symptomatic
the long overdue health report is that since i’ve been back from burning man, i’ve been experiencing some moderate to severe physical symptoms that are vague yet consistent. these include: dizziness, vertigo, weakness, fatigue, strange burning/tingling sensations in my head and up and down my extremities, nerve tweaks/spasms, vision funkiness, pressure in my head, and sometimes nausea.
a few weeks ago i went to see my general physician and she didn’t have much to say – such vague symptoms without anything really “happening”, she couldn’t give me a diagnosis other than i should literally and figuratively get my head checked: revisit a neurologist, given my history of seizures (which were never attributed to anything specific being wrong), and possibly a psychologist/psychiatrist, to see about my anxiety.
after looking at my old records and giving me a few tests and asking a few pertinent questions, the neurologist also figures it’s generalized anxiety, as i don’t actually have what one would call a “headache” (suggesting a scary problem like a brain tumor), and my cognitive functions have remained just fine (suggesting i haven’t had any seizures), but with the continuing persistence of symptoms i am having the MRI and EEGs done again next week.
at the end of last week i thought i was getting better, that every day i was feeling a bit stronger, and i was feeling 90% ok. but then saturday came, and i spent the whole day weak and trembly, and since then i’ve felt horrid.
this has been more or less occupying most of my time, dealing with this, and has kept me from doing a lot of things, being a lot of places, writing a lot of blogs. i’ve been able to function at work just fine, although i’m probably a bit more irritable and surly than i should be, and i’ve tried to go on with my life as though everything is fine, which is maybe the worst thing to do, not ignoring the problem but not letting it take over my life. but everywhere i go, i am monitoring all these strange sensations in my body. when i walk down the street for lunch, i wonder if i’ll fall to my knees. when i’m sitting in a theatre seeing a play, i feel weak and wonder what would happen if i lost consciousness. like the world is so heavy, and my life force so weak, that i just might collapse under the weight of it all. i have also had a couple of standard anxiety attacks – the sweaty palms, the difficulty breathing – but these other symptoms are pretty much nonstop. all day long. the weakness and dizziness, and weird pressure/tingling in my head. i haven’t fallen, i haven’t lost consciousness, but it constantly feels like i might.
it’s so hard to write this here, i don’t know why. maybe because i don’t want to hear everyone’s advice or seem like i’m asking for sympathy. or maybe because it feels like i am overreacting, and putting this into writing here, for everyone to read, feels like making a mountain out of a molehill, exaggerating my symptoms. are they really as bad as they seem? or am i just being hypersensitive? maybe because its so personal, and when things are really deep, really personal, i am usually silent, and this seems like a lot of myself to share. or maybe because regardless of what is or what isn’t, i’m fucking scared.
Filed in autobiographical, epilepsy, food, health & vegetarianism, me myself and i, most linked/commented on | Tagged with anxiety | Comments (12)hoping never again
i took this survey on sleep disorders after vera linked to some info about them. this focusses particularly on the experience of waking in the middle of the night and being unable to move while sensing beings or movement in the room. many who have experienced this have attributed the experience to alien abduction because it is so surreal yet vivid and intense.
i haven’t had a seizure in over a year. i’m still taking the meds. this survey made me remember – physically remember – the experiences and those that lead up to them. here are some of my answers to the questions, to give you an idea of how totally freaky the whole experience can be:
Filed in epilepsy | Comment (1)what a drag it is getting old
i went to the neurologist again this morning to see if he had any new ideas on my seizure problem. he didn’t. i didn’t give him the whole story, for various reasons, but i wanted to find out a few things, particularly if the panic attacks i have recently suffered might have anything to do with either my epilepsy medication (as a side effect) or if they are indicators of seizure itself. because i’ve never had a seizure while awake, i don’t know what one feels like. but i have had panic attacks, and i figured they must be related.
Filed in epilepsy | Comments (2)epileptic nights
i was out sick yesterday because of seizures for the third time this year. the first time was april 11th, and, then again in august. tuesday night i had three seizures while sleeping, and then last night i had one more. the frequency is increasing, and i’m starting to get worried. i haven’t been taking my medication regularly because it makes me feel kind of spacey *all* the time, and previously the seizures were only once a year or so. I will try doing that and see if it helps. i just HATE the thought of taking medication twice a day every day for the rest of my life, but i guess at this point i have no choice. the thing that sucks most is that when i call up the neurologist and tell him my seizures have been more frequent, he’s going to take my driver’s license away (state law).
why is this happening to me??
Filed in epilepsy | Comments (12)head. ache.
early this morning, i had another seizure. jay woke me up around 7:00a, and i felt absolutely awful. i think the worse thing about it is that i can’t remember ANYTHING for the first half hour or so when i wake up… i sat for several minutes trying to remember what month it was.
i met a guy at my friend kirstens birthday party last weekend who is now a resident in my neurologist’s office. we talked about my experiences with epilepsy for quite some time, and he made me feel a lot better about all this. he reconfirmed what i had been told and read about it not having any permanent effects, unless you stop breathing for too long of course, and that if this is only happening occassionally then taking the prescribed medications, three times a day, which made me totally spacey, really wasn’t worth it. at first i was also concerned that my strict diet might have been a source of the problem, but they didn’t think so. my blood tests and everything have always returned normal; actually, better than they expected.
so i’m going to give him a call and see if he recommends any action, or if i should just continue with my “wait and see” strategy. anyway, i’m seriously groggy and out of it, so i won’t be posting/responding much today.
brain damaged
i was out sick from work yesterday because early yesterday morning, while i was sleeping, i had another seizure. i really wish someone could tell me what the hell is going on with these things. i woke up feeling totally disoriented and with every muscle in my body aching. i went to work briefly and was home in bed again by 10:00 a.m. and didn’t move from there again until this morning. It’s weird how disoriented you get – trying to remember small things like the last place i had my coffee cup or what i left off doing at work on Wednesday. it takes a few days for my memory to recall everything. i’m not sure if i’m going to go through the whole rigamarole with the neurologists again, or what. if i go back to see the dr., they’ll a. take away my driver’s license again, which SUCKS, and b. put me on medication, which in effect zones me out most of the day anyway.
the past three years, i’ve had these seizures once per year, right around this time – April/May/June, and then that’s it. the doctor thought it might be an allergy, could also be my sleeping problems catching up with me, or even daylight savings time? but couldn’t give me anything conclusive. all my brain scans and blood tests came back normal before, but i guess maybe i should have them run again? i dont know. it’s a waste of my time and money for me to keep going and have them keep telling me they don’t know what’s wrong. the very nature of epilepsy is that it’s defined by unexplained seizures, so i’m not sure there’s anything that can be done. *sigh* why me? i have to ask.
Filed in epilepsy | Comment (1)old blog may 2002 posts
05.30.02
::We were somewhere around Barstow on the edge of the desert when the drugs began to take hold….::
so it’s another three day weekend for me and jay. tomorrow morning we’ll be driving to vegas for to see at least 4 bands, possible more:
particle at midnight tomorrow night, the roots and antibalas opening for the trey anastasio band on Saturday night [for all you non-phisheads, trey is (was?) the lead singer/guitar for Phish], and possibly Particle again. woo hoo!
we will also be seeing a bunch of our east coast friends who are making the trek for the shows; it should be a totally raucous weekend, and i can tell you right now that monday is going to suck, but i’ll try not to think about that now.
05.28.02 back to the grind
the NASA dialog always gets comments. it’s a very hot topic, apparently.
anywho, i’m back from a great weekend of camping up on California’s =http://www.sunset.com/Premium/Travel/1997/09-Sep/LostCoast997/LostCoast997.html“lost coast”, which is lost to most Californians, except for those with monster trucks, camouflage, and loud barking dogs. The number of people driving large 4×4 trucks up and down the beach was not only really annoying but unsafe as they were all drunk driving. Now, i grew up in a pretty redneck town, and that kind of thing can be fun if done in an appropriate place/time (like on private property…). However, this was a public campground, and i felt physically endangered by these people; we couldn’t even hang out on the beach without the fear of getting run over. they also disrupted the quiet wilderness with their loud trucks and radios blaring Eminem, and that’s just not cool. to respond, i have prepared a complaint letter to be sent to the Ranger’s office. there was absolutely no one there to stop them from tearing through the campground and ripping up the beach.
Outside of that contingent, due to the unmarked, 6 mile winding dirt road to the campground, it was a very secluded campground that was not overrun by old people with large campers and families with screaming children, which you usually get on memorial day weekend. Once the 4x4s went to bed, it was nice.
then back to work today, for complete culture shock after the 4×4 experience 
i work for a very small environmental consulting firm, and the majority of people here (that would be everyone but me) hold advanced degrees (law, masters or Ph.Ds) from ivy league universities. during our staff meeting this morning, these are some of the words that were used in conversation that i either only had a vague contextual notion of or had to come back to my desk to look up: byzantine, ephemeral, eviserated, impetus, garner. it’s like i’m going to school everyday. but, i guess that’s a bad thing.
finally, last but not least, 2 quick prescription positives for this week:
1. only a 3 day work week!!
2. we’re heading to Vegas to see the Trey Anastasio Band, Particle, and possibly others.
05.23.02
for many years i have publically and privately hated NASA. Outside of some of the good things (such as….. missile defense is the only one i can think of), i think it’s a waste of money. i hear all kinds of reasons why people think it’s a good thing, e.g. “what if earth is inhabitable one day? we need to have somewhere to go”(sidenote: this article based on a U.N. report says “one day” could be in about 30 years- is NASA going to find another inhabitable planet and be able to get us all there in the next 30 years? i think not.) , “what if they find god out there?”(yeah, right), and “they’ve discovered so much important stuff!” (like what? medicines? very few.).
also, people give defenses like NASA has the smallest budget of any Federal Agency”. true. but that’s still 13-14 billion dollars every year, even if it is only 1%. that money would certainly do some good for the education system, say, in Detroit, feed starving people around the world for many years, or help solve some of the water problems here in California.
we have so many horrible, existing problems on this planet right now that need to be taken care of, spending all that money on trying to find life on Mars seems like such a waste to me. what good would finding life on Mars do again? and i don’t want any comments about “if it weren’t for the space program you wouldn ‘t have the computer you’re using right now” and all that. so what? would my life be over then? no.
05.22.02 : i’m obsessed
so, one of my OCDs [yes i am using that term lightly] is that there are certain online “tasks” i have to take care of when i get to work before i can actually start working. one of those things is checking my email (personal, not work). did anyone email me today? what’s up with the latest concerts in SF? did anyone respond to that spam email i forwarded that said if you didn’t say a prayer to Jesus within 10 minutes of reading the email then Satan would own your soul for eternity?
another is checking this site to see if anyone has actually read this page, and now that i have SiteMeter, i can see all my traffic too. i know, it’s a bit Big Brother, but hey, it’s my site and i can if i want. (i hope my boss isn’t reading this, but if he was, i would know! mwuuuhahahha!).
i know other bloggers also get paranoid about not being able to check their blogs (or other people’s), like you might be missing something very important.
it’s called addiction. it’s called obsession. here it is 4:00 p.m., and due to the power outage this morning that lasted until 2:30 today, i haven’t done a lick of work. partly because first i wrote this entry, my computer froze, and i had to rewrite the whole thing again. had to. that’s how bad it is.
05.21.02
you know it’s going to be a fun day when you get to work and realize you forgot to put on deodorant.
05.20.02
i really should blog more on the weekends, because by the time Monday rolls around, i’ve forgotten everything. so, what can i say about the weekend, and what are my prescription positives for this week?
Friday night was blah, as jay and i were both exhausted due to thursday night. so we did nothing. Saturday was incredibly beautiful and sunny, and we went for a walk, took a nap, and then went to visit my friend Greg out at Ocean Beach. After that, we went to visit our friend Andrew (of transmission fame), where we watched O Brother Where Art Thou? again, and ate lots of junk food. On sunday, it was pouring outside, but we made it out long enough to visit the nearest Cost Plus World Market to by myself a long-desired Papasan chair and a nice rug for the living room. Then we came home and couched. not all that exciting, but good weekend nontheless.
also, i don’t know what it is, but i get a lot of comments from random women in convenience stores and places about my appearance. Usually these women are, um, how shall we say, lower middle class looking, and loud talkers. After the Prince concert, i was wearing these hip-hugger bellbottom pants with my midriff showing. We were in the 7-11 and this really loud lady came up to me and said “girl, you should wear a THONG with those pants” (um, i was… but she meant one that showed) “man, if i didn’t already have 6 kids a big belly and lots of stretch marks, i would dress like you.” and then just yesterday, some scary looking woman came up to me at the store, gave me the eye, and then said in this really creepy voice with squinty eyes “i like your hair.” and then walked away. wtf??
::prescription positives:: for mondays:
1. tonight jay and i are going to see The Kids in the Hall live at the warfield in SF. Hopefully it will be hilarious.
2. After the rain, the trees are much greener and lots of the rose gardens bloomed. I love Berkeley flora!
3. Our new apartment is finally starting to look like we live there. We got a lot of the crap cleaned up and most of the boxes are gone.
4. A week from Friday we head to Vegas for the Trey Anastasio Band shows!! Hopefully I’ll be meeting up with quite a few phunkies. yay!
btw, i am reading the funniest book right now: Naked by David Sedaris. seriously – makes me laugh so hard i cry, no kidding. check it out.
that’s it for now.
05.17.02
so we went to check out the Josh Roseman Unit last night at the Starry Plough in Berkeley. definitely worth the $6. with Scott Amendola on the drums and so many other fabulous musicians in the band, especially the wacky mr. roseman (who rambled on and repeated himself quite a bit), i had a good time. the only drawback, i would say, was that the sax player didn’t rip it up quite enough, but still jammed. definitely check these guys out if they come around to your neck of the woods, especially in such a small venues as the Starry Plough. their new album was just released – check it out at the link above.
only in berkeley
perhaps the coolest part of the evening happened before the show even started. i was talking to an older gentleman at the bar who was really into jazz and the local scene about taping and such; he was also kind of goofy, and when our converstaion ended, he thanked me for my stream of consciousness. 
music fans: please check out this link from jambase.com about possible legislation that could affect the music scene all across the U.S. it only takes about 30 seconds to send an email to your Representative (link at the bottom of that page), so please do.
05.16.02.2
finally! if you google me, my website comes up first. Thank you Site Meter! [p.s. i am not the tomato lady]
05.16.02
so after all my self-affirmation yesterday, getting my butt in gear and going to the gym and to yoga, i still turned out to be a total idiot. Jennifer, if you’re reading this, i’m so sorry!!. i got home from yoga and started to get read y for bed, when amy called to see if i was still at the cafe. at the cafe? i thought that was tomorrow night . crap. i totally flaked without even meaning to. i hate it when that happens!!
so, anyway, at the end of the yoga class, the teacher proceeded to read a passage from a book that basically said “most of the stress in our lives comes from trying to change things: change other people, change our spouses, change our government. the true secret to happiness is to not try to change the world around you. see the world as it is, and accept that everything is already in order and as it should be. most importantly, accept yourself.”
i had a knee jerk reaction to that passage. “no!” my mind screamed. “do not accept things as they are!”. now, i’m all for new age enlightenment; i studied the Tao and have continued to study alternative forms of therapy, medicine, and thinking. but, in this day and age, there is so much in the world that needs changing. our daily lives, our diets, our schools, our governments, our politics, our stereotypes. My response to such Eastern Philosophies is that they are self-centered: sure, it’s good to accept yourself, and that is one of the keys to happiness. but to accept fundamentalist religions? to accept corrupt governements? no.
now, i know that if everyone in the world took on that book’s philosphy, then it might be a better place. if all the world decided to stop trying to change the rest of the world, we wouldn’t have the problems we have in the middle east. we wouldn’t have genocide or racism. BUT, wouldn’t we still have pollution? wouldn’t we still have corportate corruption? i guess i’m overly skeptical about the “love yourself, love everyone and the world will be o.k.” philosophy. when read literally, it does not sound productive or compassionate; to me it sounds selfish, even though it focuses so much on “selflessness”. i guess i just don’t get it.
Better by far to see the simplicity
of raw silk’s beauty
and the uncarved block;
to be one with onself,
and with one’s brother.
It is better by far
to be one with the Tao,
developing selflessness,
tempering desire,
removing the wish,
but being compassionate.
Tao Te Ching chapter 1905.15.02::regression::
so i’m gonna brain dump here for a minute, 16-year-old journal style.
i’ve been really bored with myself lately. i stopped going to the gym a month or so (or was it longer?) ago, since it didn’t seem to be doing any good. when i get home from work i’m listless. retardedly enough, i enjoy blogging and websurfing more than anything else right now. somehow writing this webpage and surfing the web (see etcetera) and linking it all back here feels like an accomplishment. i haven’t seen any of my CA friends in forever. when i wake up in the morning, all i can think is “just have to get through today.” and then what? nothing.
self affirmation:i’m going to go to yoga tonight. i’m going to see aimee tomorrow and watch the final episode of Friends. this weekend i’m going to do *something* with myself other than sleep all day and lay around the house.
bright spot in the future: all systems go for the road trip to Vegas for the Particle, Antibalas, and Trey shows. again, however, i need to stop looking forward and find a way to concentrate on today. but it’s just not working. *sigh*.
side note:this morning, the =http://www.mtv.com/onair/osbournes/>
Osbournes were on Howard Stern, and Kelly is releasing an album. The track they played was her singing a soft-punk version of “Papa Don’t Preach”. I could do better. maybe i should concentrate on being a rock star?
05.14.02
so last night was a very exciting night. First, after work i went to pick jay up at the train station and i was interviewed by Fox 2 news. apparently BART is considering making people pay a daily rate for parking in addition to their fare. as of now, parking is free as long as you pay a fare and get a ticket stub. they totally caught me off guard as i was cleaning out my car, and i said something really dumb like “i think people would rather pay a fare increase than to have to pay for parking and a fare.” now that i think about it, that’s probably not true. so, anyway, at 10:04 p.m. last night and at 6:45 this morning, there i was on the news.
[update: i just went to Vik’s for lunch, and the Indian guy behind the corner was like “hey! you were on t.v. last night!” and, i got a bunch of emails saying people saw it. wow. people around here really do watch the news.]
just before that, at 10:01 p.m., we had a 5.2 earthquake, which made the lamps at home sway. jay jumped up and said “earthquake?” and got in the doorway. i didn’t really feel it; just noticed stuff swaying. i was too focused on the news, waiting for my 30 seconds of fame.
for all you ladies out there: get your butts over to aurabelle’s new website and check out her awesome jewelry!!
05.13.02
so i had a pretty crappy weekend. Friday night jay and i went to see the Lord of the Rings: Fellowship of the Ring, and I was thoroughly disappointed. the movie was flat; the character development was really limited, it was really violent, and i’m not a big fan of obvious digital imagry. so, i’m not going to see that again or the next installments. i’ll read the books again instead.
then, saturday morning while i was sleeping in, i had another seizure in my sleep. i woke up very confused with little or no memory capacity, my head pounding, and every muscle in my body rigid. it’s been almost a year since the last one, and i was hoping that i would never have one again. most of the reasearch i’ve done indicates that the majority of people (1in 20 people will have a seizure sometime in their lifetime) who suffer from seizures have them for unknown reasons. in general they are not harmful to your body (no long term damage) and could be the result of anything from an allergy to something you ate. anyway, i guess this means another round of doctor appointments…. blech.
regardless of all that crap, i’ll shoot out a couple of prescription positives for today anyway:
–the weather here in the Bay Area has been gorgeous lately. April-May and October-November are definitely the best months here.
–I got my Trey tickets via FedEx this morning!!! vegas here we come (again…)!
that’s it.
05.10.02
i thoroughly enjoyed Robert Walter and the band last night …. those guys were all incredible and looked like they were just having the time of their lives. I love a good funk jam!!!
Before they took the stage i got a chance to meet Stanton Moore as he was wandering about Bimbo’s … i was so excited i blushed he seemed to be baffled by the number of women coming up to him to say hello…;-)
05.09.02
so, our man Colin, woodwind player for Transmission (aka my favorite band), was on David Letterman last night, playing clarinet for Tom Waits. Go Colin!!
It was very cool, except for the fact that my body is apparently no longer able to stay awake past 11 p.m. Does that mean i’m getting old?
05.08.02
yesterday’s post changed because craig’s listtook down the postings.
btw, the women seeking women posts are so much better than the men seeking women posts. men would do better if they learned to write (and think) like lesbians.
in other news: 23% of organic produce found to have pesticide residues. it’s not like i thought that my produce was 100% clean – but it’s still better than non-organic: “By comparison, pesticides were found on 73 percent of the 26,571 samples of conventional foods that were tested.” for more info about organic foods and sustainable agriculture, visit my consumer issues page, or link directly to the organic consumers association.
thanks to mike for the news.
05.07.02
ok, so i’m totally slacking off at work, even though i just got back from vacation. it’s not my fault it’s so sunny outside!
for people who are interested, here’s my suggested short reading list for educating yourself on how to understand and change the world:
1. Walden
2. Emerson’s Self Reliance
3. Mark Twain’s Essays on Politics
6. Ishmael
7. 1984
10. Blowback: The Costs and Consequences of American Empire
05.06.02
*whew* i’m back! and, let me tell you, i had a GREAT time with all my friends and family, but it sure is good to be back home in the land of Berkeley, where the sun is warm, the night jasmine blooms, and good food abounds! most people gain weight when they go on vacation…but whenever i go to Michigan i end up losing weight because it’s not very vegetarian friendly up there.
so, anyway, i had a great time driving all over the state, seeing some snow fall, seeing my friends and family, and relaxing a little bit (but not much). some of my old friends i hadn’t seen since 1996 or 1997, and it was super fun (although my neck hurt for two whole days from headbanging too much….hahah!!).
in other news, i’m going to take a break on the diet journal here for a while, as it’s really difficult to keep, and will try to get something more interesting happening here. I’m also going to work on a webpage for my dad’s business, so that will take away from this.
Filed in autobiographical, blogging, epilepsy, events, music | Comment (0)
