few months ago, at least temporarily. I wonder, too, if the same drug in a different dosage schedule (the last one I took tapered for seven days) might relieve both the bursitis and the RA pain? Do I have a moon-face, a buffalo hump and weight gain (sigh) in my future?

We’ll see.

Mom and I get along pretty well, with one exception: she’s always cold—even now, in the dog days of summer—and I’m always too warm. Her townhouse has central air conditioning. Given her druthers, she’d keep the indoor temperature about 85 all the time. That’s waaay too warm for me. Given my druthers (and an unlimited income so I could afford the staggering electric bills), I’d keep the temperature at 68 degrees year ‘round. But that’s waaay too cold for Mom.

So, being mostly reasonable grown-ups, we compromise. The thermostat is kept at 75 degrees in the summer. That’s still too cold for Mom’s comfort, so she wears a cardigan and snuggles on the sofa under a wooly throw. Likewise, 75 is still too uncomfortably warm for me, so I keep the Japanese paper fan I found at World Market handy, dress as lightly as I decently can and enjoy frequent popsicles.

And that’s how it’s been since summer began—at least, until Tuesday this week when the A/C suddenly died. The soonest we were able to get a repairperson to come out and fix it was/is Friday.

Late Wednesday afternoon, the temperature inside Mom’s townhouse hit 86 degrees downstairs (and upstairs? Where the bedrooms are? Let’s not even go there). Today (Thursday), when I came home at 6:45 after working in my aunt’s (blessedly air-conditioned) house all day, it was 91. Inside. Downstairs. The peak temperature outdoors today was 96.

Now, before you accuse me of elder abuse, as in “How could you leave your frail, elderly mother home alone in an un-air-conditioned house to bake like that?!” please rest assured that Mom was as happy as she could be. I found her in the kitchen wearing short sleeves for the first time all summer. She was barefooted, making a salad for our dinner, vigorously chopping carrots and radishes, slicing tomatoes and tossing lettuce. She absolutely beamed. And while she expressed concern about my discomfort (I’m sweating, red-faced, and flapping my paper fan while gulping down ice water), in her heart of hearts she’s hoping that the A/C repairperson calls in sick/has engine trouble/has to send to Shanghai for a new part for our air conditioner tomorrow. I know this as someone who’s watched her mother wrap up in an electric blanket turned on “high” in the daytime in July.

As I write this, three minutes before midnight, with all the windows open and every fan in the place turned up as high as they’ll go, the temperature in here has dropped a whole five degrees. I’ve sucked down three glasses of ice water, slurped two popsicles, and have gone through six paper towels used to wipe the sweat off my neck, temples and upper lip. PIB, my sweet old cat, has abandoned his usual spot curled up next to me for a cooling sprawl on the tile floor of the kitchen. The other two cats have spent most of the evening sitting on the windowsills, pressed against the screens for the slightly cooler air.

I write all of this with a smile on my face because, honestly, I just have to laugh at myself. I can’t be mad at Mom. First, the broken A/C isn’t her fault, even if she did pray for it every day this summer. Second, she can’t help being who she is, and I love her for it. She’s small and slender and has been cold-blooded for as long as I can remember. My sister, who’s four years younger than I am, is the same way. I, on the other hand, inherited my warm-bloodedness from my late father. He and Mom rarely bickered, but when they did, it was usually over the thermostat.  And finally, while I inherited Mom’s fair skin and blonde hair, and we’re both female Scorpios, that’s where our similarities stop. We’re total opposites. Mom’s tidy. I’m messy. Her median speed is 60 mph; mine is more like 15. She’s a Republican. I’m a Democrat. Her clothes always match. Mine frequently don’t. She decorates her home in muted, neutral colors and pristine, tasteful surfaces; my house is a joyous riot of primary colors and what she sees as messy clutter and I see as beautiful variety. When she gets mad, she lets you know. When I get mad, I simmer and keep quiet. I don’t spout off unless I’m furious and absolutely at the end of my rope.

My sister is much more like my mother and, not surprisingly, has always been much closer to her emotionally than I have. But in an ironic twist of fate, I’m the one who ended up living closer and, when she finally needed me, the one who was able to help. That makes me smile, too, because if Mom hadn’t suddenly been struck down by sciatica last fall, we’d never have gotten to know each other again. We’d never have had this opportunity to become closer in spite of our differences. I’m glad that we have. It’s been a wonderful and unexpected gift.

But I sure will be glad when the air conditioner is fixed.

Change is coming.

There are signs. It was dawn when I woke this morning at my usual time, but the sun hadn’t quite topped the crown of the Sierras and my room was still dim, bathed in velvet twilight. Yesterday, as I drove home from an outing to the grocery store, I noticed that the deciduous trees were starting to get that look they get at the tail-end of summer, though it seems a bit early. They look sort of tired, sort of stretched, like a strumpet sneaking back to her own hotel room after a long night of debauche, stiletto heels hanging by their straps from her fingers.

Change. The first autumn leaves are showing on the occasional Chinese pistache. Nothing showy, yet, though those trees are the showboats of the region, originally planted by misplaced, nostalgic easterners desperate for fall color. The change is only a wee dab of rust amidst the vivid green just now, but it’s a certain harbinger of the future. Other signs: Some of the local oaks are dropping acorns; some of the Ponderosa pines already have a scatter of blousy cones at their feet.

And like ol’ Uncle Festus, I can feel the change in my bones. I creak mightily upon rising in the morning. I stump  carefully down the stairs, gripping the handrail tightly, wary of my persnickety hips. The joints feel loose and achy. My hands growl ominously, twinging with glass between the joints as I fill the coffee jug with cold water and spoon fragrant coffee grounds into the filter.

Change. My cousin turns 36 today. He and his wife and two little boys, one four years old, the other nine months, will be at my aunt and uncle’s house this afternoon to celebrate. I’m making his birthday cake, a spice-and-poppy-seed concoction with raspberries and mascarpone frosting between the layers. It’s ironic: In my younger years, I never baked, period. This refusal was a source of twisted pride; my mother and my aunt (the same one we’ll be seeing later and who I help during the week) defiantly thwarted female family tradition by refusing to bake pies, cakes and cookies during the holidays. They figured cooking turkeys and the trimmings were quite enough, thankyouverymuch. My sister and I joined the cause with glee.

But after I reached the half-century mark myself, I discovered that baking from scratch can be fun, a sort of hobby and creative, edible art. To my surprise, I liked it. I started with simple bundt cakes and progressed to peach pies. I don’t bake very often—only for holidays and special birthdays—but my Mom, aunt and sister regard me with disgruntled bemusement nonetheless. I feel like a rebel.

I’ve sat here writing and sipping hot coffee, a cat warming each hip, for long enough. It’s time to move. The sun’s well up. I’ve a cake to create and a party to attend, rheuma and bursitis be damned.

Change is coming.

Note: Image and poppy seed cake recipe are from the fabulous cooking blog “Not Without Salt.” If you like to cook, take a look.

You know how it is. Life is smoothing out a little. You’re feeling rather comfortable and maybe even a bit self-satisfied. Everything is looking up and under control … and then it’s not any of those things and you wonder if it ever was as you flounder around, trying to right the world again.

That’s me at the moment.

Let me just say, though, that at the moment, Mom is doing really well. She’s bright and upbeat. Her appetite is up, which means she’s eating a normal, nutritious diet in small helpings. (Honestly, I wish I could make myself eat the tiny portions of food she does. I’d not be Battling the Bulge all the time.) Her stomach has bothered her only intermittently since her hospital stay, and then only very mildly. Her energy level is pretty much what you’d expect for 79-going-on-80. She’s been seeing a chiropractor for her sciatica pain, and halleluiah, whatever he’s doing appears to be helping.

The only things that have happened during the last week that concern me are her memory issues and, now and then, a sudden exhaustion that comes over her from nowhere. She uses me as her back-up memory, which works pretty well, although I find it a bit ironic, as I’m not the safest bet. I’ve been the forgetful sort my entire life, you see. As an adult I’ve learned to compensate fairly well for what I think may be long-term ADD, but now I’m compensating for both of us. Oh, well. At least I’m experienced.

The memory issues and the exhaustion, I think, may be directly related to her intermittent slow heart rate. Mom’s been a go-go-go, why-do-it-later-if-you-can-do-it-now type her entire life. She berates herself in disgust when she gets tired—especially when she can’t find any good reason for it. As a result, she pushes herself hard and keeps flitting about.  Fortunately, I’m pretty much always nearby these days, so I encourage (read compel) her to take the occasional extended sofa-break.

Yes, boss.

But back to that first point, the one about just when things are going well, they go haywire. Mom’s chugging right along, but I’ve been pretty much stopped in my tracks since Saturday. That morning, my left shoulder and neck started hurting a little. At first, I shrugged it off (literally), thinking I must have strained a muscle in there somehow. I’d stripped the queen-sized bed for linen-washing, after all. Such a chore sounds non-strenuous, but maybe … Well, by mid-afternoon the little pain had grown into a big one, and I knew it had nothing to do with overzealousness regarding sheets and pillowcases. It was a rheuma flare. A nasty one. And as of right now it’s still with me.

It has stepped back a little, which makes me hopeful that it will simply go before too much longer. I haven’t been able to use my left arm much since the flare ramped up, so mostly I’ve been sitting quietly with either an ice pack or the heating pad pressed against the triangle that forms the top of my shoulder, my collarbone and my neck. I’m not really sure which joint is involved, as this flare is different than the other, more familiar flares I’ve had in that shoulder. There are two spots where the collarbone connects to both the shoulder and the sternum via ligaments, so perhaps the rheuma is attacking one or both. At any rate, the sudden, harsh pain and resulting disability really clipped my wings and, yes, sort of bummed me out.

This new flare makes me think that my rheumatologist and I need to reassess the usefulness of the three DMARDs I’m taking right now. Perhaps one (or all) of them are losing their effectiveness—as they do when it comes to autoimmune diseases. I’ve got an appointment with him on the 20^th of this month, but I’m going to try to get in to see him sooner. This sort of flare, which is far worse than any I’ve had for quite a long time, is scary and portends nothing but bad news.

Along with the shoulder, my hands have been twinging madly and today, the bursitis in my hips is causing increased discomfort. Honestly, staying optimistic does get hard at times like this. I’m keeping at it, though. Our three cats—my oldster PIB, Mom’s sleek, black 18-month-old Kitty-Kitty and the newest member of the family, the kitten Emma—keep us laughing as they play, racing around the house, rolling around wrestling and, in PIB’s case, snoring with admirable determination. It’s been nice and warm but not horribly hot even this month, which is generally one of the hottest in California. And while I’ve had to set aside cooking, etc. for my aunt and uncle for the time being because of Mom’s illness, I’m looking forward to getting back to that this week (as long as she keeps feeling well). I really enjoy them and the work.

There are a few good things I’ve found about this new, debilitating flare. One is that it has forced me to appreciate more the milder RA I’ve had until now. Another is re-learning how to distract my mind from the pain. There was a time when I was really good at it, but I’ve gotten a bit rusty. And the last good thing that has been reiterated for me is that I can still smile and laugh and act with kindness toward myself and others, even when I hurt. It’s a good lesson, I think, and it makes me a better person.

Here’s wishing all of you a gentle, painless week, full of joy and satisfaction. Thanks for dropping in.

Mom is home, discharged yesterday afternoon from the hospital with instructions to see her GP by the end of this week and her new cardiologist next week.

While no cause for the nausea or the slow heartbeat has so far been found (except for advancing age), she’s feeling a hundred percent better: the miserable sick stomach is gone. The slow pulse? Well, since she’s not wearing a heart monitor, I don’t know. I’m guessing it’s not; that it continues to drop into the basement periodically and then climb back up. Mom has a treadmill stress test coming up soon because of that scary pattern. Maybe it will uncover some clues. In the meantime, it seems that the whispers about an impending pacemaker were just that: whispers. We’ll wait and see.

So, she’s feeling good, if a bit weak from three full days and nights down, half of the time spent without nutrition and water (she wouldn’t take either). They rehydrated her intravenously at the hospital. Here at home again, she ate well today, and she’s reluctantly promised me she won’t climb or descend the stairs without telling me so I can be on hand. Just in case. Naturally, she thinks I’m being annoyingly overcautious. “I’m just fine, you know!” I smile and reiterate how much easier it’ll be for her to go along with me than it will to recover from a broken hip—or neck—should she become suddenly dizzy and take a header down the stairs.

It’s odd, this subtle flip-flop of the parent-child relationship.  Neither of us is comfortable with it, yet there it is. I find myself taking huge pains to be respectful, couching my words in gentleness and lacing them with humor. When she responds with a sarcastic “Yes, Boss,” I bite my lip and take a deep breath, trying not to let it hurt, to let it go, to remember how hard it is for her to relinquish tight control over her life. After all, it would (and perhaps will, one day) be equally hard for me.

And I know that often, she’s honestly puzzled by my concern. She was talking on the phone to her brother in Washington, DC today, and told him that I made her go to the hospital because of her sick stomach, and they made her stay. Then her stomach got better so they let her go—and she wasn’t sure why a stay in the hospital had been necessary in the first place. After all, she’d had a tricky tummy all her life…

I couldn’t help but overhear this astonishing conversation, so I said, “Mom, they admitted you because your heart was beating too slow, not because your stomach was sick.”

“Oh,  yes!” she laughed. “My heart! That’s right…” and she told him a truncated version of the Rest of the Story.

Did I say OMG?

I didn’t have much discomfort during the day today, and no outright pain from either the RA or the bursitis. It was rather nice. Tonight, though, the RA dragon is gnawing playfully at my fingers, thumbs, and my great toe on my right foot. He’s not biting down hard. Instead, he’s just giving me a prolonged sample of what he’s capable of should I get too complacent. I wish there was a way to tell him that I’m not.  In fact, I’m too often just the opposite of complacent—I’m anxious.

In a too-calm way, though. I try hard not to worry, to keep myself upbeat and positive. I try not to think too much about my rheuma and the insidious damage it’s doing in my body. But I’m not complacent.

Enough. It’s time to call it a day. Thanks for dropping by.

You’ve heard it: “May you live in interesting times.” Well, it’s been a little interesting around here the last few days.

This last Saturday morning my mom started feeling nauseous; by Sunday afternoon, she was so ill she could barely move. She’d gone at least 48 hours without eating more than an Ensure milkshake I’d made her. When she told my aunt where to find her good jewelry so “the girls (my sister and me) won’t have to look for them” we figured it was time to get her to a doctor. She was too sick to get down the stairs safely, and the thought of sitting up in the car for a 25-minute ride almost made her cry. So I called an ambulance.

At the hospital they gave her something for the nausea. It helped a little bit. But the surprise was that they discovered that her heart was beating slowly, and occasionally very slowly. Way too slowly. They admitted her.

During the night the nurses woke her again and again, each time her heartbeat dropped below 40 beats per minute. Each time it rose again into the high 40s and stayed. When this happens, Mom doesn’t feel it. She doesn’t get dizzy or faint. She feels no pressure on her chest. What she does feel is a continuous nausea that so far, the valiant medical team hasn’t been able to relieve her of. There is conjecture that it’s related to the slow heartbeatby way of that rascally vagus nerve.

There’s a chance they’ll send her home today. (OMG) There’s an equally good chance they’ll keep her for another day and night, too, since these Very-Low-Heartbeat (VLH) sessions even frighten the nurses and have the cardiologist and hospitalist furrowing their brows. And there’s talk of a possible pacemaker in her near future. There’s a part of me that hopes they’ll just do that, and soon. Like, today.

Why? It seems to me that a VLH could cause many of the problems Mom’s been experiencing during the last 10 months. Symptoms like forgetfulness, vagueness and confusion. Symptoms like fatigue. Symptoms like a bird-like appetite and a craving for sugary foods. (she’s tiny and slender as a bird, too). She’s never had these problems before and she hates them. It scares her when she forgets things, and it makes her angry sometimes when I correct her memory, even as gently as I do it. It frustrates her to run out of steam within an hour when we’re out doing things she enjoys.

Might having a strong, steady, normally paced heartbeat alleviate those symptoms? Maybe. Fingers are crossed.

As for me: Still have the boring, achey, stiff-making bursitis. RA has been twingy but the dragon is generally behaving himself. I got a decent night’s sleep last night in spite of both and in spite of the general worry over Mom, I’m feeling okay this morning. I’m headed for the hospital in a little while to find out what the plans are for Mom, but I won’t be staying there for more than a couple of hours unless they’re sending her home (OMG).

Interesting times. Send some good vibes our way? My love and care to you all.

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.