Control

RECEPTIONIST: We don't take uninsured patients
Me: I am willing to pay cash up front.
RECEPTIONIST (channeling Louis C.K.): Suck a bag of dicks.
Me: Excu....hello? Hello?

Cold calling Neurologists and begging for appointments is heart breaking. Not a single place in a 100 mile radius would give me an appointment. The Neurologist I saw once will not give me an appointment until November 12th - I last saw that Neurologist in April. No follow-up. No medication adjustment. Nothing.

Uninsured. Undermedicated. Uncontrolled. This has been my life so far with Epilepsy.

Hello diary, it's me, RQ. Have you heard? I'm running out of medication. Either I find someone willing to adjust and refill my prescription or I start weaning myself off of the medication now - for fear of status epilepticus from sudden withdrawal from the too low dose of Keppra that I currently take. 

The well is running dry. My options are running out. It's coming down to Zero Hour.

I got a call yesterday. A family doctor was willing to see me as a new patient. When? TODAY! Seriously, today. Really?

I nervously printed out my color coded Excel seizure journal calendar pages and my bulletpoint one page list of types of seizures that I have. This could be another appointment where I hand over cash, nothing is done because my condition is "outside my specialty". I am told "good luck" and shuffled out the door.

I wasn't getting my hopes up. How could I? The realization that my medication is running out and that things may only get worse is very real.

I sat in the lobby filling out a stack of new patient paperwork. SEE ATTACHMENT inked in draftsman penned small-caps on many lines with my boyfriend's favorite pen that I said I'd stop taking from his desk.

NURSE: RQ? 
Me: Yes.

I follow the nurse to the scale. I try not to look at the numbers. I look. Yeah, I hope to hell these boots weigh ten pounds.

NURSE: How tall are you?
Me: Five-four

I follow the nurse to the exam room.

NURSE: Hop up on the table.

She grabs my hand.

NURSE: You are absolutely frozen!
Me: I know. I don't feel well in the afternoons. Medicine wearing off.
NURSE: Blood pressure a bit high, probably just nervous to be in a doctor's office.

The nurse leaves after recording my elevated blood pressure. I wait for the doctor.

I am freezing. It's already started. My right temporal lobe is throbbing deep below the surface. Every sound is heightened. Loud. The mumble of a patient and doctor in the next room - blasting in my mind - too loud - disturbing - I try to ignore it. I can feel the fear creeping up. Rising epigastic sensations? Check. All the stereotypical signs are there.

She enters. Blonde haired, petite and smiling warmly. I like her immediately. She shakes my hand and notes my icy skin.

I am already having trouble speaking. I am having a seizure in front of a doctor. It's real. It's here. It's now. I try to hold it together through jitters - fighting to get words out. It is good that I have printed all of my documentation. It is good that I only need to shakily point and say a few words.

And she turned around and took me by the hand
And said I've lost control again.
And how I'll never know just why or understand
She said I've lost control again.
And she screamed out kicking on her side
And said I've lost control again.
And seized up on the floor, I thought she'd die.
She said I've lost control.
She's lost control again.
She's lost control.
She's lost control again.
She's lost control.

- Joy Division - She's Lost Control 

I cry when she writes me an adjusted prescription - a higher dosage of medication - enough to hopefully stop the uncontrollable seizures.

ME: You are saving my life

She sniffs and her eyes mist over. She tells me we are going to get things under control.