Free Fall

Photo by ian dooley on Unsplash

One of my greatest fears is falling. It’s not the height that scares me. It’s the fast lack of grip, the surge to the bottom. I don’t like being out of control.

Never have.

Ironically, a recurring theme in my life is losing control. I never learn to let go and enjoy the fall, see where it takes me.

Never will.

For the past four months, I’ve been fighting to keep my health insurance plan. My state changed the minimum annual income requirement back in March, and we’re now $400 over the mark. $400 is far from enough to cover the cost of a yearly deductible and monthly premium, plus co-pays and prescriptions. Yet in the state’s eyes, we should be able to afford it no problem. They don’t account for rent and heat. They don’t even look at your income after taxes.

We looked at my husband’s company’s insurance plan, too. Even though it’s a bit cheaper than one of the state market’s plans, we still can’t afford it.

We’re already struggling.

I’m really grateful that we had state insurance these past few years. Because of it, I was able to get a diagnosis and start treatment for my UCTD. Still, we can’t afford another plan, and we definitely can’t afford my treatment and monitoring without insurance.

I looked into several avenues, but they all came down to one thing: soon I’d be out of medicine.

Once I run out of medicine, my disease becomes aggressive. It isn’t long before I’m bedridden again and I’m unable to care for myself. To write. To live.

I felt myself spinning out of control. One of my other greatest fears is my disease. I’ve worked hard to get to where I am. I’ll be damned if I go back.

The fear is suffocating. My rheumatologist and I have determined that Plaquenil isn’t enough, that I need to add other medicines. Plaquenil has been so very therapeutic for me, but it’s not a magic bullet. I still have pain and stiffness, fatigue and brain fog, and other symptoms that may be related but definitely need further testing.

It doesn’t help that someone I love with an even more severe condition is losing her insurance, too. Chronically ill people rely on social services, but those programs are always the first to go when states need to make budget cuts.

I’m too scared to feel angry.

I have one last thing I can try. It’s a long shot, and I’m only going to have a small window. If I’m successful, it’ll be the net that catches me at the bottom. If I fail, well… I guess I’ll have to finally learn to let go.

The Real Cost of Chronic Illness

via some ecards

Chronic illness costs more than you’d think. Financially speaking, it’s the thousands of dollars spent on doctor’s appointments and medications. It’s the medicines, salves, and mobility aids not covered by insurance. It’s takeout in place of a home-cooked meal. It’s time lost at work due to sleepless nights and bone deep fatigue. It’s whole careers and goals, and starting over with new dreams and hopes.

There’s also an emotional toll.

It’s the frustration of finding the right treatment and the side effects of medications. It’s the devastation of years of pain. It’s evenings crying at the sink because it hurts to wash dishes when wrists bend to scrub. It’s the sharp inhalation of breath every time you bend over because knees won’t bend and hips shift as if on broken glass. It’s feeling exhausted after taking a shower, or skipping one because it’d only wipe you out completely.

Then there’s the pain of friends and family who don’t get it. It’s comments like “You’re not using your cane! You must be all better!” It’s dismissive belittling: “That’s not too heavy,” “You just need to walk more.” It’s the feigned interest, the change of subject.

The most substantial cost, though, comes when those close to you—the people you thought understood—actually don’t. It’s the priciest lesson, the deepest cut.

It’s a common occurrence for people with chronic illnesses. It happens to us all the time. We’re treated as an inconvenience—or worse, we’re treated as if we’re purposely inconveniencing someone else.

As if we have control over our illnesses or the weather.

Chronic illness teaches you who’s real and who isn’t, who truly belongs in your life. People like my mom and sister, who stopped by when I couldn’t go apple picking a few weeks ago and brought me apple cider donuts. They drank tea with me and turned an otherwise miserable and lonely afternoon into a nice memory.

All people like me need is a bit of understanding. We don’t enjoy canceling plans. It’s not fun being stuck home under an electric blanket and painkillers. I’d much rather be able to get out and live, but my body often has other plans. Slowly I’m learning to live around it, but it’s even harder to live around a broken heart.

Baby’s First Gray

It’s really more of a reddish blonde gray.

Today I hit two milestones: I reached 55K words for my work in progress (Any Other Love), and I yanked out my first gray hair.

I’m not proud to admit that I cried. My thick, very dark, 3B curls are my favorite feature. My hair has been relatively unscathed by my UCTD (aside from some thinning along my temples); with Plaquenil, it’s grown back in just as thick as it used to be. So yeah, I’m a little vain about my hair.

I did some whining and pouting, endured some of Mike’s jokes, then went to do the dishes.

“Hey,” he called. “Do you have any ink?”

“Fuck off!”

“I’m serious. I need to print a label.”

I’m going gray, but life goes on.

In an ironic twist, I was just talking about gray hairs last weekend with my Nana. She was saying how hers grow in a reddish blonde gray and we got to talking about dye. I said I’ve always planned on dying my hair a fun color when it goes gray, because for the first time in my life I won’t have to bleach it to death to get it to take the color.

Sigh.

I wouldn’t be me if I didn’t immediately start researching what happens when curly hair goes gray. Sometimes its curl type changes, but it almost always gets more coarse. So I’ll really have to baby it and moisturize it.

I may be going gray, but at least I wrote 5,000 words today.

Lessons Learned

via Unsplash

Five years ago, when I first started out on my publishing journey, I naively thought that I could use my existing social media for my new business. It wasn’t hard to separate business from personal at first, but everything changed when I signed with my publisher. Suddenly authors were friend-requesting me on Facebook, even though I’d resolved to keep my personal profile separate from my business page. I felt bad denying requests, though, and soon my feed became a mix of everything ever.

A friend suggested I make a separate account strictly for business. She’d done so and, even though it was one more account to manage, it’d helped her separate the two. I still stubbornly insisted that I only wanted one. Over the years, readers began friend-requesting me from my reader group. It was fun being friends with both readers and colleagues as well as my IRL family and friends, but it also got tricky.

For example, if I wanted to go on Facebook just for fun, there was no avoiding work-related things. If a friend tagged me in an off-color meme, I had to do damage control.

Keeping the two separate was getting more and more difficult. I kept tossing the idea around, but hesitated because creating a second account and moving people, pages, and groups around would be a gargantuan task. It wasn’t as if I had spare hours to just sit around cleaning up my social media act.

This weekend I decided it was time, though. Today I sat down and created a separate Facebook; soon I’ll be doing the same for Twitter. If you’re an author, reader, or someone else in the book biz and you get a friend request from this account, it’s really me. I’m friend-requesting here and there, though, so it doesn’t get too tedious or hard on my wrists. Feel free to add me if I haven’t already made it to you!

There’s an old saying that you can’t mix business with pleasure, and even though I love what I do, it’s still true. I’m really looking forward to being able to sign into Twitter, for example, and just see book stuff.

Speaking of book stuff, today I hit 28K for Any Other Love. I’m thinking about release dates now, and I’ll be able to share more info soon! 💜

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