Music's Like a Snuggie for Your Soul

MUSIC'S LIKE A SNUGGIE FOR YOUR SOUL

Thursday, November 29, 2012

Mumford and Emmylou do Simon and G-Funk

Did y'all catch this on the TV? A pretty incredible duo if you ask me:

The Axelrod Family and more about AEDs

After my post yesterday, (basically vilifying anticonvulsant drugs), i ran across this article about David Axelrod and his family (posted in it's entirety below). I'd known about the Axelrods and their daughter, but i hadn't picked up on the part about their finding a medication after 18 years of trial and error (and thousands of seizures). Dudes, i've only been at it a little more than ten.

So there's always hope i guess, as exasperating as the search can be. I haven't even tried every drug out there yet. 

I suppose i should've qualified my recent me-odio-pharmaceuticals post with the fact that i'd just learned from my primary care doc that my BUN and creatinine levels are elevated to the point of concern (now that i've been in somewhat of a groove on Vimpat and lamotrigine). Sooo, in lieu of hitting up my sister for one of her kidneys, i'll prolly be switching medications soon. 

Gah, it's all i can do not to be a nervous wreck about it though. To the point where kidney failure almost sounds preferable. (I know it isn't, but my fear is legitimately irrational, if that makes sense.) So, i'll make the trek to the epilepsy specialist and we'll probably give Depakote a go (so i can equitably dole out insult to other organ systems- sorry, liver!) Fortunately, i'm neither fit for, nor planning on starting my own family, so the teratogenic nature of Depakote is not of concern to me.

For shits and giggles here's a list of the described side-effects of Depakote (found here):
The most common side effect reported in patients taking Depakote is shakiness, or tremors, (ha!) with 57 percent of patients reporting this side effect. Nausea was also reported in almost half of the patients taking Depakote in the clinical trials. Vomiting was reported in a smaller percentage of people, up to 27 percent. Headaches and drowsiness were reported in about 30 percent of people taking Depakote in the drug studies, while weakness and dizziness were reported in about 25 of patients taking Depakote.
Other side effects that were considered "common" in the Depakote clinical double-blind trials occurred in anywhere from 5 percent to 25 percent of patients taking Depakote. These side effects included:
    • Loss of hair
    • Stomach or abdominal pain
    • Weight gain
    • Weight loss
    • Constipation
    • Diarrhea
    • Fever and other flu-like symptoms
    • Insomnia
    • Heartburn
    • Tinnitus, or ringing in the ears
    • Mood swings and/or nervousness
    • Higher susceptibility to certain types of infections
    • Blurred or double vision
    • Back pain
    • Problems with muscle coordination
    • Swelling in the extremities
    • Memory loss
    • Change in appetite (increase or decrease)
    • Involuntary eye movements
 Rare and Serious Side Effects
There are some serious side effects of Depakote that are rare, but require medical attention if they occur. These serious side effects include:
    • Depression
    • Having thoughts of suicide
    • Liver damage
    • Pancreatitis
    • Seizures
    • A decrease in body temperature, or hypothermia
    • Severe bruising
    • Bruising easily
    • Unexplained bleeding
    • Allergic reaction

So without further complaining, here's the article:
The Boston Globe

By Bella English

Axelrods focus on strategizing against epilepsy


David and Susan Axelrod and their daughter, Lauren, who was afflicted with epilepsy from infancy into adolescence before a medication was found to treat the seizures.
David and Susan Axelrod and their daughter, Lauren, who was afflicted with epilepsy from infancy into adolescence before a medication was found to treat the seizures.

David Axelrod, President Obama’s chief political strategist, and his wife, Susan, will be in Boston on Wednesday to cochair a fund-raiser for CURE, Citizens United for Research in Epilepsy. Susan cofounded the nonprofit in 1998, because their daughter, Lauren, was left developmentally disabled by epileptic seizures. The event is cochaired by Anne Finucane, global strategy and marketing officer at Bank of America, and her husband, Mike Barnicle; their daughter has epilepsy.

Q. Tell me about Lauren’s journey with epilepsy.

Susan: Lauren is 31 now. When she was 7 months old, she had her first seizure, of thousands. I had no idea what epilepsy was, how a totally healthy baby can be put to bed one night, and then have her life permanently changed. We went through more than 20 different drugs, brain surgery, brain stimulation, special diets, none of them successful. One of the miracles was that at age 18, she responded to a new medication and has been seizure-free since.

David: It’s important to note that she functions like an early adolescent. But we’re lucky. Many of the friends we’ve met have lost their children; 50,000 people a year die from epilepsy.

Q. How was CURE started?

David: Susan and two other moms started this at the kitchen table. And now it funds research all over the world.

Q. David went on “Morning Joe” on MSNBC and promised to shave off his 40-year-old mustache live on TV if you can raise $1 million for CURE by the end of November. Really?

David: It followed from a bet I made with Joe [Scarborough] before the election [that Axelrod would cut his mustache on TV if Obama lost Michigan, Minnesota, or Pennsylvania]. I won it, and it called for Joe to grow a mustache. In exchange for letting him out of his obligation, we launched this Slash the ’Stache campaign to raise $1 milllion, with the first $10,000 donated by him.

Q. How much have you raised?

David: About $600,000 so far.

Q. Susan, you have never seen your husband without a mustache. What if you don’t like the way it looks?

Susan: He can always grow it back.

David: This is a risky proposition, but the cause is worth it.

Q. What does CURE do?

Susan: What distinguishes us is that we are exclusively about research. We are headquartered in Chicago but we fund research in nine countries.

David: Part of the problem is that the epilepsy research kept plowing the same ground. It was hard to get cutting-edge ideas funded. I’m absolutely convinced that what started at the kitchen table will lead to a profound new understanding of and approaches to epilepsy.

Q. Is the federal government doing enough?

David: I think we should be doing more, and more medical research generally. This was an issue in the last [presidential] campaign, and I believe deeply in that. What we need to do is make sure the National Institutes of Health are presented with promising new approaches that they’re willing to invest in. CURE is an incubator for those ideas.

Q. What is the incidence rate of epilepsy?

Susan: The Insitute of Medicine says 1 in 26 Americans will develop epilepsy. There’s a growing number of senior citizens, due to brain tumors and stroke. There are also head injuries, including a good number of our veterans, who develop post-traumatic epilepsy.

Q. David, you have described epilepsy as “terrorism of the brain.” Why?

David: Because you never know when a seizure is going to strike. It can hit anytime, any place. To me, terrorism is fear of the unknown attack.

Q. How is Lauren doing today?

David: She lives in a place for people with developmental disabilities. She’s got jobs, she’s got activities and lots of friends. She’s made incredible progress. We’re grateful, but we’re still aware that every one of those days is a gift.

Q. You’ve been a senior White House adviser and campaign strategist for President Obama. What do you do next?

David: Now I’m director of the Institute of Politics at the University of Chicago, half time. I’ll be writing and speaking the other half, and kibbitzing with the president when he asks for it.

Q. Do you have a message for Republicans now that the election is over?

David: One thing about having a child dealing with something like epilepsy, it does remind you there are bigger things even than politics. There are challenges that unite us as human beings. My message is let’s try to work together to solve those things that face us all.

Wednesday, November 28, 2012

A Ted Talk Worth Watching

"It wasn't until I let go of the life I thought I should have, that I was able to embrace the life that was waiting for me."
-Janine Shepherd
I loved this Ted talk of hers:





*** 

"When you let go of what you are, you become what you might be."
-Lao-Tzu

Anticonvulsants, Serpents & Insanity


Don't worry, I won't be quitting any day jobs (ha) to pursue a career in photoshop or poetry any time soon. Mine tends to be all sorts of emo, and sophomoric, but i enjoy creative writing heaptons, every now and then i can't help but try my hand at it. Suggestions are welcome.

Anticonvulsant Serpents (Title pending?)

The bottle shakes. Rattles.
Snakes behold.
No.  
Just tablets, silly girl.
From the good physician. Who knows things:
Names, doses, titrations, chiralities, medications and clinical theories.
Nevermind the sensation of capsules, 
chalky pills sliding past lips, down throats.
The side effects.
The feeling your boat is unmoored and the world is turbulent, distant, blurry, churning, bewildering, mess.
No Truth in those tablets. 
Yellow, white, pink, blue, green. 
(Weren't those colors safe once?) 
No panacea for me. For lots of us.
No divinely-inspired commandments in those tablets. 
No trace of God or Moses even. 
Only daunting lists and warnings:
Diplopia (blurred vision), ataxia, nausea, dizziness to the point of falling, pharyngitis, tremor, headache, somnolence, rash, insomnia, gum hyperplasia, facial widening, infections, anxiety, suicidal ideations, mania, depression, irritability, aggressiveness, nystagmus, confusion, weight gain, kidney failure, weight loss, hyponatremia, anemia, vision loss, liver damage, diarrhea, death, vomiting, kidney stones, body hair, oligohidrosis, glaucoma, increased seizures, am I forgetting some? 
Serpents, vipers. 
Complicit in the plight of Eden. 
The fall from Grace. 
Vexation, strife, 
strangled promises, 
dashed hopes. 
Medicinal. Venomous. 
Deadened everything except the writhing, agony, worry, anguish, fear, affliction, seizures, feeling wasted, that drowning sensation, the notion of slipping, drifting away, 
of going fucking insane, 
of being a victim. 
Domestic violence. 
You and your brain. 
Till death do you part.
In a house full of serpents.
Overstaying their welcome.
Pharmaceutical dependence
Can't live without them.
No offense to actual snakes out there,
Who are far more charming than the average, conventional, piece-of-shit, anti-epileptic drug. 

Perhaps i'm uncommonly jaded. 
And a complainer.

Tuesday, November 27, 2012

A Little Something to Brighten Your Tuesday

Sunday Drive Home (Photo-loaded)

Whitebird Idaho, site of the battle of Whitebird Canyon (Chief Joseph) 1877



On Sunday, i joined a convoy of Thanksgiving Weekend pilgrimage-ers and meandered and weaved our way like a needles through the quilt of Idaho mountains and farmland and countrysides. For us it seemed like a lot of traffic, but it was probably sparse compared to most places. 

I hooked a ride over the internet from a kid i'd never met before. It's chancey; it's a pretty long drive so if you end up with a dud, it could be a miserable 5-6 hours. 

My ride was a scrawny, pale, protestant-meets-punk-looking dude from Star, Idaho which is a rural, conservative farm town not known for it's surfeit of scholars and worldly thinkers. He sported a Yankee ball cap and a rudraksha bead bracelet; I didn't really know what to expect. 

It turns out he's a sociology major looking into a job in disability advocacy. He works at a women's center.(!) He was a fantastic conversationalist. We had great time shooting the shit about everything from politics, family dynamics, psychedelics, music, the Apolcalypse, beer, literature, vans, pets, religion, post-college plans and hunting. 

We were treated to an awesome sunset that seemed to go on and on. Some low-hanging clouds looked close enough if only i could Go-Go-Gadget Gumby my arm out the window and snag a clump of spun sugar right out of the cotton candy-pickin' sky.











 Sorry if it looks like the same photo over and over again. I couldn't decide. Decision making no es mi cosa favorita. Overandout. Love from Idaho.

Sunday, November 25, 2012

Jofus

Jofus
Oh, how i missed this boy, my broha. It had been more than a year since i'd seen him. He's been studying in China which seems inconceivably far to me. My brother's an amazing guy. I'm so proud of the stellar young man he's become. The kid is as adept in the wilderness as he is in a gimungous, sprawling metropolis. He's sensitive, emotionally intelligent, yet a total stud-muffin.

I'll never forget one February in '08, days after i'd been dumped on Valentine's via text message by a guy i'd dated for more than a year. I was totally immobilized by the affront to my heart and subsequent derailing of my emotional roller coaster. He was the first man i'd fallen for. I was crushed. sunk. undone. unable to peel myself up, i was glued in tears and shock and sorrow to the shower floor. It was hours, days maybe, i sobbed in a ball pressed against the cold, hard, tiles. I'm a crybaby. It was rough.

My family finally convinced me to go out to dinner. I managed to scoot my ghoulish self, dazed, oozing, scabby, gaping heart wound and all, out the door and into the car with the rest of the clan. 

At the time my little brother was all of 15 or 16. I'm not sure how the topic of the break-up was introduced. I think my dad (step-dad) was conducting a well-intentioned check-in. I told him i felt better, but still pretty turdish. He said, "Well, at least you can write some more bad poetry." 

"Thanks" i murmered, mostly dumbfounded. Before long, it lead into more discussion about my having been dumped. My step-dad commented, "You were too easy." (Which i wasn't; i'd resisted months of daily romantic appeals from a guy i'd been good friends with and attracted to for years.)

Anyhow, i'm not sure if my face betrayed it, but my already fragile spirit was disintegrating on the spot, ready to shatter and fly off like the seeds of a dandelion into some other day and place and time. My brother, in uncharacteristic force said, "Dad, stop talking." 

He came to my rescue. I'll never forget it. It's one of only two times i ever heard him stand up to his father. He was the kind of kid you never had to discipline; one stern look or harsh tone and he was rendered teary-eyed and cowering. He's such a sweetheart. 

***

It was so good to see him. I'll be damned if he didn't snag me up out of a small, internal moment of emotional distress again during this last visit. I'm sure it was a product of my having resisted just about every photo opportunity i'd ever encountered, but my parents were taking pictures of my brother and sister in the kitchen over Thanksgiving break, and never implored me to join them for a snapshot.

On any other day i'd be relieved at the omission, but in the face of the change brought about by our mom and their dad's separation, i was hyper-sensitive. Major transitions tend to breed worst-case-scenario-ing, it seems. As such, i was dreading any rift or division between us siblings. I freaking love them. My parents had put their cameras away when my brother said, "Mom, take one of the three of us." 

Oh, Jofus. Oh my heart. I knew right then, it was all gonna be okay. We have each other. It's kosher. Divorce is a boat-rocker, but we're braving it out together, us brothers and sisters, by holding each other closer.



Mom and me

Naked, Drunk? Hay-Bailer Man


Thanks to my sister for bringing this to my attention. Love to y'all from Idaho. And i'm sorry you might not appreciate this as much as i did. At least it's only 58 seconds.

Kamiak Butte


One thing about playing women's hockey, is apparently, your sexual orientation becomes open to investigation. As we crammed around restaurant tables scooted together to accommodate the lot of us this last weekend, one of the new teammates started quizzing everyone. More than one couple had both members represented on our roster. They're out and it's great. Fortunately these days, even in Ideeho, people my age are pretty tolerant and accepting. Halleluhjah and amen. Long live love and compassion.

I'm so grateful. Every ounce of me rejoices in the trend towards tolerance and justice in this regard. I'm proud of the non-traditional couples out there who have bravely recognized their love for one another despite potential condemnation, ridicule and even physical violence. They are amazing.


Eventually the query had snaked it's way around the table and landed in my lap. I claimed 70% not-straight on account that statistically, identical twins have a 50-70% concordance with sexual preference. My sister realized guys weren't her cup of tea and she's never been happier, more confident and comfortable in her own skin. 


Me? I don't know. I'll admit it. Men and women both have broken my heart. I came out to my dad Thanksgiving '06 (a little gay-vee with our turkey and mashed potatoes). He's an awesome, supportive, loving, and fairly-progressive dude. I'm sure he wasn't shocked; we were always tom boys. It wasn't really a big deal, we're so fortunate. He's been great. I've dated guys since then, though, and he half-jokingly urges pick a team!

Most of the time it's a moot point. I'm single and i'm not looking to change that any time soon. I'm way difficult. We'll just keep it at that. 



So, anyhow, i just tag along with my sister and her girlfriend (our roommate). Even as they celebrate their 2 year anniversary on a hike to Kamiak Butte, a little hill looming in the distance from our little town, with a nice loop trail and vistas of the stunning Palouse.


My twin sister, Nif, with Mollie, a dog i've been
walking every day for a few bucks.

[Aside] Mollie got into cockle burs so badly the other day that her tail was velcro-ed to the back of her legs. It took hours to get those suckers out of her generous, fluffy coat. Good thing she's such a sweet and patient girl. 
6 boots and 16 paws hit the trail with gusto.



The beautiful Palouse from Kamiak Butte

I never did succeed in capturing a photo of the whole bunch.
But i did get a pretty good one of the three of em. My family is so cute.




Wednesday, November 21, 2012

Vandals, Hockey and Lucky Buddha Beer

Idaho Vandals
Wenatchee Hot Autumn Ice Champions
(I'm green helmet, my sister is maroon)
This weekend was a riot. 2 days, 10 ladies (girls/women what have you), one hotel, 6 dogs (Thank you, Travelodge.), 8 hockey games and well, maybe a few jello shots. This picture was taken right before we were awarded the championship trophy. I didn't get a picture of it, i guess, but you'll just have to trust me, since it really matters not.

I'll pitifully admit, though, there have been times over the last few years where ice hockey was one of the few extra-curriculars that did matter to me. Other things may have been higher on my list of priorities, but in terms of what i enjoy most and cared to devote the most energy towards- hockey, definitely.

I'm an addict. I love the speed. When you connect with a teammate it's fluid, whiz, snap, blam, swoosh, ka-ching in rapid succession. Fun meets finesse and intensity. Plus, the sport is sprint interval training in sheep's clothing. Well, bulky pads and helmets, but you know what i mean. Really, the rink is an icy stage for a bunch of electrified meat bags with skates and sticks, chasing a hunk of rubber around, but i'm okay with that. It's a blast. 

The camaraderie and community at our ice rink is first class. We have teachers, cops, doctors, students, kids, moms, engineers, bar tenders and old fogies that play. It's a non-check league, so it's less goony than the hockey you see on TV. It's surprisingly low impact. I know a lot of skaters who can no longer run. My sister, for one, would go crazy if she didn't have hockey during the snow mounds-in-the-bike-lanes season. 


Lucky Buddha beer- 2 hat tricks
I didn't sample any jello shots this tourney (mostly because i don't drink much and also because somebody had the terrible idea of making them with Everclear), but i did indulge in one of these beers i found for $1.89 at a nearby store. I highly recommend this light, tasty, Australian-brewed lager. I hate to endorse non-local purchases, but it's fun, and delicious, and dare-i-say may be worth making the exception if you see it around

I'm not saying you're gonna score two hat tricks and a bundle of goals if you drink it, but preliminary evidence suggests that you could. 

It was amazing feeling so good again. My ability to be successful on the ice is so positively correlated with more freedom from seizures and side-effects; it's frustratingly apparent when things are off, which tends to be more often during the winter months. Quick reflexes and  bursts of energy are diminished if not depleted entirely in battling seizures. Life is diminished battling seizures. And they're all quintessential to the game of hockey. 



It was beyond satisfying and enjoyable playing on a line with my sister and slinging the puck into the other team's net like the defense was made of Swiss cheese, time and time again. I loved it. We're competitive, it's silly.

I'm still whispering and tip-toeing, but so far it's the best November i can remember. Thanksgiving can be a nightmare on the seizure front. I'm hitching a ride down to my mom's. It's the first holiday since the separation. We'll see how it goes. If i survive, perhaps i'll take a minute to recall some of the holiday disasters my family's endured. Does your family have those? I reckon we all probably do. 

I'm grateful for all of you here and for all you share and for this community of caring and learning and resonance. I don't deserve such a platform or any sort of readership, but i sure as hell appreciate it. Have a safe and lovely week. Whether you're celebrating Turkey day or not, i sure hope you find yourself well-fed and surrounded by friends and family, and maybe a glass of wine or a Lucky Buddha beer. Also, if you find yourself in the unfortunate situation of being surrounded by jello shots, i sure hope, Dear Lord, they are not made with Everclear. 

Cheers! 

Friday, November 16, 2012

Bela Fleck and Brandi Carlile for your listening pleasure. We're headed for a weekend of hockey in Wenatchee. It's an all-women's tournament we hele to every year. I'm still in denial about winter, but i do love me some hockey.  Have a great weekend, all y'alls. Be safe out there.

Pirates?

Image credit: halloweenforum.com
My bloggage may depict a fairly emotionally tumultuous person. Believe it or not, though, i'm pretty mellow, even-keeled, que sera, sera as a sea lion. I don't get riled very often, but i'm tired. Tired of feeling adrift. I'm prolly far enough away from shore to be in the weathered, scurvied, scallywagged stages of it. I'm tired of clinging perilously in the rigging, swinging ropes, perched high in the crows nest waiting, straining for land. Tired of hoping. I'm beaten. I heave along with the whims and pitches of the sea. I'm shipwrecked. Broken. Floating, singing and salty. Wind-whipped. Exposed. I'm churlish, swords and fists, i bark and parrot and cause a ruckus. I'm vulgur. Don't give a shit. Unmoored and boorish. Limping, and leaky and my sails are ripped. Seasick with drifting. Enough. I'm ready to be steady on my own two feet. Firm in my boots without the tossing of greens and blacks and blues. Enough. 
I'm tired of being tough. 

Thursday, November 15, 2012

For Birdie and Ms. Moon

Here is our cat, Polly Bemis, on the couch in her cone of shame.

Dog is on the couch and licking my face; doubly disturbing.
Isn't she the cutest?
Polly and Olive
Okay, so it only loosely satisfies your request for pictures of ourselves on the couch, Birdie. But who could pass up an opportunity to post more pictures of dogs and cats? I, for one, could not. Overandout.

Poetry: A Letter From My Heart to My Brain (Last Nerve)



"Its okay to hang upside-down like a bat,
to swim into the deep end of silence,
to swallow every key so you can’t get out.
It’s okay to hear the ocean calling your fevered name
to say your sorrow is an opera of snakes,
to flirt with sharp and heartless things.
It’s okay to write, I deserve everything,
to bow down to this rotten thing
that understands you, to adore the red
and ugly queen of it, to admire
her calm and steady rowing.
It’s okay to lock yourself in the medicine cabinet,
to drink all the wine, to do what it takes to stay
without staying. Its okay to hate God today
to change his name to yours, to want to ruin all that ruined you.
It’s okay to feel like only a photograph of yourself,
to need a stranger to pull your hair and pin you down,
it’s okay to want your mother as you lie alone in bed.
It’s okay to brick to fuck to flame to church to crush to knife
to rock to rock to rock to rock to rock and rock.
It’s okay to wave good-bye to yourself in the mirror.
To write, I don’t want anything.
It’s okay to despise what you have inherited,
to feel dead in a city of pulses. It’s okay
to be the whale that never comes up for air,
to love best the taste of your own blood."
-Letter from my Heart to my Brain
Rachel McKibbens

Can't Sleep

Artist Franz Van Severdonck
Shh shh
she can't sleep
even tried to count some sheep
gears keep turning
no off button
wander far from fields of mutton
back to landscapes less serene
her brain a scattered time machine

what if, if only
constant gnawing
guilt inside is tearing, clawing
thought she killed that wicked monster
still its prey, some days it  haunts her
big mistakes bad decisions
crimson past like scarred incisions

start again forgive, forgive
perhaps some things she won't outlive
emotional ninny, basket case
spilling tears from place to place
wherever she goes
drip drip drip
from leaky eyelids tears will slip
leaving traces streaky face
and that salty, brakish taste

tomorrow, next year
leave the past
things start spinning sick-bag fast
endless list of things to do
don't let them down
they count on you

hush now, hush now
rest your head
think warm fuzzy thoughts instead
count your many awesome blessings
silence worries, worthless stressing
envision loved ones' precious faces
safe secure in warm embraces

oops she's saddened less consoled
those hands too far away to hold
brother over oceans blue
others might as well be too
not seas between that separate
but failure to communicate

she thinks of friends she misses much
regret and grief in losing touch
thank you cards she needs to write
her mind could go and go all night

ugh exhausted
need some zzz's
fuck off sun, go back down please

what to count now?
ducks ducks geese
upon a lake, a pond of peace
feather pillow floating down
grant her sleep or let her drown
sick of swimming she surrenders
sinks to sleep in silent splendor

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).