for religion I tend to check "other" and write in "newtonian"

In two weeks I'll be 29.

I remember scoffing when my undergrad adviser told me life didn't even begin to make sense til you turn 30. now I totally get what he meant.

karma is nothing more than Newton's 3rd law.

there doesn't have to be some great moral or spiritual breakthrough where I have a marvelous epiphany and then everything stops hurting and baby Jesus soars off with my heavy burdens.

just like there isn't a miracle cure for my fibro. there's x amount of things I can do that all contribute in a small way, but on the whole I am accepting that my life is going to be grueling for whatever's left of it and the important thing is for me to feel like I matter.

28 has gone by really fast. I went home for xmas, to Columbus for New Year's, got off some meds, watched Rosie die, got off some more meds, had surgery, started school. somewhere in there I learned a whole hell of a lot about what love really is.

I learned that I can't push myself all the way to my limits because my brakes aren't good enough to stop me right there at the end of my energy... I have to cut myself off BEFORE I am exhausted. physically or emotionally.

I'm learning to recognize how dangerous my "little sister syndrome" is- my need to be as tough and strong as everyone around me, even when they are healthy, strong neurotypicals. it's ridiculous. I'm frakking tough as hell. I don't need to prove anything.

I'm realizing that I have an aversion to studying for anatomy because I associate muscles and tendons with surgery- more pain. I am not entirely sure how to break this conditioning.

most of all, I am finally able to enjoy solitude again. I had way too much of it for a time, but now it's precious.

still.

it would be so nice

I think I've gotten closer to finding the right balance of supplement but gods what an obscene amount of pills.

600 mg 5 htp at bedtime for serotonin.
100 mg theanine 2x a day for dopamine/GABA. (just got this today and I'm pretty optimistic. seems to help with the pain and brain fog.)
100 mg coQ10 in the am to help form ATP.
6000 mg fish oil divided into am/pm doses for insomnia, depression, dry skin, memory, etc etc etc.
2.5 mg Marinol (thc) 2x a day for pain and appetite.

plus a mineral supplement that is 4 horse-pills, plus Emergen-Cs, plus liquid chlorophyll.


hopefully this will help keep me functioning, as long as my dad is willing to pay for it all. shit ain't cheap.

Poem for Monday, November 17, 2008

It is That Dream

by Olav H. Hauge

It's that dream we carry with us
That something wonderful will happen,
That it has to happen,
That time will open,
That the heart will open,
That doors will open,
That the mountains will open,
That wells will leap up,
That the dream will open,
That one morning we'll slip in
To a harbor that we've never known.

Burke's Book Store
936 South Cooper
Memphis, TN 38104
(901) 278-7484
www.burkesbooks.com

time spent in the shadow of the thing too big to see, rising.

'm a big fan of David Foster Wallace, have been since I was 19 and read Infinite Jest in my dorm room bunkbed with a flashlight. I was really sad to hear how miserable he was the last year of his life. none of the meds worked for him, even the one he had been on for years. having been through a major clinical depression and now living with unending pain, I can only empathize with him.

I hope that if my illness ever gets to where nothing works to alleviate my pain and it's unbearable, the people who love me will let me go.

this is worth reading if you have read anything he wrote.

http://www.rollingstone.com/news/story/23638511/the_lost_years__last_days_of_david_foster_wallace#

but the drugs don't work; they just make you worse

the hardest part in dealing with this pain is knowing that there is absolutely nothing i can do to make it stop. except weep and endure.

days like this i don't think i'd turn down junk if it were made available.

Poem for Monday, November 10, 2008

Who Knows What is Going On

by Juan Ramon Jimenez

Who knows what is going on on the other side of each hour?

How many times the sunrise was
there, behind a mountain!

How many times the brilliant cloud piling up far off
was already a golden body full of thunder!

This rose was poison.

That sword gave life.

I was thinking of a flowery meadow
at the end of a road,
and found myself in the slough.

I was thinking about the greatness of what was human,
and found myself in the divine.

Burke's Book Store
936 South Cooper
Memphis, TN 38104
(901) 278-7484
www.burkesbooks.com

every year I go through a phase of denial about how badly the winter weather affects my health.

my pain levels have been around 8/10 for a week or so now and I've been having a hard time sleeping. the wind is about 25 mph most days so biking kicks my ass. I got a new cog for my back wheel so I'll be in an easier gear, and I'm hoping that will help. I have to accept that I am pretty much going to feel awful all the time no matter what and try to keep on.

I'm having a hard time getting any studying done because of my health. the pain seems to trigger the fight or flight mechanism in my brain so I have to battle a constant feeling of panic. zen meditation. I'm very intimidated by my 30 hour week schedule next semester. I'm sure I'll end up dropping something. I have to be patient with myself. accept my limits.

I know part of why I feel so shitty is from pushing myself too hard.

I feel like I am covered in 2nd degree burns from the waist down from being on my feet for a few hours yesterday. the SOFA art thingy was lovely but I ended up pretty disheartened by how exhausted and pain-stricken I was by the end of it. mermaid feet for sure.


dating seems to be working pretty well. it's hard for me to accept that someone would want to be around me when I am not feeling well. I have a hard time balancing out my sickness with the rest of me, which is in fact pretty awesome. it's been so wonderful to have company on my Bad Days, though. mostly I just have to focus on now, instead of on future endings.

I seem to have stopped thinking of myself as crazy about 2 months ago. it just ceased to be part of who I am. Now I'm just someone who is trying really really hard despite feeling like she's being burned alive.

a good friend from back home has a film at the Reeling festival and invited me to go see it. I'm excited, although a little afraid of homesickness.

a month left til my birthday.

yes, we DID!!!!!

4 years ago I woke up, voted, packed a bag, and checked myself into the state mental institute. The triage unit for mental health at the Med is small, cramped, and very cold, and once you enter you can't leave. I spent about 20 hours locked up with Memphis's sickest folks, watching the states turn red and feeling very lost and very broken.

Despite Obama's lead in the polls I don't have much hope that he'll actually win. The Republican war machine has its rusty claws way too deep in our country to be extricated with just an election. It's going to be rigged just like the last two.

I hope there are no riots.

Poem for Monday, October 27, 2009

Waking

by Roger Sauls

I couldn't see the nuthatch
or the wren as they raked alphabets
on the dull tin of the gutter.
This early, waking is a kind of weather,
a fog, perhaps, that you meet
on the way to the mind's next landscape.
So I set out for the yard, where grackles
threw pebbles in the air for joy.

Burke's Book Store
936 South Cooper
Memphis, TN 38104
(901) 278-7484
www.burkesbooks.com

I have been struggling (as always) with feeling extremely run-down this past week. the wind has picked up considerably (between 10-25 mph) this past week and I've been having a lot of of pain in my chest from riding without enough layers. I've skipped the Zen temple for several weeks in a row and have suffered emotionally as a result. I try to meditate at home but I'm pretty lazy. I know if I want to keep functioning and not let stress send my body into a static feedback crash I have to make time to take care of myself, whether it be a 10 minute sit, an hour walk, or a trip to the library.

today it was a trip to the amazing, ginourmous, better-than-church downtown library. got a few books, one of which I am quite excited about.

I'm about two chapters into All in My Head, writer Paula Kamen's fantastic book about her battle with chronic headaches as well as that of others. So far it's a thoroughly well-written and researched read. it's inspiring for when I ever get around to writing my fibro book.

on her site there are a decent set of links, mainly dealing with headache. there's a very, very well-done list of Dos and Don'ts for relating to someone with Chronic Fatigue that made me want to cry and pump my fist in the air and then send it to everyone I know.

For example:

DON'T suggest that my symptoms might not be so severe if I didn't dwell on them, cater to them, give them so much attention, let them run my life. In fact, that is the very philosophy that led to the collapse of my health in the first place. I maintain what vitality I do have by careful attention to even small changes in my body.

DON'T suggest new supplements or treatments unless I have asked. Like most single dykes with the disease, I have experienced a drastic and terrifying reduction of resources. And like most women living on very low fixed income, I have had to evolve a highly refined and customized process for cost-benefit analysis. It has taken me years to fine-tune my regimen of supplements and foods. Yes, I am sure I would benefit from massage, blood tests, medical care, organic food, acupuncture, and chinese herbs, but I can't afford them. Unless, of course, you want to buy them for me. Classism and ableism go hand-in-glove, and in case you don't know, health care in this country is a privilege, not a right.

really effing brilliant. I've had so many well-meaning people tell me about some miraculous supplement that cured someone they know and it's getting harder and harder not to take offence. thanks, but when my life is a choice between eating enough to keep my weight up and taking yet another supplement, I'm going with food.

I've started taking St John's wort again in addition to 5-htp, what with the winter breathing down my neck already. I've been having bad bouts of depression at more or less the same time every day, the early afternoon. it's hard not to let it suck me in. getting my blood flowing helps, as does chocolate. it certainly does feel like a dementor attack...

time to watch Lost until I'm ready for sleep.

oh and

my bloodwork all came back negative. my doctor wants me to eat 3000 calories a day and if I can't gain a pound a week, come back in a month or so for more tests.

still feel pukey a LOT of the time. still having thumpy heart and tight chest. still having trouble sleeping.

but I'm not dying any time soon.

good lord willing and the creek don't rise.

ned called me "hipster bait"

"if i wanted to catch a hipster guy, i would put you in a cage with some marquez and a gameboy and come back later in the day with like 12 skinny jeans boys all crammed in there."

Poem for Monday, October 20, 2008

Waiting on Elvis, 1956

by Joyce Carol Oates

This place up in Charlotte called Chuck's where I

used to waitress and who came in one night

but Elvis and some of his friends before his concert

at the Arena, I was twenty-six married but still

waiting tables and we got to joking around like you

do, and he was fingering the lace edge of my slip

where it showed below my hemline and I hadn't even

seen it and I slapped at him a little saying, You

sure are the one aren't you feeling my face burn but

he was the kind of boy even meanness turned sweet in

his mouth.

Smiled at me and said, Yeah honey I guess I sure am.

Burke's Book Store
936 South Cooper
Memphis, TN 38104
(901) 278-7484
www.burkesbooks.com

props

I forget to give myself credit.

I've been through a lot this past year and still managed to keep my self-destructive behavior in check. I was having a rough time for a couple weeks, and despite the fact that inside my mind and body was not a fun place to be, I still managed to take refuge in things that keep me safe. Meditating, biking, reading, watching Lost; I haven't gotten wasted or used someone else's body as a means to escape mine in more than half a year. which is definitely a new record for me.

I seem to have accepted the fact that my physical condition might never improve much more. it's a hard and bitter pill to swallow, and I sure do get dose after dose of it multiple times a day, but I am being brave. I am strong. I might cry a lot, but I'm nota drug addict. Every other person with chronic pain I've met was an oxycodone addict, but I want to have a life, and being on pain meds is a dead-end street. Hell, it's a Thelma and Louise style full on acceleration towards a cliff.

Lately, when my physical state becomes overwhelming, I try to tell myself "this is just one more thing you will be good at treating."

it helps.


but I sure as hell can't sleep for shit lately.

Poem for Monday, October 13, 2008

If the Moon Happened Once

by Kay Ryan

If the moon happened once,

it wouldn't matter much,

would it?

One evening's ticket

punched with a

round or a crescent.

You could like it

or not like it,

as you chose.

It couldn't alter

every time it rose;

it couldn't do those

things with scarves

it does.

Burke's Book Store
936 South Cooper
Memphis, TN 38104
(901) 278-7484
www.burkesbooks.com

the waiting is the hardest part

I've been steadily losing weight for a while now, way past what I put on drinking and taking meds, I'm down to 112, which is what I weighed in, um, 9th grade?

during my acupuncture treatment Friday my intern told me the clinic supervisor insisted that I go see a physician to get checked out. I looked at her and said "what could it be?" she shrugged and said "glands? cancer?"

so of course I've been totally freaking out for the past couple days, more than usual.

I'm fairly certain I have hyperthyroidism, because my grandmother had thyroid disease and I seem to have inherited a lot of her health problems, and because I have all the main symptoms. unexplained weight loss, nausea, hot flashes, heart palpitations, elevated pulse, joint pain, diarrhea, yeah... fun.

if that IS what I have, I'm still sticking with Chinese medicine and nutrition, because the western treatments involve burning out your thyroid permanently via injection of radioactive iodine or else taking medications that kill all your white blood cells.

I'm really, really scared. I have no fat left on my body and I feel very, very fragile. It is painful for me to sit on most furniture and my bedsprings poke me through the mattress pad so I wake up feeling bruised. I've been crying for three days. it's so scary not to know what is wrong and to feel so horrible.

and to go through this alone, without a close friend to cry on, with no-one to go to for comfort, it's almost unbearable.

all I can do is keep breathing.

I get my blood tested Wednesday.

profile

I'm really good at writing personal ads and filling out online profiles. it's so easy to summarize myself in a handful of snappy lines. I ride my bike I like to cook I have various geek/literary themed tattoos I am hella wicked smart I read a lot I don't drink I don't smoke I like Battlestar Galactica.

when I write it all out I think I come across pretty well. I sound downright awesome. hell, I totally fracking rule. so why am I still so sad?

I know I am pretty and smart and funny and caring. I try to balance all this out with the feeling of worthlessness I have left over from my adolescent traumas and from dealing with my sickness.

7 months of menstrual suppression and I have morbid PMS. I'm inexplicably sad. there's not much I can do but hole up on the futon with Dr Who, then spend all the money I will get from cleaning my boys' house on chocolate.

wait it out.

Poem for Monday, October 6, 2008

To a Reader

by Robert Hass

I've watched memory wound you.

I felt nothing but envy.

Having slept in wet meadows,

I was not through desiring.

Imagine January and the beach,

a bleached sky, gulls. And

look seaward: what is not there

is there, isn't it, the huge

bird of the first light

arched above first waters

beyond our touching or intention

or the reasonable shore.

Burke's Book Store
936 South Cooper
Memphis, TN 38104
(901) 278-7484
www.burkesbooks.com

take us apart and put us back together right

This band from Champaign,Headlights, are my favorite biking music lately.
I've been listening to this song in particular a whole lot in the past few days. it seems pretty relevant to what's going on in my life right now, in a very comforting way.

Strange winds are blowing me down this way.
There's no prize in sight but the pain in my feet but I won't remember after tonight.
The clock turns red and the word on the street is that we are getting ready to leave.
Behind me I've forgotten to check all of the things that somehow now I don't seem to need.

Stepping over broken doors down in the street, all the chairs and tables lay on their sides.
We have to turn them over and stand them upright so we can leave them on their feet for the night.
So we can leave them on their feet for the night.

Take us apart and put us back together right, so we can leave on our feet in the night.