Cannabis Cured My Epilepsy - Almost Two Years Seizure Free

It is the only drug that has ever stopped my life-long seizure disorder. I had seizures for almost 40 years. I had my first seizure when I was 4 years old. In May of 2017 I will be two years seizure free.

Cannabis is the only drug I use to prevent seizures.Cannabis is the only drug I use for chronic debilitating nerve pain.Cannabis is the only drug I use to treat Multiple Sclerosis symptoms.

I am a legally registered medical marijuana patient.I am able to pay for the total cost of treatment out-of-pocket.I have experienced no negative physical or psychological side effects.

I love seeing children cured of their disabling diseases by cannabis.I love contributing to the world again.
Keep the sun shining!

*/

<3,
RQ

RX Outreach Rocks!

I am having seizures again. I am still uninsured. I, however, am grateful for what I do have and today what I have is 90 more days of medication which cost me $50. 

#rxswag 

Our New American Health Care System

IMPORTANT: Even though it is a PAIN to navigate the new federal healthcare system - having health insurance will change my life - it will save my life. 

I am an American woman living with uncontrolled seizures. I have Epilepsy and I am currently uninsurable. 

My life will change in January. Insurance will bring luxuries to my life including proper medical treatment, MRI and diagnostic tests and the ability to take life saving medication without fear of running out of prescriptions. It is going to be a beautiful brand new world for me. One day soon I will not live in fear of dying because I cannot access proper care; I will struggle, I will fight but I will live.

FYI: November is National Epilepsy Awareness month in the United States.

#aca #gopurple #epilepsy #ofa #obamacare

------------------

Today you get to read my email response to a question floating around at work about healthcare.gov and our new American health care system. Yes, we get to discuss things like this at my job - pretty cool place. 

In response to those angered by the healthcare.gov website:

I liked this Reddit "Explain To Me Like I am Five" counterpoint to those who feel that the new system, specifically healthcare.gov, is a failure:

http://www.reddit.com/r/explainlikeimfive/comments/1owop4/eli5_how_did_healthcaregov_cost_634000000_that/ccwhsmv

However, even with government inefficiencies and bureaucracy calculated in -  I don't personally get it. We have a $100 Million Website linked to a $643 Million System that does not work. This must be fixed!

I am uninsured and live with Epilepsy - so of course I started the healthcare sign-up process on day one. My state requires using the federally generated healthcare.gov process. (Online sign up results will vary based on whether your state sets up its own service or not.) Most states use the federal system.

Federal system - for the first 30 days the system was unusable. It would not populate form fields. It would not save most information to the database. It would not recall information that it had saved.  

It took weeks for me to get a login to work. I don't mean it took weeks for me to fill out the application and verify my identity. No. It took weeks to just get the username/password to work. 

The system is still down more than it is up - I was on there Tuesday of last week. Too much traffic (at 2 AM?) - could not log in.  I try to log in a few times every week.

Identity verification process is broken for most applicants. it is better to call Experian and Healthcare.gov on the phone. Phone reps from both companies are excellent - great customer service. (Kudos: https://twitter.com/seizethediary/status/393877888132345858)

I am still waiting for my identity verification to process - the database "backlog" needs to be remedied - so when I (eventually) log in at healthcare.gov the database has my verification info on file. Once the database is fixed I should be able to choose a healthcare plan.

*/

RQ

Absence on the Extraterrestrial Highway

Rachel, NV - Extraterrestrial Highway - Area 51

I had an absence seizure last Friday, October 11th, at the Black Mailbox on the Extraterrestrial Highway near Rachel, Nevada. The Black Mailbox is famous for being near the front entrance roadway of Area 51. It is a spot where many tourists gather to look for UFOs.

I was not abducted by aliens. 

I was, however, momentarily abducted by my brain.  

I had just been handed a camera from a German couple who were on their anniversary. I offered to take their picture at the Black Mailbox.

And then I was on the ground. Fuc...k. Confusion; the sting of a twisted ankle and scraped knee. Oh, good, no broken cameras. 

I handed the German tourists' camera off to someone else.

Give me a minute.

Ankle. Twisted. Need to dust the dirt off of my clothes.

Are you ok? Are you ok?

Ok.

To an outside observer it appeared as though I had tripped over something. A small rock perhaps? I didn't trip though. Had I tripped my body's instinct would had been to brace for impact, for my hands to reach out. I was standing and then I was on the ground. No in between. Standing. Ground. 

Five minutes later I was fine - twisted, dusty and bruised but fine.

I have been fine since. 

This is day five without a seizure. Five whole days. Five. 

The prior week I had Simple and Complex seizures on Friday, Saturday, Sunday and Tuesday. Maybe the medicine is working. 

Maybe this is not reality. My body is lying silently on an alien exam table; I am zipping through space and I am dreaming... 

*/
RQ

$9,153.60

Uninsured? Don't qualify for Patient Assistance programs?
 

Ganesh overlooks an auspicious display

$9,153.60* is what my brand name non-generic anti-seizure medication would** cost. This is not a year supply. This is a four month supply. That's $27,460.80 annually. 


Sure, four months of the generic would run $561.72 - that's $1685.16 annually. However, not everyone with epilepsy can take generic forms of their medication. Brains are funny finicky beasts.  

While most patients can safely switch their medications among different formulations of the same antiepileptic medication, the Epilepsy Foundation recommends that consent must be obtained from the individual with epilepsy and their physician before any such substitutions are made – to avoid potentially life-threatening seizures. Too many people have been harmed; some have even died as a result of an unsupervised switch. (Read more...)

- Epilepsy Foundation

I'm ready to live in a world where everyone has access to life saving medical treatment. Are you?



*Keppra 1000 mg 120 tablets based on Costco Pharmacy listed cash price
** I qualify for a Patient Assistance Program

Enter October

I am busy. Busy is good. Busy means that my brain is working. Busy means that my seizures have been sporadic. I have not had a seizure since Sunday. Are you freaking kidding? I kid not. That's almost three days!! This is big time news for my stormy brain. Wootah! Ordering a #1 Brain coffee mug right after this post.

I am excited about the future. I am excited about the possibilities.

Here are a few things that are going my way this week:

• Projects
• Medication
• Relaxation

Projects. Although I sometimes miss working in the "real world", working from home rewards me with interesting projects. I have a number of projects that I am currently working on - creative/technical/nerdy work - primarily paid but also some volunteer charity work. I work with people all over the world from the comfort of my home. Why yes, I do get to wear pajamas to important (phone conference) meetings.

Medication. UCB sent my adjusted refill of Keppra to my doctor. Well, not my current doctor, my old doctor, who is almost 2 hours from where I now live. I have to pick up the medication in person. That's a whole 'nother ball of wax. Breathe. Anyhow, I will have medication for the rest of the year! A small miracle for someone who is uninsured. Checkbox next to "one less thing to stress over". Checked.

Can't afford your AED medication? Have you looked into patient assistance programs? No this is not some clever advertisement hidden in my diary. Seriously, not having reliable access to AED medication has been my BIGGEST stress factor. 

Check out this list from the Epilepsy Foundation: 

http://www.epilepsyfoundation.org/aboutepilepsy/treatment/medications/upload/Patient_Assistance_Programs_March-2013.pdf

I'm going to level with you here, it can be a tremendous pain in the ass and run-around to get doctors to agree to send in the paperwork. You will have to follow-up with everyone. You may have to make multiple in-person nagging appearances - if your seizures are uncontrolled, like me, you may have to bum a ride from a friend.  You will spend hours and hours on hold. You will need to document and track everything. It can be stressful. These medications though, they don't just CHANGE our lives, they SAVE our lives. Be patient. Don't stress. Write in your own diary as you wait, yet again, on hold.

Relaxation. It's cooling off in my part of the world which means that, well, I can't help myself - it's baking season!!! Cooking and baking help me relax. They are simple pleasures. My absence seizures are extremely infrequent and my Simple and Complex Partials generally give me enough warning in advance for me to avoid chopping off a finger, so far anyhow. Sometimes you gotta live a little. I'll let you know if I lose a digit or get an oven brand in honor of the baking gods.

Wishing you a month filled with good cheer.

RQ

Yesterday and Today

ME: I need to lie down.
BF: Just a minute.

I remember the first Grand Mal aka Tonic Clonic seizure I ever had in public. It was summer, during a short vacation. I was eighteen years old running wild and free with friends. We had danced all night at a club called The Fine Line. It was afternoon and we were wandering through thrift shops and record stores. It was over 100 F, a typical blazing hot Tucson afternoon.

We were in a record store called Zia Record Exchange. My then boyfriend was a huge Beatles fan. Huge. On the record store wall hung his Holy Grail. *cue angels singing* It was the Beatles' album Yesterday and Today, THE one with the controversial "butcher" album cover.

He had to have it. It would change his life. He knew it.

I had to have a seizure. It would change my life. I didn't know it.

I was not feeling well. My mouth had gone metallic, beads of sweat were forming on my upper lip, I began to wonder if I had caught a cold. Everything felt off; surreal.

ME: I need to lie down.
BF: Just a minute.
ME: Right now. On the floor.
BF: Hold on, don't lay on the floor. Almost done.
We were next in line at the cashier. Maybe I could hold on just a little bit longer. Maybe I...
ME: I ca...ah...

I woke up staring at an openwork industrial ceiling and bright fluorescent lights. Where was I? How did I get on the...ahhhhh the back of my head..I could feel the bump rising on the back of my skull. Was there blood? I wasn't sure if my head was bleeding. I was lying on a grey concrete floor. Sounds began to rush in. People. Everywhere. People. Crowding around me. 

My boyfriend was pushing through the crowd. He reached down to grab my hand. He was red-faced with embarrassment.

BF: She's fine. Back up. She can get up.
VOICES IN CROWD: *Gasp!* Ohhhh. *Mumbles.* *Shuffling*
CASHIER: Would you like us to call an ambulance? Sir?
BF: No. She's fine. It's fine.

I shakily rose to my feet. The crowd dissipated. Everyone pretended that nothing had ever happened. The cashier shuffled his feet and looked at the floor. He would not make eye contact with me. Nobody would. My boyfriend hugged his brown paper bag containing Yesterday and Today, dropped his head and yanked me by the arm out the front door.

BF: How embarrassing  You were flopping around like a fish. Never do that again.

What?

*/
RQ
www.seizethediary.com

Dancing to Bread Pudding

Hey Diary, it's me, RQ. I'm just checking in real quick. It's been 40 hours since I started my increased dosage of Keppra. It is 8:30 AM and I am making bread pudding and blasting music in my office. I have work to do today.

If not for a kind soul named Annie, I would be doing none of this today. It is more likely that I would be curled up on the floor somewhere in the house contorted and making weird crying sounds while snot drips down my face.  That was typical. That was my new normal.

Today though, oh, hold up, the bread pudding is done, BRB...

Today I am fully functioning. I have paid projects to work on all day. I can do that because somebody cared, because somebody helped.

I do not want to start crying again about how happy I am to feel alive.

We need to care more about others. Caring changes lives. Caring saves lives.

Pay it forward today. Do something simple and kind for someone today because we are all in this together.

Crank it Up

Meds increased. Feeling a bit Keppra zombified but no seizures for 24 hours! Productive day one.
Yessssss!!!!

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. 

Masquerade

The painted faces on the street
caricatures of long ago
oh they were young and oh so sweet
down beyond the boulevard
knock on doors and empty halls
and still sometimes remember
the masquerade's forever

Berlin - Masquerade

I love this time of year, the last summer days leading to Fall. I spent Saturday morning wandering through a Halloween store looking at cheap costumes and tacky lawn displays. I went to a concert on Saturday night. I spent Sunday afternoon making raspberry lemon muffins.

I had two good days this weekend. I only added two time stamps to my Google calendar. One was Saturday when it appears that I  mentally "checked out"  in Safeway. Maybe I was day-dreaming, maybe it was an absence seizure - since there was no pre-ictal agony or pain. Odd. Generally I have some sort of my-head-is-fucking-murdering-me aura before anything hits me. I would not had noticed if not for my boyfriend asking what took me so long (it took me half an hour to grab one item and meet him on the other side of the store? What?) Two was Sunday afternoon when the typical coldness crept over my body and chilled my limbs. I went to sleep for two hours. I felt fine after.

Otherwise my weekend was magical. My slumber filled with surreal yet non-threatening dreams, my waking hours filled with conversation. I want to tell a million stories when my brain is working - I want to get everything out - before the cognitive clouds gather again and the electrical brain storms return. Brain monsoons.

I was thinking about the duality of my summer childhood days.

My maternal grandparents were prim and proper. Maternal summer days were filled with pretty dresses, crisp linen, books and embroidery work. I baked peach pies with my maternal grandmother and gathered strawberries from the garden. I wore white satin gloves and had tea parties with my grandmother. My well-dressed grandfather would take me on weekend day-trips to prospect for opals and other gems and minerals.

My summer childhood days were chaste.

Sometimes when I have a seizure - it is not fear that I feel - instead I feel TIME, a very specific moment of time. Sometimes I feel an exact moment of time I spent with my maternal grandparents - I feel the exact color, emotion, warmth, and smell of the moment - an exact moment perfectly preserved, crystallized and encapsulated - I am emotionally overwhelmed by the nostalgia. Afterwards it is impossible for me to speak about it without a face full of tears and a lump in my throat. The moment - it is heightened -hyper-real. Sometimes seizures are like time machines.

My paternal grandparents were drunk and disorderly. Paternal summer days were filled with dirty hair, greasy burgers, books and bar patrons. I ran wild in the desert as my maternal grandmother tended bar. My t-shirt and jeans wearing grandfather would stop to buy me a "pop" at a local bar on our way home from grocery shopping. I didn't realize as a child that it was because he needed another drink - he couldn't wait to get home to his own bar - he had to have another drink right now.

I have not had seizure related memories of my paternal grandparents - instead my memories are "real" (sometimes seizures make you question what is "real".). My memories are sometimes happy and sometimes brutal - spending early mornings with my cousin's in my grandparents bar - we shot pool and played the jukebox while our grandparents slept - we drank far too many high ball glasses of soda pop from the [soda] [tonic][Coke][7up] button-triggered bar pour gun. We rode dirt bikes, traded pocket knives, shot off firecrackers and ate too much candy. We explored abandoned yet perfectly intact houses - pretending they were our own.  We ran under foot among drunks and floozies. We cried when our grandfather was murdered.

My summer childhood days were vulgar.

the reeling figures pass on by
like ghosts in some forgotten play
beneath the black and empty sky
music plays and figures dance
with partners chosen by chance
and still some times remember
the masquerade's forever

Berlin - Masquerade 

Friggatriskaidekaphobia

Happy Friday the 13th!

Some of my fondest memories are from Friday the 13ths. The day we moved into a new house. The day my brother wrote FUCK in the neighbors wet driveway cement. The day my local Payless Shoes store manager called ME on the phone one boring afternoon in 1981 to tell me I had won FREE shoes for my amazing coloring contest entry! Yessss! I rocked that clown coloring page. I tossed and turned all night thinking about my shoe prize.

Frig. I did not fall asleep until 3:00 AM last night.  Same story. Different day. I take Keppra in the morning and six or so hours later I begin to feel the stab of pain in my right temporal lobe; I feel the cold slowly crawl down my limbs. I wait at least eight hours until I take the next dose. On a good day I will only have multiple Simple Partial Seizures (SPS) between doses. I do not keep track of every SPS but try to track every Complex Partial seizure.

Suck it September.

September has not been a good month. I have had Complex Partial Seizures and Tonic Seizures almost every day. Complex Partial Seizures are freaky because I do not remember moments of time, I feel them creep up and garble my ability to communicate - sometimes I become highly irritable and communicate irrationally - sometimes I just stare bug-eyed into space and become non-responsive. Tonic seizures are weird because although I maintain conscious ability my body becomes contorted. I like to imagine that I curl up coolfully though - striking Count Orlok's Nosferatu poses like good ol' Max Schreck circa 1922.

*/

Read more from RQ at www.seizethediary.com