You can’t always get what you want

Denial keeps trying to peek its head back in and tell me that I can keep doing my full-time job.

Even though I couldn’t go in at all today either, for the second day in a row. I was so stressed about my job that I got zero sleep last night, and that’s not even an exaggeration. I didn’t even briefly doze off. There are few things worse than a night without sleep — except a night without sleep when you have MS.

I so badly want to be working full-time. But doing so has also been a hard slap in the face with reality: I have gotten much worse in the past couple years. Even though I don’t want it to be true, I can’t really work FT anymore. But oh how I love the paychecks from doing so!

Maybe I’ll find some type of job I can do from home that has a flexible schedule. I just need to be able to get enough rest. The truth of the matter is that I was doing much better when I could get all the sleep I needed. It effectively masked most of my symptoms, which fooled me into thinking I wasn’t really that sick.

I’m still going to ask my employer about flex options but I don’t think my odds are good.

Realizing that I really am this sick is sobering–and kind of scary. I see what happens when I’m not able to take care of myself. Other people can get by on just a few hours of sleep. I can’t. I need insane amounts of sleep.

The other scary part, the thing I don’t know how to change, is the fact that being sick in this country is terrifying unless you’re rich. Just today a musician I like died, ultimately because he didn’t have health insurance. He likely could have survived with better and more timely treatment, but instead a formerly healthy 41-year-old husband and father ended up on hospice then dying.

I feel like I need to get out of this country if I hope to have access to affordable medical care. But where do I go? How do I afford to get there? I feel like this country is on a rapid decline and it’s no place to be if you’re not a straight, white, wealthy Republican male.

I don’t want handouts. It’s just very scary to be in a place where if I can’t afford medical treatment, I could die. Or where I have to make decisions about whether I should seek medical attention based on whether I have enough money for the copays.

I probably do need to see a neurologist and a therapist and get another MRI. But these things are all too expensive, so I tell myself I can live without them. Which I’m sure I technically can, but it seems like it shouldn’t be too much to want the same standard of health care I had just 20 years ago.

Back then, I remember going to the gynecologist and having her do an ultrasound, in office, just to look at my problematic ovaries. That wasn’t uncommon, actually. And I don’t remember the last time I had one, because now it’s a $150 copay.

There’s also the fact that the cardiologist wanted me to come in for a test because my mom had a heart attack at a young age and therefore I’m high-risk. But the test was $600 and had to be paid in full before the service, so I didn’t get it done.

And I have insurance. It’s just not very good insurance, even though I’d be worse off without it.

I don’t know what happened to this country in the past 20 years. I have some political parties and figures I like more than others, but ultimately that doesn’t matter because they all worked together to screw the little guy, aka me.

I want to feel like someone will have my back and really be able to do something if things ever get really bad with my health. But I know that they won’t.

My husband loves me and is a great advocate for my health, especially when I’m hospitalized. But even he only has so much power, because power really means money and there’s often not enough to get me the treatments I need.

Because unless you’re rich or have excellent insurance (or both), you’re just kinda screwed if you get sick. Which I am.

And being sick is a lot scarier when you feel like the powers that be don’t care that you’re sick. You’re expendable, just another statistic.

I’m expendable.

And increasingly I wish I could live somewhere that wasn’t the case.

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