Jumpstarting the muse

As you’ve probably noticed (!) I’ve changed RheumaBlog’s theme again. While I’m aware that it’s better to pick a “look” and leave it alone–the idea is to create a presence that’s consistent, one that your readers can trust–I keep getting bored with the “look” I’ve chosen. Sorry, readers.

Here’s the thing: While the last theme was attractive, the Swiss-dot pattern in the background looked increasingly cutesy to me. It didn’t correspond with my present, more serious mood, and I found myself not wanting to visit my own blog. Uh-oh. That’s bad enough on it’s own, but when you’re working against a bad case of writer’s block, too, it has the makings of a catastrophe.

Okay, that was a bit dramatic. But it fits, too, since “catastrophe” is how I think of  my “not writing” state. So, as I do occasionally with the furniture in my living room, I changed RheumaBlog’s look. At home, that mostly means moving things around, since actually buying different furniture is expensive and, since what I have is perfectly useable and attractive, it’s practical. Switching the room around (and cleaning it while I’m at it) makes it look fresh and new to me. It calms my itch for change and soothes my old case of wanderlust.

So, I like RheumaBlog’s new design. I feel like I’m in a familiar but more interesting setting. One nice thing about this theme is the option for changing the header. I ran across this Wassily Kandinsky piece, painted in 1915, of St. George and the Dragon a few weeks ago and decided it would work nicely as Rheumablog’s header. I’ve liked Kandinsky’s art for many years; this one, though, is special. Almost from the beginning, I’ve thought of the rheumatoid arthritis that attacks my joints as a snapping, biting, gnawing dragon and of myself as a reluctant knight, frequently battling the dragon for my health. For my life, even. And while I haven’t won yet, I’ve managed to fight my enemy to a draw many, many times.

I also like the colors the artist chose: bright primaries that nearly vibrate with life and movement. And I love the style: modern, impressionistic, almost cartoonish but full of a subtle seriousness. St. George battled and slew a dragon. Don’t we all, in one way or another? Isn’t that life itself?

Tonight I find myself once again under siege, my hands swollen and achy and my hips stiff and mean-sore. Neither keeps me from doing what I need to, but both discourage doing more than really necessary. So I’ll treat myself gently for what’s left of the day, try to sleep well, and start again tomorrow with renewed courage.

I’m not going to let that old dragon win.

Steroids + kittens = smiles

Today was my last day on a six-day prednisolone taper. I wasn’t expecting much from it–the last time it was prescribed, it took two tapers, weeks apart, to work on the bursitis pain in my hips. When the pain finally eased (it didn’t completely go away), the relief lasted about four weeks before ramping up again.

So you can imagine how pleased I was to get out of bed this morning with only a little pain in my hips and hardly any stiffness. At the same time, the rheumatoid arthritis pain and stiffness in my hands and wrists, which was just as ugly last night, was also much better this morning.

I spent the day down in the valley with my aunt and uncle. After making breakfast for him–a cheese-and-veggie-stuffed omelet, toast and fresh fruit–I made up a long list and did their grocery shopping. It went great until the last fifteen minutes or so, when that low, vague ache and feeling of weird looseness in each hip joint started. I finished up the shopping and headed back to the house, carried everything in and put it away, and then, finally, rested for a while. I was proud of myself, gang.

It was a gift, being nearly pain-free, even if it was only for half a day. And it gave me a nice dose of hope, too. With luck, this mean bursitis pain will take a powder for several weeks again. With really good luck, maybe it will go away completely.

Tiny kitten BoBo has a little lunch via eye dropper from my aunt. Look at those amazing little claws!

Feeling better allowed me to enjoy the abandoned, four-week-old kitten my aunt is caring for. The mama cat is feral and left it on my aunt’s front porch.  My mother adopted one of the kittens from mama cat’s last litter, and now Emma is about four-and-a-half months old. My aunt plans to foster wee BoBo until he’s old enough to be adopted out by one of our local animal rescue organizations.

I spent the afternoon making dinner for aunt and uncle, taking breaks now and then to rest a little and, yes, help her feed BoBo with an eye dropper. On my way home this evening I picked up a miniature bottle with a rubber nipple at a pet store; I’m planning to take it over to my aunt’s tomorrow. It should work a lot better than an eye dropper for a kitten that’s still so small it needs to suck.

I’m achy tonight. The rheuma is back in my hands and wrists, and my hips hurt. But my mood is 1,000 percent brighter. What a big difference a small break from pain–and a tiny black kitten–can make.

Getting ready for battle

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.

 

 

 

Looking for the silver lining

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.

 

All cooled down

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.

Hot and cold

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.

Don’t look now, but …

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.