RheumaBlog

Same dragon, different day.

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. 😉

Categories: RA

7 thoughts on “Climbing Back Down From the Summit

  1. ~Mariah~ says:

    Hi Wren! I just wanted to say how truly wonderful it was to finally meet you in person over the weekend! And I have to say that I feel similarly to you after that looooong journey this weekend! When I arrived back in Denver I couldn’t I couldn’t believe I still had to drive home in the middle of the night! ~;o) Thank you, also, for the kind words in this post. Though I don’t usually find the time to comment you have been a loving source of inspiration for me for a very long time. Hope you are well today!!

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  2. Eileen Harrison says:

    Glad you both enjoyed yourselves – and RA patients continue to be an inspiration to me who just has PMR. I do a massive amount on support forums in the UK – and I often want to send people having a whinge over to you to see what real pain is and what it is possible to do nevertheless.

    Joint decisions eh??

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  3. adrienne says:

    Don’t listen to your internal editor! You are phenomenal! I read your blog and feel your pain and know you are tough each day. I have given up flying across the country in one weekend because it takes too much out of me. It takes me a week to recover. I give you credit for doing it. And without Tramadol?! You are strong!

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  4. Yup, as Adrienne said, you are phenominal! Sorry the trip was so tough but glad it was so inspiring!

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  5. Cathy says:

    Wren, it was wonderful to meet you in person. Your comments over the years have really helped me along my journey and to finally give you a hug in person was priceless.

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  6. Eileen Harrison says:

    Wren – you look totally totally and utterly different! Are you sure you didn’t mix up a photo of one of the others 😉 Love it!

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    1. Wren says:

      Hi, Eileen–
      I seem to be one of those people who can change my whole identity just by changing my hair or adding a different pair of glasses. Can’t tell you the number of times I’ve had someone say that to me after a haircut or losing 20 pounds. To me, I look just the same… 😉

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