Tag Archives: lupus

Creating a Writing Lifestyle | Managing Health

I’ve been having a hard time accepting that I am sick and will never get better. After six years of seeing various specialists, my current rheumatologist has determined that I am probably in the early stages of Lupus. I’ve focused so much on finding out “what,” I never really spent much time grieving my old life. Lately, I’ve been really frustrated that it takes all of my energy just to get through a five-hour shift at work, and that it takes about a half hour for me to get out of bed in the morning. While trying to reach my daily word count goals and manage some promotion, I struggle with things like joint pain, fatigue, GI issues, and Lupus fog, for starters.

But, writing is not only what I do—it’s also who I am. I made the decision in October 2011 to be a professional writer: make a living off my fiction, and continue to improve my skills. This means that every day, no matter how I feel, I have to do something to move forward. Luckily, writing is not a fast-paced career like, say, working in retail is. I can take breaks when I need to. It’s not physically hard at all to prop myself up in my chair with pillows. It is, however, mentally draining, especially on days when I’m already at low energy.

Coffee helps, and Emergen-C gives me a boost of B vitamins. The most important thing, though, is knowing when to work and when to rest. It sounds easy, but it isn’t when you have a chronic illness. When you have a cold, you can push yourself because you know in about a week, it’ll be gone anyway. I never know how long a flareup is going to last. Pushing myself one day can cost me dearly for an entire week. I now have to measure my every move.

Sometimes, I’m not sure how I do it. There are nights when simply reading through a manuscript is too exhausting. Trying to juggle my part-time “day job” at the department store, my chronic illness, and my writing career often feels overwhelming, but simultaneously motivates me. I may not be able to change how I feel, but I can control what I make of it. I don’t want to be the sick girl who can’t work. Because writing is something I love and am good at, I’ve turned my illness into a sort of game: become a full-time author so that I don’t have to worry about struggling to keep a regular job. Building my writing career also means improving my quality of life.

To my surprise, Laura Hillenbrand, author of Seabiscuit, suffers from Chronic Fatigue Syndrome. She talks about utilizing her best time of day, the morning, to get her writing done. A documentary about Ida Kolader, a young woman living with Lupus, looks at how life is “twenty percent what happens to you, and eighty percent how you deal with it.” I’ve decided that my writing is my eighty percent.

What’s your eighty percent? Do you have a chronic illness? How do you balance your writing career with your health?

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Creating a Writing Lifestyle
Part I: Getting Disciplined

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Next Time: How my responsibilities impact my writing career, and how I make it all work.

I’ve Gained Momentum… and a Flareup

February is flying by. I’m proud to say that I am, at this point, consistently making $10 a month in sales. So far, I’ve made nearly $15 this month. This isn’t at all a living, but I’m super excited because it’s demonstrating growth and a steady income. Things can only get better from here for me! I’d love to be able to say, come wedding time, that I can live off my writing income. I’ve estimated that having Sade in the Wall in print will be a huge game changer for me.

Who knew you could get sunburn without leaving the house?

Who knew you could get sunburn without leaving the house?

I am, however, struggling. I’m having a major flareup. Every day is an iron maiden made up of joint pain, nausea, GI issues, fatigue, and this ultra cute rash on my face that resembles sunburn. I’m having trouble thinking, and sleeping. Today I felt like I lived in a complete fog.

I don’t see my rheumatologist until March, but he did say to call him. I didn’t get the chance today—mostly out of stubbornness, to be honest—but I will be calling him tomorrow.

I haven’t noticed a difference with Plaquenil yet. We did drop down my dosage from 400 to 200mg because of some issues I had adjusting to it, but I’m wondering if we should increase it back to 400. I’m going to ask him. I’m also going to ask him if there’s anything else I can try for the pain.

Tylenol doesn’t do much on its own. When I take it with Tramadol, it dulls it down quite a bit, but stupid Tramadol still makes me, um, high, for lack of a better word. This is okay if I’m home and don’t have to drive or work, but I am trying to continue working part-time (which has been difficult, because my pain is severely impacting my performance and attendance). I’m also trying to build up my writing career at home.

I’m so scared and anxious, because I have no idea what’s going to happen. The longer I’ve been sick, the more my symptoms seem like Lupus (which is what my rheumatologist is thinking). I’ve noticed that my flareups and joint pain are getting more and more intense. I have been canceling plans left and right, and am having a harder and harder time getting through the day without crying.

I’ve also fallen a bit behind on production. Sandpaper Fidelity will probably be late this week. I haven’t touched Ermengarde, Zombie Slayer in a couple days. I didn’t get to work on Secondhand Mom at all this weekend. I know my health is more important, but writing is all I’ve got right now. It might sound dramatic, but it’s true.

Still, I’m taking it one day at a time. That’s all I can do (aside from eating chocolate and drinking wine [the latter of which is few and far between, since it's bad for my liver with Tramadol in my life so much]). I’m lucky to have such amazing friends and family, and so many caring readers. You guys keep me going! If this is Lupus, watch out; I’ve got an army!