Posts tagged ‘lupus’

Role Reboot

It occurred to me that I linked my essay “The Year I Was Diagnosed With Lupus” to here, but that I never actually told you the circumstances of how I started reading Role Reboot and why I was so interested in publishing with them (and have been interested in doing so for the last year).

I first discovered Role Reboot after I started reading Emily Rapp’s Little Seal Blog. I believe I found Little Seal after Taylor Swift released her song “Ronan” about a different Ronan. I loved Rapp’s writing, and so I googled her and found her first book, and then the essays that she has published with Role Reboot and other places, as well. I liked that Role Reboot didn’t shy away from the nitty gritty of life, because that is what life is for many people: situations that you wish were different but are powerless to change.

I like reading about people who have atypical experiences. In Star Trek, the Vulcans say, “Infinite diversity in infinite combination,” and I believe that to be true of people, though there are experiences that are universal, each person experiences things differently. Sometimes, media can be so monotonous that it feels as though the same things happen over and over and over. To find a place where people were writing about things I’d never experienced was an incredible joy.

My experiences of life have also been quite different. Most 24 year olds don’t undergo treatment for their third autoimmune disease. Most 24 year olds aren’t incapacitated by their symptoms. So a year ago, when I first wrote things that didn’t quite fit with my memoir on chronic illness, my first thought was that maybe they were things that could be adapted for publication by Role Reboot. Almost a year later, I had an essay, not one of the pieces I’d written a year earlier, but an essay that worked on the same themes as the pieces of a year ago, published by Role Reboot, and I was ecstatic. Chronic illness isn’t a subject that many journals will broach. It is depressing. It is difficult. It is fraught. And it is scary. But I didn’t think that that would be a problem in this case. I submitted to Role Reboot first, and told myself that they would reject it. But if they had rejected it, I had no idea where else to submit it with any hope of publication.

When I heard that Role Reboot had accepted my essay, then entitled ‘The Lupus Year’, I was ecstatic.

I am so happy to be back to feeling like a writer, and I am hopeful that this coming academic year will bring more essays published, and perhaps… Perhaps it will even bring a book deal (I HOPE).


Protein Shakes and UGG Boots

I’ve had an incredibly sensitive stomach for about 10 years now, due to years and years of undiagnosed celiac, acid reflux, and then treatment. For years, I’ve tried to have a lot of smoothies when the weather gets super hot and humid, because that’s when I tend to be most nauseated. I’ve tried lots of different brands, and most recently, I’ve had to make sure that they’re all gluten free. I’ve had SunWarrior, PlantFusion, Phood, Shakeology, and probably others that I don’t even remember, too.

I love Shakeology, but it is expensive, so I drink PlantFusion and Phood much more regularly, and Phood is one of my new obsessions. I recently bought a 2 lb tub of Phood after drinking a few samples, and I bought a blender bottle (which I’ve coveted for some time) and I loved it so much that I went back and bought a second bottle!

I need to have a substantial breakfast, otherwise I’m off all day, but I can’t eat solid food without a ton of nausea early in the morning, and on nannying days, I’m up at 5:20 and at work at 6:20, but shakes and smoothies do the trick! A Phood shake (I use chocolate nut milk to make it even richer) will keep me full for a few hours easily, and generally does so without too much nausea, or no more nausea than I would have if I didn’t have a shake. It’s my new go-to, and the dense nutrients of a high quality protein powder like Phood or Shakeology means that I have a lot of energy because my body is getting what it needs and it doesn’t have to do a whole lot of digesting.

One of the other “side effects” of having been sick is that I have something called Raynaud’s Phenomenon. My feet and hands have compromised circulation, and get cold, numb, discolored, and swollen. Because my feet are almost always freezing, my UGG boots have been a Godsend this year. I bought my first pair in September, after wearing last year’s well-worn boots into the summer, because I had pain so bad in my toes and feet that I put all of my warm-weather shoes away. I knew that if I was wearing my old boots in August, I would need especially warm boots for the winter, and I’ve warn my UGGs nearly every day since then.

I’m sure I look like quite a picture in my sweats and spoonie-friendly clothes, with UGG boots and a blender bottle, but the older I get, the more comfortable I am with just letting things be and letting it all be out there. At the end of the day, you have to do what you have to do.

The Year I Was Diagnosed With Lupus, my essay published by Role Reboot.

I was 23, and a newly minted Master of Fine Arts, when I left my family in New York to join the Creation Care program at Camp Mokule’ia in Waialua, O’ahu, Hawai’i. Creation Care was an 11-month-long program, and one of a number of faith-based internships run by the Episcopal Service Corps. The program was everything I’d wanted, and though I was terrified to leave my family for such a long period of time, I tried to remain focused on the fact that I would be living in a tropical paradise for 48 weeks…

Continue reading my essay over on Role Reboot!