My ACA story

To whom it may concern:

My name is Jam, and it is very likely that Obamacare saved my life.

The initial provisions of the Affordable Care Act began to kick in right when I otherwise would have aged out of my dad's insurance. The timing was perfect: my dad started to pay a small premium month to keep me covered until I turned 26, and I wasn't left with a gap in coverage. If the ACA hadn't come into play, my original plan was to go without insurance—after all, I was a young, reasonably healthy college student (or so I thought), and I couldn't afford to pay monthly premiums anyway. The healthcare available through my university, as far as I knew, only covered catastrophic care and visits to the on-campus doctors and nurses, and not referrals to specialists or extended testing.

Cut to my senior year. I've been struggling since high school with being constantly tired and headachey, but I attribute this to lifestyle choices and poor sleep, and power through it. During my senior year, however, things start to go downhill. I begin rapidly losing weight. I can't eat solid food without terrible pain. I am constantly hungry, but full after eating one bite. My throat is bathed in acid 24/7. I suffer like this for almost a year, subsisting entirely on Ensure shakes and barely pulling through some of my classes. It is a gastroenterologist, paid for by my dad's insurance, who ends up diagnosing me with celiac disease. There's no way to know how long I would have persevered with antacids and protein shakes and no diagnosis if I didn't have medical coverage. I shudder to think that undiagnosed celiac disease can lead to severe anemia, permanent loss of digestive function, and even intestinal cancers.

Fast forward to winter, 2014. By this point I've had to quit at least one job due to extreme fatigue and depression. I've powered through several temp jobs and am trying my best to keep the one I have right now. I can't keep up with my 40-hour-per-week schedule, however. All I can think about, all day, is sleeping. I try to get on some medication for depression, but the side effect of sedation pushes me over the edge. I come within a hair's breadth of attempting suicide. I call a crisis hotline for help. The police take me to the emergency room, and I end up in a psychiatric hospital for six days. My memory is hazy until I detox from the benzodiazepines, but I remember one guy stabbing himself in the leg with a dull pencil when they tried to discharge him. He knew he wasn't ready to go. The pencil went at least an inch and half into the muscle of his thigh. His insurance wouldn't pay for more than 72 hours. I was still on my dad's insurance, and all six of my days were covered, minus a co-pay that my parents could split between the two of them.

After I turn 26 and age out of my dad's insurance, I get on the Medicaid Buy-In for Working Adults with Disabilities in my state—which, if I understand correctly, could only be created via funding from the ACA. My fatigue is increasing, week after week. I cut my working hours to 32 per week. I have to quit that job and seek out another one that will let me work 20 hours a week. I have to cut those hours to 15. To 10. I have to quit working completely. I drop into regular Medicaid, which I qualify for only due to the ACA expansion. It's January 2016. I'm having trouble getting to the grocery store to buy food. I'm having trouble cooking my own gluten-free meals. I can barely do laundry or sweep my own floor. I go to the emergency room because I'm so tired it feels like I'm dying. I'm sleeping up to 18 hours a day, and for the other 6 I wish I were sleeping. They find nothing immediately life-threatening, and counsel me to follow up with my primary care.

I'm able to schedule a sleep study with National Jewish Health, paid for with Medicaid. By the time I go to the sleep study, I've had to move back in with my mom because I can't afford rent. I'm working again, but only 10 hours per week, and even then sometimes I have to call in sick. I'm incredibly fortunate to be working for an organization that lets me set my own schedule, even at the last minute.

When the sleep study results come back, I get an actual diagnosis: idiopathic hypersomnia. I start to read about it and it explains my entire life from when I was about 16 years old. It's a very mysterious and rare condition, but is believed to be a cousin to narcolepsy. Having this condition is like having tranquilizers constantly in your blood. Waking up in the morning is like fighting through a bottle of Xanax to keep your eyes open.

The good news: there's medication for that--paid for with Medicaid. It takes a few months to find a good one and adjust the dose, but I go from maybe 10 hours of work a week on a good week to a solid 15 to 20 every week. I can feed myself again, do some cleaning, run errands on my days off. I still can't work a 40 hour workweek—the medication is not a perfect cure-all—but I have hope again. The fog of depression that's been following me around since high school lifts. I don't want to die in the mornings anymore. I don't constantly think about giving up. I no longer obsess about cutting myself, burning myself, hurting myself just enough to release adrenaline, to keep me feeling more awake—even just 15 more minutes. Taking my medication feels like magic. So this is what it's like to get through a day without desperately needing a nap. So this is what it's like to actually want to get up and do something. So this is what it's like to feel awake.

As the current administration begins the process of dismantling the ACA, I've been researching my options. My current income from working part time and picking up odd jobs, in a good month, is around $1000. The out-of-pocket costs of my current medication, at my current dose, would be about $300 to $600 dollars per month. And that's not including necessary office visits to talk about side effects, adjust dosages, and check in to obtain more prescriptions. Without medication, I would completely lose my ability to work, and would have to rely on the kindness of friends and family in order to stay alive—or on government disability payments, although that's not looking good, since they already denied me the last time I deteriorated. I know that my parents won't let me starve or live out on the streets, but it's more than just being able to work. What kind of quality of life is it to sleep for 18 hours a day and stumble around in a stupor for the rest of it? How could I possibly keep my depression from coming back? Without access to regular therapy, what hope would I have to keep myself from falling back into the type of suicidal pit that almost claimed my life two years ago?

At this point in time I have five pre-existing conditions: autism spectrum disorder, celiac disease, recurrent depression (severe), idiopathic hypersomnia, and polycystic ovary syndrome. Without the provisions of the ACA that protect people like me with pre-existing conditions, where am I going to get coverage? What kind of medications, therapies, doctor's visits, am I going to be able to afford on $1000 a month? If I'm shunted into a state-run “high risk pool,” what kind of premiums and co-pays will I be able to afford?

Not to mention, the “idiopathic” part of idiopathic hypersomnia means, “without known cause.” There is a biological reason that I have the symptoms that I have, even if it's unknown now. Cutting off my healthcare at the root means I'll never have a chance to figure out that ultimate, original, causal diagnosis, which for all I know might even have a cure.

All I want is to have a reasonable quality of life. I want to work for decent hours and decent wages. I want to take pride in my occupation and in my education. I want to go out with friends and family and enjoy their company. I want to have the energy for my art, for my writing, for long-distance cycling, for camping, for practicing new languages, for learning new things. Without medication and therapy—without healthcare, I have very little to look forward to, and very much to dread.

I hope that my story helps shed light on how important the ACA has been to people. I believe that affordable, accessible healthcare is a human right, and should be given to all citizens of our nation.

Thank you for your time.

inertia

the morning passes slowly, like a
kidney stone.
i sit on my bed, drinking tea,
loathe to give up what left-
over warmth clings to this bed,
which isn't a bed so much as
a haphazard pile
of blankets
on the floor.
the sun has, in her in-
scrutable wisdom, chosen not
to come out when she was sup-
posed to--loitering, rather,
demure and thought-
less, wanton, wayward,
lost behind a deep and
haggard cloud.
and i know somewhere in-
side myself: eyelids heavy, muscles
heavy, belly heavy with hot
tea--i know indistinct-
ively that i
was never meant
for mornings.
it is far better for you to call
on me in the after-
noon.
if you are looking for
me then, you will find
me lying in bed or
standing in the backyard or
hunched over some-
thing small: something precise and
unusual: something detailed and
curious and
small

dolor

half-finished
heavy
poured out upon this
thankless ground
the air itself punctured
precisely, in
carefully measured intervals
by shards of silver
stagnant
silence
when, again,
the world zooms out
tips on its side--feints--faints--falls--
the way it used to when
back when
and then
again
the sickening silent lurch
and turn into a wild
skid, air cracking like windows
bursting into clingfilm-covered coarse
quartz sand
the very ephemeral air, the one and only air,
solid as a jewel and
twice as sharp.

stabilized

i wore the same bra for six days
because they gave it to me
and it fit
and i was captive there
and had no choice

what little i remember:
harsh light
thin sheets
blue clothes like
crackling paper
clinging to the new arrivals
with static electricity
and fear

i escaped that place
through a pharmaceutical fog
playing the game just so
nodding along to every word
they said
and pretending
that i wasn't trapped

outside
the corners of these buildings cut
into my consciousness
gnarled fingers rising up
from cigarette-strewn streets
to scrape the sky
and i
am still wearing the bra that
they gave me
and all the labels that
they gave me
and the world seems
just
that
much
smaller

unleash the kraken

it's Monday night

the moon hangs above me in four pieces, small and fragile in the orange-black sky

muffled laughter seeps thru the ringing in my ears

I'm okay and I'm dying in the same breath.

I can't sleep

every smell and taste is too strong, and I flinch from them, and my hunger grows with each passing hour. time means little to me now. the world presses down on me like a million stones in avalanche

and I

lay down

and look up at the quadrupled moon

and I wonder how long this life will last

three minutes

and outside I know the snow is melting under the warm sun I cannot feel under these fluorescent lights that buzz and hum:

background radiation of my shrunken universe folded in on itself with the gravity of each person here:

chemicals and medications and blood and power and helplessness bagged in skin and gathered up for who knows what reason except that it happened and we have to deal with it somehow:

three minutes can be a very long time

Something that makes me sad

I'm struggling with chronic fatigue issues and that is why this blog falls by the wayside. Apologies to my mama, and anyone else who reads this.

I had to leave work an hour early today in order to come home and sleep because I was so tired I couldn't concentrate. I had gotten 9 full hours of sleep the night before. I get 8 - 10 hours of sleep every night purposefully, but despite this have hypersomnia some days where I can't stop sleeping/taking naps because no matter how much I sleep or don't sleep, I still feel tired. This fatigue can cause anxiety, panic attacks, and super drastic mood swings on top of hypersomnia, migraines, and muscle aches.

I've been thinking about something because of this. My energy levels are really low. All I can manage in a day is to go to work, do a half-assed job, and come home. At home I eat a simple supper, then lie in bed with my computer and faff about on the internet a little while before going to sleep early. I don't have the energy to leave the house and do things like laundry, or even to wash dishes, so I save that kind of thing for the weekend. Sometimes I have to take sick days or leave work early because of these issues.

Normal people usually work 8 hours, sleep 8 hours, and have 8 hours a day to live their normal lives, do their hobbies, hang with their friends. Normal people leave their house on weekends and go do things. I basically have 8 hours worth of energy a day, and then spend the rest of the day sitting to eat or lying down or sleeping.

The way Americorps works you get 10 vacation days and 10 sick days to use. If you're sick more than 10 days you have to start using vacation days.

Being sick is a shitty vacation. Imagine you're sick for 15 days so you only get 5 days of vacation, and a healthy person who feels great all year gets 10 days.

As a sickly person I'm expected to work just as much as a healthy person, that full 8 hour day, and to prioritize work over personal projects and personal activities. And it makes me sad. Because if I spend 8 hours working, 12 hours sleeping, and 4 hours uselessly lying around wishing my head didn't hurt so much, I don't get the kind of productive personal time that a healthy person gets.

 I'm jealous of people who aren't tired all the time. I'm really frustrated with the way things are working out. I don't mind working, I really don't. But imagine that you only have like 7 hours worth of energy in a day and you have to use 8 hours working to make money so that you can have a place to sleep at night and food to eat so you can repeat the process.

I feel like, if I could work a 30-hour week instead of a 40-hour one I wouldn't be so gorram depressed about everything.

idk. peace.