Tag Archives: benlysta

You’re invited

It feels a little outrageous to post a photo of myself here, but if I haven’t seen you in a while, you should probably know that I chopped my hair off. I did it because the new lupus treatment I’m on, Benlysta, is making me lose a little more hair than usual. It’s not quite a pixie cut, because it had to be long enough to cover the thinnest patches in the back, but I love it. In a way, it’s liberating. It means my body’s changing.

This summer, I’ve been able to open jars with the best of ‘em. I’m caning, because I can chop without pain. I’m riding my bike. (I went 36 miles with a group of super-supportive girls last weekend.) I’m running. I’m doing yoga, getting back into physical form the way any human has to. (Energy, it turns out, does not equal fitness. Pity.)

As far as I can tell, the Benlysta is responsible for these changes. Last fall, I felt relatively good, but the winter was one of the roughest, health-wise. I was hoping that eating gluten-free and getting regular acupuncture would help, but that’s not how it worked out. It was the new dope that did the trick.

But Benlysta isn’t a cure for lupus, as much as having an afternoon of IV infusions every month might feel like a good curing. It’s a medication. Benlysta will hopefully enable me to decrease doses of steroids and the other chemotherapy-type drug I’m taking, but deep down, I know that the part of lupus I hate—the fatigue, the weird body aches, the joint pain—is still there. I’m enjoying its respite, but it will be back. It will be my albatross, like it is for so many other lupus patients. Until there’s a cure, it will simply always be there.

Since 2004, almost yearly, I’ve done fundraisers to help support arthritis or lupus foundations of some sort. This year will mark my 5th Walk for Lupus in Seattle. It’s phenomenally rewarding to think that in some small way, the money we’ve raised over the years may have helped develop and approve Benlysta. But more than anything, it makes me that much more motivated to continue giving. Phase 3 Benlysta trials are focusing on lupus nephritis—the particular kind of lupus I have, which affects the kidneys—and will hopefully refine the treatments further.

art by hannah viano

I call my team Lupus Minimus, because once, when I went to sign up, I saw a team called Lupus Sucks, and I almost cried. Lupus is something I live with, in the background, like an eerie nightlight that occasionally shines a bit too bright. But the goal here isn’t to justify any sort of negativity. The goal of this walk isn’t to say this is why I suffer. The goal is to say this is why I live.

Thus far, I’ve done the walk with friends and family. Those that can’t be in Seattle donate to the Lupus Foundation, often in small bits and pieces. Each year, a similar gang has come to support me, and to support lupus research. I love those people. But as a whole, we’re a little limited.

So this year, I’m inviting you, whoever you are. Come. Walk or run, I don’t care. You don’t have to be a Benlysta Systa. It’s only 5k, and if you take a shortcut, I promise no one will notice. Just be there on October 6th, if you’re in town, because helping a stranger neither you or I know might do your karma a little good. Because you like wearing purple, even if it means itchy legwarmers. Because you like doughnuts. Or just because on a possibly rainy Saturday in October, you’d like nothing better than to take a walk to support something important to me.

Sign up to walk or run on October 6th (or donate) here.

And thank you.



Filed under lupus

The trappings of summer

My favorite fork

“COMFORT IS A TRAP,” read the road graffiti on the bike path in front of me. My thoughts bounced first to my bicycle seat (I was, in fact, comfortable, which isn’t always the case), then rattled around beside the author’s annoying negativity, and eventually settled around the last few weeks.

This summer has been comfortable for me. I’ve been riding my bike, and making an ass of myself on a stand-up paddleboard in Montana, and reading Suffering Succotash on a bench in the park. I’ve been working at a patient, delicious pace. I’ve been calling this The Summer of Jess, because my goal for July (and maybe August) has been to relax and rejuvenate. Because I’m trying to revel in summer in a way I haven’t over the past few years. Because I’m celebrating the effects of my new lupus drug. (And because everyone wants a holiday named after them, right?) I’m firmly against using “summer” as a verb, but that’s really what I’m doing. I’m summering.

But back to comfort. It sounds bad, but it’s true, it’s a trap. Right now I can’t imagine working after Graham goes to bed, which has been the norm for me for so many months. I can’t imagine holing up to work in a coffee shop, because these days, the windows are always open. I can’t imagine washing doughnut dishes until my fingers crack, because it hasn’t been necessary. In so many ways, it’s bliss. But every time I feel my brain starting to relax, I instinctively tense up, just a little. My brain works like an engine; it has to be warm to move forward efficiently. It’s hard to trust that it will restart again.

My body feels the trappings of comfort, also. These days, living is easy. The Benlysta is working, and it’s wonderful. I usually wake up with zero pain. I love how the body delivers a dose of amnesia with discomfort; I’ve almost forgotten how much it hurt, just months ago, to pour milk into my coffee first thing in the morning, or to type, or to pick up my hefty 3-year-old. I’ve been picked for Team Lucky in the side effects department, but the effects I do have are a little shocking. They come snaking off the end of my hairbrush, and curling into the corners of the bathroom, and twisting, rather disgustingly, around anything that will stand still in the shower stall. I have thin hair to begin with, but honestly, having to trade the mane for a shiny new Benlysta body has come as a bit of a surprise. I feel a little betrayed by my scalp. I’ve spent far too many minutes surfing Pinterest for a new, shorter hairstyle.

But oh, that body. For July, I am focusing on the body. I’m feeding it whatever it wants – these days, spoonfuls of the parsley pesto I’m hoarding from the garden’s dramatic bolt, wrapped around potatoes, whirled into vinaigrettes, dolloped into soups. I’m working this body, and resting it. In August, or maybe September, when the brain starts up again, I’ll decide on a haircut, and just see what comes next.

Parsley Pesto (PDF)
Serving suggestions: Fold into pasta. Spread inside a panini. Whisk into vinaigrette. Slather on toast. Stuff into chicken breasts. Layer inside caprese. Stir into soup. Mix with goat cheese for crackers. Eat with a spoon. Toss with fresh vegetables and nuts for a pretty salad, nestled into Bibb lettuce: tomatoes and pine nuts, roasted beets and walnuts, etc. Make chicken salad. Or freeze, for another season, when we’re not so produce-lucky.

TIME: 15 minutes (more if toasting pine nuts)
MAKES: About 1 1/2 cups

2 cloves garlic, crushed
1/2 cup toasted pine nuts
4 cups parsley (packed into a big 4-cup liquid measure)
1 tablespoon freshly squeezed lemon juice
1/2 teaspoon salt
Freshly ground pepper, to taste
1 cup extra virgin olive oil
1 cup loosely packed freshly grated Parmesan cheese

Whirl garlic and pine nuts in a large food processor until very finely chopped. Add the parsley in three additions, pulsing until chopped between each addition. Add the lemon juice, salt, and pepper, and blend. With the machine running, add the olive oil in a slow, steady stream. Scrape down the sides of the bowl with a plastic spatula, add the cheese, and blend just until combined. Serve immediately, or store in an airtight container* in the refrigerator up to 2 weeks or in the freezer up to 6 months.

*The less air the pesto is exposed to, the less chance there is of it turning brown. I put mine in Ball jar, then either press a small piece of plastic wrap directly onto the surface of the pesto underneath the lid, or cover the pesto with a layer of olive oil before sealing. I find plastic wrap works better when freezing, just be sure to tuck all the plastic neatly under the lid, so no air gets in.


Filed under garden, gluten-free, Lunch, recipe