Reason and Control

I’m an old Yahoo homepage fan. Every morning I open my browser, click on Yahoo, and then click on the Weather Channel box. First, I note the temperature, and then I scroll down to where it shows the moment’s barometric pressure. I’m ever curious as to what it’s doing, even though my joints already know.

If they’re voicing their presence in anything from a growl to a screech, the barometric pressure is on the rise. Checking the official reading is merely a way to acknowledge what I already know. I always feel a sort of aggravated pride barometric-pressure-and-bass-fishing-1when I see the little arrows pointing up. “Ahah!” I think. “Yep, barometer’s rising. That’s the reason.”

I’m not sure exactly why this matters so much to me. Rheumatoid disease (aka rheumatoid arthritis) is so bloody inexplicable, so capriciously random in terms of pain or no pain and its intensity, which joint will be affected (and for how long), and whether other symptoms (swelling, fatigue, malaise) appear, perhaps being able to attach a reason for it gives me a tiny feeling of control.

And that’s important when it comes to chronic illness and pain. These maladies swipe away any control we might have had over our lives. They swipe it from day to day, sometimes even from hour to hour or minute to minute.

I pour myself a cup of coffee. But when I curl my fingers around the cup’s handle and try to lift it, a spear thunks through the small bones of my hand, setting them screaming in sudden pain. I put the cup down hard, slopping hot joe all over the counter, and clutch my stricken hand to my chest. I rock, moaning under my breath, as I wait for (hope for) that awful speared feeling to subside.

My RD just stole a random, routine moment of control from me. The feelings that bubble up along with the pain and sudden disability include shock, bewilderment, despair, frustration, aggravation, anger, and fear.

Carefully, I flex my hand. The pain is so gone it’s hard for me to believe it was even there a few moments ago. With a sigh, I mop up the spilled coffee and—gingerly—lift the cup again. No problem. No pain. Nada. So I get on with things, determined to ignore what just happened. But that tiny, sharp-edged pebble of despairing fear remains wedged in the depths of my mind, influencing everything I do for the next several hours, at least.

I can’t explain why my RD speared my hand. I can’t explain why the pain was so intense, or why it was so brief, or why it went away without a trace. And though I try, I also can’t dislodge that left-behind pebble of fear, the one that’ll make me wary about lifting anything heavier than a pencil for the rest of the day and make me wonder if that transient pain was merely a precursor of much worse pain to come. Because it has been in the past. Many times.

This is how RD steals control. It doesn’t necessarily have to totally disable us or wrack us with continuous, overwhelming pain. All is has to do is niggle now and then, reminding us that we’re not well like most of the people around us. It reminds us in a myriad of variable tiny ways that its part of our moment-to-moment existence, that no matter which powerful drug or combination of drugs we’re taking for it, it’s still incurable. That spear of pain reminds us that although the drugs seem to have been mostly working to slow down or halt the progression of the disease, it may have just found a way to circumvent them. It may have just rendered them useless, setting the stage for months of pain and disability as we try new, different drugs against it.

And it makes us feel like hypochondriacs. Like we’re obsessing over our disease, over our fate. It makes us feel like whiners and gripers, embarrassing us, forcing us to hide our disease—and our pain—as much as we can.

As I sit here writing this post, I’m suddenly aware of my hip joints, those magnificent, amazing ball-and-socket joints that allow me to walk, move, turn over in bed, and even sit and stand. I’m aware of them because they hurt, even though I’m still. The grating ache is mild, maybe a 2 on the 1-to-10 pain scale doctors like to use, but it’s pain nonetheless.

Why does this bother me? Well, because when our joints are healthy and not under attack, we don’t notice them. We don’t suddenly become aware of how smoothly and painlessly they’re working. We don’t note them when we’re sitting. We don’t think, “gosh, my hip-joints feel like, well, nothing. How great!” Forced by my RD to notice my hip-joints, I feel a sudden flush of disheartenment. And fear. And disgust at myself because once again, my mind is on my disease.

I guess it’s no wonder I like to see outside confirmation of my distress, even if it’s just in the form of two little upward-pointing arrows next to a barometer reading on a website. It means that my discomfort isn’t all in my head. It’s an affirmation.

“Ahah,” I think in triumph. “That’s why!” Take that, rheumatoid disease!

Climbing Back Down From the Summit

I’m home from Boston*, back with Mom and our calculating cats.

I want to try to write about the Joint Decisions Summit while the whole incredible experience is still (sort of) fresh in my mind. But first, let me say this: flying from the West Coast to the East Coast of the United States and back—a journey of more than six thousand miles—over the space of a single weekend is not for wimps.

Well, I’m not one, thank goodness. And neither is my sweet new friend and fellow traveler Dina Neils, the Titanium Triathlete. She and I shared some empowering experiences along the way—but more about that later. Just let me say that by the time we landed back on our home coast after midnight last night, we were both spoonless.

But being spoonless is not the end. I know from long experience that somehow, we humans often find spoons in reserve when we’re pushed to our limits. I’m sure you’ve heard stories about the extraordinary—but usually ordinary—people who somehow lift automobiles off the trapped bodies of perfect strangers. It’s a phenomenon of superhuman strength, borne of adrenaline, called the “fear response,” according to an article in Scientific American.

Now, I certainly didn’t do anything superhuman last weekend. But I did keep going long after I thought I was all done in, and so did Dina. When my flight finally touched down in Sacramento, I’d been exhausted already for hours. But I still yanked my suitcase off the rotating carousel and hefted it, my carry-on bag, and my purse out to a shuttle bus headed for long-term parking. Then I found my car, tossed the luggage into it, and drove the final 36 miles** home.

Fortunately, at that time of night, there was almost no traffic.

And now, after about five hours of sleep? I’m still pretty tired, but not whupped. My batteries recharged some while I slept and will continue charging throughout the next day or two.

And I’m feeling OK, too. When I dragged my sorry self into the apartment in the wee hours of the morning, I’ll admit I felt like one gigantic ache. My hands throbbed, my feet throbbed … even my hair throbbed. I realized I’d been so busy and distracted during the travelling that I’d forgotten to take my usual pain-deadening doses of Tramadol during the day and evening. Well, no wonder I feel like angry trolls have used me as a punching bag, I thought. I took some with my other nighttime meds before finally allowing myself to tip over and drop into bed.

This morning I’m achy, but it’s manageable. My hands and feet remain stiff and swollen and my hips are grumbling under their breath at me. But you know, all that’s normal. I’m a lot tougher than I give myself credit for, sometimes.

I think it’s important that those of us who live with autoimmune arthritis take stock of just what we do routinely manage to accomplish each day. Because given what the disease takes away from us—normal, pain-free joints, energy, and overall well-being—we really are amazing. Even astonishing. And not just once in a lifetime, like the guy who lifts the 3,000-pound car off the hapless bicycle rider. We’re amazing every single day.

Which brings me back to the Joint Decisions Summit I participated in over the weekend: people who live with rheumatoid disease and other autoimmune diseases are, well, phenomenal.

“Now, Wren, my dear,” the negative little editor in my head murmurs into my ear, “isn’t ‘phenomenal’ just a little dramatic? Are you sure you really want to crow about how strong and brave you are when you know there are so many other people in the world who are far stronger and far braver than you? Really, now. Choose another word. Like ‘tough.’ ‘Tough’ just about covers it, don’t you think? Get me rewrite.”

Sometimes I just want to strangle my inner editor.

Nope. I meant just what I said. We really are phenomenal. We do things that the vast majority of ordinary people, who are like us in most other ways, could never do.

Take Dina, for example. During the Summit she told us—her 10 fellow autoimmune arthritis bloggers—about how rheumatoid disease destroyed her hip joints in just a few short years, stopping her from doing what she loved most in the world: running marathons. When she was diagnosed, her first rheumatologist told her she’d never run again; that in fact, she’d be in a wheelchair within a few years. Well, Dina fired that doctor—she simply wouldn’t accept such a thing. But her RD continued to erode her hip-joints, and eventually she had to have both replaced with titanium replicas. It took time, but she relearned how to walk—and then, to run. She entered some 5K races. And then some 10Ks. And then marathons.

Her doctors were really worried that she’d destroy her titanium joints, though, with all the pounding punishment marathons put them through, so finally, she compromised. She switched to competing in triathlons. You know, those crazy races where the contestants run, swim, and bike considerable distances, one right after the other, without resting in between. The latter two sports don’t jolt and jar and abuse the weight-bearing joints like running does, so Dina’s doctors reluctantly went along.

And you know what? Dina wins those races.

Is that not phenomenal?

And then there’s Mariah, who stopped taking the methotrexate that was keeping her RD under control so she and her husband could start a family. In severe, constant, sometimes disabling pain she carried her first son to term, gave birth, breastfed him, and—incredibly, courageously—became pregnant again. She gave birth to her second little boy a few months ago after a very, very painful pregnancy. With great reluctance she decide to wean her little guy more quickly this time so she could take methotrexate again and, with luck, be able to care for both her boys a little bit easier. She’s still in constant pain, but she hopes the MTX will start to work again soon. And if it doesn’t? She’ll try another drug, and another, until she finds one that finally helps to blunt and relieve her pain and slow the damage the disease is inflicting on her joints.

Mariah feels, right down to her toes, that the pain she endured over the last four years or so was worth it. She has the children she and her husband always wanted. And she’s determined to be the best Mom she can be, RD be damned. She writes about being pregnant and about being a mom with autoimmune arthritis on her blog, From This Point. Forward.

Phenomenal.

These were just two of the amazing stories I heard during the Joint Decisions Summit in Boston over the weekend. Here’s the thing: These incredible young women are bloggers who write about their personal experience of living with RD. They write about how they cope with the pain, the disability, the frustration, the sometimes crushing fatigue, and just get on with things as they pursue their dreams. They write hoping to help others like them live well in spite of the disease.

Because, you know, there are at least 1.2 million other Americans living with RD today. And almost all of them are also coping with it, living well in spite of it, and somehow managing to pursue their dreams. They aren’t all Moms and triathletes. They’re also guys who love motorcycles and guys who climb the Andes and businesswomen and dancers and journalists. They’re all … yes … ordinary, phenomenal people.

More about the Summit tomorrow. For now, this particular phenomenon needs to get some sleep.

*Janssen Biotech paid for my travel expenses for the summit, but all thoughts and opinions I’ve expressed here are my own.

**Heh. While googling the mileage from the Sacramento International Airport to my home just now, I discovered an alternate route that would have had me home in 19 miles (29 minutes vs. 45). Live and learn. 😉

Joint Decisions Summit, Day 1 — Toastie Toes

Hi, all!

I’m in Boston at the moment — a long, long way from home but hey, everyoneJointDecisionsLogo2014 can use a change of scenery once in a while. And what scenery! I’m at a hotel near Faneuil Hall, with skycrapers and U.S. history everywhere I look. I’m a happy camper.

I’m also happy to be taking part in the Joint Decisions Summit*, a gathering of autoimmune arthritis blogger/advocates, members of the SqueakyJoints.org arthritis community, and Jannsen Biotech. The reason for the Summit? To discuss and brainstorm ways for patients, doctors, and others interested in helping people with RA and other autoimmune arthritis diseases to better communicate and work together for help in coping with the disease and come closer to finding a cure.

All this is taking place during the American College of Rheumatology’s Annual Conference, which opens today. We’re surrounded–literally–by rheumatologists from all over the world. Many of us bloggers will be attending the conference tomorrow afternoon as members of the press. I hope to bring back some new and exciting information for you.

And now, here’s the best part: my fellow bloggers. Last night I got to meet:

  1. Carla Kienast—Carla’s Corner
  2. Angela Lundberg—Inflamed:  Living with Rheumatoid Arthritis
  3. Amanda John—All Flared Up
  4. Cathy Kramer—The Life and Adventures of Catepoo
  5. Dina Neils—The Titanium Triathlete
  6. Leslie Rott—Getting Closer to Myself
  7. Mariah Leach—From This Point. Forward.
  8. Eduardo Flores—Rheumatoid Arthritis Guy
  9. Rachelle Crow-Hercher—Spoonless Mama
  10. Brittany Johnson—The Hurt Blogger

I’m sorry I don’t have links to all their websites, but I’ll repost them later, when I’ve got a little more time.

I can’t tell you how delighted I was–and am–to meet all these great people! For me, this is a truly special event. I’ve lived for 27 years with RA without ever meeting–in the flesh, that is–another human being who shared this disease with me. And now, suddenly, there are ten–count ’em–10 of them here with me, eager to talk, share notes, commisserate, and most of all, laugh. They’ve traveled here to Boston from all over the U.S.; Eduardo (RA Guy) arrived yesterday from La Paz, Bolivia, an amazing city nestled high into a canyon high in Andes mountains.

Incredible. Also incredible: how cold it is here in Boston. Our hosts kindly supplied us with a heaping handful of HotHands chemical hand- and foot-warmers. When I first saw them, I chuckled and thought to myself, “aw, how cute. I won’t need them.”

Heh. My achy, persnickety feet, in my new, low heeled pumps, just about froze HotHandstoe3solid this morning when I went out for a light breakfast and a cup of coffee. So when I got back to my room, I decided to try the foot-warmers.

OMG. They work!

Thanks, HotHands! Thanks, SJ/Jannsen. Wow! My tootsies will be nice and warm all day long. I stuck the handwarmers into my jacket pockets, too–so when my sore fingers feel bleh during the day today, I can just stick them in my pockets for a little therapeutic heat. Incredible.

OK, guys. Gotta go–the summit starts soon. I’ll write more–and post pictures–soon.

*Janssen Biotech paid my travel expenses for the summit, but all thoughts and opinions expressed here are my own.

Remembering the gifts

For some reason, all my owies are on the right side of my body this morning. The ring finger of my right hand. My right elbow. The ankle and large toe of my right foot.

Why?

Who knows? Maybe I slept funny on that side during the night. The window in my room is on my right when I’m in bed; coolness flows in through the narrow slot I leave open for fresh air. Did the cold set into the joints? Not likely. And I use my right hand more, but that doesn’t explain why my foot hurts.

This is one of many baffling things about autoimmune rheumatoid disease: it causes pain in random places in the body from day to day, and sometimes even from hour to hour.

Fortunately, today’s discomfort is merely that: discomfort. It’s not disabling. As long as it stays muted at this low level, it won’t slow me down much, if at all. What it will do, however, is remind me constantly that I have this disease that won’t go away. It’ll make me vaguely apprehensive as the day goes on; with every sudden twinge or briefly amplified ache I’ll wonder if this is the one that signals the redwood shadowonset of a far more painful and disabling flare.

I’ve always tried to counter this low-level fear by going out of my way to notice the small beauties—the gifts—the world offers each of us every day. At the moment, for me it’s the delicious coolness of that draft of fresh air, and the shadow of the redwood tree’s branches the morning sun casts on the wall. The branches are moving gently in a light breeze, which is another gift. It’s been so unseasonably warm and still for the last week or so, a cool breeze that moves the air and tickles my skin is like ambrosia.

Noticing the gifts helps me keep things in perspective as I cope with my cranky dragon—and life’s other everyday problems. Noticing is a way to snap myself out of worry about the future (which I can’t predict or control anyway) and back into the present moment, the place I’m alive in here and now. Mindfullness—such an overused word these days, but a good one nonetheless—gives me a feeling of peace. And while it might not last for more than a few minutes or moments, I believe they make my life fuller and more rounded, and absolutely more joyful.

What gifts have you found today?

Changing for the better

I had my hair tinted yesterday. Today I had it trimmed. Both days I found sitting in the stylist’s chair a miserable chore. Both my hips ached, the knuckles of both hands were nauseous, and both feet felt like they’d been whacked and battered with truncheons wielded by scowling, aggravated trolls for hours on end.

My stylist was a 20-year-old, about-to-graduate beauty school student. That’s why my new look took so long—six hours all together. But my hair looks great! She did a terrific job with the color, the weave, and her scissors—and she was friendly and professional and full of humor. Kudos to the Paul Mitchell School in Sacramento.

I wish dropping 30 pounds could be so easy!

I’m feeling a lot better about the changes I’m making to be healthier. Slowly, I’m getting my mind around resuming my low-carb, high-protein, high-veggie, low-sugar-and-salt diet. After all, it can only help.Change And while my blood sugar is great right now, that doesn’t mean it will stay that way without some vigilance on my part.

Slowly, I’m accepting that coffee is Not My Friend. I’ve almost gotten to the point where I can drink just two, 8-ounce cups of joe a day without getting a horrid caffeine-withdrawal headache. I took a 45-minute walk the other day while Mom was at her physical therapy appointment—and I enjoyed it. So I’m working myself up to daily exercise, too. There are nice neighborhoods all around our new home that’ll be really pleasant for walking in. And our fitness room here at our new home should be finished and ready to use any day now.

What I haven’t managed, yet, is to talk myself into liking all these changes. Yes, I want to drop some weight. Yes, I really, really want to avoid a heart attack or stroke. Yes, I would prefer not to get type 2 diabetes, and yes, I want my muscles to be stronger so they can support my RA-compromised joints better.

I know my success in these things hinges on my attitude and my mind-set. What I’ve discovered about myself, though, is that I can’t force either to do like I want them to. It’s like my brain has to work it out subconsciously before it clicks over into “go” mode. Still, I’m trying.

Moving Mom took a lot of oomph out of me. I turned 58 in late October, and for the first time, I felt my age (even as I threw a childish tantrum and pity-party over my health). But I’m recovering. I keep telling myself how nice it will be to fit into my size 14 pants—I’ve got a closet full of them, most only worn a few times—and how nice it will be to tone up all the flab that’s built up everywhere over the last two years or so.

And I hope that making these changes will also have a positive effect on my RA. Actually, I know they will, even if achieving them won’t cure it or even necessarily send it into remission. If I feel better about myself, my RA will feel better, too.

Maybe change isn’t so bad, after all. 😉