Well Fuck, I Have Multiple Sclerosis

And that's really all I have to say about it right now.

Multiple Sclerosis- The Lumbar Puncture

"I hope you don't have MS. That would be TERRIBLE."

That's what the nurse said to me before handing me a Coca Cola. I was lying down completely flat in a hospital bed. Let me be honest with you, I cringed. I cringed at what the nurse said. I also cringed because no way in hell would I be able to lie completely flat AND drink a soda.

I wondered if Coke reps had to hard-sell soda to Neurology departments as a cure-all for lumbar puncture headaches.

The lumbar puncture (spinal tap) was a non-event. Thankfully. I've experienced more pain buttoning up jeans I should have stopped wearing five pounds ago.

A man two curtains away from me was yelling, "I can't lie still for an hour! It can't be done! I won't!" The nurse attempted to calm him. "Sir, we haven't done your procedure yet. You don't have to lie still."

The Coke and its bent straw stared at me from a shelf overhead.

I spent an hour reading news on my phone and then I went home.

I got my test results more than a week later. It was after I finished jury duty, or rather was immediately excused from jury duty after having revealed that I have seizures inside of a courtroom filled with people. Man, I've never seen doors open so fast. It was mortifying and magical.

Tempest & Toasters

from notes for December 17, 2014

Antiseizure meds cause depression. Hell, seizures cause depression.

I went to my Neurology appointment on Monday. It's weird because aside from weighing you and taking blood pressure they just talk to you. It's not even like when my old Neurologist would do all the reflex tests from 1940 on me. Not even that.

I saw the Neuro assistant. Her name is Tempest.  Tempest wears skin tight ultra thin cotton bell bottom pants that are covered in swirly designs. Made in India. I could totally see her vag thru the thin cotton. It was weird, a little weirder than the time I found the online topless pics of my yoga instructor.

So, I lost another 10 lbs in a month, my bloodwork is perfect and I still have weird tumors spots on my brain and seizures.

It was suggested that I have a spinal tap to check for Multiple Sclerosis. The lesions on my brain do not suggest MS, my symptoms do not suggest MS. Nobody has suggested MS. Fuck, I've spent almost 30 years having seizures off and on, can we focus on that?

Tempest is timid. I use it to my advantage. I'm not a dick but I do ask her questions.

What is the rationale for a spinal tap? Why now? Why not a spinal MRI?

No, the latest medication prescribed to me is not working - 10+ seizures per day, migraines, insomnia, hives, suicidal thoughts.

My latest medication is discontinued. I'm written scripts for two new. One is adjunct drug for drug I currently take and other is some Valley of the Dolls barbiturate headache medicine.

I'm kinda a dick when we review my latest MRI. No. Wrong. Temporal NOT parietal lobe. Have you ever seen the images or just the one paragraph written report from the Radiologist? The basics are wrong in the report. I don't go into the specifics. I feel cheated. I am not receiving decent medical care.

I don't want a spinal tap from the local hospital. No. Fuck no. I don't say it. I say that I have to think about it.

"We can't cure you."

I know that.

"Have you ever thought about keeping a seizure journal? "

Does she really ask that?

I have calendars, journals, charts, graphs, blogs, apps, etc. which all document my seizures. Doctors rarely want to see any of it.

"It's weird that you have parietal lobe  and not temporal lesions/possible seizure focus," Tempest says.

"No. They're Temporal. The Radiologist continues to make that mistake in his reports. Right NOT left and temporal NOT parietal. If only you saw the images. He missed so many things on MRI but I only have unofficial second opinions."

Tempest leaves the room for 15 minutes to talk to The Doctor. He has weird hair that is half eggplant purple on top and salt and pepper color on bottom. What is with his hair? I always wonder. Tempest returns with referral papers.

"You should go to this institute.  I think they'll still want a spinal tap," Tempest says to me. Gah, MS must be her Taint Cancer; she really wants me to have it.

I Wiki the place I am being referred to:

"...the world's largest neurological disease treatment and research institution, and is consistently ranked as one of the best neurosurgical training centers in the United States."

Fuck. Yes. I've been waiting two years to see a REAL specialist, an actual Epileptoligist.

Remember, I started out uninsured, spent $800 on an office visit with a Neurologist who gave me a six-month prescription for drugs that cost 20k  and which I begged Pharmaceutical companies to donate to me.

I call The Institute and then fax my referral and some med records. I'll have an appointment in a month or so. Maybe.

Here's what a lot of people don't understand - why go to these doctors, take these crazy meds, go through testing?

Because I have to do this. I have to be proactive about protecting my brain. Seizures in brains are like toasters in tubs, they fuck your shit up and can kill you. Or worse yet, seizures can irreparably damage your brain and I'd rather be dead than live in Idiocracy.

I take the risk. I take shitty pills that make me feel shitty because some day some combination of pills MIGHT control my seizures entirely. Eureka! I just want the fuck outta this tub.

I smoke cannabis every day as well. It helps a lot but honestly we need some Weed Science going on because the level of chemicals in the medical marijuana I buy is not optimal for treating seizures; we just don't grow the good shit here yet.

I am hell to live with, especially when I'm having seizure clusters or taking new meds which is most of the time right now. I don't sleep when normal humans sleep, I break down over everything and anything, I'm depressed every time I start a new drug or have a seizure. I think I am going numb. I can't feel my fingertips. Fuck. 

Otherwise, things are going fine.

Numbo Jumbo

Hulk concerned. Not sure if Vimpat or other issue. Brain BAD.

You can stop reading now unless you enjoy reading notes about symptoms. 

Increasing numbness now including face. Extreme migraine (on both sides of head but mainly right) with visual black spots and flashing in right eye. Lack of coordination and balance. Confusion. Mood sucks. Uncontrollable crying. Similar to February 2014 episode.

Spoke to pharmacist while picking up refills - suggested immediate contact with Neurologist. I will receive zero reply from their office (leave message after message) and will have to contact Barrows Monday about referral faxed to them last week.

Next local Neurology appointment is March. Specialist out-of-town Epileptologist hopefully sooner.

Tapering down Vimpat from 400 mg per day to 200 to 0 over next week or two to see if it is an issue. Will continue Keppra at 3000 mg per day, baby aspirin and multivitamin.

Began Harlequin strain of cannabis yesterday (7 or 11% CBD depending on lab from which results were given) which alleviated facial numbness and severe head pain.  No change in arm and finger numbness in right arm thus far.

No use of pain relievers, no sleeping aids, no Klonopin nor Fioricet.

Slept well.

Slight drooping on right side of face which hopefully resolves quickly. Blegh.

Today is improvement from yesterday.

Memory is better today so far.

Paresthesia (Numbness)

Numbness since day two of Vimpat. Now on day 12. Numbness now spreading to include face. Is this normal? 

Other side effects include dizziness, occasional lack of balance, increase in migraines, depression. 

Wait. Why am I taking this?

Contemplating next step to take. 

Second medication tried in past 60 days. 

Medical Marijuana and Epilepsy - How I Stopped Living with a Bullet to The Brain

photo: Neeta Lind

Note: this previously unpublished post was written in August of 2014. Since that time my seizures have returned. I have had two additional AEDs fail. Medical marijuana does not 100% control my Epilepsy but provides me with excellent pain relief without dangerous side effects. 

She did not look at me. She stared at her hands and mumbled into her voice recorder about brain tumors. She reviewed my Radiology results from Cinco de Mayo; I had my second MRIs completed on May 5th. My first brain MRIs were on April Fools' Day. Brain abnormalities! Ha! Wait. Not fooling? Sad trombone sounds.

She said to take an aspirin a day. Seriously. An aspirin. The aspirin was for the chronic transient ischemic attacks. Epilepsy, brain tumors AND mini-strokes? Awesome. An aspirin?

She stared at the top of her own scuffed brown leather shoes while shaking my hand goodbye. "I wish I could give you a magic bullet but I can't."

I smiled. I felt bad for her. She looked sad in her greying labcoat. I wondered if she did her own laundry. Why not send the labcoat to a dry cleaner? Her greying labcoat bothered me.

I wanted to cry but instead I found a new obsession to occupy my time. I spent the following weeks in dark and silence. I read thousands of medical journal articles and dozens of Neurology books. How could I save myself?

Brain surgery? Sure, I could rock a mohawk and a gnarly scar.

Other pharmaceutical drugs? Sure. I was willing to try a fourth (or was it fifth?) new anti-seizure medication.

The new medication my Neurologist prescribed, Topamax, helped at first. It masked the pain of migraines. I did not feel great but I was alive. I continued averaging a dozen seizures per day.

I filled out the paperwork that would allow my body to be donated to Science. It was a grim but comforting action.

My romantic relationship fell apart. I moved back into my own home. Fuck.

On May 26th I smoked medical marijuana for the first time. It was my mother's idea, truth be told. I did not expect it to help me. I expected it to exacerbate my seizures. It was worth trying once though, right?

Within fifteen minutes of smoking medical marijuana every symptom I had disappeared. For the first time in years I felt normal. Hell, I felt great.

These are my shorthand notes from that first day:

5/26/2014 MM1

+ Results. Migraine completely halted in 8 minutes. Muscular rigidity ceased. @15 min: Mental blocks ceased. Paresthesia ceased.

I cried before I went to sleep that night.

I added marijuana to my daily medical regimen. I began smoking once a day at bedtime. I read everything I could find about Epilepsy and medical marijuana.

I had one additional seizure cluster in late May. I had two seizures total in June. All seizures coincided with my known seizure triggers. I was NOT having random seizures. This was a major breakthrough for me, this was progress.

I stopped taking Klonopin nightly. I slept peacefully without it.

Severe side effects from Topamax hijacked my body soon after I began taking the drug. At first it was loss of appetite and taste perversion. Taste perversion is not as sexy as it sounds. Everything tastes terrible, especially everything carbonated. There is Science which explains why carbonic anhydrase inhibitors such as Topamax make things taste terrible but I won't get into that. I lost 20 pounds in May and I could no longer drink beer. It was a small price to pay for migraine relief.

The side effects increased in July. My gums eroded and bled constantly. Anhidrosis kicked in - my body lost the ability to perspire! My body temperature became dangerously high unless I remained in an air conditioned room. Anhidrosis made me claustrophobic; I felt as though my body was vacuum sealed in plastic and I was slowly suffocating.

Breathe.

My Neurologist quit in July without warning. Her voice mail coldly informed me to call elsewhere for care. I booked the next available appointment with a new Neurologist: September 4th.

I began tapering off of Topamax on July 19th. Potential withdrawal effects: seizures and death. Three times a day I smoked a miniscule amount of medical marijuana, just enough to calm my brain.

Three days later a 21 year old actress named Skye McCole Bartusiak died from Epilepsy related complications. Sudden Unexpected Death in Epilepsy (SUDEP) is reality. SUDEP is the number one cause of epilepsy related death in people with pharmaco-resistant epilepsy.

My Epilepsy is pharmaco-resistant. Every time a seizure is triggered in my brain a game of Russian Roulette is played.

Topamax withdrawals are Hell: shooting electrical pains body wide, Alice in Wonderland visual illusions and a torso covered in hives. It took two weeks for the withdrawal symptoms to fade away. My mouth stopped bleeding. My body regained the ability to perspire. Food and drinks tasted normal again.

Despite going through painful drug withdrawals I had zero seizures in July. Zero.

It is August. Zero seizures. I will be alive when my grandson is born next month.

Have I found my magic bullet?

Number of Seizures Per Month - 240 to Zero

May: 240
June: 2
July: 0

#epilepsy #medicalmarijuana #cbd #thc

A Letter - Dear Strong Beautiful Woman (who just so happens to be living with Epilepsy)

(Adapted from a personal email I sent out the other day.)

Dear Strong Beautiful Woman,

Thank you for writing to me the other day. Good to hear from you!

I experience a number of different types of non-convulsive seizures including the type that you mentioned having. I too have fallen down stairs and lost consciousness at the perfect moment, including in front of large crowds. I'm REALLY good at pretending that I must have tripped over nothing and I'm REALLY REALLY good at walking with two badly twisted ankles for long distances. Years of practice!

Normally those types of seizures I have once or twice a year. Although in May I had three of them. Neurologists sometimes lump these in with Complex Partial seizures or label them individually as Atonic seizures.

I have many types of other seizures though and some of them I will have up to 12 times per day. May was a month where I averaged 12 seizures per day. June was much better. I had 5 seizures TOTAL for the entire month.

Why was June so much better for me? Why did I have so many fewer seizures?

I stopped being so hard on myself. I started eliminating stress from my life. If it caused stress and was not absolutely necessary it did not belong in my life.

Some things were easy to delegate or decline.

Other things were not so easy.

Letting go can be painful. I lost a relationship in the process.

My top three daily priorities are to take my medicine on time, take a 30 minute nap and document any seizures.

You might think I spend most of my time at home, being careful, worrying about seizures and brain tumors and the next batch of tests my Neurologist has ordered. I don't. I spend most of my time surrounded by friends and family - laughing, living, going on crazy adventures.


Take care and don't be afraid to fall,

RQ

Uterusless Thoughts about Hobby Lobby

I fell asleep super early last night. Now I'm awake in my dark and quiet house.

I was thinking about this #hobbbylobby case, moreso about medical coverage. I HATE battling with insurance coverage. It's practically a full time job for me. I live with Epilepsy, a brain tumor or two and a mixed bag of other developing brain glitches. None of this is a secret so if you haven't heard about it you just haven't read my posts for very long. I'm fine by the way. How are you?

Anyhow, I was thinking to back when I was having some major gynecological issues. Uterine fibroids, menorrhagia so extreme that I required blood transfusions. I was in my mid 30s.

I already had my kids. My reproductive system was so far gone that I could not have more kids. I was really really sick.

Prior to ultimately having a hysterectomy, my doctor and I tried a number of birth control methods to battle with my extreme medical issues. I wasn't using the birth control as contraceptives - I was using them to battle major medical conditions.

I could not take generic birth control pills for my medical conditions. My options included pharmaceutical prescriptions for contraceptives similar to those that Hobby Lobby just won the right to not cover in their health plans.

I hate to think of women, really really sick women, that for no other reason than the whim of a corporate employer, being told that they cannot have an IUD or Ella to treat their uterine fibroids.

Instead the next options on the Corporate Approved Formulary of Medications Available for Women Because We Say So are GnRH agonists (horrible side effects including "chemical menopause" and bone thinning ) or a hysterectomy.

It is not good Science. It is not good Medicine. What it is is the inhumane treatment of Women.

*/

RQ

Adverse Reactions - Topamax Day 10

Topamax/Topirimate are the tiniest pills pictured here.
Small but powerful. The biggest are Keppra.
The yellow medium sized is Klonopin.
All three are AEDs - anti-seizure medications.
I also take a multivitamin and aspirin daily.
Treatment for nonconvulsive Epilepsy with migraines
with Chronic Trainsient Ischemia
& other brain weirdness (need more studies)

[warning: probably contains foul language]

Everyone addresses Epilepsy in their own way.

You can get down with your bad self (while hopefully not falling down on anything hard or ending up in the ER if you have THAT kind of Epilepsy), wear a different funny Epilepsy t-shirt every day of your life, get a big fat EPILEPSY SUCKS tattoo, make your disease a part of your identity, embrace it, seize it, whatever. But learn some way to cope with what will likely be a long and bumpy ride. There is no magic wand.

This is officially day 10 on my latest Neurologist prescribed "let's try this drug regimen". The newest addition to my antiseizure arsenal is Topamax. I don't get the fancy designer version but the generic "equivalent" Topiramate. It is prescribed primarily for seizures, as well as Migraines, and off label for curbing binge eating and drinking and possibly to make you carry on like a complete brainless airhead (some report that it makes them forgetful, reduces cognitive function, etc.). It's nickname is Dopamax. Oh Emm Effing Gee.

So far, I don't, you know, like, feel, like, totally, feel dumb or anything. Ya know?

I discussed this drug briefly yesterday at the end of my last post. See? Cognitive function still functioning over here.

The most common side effects of TOPAMAX^® include: tingling in arms and legs, loss of appetite, nausea, taste change, diarrhea, weight loss, nervousness, and upper respiratory tract infection. Report any side effect that bothers you or that does not go away. 

So here's the FUN part of these meds - do the benefits outweigh the side effects? OK, then keep taking the medication. You don't magically get a new medication that has zero side effects - there is no such thing. Even those side effects that the label says CONTACT YOUR DOCTOR IMMEDIATELY IF, even some of those - are you willing to tough it out or do you want to pick what is behind door number 3? Are your SURE? Are you really SURE? 

My last drug in the mix which did NOT control my seizures had the odd side effect of making my oral mucosa thin (that's in my mouth, dude) and my mouth would just randomly fill with blood. In line at the grocery store? Blaaahhhhd! Talking to someone? Blaaahhhd! Gotta go, keeping mouth tightly shut while turning into a freaking vampire. I told my Neurologist that it was ok that the stuff left an acrid taste in my mouth for 3 hours regardless of how much water I drank, it was ok that I couldn't fall asleep all night but I couldn't live as 1960s B-movie Count Dracula just for kicks for a drug that did nothing to improve my life.

So far my side effects on Topirimate have included loss of appetite, taste change and weight loss.

Yesssss!!!! 

My only complaint about the loss of appetite and weight loss is going to be if it goes away. Are you kidding me?! I THINK I can figure out a way to ingest more calories and gain weight if it becomes an issue. I recently spent six months on an ultra low carb diet trying to fight the side effects of weight gain from other seizure medications. I was good. I was strict. I never cheated. I ate less than 20 grams of carbs a day every day (A woman following a conventional 1,200 calorie diet would be advised to eat 135 to 195 grams of carbs per day. A slice of bread contains 36 grams of carbs). The scale didn't budge. I tried to convince myself that I was building muscle mass. Haha. At least I wasn't gaining more weight, but damn, Big Pharma, you still owe me minus 30 lbs.

Taste change. This is THE WEIRDEST THING. There is actually a very boring to 99.9% of the world scientific paper that explains the mechanism that causes this to occur with this particular drug. Everything carbonated is now inedible. Too bad I can't drive because y'all would have a designated driver for Microbrewery nights. (Note: somebody remind me to bring a juice box sized wine to that high school reunion desert kegger at the end of June.)

Protip:
Put your pills for the day in a travel sized pill container.
Mine is an old hotel gift shop mini Excedrin bottle. Slap all of the sticky RX labels from your pharmacy
receipts directly on the bottle. Now your name and all of your pills names and dosages are in one portable place.

I haven't had my more common (daily) seizures since I started this new medication. I haven't had a clusterheadache/suicide migraine in 6 days and I have not had a loss of consciousness seizure (which I normally only have twice a year or so) in 4 days. It's not magic but it's a start.


*/RQ

Neurotic Thoughts - Seizures, Tumors and Second Opinions

Seize the Sagittal T1 view of my brain.

[warning: foul language]

It's been a rough ride but I am still here.

I do not have a brain tumor. Repeat. I do not have a brain tumor. I want to establish this before my kids, friends or family read this and freak out. It's not a toomah.

Fifteen days ago I walked into my Neurologist's office. The words "low-grade glioma; right parietal lobe" were spoken into the computer's voice recognition software system. I was never directly addressed about this.

You think I have a brain tumor and you are not going to say anything directly to me about it? I was told to add an aspirin daily, switch a seizure medication and have another MRI in 3 months. I wasn't shown an image of the monster lurking in my skull. Nothing.

And that was it. "See you next month." * awkward handshake*

To be fair, Neurologists are odd creatures. They are not unlike Physicists or Engineers - socially awkward but fascinating nerds. I like them, they are my people, people of Science.

But man, say it to my face, make a completely inappropriate joke, draw a dick on my follow-up appointment card, don't just talk to the computer. :/

A million thoughts jumbled into my already overly active seizure ridden brain. What stage is this tumor at? What's the next step? What do I tell my family? When? Should I? How many years will I have left? Brain surgery? Right parietal? Oh hell no! They don't even shave the COOL mohawk part of your head for that. Lame.

I went home.

An undergrad in Biology really doesn't prepare you for the anxiety that surrounds the possibility of having a brain tumor, you do a bit of  Neurology related overview in A&P, Pathophysiology, Biochem, Genetics - but that's about it. Over the next week I learned enough about Radiological imaging (specifically brain MRIs) to be able to tell the difference between a T1 and T2 coronal Flair, etc. - so I could start asking questions - of anyone, elsewhere, anywhere who knew what the hell they were talking about.

I looked an thousands of normal brain MRIs as a starting point.  I read hundreds of published studies. I dug through case studies of abnormal brain MRIs of people with Epilepsy with seizures like my own. The difference between a normal MRI and an abnormal MRI is not always so simple, sometimes it is subtle, too subtle for an untrained unguided eye. I had 600 personal images to look through and the area of my brain that my Radiology report said was abnormal - well, I could not find an abnormality. I also did not have the 4 years of education it takes to begin to understand how to interpret funny brain pictures.

I uploaded the entirety of my MRIs to a private server on the Internet and learned enough jargon to create a decent presentation which I then shared with a number of people who are highly skilled in interpreting funny brain pictures. I got not only a second opinion but a third, a fourth and a fifth. It was a great relief to see so many people come together and although they disagreed over subtleties they agreed on one primary thing - most importantly that it is highly unlikely that it's a low-grade glioma - IT'S NOT A TUMOR.

I could never find the abnormality I searched desperately for because my Radiology report was interpreted incorrectly. The primary abnormality listed on the report is located in my right temporal lobe NOT my right parietal lobe.This makes a huge difference when dealing with care and treatment options. It also lets me know that my undergrad in Biology was not a complete waste - I still know the difference between my ass and a hole in the ground and my temporal and my parietal lobe; my diagnosing Radiologist, I'm not so sure about - I don't know how many images this person processes a day or the last time this person slept. This is my life and I am my medical advocate.

So, I don't have a brain tumor. During my discussions with my expert panel even further abnormalities in my brain were brought to light that require treatment and further study. The left side of my brain is having mini strokes which domino effect into seizures and that needs to be addressed because bitches be going numb and dropping and shit. Falling on the floor and busting your head, twisting your ankles and having black and blue legs sucks. I want to wear high heels and drive a freaking car already.

I have a good roadmap for directing my medical care. I am not in the dark.

My new medication is working well for controlling the majority of my seizures and migraines but has taken away my beer drinking superpower (EVERYTHING carbonated tastes like salt, bile and Dawn dishwashing detergent, shaken not stirred) but I have gained a new superpower - I am dropping weight like mad and oh my gawd I am going to look sooo good at prom this year.*hairflip*


*/RQ

There IS something in my Right Temporal Lobe

My brain. The white spot the arrow points to is an abnormality in the right temporal lobe which is likely causing temporal lobe seizures. (Axial view mirrored. Pretend you are looking up at a slice of the brain taken with a camera viewpoint from the feet only everything is backwards.)

See? Shit. It's like having my own Big Foot sighting captured on film!

Maybe it doesn't look like much to you, not impressive enough, not big enough, not sexy enough but this story is about me, not you. Go get your own Big Foot.

I still have what may be seizures or a mix of ischemic events and migraines and seizures or who knows, at any rate it's a royal pain in the lobe.

There's other little anamolies lurking about it my brain but for now - get seizures under control, stop migraines, try not to have an aneurysm, spend good times with great people and live like a rockstar.

Do I know my brain or do I know my brain ? Here is a sketch of my headache area I drew on March 7th of this year: 

Note:MRI images are mirrored/backwards from normal view. 

No Music Allowed in the MRI?

April 1st. Going for an MRI. 

If you are having your brain scanned on April Fools I think you should bring the most obnoxious music possible. If nothing if note appears on your MRI, cool, you have your lucky obnoxious music to thank. If something sinister results you can at least blame that evil fucking dubstep. Win. Win. 

Lame. I was told on the phone that I could bring a CD to play. Once I got in the back the tech said "No. Earplugs only. No music."

I don't get results back from my MRI and other testing until the 25th. 

Visual Illusions

What I see during a seizure:

What I should see:

Wait, wait, wait.

Standing in line. 

Visual illusions

Paresthesia

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 

The Glass is Not Half Empty

...it is a million miles away and I am having a seizure. 

Don't Panic

Epilepsy sucks. Being uninsured sucks. 

If you applied under the Affordable Care Act last year, you, like me, may still be uninsured even if you qualify for coverage. If you receive a denial letter this month please read it very carefully, each and every word. 

I know how stressful being uninsured is. I know how much it sucks. I know that you, like me, do not sleep well; you toss and turn all night wondering if you will run out of medication before becoming insured; you dread not being helped in time; you dread dying in your sleep from SUDEP;  you wonder what is really going on in your brain. 

Without insurance, your medical care, like mine, is limited to discounted prescriptions provided by nonprofits and/or manufacturers and rare trips to a clinic or nurse practitioner. You do not have specialists. You do not have access to proper diagnostic testing. You do not have care. 

You are holding on to life by your fingertips in hopes of surviving. 

You do not have the luxury of sitting around and waiting. Life does not stand still and death is less compassionate about your plight than a Physician's Assistant who hasn't slept in three days. 

You live with a serious chronic condition which you realize must be controlled. 

I want you to read any insurance letters carefully. Even if a letter begins with the dreaded DENIED. 

I want you to see the letter I just received. 

"We DENIED your application..."

Panic. Panic! PANIC!!!! 

If this were a Choose Your Own Adventure book would you:

a. Rip up letter and throw in trash. 

b. Hope SUDEP takes you quickly

c. Notice the parenthetical "Continued on the back of this page." 

Don't panic. 

I'm going to go ahead and say it...

THE FUCK?!!

This is NOT an actual denial letter. The state has NOT processed my application in accordance with ACA yet. 

Have you received a similar letter? Tell me about it! Send me a Tweet.  @seizethediary

High fives for FIRST Seizure Free Monthiversary!

Make that 24 Days...

#epilepsyawareness

I Am Alive

I felt something last night. I felt normal. Really normal.

It was my twelfth seizure free day and I felt ALIVE, fully ALIVE. I have missed that feeling more than anything else, that ability to connect, to engage, to live. It came back last night - warm fuzzy feelings and compassion. Love. My brain was processing love.

In addition to my medication, I started a restricted low-carb diet on Friday, November 15th. I have not had a seizure since Sunday November 17th. I have only experienced a few visual illusions, small blue sparks - the kind that generally lead to pre-ictal fear and then simple complex, tonic and absence seizures. There is no fear. The sparks come. The sparks go. No seizures.

The first few days it felt like a coincidence. It had to be.

My life brought a great deal of stress that week and yet I had no seizures. Not one. My calendar remained blank.

By week two I was back on the treadmill. I feel compelled to exercise. I am not lying on the couch. I am not exhausted from seizures.

I ate turkey and a bit of green veggies on Thanksgiving. I did not miss the stuffing, the candied yams, the cranberry - they looked delicious but I did not miss the seizures.

On day twelve, yesterday, I felt compelled to add Yoga. My body and brain wanted to stretch and relax. I rolled out my pink Yoga mat. Calm. Balance. Breathe.

It is 6:30 AM and I feel alive, alive in a way I have not felt in a very long time. <3

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

Cognitive Seeds

It is after midnight. I am experiencing complex partial seizures, the first I have experienced at this level since increasing my dose of Keppra to 3,000 mg per day. My symptoms are typical of my previous complex partial seizures. I am experiencing a sense of derealization. I am a hostage to fear. I am falling down the rabbit hole.

A neural storm has scattered and shattered my emotions. Newly sprouted cognitive seeds give life to photonic phantoms which sprout and grow before my eyes.

 

The world is too fast, too loud.   A single point of time, a single memory, is creeping in on a wave of ictal fear. I am choking and drowning in experiential hallucinations.

My higher cognitive functions are totally fucked.

I am experiencing a single point of time. Not a second of time, not a snapshot, a single point. In essence, though, my temporal neocortex, perhaps more specifically my Amygdala, have turned this point into the inexplicable. It is EVERYTHING.  It is a universe onto itself. It is omnipresent and omnipotent. I am overwhelmed, engulfed, my brain has gone supernova and sucked me into a cognitive black hole. 

Brain Zombies - Attack of the Cluster Headaches

If you have ever had a migraine and screamed into the darkness - you know pain.  If you have ever broken a bone and lived months without repair - you know pain. If you have ever been in labor while your body prepares to birth a full-term fully-fledged new human - you know pain.

Been there. Done that.

What you do not know about is cluster headache pain. It IS different. It IS worse. Cluster headaches suck. They eat your brain.

I'd rather have a migraine, broken hip and be in labor while riding a bicycle uphill in a blizzard as a horde of zombies clamber after me screaming "BRAAAAAINSSS!!" than have a cluster headache.

I mean it.
I do.

-RQ

A TRIP TO AREA 51

Happy Friday! Here's a cheesy video commemorating my recent trip to Area 51.

Director's notes:

• I so totally did have an absence seizure at THE Black mailbox
• That tarantula was awesome
• My actors worked for Butterbrot
• Our rooms had no heat but were clean
• I met a one-eyed horse

I have no idea why THESE pics turned out this way. You HAVE to see them in their original unedited glory:

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

Don't Give Up - Some Days Suck

Dust yourself off and get back up!

Monday was brutal. I had a number of seizures and felt horrible for most of the day. I felt defeated. I HATE every time I have to take my phone out and punch shorthand seizure codes into Google Calendar through a cloud of tears, snot and cries. I want to type FML, WTF and SUCKS. Seizures SUCK. You know it, I know it. It's okay to say it. It's okay to cry, it's okay to feel depressed but it's not okay to give up.

Today I have felt incredible - lots of work done, no issues whatsoever. Seizures? What are those? Never heard of such a thing.Tuesday - muse day. Today is one thousand times more inspiring than yesterday.

What was the difference between Monday and Tuesday? Monday was stressful. Extremely stressful. You are not a wimp if stress triggers your seizures. Your brain might be a jerk (pun intended) -  but you, no, you are no wimp. You are strong. Every tomorrow holds possibilities. Every tomorrow could be better. If not tomorrow, then the next day or the next.

Today is a beautiful day.

Here is the first thing I saw this morning:

Good morning my love!

I haven't even left the house yet and I already miss you. I love you so much! You will have a good day today. I know it. I love you!!!!

-A 

Thank you A. Thank you for being the calm voice that weathers the strongest of electrical brain storms with me.

And Now For Something Completely Different

By request I present Roadrunner Eating Meatball.

#ghostingitforward #GIF<3

Glitchy Monday

Nothing major but Monday has been a bit glitchy.

First Seizure Free Sunday

Sunday was amazing. It was my first Seizure Free Sunday in months. Took a fantastic day trip in the convertible. No. I was not driving. It was beautiful and sunny out and I got lots of great photography time in.

It was a nice change from Seizure-y Saturday.

 I'm very busy today but had to stop by and say:  Wahoooo!

Happy Monday everyone! Be kind to each other.

We All Fall Down

Welcome to Fall. Fall. This whole mess started with fall, or rather falling. Anyone else ever had an absence seizure and fell down a flight of stairs?

Guess what. My seizure free streak ended last night.

No, it is not the end of the world.

I had a few minutes of irrational fear, visual illusions, nausea and right temporal lobe pain. It did not last for long. It did not cascade into a cluster of seizures. It did not feel as uncontrollable as before.

Time to take my meds and start my seizure free Sunday.

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.