The Pain Scale

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She will get off the phone and burst into tears.

She already knows this when she hears, “Hi. It’s Dr. A.” Even above the Bluetooth-induced cacophony that sounds like a wind tunnel, that she secretly wishes she could stand inside for the breeze upon her skin—which intellectually makes no sense because she knows there is no windstorm inside her doctor’s car—she can hear it.

Frustration. Disbelief. Failure.

“The results are very unsatisfying.”

This is what Dr. A, hereinafter known as Dr. A+ opens with.

“There were large experts in the room who were struggling.”

Dr. A+ tells her that although several theories were mulled, then mashed into medical pulp, not-a-one makes complete sense. The only one that comes close is something called Erythromelalgia.

Because Dr. A+ is such a tenacious medical mofo, she had already presented this theory to her back in October when they first began working together.

Erythromelalgia is when blood vessels in the skin are deregulated; they constrict and dilate more than they should. But not all of the theoretical dots connect.

“Medicine just isn’t advanced enough to give what you have a name.”

“So was this," meaning Grand Rounds with 40 Derms, "like, my Mayo Clinic?” she asks, her lip trembling with cliché.

And this is why Dr. A+ earns her modifier. She tells her that for as great as doc's current employer is (USC), the NIH or Mayo might very well be the next / last stop on this dermatological train.

Then, Lip Trembling Girl gets off the phone and bursts into tears.

She calls her husband.

She calls her sponsor.

(Wrong order.)

Then she Googles Erythromelalgia and finds a 17-page document at raredisorders.org prepared by Dr. Davis, Professor of Dermatology at the Mayo Clinic.

She learns that she does indeed have some of the hallmarks of this condition, but not all: Intense burning, severe redness and increased skin temperature (Does feeling hot count?) that may be episodic or almost continuous in nature.

But not swelling. She doesn’t have swelling.

It affects the feet, and sometimes the hands. But in her body, it has affected her arms and thighs…and upper back, and lower legs, and ankles.

But not her hands and feet.

She will learn that it primarily affects women in middle age. And that it affects 1.3 out 100,000 persons.

Or 13 out of 1 million people.

And that, “although treatment response is variable, experts indicate that many achieve significant alleviation of symptoms with appropriate medication regimens: In addition, although uncommon, remissions have been reported in some patients.”

Alleviate, not eradicate. The tears roll down her face.

But she doesn’t have Erythromelalgia. Just something that kinda, sorta looks like it some of the time.

Is that enough?

She will scream and cry and slam the bedroom door. She will act like a child, because that’s how she feels. Like she no longer has any control. That her life is no longer her own. That it is run by Pain.

She writes in 3rd person because she wants this to be happening to someone else. She is never with reprieve. She is always aware. As her eyes flutter open. As she writes. And when she turns off the light.

She will probably cry again tonight, but crying and trying are not mutually exclusive. In fact, sometimes tears lubricate the process.

And so try she will. From medications like Misoprostol that smoothes the blood vessels (and sounds like cheap Russian vodka), to creating a vision board for her acupuncturist. From Carbamazepine (for bipolar and epilepsy), to guided meditation. From SSRIs to ACV (with The Mother!).

On Tuesday she will go for her 6-year kidney transplant clinic, and on Wednesday she will go to acupuncture. From West to East. Somewhere inside this interminable distance there has to be an answer.

So fuck you, Pain. I do have a say. And I can hear it above the windstorm.

Oh heck!! And so sorry! But, my gosh woman, you sure can write! — CJ Fisher
You certainly write beautifully. — Ingrid Geyer
I think it is fantastic that you are writing a book... What a wonderful and engaging writer you are, but you also have presence for visual story telling. — Amy Sundby Jeanchaiyaphum