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.

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12 Comments

Filed under lupus

12 responses to “You’re invited

  1. Hi Jess,
    I came to your site by way of Remedial Eating. Glad to take a peek. I enjoy your writing. Congratulations on your cookbook; and, if I remember correctly another one is forthcoming?!

    I am so sorry you are dealing with lupus. For the past seven months I’ve been dealing with some cancer stuff. Sometimes life is not easy.

    Very nice to meet you. Love your new haircut ! I am now a follower of your site, so I look forward to reading more of your stories and recipes.
    Sincerely,
    Kelly Turnbull

  2. chornerdevine

    Wish we could be there!!! And yes – love the new style!

  3. Linda

    Hi Jess,

    It’s good to see someone else with chronic pain and nasty side effects prevailing! Mine is from another source, but same feelings. I always say “Every day above ground is a good day!” Some days I have to say it more than once…..8-) What helps me is going to work and being with other people, and pretending I’m okay. Being nice to other people helps me.

    Wish I could walk w/you, but I’ll be thinking of you and your fight!

  4. Erina

    Loving the new ‘do. Stylish, practical…and chic! Go lady!

  5. Jess — I found you through Nancie McDermott. I, too, have lupus nephritis and completely understand your feelings. Here’s to continued improvement through your Benlysta treatments! Take care of yourself! I am also a cookbook author — tell me about yours?

    Best,
    Elizabeth Sims
    Asheville, NC

    • Elizabeth! Too funny. Do you know Jess Goldman Fuong? Same job, same disease :) Love the club! Please click on cookbooks, above, and I’ll contact you via FB…

  6. Jess, So glad you are getting a respite; and you’re new “do” is great. Funny how a haircut, even for “new” kinds of reasons, can really shift things. I’ll be thinking of you on your walk–and look forward to hearing more about this….sending love,

    Sally

  7. Hi, we emailed about six months ago. I also have lupus, Sjogren’s etc and have a cooking blog called Good Better Best Food. Your updates on Benlysta are encouraging. I am waiting on the details of a potential clinical trial for Sjogren’s. Oh and I am gluten free 2.5 years.

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