Saturday, December 6, 2014

#icantbreathe aka the time police almost killed me but didn't.

i want to talk about white privilege. before you click that little X in the corner, i want to tell you that i understand what you’re feeling right now, reading that. you’re thinking, “i’m poor” or “i’m disabled” or “my grandparents imigrated here”, or any one of a thousand other reasons you feel that you aren’t privileged. i understand that because i used to feel the same way. i grew up in a welfare family. at the end of the month there was never food in the fridge. i wore tattered hand-me-downs and our christmas presents came from the telephone company or the salvation army or whatever charity took pity on my single working college student mother and her two young daughters. i am also seriously chronically ill and physically disabled. i use a hearing aid, a wheelchair, a walker, and i eat through a tube stuck in a hole that was surgically punched through my stomach wall. i am gay, autistic, and 5th generation american.

i am also white.

i used to think, probably like you are right now, about the terribly difficult life i had and still have. how could i be privileged? look at all the evidence that i’m not privileged, right? but privilege has different levels. if you are in a heterosexual relationship right now, you have heterosexual privilege. this is true no matter what your skin color is—you are privileged in a way that i, as a lesbian, am not. you do not have to live in fear that someone will hurt you or the person you love for being together. you can get married and never worry about what state you’re in. you can adopt a child, you can visit your partner in the hospital, and should your spouse die without a will, you will get whatever rights are due you, including survivor benefits and unquestionable custody of your children. none of this is true of me. so in regards to sexuality, you are more privileged than i am.

so when i say the words “white privilege”, i want you to understand that i am talking about your skin color and nothing else. the rest of your life is objectively excluded from this argument. it doesn’t matter how poor you are, or what gender or sexuality you are. it doesn’t matter if you have a wheelchair or a seeing eye dog or an ostomy. if your skin is light, you have a privilege that people who are dark-skinned simply do not have.

when a police officer sees you standing on a corner they assume that you are waiting for a friend, waiting for a bus, waiting to cross the street, or just hanging out. if you’re in a mostly black neighborhood, he will assume you are lost.

but if you have dark skin, and are standing on a corner, they assume you are buying or selling drugs, looking for someone to carjack, waiting for your fellow gang members, casing a place you intend to rob, or, if you’re a female, prostituting yourself. if you’re in a primarily white neighborhood, he will assume you are there to commit a crime.

white privilege is being able to walk down the street and having nobody notice you. when your skin is dark, you cannot blend into the background that way. you stick out even among other dark-skinned people as a target of interest to suspicious whites.

i want to tell you a story from my life now.

this all happened only a few weeks after my 18th birthday. a legal adult and in a bad mental place, i made the poor decision to steal a book from a toy store. it was stupid, it was illegal, it was wrong, and it ended with me in handcuffs getting stuffed into a police cruiser and taken to one of philadelphia’s hovels that passes as a police station. i deserved to be arrested and punished—i broke the law. i took something that i did not pay for and i didn’t even have the moral high ground of it being food or medicine.

i was brought into the station around 2pm and put in a cell. as the hours passed, my cell and the ones around me filled up because the police had been doing a bust on several crack dealers in the area. sitting on a cold, dirty metal shelf and staring at a corroded privacy-free toilet-slash-water fountain, chewing slowly on a stale cheese sandwich and purposely not sipping the carton of iced tea i’d been given because i didn’t want to piss in front of 40 strangers, i was surrounded by drug addicts and scared out of my mind. one black woman sat next to me, using a fake nail she’d snapped off her finger to slash into her fingertips, attempting to obscure her fingerprints. the cells overflowed with other black women and a handful of white women.

im gonna interrupt myself to point out that drug users in general are predominantly white, while crack users are predominantly black. if you think it’s a coincidence that they were cracking down on crack, i refer you to leroy jethro gibbs, who doesn’t believe in coincidence.

after a few hours of sitting with my knees pulled to my chest, the elmo fabric of my pants getting increasingly dirty from the squalor of the cell, crying on and off quietly and wanting nothing more than to just be home with my mom, the woman who’d been trying to scratch off her fingerprints looked over at me and frowned. “how old are you?” she said. “shouldn’t you be at juvie?” i wiped my cheeks and shook my head. “i turned 18 last week.” the woman sat up straight and i shrank into myself, afraid of this stranger who’d been arrested—never mind that i’d been arrested, because i wasn’t a real criminal, i wasn’t buying crack.

and this woman, who had made a career out of sitting in jail cells at that point, reached out and gently touched my shoulder. she said, “honey, tell me you didn’t tell them you were 18. tell me you lied about your age.” i told her no, i hadn’t. that i’d figured they would know if i was lying and i’d be in more trouble. she, and a few other women from our cell and the others, then gave me an hours-long lesson on police procedure, on law, on attitude, and on the fact that because i was a young white girl, if i had told them i was only 17 or 16 or 15, i would be home with my mom right now, the way my younger sister who had also taken something and who also was arrested, but had been brought to juvie and released within a few hours, was.

later that night, around 8 or 9 pm, i had an asthma attack. i felt it coming on, felt my lungs tightening, and i kept telling the police officers that i couldn’t breathe, that my inhaler was in my pink backpack i could see hanging on the wall behind a desk. they never looked up, never acknowledged me. i fell to the floor and while i was half-conscious, my cheek resting on the ground in a puddle of my own vomit, my vision going dark and my lips turning blue, choking and gasping for breath, i heard a woman in the cell opposite mine—one of the only other white women in there, and whose husband was a lawyer who probably would not be happy to hear she’d been picked up at the crack bust—shouting that they were going to have one hell of a lawsuit if i died there, and that every last woman on the cell block was a witness. the women shouted and stomped and banged on the bars, all of them yelling and rubbing my back and trying to get me to breathe, screaming at the cops to get the inhaler out of my backpack, telling them i was dying.

at some point someone pressed the inhaler into my hand and, too weak to lift it to my mouth myself, a dark, feminine hand lifted the inhaler to my lips and depressed it, thumping my back, rolling me to my side, trying to force me to take one last breath, to pull the medication into my dying lungs. the next thing i knew my own hand was on the inhaler and i pumped it a dozen times, gulping in the albuterol and forcing my lungs to keep working until the EMT’s arrived. with a blood pressure of 250/180 and oxygen being forced into my lungs from a tank, they took me to the hospital via ambulance and kept me there until my blood pressure dropped. the triage nurse made them take the cuffs off of me when she found out i was in for shoplifting a $5.00 book, and threw the cop out of the room. she told me i had to calm down because i was about to have a heart attack. after she’d stabilized me and i’d been forcibly drug tested at the officer’s request (i was sXe & they had no reason to believe otherwise), i was taken back to the cell. every woman in the hall reached out as they marched me back to the cell, touching my shoulders and thanking god that i’d come back, because they didn’t think i would. those women, those "hardened criminals" that i'd been so afraid of, saved my life. they protected me while i was there, they comforted me and enabled me to survive one of the worst experiences of my life.

after that, i was kept at the precinct all night before being transferred to the “round house” the next day. we were herded around like animals and finally, at the round house, given toilet paper for when we had to use the bathroom. later that second day i went before a judge in a little room with a bunch of individual video-phones. i never spoke. the judge looked at me and released me “ROR” which means “Released on Recognizance”—basically that i realized i’d committed a crime and i was sorry about it. i did not need bail money or a lawyer. i was told i would receive a date and time and location to attend a criminal justice class, which did cost several hundred dollars to attend, but that after spending two hours learning about the justice system, my record would be expunged and no one would ever know what i did. and that’s precisely what happened. the only reason anybody would know what i did and what happened to me, is the fact that i am blogging about it right now.

now that i’ve told you my story, i’m sure you’re saying, “but look there, you are white and you almost died, you were on the ground crying out ‘I can’t breathe’. so how is that privilege?”

the privilege is that i am here. telling you this story. i did not die on that jail cell floor. my heart did not stop beating. they brought me my inhaler when they realized i wasn’t pretending, when they realized what an outcry my death would cause. when they realized that if a young white girl was left to die on the ground, people would be angry. people would care.

eric garner did not have that privilege. the policemen and EMTs that left eric garner to die did not think to themselves, “people will be angry. people will care that this man is dead.”

the only reason that i am alive right now is because i am white. because my picture on the evening news would outrage the nation. a young white girl with a life full of potential was left to die over a $5 book, the politicans and news anchors would say. how could such a tragedy be allowed to happen? how could these officers, these people charged with upholding and enforcing the law, let this child die?

Michael Brown, 18.
Eric Garner, 43.
Kimani Gray, 16.
Kendrec McDade, 19.
Timothy Russell, 43.
Ervin Jefferson, 18.
Amadou Diallo, 23.
Patrick Dorismond, 26.
Ousmane Zongo, 43.
Timothy Stansbury, Jr., 19.
Sean Bell, 23.
Orlando Barlow, 28.
Aaron Campbell, 25.
Victor Steen, 17.
Steven Eugene Washington, 27. (Autistic)
Alonzo Ashley, 29.
Wendell Allen, 20.
James Brissette, 17.
Ronald Madison, 40. (Mentally disabled)
Travares McGill, 16.
Ramarley Graham, 18.
Oscar Grant, 22.
Trayvon Martin, 17.

all black males. all unarmed. all murdered by police officers.

all somebody’s child, too.

white privilege is not having to think of these names every time you leave the house. white privilege is not having to be afraid of being killed for existing. white privilege is having the police assume you are unarmed, assume you are where you are for legitimate reasons. white privilege is being given a pass, being given the benefit of the doubt, being assumed innocent until proven guilty rather than guilty until proven innocent. white privilege is never being in the wrong place at the wrong time.

white privilege is surviving to tell the story of the time you almost died in police custody, rather than having the story told by your surviving loved ones while you are six feet under.

Sunday, July 6, 2014

some days it's all worth it.

some days are perfect
and some simply could not get worse
some days it's all worth it
and some days this life is nothing but a curse
- "inside out", sara bareilles

being sick has taken a lot away from me. i spent a lot of my life being lost, and just as i started feeling like my life was coming together, (i'd gotten my GED, learned to drive, gotten my license, bought a car, started college, gotten my own place) suddenly illness struck and everything changed, literally overnight.

me and my super-smart grampa, circa 2010 or so, before i got seriously ill.
and clearly before i lost over 70lbs. hey there, chubbyface!
from the time i was a very, very small child, i was usually the smartest person in the room. this isn't me being full of myself--i was reading chapter books by the time i turned three years old and when i was given an IQ test at 5, my IQ was a mere two points lower than my grandfather's--a man who was invited to join MENSA.

so when i say that i was smart, i mean in that really awkward sheldon cooper/little-professor way. i hungered for new things, and every thing i encountered that was learnable, i learned it and i learned it fast. i was consistently bored in school because even in gifted class, i caught on quickly and was ready to move onto the next thing while my classmates trailed behind me and my teachers tried desperately to come up with things challenging enough to keep me engaged. and all along that's what i did: i got things. fast.

the frog is very happy about this tubie pad.
so you can probably imagine how hard it's been for me to become one of the most dense people i know. my memory is completely shot. i frequently do stupid or forgetful things. i've struggled through most of my college classes. i just don't get things anymore. if i do get them, i get them slowly and usually only after someone has explained it to me. which, as you might already have figured out, is something that bothers me a lot. i am not used to not understanding things, and for me, the worst feeling in the world is feeling like i am dumb. (and while i appreciate the fact that most of you reading this right now probably don't think i am dumb, that unfortunately makes no difference in how i feel.)

i tell you all of this so that you'll understand why yesterday was such a triumph for me.

recently i decided that instead of spending the summer laying around being bored and sad, i would break out all of my crafting stuff and get working. i am not much of an artist to be sure, but i like making kandy (raver) jewelry, i can knit anything that is rectangular in shape, and i have long wanted to wipe the dust off the 4th or 5th sewing machine i've owned in my life and learn how to use it. despite owning quite a few sewing machines i have never actually been able to use one, and although i've done a lot of clothes altering (of the "funky style" persuasion--no nice neat hems or anything like that) it has all been done by hand.

circles are overrated. as are simple
straight stitches. zigzag 4 lyfe
for those who dont know, sewing machines are actually a lot more difficult to use than you would think. or at least, more than i thought. nonetheless, i glanced at the manual just long enough to determine what each dial did, grabbed some scrap material, and off i went.

my first creation was a "tubie pad"--a bit of material with absorbent backing (i used fleece) and a closure of some kind (velcro or snap usually) that goes around a feeding tube to soak up any leakage. a lot of people make these little pads in any color or pattern you could possibly imagine, and they aren't very expensive and seem(ed) simple enough to make. there are probably better projects that i, as a whatever comes BEFORE novice could have started with, but i chose to start with a very tiny circular thing as my introductory project, and it didn't come out too bad if i do say so myself. it also didn't come out too circular, but hey. perfection takes practice, and at the point i made this all i had ever done with a sewing machine was run some scrap material through it to get a feel for the pedal and wonder why on earth the stitches kept falling out.

"my sewing machine has feet?"
indeed, when i made this little tubie pad, i began without knowing what the difference between a spool of thread and a bobbin was.

not fancy, but it's functional! and of course, once i realized that i actually made something where previously there was nothing but some fabric scraps, i was instantly hooked in that beautiful obsessive way that only an aspie can be.

i liked my new tubie pad, but i wanted to attack a bigger project, despite still not having much of an idea of how to do really anything with the sewing machine.

"i want kan*dee," circa 2001 or so;
i've been aching for a pair of phat pants lately. i've been a lot of a things in my life but at my core i have always considered myself to be a kandy kid. in the deepest recesses of the darkest depressions i've been in, it's always been the rave culture, fashion, music, and ideals that has saved me and pulled me back up out of the darkness. i feel lucky to have such a thing in my life, something that can save my life day after day.

however, i left all of that behind when i moved to new jersey for school. i donated or got rid of most of my "funky" clothes, stopped dying my hair crazy colors, and tried to be "normal".

¹ PLUR - the raver's core belief system.
Peace. Love. Unity. Respect.
it didn't really go well. trying to be someone besides who you really are usually doesn't.

and so i've been on a mission the past few months to reach inside myself and pull the happy, bubbly, walking rainbow up onto her feet. i live PLUR¹, i always have, and i always will. but there aren't words to describe what a difference it's made in my general outlook, how much more myself i feel. it's really a fantastic feeling, and i truly encourage you,  dear reader, if you have found yourself living a life that doesnt feel like it's truly yours.. stop it. stop it today, right now, and discover or re-discover who you really are. and then be that person, without worrying what other people want or expect from you. because they have their lives and choices to spend how they wish. you shouldn't let them spend your choices too.
care bear themed phat pants from enlightenedlibra.

so now that we've got all that out of the way, i decided that my second ever sewing project would be a rather large and complicated pair of phat pants. i won't even bother trying to describe what phat pants are, because they are whatever you want them to be. phat pants are large, wide legged. if you grew up in the 90s you may know the denim form as "skater jeans" or "pants that could house a family of five". for me, phat pants are super comfortable, super baggy, super cute pants or jeans. they might have fur or bondage straps or cartoon characters or bedazzles or whatever makes the wearer happy.

pants, believe it or not.
my overzealous pins.
i decided to go with a pink base because pink is my favorite color and before i had even gotten as far as tracing the paettern, i had already decided that i would be wearing these pants an awful lot. i discovered along the way that while sewing IS something that has to be learned, it's actually not as hard as it looks. well, at least, it's not that hard to do simple projects. i am not going to pretend that there aren't a LOT of people out there that are ridiculously talented with a sewing machine and can make super awesome stuff thats far beyond my level. but basic stuff? definitely not as hard or scary as it looks. (or looked to me!)
gunnery sergeant tigger² inspecting my work.
for the record, he approved.
 i went a bit overboard with pins on the first leg. i was very concerned that the fabric would just slide all over the place and everything would be ruined forever. by the time i got to the second pant leg, though, i had calmed down and was only pinning what was strictly necessary.

i went into this project intending to make a simple elastic waistband. with my weight constantly bouncing around due to a combination of unstable nutrition, unstable health, and the latest addition to my list of maladies, hyperthyroidism, and the fact that i can't take a lot of pressure on my abdomen, an adjustable or elastic waist is practically a necessity. im hoping to add a drawstring for further adjustability (since they did come out rather large even with the elastic waistband!), and on the next pair im going to aim for less generalized measurements as well.

 ²  yes, my cats have ranks. gunnery sergeant tigger, chief
petty officer tobias, and lance corporal faith. don't judge.

the waist of these pants came out just about as huge as it looks in the photos, but that was okay for two reasons:
  • they're phat pants. the bigger, the better,
    and the more comfortable.
  • with an elastic waist, there needed to be
    enough material to "scrunch" up around the waist for the look i was aiming for.

 i decided instead of just using the same material for the waist, that i would use the contrast material (meant for the pockets and accents, as in the care bear pants pictured earlier in this entry).

and yes, i also used care bears because i love care bears. this part was probably the easiest. i attached the strip of care bear material and then folded it over to create a tunnel for the elastic waistband. while stitching the fold, i stitched back and forth across the original seam that attached the care bears to the pink, thus reinforcing the seam. i left a bit of overlapping pocket open so that i could put in the elastic and possibly later a
drawstring. (for anyone who cares, i used a very tight zigzag stitch to complete the elastic strip into a loop, and i went over it four times back and forth to make sure it would not detach from itself. these pants may be very, very far from perfect but they're strong at least.

at this point they still aren't finished. i still have to hem the bottoms as they're way too long for me, and add all the embellishments, pockets, and accents i want. but they are, as of now, actual pants. they have everything that is required to call something pants, and i'm pretty happy with myself right now.

so right about now i assume you're thinking to yourself, "that's great and all, but i thought this entry had something to do with with triumph and illness and feeling dumb, so what exactly is your point here?"

attaching the waist after 6 straight hours of work and while
obviously very medicated, judging by my eyelids.
the triumph here is that i was, for the first time in a very long time, able to once again get something.. and get it fast. i went into my first project knowing nothing at all about sewing. i had to google many of the words used in the manual, i had to watch videos to figure out exactly how the basic pattern for making a pair of pants (phat or otherwise) worked. i didn't understand what a bobbin was, or why my sewing machine had so. many. dials.

the triumph was that within 24 hours i went from having no idea what was even going on to being the proud owner of a pair of as-yet-undecorated, totally unique, handcrafted with love and my own blood sweat and tears, bright pink care bear phat pants.

the triumph was that yesterday i took something back from the illnesses that have taken so much from me.

and that, my friends, is worth absolutely everything.

Sunday, June 15, 2014

the chubby tubie and other medical marvels

this entry, like so many others, started out as a comment to a dear friend. she, like me, is a bit on the fluffy side and as such, she has faced much of the same nonsense i have in regards to being ill and needing a feeding tube. there's an unfortunate and inaccurate belief among many people, including medical professionals, that if someone is overweight it is the source of any malady they experience. there is also a belief that those of us who are fluffy, chubby, pudgy, or squishy cannot possibly be in much danger of dying from starvation because hey, we have a few extra layers, right?

well, not so much, actually. in fact, not at all.

that's why i'm here to tell you that if you hold those beliefs you are sorely mistaken. and i want to help you, dear reader, to understand why what you know about weight is wrong, as well as to understand a bit more about how this disease that i and so many of my friends suffer from, works.

NECESSARY DISCLAIMER: im gonna preface this entry by saying anyone who has anything to say about my weight or anyone else's weight, whether they are heavy, thin, or "just right", will get a smackdown. so if you don't think you can read about a chubby girl or a skinny girl or see pics of them without making a nasty comment, dont read any further. someone else's body is really none of your business in the first place anyway. i'm writing this blog to educate, not to encourage stereotyping, shaming, and cruelty. nasty or ignorant comments will be removed and their writers will be permanently banned and possibly have their computer exploded from the inside out by my brother, the hacker slash codemonkey extraordinaire.

i also want to apologize (but only a little, since i wouldn't have written this if i didn't think it was important!) for the length of this, but i feel this is a very important topic that doesn't get discussed nearly often enough, and i feel that people who are heavy are often dismissed by doctors as well as others in the community, their friends, their family, and even perfect strangers. so i have a lot to say, and i want you all to take every word of it to heart---i think that everyone should know this stuff when it comes to the very touchy and often upsetting subject of being chronically ill and overweight at the same time, because even doctors assume that if you're heavy, that's why you're sick.
my beautiful & bubbly bestie
okay. onwards, dear reader.

first things first: weight is irrelevant.

no, seriously. hear me out. im old and i know things and this is an important thing that i want all of you to know as well. weight. is. irrelevant.

weight means nothing. nothing at all. there are people who are underweight and have been for their entire lives but were always healthy. my bestie pixi is one such person--even though she's chronically ill now, with a condition called UPJ (Uretero Pelvic Junction Obstruction) she has always been very thin and was in pretty decent health for most of her life.

there are also lots of people who are overweight or, yes, even morbidly obese who are healthy! no diabetes type II, no heart problems. athletic, active, healthy-eating people who just happen to be heavier than a chart hanging in a doctor's office somewhere says they should be. you can be healthy or you can be ill at any weight.

in fact, many times weight has nothing whatsoever to do with your health! in many, many cases, whether someone is overweight or underweight, weight can actually be a symptom of a problem rather than the cause of the problem.

im gonna give you a partial hit of my story here, and stick with me cause i promise its very relevant.

shortly before i was diagnosed with gastroparesis, i was the thinnest i'd ever been in my life. at 5'1 i was 148lbs. which is still overweight, but for me, for my body type, for my build and the way i carried the weight, i was wearing a
Helicobacter pylori, previously named Campylobacter pylori,
is a Gram-negative, microaerophilic bacterium found in the stomach.
Read more about h. pylori at
size 14/16 in little girls clothing, comfortably. that was after a lifetime of being very overweight. i
me at 148lbs in a child's tshirt.
started getting sick, and was first diagnosed with a raging helicobacter pylori infection that they said had probably been attacking my gut for years at that point.

they treated it, but i didnt get better. then they took my gall bladder out. and it still didnt get better. finally they diagnosed me with gastroparesis after an endoscopy revealed food that had just been chilling out in my stomach for over 72 hours already. for nearly ten years it was bearable. i threw up a few times a week maybe, or if i ate something really bad (deep-fried food, marinara sauce, etc). but i was functional and i just had to take some pills now and then, with an ER trip thrown in every so often for a "hard reset" when i got stuck in a vomiting cycle.

but things changed drastically in december 2011. my girlfriend and i ordered chinese food. all i had was white rice (i was never much of an adventurous eater), but we both got really terrible food poisoning and spent the following week in that special hell known only to those who have gotten really terrible food poisoning. at the end of the week, my love got better. but i never did. that bout of food poisoning set loose something in my body that i am still battling to this day. melodramatic phrasing aside, it truly changed my life forever, in ways i could have never imagined beforehand.

me at 148lbs again.
at that point i weighed probably somewhere around 250 or so. a lot for somebody my height and build. the jump from 148 to 250 came mostly from risperdal, but also some other psych meds plus spending a LOT of time locked up in a psych ward for weeks at a time (with no physical activity at all beyond walking from my bed to the cafeteria to group and back again) contributed as well. so, whatever. that made me morbidly obese and i was unable to lose that weight again.

much to my chagrin, even though i was throwing up every single day sometimes more than 20 times in a 24 hours period, i was *gaining* weight.
me at max weight, with a swollen "GP"
belly after eating a few bites of egg.

because of this i had a lot of doctors tell me, "well, you must be keeping something down. you're gaining weight, and your cholesterol, which was previously fine, is now off the charts." honestly for a bit i thought i was going crazy. but i finally got sent to a GI who was more concerned with my health than my weight, and my first NJ tube was placed, and suddenly i was able to function again. i wasn't even on formula at the time--just getting my meds through the tube improved my quality of life vastly.

up until a little less than a year ago (about winter 2013 or so, through summer 2013) i more or less maintained my weight. and even my labs, though they were borderline, were still just barely within normal range. for all intents and purposes, my body was telling my doctors that i was fine. but of course, i wasn't really. in march 2013, after almost a year of having NJ tubes in (for a total of 5 different ones over the course of 11 months), my GI placed the GJ tube, and we finally got approval for the proper formula and i was actually running feeds daily and it was all good.
more calories = losing weight?!

i was getting more nutrition than id ever had in my life (since i was a baby ive been a very picky eater and only eaten mostly carbs, even well before i was sick) but i was losing weight. how could such a thing even be possible?! because for the first time i was getting regular nutrition-not just calories, but all the vitamins and nutrients and micro-nutrients--my metabolism was like "whoah. dude. so sorry, i didnt realize i was supposed to be doing stuff. ill get right back on that." and it kicked in and started burning away the weight. my cholesterol labs went back into normal/low range as well.

it's actually pretty simple. when the body goes into starvation mode, it holds on to absolutely everything you put in it. a healthy body gets food regularly, separates the crap from the good stuff, absorbs the good, and throws the crap out (literally turning crap into actual crap.) but when you're not giving your body nutrition on the regular, your body goes into survival mode and is basically yelling at all of your organs, "guys! guys dont get rid of that! i dont care where you store it--stick it in an elbow or something, but we need to hang onto that. i need that, so dont get rid of it." and so your body, knowing that it's not getting fed regularly, becomes an extreme hoarder and it doesnt get rid of anything.

and of course, you're also dehydrated. so the body starts holding onto that as well. and when it gets to the point where you're not taking in much of anything, your body once again panics, and it starts digging into all that crap it stored up, the emergency winter supply of fat (fun fact: a person cannot BE fat. fat is a layer of a greasy-ish substance that forms under the skin, also known as 'adipose tissue'. the idea of a person literally being fat is slang and also inaccurate and mean.)
medicine, yay!

so, when the body panics and starts eating all the fat it stored away, it produces cholesterol as a by-product of that self-cannibalization. many people who are starving will see a sometimes serious jump in their cholesterol, and if, like me, their primary dr at the time is a doofus, he will tell them to stop eating fried foods, which is probably the least helpful advice for that situation ever.

so because i ramble lets recap. in the third person because it's fun to talk like that.
  • lissy is throwing up a lot and cannot hold food down.
  • lissy's metabolism panics and orders lissy's body to start holding onto every single cracker, popsicle, and grain of salt lissy does manage to keep down.
  • this goes on for awhile until lissy's metabolism realizes "well, we can't stay alive on crackers." and orders the other organs to start cannibalizing as much of themselves and each other as possible.
  • lissy's cholesterol goes up and lissy is still overweight, so nobody takes lissy seriously.
  • lissy gets sicker and sicker until she can no longer function, and ends up in the hospital.
  • lissy finally finds a doctor that understands this process, and they put a feeding tube in.
  • lissy starts getting nutrition, and GAINS MORE WEIGHT. this is because her metabolism is still on alert level red. it hasn't realized that the nutrition will keep coming, so it's still holding onto absolutely everything.
  • after a bit, though, lissy's metabolism realizes, "oh. this isn't temporary, guys. it looks like things are okay." and drops the alert level down from red "severe" back into blue "guarded".
  • with the alert level back down, lissy's organs stop cannibalizing themselves and every spare bit of fat they can find, and rapidly lissy starts losing weight, because her body has realized that it doesn't need to be a hoarder anymore and called the sanitation commission to clean things out with a bit of help from miralax and fleet.
  • lissy's weight loss slows and her cholesterol is back to normal. she's still chubby because she's a chubby person and always has been, but her body is functioning the way it's supposed to (more or less), and it has begun to lose weight at a rate of a few lbs here and there--a nice, healthy, SLOW, weight loss.

[PSA: fast weight loss is a very, very bad thing. no matter how healthy you think you're being when you lose weight, if you're losing weight fast, it can be extremely dangerous. healthy weight loss is no more than 1-2 pounds per week. speaking strictly calorically, a reduction of 500-1000 calories per day causes weight loss of
1-2lbs a week. anything more than that can be very dangerous and in some cases, life threatening.]

now, last year, when my nutrition crashed again due to the eosinophilic disorder and the incredibly harsh formula i was on that i could not tolerate, i was taking in basically nothing--not even the eat-and-puke cycle we're all so familiar with, i just flat out was taking nothing in because my body just became too weak to be vomiting 20+ times a day again. during that time (a period of about 3 months or so), i lost 70 lbs. which is very, very unhealthy and dangerous.

i suspect that because i was getting less than 500 calories a day, my body pushed right past the "hold onto everything" panic and just kind of gave up. at that point i was told that if we didn't get a grip on it very quickly, i didnt have a choice and was going to have to go on TPN (that's IV nutrition, generally given through a central line, for those playing the at-home version of this game.) thankfully my GI discovered through scope biopsies that i had eosinophilic gastroenteritis. (for those who dont know, i sugest checking out APFED to learn more about eosinophilic disease. but to give an idea, ive always referred to it as "the allergic-to-everything disease" because thats basically what it is--EoS provokes an immune respose from the body to anything and/or everything and while it really does vary what "safe foods" there are for
tubes are beautiful because being alive is beautiful.
each person with a form of eos, in general people with an eosinophilic disease's list of unsafe foods is much, much longer than their list of safe foods. there are people with eos who literally cannot eat any food at all and many who can only eat one or two types of food.)

i was given steroids and placed on a hypoallergenic elemental formula, and again, the weight loss plateaud.

currently i am still on the stereoid. i still have a GJ tube and am still on the elemental formula, but i am once again not doing so well with it. so even though i am STILL overweight--despite going from a maximum weight of 275lbs down to my current weight which i will not share--i am still pretty sick, and our priority right now is to get me to a place where i can run feeds regularly again.

but throughout all of this, my labs have never shown that i was starving (because i wasnt--i had lots of fat for my body to cannibalize, which kept my labs in the normal range, something that would not likely happen for someone who was thin to start with). i have never been even a "normal" weight for my height, never mind underweight. i have had a lot of people not take me seriously because hell, how sick could i be if i was so big?

and for the grand finale, even all of that set aside--one of the biggest issues with gastroparesis is vomiting. some people dont vomit, but most GPers do. and every single time a person vomits, they are doing damage to their stomach, esophagus, throat, teeth, and even their muscles, spinal cord, and believe it or not, eyes. vomiting is a very violent thing, and the body is only meant to do it in order to get rid of something that is toxic, such as spoiled food or poison. prolonged vomiting can and does cause all kinds of really serious and life-threatening issues.

- a mallory-weiss tear can cause internal bleeding so severe that a person could bleed to death interally before they even realized anything was wrong.
thumbs up for tube feeding!

- forceful vomiting can cause blood vessels in the eyes to burst and damage your eyesight (my eye dr regularly checks my eyes with every tool at his disposal because he is concerned about exactly that--something i didn't evne know was possible until he told me it was.)

- the acid your body produces that comes up every time you vomit does more damage than lindsey lohan on a bender. it strips the teeth of enamel and can cause tears and ulcers throughout the entire digestive tract.

- chronic dehydration can lead to all kinds of problems runing the gamut from UTIs to heart attacks to total renal failure. it also means there's not a lot of moisture in your intestinal tract and can cause obstructions, anal fissures, bowel tearing, external and internal hemheroids, bowel impaction, polyps, and the combination of all these side effects can lead to SIBO and other problems that can eventually lead to inability to voluntarily move one's bowels, necessitating ongoing laxative use and in some cases surgical repairs or the addition of an ostomy to allow the expulsion of waste.

- constant vomiting can also cause cancer in all the places it goes through: stomach, esophagus, throat, mouth--even the sinuses and ears by way of the throat. other complications can cause cancer and other serious issues in the other direction as well.

- sleep vomiting (something that i and many others have experienced) can lead to death by aspiration. (choking to death in one's sleep.)

- repeated vomiting strains the body and can cause spinal injury (i can't count the amount of times that i've thrown my back out just from vomiting), muscle strains and tears, bursted blood vessels, electrolyte imbalance, severe migraines, nerve damage, elevated blood pressure, tachycardia, heart attack, fainting, anyeurism, stroke, seizures, and death.

the bottom line is that a person with gastroparesis (or similar conditions) has all of the same risks and complications as someone with anorexia nervosa and bulimia combined, with a bunch of extra risks and complications thrown in just for fun.

people do not die from gastroparesis. gastroparesis is not a terminal illness.

but they do die from complications due to gastroparesis. and most of those complications are related to long-term damage from prolonged and violent vomiting, ongoing starvation, and simply having old food lingering in the digestive system for several days or longer.

gastroparesis is not about weight. 

its about the hell your body goes through as it tries to keep you alive.

i fight like a girl and i always will.

Thursday, May 8, 2014

dinner for mom!

 i am the queen of making fancy meals for around 5 bucks a head. less because i dont have to buy spices etc every single time i cook or whatever. i wrote out my methodology for a friend, but i thought, with mother's day right around the corner and money being tight for a lot of people, i would share it a bit more publicly for those who want to celebrate with a nice dinner but your wallet's a little thin right now.

the prices are estimates, of course, because prices vary across different states. but in general all of these items are very cheap and you may even have some already in your kitchen. i included two different options, one which involves making your own (very basic) spaghetti sauce and one using jarred sauce. i do most of my shopping at walmart, but some of these things if not all of them can also be gotten from the dollar tree, dollar general, or a grocery store---but the grocery store will be a bit more expensive. either way both options should cost you less than $15 to make.

option 1:

  • 1 lb box of spaghetti/angel hair/whatever - $0.98
  • 1 large can of tomato sauce - $0.88
  • 1 large can of ttomato puree - $0.88
  • 1 small can of tomato paste - $0.88
  • 1 lb of chop/ground beef/meat - $3.00-$4.00
  • 1 loaf of italian or french bread - $1.88
  • 1 canister of grated parmesan cheese - $2.48
  • butter/margarine/butter substitute - $1.98
  • some spices if you don't have any already - $.50-$2.00

spaghetti sauce
  • mix the tomato products in a pot
  • add spices (oregano, garlic, onion, italian seasoning, basil, pepper, whatever you like)
  • simmer on low heat for as many hours as possible. add a tablespoon of baking soda to cut the acid if desired.
  • brown the meat in little chopped up bits and put the same spices you used for the sauce in the pan (make sure there's no red visible anymore)
  • dump the browned spiced meat AND the liquid drippings into the sauce pot. (trust me. the drippings are where all the flavor comes from.) 
  • continue simmering the sauce. it should be on the stove for at least 3-4 hours before you serve it to really get the most taste.
garlic bread
  • mix up some melted butter, grated parmesan, and garlic powder or garlic salt in a small cup or bowl
  • cut the italian bread into 1-inch-thick slices, without cutting all the way through to the bottom of the loaf.
  • spread the butter mixture between every slice, wrap the whole thing in tin foil 
  • stick it in the oven at 250-300* depending on your oven for about a half hour to an hour, checking it regularly to make sure it doesnt burn. 
  • once the inside is a nice light brown (the slices will be slightly crispy but softer in the middle) it's ready to go.

spaghetti/angel hair/linguine/whatever
  • boil some water in a pot and put a capful of extra virgin olive oil in the water if desired
  • cook the spaghetti. (that was super easy, right?)

option 2:

  • 1 lb box of spaghetti/angel hair/whatever - $0.98
  • 1 jar of premade spaghetti sauce (i prefer the "meat flavored" prego) - $1.88
  • 1 loaf of italian or french bread - $1.88
  • 1 canister of grated parmesan cheese - $2.48
  • butter/margarine/butter substitute - $1.98
  • garlic powder or garlic salt - $0.98

follow the directions from option 1, skipping the make-your-own-sauce bit.

light some candles, turn on some easy listening music and voila, you have a super fancy dinner for less than 15 bucks! :)

and yes, in case anyone was wondering, i am terrific while watching the price is right. if i ever got on that show i would win ALL the things because i know exactly how much pretty much anything costs.

my girlfriend calls me and asks "how much does this thing cost" and i can tell her right away. once we were at pier one and she was buying xmas presents for all her co-workers and non-family obligations (about 20 people total.)

she looked in the basket when she was done and said "how much money do you think i spent?" and i hadn't even been with her when she picked out half the things--i was off wandering on my own--so i didnt even see any of the prices. but i looked over her basket of presents, gift bags, wrapping paper, gift tags, cards, ribbons, etc for all 20 people, and i said "around $215 bucks." she paled and said there was no way. i just shrugged. we got up to the register, they ran her up.. total including tax? $211.78.

she just looked at me. and now its like a party trick.

and hey, that was a lot of money but broken down she only spent about 10 bucks a person and included the gifts themselves, the wrapping, cards, etc. not too shabby.

any way, i hope you all enjoy the upcoming holidays and i hope somebody out there benefits from this post.

until next time, dear minions. :)

Friday, May 2, 2014

Book Recommedations

this entry will be dynamic as i come across or remember new books i want to add. i will update this list as necessary, adding other categories and more books. this list is by no means complete at all--these are only books that i have personally read or had enough exposure to, to know they dont suck. :)

it only contains categories i am interested in, and some of these books span more than one category but are only listed once. i might eventually add reviews and links for them, but i'm not sure. anyway, i hope this list helps someone find new books to love!

  • the hunger games (the hunger games #1) by suzanne collins
  • catching fire (the hunger games #2) by suzanne collins
  • mockingjay (the hunger games #3) by suzanne collins
  • divergent (divergent #1) by veronica roth
  • insurgent (divergent #2) by veronica roth
  • allegiant (divergent #3) by veronica roth
  • uglies (uglies #1) by scott westerfeld
  • pretties (uglies #2) by scott westerfeld
  • specials (uglies #3) by scott westerfeld
  • extras (uglies #4) by scott westerfeld
  • on the beach by nevil shute
  • biting the sun by tanith lee

  • the best little girl in the world by steven levenkron
  • the luckiest girl in the world by steven levenkron
  • wasted by marya hornbacher 
  • prozac nation by elizabeth wurtzel
  • girl, interrupted by suzanna kaysen
  • it's kind of a funny story by ned vizzini
  • the virgin suicides by jeffrey eugenides
  • looking for alaska by john green
  • bad girls by alex mcaulay
  • such a pretty girl by laura wiess
  • can't get there from here by todd strasser 
  • the silver linings playbook by matthew quick
  • broken china by lori aurelia williams
  • alt ed by catherin atkins
  • you remind me of you by eireann corrigan
  • icy sparks by gwyn hyman rubio
  • house rules by jodi picoult
  • prep by curtis sittenfeld
  • veronica decides to die by paulo coelho
  • look me in the eye by john elder robison
  • violet & claire by francesca lia block
  • the hanged man by francesca lia block

  • the fault in our stars by john green (cancer, amputation)
  • side effects by amy goldman koss (cancer)
  • my sister's keeper by jodi picoult (cancer)
  • handle with care by jodi picoult (osteogenesis imperfecta)
  • the doll hospital by james duffy (unknown serious illness)

(gay, lesbian, bisexual, trans*, queer/questioning, asexual, poly, et al)
  • girl walking backwards by bett williams
  • dive by stacey donovan
  • keeping you a secret by julie anne peters
  • empress of the world by sara ryan
  • annie on my mind by nancy garden
  • grl2grl by julie anne peters
  • am i blue by various (anthology including francesca lia block & bruce coville)
  • i was a teenage fairy by francesca lia block

  • wait til helen comes by mary downing hahn
  • the doll in the garden by mary downing hahn
  • the "fear street" series by r.l. stine
  • the midnighters series by scott westerfeld
  • the last days by scott westerfel
  • peeps by scott westerfeld
  • leviathan (leviathan #1) by scott westerfeld
  • behemoth (leviathan #2) by scott westerfeld
  • goliath (leviathan #3) by scott westerfeld

  • watership down by richard adams
  • siddhartha by herman hesse
  • dangerous angels by francesca lia block
  • the secret garden by frances hodgson burnett
  • a little princess by frances hodgson burnett
  • so yesterday by scott westerfeld

Sunday, April 27, 2014

Autistic Shutdowns: A Visual Aid

i wanted to repost this here because it's really, really good and just in case something goes hinky on tumblr i wanted it to be preserved forever!

i always give credit where credit is due, so the images in here belong to the OP, maitlands@tumblr. you can view the original post here.

Saturday, April 19, 2014

Down the Autism Rabbit-Hole and Back Out

It will probably not come as any kind of surprise to my readers that many of my friends, like myself, are Autistic. It may come as a surprise to some people that the majority of Autistics (or ‘Auties’ as I affectionately like to call us sometimes) bear no resemblance to Dustin Hoffman in ‘Rain Man’ whatsoever.

Recently a conversation took place on my personal Facebook wall. It involved discussion about various feelings and behaviors, and whether or not they were autistic in nature. At one point in this conversation a dear friend of mine who is an adult that does not yet have an official diagnosis of an Autism Spectrum Disorder began questioning himself. His last comment on the thread before I read it pulled at my heart metaphorically and inspired this entry.

i'm falling down the 'am-i-really-autistic'
rabbit hole again, somebody pull me out
- Name Withheld, Facebook

The hurdles of getting a diagnosis as an adult are seldom worth jumping unless you need an on-paper diagnosis for school or work related accommodations, to qualify for disability-related benefits, or simply for your own peace of mind. Adult testing is mostly based on self-reporting and can be incredibly expensive. To date, most insurance companies will not cover it. As such, it’s very common for spectrum adults to either be self-diagnosed or diagnosed without specific testing by a physician, psychiatrist, or therapist.

Most of the information on autism is geared towards the parents of (most often male) autistic children; there is very little out there for adults, particularly female adults. The result of this lack of information and resources has been that many autistic adults stumble around in the dark blindly, trying to find their place in the world. I reject everything about Autism $peaks including the blue puzzle piece, but I find the more general rainbow jigsaw to be an accurate representation of autistic life—and not in the way most people probably think. I am not a puzzle to be solved, and I am not a puzzle piece that doesn’t fit. Rather, my spectrum diagnosis was a piece of me that linked a whole bunch of things about my personality together. Suddenly I ceased being a weirdo, a freak, quirky, moody, and anti-social. Suddenly, I was normal—just my own brand of it.

"I am not 'retarded.'
I'm just as special as anyone else,
maybe even a little bit more.
People who call me that are ignorant
fools or retarded themselves."

- Luke, The Story Of Luke (2012)

For many adults, the initial recognition of their autism can be a relief; however it can also be a source of pain, confusion, and constant questioning of one’s identity. Many spectrum adults, including me, find themselves at the start of their journey over-analyzing every feeling and reaction they’ve ever had. They desperately dig through their childhood memories, looking for autism or looking for experiences that ‘prove’ they are not autistic, depending how they feel about being autistic. 

This panicked rifling through your mind can cause incredible amounts of stress, depression, panic, guilt, fear, and can even induce PTSD if the individual was raised in an environment where they were punished verbally or physically for autistic behaviors. They might struggle with not feeling “autistic enough”, especially if their conversations about autism mostly take place with NTs (NeuroTypicals: non-autistics) or if they have few to no conversations about autism at all. Their behaviors may not match up with the behaviors of other autistic people they read about or know, and they may question the entire state of their being based on that point.

And into the rabbit-hole we go, and we can only hope that someone who cares will reach a hand down and help us climb out before we fall in too deeply.

And so this is my hand, reaching out to anyone who is gazing into that abyss and afraid they will slip. This is my hand, with all the love in the world and every inch of my soul, reaching out to hold onto you—whoever you may be—and help you glimpse the light even if just for a moment. Because sometimes that’s all you need; one moment of someone caring enough to reach out. I’m reaching for you, my autistic brethren. You are not alone.

This guy's walking down a street when he falls in a hole.
The walls are so steep, he can't get out.
A doctor passes by, and the guy shouts up,
"Hey you, can you help me out?"
The doctor writes a prescription,
throws it down in the hole and moves on.
Then a priest comes along, and the guy shouts up
"Father, I'm down in this hole, can you help me out?"
The priest writes out a prayer,
throws it down in the hole and moves on.
Then a friend walks by.
"Hey Joe, it's me, can you help me out?"
And the friend jumps in the hole.
Our guy says, "Are you stupid? Now we're both down here."
The friend says "Yeah, but I've been
down here before, and I know the way out."
- Leo McGarry, The West Wing (2000)

Please take this to heart.

NOBODY gets to define autism beyond the diagnostic criteria except the autistic person themselves. (And while I will mention again how much I despise and am against everything autism $peaks stands for, their coverage of the DSM-5 criteria is a helpful little page and you can view it here, although be sure to note that the Autism Spectrum criteria is a bit further down the page.)

Talk to other adult autistics. If you don't find other autistic adults in varying numbers that share any given behavior with you, I will film myself eating my fancy black and pink fedora and post it on YouTube. I promise you that.

The major mistake that people in general make is thinking that autism is a box, and you can just put all the autistic people inside the box and they'll all fit nice and neat, filed away quietly. But in real life we are every bit as varied as anyone else. A popular comparison I see (and a major point of the conversation that sparked this entry) is the various forms of stimming, because we have been told over and over again that stimming is simply rocking or flapping your hands.

The truth is that "stimming" is any repetitive motion brought on by extreme emotion: both negative and positive.

I have good stims and bad stims. Some of them are even the same stims. I might rock to comfort myself in a period of anxiety; I might rock because I’m so excited about a new dinosaur documentary that I can't even contain myself. When I am stressed I gnaw the heck out of a pacifier. When I am happy I clench my teeth and stretch my head to one side slightly. When I am happy, sad, bored, lonely, excited, in physical pain, sleepy, grumpy, Dopey, or Doc--or pretty much any other emotion at all (meaning I do it constantly), I clench my toes and sometimes hands.

When I am happy, I tap or drum my hands on my thighs or knees in a somewhat random pattern; when I am agitated I tap my hands on my thighs or knees rhythmically. In my autism, happiness is chaotic in a wonderful sort of way that I can never put into words, and rhythm, routine, and patterns bring me immense comfort when I am upset. That doesn’t mean all autistics function the same way. It also doesn’t make me any less autistic that my good feelings are chaotic and messy and some other autistics may experience good feelings in the same rhythmic and predictable way that I experience bad feelings.

Don’t ever make the mistake—any of you—of questioning your self-identity simply because you experience something differently from someone else, or because a behavior, urge, or feeling of yours isn't written down in a textbook somewhere.

Ole Golly from 'Harriet the Spy' (1996) once said, “There are as many ways to live as there are people in this world.” Autism isn't any different. There’s as many different ways to "be autistic" as there are autistics. You are you and you are wonderful and unique and there's nobody else exactly like you and there never will be. But I can guarantee you there are thousands of people, if not more, that share any given behavior, feeling, or urge that you have; whether they are autistic or not.

And if that still isn't enough to convince my fellow auties of how awesome you are, then it's time for you to read this beautiful article and remember that you are super great, and autism can be and often is every bit as joyful and wonderful as it is frustrating and upsetting.

There is no right way to be autistic.

There is no "good" or "bad" autism.

There are no "good" or "bad" autistics.

There are just good and bad days. Good and bad feelings. Good and bad events.

Life, and how you survive it.

 note: you may not reprint this blog entry anywhere
without my express permission. you may of course
share this link anywhere you wish--in fact, please do!

you there! yes you! you're awesome!