I have a condition called AVM (look it up) as well as severe epilepsy. My health issues have crippled me greatly and combined make my life span expected to be about 40. People who have what I do statistically live to be about 40. I'm 32 now.

It often takes me months to find a doctor that will even treat me. They are afraid I will sue them if something goes wrong. So they give me the runaround; this doc sends me to that doc and that one sends me somewhere else, and so on. By the time I find a doc that will treat me, it is usually a doc that tosses random pills (whatever is the newest thing) at me and tells me to go home and die. For this I am always charged several hundred dollars.

When I am lucky enough to find a doctor that does not dismiss me, I pay so much for it that it cripples my life. In 2003, when I had my brain surgery, I was paying about $3800 A WEEK in medical bills. I do not have $3800 a week and I am well employed with my own successful business.

I cannot get health insurance for any amount of money. I have tried many times. My "preexisting condition" will not be covered, which is what I need it for. There is not a single insurance company that will insure me. There are many doctors who have refused to treat me because I do not have insurance.

The right wing (and even some of the Left) seem to believe that the people who want healthcare reform are "welfare cases" and immigrants, and that Obama's plan is to give free healthcare to people who do not work, do not deserve it for whatever reason.

I have never been on welfare, and I have worked steadily since age fifteen. The only time I have been out of work is when I am too sick to walk. Even then, I do freelance work- web design, making crap to sell, whatever I can do. I tell you this because I am sick of the idea that only poor people need healthcare. Poor people already HAVE healthcare- they have Medicaid, which your tax dollars already pay for. Who needs the healthcare reform is the middle class.

Healthcare is simply too expensive.
Even with insurance, too many people get screwed.
Insurance companies refuse payments, cancel policies when a bill becomes high and refuse to insure people who need it... because they need it!

That is the kind of shit that happened in the dark ages. I don't expect it to happen in our day and age and that these companies
get away with it.

The fact is that in the United States, if a middle class person (YOU) gets seriously ill, you can lose everything. Your life can financially be destroyed, not to mention the added dangerous amount of stress this can cause and already ill person and their family. You have $150,000 medical bill? You lose your job (you're sick), your house, your car, you move into the basement of your 70 year old mother's house if you are lucky enough to have one who didn't die from being fucked by the healthcare system.

"Welcome to America! Where your job is to work until you die! Buy shit and die! If you get sick; fuck you!"

Is that what we want this country to be about?

This is not a poor thing. It is a human thing. Do I want America to be more like Sweden? Well, yes and no. Sweden has extremely high taxes... however, they also have the highest educated population on Earth, the best healthcare, the best everything really. Yeah, I want America to be the best. Of course I do.

Pardon me for thinking that if we have healthy people, it would make our country BETTER.

I was not too sure what I thought of Obama. I like the guy- he seems to be a guy that actually cares. I do not get a sense of evil about him as I have with past presidents. But being jaded as I am about politicians, I could not join the Obama change-train and believe he is any kind of messiah (and I still don't). But he was my choice because McCain scared the crap out of me and Ron Paul (though I kinda like him) is nuts. I was proud when Obama shut down Gitmo, but then dismayed when he sent 12,000 more troops into a useless war.

Today I am more proud of my president than I ever have been about any politician. His decision will save lives... possibly mine.

So, in short- because I don't want to dwell on it;

My test results are in, and I am a lot sicker than originally thought. The evidence of this is showing more and more and really taking a toll on me. I have trouble even walking up or down the stairs lately. I get dizzy for hours a day. The seizures are increasing again, even with the marijuana (dosage will be increased.) I look like I have two black eyes all the time. To clarify- there are four "stages" of my illness- I was in stage 2 a few months ago. I have progressed to stage 3.

This means I need more medical care. I do have a neurologist in Eugene but he has referred me to a department in Portland which is where I will be treated from now on. I will be starting radiation therapy as soon as my immune system is boosted enough to handle it. I will be in regular physical therapy to offshoot the loss of muscle development and the damage done to my body.

So, when our lease on this house is over, in May, we will be moving to Portland, looking for an apartment. The savings from living in an apartment instead of this house will cut our living expenses in half. To make matters a bit more complicated, Alec's clients, because of financial problems have cut back his work to 20% of what it usually is. This means our income is 20% of what it usually is. So we need to downgrade. We have no problem with this aside from it being a pain in the ass.

I have no medical insurance, because no one will insure me. Our projected medical bills are going to be around $5,000 per month.

My darling uncle has stepped in and insisted on taking over the financial responsibility BECAUSE HE IS A GOD DAMNED SAINT and I could not possibly love him more for that. Still, we need to move, and will be looking for a nice but more cost efficient place to live that is closer to my medical caretakers.

Everyone in my house knows the situation now and we are all cool with it. We're going to make sure GalexC gets to where he needs to be too.

So, I am not very familiar with Portland. I would love to meet some friends up there and have some people to chill with.

(after watching Virgin Territory)

AN OPEN LETTER TO TIM ROTH:

Dear Tim (can I call you Tim?)
You are brilliant. Seriously, I think you are one of the most overlooked and talented actors of my generation. That being said, please stop making shit movies. It makes me sad to see you, so talented, and I must admit, weirdly hot, in such pieces of celluloid crap as this film. Now, I think you probably did this movie as a favor to someone. Well, let me say, if you owed anyone a favor, it is well paid after this disaster. Either that, or one of those brainless boobie girls in the movie went to your house and drugged you with roofies and took you to Italy where she held you captive and forced you to make this awful film. The second scenario intrigues me more so let's stick with that. Now, two years later, perhaps some of the shame of violation has washed away and you can forgive that evil tart for slipping you roofies. But you know, you are not completely innocent in this fiasco, because I saw that Tupac Shakur movie you were in. Yeah, I saw it. A couple of other people saw it too, so you should know, there are witnesses. You bad, bad man. Spankings. Now behave.

I have not really written a journal entry in a while. I think because the ease and quickness of Facebook status updates seems to work for the most part in letting people know what I am up to. The deeper stuff gets lost though. So I will ramble, with very little structure or form, and update this journal. Many changes have happened over the last few months. I have been doing a lot of self examination and struggling with concepts I may have that even if they are correct, will hold me back from having a fulfilling life. Dropping these concepts or at least learning to ignore them is difficult and proving to be one of the biggest challenges I have ever faced. Sorry to be vague, but to tell you what these concepts are would seem like a lot of bitching and moaning, and I'm giving up that habit. The biggest emotional challenge is a different one- the idea that I am 32 years old and I am not moving toward what I want to be doing in life... and there is no reason why. I am learning more about myself and discovering that I absolutely cannot stay in one place for more than a couple of years- tops. I am not accustomed to owning furniture- these sofas and picture frames and coffee makers. In the past, my life has been a series of moving to one place after another, and almost everything I owned literally fit into two medium sized suitcases. When I moved from Budapest to the USA, it took me exactly 2 hours and 14 minutes to pack everything I owned- I timed it.

There is comfort in all these things- a sense of stability, and since I tend to be a house-mouse at times, it is nice to have a middle class palace to tinker around in, but the ominous storm hanging over my path is that I have gypsy blood- literally- and I am nomadic. I have apparently chosen a weird (not really difficult- just weird, and maybe difficult for it's weirdness) path in life. I am not having children, by choice. I don't subscribe to traditional concepts of relationship and marriage. I am a Pagan Atheist (I'll explain that sometime) and I have chosen writing as a career I aspire to. To make things just a notch or two stranger- I dress like Stevie Nicks and I talk like Margaret Cho. There is no soft spoken lady-like girl living anywhere in my psyche. I tend to say exactly what I think and because of that, I make friends about as easily as Robinson Crusoe made ice. Balancing all of these aspects of my life has been a challenge and continues to be. In some way, I thought that “settling down� would be the secret. I would be happy if I settled down in a quirky, cute town, had a pretty house and a little studio to glue things to other things in. I could make some local friends, join the local community something or another and bake banana bread on Sundays. Most people would be blissful this way. I feel like I should be blissful this way. It is certainly not that I am unhappy. I am quite happy to totter around the house, stirring soup and doing what I do. The problem is that while I am happy- I am not sure why I am happy. It's lame really, to want... not something more, but something else. But it's true.

The fact is that one of the reasons I chose not to have children (one of many) is that I did not want to be tied down in life. I want to be able to pack a bag at a moment's notice and go to China, move to Peru, live in Prague for a year. What I am doing now (and Alec too) is working just to work. It pays the bills, and pays them well between the two of us- though admittedly my earnings are less than a third of Alec's. But why are we working so hard to have these things if we would be just as happy living in a one bedroom flat? Granted, when we rented this house we had more roommates so the size was more justified, but now... even without the house being an issue, why are we working to work? We are both blessed that we work from home and as long as we have high speed internet access, we have jobs. This means we can live anywhere that has high speed internet access. That is a huge portion of the globe nowadays. Already we have lived in Panama, Prague and Budapest while keeping the same jobs.
(It might interest you to know that all three places have better internet than the USA.)

So why the hell are we “settling down?� Settling for what? We have more freedom of choice than most people in the world, and we are doing what everyone else is doing. Why? The fact is, I can brag. If we wanted to take off and live in France, or Thailand, or Brazil or Scotland, we could. We have before. We have even discussed quite seriously, simply “floating� around the world, a few months here, a few weeks there... everything in a suitcase. Well and fine by me. When I lived in Prague I spent my time studying castle architecture and giving history tours in Old Town. My regular every day life was exploring history, something I feel I was designed for. Now, in an attempt to combat my orphan status, I have tried to “settle� when such a thing, I now realize, is against my nature. Just to clarify- it seems to be against Alec's nature too.

As for other changes, I am returning to my pagan roots after a long period of nothingness. I am still an atheist- always will be- but I feel that celebrating nature and humanism in the form of pagan ritual goes very well with my brand of Paganism, which is semi-Celtic in background, and very flowing.

I am interested in music again, in singing, and in learning to play instruments. I am searching for an instrument that suits me and yet does not hurt my somewhat crippled hands. After a long time of being emotionally asleep, I am starting to feel everything. I am designing, writing, imagining and expanding my mind.

I don't want to be a housewife. I want to be Forest Gump... without the retarded bit.

I have had seizures since I was eleven, and recently I was told by a family member (who neglected to ever mention this before) that I had seizures in infancy- though that may not be related. Regardless, I have temporal lobe epilepsy and I have lived with it my entire life. In that time, I have had many doctors of varying opinions about how to treat my very active epilepsy. There have been times when I have had multiple seizures in a single day. My seizures are a regular occurring thing in my life. Some people only experience a seizure every few years- not me. I have them on average of three times a week, usually when I am waking up. I have been put on every kind of medication the doctors can dispense. At best, a few of the medications have lessened the frequency of the seizures, but nothing has eliminated them, or even given me a level of balance I thought was worth the side effects the meds cause, which are substantial. There are a bunch of other little add on problems (not so little, really) that come along with my particular brand of spazzing- such as insomnia- which sometimes reaches critical levels, like being awake four days at a time... which of course causes more seizures. I find that with me, the medications tend to worsen these issues. Not to mention the meds make me a basketcase, or a zombie. Usually a zombie. There is also depression to deal with. The side effect of being spazzy all the time is (for me) depression. Being a zombie makes that worse. Oh, and the damage the seizures do to my body. I have broken my arm once, fractured ribs, pulled muscles, smacked my head on things, gotten concussions and then the general pain and stiffness of having a body that is regularly tossed around and banged up. I often wake up so sore that it hurts to walk.

So... in September, I decided to go off my prescribed medications and try smoking pot. Nothing else worked, so this seemed a valid thing to do in my opinion. I should also point out that I do not take any recreational drugs- never have. I don't drink. I don't smoke. I don't like the idea of being 'high.' I am not doing this for kicks. So, with that out of the way, I got some weed- lovingly supplied by an awesome friend- and I decided to find out if smoking some regular herb would help my situation.

NOTE: I did NOT do this under the supervision of a doctor.

I keep a calendar that documents my seizures- I have kept it for three years, almost religiously. I used this to track changes in frequency and intensity.

The months of January, February & March I was regularly taking my medication "cocktail" that the doctors prescribed me. During those three months, I had a documented 34 seizures, from which I was hospitalized twice. I sustained a concussion from one and a hairline fracture on my left arm. I spent those three months (very average months) deeply depressed and in a deep amount of physical and emotional pain.

The months of October, November & December, now using marijuana about three days a week (NOT every day), I have had... (drum roll...) TWO seizures. TWO. I had an aura a few other times (an aura is the funky feeling that happens BEFORE a seizure) but smoked some pot and IT WENT AWAY!

For the last three months, I have no new bruises on my body. You know it's a big change when you are undressing to make love to your husband and he says with a look of wonderment,

"Sweetheart, you don't have any bruises now!"

I sleep better. Not great, because my brain still never really shuts up (which is a good thing), but I get a lot more sleep than I used to, and I have certainly not had any four day awake episodes. The depression has lifted a lot, and the ease of not being afraid of my own body has made it much easier to do simple things I could not do before- cook more often, finish projects, work out, go hiking, biking, have sex without worrying I might spaz in the middle of it...

I eat better- because I spend more time cooking and less time crying in pain. And since the pot gives me munchies, I actually eat instead of going all day without eating and then feeling starved and exhausted.

I can enjoy things like going to concerts and shows- not as much as I would like, because flashing lights and loud music are essentially a bad idea for me, but before the pot it was OUT OF THE QUESTION ENTIRELY. I used to have seizures from watching movies in the cinema. Now I go all the time.

The cost- I won't tell you what my monthly supply of weed costs but it is exactly 2% of my total medication cost on the "usual" drugs. I now spend some of the money I used to spend on the "usual" drugs on things like having a life.

I get out more, I have better relationships with my family and friends- simply because I am no longer miserable. I have a better sex life, better goals and projects, many exciting things to do.

SIDE EFFECTS I HAVE EXPERIENCED USING CLONAZAPAM, DEPAKOTE & PHENOBARBITOL:
nausea
vomiting
exhaustion
drowsiness
depression
suicidal thoughts (when I changed meds or stopped taking them)
general befuddlement
inability to do pretty much anything useful
complete absence of any sex drive
PERMANENT DAMAGE TO MY LIVER

SIDE EFFECTS I HAVE EXPERIENCED USING MARIJUANA:
-mild to medium level 'high' (which for me means lessened motor development skills and
my mind taking everything to more levels than when not high)
-a lot of giggling and finding everything funny
-The Flaming Lips now sound even more awesome on my ipod


Now my rhetorical question is... why is it not legal?

The next time you vote, please think of people like me and make it legal.

3:36amLeanna

I was looking through a reference book for fashions from the 30's and this book happened to be a reprint of the Sears catalogue from the 30s...And on one page they had stuff for setting and styling your hair...
and there were these things that served to set waves in ones hair...That seriously looked like medievel turture devices!
torture devices even

3:38amLeanna

they had this metal part that wrapped around the head, and this elastic part that went across the forehead... Seriously WEIRD!

3:39amMaralith

freaky

3:39amLeanna

Those women were SERIOUS about their hair! LOL

3:39amMaralith

and yet if I had one of those, I would SOOO use it to make fingercurls

3:40amLeanna

THAT'S what "I" THOUGHT TOO
there were pictures of these weird curler things too.... And I was like "CURLERS?!" "Those look more like SEX TOYS!" LOL

3:43amMaralith

you know some freak took hot curlers and dildo-fied them

3:44amLeanna

nah, these were metal

3:44amMaralith

...still

3:44amLeanna

well yeah LOL

2 points for random usage of Romano language for no reason other than to show off.

My Roma heritage becomes evident to me fairly regularly, always when I have been in a place only a few months, and I am completely happy there, but dammit if I don't long to be somewhere else... anywhere else. I am really enjoying Eugene, particularly enjoying the vast beauty of Oregon, the friendly people and the ease of life. Here I don't have to struggle with language (unless I am stoned, in which case, I begin speaking Romanian- the gibbery version), English language book stores are easily available, I don't have to guess what kind of meat lays dormant under the cream sauce and everyday chores such as buying groceries and paying the bills do not become hidden challenges that pit me against a culture I am trying to navigate. When I first came back to the States from years in Czech Republic and Hungary, the USA felt new again, and a bit of a challenge. Now, I don't really know what to do with myself.

In Europe, I was constantly busy, if anything just trying to navigate life and make a basic mark kept me plenty occupied and excited. But there is something to being an expat that makes you part of a micro-community, where even if you fail with the native brigade, you have the expat net to fall back on. They'll take anybody, just as long as you still have to point at the menu. I made Czech and Hungarian friends, but not really. When conversation is limited to the basics because of language barrier, it's tough to get close and it takes years to learn those languages fluently. Until then you are stuck asking to see what kinds of cheeses are on sale at the local grocery. Some of my friends spoke the same amount of English as I spoke Czech, which made for interesting conversations:

Me: Do you like this kind of music?
Them: I have a dog named Larry.
Me: You are married?
Them: I would like to go to America someday, yes?
Me: It kinda sucks.
Them: They have Empire State Building and Doritos.
Me: I told you it sucks.

Isolation and depression set in fast. Still, I could cope with it. Other people cope I imagine with their families; their sons and daughters, sisters and brothers, parents that send pastel greeting cards. I don't have that net to fall back on. I have been on my own since my teens. I don't get birthday cards or "get well soon" notes. There is no MOM/ATM to turn to if I am in a pinch. It is not a complaint, just a reason I get weird from time to time.

So now, settling in Eugene, Oregon, I feel a bit odd. I am trying to focus on my writing and get something done and it just won't come.
It's too... quiet. I don't mean quiet from sound, but quiet from struggle. What happened today? NOTHING happened today. It's boredom. It's soccor-momdom. I somehow feel like an exciting era of my life is over and I cannot get it back. I'm whining. I don;t want to sound like I am whining. Whaaa.

Well, I can always fall back on rock and roll.