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Wednesday, November 14, 2012

Another Whamble (on neurologists, side-effects and protective custody)

I needed some good news. In Idaho people are pretty well convinced our country is going to hell in a hand basket. They're loaded with Copenhagen and conviction, as riled as i would've been had the alternative candidate come out on top in the election. A bunch of Chicken Littles squawkin around here.

We're considering moving again. We wouldn't go too far, and we have all intentions of returning to our lovely Moscow town, our little liberal oasis. As well-versed as i am in the exercise of boxing up all my belongings and schlepping them somewhere else, it's daunting. By the time i hit high school i'd moved 14 times (not including hippy hops to different houses). I've moved 4-6 times since then depending on how you count. I'd be fine with staying put a while. I swear i would.

Especially since the assimilation here was a such bitch. It'll be bushels easier having my sister with me this time around (i moved here a year or so before she did), but i hate the breaking-in stages of being in a new place. Yuck. We've had our growing pains, but there've definitely been times it seemed the only thing keeping me afloat was this community. People at all levels and throughout the system have gone to bat for me. That is priceless. 

On the flip side, however, there have been a few nightmares like the taser-happy cop, the a-hole paramedic and the local neurologist. In my quest for a pick-me-up, i called the neurologist's office to confirm the rumors of her imminent retirement are true. The receptionist gave me the glorious affirmative, YES! So at least there's that. Finally, nobody will suffer at the hands of this woman again (at least for the next month until the world ends).

Don't get me wrong, i'm overwhelmingly grateful for the competent, caring medical professionals out there. I'm indebted to them more than i can articulate. I'd take up arms and battle on their behalf if it came down to it.

But the bad ones... ooohhh the bad ones. My blood boils knowing now there are other patients who've had similarly terrible experiences with this medical practitioner. I've been to a lot of doctors. Neurologists seem to be a fairly kooky bunch, but mostly good, well-intentioned people. But this lady, this lady takes the cake. I'll go so far as to say she may be a demon incarnate. We're so vulnerable as patients and she seems to pray on this, picking on threadbare, insecure victims like a heartless predator with a sadistic, power-mongering God complex or something. 

It was traumatic. I think i have PTSD from this doctor. I was totally duped thinking she wasn't a wackjob and actually cared.  First off, she started me on 2 new drugs and glossed over the side-effects, basically, "you might have facial widening, gum hyperplasia and increased body hair", nevermind discussing potentially life-threatening side effects, but no worries, i can read the pamphlet.

Then, i saw her a few more times. Each appointment i waited at least an hour an a half to see her. Okay, i can understand a practice being busy. I won't fault a doctor for spending extra time with patients ever. We did routine blood-level draws of medications and scheduling EEGs; everything seemed pretty copacetic to me. (I was still having seizures, but she seemed to be working with me.)

Then it got weird. I was downtown and ate shit on some concrete. The EMT's knew she was my doctor so for some reason instead of taking me into the hospital, they called her and she agreed to see me in her office. They walked me there (i don't remember that part but afterwards, there's about 20 minutesish where i can interact with the world, but i don't remember any of it.) What i do remember is standing in her office puking in her sink, the kind where it feels like bucking broncos in your gut, bilious and violent and head splitting. 

I felt awful (both physically and for making a mess in her office). She had her receptionist walk me over to the hospital for a blood draw. I puked in a red wastebasket as they pulled the sample up into the vials. The receptionist told me i was free to go home. I did a couple circles in search of a bathroom, but i couldn't find one so i made a bee-line out one of the doors and hurled in a bush outside.

I made it home, my head spinning and slept on my couch for a few hours until i heard someone bang on the door. "Come in" i uttered from my prone position on the sofa. A cop entered. "Nevermind go back out!" (I didn't say.) I stepped outside. Three patrol cars were parked at the curb, lights whirling. They were taking me into protective custody. "It took three of you?" I didn't have energy to argue. 
Salmon River Winter '09

It was about 7 pm and they'd been instructed to take me into the E.R. where the lovely neurologist, had agreed to see me again. I was pissed, especially since she didn't saunter in until 11:30 or Midnight and wouldn't let me leave until i consented to a CT scan (even though i was no longer vomiting, my pupils were normal, etc., etc.). By the time i got discharged, it was 1:30 in the morning, but protective custody is a mandatory 72 hour hold in Idaho, so it was even more time-consuming rigamarole while my lieutenant friend got a hold of the district attorney and they finally let me go. By the time i walked home (a mile or two), it was basically dawn and i had a biochem exam at 7. 

It seemed about the least conducive strategy to reduce seizures (stress and no sleep). The doctor has both a secretary and a receptionist; they all could have phoned me, plus they'd billed me a number of times, so they knew my address, but instead they send the police. I should've fired her on the spot. It was definitely a red flag, but i gave her the benefit of the doubt on account that i was throwing up in her office after a blow to the head so cops or not, she was practicing some cover-your-ass medicine.

Against my better judgement, i saw her again. Her tactic was a nip-it-in-the-bud approach, and i was ready to stop eating shit and hitting my head so she added some new meds to the mix. I was on 5 (one was PRN, but as-needed was daily). She didn't decrease any doses. Usually side-effects abate for the most part after a few weeks, but after a month of not being able to walk straight i couldn't take it any more. 

I was pulled over every other day for public intoxication (and you know it's bad if people are reporting you in a fairly tolerant college town).  The levels would fluctuate throughout the day. My normally 10-15 minute walk home would take upwards of 3 hours. It was two steps forward, one step back. When levels peaked, my world would ass-over-tea-kettle. It was like Fear and Loathing minus the euphoria. Once i was at the farmer's market and it was all i could do to not take out small children or merchandise tables. (It's no wonder i can't land a job.) For weeks i looked like the town drunk. 

Frat boys yelled at me from their balconies when i mis-timed my stumble home with the end of a football game. I was afraid i'd veer into traffic if i tried to stay on the sidewalk so i attempted to negotiate my way across an adjacent hillside. The uneven ground proved an even greater challenge. They yelled and whooped when i fell. I was laughing too, which didn't help, but i knew how it must've looked. 

I had to cling to a chain link fence when i encountered some construction that blocked the sidewalk. Cars raced by as i waited for a break in the traffic, holding on for my life. I might have cried, or maybe it was just sweat and stress and the scent of metal.

I was miserable, desperate, couldn't ride my bike, couldn't play sports, couldn't sleep, couldn't focus, couldn't read. I finally had another appointment with the neurologist lady. It was at 1 o'clock, it was all i could do to make it the 7 or so blocks in the hour i'd permitted. I worked my ass off just to get there in time and then like usual, i waited. Then they put me in one of her exam rooms and i waited some more. I waited for hours. Every time i stuck my head out to make sure i hadn't been forgotten, they'd usher me back in with the same promise she'd be in shortly. 

Finally, 4 hours after my appointment was scheduled, she came in to see me long enough for me to explain i couldn't stay on the sidewalk and i was afraid of being hit by a semi. She asked, "are you having any seizures?" 
"Not big ones", i replied. 
She gave a self-satisfied "mm-hmm." Then she excused herself from the room saying she needed to take an important phone call. So again, i waited. 

I had to call a professor to reschedule a make-up-exam (holy shit biscuit). I was frustrated and furious. I scribbled a note with questions, waited some more. I peeked my head out again, saw her office was empty and learned from her receptionist that she was in with her next patient. So that's when i left her office for good. 

I found later that her clinician's notes claimed the day she had me arrested i had eloped (left against medical advice. I'm not even sure that term applies if you haven't been admitted.) The day i left during my last appointment she claimed i had disappeared and they couldn't find me(!) How infuriating. 

I was really concerned about the bash to my credibility.  Fortunately, though, i was since able to get a referral to a specialist in Spokane who's phenomenal (and knew all about this neurologist's reputation). Also, a look into her online ratings revealed a bunch of other dissatisfied patients. As much as i hate to know i'm not the only one, it was validating to know there were others out there.

The corollary to this story is if you have hard-to-manage epilepsy, see a seizure specialist. Also, if you're in medicine, become an epileptologist. We really, really need you (especially if the world doesn't end next month after all).


  1. I am horrified that you have to go though this shit. Why do these people go into healthcare? I admire that they are very intelligent but the place for them is doing research.

    Keep us posted on your new doctor. xo

    1. Ha funny, Hi Birdie! I think i was over at your page while you were over here at mine. Thanks for making it through the rant. You're a tenacious bird for sure. I appreciate you.

  2. I'd like to say that this surprises me, but you just know that it doesn't. While I read this, I was thinking what a great person you'd be doing the work that I've been doing over the last seven or so years -- working to improved the treatment of children with special healthcare needs, particularly epilepsy. The shortage of good epileptologists is drastic in this country -- we need to get into medical schools and persuade these people to specialize.

  3. Shudder. When you are ill, esp. chronically ill, it is one of the most awful realisations to find out that some (at times it feels like all) of the experts are just shitty careless faulty individuals who get away with their stuff, mostly because of wearing a white coat and the framed creds on their wall.
    Glad you got away from this creep. Good luck with moving. Sometimes a change is a good as a rest, they say.

  4. Shitty doctors kill people. They don't just make them unhappy or pissed off. They KILL them. Because they don't know what the fuck they're doing, don't care to educate themselves properly, don't listen to their patients, etc.
    As you know.
    I can't even begin to understand what it is you go through. But dammit, girl! You deserve a doctor who at least fucking listens to you. Thank god this woman is retiring. Thank god you have an appointment with someone else.


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