Around the Bend

My hands are held under cold water, an attempt to stop the blistering that began out of nowhere minutes ago. But the blisters continue to form, small clusters and large discrete wounds, as though my hands are being held over open fire.

I call to my sister, who looks at me sadly. “You should do something about that,” she says.

I stand in my doctor’s waiting room, arriving at 7:30 AM to ambush him as he arrives. I hold out my damaged hands. “Look,” I say, “Do you see? Now do you believe me?”

His wife and children escorted him to his office this morning, a happy, stable family. He looks at me with pity and mild disdain. “You don’t have an appointment, Maria. You need to make an appointment.”

Moments later I lie in a hospital bed. Did they believe me? Are they running tests?

Or have I finally been committed?

This is the dream. I wake up with my hands burning in pain, and I think, it wasn’t a dream at all. It takes minutes, half an hour, to be truly released from the nightmare, and it needs no interpretation.

I was diagnosed with fibromyalgia twelve years ago, often called a diagnosis of exclusion. In layman’s terms, this means my doctors tested me for everything, came up with nothing, and told me what I already knew: I had chronic pain.

It is difficult to discuss nonspecific chronic pain without sounding crazy. I look healthy. My skin is clear, my body unmarred.

Imagine if you will: Your right leg is broken. You know it’s broken. You can’t walk on it, can’t bend it. You can see your tibia protruding against the skin below your knee. You head to the emergency room, where they x-ray your leg.

And they tell you nothing is wrong. They show you the film, and your leg…looks fine.

This is the insanity of undiagnosed chronic pain. For twelve years, I’ve lived with not knowing, the pain coming and going, with months of little pain and then days, like blips on a screen, when the pain left me unable to move. With proper rest, I’ve been able to keep it at bay.

That is, until two months ago.

The pain returned – like the ex-con step-cousin you last ran into at your sister’s wedding and hoped to never see again – and this time he had a half empty bottle of Jack in one hand and a duffle bag in the other. This time, he was settling in.

The pain has swollen my joints, and I have trouble holding a cup in my left hand. Now it has seized my back, spasms keeping me prone for hours at a time. It won’t be ignored.

I’m back at my doctor’s office, and I’m wide awake.

We’ve tested for rheumatoid arthritis and lupus, both negative. I’ve seen a physical medicine specialist who has helped me with back pain in the past. She sees the swelling in my joints but is unsure what’s happening.

But if the pain can hunker down, if it can settle in for the long haul, so can I.

And this time, I’ll be my own advocate. I will see rheumatologists, endocrinologists, hematologists, and neurologists. I have great insurance, and I plan on brandishing it like a six-gun. I live in Pittsburgh, a great city for doctors. By the end of this, half of them just might know my name.

I’m Maria. My pain is real. Let’s talk.