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. ;)

Searching for my smile

I haz the sad.

I haz the sad.

I’ve now taken two doses of Humira—a month’s worth—but my rheuma-dragon continues to bite and gnaw the joints of my hands, ankles, and feet with undiminished enthusiasm, like a dog with a well-loved bone. If I hadn’t actually injected the stuff myself, I’d never believe I’d even taken it.

Yes, I’m disappointed that I don’t feel better. Yes, I know this stuff can take quite some time to show results—if it’s going to. I’ve studied up on Humira and the other biologics, and I’ve read what many other bloggers who’ve taken it or are taking it have written about it. I know that biologic DMARDs, like their cousins, the chemical DMARDs, are fey and fickle. Some people get immediate results. Some get results only after a longish “waiting period” has passed. And for some people, these drugs never work at all—in which case, they have to try another one, going through the whole waiting process again. And maybe again … and again …

I’ve told myself to be realistic and not expect anything. But you know how it is. Deep down inside, I was hoping I might be one of those lucky souls who sees quick and dramatic results.

Seems I’m not. Still … maybe soon. In the meantime, I’m sucking it up.

And now, a new health challenge. About a month ago, just before my lady-parts exam, the nurse took my vitals. Blood pressure, weight, temperature, the usual. My blood pressure was sky-high, even after waiting for a while and taking it a second, then a third time. After my exam, they sent me straight to my primary care doctor.

At the primary care clinic, my blood pressure remained so high my doctor stuck a monitor on me, made me sit in a wheelchair, and had me trotted right over to the emergency room. And there I stayed for the next three hours, following the ER doc’s instructions—“Be calm. Think happy thoughts. Take a nap.”—and hooked up to monitors. Eventually, my BP came down. It was still higher than it was supposed to be, but I wasn’t in imminent danger of a stroke anymore. (Wow. I felt just fine, too!) They sent me back to my primary care doctor.

She gave me an injection to bring my BP down further—she felt it was still uncomfortably high and wasn’t very happy with the ER doc. She had me wait in her clinic for another hour and a half while the medicine made my BP drop. Finally, she felt it was low enough that I could safely leave. Before I did, though, she prescribed a daily blood pressure medication.

I saw her again today for another follow-up. She adjusted the BP med dose for the second time. Seems my blood pressure is still higher than it should be. In the meantime, I’m slowly cutting back on coffee (which I’ve already done over the last couple of years—this is even more). I’m down to just a couple of cups a day, but as my doctor reminded me, the goal is no coffee at all. That’s not going to be easy for me. I get horrible caffeine withdrawal headaches every time I decrease how much I drink. That’s ugly enough, but you know what? I don’t want to give my coffee up entirely. I’ve been drinking it since I was 16 years old. I love coffee.

Why is it we always have to nix the good stuff? Why can’t I give up Brussels sprouts instead?

Other changes I’ve got to make because of blood pressure: cut even more salt out of my diet, and go on a diet. Again. I guess I might as well. Without any salt, my food’s going to taste like kaka, anyway. And of course, I must exercise. Which, I remind myself, is also good for the RA. Sigh.

I’m feeling sort of low these days, but I’m searching for my smile. It’s out there somewhere.

Ebola and RA: Should You Worry?

Well, sure.

Both are unpleasant, both can make you feel awful, and both are potentially deadly. But rheumatoid arthritis is a chronic autoimmune disease and Ebola is a virus, a relative of the bug that causes the common cold.

But how about this: if you have rheumatoid arthritis, should you be more

Ebola virus

The Ebola Virus

concerned about catching the Ebola virus? Are you more susceptible to it? Should you be scared?

No, maybe, and no.

Unless you’re a health care provider working directly with an Ebola patient, or you’ve recently visited the African countries Liberia, Sierra Leone, Guinea, or you’ve come into direct contact with the bodily fluids of an Ebola patient, your chances of actually catching Ebola are about the same as your chances of traveling to the moon tomorrow morning. You shouldn’t be in the least concerned, not even if you’re taking disease modifying anti-rheumatic drugs (DMARDs) that suppress the immune system. They might make it harder for your body to fight the virus off if you’re exposed, but (see above) you probably won’t be.

Want to know what you should be scared of? The flu.

That’s right. Influenza. It’s also a virus, just like the common cold (rhinovirus) and Ebola. Unlike Ebola, though, the flu virus is everywhere. It’s all over the world, and it’s seasonal—it thrives and passes easily from person to person in cool and cold weather. In the Western Hemisphere, autumn is well underway—and flu season has arrived. It’ll be with us until spring.

Between April and October of this year, Ebola killed 4,555 people, the vast majority of them living in the three African countries mentioned above.

The Flu Virus

The Flu Virus

In the last 10 years, the flu killed an average of 32,743 people each year in the U.S. alone. Some years more people died, some less. It depends on several factors: which flu strain is dominant (some are more deadly than others), the weather, the efficacy of the flu vaccine in any given year, and whether people actually take the vaccine.

And that’s the thing. There is no vaccine (yet) for Ebola. But there is for influenza. Every year, medical science makes an informed, educated guess about which strains of flu will dominate in the coming year and develop a vaccine against it. And every fall, the vaccine is available to anyone who wants to get it.

To clear up a silly myth: You can’t get the flu from the flu vaccine. Although the virus in the vaccine is dead, it still stimulates your body to create antibodies to attack the live virus, should you contract it. Those antibodies will seek it out and destroy the bug, and you won’t get sick. Some people might get some flu-like symptoms after receiving the vaccine, but they’ll be mild and will go away within a day or two. Others might develop redness, tenderness, or swelling at the vaccine site, but that will go away within a couple of days, too.

Another myth: getting the flu shot will make your RA flare. Um, no. It won’t. There are a million different reasons your RA might flare up—stress, weather changes, fatigue, you’re wearing blue today—but getting a flu shot isn’t one of them.

Once you’ve taken the vaccine, your body needs about two weeks to build up a strong immunity to the flu strains the vaccine fights. During that time you can still catch the flu. And you can still catch any other strains of flu that aren’t in the vaccine at any time during the season.

If you have rheumatoid arthritis, should you get a flu shot?

Oh, absolutely. RA affects the immune system, making it harder for you to fight off any type of infection, including from the flu. And if you take chemical or especially biologic DMARDs—disease modifying anti-rheumatic drugs—to control the progression of your RA and its symptoms, your immune system is

The Flu Shot

The Flu Shot

even further compromised. You’re more susceptible to the flu, may get a more severe case of it, and may be more susceptible to further complications, such as pneumonia.

If you have RA or other forms of inflammatory arthritis, getting the flu vaccine is one of the smartest things you can do every year.

The Centers for Disease Control and Prevention recommends that everyone 6 months old and older get the seasonal flu vaccine that’s injected into the muscle of the upper arm.

The flu vaccine is also available as a nasal mist. People with RA or other types of inflammatory arthritis should not take the vaccine in this form.

Getting the flu shot doesn’t mean you can’t pass the flu on to others. Flu is transmitted by person-to-person contact. If you touch something that someone who’s contagious with the flu has touched, you can easily pick up the virus and pass it on to someone else. Avoid this by:

  • Washing your hands frequently with soap and water. If they’re not available, use an alcohol-based hand-rub.
  • Avoid contact with people who have the flu if you can.

Flu symptoms include:

  • Fever/Chills
  • Cough
  • Sore throat
  • Runny or stuffy nose
  • Body aches
  • Headache
  • Fatigue

If you feel like you might have the flu, contact your doctor immediately. He or she will decide if you need to take an antiviral medication or stop taking your RA medication.

The fear-mongering media has whipped up a fear-and-loathing frenzy over Ebola, a deadly virus that has almost no chance of becoming epidemic in the U.S. or any other developed nations. We really have nothing to fear from it.

The flu, on the other hand, can and will kill tens of thousands of Americans this year—but somehow, that’s not as exciting or sexy as Ebola, so it doesn’t get much mention. Thank goodness we can protect ourselves from the flu with a vaccine.

Maybe someday they’ll have one for Ebola, too, so that no one—anywhere in the world—can suffer terrible illness and death from it ever again.

References:

Dragon

Black-DragonHe’s awake.

Sure, he’s still sleepy. He’s clumsy, a little disoriented, his dreams only partly shredding away as he stretches his limbs and slowly uncurls his long, spiky tail, which he switches back and forth like a cat when he’s alert and hunting.

He has outrageous morning breath. Dragon-breath. It burns.

The dragon yawns. Snaps his jaws. A hot bolt flashes through my knee, causing me to cry out in pain and surprise. Then, just like that, the pain is gone. I flex the joint, shake my head and go about my business, and I soon forget the incident. But in the back of my mind, a few levels down and out of sight, I’m wary. Once upon a time, a long time ago, I’d have blithely gone on my way, carefree and unaware of the danger ahead. When the dragon ambushed me and attacked, I’d fight him and come out alive but wounded.

See, I’ve been this way before. Here there be dragons.

Am I being childish, giving my rheumatoid arthritis a tangible form, however imaginary? Maybe so, but it helps me cope with the fear, reducing this incurable, dreadfully painful and disabling disease down into a monster of more reasonable, less frightening proportions. Today, when the rheuma dragon tries to bite, I’m ready. I’m wearing a fine, strong coat of mail made of interwoven molecules of adalimumab, leflunomide, plaquenil, and sulfasalazine. Over it I wear the hardened armor of knowledge. My sword is light and strong, forged out of hard-won experience.

But most important, my spirits are high. I’ve streaked my face and body with the woad of hope, mixed liberally with laughter. There is no better weapon against the rheuma dragon than this. It’s the first defense—and the last. As long as I wear my blue woad, he cannot penetrate the stone castle of my body.

Yes, the dragon can hurt me. He can scar my ramparts and dig at my foundation with his thick, sharp claws, but he cannot get in, ever, unless I lose my hope and quell my laughter.