the wrong side of the bed

It used to be that when I was depressed I would listen to sad music. It seems that now when I am depressed I also visit epilepsy websites.

Sometimes it doesn't bother me as much, but other times taking pills everyday just reminds me of all of my problems. The pointlessness of taking the pill when I am destined to die alone and it is just making me gain weight easily. The constant need for me to take anti-anxiety/anti-depression meds so that I (supposedly) don't get really sad. The 600mg of Lamictal and 900mg of Gabapentin I take to keep the seizures at bay.

Ah, shit. A song by Daniel Johnston just came up on iTunes. Impossible Love.

Labels: epilepsy, music, pity party

i have other, more distressing news, but i will tell you about my brain instead. i get to go to the neuropsychologist on october 3rd. the testing will take 4-6 hours. i'm not really sure what i will be doing and the woman who scheduled my appointment was not terribly forthcoming with information. i am happy to go and they can do whatever they want to me. within reason.

i'm afraid that my medications keep me up past my bed time. i am always exhausted, but when i go to sleep, i don't actually go to sleep. i need to stop taking my pills before i go to bed. even though the label on the side of the container indicates that i may experience drowsiness. big fucking lie. i plan to be a zombie tomorrow, which is great because i have to chair a meeting at 8:00 pm and then possibly go home and bake a cake.

Labels: epilepsy, tired

okay, but i saw my neurologist this morning. he referred me to a neuropsychologist who will (likely) do a "battery of tests" on me. IQ, spatial and verbal memory, little recall tests, and stuff like that. could be fun. my doctor kept saying that the neuropsychologist would be very interested in my cognitive abilities. i don't think i mind feeling like a rat or a toy.

my doctor told me, which he hadn't mentioned before, that the temporal lobe is involved in memory. i'm sure i could have looked it up myself, and maybe i did. who knows! he also seemed to stop down-playing the size of the damaged area.

we also discussed what would be benefitial about donating my brain. i asked, he didn't suggest it. he told me that, yes, my brain would be a valuable resource. at my urging, he explained what they would do and what they would probably find. i'm excited at the prospect of people examining me postmortem. one of the saddest things about being alive is that i cannot look at my guts and see how i am made. i know i can see how other people are put together, but i want to see my skeleton, my muscles, my organs...

anyway, back to my brain: i guess i hope there is a problem. it would certainly help in the reduction of negativity i feel about my overall failure at life. at least at the life i planned on having. i will let you know how it goes. i don't have the appointment yet. i have to wait on the request to go through my primary care physician.

Labels: epilepsy

this is the kind of thing that makes me really wish that i had been diagnosed with something other than anxiety when i was in college. this story is pretty much what happened to me. i was out of my gourd when i would drink while on paxil. it felt awesome, but caused my friends great deal of concern. and i wanted to drink a lot.

this thursday, the 29th, is the anniversary of my diagnosis with epilepsy. i am happy about this because it was the day that i was put on medication to stop my seizures and the day that i finally was put on the path to kicking effexor. i wasn't allowed to stop taking it until they were sure that i was going to tolerate the lamictal. they didn't want to get me all screwy with my body chemistry, i guess. so, it probably took me 6 months to actually be rid of the stuff. i think i might have been taking something else, too.

i just remembered that i started seeing a counselor when i was in high school. i remember begging my mother, even though she agreed readily. i thought she was going to say no. i'd been hinting around at it for a couple of months and she had even said that there must be something wrong with me.* i wanted to go because i was having those weird episodes that i assumed were anxiety. i would get really confused in class and i complained of having deja vu** all of the time. i even complained about feelings of unreality and that the light would get really strange and that i couldn't see properly.*** i probably could have been diagnosed properly in high school. anyway, i will stop being all cranky and bitter. instead i am planning to treat thursday as a celebration of sorts. so yay for me! i told some of my friends that i am expecting greeting cards.

* okay, probably some of what is wrong with me is anxiety and depression. my mom had previously mentioned that i seemed like i had problems with both at earlier times in my life, but i don't remember having seizures before high school. i mean, maybe i was having seizures, but they were milder or something. anyway, the first time my mom suggested that i might need some sort of therapy was when i was five. i cried a lot and had insomnia when i was little. my mom said that if i didn't cheer up, she was going to send me to a psychiatrist. i don't know.

** feelings of deja vu are common for people with temporal lobe epilepsy. it is "classic". i wonder if a doctor would have caught this.

*** unreality and mild hallucination are also common. i remeber that it always got lighter when i had a seizure (in the early days). i would get weirded out because everything would get really bright but washed out looking. some people have visual hallucinations and some people smell things that aren't there. some people can have full on hallucinations, but i am not so lucky. that would probably be scary, but so much more impressive. i just lose all sense of place. dang, i am so boring.

Labels: childhood, epilepsy, happy?, mom, things are relative

while home for christmas, i didn't really see any friends, except for sean (he doesn't count because he is very nearly family - i did live with him, you know). jon, hilariously, ran into a friend from middle school at a comic book store. his friend hadn't changed a bit. he still lived with his parents and, according to jon, still talked too loudly.

have i changed at all since middle school or high school? yes, decidely yes. at my good grandmother's christmas event, i learned from my aunt cathy that my mom and brother called me the anti-christ** when i was in high school. i was sort of prone to fits of yelling and i told my family that i hated them all of the time.

in college, i suppose i was much better. i didn't yell as much. i just moped and hated myself in a more quiet way. but, i also got a bit quirkier. i mean, i was a freak in high school. i wore ties in my hair in place of scarves. i kept a giant orange pig in the backseat of my car. when people asked me what it was doing there, i would tell them that it was my car pig. duh. his name was claudius, i think. my friend clare and i developed mock obsessions with sting, woodpeckers, and my friend adam jacks.**** in college i took to dying my hair funny colors, wearing totally insane clothes, including a pair of yellow polyester pants that were too short, and covering myself in temporary tattoos. in high school, i thought it was a sign of weakness to laugh; in college it was spit take after spit take.

anyway, at one point in college, i had bright red hair. not the kind of red i had about 3 years ago, but a more run lola run red. when i had hair that red, men were constantly hollering at me from passing cars. the homeless guys outside of the store where i worked made comments every day. i never have random people tell me i'm attractive.

(okay, once, walking outside a gay bar, a woman told me, "you are beautiful, do you know that?" but that is about it. oh, and i guess there was that jim anchower looking guy who sent a drink to me when i was at paul's club. also, when i worked at a grocery store during high school, a woman told me that i had a nice hairline.)

when i had red hair, it wasn't always flattering what men said to me. i'm suprised i didn't get that "do the drapes match the carpet" thing. mostly guys tell me that i am fat. seriously, drunk men tell me that i am fat all of the time. hey, guess what? i totally know that i am fat. so, i guess, more people think i am fat and ugly than think i am attractive. in fact, at least one boy a day told me i was a "fat cow" when i was in elementary school. "do you want to go with me? just kidding, you are a fat, ugly cow." thanks boys, i get it.

anyway, what is it with guys and red hair? seriously. i like having red hair because i like looking like a comic book character, so it is either red, black, or blonde. black makes me look kind of washed out, and when i am blonde, there are practically arrows drawn on my face pointing out every blemish, so red it is. i kinda hate that i get more attention when i have red hair. aren't i attractive when i have brown hair? my ex-boyfriend sean didn't think i was cute at first (for the record and to be fair, i didn't think he was cute, either). he didn't think i was cute until one day when i had bright red hair and was wearing a white t-shirt and blue pants. he decided i looked like a fisher price little person. um, hot.

sean is constantly telling me that people find attractive what they find attractive. this is usually after i go on a rant about how his pal zak only likes pencil thin girls with giant breasts. i especially hate that zak dismissed me when he first met me because i wasn't (1) a hot girl or (2) a boy. boys, while not hot, are clearly more fun to talk to than ugly girls. sean doesn't realize that zak blew me off because sean is a boy, and thus worthy of zak's attention. he obviously didn't see things from my perspective. eh. fuck zak. but not in the nice sense of the word because he would just like that. at least he would like that if it weren't me.

anyway, i guess sean is sort of right about people being attracted to what they find attractive. i mean, my first crush was on keith from voltron. i've had a thing for people with dark brown hair and brown eyes ever since. sorry to all of you blondies out there. not that i wouldn't like you if you were towheaded. it just might take me a bit longer to, you know, get all warm for your form.

my hair is somewhere between brown and red red right now. best of both worlds.

* jon admitted in the car today that this was a good song. i think it is one of the best songs in reccent musical history, but what do i know. anyway, jon is such a metal head that i didn't think he'd like bob dylan. who knew?

** i am so johnny rotten.

*** my family rules the school. i am going to chalk my cruelty up to my undiagnosed epilepsy. what can't i blame on that? it is probably the most awesome excuse i have ever had in my life.

**** adam, if you are reading this, i had a tremendous crush on you. i'm sure you knew that, tho. you do have pretty brown eyes. in fact, i just google-stalked you and found a picture you from your brother's website. i almost posted it here, except you are wearing a dorky headband. you know the picture; it is the one from the from the MS bike ride. anyway, don't tell clare, all right? hey, i just google-stalked clare! i found clare! should i email her? i'm scared.

Labels: epilepsy, family, jon, sean, texas

dudes, the meds seem to be working. no seizures since my dad's birthday on september 9th!

Labels: birthdays, epilepsy, good things

today is mix it up day (in the US and canada, possibly the UK), which is part of national bullying awareness week (in canada). the NEA suggests that bullying week already happened, but that is so united statesian of them. as i have mentioned, this is also national epilepsy awareness month. until december 1st, you should also be aware of adoption, alzheimer's disease, caregivers, diabetes, family caregivers, marrow, and recycling. i'm sure there are more things to be aware of, too, but i am not going to look for any more lists.


i'm about to write about something that people are not going to like. last month was national breast cancer awareness month. the thing about breast cancer is that people are pretty aware of it because of huge media campaigns, which is great, but there are some things about it that seem unsavory to me. like using breast cancer as a selling point for your expensive watch or t-shirt. i'm glad these organizations give money for breast cancer research, etc., but why do we have to buy their products for this to happen? look at this website. obviously, i hardly know what i am talking about. these people could be wackos, but there are some interesting things to think about. for example, why should i eat a bunch of yoplait when i don't really like yoplait? i tend to buy expensive hippie yogurt. maybe i should just give some money. after all, according to think before you pink, "A woman would have to eat three containers of Yoplait every day during the four-month campaign to raise $36 for the cause."

Labels: complaining, epilepsy

you are tired of hearing about it. i can't shut up. this is obviously something that has affected me deeply. i always seem to have a new thing to worry about - car insurance, memory problems, my current slide into depression. and i am not even sure, aside from the car insurance, if these things are related.

however,

since it is national epilepsy awareness month, i feel justified in writing about this: my memory problem is getting quite bad. i feel like i am losing my mind. i have been on medications before (effexor? celexa?) which caused verbal memory problems when i first starting taking them. i feel like i am having the same problems now. i am also having trouble remembering things that happened reccently. i can't remember things that are quite "big" memories. not suprisingly, i can't remember names. i think i never could remember names. i used to remember events, though. now i forget bands that i have seen, movies i have watched, places that i have been. i ask jon if we can rent movies that we watched a month ago because i think i have never seen them. i can remember things well that happened before. i feel like i can remember every single day of high school. i remember much that i learned in college. i am losing a lot that i learned in grad school. i can't remember if i have read certain books before. i look at my shelves and wonder if i have bought a book that i intended to read or if it is actually a book that i have read. does my problem have to do with the fact that i was having an increasing number of seizures in the last few years? i was having 20 a month before i went on medication. does it have to do with medication? anti-depressants and anti-seizure medications both affect memory. how can i remember stuff? i was going to try to write down things that happened to me at the end of everyday, but i am not very disciplined. i tend to write things down in numerous places. a system would likely help. one problem, though, is reading what i wrote and getting it to stick in my brain. i need to work on this.

jeremy, i told you i couldn't learn. is it true? i know you read books about procrastination (i actually remember this), but can you suggest a book on memory?

Labels: complaining, epilepsy

i caught a bit of a story on the local news just now. i don't know how to express the kind of sad that it makes me. i'm not going to cry over it or anything. i think it makes me feel sort of weary and sad. according to NBC15, a man climbed a statue of a saint to pray for his epilepsy to be cured. unfortunately he fell when he was trying to climb down. the statue was quite large. he ended up with a serious head injury. serious head injuries are NOT good for epilepsy. i have a tolerable kind of epilepsy. i think if i had clonic tonic seizures i probably would have been diagnosed early, but i also think that i would be much more upset everytime i had a seizure. it is so much more noticeable to others. not only are mine invisible to those around me, but i can almost convince myself that they never happened.

Labels: epilepsy

i spoke to constance this evening. i was glad to hear from her, but i was also dying to get to sleep.* you see, i had a very, very bad seizure today, probably because i got about four hours of sleep last night. i didn't tell connie about the seizure because i didn't want her to get all concerned. i didn't want to get all depressed about it again. if you are reading this, i'm sorry that i didn't tell you, connie. i know you care about me. i just didn't want to make either of us upset.

* if i am so dang tired, why am i up now? it is because i woke up needing to use the restroom, and then i had to floss. i have developed this weird nighttime flossing habit. i can't sleep as well as i used to, so if i wake up, and i inevitably do, i floss. i have never been a diligent flosser, so i am hoping to receive praise from my hygenist when i go in to the dentist on the 15th. i really want to get some minty flavored floss. the wide, ribbon kind.

Labels: epilepsy

24 days since my last seizure. that seems pretty good! well, except i have been having them farther and farther apart. it was about twenty days in between the last two. still.... keep your fingers crossed for me, okay?

Labels: epilepsy, trying to be positive

in so many ways, this past year has been the easiest i have had in a long time in terms of depression. i mean, i get depressed when i should. when the situation calls for it. i haven't been sad for no reason. the reasons i am sad are completely valid.

this is what i started telling my neurologist this morning. i told him all of this after we discussed the long term possibility of excising a piece of my temporal lobe. i told him that i felt overwhelmed by all of this. i also told him that i was angry, but i think that my anger is valid, too. i mentioned grad school to him, and the problems that i am having with that. i told him that sometimes i feel like charlie in flowers for algernon, and he smiled a funny smile. i think if i had said one more thing, i would have burst into tears and clung to him.

i think i am beginning to have a little crush on my neurologist. this is normal, right? i think it even has a name. despite how common this might be, it sort of wigged my out that i might want to hug my doctor and cry my heart out.

you know you got it, child, if it makes you feel good.

Labels: epilepsy, sad

A: the farmer's market.

Labels: epilepsy

from the epilepsy foundation website:

Ineffective treatment, delayed or lack of access to high-quality, specialized care, and the severity of the underlying neurological disorder are all possible contributors to the development of hard to control seizures. Whatever the cause, the result is the same: a lifetime of dependence, enormous cost to society, and a formidable barrier to individual productivity and happiness.

so, yeah, the part that i bolded? not so encouraging. also, an enormous cost to society? i guess i apologize to you folks for the burden you are enduring on my account.

* i just wanted to look up information releated to the ADA and driving.

Labels: epilepsy, worry

well, i hadn't had a seizure in quite a long time (2 weeks?), but this holiday weekend was a busy one for me. a seizure saturday, a seizure sunday (while waiting for jeremy and sal to cross the finish line at the mad city marathon), and something not quite like my normal seizures last night. could they be carole's fault? perhaps she brought them on. epileptogenic carole, that's what we call her.

Labels: epilepsy, friends