That’s Just the Beginning of the Beginning.

I have an ear ache that throbs so bad it’s hard to chew.

I have two feeding tubes for these very reasons- so I can keep weight on, and fight off infection better, and eat when complications inevitably arise (and also my stomach doesn’t work; that whole thing)…. But sometimes the “setting up” of the tubes when I’m hurting, and recovering from something where bending hurts, and the ordering of supplies, and the feeding tube bags we have to buy ourselves from a sort of weird medical supply eBay….

It's all TOO MUCH when you’re mostly by yourself.

Ear infections and sinus infections and All infections are a hallmark of this thing called being a mutant… but it hurts to lay my head on that side of the pillow at night, but my other side if where my surgery was and that hip won’t stop throbbing.

It throbbed before the surgery. It has now after. It does when I held perfectly still, terrified of messing anything up. It has when I stood up a few weeks later and told my friends: “I’ve decided I am healed.” Sometimes it feels like a decision, you know?

It isn’t… so it keeps hurting. I flip to the right and hurt. I flip to the left and hurt. This morning my cat Baryshnikov decided to climb over and off-of my hurt side as I was in that between-dream-world where we are aware of the fact we should get up but haven’t yet, and it hurt so bad I nearly sat straight up. (But I didn’t because that hurts too.)

I email someone on my team and let them know. This will create a domino of events that will not lead to an immediate salve, for those who are wondering. “Tell someone about it,” we say, or “Go to your doctor,” and fail to realize that that’s just the beginning of the beginning.

I email my team and they say to drop off a sputum culture, so I try to schedule that into my day and hope the mucus-coughing gods shine gently upon me. The testing of sputum takes awhile, and then I’ll follow up with my team if they have any ideas. In the meantime, they say to let my PCP know. “My ear hurts,” I tell him, like a small child wanting to skip class, “I don’t think it’s my tooth and I don’t think it’s my jaw….” – But I also am not the arbiter of my own and never know what I’m talking about. That’s what I SHOULD say.

We chase the pain. We chase the infection and the markers and the team says to notify the other team and the other team says it’s not their jurisdiction to notify the other specialist and that specialist says they can’t see you for months and then you consider Urgent Care but their meds didn’t help last time and that’s why you’re still feeling this way and then you wonder if you should have ever emailed to begin with.

Staying alive, you see, is a To Do list that never ends.

My ear hurts…. But I keeping chewing.

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