98 bottles of beer on the wall

oops - forgot to post this

Nope - didn't watch a movie so far, was surfing the internet looking for information on the type of EEG I'm getting done. Sigh ...

I read so often about the persistent fear or stigma of epilepsy. Perhaps ... well, no not 'perhaps', definitely ... I am insanely lucky. The vast majority of my friends are well educated. My family is well educated. I hardly ever have seizures. I'm pretty sure I could count them without needing more than my fingers & toes. I got the seizures under control on the first drug. I've never had my driver's license revoked (issues, yes, revoked no); hell, I have a license to drive. One of my first cousins has epilepsy. Last year, I had a (hem, "real") laboratory course for the first time in years, no decades. The great impact of epilepsy? I told my teachers, who simply said "oh, okay, let me know if you need anything". See above about educated acquaintances.

People say they fear to reveal they have epilepsy due to the response of ignorant proles. Even if divine/demonic possession isn't the common diagnosis any more.

I was reading these stories (the Epilepsy Foundation has a great website - give them money if you can't think of what to do with that excess in your 401k). How could I possibly compete with such tales of courage & perseverance against such obstacles?

When I was pregnant with Jr.Gopher#2, I heard about a program the Epilepsy Foundation has: since one cannot perform clinical trials on pregnant women, there's no way to do a prospective study of anticonvulsant drugs during pregnancy. They solicit women to submit their pregnancy related medical records to a study group. They can at least get data retrospectively. I had both sets of records forwarded to them. Especially since I was on different medications for the 2 boys. I figure I should do my part to contribute to the available knowledge.

But, how to eliminate society's residual ignorance?

I figure, since it has a relatively minor impact on my life, my battle standard is to refuse to refer to epilepsy by sissy euphemisms; to be completely open about having epilepsy (albeit not one of those people who gets in your face about it). I always check the box "handicapped" (or whatever it's called today) on demographic questionnaires. This has gotten me some really strange looks during job interviews.

I'm soooooooooooooooooooooooooo tired ...

97 bottles of beer on the wall

It's 2:46 a.m. Only 3:14 to go before I need to leave the house.

99 bottles of beer on the wall

It's 12:06 a.m. Only 7 more hours to go. I am scheduled to have a sleep-deprived EEG this morning @ 7. I'm not allowed to sleep tonight. I've been so under the weather recently, that this is going to be a significant challenge. I'm going to write/start a review for Up, and then watch something amusing on video with the hope I can stay up. They were pretty adamant that no artificial means of alertness is allowed. Admittedly, given how icky I feel, the idea of drinking coffee is repellent right now. I might try to write the Annual Family Report.

Pursuing a 2nd opinion about some recent complications from my epilepsy, I figured I should take advantage of my proximity to the 2nd largest research hospital in the state - 2 buildings away from my lab. The referring doctor (3 floors up from my lab) said this fellow was the go-to person for seizures. Cool, eh?

I alwasy feel like I have to apologize for going to the doctor's and try to assure her/him that I'm really not a hypocondriac. This time - the first time I've ever sought a 2nd opinion - I felt compelled to tell him that I realize "I don't know" is sometimes the best answer anyone can offer. I guess I didn't want to come across as dissing my regular neurologist. (Whom, it turns out, was trained by him.)

I looked over his shoulder while he reviewed the MRI scans of my brain from this Summer. This is just the coolest. The regular stuff that I expected: cross sections of my brain. Then there was the 3-D images of the blood vessels in my head. Just the blood vessels. In 3D. Whether you attribute this to the Divine or the Random, by God it is utterly beautiful.

After having me do totally mundane things: walk on my toes, on my heels, touch my nose, etc. and collecting a medical history, he pops out with a diagnosis which is more specific than just 'epilepsy'. Then he gets an oh-so-faint twitch of the lips reminiscent of a smile, and says "this is interesting". Just what one wants to hear.

1:20 a.m. god, I am soooooooooooooooooooo tired ...

Epilepsy

NPR's Talk of the Nation broadcast recently Living with the Uncertainty of Epilepsy. A classmate of mine called me in the middle of the afternoon to tell me it was on. It's a great discussion.

More people die every year from epilepsy than breast cancer., according to the guest speaker. Hmmm... According to the American Cancer Society, 40,930 people are expected to die from breast cancer this year. How many people die from epilepsy? Well, drowning because you have a seizure is likely to be reported on the death certificate, since the person drowned, regardless of the cause. There is a small number of people who do die directly from seizures. It is quite certainly not over 40k. Who among the listeners questions that statement, if they have a loved one with epilepsy?

Well, I did, simply becuase I wanted to know how many people do die. I've seen the figure 812/yr, but it was from a semi-reliable source (which means it might be right). It wasn't from MMWR or some other über-reliable source.

There isn't even a single definition of what constitutes epilepsy. It's usually like Stewart & pornography: I won't try to define it, "but I know it when I see it."(1)

Take one guess about who gets more money? Dispersal of money for medical research is a boutique solution. It's like pets: the cute animals get picked first. The obsession with modern feminism has made breast cancer chic. Women with it look just like women without it. Unless she's going through chemo, it isn't going to be noticeable. Breast cancer shows up later in life; she's likely live most of her life without it. Epilepsy shows up with little children and often lasts the rest of your life. Breasts are more attractive than brains.

A description of the drug I take: The exact way lamotrigine works is unknown. You tell me whether people have anti-cancer drugs that are used without understanding how they work?

In the past two years I've had more problems with managing my epilepsy. ("more" being a pretty relative term, compared to others' "1 per day" or "4 or 5 per day".) I switched medications. I've had wierdo events that I'm not even sure if they're seizures, I'm assuming they are simply because I have epilepsy. But my neurologist opines that one simply doesn't remain aware during seizures, therefore this couldn't be a seizure. I had a seizure when I was 8 months pregnant with Jr.Gopher#2. The idea of going swimming with Mr.Gopher in lake Michigan was nice ... but so far away from the rest of the world with relatively trecherous water ...? No. One of the editors at the Lansing State Journal had a daughter who drowned at the age of 25, from a seizure. I was at her funeral. While I cry at funerals anyway, this seemed to be the end of such a full life. I was 37 or so at the time.

Yet I am left with a large minority who have well-controlled seizures for whom the only major inconvenience is remembering to take my medicine twice each day. Well, actually pacifying the Minnesota DMV is really annoying, but only an annual intrusion. I'm horrified at the stories of the majority of people with epilepsy, especially parents/kids coping with the idiots inhabiting our society. I told my classmates I have epilepsy, and their response was either "oh?" or "are you doing okay with school?" I didn't have anyone run away from me. I'm sure their response would have been the same if it was one of my kids. Jr.Gopher has epilepsy? Sure, we can get together on Sunday for the kids to play together. As opposed to people who get freaked out about it.

If you have the chance to convince some millionare to spend her money on something worthwhile, try the Epilepsy Foundation.


(1) Jacobellis v. Ohio, 378 U.S. 184, 197 (1964)