RheumaBlog

Same dragon, different day.

heartfeltOver the years I’ve had countless people, from dear friends to complete strangers, offer me heartfelt advice about how to treat my rheumatoid disease. I can’t remember ever asking for it–the “helpful” words just spill from their lips, unsolicited.

I decided to look into what motivates people–family members, friends, complete and utter strangers–to do this. Read more at RheumatoidArthritis.net.

Categories: RA

creakytinman-ranet-huHere’s how my mornings begin: I move suddenly from restless sleep to restless wakefulness. Instead of being warm and comfortable, wishing I didn’t have to get out of my soft cocoon, I’m warm and uncomfortable, and I want to get up because maybe I’ll feel better than I do right now in bed.

For a minute or so, though, I take stock of what hurts: my knuckles and wrists; both ankles, seemingly every joint, tendon, and ligament in both feet; and at least one hip.

Whadda party!

…and so it goes. You can read the rest right here.

Categories: RA

paintastic20150813_175241

Illustration copyright Leslie Vandever

This is hard.

You’ve started a new biologic. A “miracle drug,” as it’s sometimes referred to. It’s been about six weeks since you started it—not long enough for most biologics to show their effects, beneficial or otherwise, but in some patients, this one has “worked” this early.

For you, not so much. In fact, at this moment, you’re in real pain.

… Please read the rest here: https://rheumatoidarthritis.net/living/ra-and-the-omgs/

Categories: RA

Self-care?

If you’re like me, the words force a sardonic little snort. I mean, who has time for that?

For me, the non-holiday months are already chock-full of responsibilities to (and for) others. For example, I take care of my elderly mom full-time and write freelance articles for a living. There’s also the usual, day-to-day stuff like cooking and housework like wiping up the kitchen, swishing out toilets, daily trash recycled or dumpsterized, the cat’s litter box scooped—the chores are never-ending, right? You say I should practice self-care? When?

On top of all those responsibilities, now add the holidays.

I’m inching along in holiday traffic just to get to the packed-to-the-doors grocery stores. Then there’s shopping for presents, putting up and decorating the tree, and preparing for holiday parties, meals, travel, etc. Self-care? Hah!

I do all of this while trying my darnest to be kind, caring, and pleasant to the many grim-faced, sometimes grouchy and frequently rude fellow human beings I encounter along the way. Because that’s how I’m made. I’m a glutton for punishment, but I’m a die-hard optimist, too. You know: pay it forward. That’s self-care, isn’t it? That little inner glow you get when you’ve made the Grinch smile?

Jeez, I’m little Suzie Who!

Oh, and did I mention that I’m doing all this while enduring grindingly painful joints and sometimes soul-killing fatigue, both caused by my rheumatoid arthritis (RA)? I bet you know all about it! We’re RA soulmates, right?

Self-care? You’ve got to be kidding me!

merrychristmas2Whoa there, Wren! Take a nice, deep breath (thanks, Rhonda Waters!). Step—slowly!—back from the edge of the abyss. Yes, there is such a thing as Santa Claus—I mean, self-care. And yes, it’s vital for survival. It really is. If we don’t care for ourselves, we’ll be less able to do all those things we have to do for ourselves and others, let alone the things we want to do. We’ll pay the price of ignoring self-care with plenty of general unhappiness.

When life gets even busier, fuller, more chaotic and way more stressful—particularly during the holiday season–I tell myself that I just don’t have time for self-care. But if I’m honest, I know that’s not true.

Self-care is easy. It doesn’t need to be elaborate. I might like the idea of a lengthy soak in a nice, warm bubble bath, complete with soft music, flickering candles, and a lovely glass of wine, but I can’t really do it. My reality is a three-minute morning shower. What I can do, instead, is add a single, extra minute to just stand there beneath the spray, breathing deep, eyes closed while simply allowing the hot water to flow over my head and down my body. It’s a full 60 seconds of luxuriousness taken just for me; a minute of being as my tight muscles loosen, my stiff joints warm, and all that lovely steam clears my danged sinuses.

Is that self-care? Yes.

So maybe I don’t have the time (or the bucks) for a nice manicure. But what I can do, instead, is take a minute or three, fill a basin full of hot water, and just soak my hands. They’re usually tender and achy, and the hot water feels heavenly on those creaky, aggravated joints. Then, I’ll soap my hands and give them a gentle, slippery massage. I close my eyes. I breathe. I try to stay right there, in the moment, thinking only about how good it feels to have such warm, cared-for hands. After I rinse and dry them off, I smooth on lavender-scented lotion, continuing the massage until it’s absorbed into my skin. Then, I get on with my day.

Is that self-care? Mmmhmm.

And sometimes, self-care is as simple as taking care of something you’ve been putting off doing for a while. I’m a chronic procrastinator. Have been all my life. I set things aside for “later” even though I know that doing so is not only going to make more physical work for me later, but it’ll also stress me out mentally and emotionally. And the longer it stays “out of sight, out of mind,” the worse that stress gets. I know this. I do it anyway. So, for me, self-care is taking care of a procrastinated task. Whatever it is, I just dig in and do it. The relief when it’s done and gone is sublime.

Is that self-care? Absolutely.

Self-care can also be a 15-minute catnap, taken in the middle of a busy day. It can be taking the time to use a paraffin bath for painful hands, or for wrapping a flared ankle in an ice-pack. Self-care is singing “row, row, row your boat” under your breath in time with your steps as you walk to distract yourself from your painful knees. It’s learning and practicing simple mindfulness techniques (like singing “row, row, row your boat” when you walk).

Additional self-care practices can include talking to your primary care provider or rheumatologist about your RA, and asking for help with medications or ideas about how to cope with flares during ongoing treatment; seeing a pain management specialist or a podiatrist or an acupuncturist; or doing gentle exercise when you don’t feel like it, and eating nutritious and healthy foods instead of junk. Self-care is a conscious choice.

A large part of self-care also includes education. Make sure you know all you can about your rheumatoid arthritis: what it is, how it’s treated, and about the medications and alternative treatment options available. A terrific way to learn more about RA, how it’s treated, how others cope with it, and to learn about other tools and resources is by visiting the Joint Decisions Facebook page and JointDecisions.com.

Above all, self-care is about staying positive! That’s not to say you can’t have the occasional pity-party—I sure do. But personally, I feel better (even when my RA is tossing its worst at me) when I see my glass as half-full. I’m mentally and emotionally better balanced when I take the time to notice the many unique and truly exquisite gifts the world offers to us each and every day, like sunsets and a child’s uncomplicated smile. When I take the time—even just a few minutes—to take care of me, just me, I’m doing the right thing.

Self-care is for everyone. Happy holidays!

This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.

Categories: RA

kidneys-ranet-hu

Your kidneys—two, bean-shaped, fist-sized organs in the low back—are the body’s workhorses, filtering waste from the blood through urine, regulating electrolytes (and salts) in the body. They may be affected by RA too.

Read more here: https://rheumatoidarthritis.net/living/your-kidneys/

Categories: RA

Reading Without HandsI’ve loved to read since I learned how as a little girl. Reading has always informed and even transformed my days, my nights, and my life. With a book in my hands, I’ve traveled the world. I’ve parachuted from low-flying planes into war zones and wildfires. I’ve tracked down and caught murderers and terrorists. I’ve visited other worlds and other dimensions, ridden on the backs of dragons, and traveled into the most daunting wilderness. And all of it I’ve done without ever leaving my chair …

Read the rest at RheumatoidArthritis.net

Categories: RA

Boxer Puppy in Rear Seat of Car

Sometimes I feel guilty about having rheumatoid disease.

Then I kick myself. “Why are you feeling guilty about this? You didn’t do anything to get RD. You didn’t commit a bunch of terrible “sins” or live a selfish, bad life before the disease started. You weren’t an awful child. You’ve always tried your best to be a good, kind, caring, loving human being! And you’re doing everything you can to treat the disease—medications, lifestyle modifications, etc. You eat your vegetables! Whole-grain everything! Chicken and fish instead of steak! So stop feeling guilty about something you can’t help!

Then I feel guilty for feeling guilty…

Read the rest here.

Categories: RA

Mindfulness

I’m reading a book by the venerable Buddhist monk and sage Thich Nhat Hanh called “Peace Is Every Step.” I discovered it way back in the late 1980s, a year or so after my diagnosis with rheumatoid arthritis, and it started my long—and admittedly stuttering—journey into the practice of everyday mindfulness. I pick it up and read it again every few years. It always re-opens my eyes and my mind.

In “Peace Is Every Step,” Thich teaches, with sweetness and gentle humor, that we can find inner peace in everything we do, from walking to washing dishes. Being mindful doesn’t require actual meditation. We don’t need to sit in the lotus position with our palms up, eyes closed, attempting to levitate. Instead, we can use frequent moments during each day to find our peace, our inner calm, and ourselves.

Mindfulness, of course, is currently getting a lot of attention as a way to manage chronic pain…

Please read the rest at RheumatoidArthritis.net .

Categories: RA

As you’ve probably noticed, most of my writing these days links back to RheumatoidArthritis.net, a fantastic website for those of us who find ourselves in the
“rheumatoid arthritis community” (whether we like it or not…). I love writing for them. Smiling at RAThe website is filled with personal stories about every aspect of having RA and credible, accurate information about the disease, it’s symptoms, and the drugs that treat it. As an artist and graphic designer, I’m enamored of the art and design aspects of the site as well. I feel honored to be one of their RA patient advocates.

Writing for RheumatoidArthritis.net and doing other freelance writing for health-related websites has kept me busy. Along with that, I’ve been indulging myself in creating new artwork on a regular basis, a pastime that gives me real joy. It’s also turned out to beGardener-CC-070116 amazingly therapeutic: when I’m drawing, my mind is far away from the stresses and worries of everyday life. It also works as a form of meditation, helping me cope with my RD symptoms. Even though my RD affects my hands and wrists more than any other joints in my body these days, I can usually at least draw lightly with a pencil. What more can any artist want?

I’ve also taken to Twitter as an RD/chronic pain patient advocate and have been the beneficiary of some incredible cheerleading and encouragement during several Joint Decisions and HealtheVoices conferences. And I’ve been honored to serve on several pharmaceutical patient advisory boards over the last 18 months or so. All of these endeavors puts those of us who live with rheumatoid disease every day first as they advocate for us and search for new and better treatments. One day perhaps they’ll even find a cure!

Finally, as many of you know, I’ve been living with my elderly mom for several years now as her companion and her caregiver. Sometimes the caregiving part takes a great deal of time; other times, hardly any at all. I never really know which to expect when I get out of bed each morning. Nevertheless, I feel blessed that I’m able to spend such truly precious time with my Mom at this stage in both our lives.

All of these things take up a fair amount of my time–which is a lame way to apologize for not posting here as much as I’d like to. It’s also why I was surprised–and honored!–2016_badge_list_v2_badge-rheumatoidarthritis (1)to receive an email from Healthline.com today informing me they’ve chosen Rheumablog as one of their Best Rheumatoid Arthritis Blogs of 2016. Wow! I think this may be the fifth consecutive year for my humble blog!

RheumaBlog is only one of a handful of rheumatoid-arthritis related blogs chosen for this honor. Please click the badge on the upper right in the sidebar and, when you have time, visit them all and offer your congratulations. Each of them is unique, written by truly great, down-to-earth, compassionate and empathetic people who not only live with this crap disease every day but care enough to want to pass on whatever they learn–along with support and encouragement–to others and their caregivers. I’m still just gobsmacked that, given my spotty posting record over the last year or so, RheumaBlog was chosen to be honored with them. Thanks so much, Healthline.com!

JDTwitterChat-072616Finally, I’d like to let you know that Joint Decisions 2016 is sponsoring another of their really popular Twitter chats next week on the 26th. If you’re a tweeter (or whatever it’s called), mark your calendar and join Molly Schreiber of You’re at Jax and Rick Phillips of RA Diabetes to chat about preparing for your appointment with your rheumatologist, primary care provider, or other clinician. These chats are fun and lively, and I always enjoy them. It’s easy: just search #JointDecisions and tweet. I plan to be there (@RheumaBlog_Wren), so be sure to chirp “hi” at me!

Until next time, friends. Be well, stay safe, and don’t forget to look for the gifts life offers us each day.

 

 

 

Categories: RA

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