The Whirlwinds of May

Once again, it’s been forever (OK, it just seems like forever) since I’ve checked in here at RheumaBlog. My excuse? The month of May has been a little … busy.

Mom put her condo on the market last July (hard to believe it was that long ago! We’ve been living in “show” mode ever since) and, after many mini-flurries, then major flurries, then no flurries at all of interest, it finally sold. Just last week. There have been new and overwhelming flurries of real estate phone calls, questions, and paperwork ever since.

And then there was the usual monthly line-up: doctor appointments and lab tests and follow-up appointments with Mom’s primary care doc, her cardiologist, her gastroenterologist, and her urologist. The results so far? Mom’s age is taking its normal toll on her body and her heart, which is slowly, naturally wearing down. Smoking for 40 years and breathing for 82 have also weakened her lungs, but not nearly like you’d expect. She has a twitchy, unhappy tummy (nothing new). She’s prone to infections in her waterworks, like most elders.  But overall, “you’re doing great compared with most people your age I see.” This was the verdict given  Mom  recently by her nurse practitioner, a smart, super-competent, smiling, middle-aged woman Mom likes far more than her tiny, blonde, teen-aged primary care doctor, who still has (I swear!) baby fat and braces on her teeth.

Also, this month we took Kitty-Kitty to the vet for her rabies vaccine and some matted fur issues and discovered some amazing things about her innards (more on that another time). I spent a week away, caring for my

"Mrs. Beasley," the doll that 6-year-old Buffy carried everywhere on the 70s sitcom "Family Affair."
“Mrs. Beasley,” the doll that 6-year-old Buffy carried everywhere on the 70s sitcom “Family Affair.”

disabled uncle while my aunt visited a friend in Washington state. I had the straight hair on the front and sides of my head permed to match the rheuma-med-side-effect curly hair on the back of my head. Now all my hair is curly. I look a bit like Mrs. Beasley (even the glasses) but I like it.

As all this was happening, I continued to enjoy a steady trickle of free-lance work. It filled up the time I had left over from daily house re-cleaning and neatening for possible showing, Mom-caring-for, and the contemplation of and preparation for putting colored pencils to paper in an effort to scratch my inner “you must make art!” itch. More on that another time, too.

Then, last week, my uncle from Washington, D.C. arrived for a five-day whirlwind visit (he’s a whirlwind of the first order, just like my mom was before advancing age finally forced her to be satisfied with intermittent but furious gusts). Three days later, my sister from New Mexico (another, little-er whirlwind) arrived for a seven-day visit. Thus began casino jaunts, trips out for restaurant meals, a dinner party, and shopping trips. After uncle left, we had a much-needed, full day of rest.

And then we started looking at apartments to move into down in Sacramento. My sister flew back to Santa Fe yesterday.

Today, for the first time this week I have some time to work on a couple of new free-lance articles. The deadline is EOB tomorrow. Mom wants to go see some more apartments and start the exhausting process of getting-rid-of in earnest, as moving her into an apartment will mean some seriously major downsizing. But I can’t help her until my own work is done—I need to have some income. We’ll have to arrange some sort of schedule so that both of us are able to meet our responsibilities.

Finally, there’s my old rheuma-dragon. Since I posted last time with my good news, he’s become even more active. He gnaws, hard, almost ceaselessly on my hands, and he’s starting in on my feet. Yesterday he chewed on my right shoulder for most of the day. None of this is serious pain. I’d classify it as a 5-6 on the ubiquitous pain scale, but it’s bothersome. I fear it doesn’t bode well.

Along with the nagging pain, I’ve had many more of those RA fatigue and brain-fog days. They’re new symptoms for me. Please excuse me, but I really frigging hate both. Unlike my relatives, I’m not and have never been a high-energy whirlwind. My usual pace is relaxed and sauntering. But it’s always worked just fine for me (and driven my mom and sister nuts. Tough s—t, as they say). This fatigue, though, is killer. It slows me way past my usual no-hurry pace, though so far I think I’ve been able to cover it. And I know: the secret to coping with it is pacing myself. But I’m a newbie. I’ve never had to consciously pace myself because I already did, naturally. I’ll learn, I expect.

I just wonder how I pace myself when I must help mom prepare to move within the next six weeks, keep up my freelance work, and do all the other, daily chores, etc. that make up each and every day. My sister will return around the actual moving date to help, thank the gods, but in the meantime gang, I’m on my own.

And I’m worried. It was encouraging, last time I saw my rheumy, to see an improvement in my RA blood tests as a result of his fiddling with my meds, but as usual, the lab test results don’t seem to actually reflect my reality. Too bad.

Well, enough carping. Like Mom, overall I’m doing pretty well. I’ll just keep that uppermost in my mind as we move into the chaos that June promises to bring.

Ancestor dreams

This is an old post (2008!) from my old blog, Blue Wren, but the dreams haven’t changed. If anything, they’ve grown more insistent …

Blue Wren

I’m a quarter Finnish. My maternal great-grandparents emigrated from Finland to Saskatchewan, Canada, where they lived surrounded by vast, rustling fields of yellow wheat. My great-grandfather, I’m told, was murdered there, shot dead by another man. The remaining members of the family no longer know his story, so I have no idea why or how it happened. Even great-grandfather’s name is gone.

My great-grandmother remarried after a time, and it was her second, non-Finnish married name I knew her by. She remained in Saskatchewan, outliving her second husband by decades, and went on to live independently well into her 90s. She died only a few years after she was finally forced by great age to live with relatives.

My mother remembers her as a tiny powerhouse, a tyrannical woman who swept into her childhood Idaho home like a scolding whirlwind. She didn’t come to coo over or cuddle her young…

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Wren thwarts the needle–for now

Happy Sunday, everyone!

I need to pass along a couple of interesting items. The first is an overview posted on Healthline.com of a Consumer Reports evaluation of treatments and medications—specifically, biologic DMARDs—for rheumatoid disease. It’s a valuable piece of info, as it offers a better understanding of how biologics are used to treat RA. Check it out here. [Full disclosure: I write for Healthline.com]

Second: I received an email this morning from a PhD student at RMIT University, in Australia. She’s conducting a survey about therapeutic gloves, hoping to one day develop new, better gloves that will be more, well, therapeutic. The questions in the survey won’t ask any personal information—no name, no other identifying data. Instead, they’ll ask about your perception of the gloves you use now (if you use them at all); the durability of the gloves; and what you’d like to see in a new product.

I don’t know about you, but I’d love to have a pair of gloves that could really help soothe and relieve my achy hands. You can learn more about the survey, and take it if you like, here.

And now, for happenings in Wren’s world: Good news! The increase in my Plaquenil dosage and the addition of the NSAID etodolac to my daily cocktail of RA drugs worked! Last time I saw my rheumatologist, my labs showed a greatly increased sedimentation rate and an alarmingly elevated CRP, both indications of increased inflammation in the body—and a warning that my RA was starting a run out of control. In response, the doc made the above changes to my meds. I hoped it would work, but frankly, I was worried. RA is notorious for forcing the body’s immune system to find ways to neutralize any medications that mightDMARD options make the disease (I know it personally as my rheuma-dragon) sleepy and sluggish. It’s the main reason that so many of us who have this disease end up running through so many different drugs.

But this time, my labs dropped back down to within normal ranges. That minor change did the job. I’m very relieved. Last time I saw my rheumy, we briefly discussed starting me on Humira if the change didn’t work. He suggested I study up on the biologic DMARD, and we’d discuss it more at the next (this) appointment if necessary.

I’m glad we didn’t need to. I’m not afraid of the biologics, and I’m not needle-phobic (it’s hard to be needle-phobic when you have RA. We get jabbed so often!). I don’t really want to inject myself, but I can do it if it’s the difference between controlled disease with minimum-to-moderate pain and low disability vs. the opposite.

But the biologics bring with them some significant side effects. They don’t happen to everyone, of course—we couldn’t use the drugs if they did—but they do require sober thought. “They’re almost miracle-drugs,” my rheumatologist said. “But they’re serious drugs, too. I don’t prescribe them lightly.”

So, for the time being, at least, I’ll stick to the meds I’m taking. I wish they’d work better to relieve the constant swelling and ache in my knuckles and fingers, but I have a feeling they’re already doing the best they can, and I’m more grateful than I can express. I’ve already experienced life without them. I don’t want to go there, ever, ever again.

In the meantime, I’ve developed a fair number of coping skills for those days when my hands start feeling like someone stepped on them–and then did it again for good measure. I carry my therapeutic gloves—Isotoner compression gloves, if anyone’s interested—and I have a pair of thick, lavender-scented, moist heat, microwaveable mittens and a paraffin bath kept constantly warm for random acts of dipping. Ice packs are temporarily soothing when the hip bursitis strikes. I also know the therapy exercises that work best to calm things down again.

These, and other methods, like meditation, the art of purposeful distraction*, and mindfulness are all part of the arsenal everyone who has this disease needs. Oh—and laughter. That may well be the best medicine of all.

*You’re hurting. So, once you’ve gotten sick of sitting around muttering and feeling pitiful (and we all do it now and then, no matter how tough we are), you purposefully find a good movie or a book or some project to lose yourself in, distracting yourself from the pain for a while. Or maybe you go outside for a random walk, or to wander your garden. Or maybe you use shopping therapy. It’s all good and all healthy. Distraction works! It’s how our minds are made.