20 Minutes

Living life twenty minutes per day. If you had twenty minutes of useable brain time in a day, what would you do with it? I apparently spend a lot of it blogging.

I was getting to a point where I was thinking I have to accept that I'm not functional and have to apply for disability. But now I'm back to thinking, oh, maybe tomorrow, I'll be able to do some work again. The fact that I have this dilemma at all at this point is because my boss is one of the most amazing people.

Shades and colors of people show themselves even more distinctly during troubled times. The people with the most love for people, are also the ones with the most faith (in God and in people), and peace, and happiness.

Except that my mom says that a truly caring, good, and smart person can't really be happy. Because there is suffering in the world.

Well, let's see about tomorrow.

Asneezia

After that flu I had in April, which I now believe was the Lyme flu, my spring allergies suddenly and mysteriously disappeared. I had just stocked up on Claritin to last through June, since I normally sneeze nonstop from February through June, literally. And I normally sneeze every day even in non-allergy season. Also, for the record, after the flu, I started getting a slimy oily face that would almost drip if I don't wash it every opportunity.

Not until I sneezed one day, sometime around October, did I realize I hadn't sneezed at all since April. And then, when I was taking Risperdal for psychotic-ness related to seizures, I started sneezing more. And my face was less oily for that duration.

Well, I miss my sneezing. I like sneezing. Sneezing is a sign of good health. They've connected allergies with traits like being left-handed, premature, good at math, smart, and okay, I might be making some of this up. It reduced my productivity during allergy season to 25% for the 75% sneezing and recovering in bed, but if the allergy trait made me 500% productive overall, I still came out ahead....

Apparently, people who are schizophrenic don't sneeze much:

A blow from the east - research in India on inability to sneeze, asneezia

Having Faith

I've been contemplating whether it's possible for someone like me to ever believe in a faith like Christianity. In college, when the "Asian Christians" tried to "convert" me, I could never get past the idea that there is one Truth and one true religion.

So how can one be Christian yet retain cultures that have Buddhism, ancestor worship, and other forms of worship woven into them? You could reduce Buddhism to a philosophy. But then what are you actually doing when you meditate and pray? And what about the kitchen god in every Chinese restaurant, and Kuan Yin, and whatever other gods and goddesses I don't know about?

***

My friend who referred me to her long-time doctor, questioned now whether his niceness is genuine. That's true, one can be very nice, do one's duty and job, act caring, yet not really be genuine if one doesn't have faith to believe the people one is caring for.

It is very difficult to understand or believe illnesses such as this without experiencing it oneself. I suppose that is where the leap of faith comes in.

Believing People

I'm not one to usually believe in conspiracy theories, but this one is rather believable:

Plum Island: Biowarfare Laboratory?

Lyme Disease is a Biowarfare Issue

Let's take a look at this map of reported cases from the CDC. Where do you think Plum Island is located? In the middle of that dense semicircle in New England. And let's compare this 2004 map with one from 1999. The semicircle expands. As does a strange cluster around Minnesota. Now if the disease has really been around for a longer time, and if the increase in reported cases were simply due to increased awareness and diagnosis, one would expect the case map to just get evenly denser everywhere, instead of expanding outwards from the original source. I wonder if birds migrate from New England to Minnesota. There are even more interesting articles out there, and even more interesting when you start reading up on Gulf War Illness.

Another thing is, if the disease had really been around long before it was discovered in Lyme, CT, there would be written record of it. People on the Oregon Trail and Little House on the Prairie who spent all day in the grass would have gotten it. There is plenty written about dysentery and consumption, but nothing that sounds like Lyme disease.

But what to do about it? We just need to figure out how to heal all the sick and disabled people, and prevent more from occurring. An epidemic like this could really disable a nation, maybe even a species. The CDC gets more than 20,000 reported cases every year and this number is increasing over time (double that of ten years ago), but even itself says that it estimates there are 10 times that number that occur. That would be 1 in 1500 people every year. Over a lifetime, that would be 1 in 20 people, at the current rate. Since the disease was only discovered 30 years ago, it still appears to be rare. But the math is warning.

Still Dreaming

My doctor asked me how was my weekend. The asking of these questions makes me realize how difficult it is to comprehend what incapacitating fatigue is. I'll keep explaining that for the last almost six months, I've just been trying to eat and shower every day, and maybe little by little he'll understand some more. I described a little more, saying getting out to each doctor's appointment is like running a marathon, and oftentimes I crash for two days afterwards, hardly able to get out of bed. He was probably a little surprised, and responded that he didn't know that. It's something so unimaginable unless you experience it yourself. Even my best friend, a writer and a poet who is among the most imaginative and open-minded of people, probably can't even imagine fully what this is like.

He listens but doesn't really say anything in response when I say things like, however controversial the long-term Lyme treatment is, and whatever anybody thinks about it, the thing is, the Lyme specialists have experience treating thousands of patients with the collective symptoms that I have, and most of them get better. But he seems to think I'm at least somewhat sensible. And sometimes amusing because I tend not to censor anything I say.

A good doctor should recognize his own limits, when he doesn't know how to provide the best treatment for his patients. There's a line between wanting to help the patient oneself and caring enough to help find the best treatment.

I asked if he had ever had any patients with chronic fatigue. He said only one or two, and they went on to see other specialists when he couldn't do more for them, and were lost to follow-up. In that conversation, I blurted out something that made me realize that in the doctor-patient relationship, there can be a difference between trusting the doctor's treatment and trusting the person.

***

As I was turning thirty, I of course looked up "turning 30" on Google, and liked this page:

Turning 30

There is a quote that says, "If your memories exceed your dreams, the end is near." I was always dreaming before this. Sometimes I try to feel better by thinking about happy memories. But when the memories get further and further away, it's sad. At thirty, a person should still have a lot of dreams. As people age, with children, they can continue dreaming for their children.

So, we still need to dream.

I also liked the quote, "If at age 20 you are not a Communist then you have no heart. If at age 30 you are not a Capitalist then you have no brains." Hehe, so true.

Witch-hunting Psychos

I've come across several doctors who think they know it all and once they find out you are from a high-achieving family, especially an Asian-American family, they attribute all of your symptoms to that, including things like arthritis. It's especially annoying coming from white male doctors who the less they know about something (like Asian-Americans) the more they speak with firm conclusion. The logic here is totally the opposite of logic. One would have to assume that high achievement only comes about if there is a tremendous amount of pressure and stress, as if humans are naturally mediocre.

Actually, high achievers are usually high achievers because things come easy to them. In order to achieve less, oftentimes it would actually take more effort to not do what they can do. In addition, high achievers probably feel good about themselves. And really, who has more stress in the world, someone who is high-achieving or someone who is mediocre, competing for the same things?

***

I took a neuropsychiatric test a few months ago. As an example of how useless (and even harmful) they can be, one of my highest marks was histrionic. I picture someone flaunting their boobs popping out. Has anyone ever seen me with mine popping out (aside from a near mishap during Viennese Ball Opening Committee...)?

And the best part of the neuropsychiatric testing is the logic used when a patient disagrees with the assessment and denies having a problem attributed to them. Pretty much, denial is further evidence of the problem and consistent with the psychological theory. And more evidence of repressed emotions.

Well, gee, those kinds of theories always win! How clever. Whether a person proclaims innocence or guilt, they are guilty. And claiming innocence is further evidence of guilt. Also, everybody must have every infinite repressed emotion, since by definition they're repressed and hiding, some of them very very much. So it's useless to deny having repressed emotions since you can't prove that you don't have them.

And what if you take the test when you actually do have a physical thing causing physical pain? Like arthritis, or a broken leg. You'd be labelled psychosomatic for answers to all the pain questions.

Writers with Lyme Disease

Every time I start or stop taking a drug, my mom immediately notices something and says that I look a little better. This is without her knowing what drug regimen changes I'm doing. Well, it does seem like my brain connections are doing a little better the last few days. Of course, I wonder what taking a drug for schizophrenia and bipolar disorder does to you if you don't have either. It would sort of make sense that when withdrawing from the drug, one might develop some of those characteristics.

Here are three authors who have Lyme disease to varying degrees. It's nice that as famous writers, they can do a better job of publicizing their experiences. At the same time, what male doctor is going to believe what a female writer talks about? Since, all women are crazy and illogical, and especially women writers, they're all depressed and even more illogical.

Note, vile old infectious disease specialist in Los Gatos, whose medical history taking included the question, "Have you heard of Amy Tan?", and lots of smirking and snarfing when he asked more irrelevant questions like where I went to college, what major, where did my siblings go to college, etc. Stanford. Smirk. Harvard. Snort. Yep, that's the reason I'm sick, because my sister went to Harvard, and we're a crazy Asian-American family. Maybe we should feel sorry that the old guy is so unhappy.

Amy Tan

Meg Cabot

Rebecca Wells

There are similarities that are so unusual. Ms. Wells says in her FAQ that she was only able to write for twenty minutes and always at night. Sounds like my blogging....

It does seem like one thing people are still able to do while having Lyme disease is write. Although I do remember reading one or two of Amy Tan's novels several years ago and wondering if she was on crack.

Ability to Change

My doctor called today to check how I was doing on the Lexapro. Well, there were so many side effects from just a half pill, I didn't even describe them all over the phone because it would have taken too long. I mentioned there were other things I needed to think and decide about regarding treatment. Which happens to be the stuff that I'm not sure he even believes is possible. I still get the feeling that he thinks it's all simply due to stress (wow, I can't even imagine the kind of stress it would take to incapacitate a person to this degree) and that some anti-depressant and psychotherapy is going to make all the symptoms magically disappear. He said I could come in on Monday and he blocked off an hour for me so we could talk. That's pretty generous, but I wonder if he's going to charge the insurance company double time.

Maybe the Seroquel is doing something, because I was able to talk on the phone and even compose an e-mail before nightfall and feel like my brain was actually working somewhat.

I'm not sure why so far I still like being his patient, since he might not even believe what's ailing me. Last time, he just said, "I don't know." I don't know if that was a real "I don't know" or a not saying what he's thinking "I don't know."

It's admirable when people can change their own set beliefs and the way they think. This rarely happens. One time I changed my beliefs was changing the way I thought about homosexuality. But that change occurred when I was relatively young, and I was really just shifting from what my parents said to making my own thinking.

Maybe I'm hoping this is a doctor who might be able to change his mind.

Some people can be open-minded and smart enough to change their own thinking. There are also people who are adept at helping to change other people. My best friend is like that. I'm probably a lot more of an open-minded person since meeting her in the sixth grade.

Speaking of which, last night, I composed a poem in my dream. But I can't remember any of it now. At the time, I was quite impressed by my subconscious creative writing skills, never before seen. My friend says she writes poetry in her mind as she's falling asleep. Now if she starts solving math puzzles while sleeping, that will be something.

It must be the brain drugs, along with whatever's imbalancing my body. It seems like brain chemistry shifts the balance of the brain between "fuzzy" and "techie".

Mind Germs

I just did about a half hour of work, which is basically enough time to skim through e-mail, and remember how to navigate stuff in Unix. That is an improvement from zero. Maybe the Seroquel I took last night helped. It's an anti-psychotic medication used to treat bipolar and schizophrenia, but also used for its side effect of somnolence to help people sleep.

There has been research showing that some anti-psychotic medications also have anti-viral properties. So perhaps they treat schizophrenia in part because of the anti-viral properties.

In my previous post, research on chronic fatigue is showing that at least some cases are caused by viruses. But it will be a while before old squareheads in the medical community open their minds. Actually the old squareheads will not open their minds, especially as they get older; it will take a generational change.

Many illnesses are caused by germs, including mental illnesses:

Mind Germs, Part 2

Do viruses serve any beneficial purpose in the world? At least for bacteria, some of them do, like for making yogurt, cheese, and populating the digestive tract. But then again, harmful bacteria don't seem to serve any purpose either.

What Life to Live?

Maybe since these articles cite examples of chronic fatigue sufferers who are white male business executives, they might carry a little more weight among skeptics.

Chronic fatigue drug in trial stage

New therapy for chronic fatigue syndrome to be tested at Stanford

Take a toxic carcinogenic antiviral for six months to possibly be made well, or plug on with the long-term Lyme treatment which is not exactly nontoxic either and has somewhat unknown prognosis. I feel unable to make such decisions.

After six months of being bed-bound, room-bound, house-bound, normal life can seem totally surreal. Like, wow, did I really drive all around the Bay Area to go dancing, eating, working, etc? Can I imagine being able to do normal things again and being able to take care of myself?

Blogging is currently the extent of my brain activity. Today I managed to drive the two miles to the drugstore to pick up some medicine, and walk around the store a little, only feeling mildly to moderately foggy, dizzy, woozy, tired, cloudy.

More Brain Drugs

Chemicals push buttons on the brain. Maybe Lexapro is serotonin poisoning to someone who perhaps doesn't have too little serotonin. One half-dose apparently made my muscles twitch every few seconds all day, brought back mini-seizures, and warped my mind. I was agitated and felt like I couldn't sit still for more than five minutes, yet at the same time it didn't help the fatigue but being agitated and twitching all day makes fatigue even worse, so I was crawling back to bed after five minutes up. I got the urge to look up how people overdose on drugs, a thought that has never crossed my mind before, but luckily my brain had enough unwarped brain cells left to make myself not do that. Then I briefly got thet sensation that I was floating out of my body thinking of myself as a third person. It apparently had no effect on the depression/happiness dimension.

That was a nasty experiment. Wonder what my doctor will offer up next. Maybe just maybe fatigue is not the same as depression. Diet and exercise are probably better than brain drugs in most cases for depression. A friend gets cravings for beer and dark chocolate when she gets her monthly depression. Apparently it works. Really really dark chocolate.

Sometimes I get a craving for Martinelli's sparkling apple juice when my brain is feeling warped lately. A Google search on apples and health says that apples contain lots of stuff good for the brain. Maybe I had such a healthy brain until last year because I drank so much TreeTop apple juice as a kid. Really, several times a day.

Brain Drugs

With my recent increased unhiding of my blog, though not deanonymized, I wonder if I should go back and check all my prior posts for anything inappropriate. Well, if it's so secret, then why is it in a public blog? I don't know, there's something about keeping a journal for the self yet sharing it with anyone who wants to read it. Keeping it anonymous probably doesn't work either, since there has been at least one person who has come up to me and said, "Hey, I found your blog!" Googling dance topics of course.

Whether or not to share with coworkers is another question. That, I haven't come to any conclusion on yet, but I wouldn't be surprised if some of them already found it, since I have left links around from other pages temporarily in the past.

Well, earlier this week, I was even less functional. Maybe it was the SAM-e supplement I tried, which left me a total zombie the next day and lingering effects for several more days. Not like the "zombie" people use casually to describe being spaced out, but like literally staring at the same spot in front of me for half an hour and not realizing it for half an hour, and this occurring for the whole day.

So if it's supposed to be like an anti-depressant, I wonder what the Lexapro will do. I finally called my doctor and said I was willing to try it. Still doubtful, but at this point, I'm willing to try almost anything. He asked me if I was going to do anything special this weekend like hang out or something. I was thinking, where has he been? Um, I've been saying that I have trouble just sitting up long enough to eat lunch, and barely get through eating and showering each day. I don't know of anyone who has been that depressed that they are really physically incapacitated to this degree. I told the doctor I didn't feel depressed, at least not very. He said it didn't matter. If anything is making me depressed, it's the fact that I can barely eat and shower. So, chicken, egg? And maybe doctors should think more when a patient complains of physical symptoms.

Since weaning off the Clonazepam, I actually don't feel as depressed, and have less of the "I'm in a war zone" waves going through my body. I think that was actually making me feel suicidal. I never thought I'd ever have that experience of feeling in my life. In response to my concerns about anti-depressants causing suicidal tendencies, the doctor said, well, Clonazepam can make one suicidal too. Well, I guess he's right! Anyway, I seem to have gotten through the seizure-like activity, though occasionally bright lights and loud phone rings make my muscles twitch.

Mobic samples helped with the joint and muscle pain, and eased some of the muscle spasms, which eased some of the feelings of "anxiety". I think skeletal-muscular disorders can lead to psychiatric symptoms, and vice-versa. I can't remember the researcher and author of a book on Emotions that we were supposed to get from my sophomore seminar on the psychology of emotions. But basically, physically making an expression and innervating those muscles can cause one to feel the emotion associated with it.

On the other hand, I remember after the first Waltz Week, I was feeling like I was waltzing on happy drugs for literally the entire six months afterwards, even more than usual. Not that I needed happy drugs before.

30th Birthday

I didn't let candles on the cake to avoid blowing any possible germs on it, so I didn't think about making a birthday wish. Let me think about that now.... Some people's first inclination is to wish something for themselves, and some people's is to wish for others. I'm working on it. But what do you do when it's not natural? And how about more than one wish?

I really have wished for things like world peace before, but this year I really do wish something for myself. It's not entirely selfish either, since I don't want to be a burden on anyone, and would like to be able to contribute something to the world. But what I wish for myself is really the same as what I wish for others.

So I had my first real visitors today, somewhat of a surprisingly larger group of people than expected. But I didn't allow any hugs, and was concerned about touching the things we were using to eat with. I haven't seen people in half a year. But I've been too sick to mind. Oddly, I don't look that sick between the hours of 6pm - midnight, more or less.

The new French date apparently had Lyme disease when he was a kid in France, but apparently a mild case.

In other news, everyone is buying a house and moving to San Mateo County. Location, location, location! It's the center of the Bay Area. This is the era of the young power couples with a surprising lot of income or creative financing.

Time

Things don't always turn out the way you imagine. This is not how I imagined leaving the twenties behind. However, most of the twenties was quite good. It seems like only yesterday that we were 25, and Heather and I were sharing a beautiful Zen-like apartment at Oak Creek. That was a fun year, full of parties and meeting people, and everyone was a young twenty-something single. 25 to 30 goes by in a flash. Seems faster than a single year in college. At 25, you still feel like you have all the time in the world and 30 seems quite far away. Only when you're 29, you realize you're almost 30. If time is always speeding up like this, well... before we know it, gosh...

Half a year of my life has gone to sickness. A half a year for which I had many plans. Learning Chinese, and imagining getting a job in China while still young. (But now imagining, what would I do half a world away by myself in a strange zooming city.) Learning Java and other software engineering skills, and progressing my career. Hanging out at the new San Mateo Library with a cafe, across from Heather's apartment, being intellectual, and trying to meet other like-minded intellectual singles, guys especially. Dancing, tai chi, running, becoming more physically fit. Learning to cook, and become a girl, ie. learn how to dress myself. What else...

Now I have to figure out how to work with what I have. I have a few hours per day of being semi-functional and up. It takes me months to sort through my mail and figure out my bills, I can't seem to figure out how to clean my room and organize things, I can't seem to figure out technical things I used to do in my job even when I'm able to sit up and be awake, I get lost in the doctors' office, and everything seems foggy. But the communication portion of my brain seems to be working well enough. (Which also makes it difficult for other people to understand how I'm retarded and non-functional in other ways since I can converse, read, and write fine... although I did have problems with that too some time ago.) What would I do with communications for a living, the last skill I imagined using for a job?

But first, I just need to be functional. Feeling like I just need someone to take care of me. What's it like to be so fatigued that even when you're lying in bed, the fatigue is painful? And even if I were starving, I would have major difficulty getting up or out to get food to eat. And after food, you realize you need things like toilet paper.... And after all of this, I realize how important it is to have social welfare services for those in need.

My mom got me to get my hair cut at a salon/spa today. Having someone work through my hair and kind of give the scalp and neck a mini-massage made me feel a bit better. Wouldn't it be nice to be a Hillsborough wife and go to a spa every week?

Well, I guess people older than you are will always say that you're young.

If I were well, I'd probably be at Friday Night Waltz tonight, waltzing at midnight to welcome 30. But I'll have to dance in my mind. Here's one of my favorite waltzes:

Time, by Chantal Kreviazuk

Time, where did you go?
Why did you leave me here alone?
Wait, don't go so fast
I'm missing the moments as they pass
Now I've looked in the mirror and the worlds getting clearer
So wait for me this time
I'm down I'm down on my knees I'm begging for all your sympathy
But you (I'm just an illusion) you don't seem to care (I wish that I could)
You humble people everywhere (I don't mean to hurt you)
Now I've looked in the mirror and the worlds getting clearer
I'll take what you give me. Please know that I'm learning
So wait for me this time
I should've know better
I shouldn't have wasted those days
And afternoons and mornings
I threw them all away
Now this is my time
I'm going to make this moment mine.
(I shouldn't have wasted those days)
I'll take what you give me. Please know that I'm learning
I've looked in the mirror
My world's getting clearer
So wait for me this time

This Too Shall Pass

There were a bunch of nice people waiting in the doctor's office, a long wait. A son taking care of his mom. Two old couples. One young man was a bit fidgety, commented the nice white-haired lady beside him after he went in for his appointment. In reference to the long wait, she said "this too shall pass." It struck me as an interesting thing to say, a bit serious for something as small as waiting in a doctor's office. But probably she wasn't just referring to that.

I notice a trend. He and the PCP both have Monet and lily paintings in their offices. (Another doctor has a painting in his office with the title or inscription "games we play," which is interesting....) The older man across from me told me how nice the doctor is. As I left the office, he said "good luck to you." I guess I didn't look so well.

The doctor elicited a lot of information from me although I was only going to see him for a bump on my mouth. As I was leaving, he asked how many hours I worked. So I answered normally 40 or at least 40, but that I hadn't been able to work lately because I've been so sick with fatigue. He happened to ask me if I'd been tested for Epstein-Barr virus, so I told him about the visit to Stanford infectious disease clinic, the herpes viruses testing, and HHV-6.

And then sometime before I left, he said "this too shall pass." I was kind of tired and staring blankly at the time. Only while eating dinner did I think about how interesting it was that two people had said the same phrase to me today, and I don't recall another time I've heard it. So of course, I have to look it up with Google. Apparently this is a Hebrew phrase from this story,

This too shall pass.

I don't know if the lady is Jewish, but the doctor is, since according to the lookup info he speaks Hebrew.

He commented that I had seen a few very good doctors, the PCP and the dermatologist.

Yes, everything in life is fleeting. Most needed when it involves suffering.

Strange coincidences like this make me wonder sometimes if I'm hallucinating everything. Like in "A Beautiful Mind", which I never saw but read a synopsis.

New Year

I might be suffering quite a bit, but there are worse possibilities, and when you think of those, you think that maybe you're not really suffering that much, and you realize there's still a lot to be thankful for. Simply having a warm bed and food is good. And people capable of taking care of the sick. Being able to eat, shower, talk, read, write (type), is a blessing already, even if only for a few hours per day.

There are too many weird and scary diseases out there. This experience along with its mind-altering nature has made me worry too much about all the possibilities. Let's have a new year free of unecessary and harmful worrying. Appreciate what you have today.

Now we interrupt this post because I just ate part of a caterpillar. A mummified one. My dad brought home some Chinese medicine my aunt suggested, called "winter worm, summer grass." He thought it was a plant with a root that just looks very much like a caterpillar. I drank the chicken soup and looked at the worm grass. Cooked in the soup, not dried anymore, it looked even more like a juicy caterpillar, with a fungus-like strand of grass on the end. But I assumed it was a funny root, not unlike ginseng. Funny how I decided to look it up on Google after I had taken a bite, noting jokingly (but really) that it was kind of squishy chewy like a caterpillar might be. Apparently, it is a fungus-mummified caterpillar that grows in places like Tibet. Hm, yum.

Let's see if the medicine has any effect tomorrow.