A week in the life of an arthritis patient

One of the surprises I've experienced living with autoimmune arthritis has been how dismissive people can be. It's just a little arthritis, people say. Well, here's some tangible evidence of how a little arthritis changes a life.

These are the new additions this disease has brought to my life--one week's worth:

Supplements, pain meds, sleep meds, and chemotherapy. Yes. Chemotherapy. That little vial is methotrexate--a drug which was developed from mustard gas and is used to fight cancer in higher doses. That's how serious autoimmune arthritis is. What you don't see: the pneumonia and shingles vaccines and the TB test I had this week in preparation for adding another med after some "wait time" to give the vaccines time to do their work. In three weeks, I'll begin injecting Humira every other week in addition to weekly methotrexate.

I'm grateful for every thing in this photo. I have insurance that helps me pay the doctors, labs, and pharmacies. And I'm thankful for advances in medical research which have created new treatments that may reduce my disability and add years to a life that otherwise would be shortened by the chronic, systemic inflammation that accompanies autoimmune arthritis. Compared to those who began their fight with arthritis decades ago, when treatments were few and less effective, I have a good dose of hope to go with all these meds.

If I could add one thing to this weekly routine, it would be the understanding and patience of friends and acquaintances. It's hard to understand if you haven't fought the day-in, day-out battle that arthritis brings. Arthritis is real. Arthritis is serious. The kindest thing you can do for me, or anyone else dealing with this disease, is to treat it like it's something--not nothing. It is most definitely something.

The Long View

Last Sunday, rain clouds skirted us all day before breaking loose their burden into this unseasonably wet and cold spring. The skies mirrored another kind of weather: how I’ve been feeling—physically and, to some extent, emotionally—as my pain has worsened again.

Since being diagnosed with autoimmune arthritis, one of the hardest things to accept has been how freaking long it takes to measure progress. At first, I was puzzled and irritated when the rheumatologist scheduled my regular appointments two months apart. Didn’t he understand how much this disease was messing up my life? And when I had my “Mac truck” flare (after 6 weeks of apparent drug-induced remission) he took it in stride, called in a prescription of prednisone, and said he’d see me in a couple of weeks at my next scheduled appointment. I could barely walk. For him it was all in a day’s work.

His relaxed approach to what felt like an emergency bothered me until I realized it just takes that long. With the medications used for autoimmune arthritis—DMARDs and biologics—it takes one to two months before you know if they are doing a damn thing. And overlaid on this can be an ebb and flow of symptoms that are unrelated to any conscious interventions by patient or doctor. (For more on this, see RA Warrior’s description of common patterns of RA). In the midst of wondering whether a new treatment is working, a few good days raise your hopes. A string of bad days dashes them.

Six weeks ago the PA increased my dose of methotrexate. Give it a month, he said. And at five weeks, I started feeling better. Not all better. Not like the miracle of my first response to the metho. But I was taking less Vicodin, sleeping better. I dared to think it might be working. Maybe one more little tweak could get me back to near-remission. Maybe I could avoid adding a biologic and just switch to injectable metho which gives you 30% more punch for your dose compared to oral.

I felt better for several days—just long enough for me to start trusting it—then the pain and fatigue ramped up again, right back where I started. At my next appointment three weeks from now, if things haven’t gotten significantly better, the doctor will likely recommend adding a biologic.

The unpredictability of this disease has been teaching me about living in the moment. And yet there is a tension between being present to the “now” and living the long trajectory of this disease. It reminds me of how the stories in our Scripture often have integrity of their own, but find their depth of meaning in the narrative arc of the larger Story of God and His people. A good day may mean the beginning of remission, or it may mean nothing. It’s only in retrospect that the story begins to take its shape. But like many of us, I’m addicted to the long view.

A few weeks ago, I found a therapist who specializes in chronic pain and illness. (I’ve decided that I stand the best chance of living well with this disease if I tend every aspect of my health—from dental to mental—with consistency and thoroughness.) She asked me to start charting my pain against things like sleep quality, physical activity, and emotional or mental stress to see if I can uncover any patterns to the pain. I’ve tried this early on and found paying close attention to the ups and downs in my disease activity tended to tip me into depression. My therapist has encouraged me to try again, but to do so with as little expectation as possible. That is, to treat this as an experiment which may, or may not, reveal helpful conclusions. The challenge, then, is to avoid trying to make sense of every moment as it happens. Right now, I’m just gathering data.

We are creatures desperate for context, for meaning. Diseases like autoimmune arthritis don’t follow a play book. My challenge at the moment is finding a way to be proactive without craving a long-range plan. More and more, I’m finding moments where that seems possible. I count as progress those times I’ve found a certain peace in lying awake, sleep held at arm’s length by pain, the night stretching on and on. After I’m done fretting about what the lack of sleep will do to me the next day, after I’m done being pissed off—again—that I have this disease, and after I release—again—the worry that this pain is the outward sign of the inward destruction of my joints, after all this, I’m sometimes able to simply be in a way that I’ve never experienced before. In those moments, my pain doesn’t need to have meaning. It simply is. And there’s a trust that this long night contributes somehow to the arc of my life and to the way this life fits into God’s Story.

The Best Time to Have Arthritis, Or The Optimist’s Dilemma

Do you have any questions for the doctor?” I asked. I was making my lists—medications and questions—being a good patient.

“Just Is it ever going to get better?” Mark said.

The tenderness in his voice made my eyes brim. Yes, it all comes down to that question, doesn’t it?

The next day, I offered it up to D, the rheumatologist’s PA, apologetically: “I know what you’re going to say. But my husband needs to hear it from you. He wants to know if I’m going to get better.”

“Yes,” D said.

Yes?

I’d expected a solid I-don’t-know because the only thing certain about my experience of autoimmune arthritis has been its uncertainty. We might be able to get you a remission. This drug is promising. We expect to slow your joint damage. We’re unsure exactly what kind of arthritis you have, we just know it’s autoimmune. If this doesn’t work, we’ll try something else. Might-promising-expect-unsure-if. A bouquet of guesses ribboned with equivocation. My daily experience of this disease has been just as muddling. Day to day, the symptoms vary. I can’t tell you on a Monday if I’ll be up for a Wednesday night outing.

Add to this, the confusion of scientific studies one can read on the internet. Estimates for natural (untreated) remission rates in undifferentiated arthritis range between13% and 53%. If I fall in that 47 to 87% who don’t get a natural remission, and I don’t take the drugs, I’m playing chicken with the power of the inflammatory process to create not only joint damage, but to wreak havoc with my internal organs and blood vessels. Another article referenced in RAWarrior’s blog suggests you might as well flip a coin when deciding which drug to take. Humira and Enbrel—the latest drugs I'm considering—both reduce (not eliminate) joint symptoms in about 50 to 60% of patients.

D continued, “You won’t always be like this. You’re not in a flare. What you’re calling the ‘mac truck’—that was a flare. But you’re not controlled either. It can take 2 years to find the right combination of drugs to control your disease. But you will feel better than you do now”

There is some truth to the annoying statement: “This is the best time to have autoimmune arthritis.” There are many more drugs. Joint damage can often be stalled or slowed, buying years or decades of active life. But I’d suggest that no time is a good time, thank you very much. The journeys of others with autoimmune arthritis—those I’ve known in person or via the internet—argue against D’s optimism. Most people don’t get a remission without the use of serious drugs with serious, sometimes permanent, side effects. Drugs stop working, requiring changes in medication. Flares come out of the blue and leave them bedridden for days or even weeks. Joints degrade, and new joints become affected. My “arthritis friends” tell me that even in a best case scenario I will never be the same.

All of this has me wondering about the role of optimism in autoimmune arthritis. Even when things are going well, I don’t tend to be overly sunny. But I still want to be an optimist. When the pain gets bad, or the fatigue overwhelms, or when I’m just tired of exerting so much energy to do things that used to be effortless, I want to stay smiling, energetic, and positive. It's just so easy to get discouraged and angry. Hell, there are days when I’d happily take “paragon of quiet strength.”

Even if I could flip the sunshine switch inside myself, I wonder if optimism the best long term approach to this disease. In his book Good to Great: Why Some Companies Make the Leap and Others Don’t, Jim Collins interviewed Admiral Jim Stockdale who spent eight years as a prisoner of war in Vietnam. Stockdale said it was the optimists who didn’t make it out alive. He told Collins: “they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart.”

So I’m wondering how I might balance somewhere between blind optimism and despair—some place where I don’t ignore the reality of this disease but neither do I assume the worst. I’m wondering if this is what hope is.

Stockdale said, “You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.”

I consider what prevailing looked like for Stockdale. When Collins interviewed him, Stockdale still limped on a stiff leg that had never completely healed from the 20+ sessions of torture he’d endured. Yet Stockdale told Collins, “I never lost faith in the end of the story. I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which, in retrospect, I would not trade.”

I’m beginning to confront the brutal facts. Lately, there’s no such thing as a zero-pain day. Fatigue limits my “good” time to about 5 hours a day. I spend about 5 nights a week dealing with pain-induced insomnia in spite Vicodin and Neurontin, then sleeping away part of the morning. In the last week, I’ve finally accepted that the Type-A life I’ve lead to date is unsustainable. I will have to get help with my house and yard, limit my work at Holy Trinity to 5 hours a day, and drastically restrict my activities in the evenings when my pain and fatigue intensify.

It’s a work in progress. When I think of my "end of the story," of what prevailing might look like for me, I draw a blank. Chances are high that it will not look like a complete or permanent remission. The only thing I know for sure is that I will be changed by this illness, as Stockdale was by his imprisonment. I’m just beginning to see glimmers of the way this experience is transforming me—defining me, to use Stockdale’s words.

I guess this is where faith comes in. No pretty platitudes about God’s will, thank you. God doesn’t will suffering upon any of us. He does endure it with us in solidarity. In my better moments, I trust this illness to make me into more of God’s dream for me, something I definitely would not trade.