I’ve Been Sick for 10 Years

via Unsplash

Today marks 10 years since I got sick and didn’t get better. I have a lot of complicated feelings about the whole thing. 10 years ago today I felt a weird tingling and numb sensation radiating from my wrist to my elbow, and shortly after that it turned into joint pain. In the years that followed, each of my joints systematically became affected until I was completely disabled.

It’s been a long, exhausting journey—physically, mentally, and emotionally. I’ve been on Plaquenil and Prednisone for three months now. My disease is now under control; before I came down with the flu, I walked a whole mile—and didn’t pay for it. I walked a little over a quarter of a mile today. My plan was to walk the full mile over to Sandy’s, but she got sneaky and intercepted me. Still, it felt really good to walk—even though my anxiety was being an asshole and I was honest to goodness convinced that I was going to get hit by a car and die the entire time I was walking. 😂

I have Undifferentiated Connective Tissue Disease. Since being diagnosed in December, I’ve done some reading. My disease could go one of three ways: it could go completely into remission, never to return; it could stay UCTD, which would be manageable with my current treatment plan; it could become Lupus, a whole new ball game. Funny enough, I don’t worry so much about it being pre-Lupus anymore or sticking around, because Plaquenil has changed my life and as long as I can keep my health insurance, I’ll be okay. I do worry about losing my health insurance, though, because there’s no way I could afford these medications out of pocket, and no health insurance company would cover me under the Republican’s proposed replacement for the ACA. Without the ACA, I will be disabled again. Period.

Right now, though, I’m extremely grateful for my rheumatologist and the treatment plan he has me on. I’ve had few side effects from Plaquenil, and they’re definitely tolerable compared to debilitating joint pain, fatigue, and my other UCTD symptoms. Illnesses like the flu will trigger flareups, but they fade when I recover. In this moment, I have a happy ending—something I honestly hadn’t dared to hope for.

My plan right now is to keep taking my medication for as long as I can, and fight to keep my health insurance. For me and so many others, the ACA is the difference between life and death; being bedridden and writhing in agony is not living. Lately I’ve been living more than I have in the last 10 years, and I’ll go down swinging to keep it that way.

It’s Okay If You Can’t March

This morning my Instagram feed was full of pics about the upcoming Women’s March on Washington. Well, okay, books too, but the closer we get to the 21st, the more people are getting involved. This makes me incredibly proud, but also a little sad.

These days I’m lucky I can stand long enough to do dishes, never mind march for civil rights.

It doesn’t help that some of the slogans that people are using seem to reach out and pinch those of us who can’t march. I know they aren’t actually for us—they’re for those sitting by in apathy, doing nothing—but it still sucks that I can’t be there.

Still, I realized something.

These marches have historically been people more powerful joining hands with people less powerful to achieve the same goal. Every movement has been about someone stronger lifting up someone less strong—whether in voice, privilege, or ability.

It’s hard for me to let others do for me, when I’d rather do it myself. It’s difficult for me to just sit and watch, rather than participate.

I never thought I’d be sitting on this side of history; when reading about The March on Washington for Jobs and Freedom—AKA the civil rights march—as a kid, I always felt this burning passion inside of me. I knew, had I been born decades earlier, I would’ve marched right alongside those women and men. In reality, my body is the opposite of willing and able.

And that’s okay.

It’s also okay if you’re not marching, too.

You don’t have to explain why to anyone.

It’s okay.

In your heart, you know what you stand for. You know what you believe and who you support. And you can resist in other ways.

Keep breathing.

Keep making art.

Keep raising children who love.

Keep posting selfies.

Keep making posters for your town.

Keep denouncing hate.

Keep spreading love, even if in “small” ways.

Keep.

Just keep.

Because when someone hates you—for how you look, who you love, what illnesses you live with—the loudest torch you can carry is to keep living, in spite.

Let your fire blaze bright.


However, if it’s the cost of travel that’s holding you back from marching, there  are many sister marches happening all around the world. I had no idea until I saw a few overseas ones this morning on IG. There are even several in Connecticut, so I might actually be able to go to one, depending on how I feel. Click here to search by your state or country.

Then rise, baby, rise.