Updated: Nov 18, 2018
It’s been two months since my last post (approximately). A lot has happened in that time, even though it amazingly still feels like very little.
I’m writing another book
I’ve written about a third of another book. I don’t want to give too much away since it’s quite far from finished and seems to be a popular subject (I’ve put a twist on it), but that’s not so bad for a couple months of work! It’s in the dark fantasy genre, which is a new one for me, but thus far I’m really digging it. At my peak, I’ve written 2,000 – 3,000 words over a couple of days.
The content is a lot different than If I Let You Go (the eBook is currently .99c, by the way!), which definitely explains why it’s easier to write. The characters are more complex and there is a boatload of backstory, but the environment itself is pretty much Earth as we know it. Modern day. There’s a monster or two, but you know, for the most part, the same world.
I’m also working off of an outline this time, so the work is 95% creative. I’m not thinking about logistics while trying to be prose-y. That doesn’t mean I don’t deviate from the outline or get sent on adventures I wasn’t expecting that allow me to add on to the existing outline, but it does make the “work” part of writing less burdensome and dragging.
I’m really looking forward to finishing this one. I think it’s a fun twist on a mythological creature and a unique take on modern issues. It’s dark, but somehow uplifting.
In my personal life…
I’m not ready to “out” myself in the professional way – really go to town and start rallying for awareness – but I have been recently diagnosed with Rheumatoid Arthritis.
One day in December, I noticed a pain in my finger while wrapping Christmas gifts. Two weeks later, it was still there, so I made an appointment with my primary care doctor thinking that maybe I had carpal tunnel, even though it didn’t seem that way. He noticed swelling in my hands, my wrists, and sent me for bloodwork – most of which came back fishy. Soon I experienced pain in my hands so bad I couldn’t do dishes. Holding a door open for someone made me want to cry out. I had wondered why I’d been so tired and falling asleep early most nights, but hadn’t made the RA connection. When the diagnosis first came in, I wasted few nights just crying on the couch because I felt like I didn’t know my body anymore. I was experiencing a lot of stress, and it “activated” my first flare-up.
A specialist put me on prednisone and it makes day-to-day tasks bearable, but it’s now in my knees, hip, ankles, feet, shoulders, elbows – one or two parts of the body a day, and I never know which it’ll be to prepare. I don’t know how bad it’ll be day-to-day. Some days I limp. Some days I’m walking on water. I can’t be on prednisone forever, though, which leaves me to experiment with long-term options.
It’s scary, although the people in my life say I’m handling it well. I’m doing okay on the prednisone. I’m still in the discovery phase, exhausted, and learning more about RA and what I can do to relieve the pain and fatigue. The statistics are frightening and inconsistent. One website says 33% of those diagnosed go on disability within 10 years of diagnosis, another says 66%. On average, those diagnosed can expect to live 10-15 years less than a “normal” person.
There is so much I want to do in life. I want to write books without using Dragon or other speech-to-text software. I want to travel the world – see Italy and Australia and Japan and experience what it’s like to live a little differently. If I can’t earn enough money to live from writing, I want to at least have a career in something I enjoy doing rather than just something I can physically do. I worry about how the disease will affect me financially, and how soon (if ever) certain occupations will be out of my reach.
But the treatments are always improving, and doctors know more about how lifestyle affects the disease than in the past. I know people who have worked for a long time with Rheumatoid Arthritis. Who’ve traveled, done sports.
That doesn’t stop it from being a discouraging revelation. I need to change my lifestyle and I’m starting to look at life in a different way. Why am I putting off travel? What exactly is it I want out of life or a career, and what compromises am I okay with making if that time comes? Why am I reading lame blog posts like this one when I could be doing what I really want and writing books? Lastly, why am I stressing out about things that truly don’t benefit my happiness, or others’ happiness in general?
Writing as therapy
Writing helps me forget about the pain and the fact that I’m going through a mental crisis regarding how I want to spend my life.
I know I’m not alone in that. There is a huge #spoonie writer community on Twitter. We face unique challenges in getting work done, so we share tips and vent when we’re having an extra sh*tty day. It can feel lonely, not knowing other people IRL who have an autoimmune disease. On my bad days, I’ve had to ask for help opening a bag of cheese. Sometimes I can’t even handle a pill bottle, as if that’s not more insult to add to injury.
Some days my hands hurt too much to type, but on the pred, those days are few and far between. I can take breaks to go do something else. At home, I’ll binge-watch a TV show, usually. Hated Altered Carbon at first, but now that I’ve blown through the entire first season, I’m in love.
I don’t know if I’ll have so many good days once I’m kicked off the medicine (soon) and on to the next one, but I have hope.
So, it’s been two months since my last blog post. I usually try to keep posts relatively impersonal, but thought I would make an exception here. It’s a part of my life experience and will certainly make its way into another book at some point.
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