collecting words in pillowcases & flipping them into the wind.

so, I’m still alive, if you can call it that.

I’ve been on his medication for long enough for it to do what all medication does — flatten me out & take away my words. the poet? she’s buried under a mess of chemicals & cassette-tape-months on repeat.

the only words I have now are “maintenance medication” and “you’ll probably always need to be medicated” and “we can always add an antidepressant… or seroquel”.

my options in life have been distilled into plastic bottles full of plastic futures that cost entirely too much.

do I regret going on medication? not sure yet. I probably won’t know until after I’ve weaned myself off, which I’ve already started doing, without psych advice, might I add. not that it matters much; I already know what my psych would say; I’ve had all those words already. it was worth it at the time; it have me a glimmer of hope to hold onto when I was thisclose from letting go of everything. everything has it’s place.

my running freefloating anxiety & sense of impending doom has all but disappeared, so there’s that. not to say the anxiety is gone — it’s not. I still get anxious about most everything: going to the store, going to the neighbours to pay for rented parking, going to the dry cleaners, thinking of starting to drive again. Okay, so three of those four I still haven’t done. so, define “progress”?

progress is, to my psychiatrist, accepting a second medication. cocktails to the girl who doesn’t drink.
progress is, to me, cooking every single meal I eat from scratch & eating nothing with a label. okay, so I’m still only averaging two meals a day, & one snack if I’m lucky & wake early enough, but I’m cooking! I haven’t been able to do that solidly for.. longer than I’d like to admit.
progress is, in my mind, that “a meal” consists of more than just one egg, fried. 230 calories is now a “small snack”. 230 calories used to be huge. 230 calories used to be a meal that I maybe couldn’t finish.

I am filling myself with much other things, now.

I’ve officially been on this elimination diet for 3 months & it’s become second nature. it got a whole lot easier once I realized there is a whole group of people who already eat like this, by choice. it’s called “paleo”. hahaha! there are blogs & recipes & recipe books full of food that I Can Eat. the writer in me can’t find the words to describe how fucking hysterically hopeful & … happy? that makes me. See, I am useless when it comes to trying to express happy emotions. It’s been that long.

yeah.

so I am pretty on board with this ‘paleo’ thing. I’m a little behind the curve, I know, but as I’ve always been ridiculous thin I’ve never kept up with the latest ‘diet’ things. until I was forced on it by a high TTG & another word: celiac.

as for my celiac-ness, well, it’s still here. still symptomatic, still getting more words, such as.. refractory sprue, steroids, stitches, surgeries & never getting better. luckily I am still me, so that means I can replace those scary words with ones that are much more familiar: denial & blind optimism.

optimism?

yeah, it’s been a while. optimism & hope now comes in the form of, well, more words, but these ones aren’t mine: these are written by someone who knows far more than I do, on nutritional therapy. Julia Ross, “The Mood Cure”, a manifesto based mostly on curing all this mental shit with high doses of amino acids & vitamin/mineral combos. and what do I have other than time? an ability to swallow 3 pills at a time & whole lot of hope.

I’ve been on her supplement plan for 4 weeks (not counting the one week where I fell off the wagon & binged exclusively on homemade honey-sweetened-nutflour-baked-goods, cakes & french toast, but I deserve a little break for getting through all the SHIT I’ve been through in the last year+, damn it!) & I’ve already felt better than I have in…….. years. better than I did when I cut gluten. better than I did when I cut processed sugar. better than I did when I cut fast food, dairy, nightshades, starches, grains…. and a whole shit load of better than I’ve felt since starting my state-sanctioned-pharmaceuticals. so, fuck all this; I am going fullsteamahead on this supplement plan. when I had my binge/crash, I felt my mood slipping slowly each day I went without my aminos. but… even still.. my mood wasn’t nearly as bad as before. just getting dark around the corners, as if being consumed by a silent flame. my suicidal thoughts were relegated to 30 minutes of sadness, instead of my entire waking existence. maybe nothing to you, but to me, that is a fucking miracle. as it turns out, those miracle pills I’ve been looking for since 2008? THEY EXIST. only they originate from protein, not pharmaceutical laboratories. shocking, I know.

I am seeing my psychiatrist at the end of the month, when she gets back from her vacation & I am informing her I’m going off my meds. they haven’t done anything positive for me since I hit around 100/125mg, anyway. my progress has plateaued, and who knows if that progress was from the antiseizure meds or from just a mix of eating more than 1000 calories a day, cutting grains/nightshades/starches/the rest of my gluten & the placebo effect.

I’m getting other effects, too, that aren’t placebo: my hair is falling out, my eyelashes are falling out, my eyes are blurring & it’s hard to focus them.. oh, and I’m suffering from a serious case of medication-induced-unwritingitis. it’s not so much that I can’t write, it’s just that I forget about writing. no longer is the need to write there… the pressing need that forces me to spill words onto keys like they actually matter.

not sure if I’m getting better or if I’m just accepting this lower standard of living. maybe both. but I’ve definitely accepted that this ‘getting better’ thing is going to take time, even if my mind is trying to hurry it up. this letter today sounds pretty depressing, I guess, but for what it’s worth I don’t feel depressed. I have been suicidally depressed for the last 2 years up until the last 4 weeks when I started taking these aminos, so there’s that. a reprieve from the urges that make me want to leave this world behind? sure, I’ll take it; it’s a welcome vacation from the life I’m currently stuck, stuck, stuck in.

taliho, for now,
I’m sure I’ll be seeing you somewhere closer to 125mgs.

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a little bit scratchy.

it was dark out; still not certain what that meant.

head-in-the-clouds optimistic
but also
eyes-in-clouds blurry,
often wondering;
is any of this real?

wondering how others could just,
be in the world.

i was always
clumsy & distracted by
my nervous shoulders, my clenched stomach,
my foggy head.

i was always
stuck with me circling calenders on the dates —
whispering words that sound more like wishes
even as soon as they’re said.

i grow older but, even still,
my mind can never keep up with the time.

i change my hair color & try to convince myself
that things are different, now.

my mathematics said what? (gluten IS addicting, but what’s worse than that it’s in EVERYTHING, even raw/precut/fresh local supermarket veg))

i did some math. i am really bad at math (probably because of my inability to think rationally ;), so i needed to use my phone calculator. but the numbers scared me so much more: blinking dull grey on an even-duller-grey background: 12.2.

my previously-written numbers were the same; my math wasn’t wrong; i had figured it — out just those numbers sounded so… off.

12.2. or 12.2%, should i say: the percentage of my body weight i’ve lost in the last 2 years. & 60% of that has been in the last 4 months.

because of celiac disease. seriously. & it scares me, so much. so, for lack of a better term, fuck this. this is my resolution, my confession; i confess to do all the following & i confess it will be hard as hell. but who am i kidding, i am the all-or-nothing type.

i’ve just pre-dated the next two months on my calender, for anniversaries,

of the weeks in which i will not consume ANY gluten:

  • NOT by “this product is made in a facility that processes wheat”
  • NOT by “this product may contain wheat”
  • NOT by cross-contamination
  • NOT by restaurants that don’t get how strict my gf needs are
  • PROBABLY NOT by restaurants at all (let’s be honest, i have trust issues)
  • NOT by “oh, i already opened this MadeInAFacility item, but i can’t waste it…”
  • NOT by the “glutenfree!/made in a facility that contains wheat”
  • NOT by “oh my look at how delicious that chocolate/cherry cupcake looks”
  • NOT by “well, i haven’t cheated on my diet in 2 months & this questionable meal is convenient….”

and

  • if it’s packaged without a GF circle badge, NOT BUYING
  • if it’s a supermarket-style pre-wrapped, no label pre-meal, NOT BUYING
  • if it’s been processed in any way prior, NOT BUYING

i am beyond tired of accidentally/sometimes intentionally glutenbombing myself on a weekly+ basis. i’m four days from FULLY GLUTEN FREE, but i cheated twice with whey last two days & my symptoms are still intense. i want this wheat, these gluten-toxins OUT of my body, so i can begin to physically repair 27 years of intestinal damage. i want to stop getting lax with my diet & thinking things “won’t hurt”. i am too sensitive for that bs; i physically can’t. it is destroying my body AND my mind. i want to eat at least 2500 calories a day, every single day. and i want to do it without feeling terrible after, far too stuffed. i want my moodswings to be permitted to happen completely separate from the physical symptoms i am experiencing due to my celiac disease.  in a lot of ways i’m lucky; celiac disease supersucks, but at least i can fix/repair my system by just not-eating-a-certain-thing(s). i’m grateful i don’t have anything that requires medication — we all know i have enough medication-needing-thingies without adding on another one. i realize healing will take time, but i’m especially impatient because i thought i had ‘started’ treating this back last august. to know that it’s only been one week is pretty shitty. i want to be able to do more physical exercise without getting short of breath so quick, i want to be able to run & dance again, i want to dance so badly. i guess i want to fix my anemia, fully-perma-fix, none of this perpetual-fixing with iron tablets that don’t really work & an intestinal system that won’t absorb worth, well, shit. i have my humour & the rest of my life & i am willing to wait, but i want these things more than anything.

heh, quite the change from hypomania’s ‘wanting new jeans’, which coincidentally i have, if only because i’ve lost weight.

extending the olive branch.

seeing my psychiatrist in a little over an hour. psychiatrist. despite my diagnosis & my absolute inability to function at anywhere even close to a ‘normal’ level for the last … two/three/four? years, i still feel a little hesitation using that word; it feels wrong. psychiatrist? my psychiatrist. i say it with a laugh, or in a joking voice — humour — my favorite coping device. pretty much one of the only ones i have, let’s be honest. well, one that isn’t completely self-destructive. denial, my favorite friend. Continue reading

the placebo effect.

today i feel
better than fine
i’d say
things are looking up
if i wasn’t superstitious & worried about jynxing myself.

today i found
hiding under an inch of dust in the corner
seen it many times before but never took the time to look inside
wrapped in bowed boxes i found
my permission
to relinquish some control
over the sickness i couldn’t shake.

today i feel
taking shaky steps on faun’s legs for the first time
new to the world that isn’t all black holes & disrepair

so good it makes my skin crawl
i’m always so surprised
to feel something other than sadness and
life-crippling guilt
for all i’ve done & didn’t.

seven months clean with only the occasional relapse; not bad for a 27 year addiction, right?

twenty seven years —
my daily disorder
my favorite disease
no cure; just endure.

i’d be the one getting bloated off one beer
blaming the carbonation while
foaming at the mouth.
take my addiction daily
at every meal;
take my misguided medication orally
swallow & let it destroy me
from the inside
passive suicide.

i’m unable
to understand how something so highly recommended
can be so dangerous —
as it smiles at me from across every counter
hidden within
every wrapper
comes prepackaged with lies & paper promises:
6-8 servings a day are strongly suggested
they say
take two of these with every meal
and don’t call me at all.

quitting cold turkey sandwiches nearly felt worse than quitting effexor in two weeks;
infecting my head with thoughts of pastries & things i haven’t had in years are suddenly everywhere —
spend till 3am shaking salivating staring at pictures of pancakes & crepes & croissants & muffins…..
writing a hundred gluten-free recipes until my hands cramp & my fingers turn blue
from ink & disappointment;
avoiding bakery aisles to stave off saline eyes
because the smell of bread
nearly sent me into DT’s.

sadly for me there was no self-help group for gluten addiction; there’s an overeaters-anonymous but no overwheaters support to coax me to drop the needle filled with macaroni & cheese.

i did it all my own, stubbornness beside me
seventy two hours & the worst was over.

now the diagnosis: celiac — the word sounds to me more like a car than the life-sentence
that drove me to the edge of insanity & back but
another medical excuse for mood swings & tiredness is
greatly appreciated; & after all i’ve already cleared for it
a spot in my garage.

despite my mistrust for doctors i must say: there’s
nothing like an incurable disease
to cure me.