Doctor Day

In a few hours I’m seeing my rheumatologist. The main topic we’ll discuss during this appointment: Humira, and how it’s working for me.

My take: It’s not working. Since starting it three months ago, the symptoms of my rheumatoid disease have increased in severity. And I’ve basically been in one long, long flare that started soon after the second injection.

The most recent symptom? Three days of stiffness and pain in my left elbow. It didn’t disable the joint, but it was very uncomfortable upon movement and throbbed, with the occasional sharp, shooting pain, at rest.

The pain referred to my upper arm and down to my wrist. Today marks the fourth day, though it’s a bit less painful so far this morning.

To say I was—and am—dismayed is an understatement. In more than 26 years, I’ve never had an elbow flare up. I had real hope it would remain that way forever, but obviously, that’s not to be.

I’ve also experienced an on-again, off-again sensation of deep fatigue. That symptom first appeared about six weeks ago. I’ve been very lucky throughout my RD journey in that the fatigue that characterizes the disease has struck me only rarely. But this, too, is no longer the case.

I’m curious to see what my lab results (my session with the vampire was on Monday this week) say about the Humira and the state of my disease. Three months ago, they looked pretty good; my rheumatologist started me on Humira purely based on my increasingly problematic symptoms. So I suspect that my lab results will still be good, since that’s the sneaky way my rheuma-dragon works.

Will my doc switch me to a different biologic DMARD? Or will he suggest I stick to the Humira for another three months, giving it more time to work? To be honest, I’m expecting the latter response. I know this drug can take quite a long time to become effective, and it’s possible it will start working for me soon. Soon-ish. Maybe.

Or maybe not. Anyway, I’ll check back in later, after the appointment, with the decision. This is one of those instances where wishing for luck or crossing my fingers seems fairly useless; neither outcome—stopping the Humira to try another drug, or continuing it to see if it might finally work—offers much hope for any immediate relief. And I should know better than to expect a quick, positive outcome. RD—my wicked old dragon—doesn’t work that way.

A Poem for Sunday

You do not have to be good.
You do not have to walk on your knees
For a hundred miles through the desert, repenting.
You only have to let the soft animal of your bodyWildGeese
love what it loves.
Tell me about your despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting —
over and over announcing your place
in the family of things.

Mary Oliver

Inner Dialogue

Today is the third day of a dull, all-over flare about an hour ago.

I injected my latest Humira dose the day before yesterday. And I thought, “well, maybe I’m hurting a lot more today because I’m at the end of that last, two-week To Dodose.” The thought was both hopeful and resigned. If I was feeling worse because the Humira was wearing off, that meant it was actually working (I felt better after taking it). That was the hopeful part. On the other hand, more pain might simply mean my rheuma-dragon was getting stronger—and the Humira was another useless weapon.

But it’s only been a couple of days. Hopeful Wren tells me to be patient, let the Humira kick in. Pessimistic Wren tells me to chuck the happy-crappy and face the truth. The stuff doesn’t work.

Then rational Wren chimes in. These drugs, she says, can take a long time to work. Usually, three to six months. It’s been almost three months, yes, but that doesn’t mean the Humira won’t ever work. And you know when you see the doc, he’s going to tell you to be patient and give it another three months. And you’ll nod and say OK because, really, what else are you going to do?

Sigh. Naturally, I hoped this fancy, new (to me) biologic DMARD would quickly turn the tables on my rheumatoid disease. I was looking forward to waking up in the morning without being as stiff as the tin man. I thought it would be so nice toGet-Out-of-Flare-Free_21 put on my house robe with hands and fingers that didn’t gripe and yell with pain. I was looking forward to swinging my legs off the bed and standing up—and not even noticing my feet because, of course, there was no reason to notice them. No stiffness, no pain, no nothing.

And I was looking forward to going through my days without being constantly reminded—by suddenly aching joints, sudden twinges, constant low-level soreness, and a mild but insidious fatigue—that I have an incurable disease that may cripple or even kill me one day, whether I take medications for it or not.

Do you guys go through this too? This constant, involuntary inner dialogue you-get-used-to-itabout being sick? I get so tired of it. My mind’s constant grousing makes me feel like 1) a weak, sniveling wimp, 2) a complainer (even if I don’t say anything out loud to anyone), and 3) a histrionic hypochondriac.

Yeah, I know better. I’m really not any of those things.

My life up until age 31 was perfectly normal, with all of the normal illnesses and injuries: chicken pox, skinned knees, an occasional bout of flu, a sharp pneumonia and a couple of bad sprained ankles when I was a teen (platform shoes), and seasonal colds. I only thought about feeling bad when I felt bad, and that was relatively rare.

The same applies to those six years when my RD mysteriously went into medication-free remission. The only difference was that I can only recall a single cold during that period.

But when my rheumatoid disease is active, whether it’s mild or severe or somewhere in between, it forces my mind to dwell on it. And that makes me question my own feelings, and sometimes, my own reality.

On to more pleasant news: Mom and I dragged out the decorations and brought Christmas into our new home. This is a hard time of year for her; Christmas just hasn’t been the same for her since my Dad died, and the holiday brings with it 592014 Christmas 2 years of memories—with Dad as the central character.

But this year she was the one who brought up decorating the place. I’m so glad! She doesn’t miss him less, but maybe living in a place that’s not connected to memories of Dad is soothing her pain a little bit. I hope so. We had a good time putting up the tree, choosing and hanging the ornaments, talking about the memories each one brought to the surface, and setting out Santas and elves and pinecones and sparkly candles all over the place. It made us both laugh and smile, and you know what? There’s nothing better in the world than that.

Thanks for listening to me rant today. Felt good to put it in words—a catharsis, in a way. I hope this post finds you feeling good and enjoying the holiday season and the close of another year on this precious old planet we all call home.

Bad News About the Flu

Breaking News: This year’s flu vaccine is basically useless.2014-15 Flu

Here’s the scoop. Scientists weren’t able to identify this season’s most virulent strain until September, when it was too late to include it in the vaccine. So even if you’ve already had a flu shot to protect yourself, you can catch this flu.

Still, the vaccine does protect against several of the other strains of influenza floating around out there, so there’s that.

The new, nasty rogue strain, called H3N2, is a mutant. Dr. Thomas Frieden, Director of the Centers for Disease Control and Prevention, stated in the New York Times that so far, 91 percent of the approximately 1,200 flu samples tested since flu season started were of the H3N2 subtype of influenza A. Nearly all the rest were influenza B.

Frieden stated that in flu seasons when the H3 subtypes are more common than H1 subtypes, there tend to be more hospitalizations and deaths.

The CDC still recommends that you get the flu shot if you haven’t done so already. Why? It will protect you against the other flu bugs circulating this year: the swine flu, influenza B, and small numbers of the other H1 strains. And, at the very least, it may provide a weak defense against this newest, most virulent mutation, H3N2.

The CDC is urging doctors to quickly prescribe Tamiflu or Relenza—antivirals—without waiting for test results in patients that present with flu symptoms. In addition, it recommends that patients with asthma, diabetes, or lung or heart problems see a doctor without delay at the first sign of a possible flu.

You May Be at Greater Risk

People with weakened immune systems caused by disease or medications (like those of us with rheumatoid disease, psoriatic arthritis, lupus, and other autoimmune diseases, and who may also taking DMARDs that further weaken the immune system), the elderly, and children, and others should also see their doctor right away if they get flu symptoms. All are at greater risk of contracting the flu—and its complications, such as pneumonia, bronchitis, sinus infections or ear infections.

Although the antivirals Tamiflu and Relenza aren’t miracle drugs, the earlier they’re administered in the illness, the better they work. Although all they do, usually, is shorten the duration of the flu by one day, in a vulnerable patient, that 24-hour period could mean the difference between life and death.

So far, five children have died from flu-related illnesses this season.

What To Watch Out For

According to the CDC, people who have the flu often feel some or all of these signs and symptoms:

  • Fever* or feeling feverish/chills
  • Cough
  • Sore throat
  • Runny or stuffy nose
  • Muscle or body aches
  • Headaches
  • Fatigue (very tired)
  • Some people may have vomiting and diarrhea, though this is more common in children than adults.

*Keep in mind that not everyone who has the flu will have a fever.

Protect Yourself

While this season’s flu vaccine is fairly useless, there are still steps you can take to help protect yourself from catching the flu, no matter which strain it may be:

  1. Avoid close contact with people who are sick. And if you’re sick, avoid close contact with others to avoid spreading the illness.
  2. If you’re sick, stay home if you can. Help prevent others from catching your illness.
  3. Cover your mouth and nose with a tissue or your upper arm when you cough or sneeze.
  4. Wash your hands often to avoid picking up germs—or spreading them. Use soap and water, washing for at least 20 seconds. Don’t forget to scrub under your fingernails. If soap and water are unavailable, use an alcohol-based hand rub.
  5. Avoid touching your eyes, nose, and mouth. You can pick up a cold, flu, or other illnesses when you touch something contaminated with germs and then touch your eyes, nose, or mouth.
  6. Practice other good health habits. Clean and disinfect frequently touched surfaces at home, work, or school, particularly when someone is ill. Get plenty of sleep, drink plenty of water, eat nutritious, healthy foods, manage your stress, and be physically active.

It’s early in the flu season, but with the flu vaccine as weak as it is, this season may be a bad one. Please take good care of yourself and stay well.

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.