my experience:
the hardest part about learning to live
is to find
so many things to conquer again
for the first time.
my experience:
the hardest part about learning to live
is to find
so many things to conquer again
for the first time.
the Knowing gets underneath my skin & sticks
to the places I can’t wash off.
crusted yesterdays are deep beneath my nails,
blurring colors I can’t describe
& can’t recall.
beneath all this rests
clean-slate-sublime,
words I cannot find.
I sit
& let my shoulders settle down beneath my collarbones
for the first time.
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.
i am being tested.
got more results back;
i don’t have osteopenia (yay!) but my bone density is lower than expected for someone my age. “high risk for osteoporosis”, as the sheet says.
and that’s the good news.
as for my TTG? it jumped from 60 to A HUNDRED AND FUCKING FIFTY FUCKING FIVE. 155! and this is after i cut all gluten. and this is with NO *no* *N*O* cheats. the only times i’ve had gluten in the last 3 months since my last blood test i can count on one hand, and every single one of those times it was by accidentally ingesting food that was “made in a facility” with wheat. and those were all within the first week of being diagnosed, as i cut all those MIAF’s right away.
but apparently gluten can hide in things that aren’t even marked as containing gluten, or processed in a facility with gluten. dear gluten, fuck off & leave me alone. pretty please?
and what is worse than this? (ha, shall i make a list?)
in the last 6 weeks i’ve been diligently following my elimination diet, which has me cut absolutely everything except certain vegetables & fish/beef/bison. mostly because everything else i was/am reacting to. pork is gone, chicken is gone, turkey is gone. fruit is gone, nuts are gone, yeast is gone, egg is gone, forget about spices & seasonings. coffee is gone, tea is gone, chocolate is gone. sugar was gone a long time ago, as was dairy. soy has been gone for months now, too. anything that comes in a box is gone, anything that goes in the microwave is gone, anything with an ingredient list of more than ONE FUCKING THING is gone. oh, and did i mention yet 6 weeks ago i cut ALL GRAINS? no rice, no quinoa, no millet, no teff, no oats. no corn. no potato. NO RICE!! no cabbage/onion/garlic. no sulfates, no preservatives, no pesticides. nothing but organic whole foods. and only some of those. the list of things i don’t eat is really much longer than this. but i’m depressed enough already.
how the fuck can i have MORE GLUTEN eating like this, than when i was having the monthly-cheat of a gluteny muffin or cupcake or panini? or iced chocolate cake….
how was i healthier THEN than i am now, on this ridiculously restrictive diet!!? even more pressing: HOW AM I STILL HAVING GLUTEN?
is it because i inhale a little too deeply when i walk past subway?
is it because i stare a little too longingly at the bread commercials?
all my medications are circle stamped gluten free. everything in a package (except for my frozen vegetables & ground beef) say gluten free. are STAMPED gluten free.
IS IT BECAUSE I LIVE A BLOCK AWAY FROM A BAKERY!!?
maybe my vegetables are contaminated? is grainfed beef gluten-free? IS OXYGEN REALLY GLUTEN IN DISGUISE? the stupidest thing is i don’t even know if i’m joking. it sounds like i am, but sure doesn’t feel like it. at least i still have my sense of humour. and shitloads of gluten in my system. fuck!
now i think, maybe i am not actually reacting to every single food i’ve cut in my quest to find-foods-that-i-can-tolerate; maybe it’s… no, IT IS just the gluten. so, now, on the anniversary of the 6 weeks of which i have been on this ridiculously restrictive (did i say that already?) elimination diet……….. i find out that maybe an elimination diet isn’t the answer. or helpful at all. because the one thing i SHOULD be eliminating, is FUCKING GLUTEN.
dear gluten, i know you love me. and i loved you, for a long long time. but this relationship has become destructive & now i see you were never meant to be with me. i know it’s hard for you to hear this (or hear at all, as you’re a tiny molecule of deathness), but it’s over. or, it will be, as soon as i find out where the hell you’re hiding.
love,
me.
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.
one step forward
fifty steps back
& not even
in the same direction.
autoimmune things are such a bitch.
typing aloud of my disordered
relationship with food
resisting
the urge to instantly delete,
to password protect,
to put away.
letting go of cracked concrete walls
watching them fall
exposing me naked
shiny new & sulfuric
without any skin.
denial makes me terrified
of the truth inside;
as i peel down the layers of my onion soul
thin filmy layers of purple paper roll up & get stuck
beneath my fingernails.
i’ve half-shopped
these supermarket mind aisles before & i
know the stench will stain
half-regretting that
my hands will smell like mental poison for the next
two weeks
straight.
i)
just eat
simple advice comes in pre-packaged chunks
a bite-sized piece that breaks off
can’t chew
my throat swells dry &
your words get stuck between my teeth.
just look through the cupboards & find something you feel like
i feel like laughing,
something i feel like?
i feel like forgetting human function
floating above the clouds & eating half-a-meal
on my shrunken stomach
when the hunger strikes;
maybe tomorrow? maybe tomorrow night.
my too-small jeans are becoming too-big &
i feel like forgetting i exist.
Continue reading
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:
and
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.
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