the Magical Neighborhood of Pain Relief

"Wait," my doctor said. "You mean you haven’t been to the pain clinic in Neurology yet?”

“No,” I answered. “I called earlier today and they told me I needed to see you about the two momentary losses of vision this afternoon and for a referral. That’s why I’m here now.”

“Oh,” she said. “I thought you’d been there already, a long time ago, but now I see that I was reading your chart too fast before, that I misinterpreted the Neurology visits associated with your back injury, and just  assumed you’d already been there. Let’s get you up there asap, ok?”

OK, sure.

In that moment, I have a sinking feeling that she’s passing the buck, as if the chronic migraine that I suffer from is something she just doesn’t want to hear about anymore. But I push that feeling away, since I know that she’s also operating in a web of rules, all good ones I’m sure, rules that evolve in a place as giant and coordinated as my health care provider is.

I want to say, for the record, that we’ve always received excellent care there. The only small exception for me, I hesitate to say it, is around the issue of my head, where there is this constant changing, slipping, diminution. One drug worked, then they stopped offering it. Another drug worked, then I developed what is termed an allergic reaction, so that was off the table, too. Another drug was offered that, honestly, offers mild relief and a stomach ache. All along, the pain medication that softens the sharp corners of the migraine so I can function has been harder and harder to get. Thanks, junkies, for making my life more difficult. 

Chronic pain can make you feel desperate in a survival-way, like you might cry or lose your shit at any moment. I am so sick of feeling this way and of having to carry on, as if nothing were wrong.

When my doctor first walked into the room the other day and I greeted her warmly, as I always do, because she fascinates me, with her loud, fast talking and the way she doesn’t finish her sentences, leaping from subject to subject, one time even drawing me a map of the Yucatan on the back of a flyer for Weight Loss Clinics when I said we were about to travel there and she wanted to show me some Not To Be Missed sights, she paused.

“You’re not mad at me? Sometimes I have patients in here who are so angry that I won’t refill their prescriptions, or who complain about the tone of my emails. They come in, and they’re so angry.”

Not me, I said. Nope.

When you have chronic pain and you need drugs, you learn early on that there’s a balance to be struck between complaining just enough and demanding. The demanding side of things has unfortunate consequences, like getting flagged in the system as drug-seeking. If that were to happen to me, or, more correctly, if that were to happen to me again (since it did once, when my doctor had this idea that I didn’t have a herniated disc and was using too much pain medication until an MRI revealed a disc herniated in two places), then I’d be hosed.

So yeah, it’s a delicate balance between advocating for yourself, just wanting, wanting so badly, not to be in pain, to be able to do simple things like everyone else, like go to work, like enjoy your life, like not be crippled by the total shut-down of the migraine, and advocating too hard.

Corny, sure, but going to the pain clinic this morning, finally, now that I’ve gotten the referral, is a little bit like a trip to a quiet Disneyland – one without, I cross my fingers, a lot of flickering fluorescent lights and noise. I guard against putting too much hope in it, remembering the first time I did go to the actual Disneyland, 11 years old with my little sisters, 7 and 5, in tow, disappointedly aware of the artifice in the Haunted House ride, wishing it were real, suffering again the let-down of realizing that the magic Trolley wasn’t magic after all, it was just Mr. Rogers pushing a button, out of sight.

Because I’ve had this same headache, with varying degrees of intensity, for over 10 days now. So yeah, magic, or at least better drugs, is totally on my agenda.

I am trying not to hope unduly for relief. That’s sad, right? Of course, I should hope for relief. But that’s another thing about chronic migraine pain: it really wears you down. As does the fear of getting shut out of the system, of having avenues of pain management shut down.

I just want to feel better. I just want to work. I just want this weight lifted off my neck.

I don’t think it’s too much to ask. And though I say I’m guarding against hope, still I am looking forward to what happens at 8:15 this morning in the Neighborhood of Pain Relief. If nothing else, like I always say, it’ll be an experience.

But really, really, I’m hoping everyone gets together on this – Santa and Mr Rogers and King Friday and Mr Disney and the doctor and the nurses: please, I've been very, very good and I just want to feel better, ok? Just better, that’s all.

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