If You're Unhappy & You Know It, Shut Your Mouth

there's been a lot of discussion lately about assisted suicide, a lot of it stemming from a movie that's coming out called "me before you" which i know nothing about and so will not comment on directly. instead, i want to talk about how disabled people talk about and treat other disabled people. id like to talk about the voices that go unheard in our struggle to be treated with respect and dignity, and mainly id like to talk about the multitude of people, both SJW's and disabled people themselves, who post about how outraged and indignant they are that someone could even hint at the idea that disabled life isn't worth living.

i think people should be a little more cautious in their outrage and indignation with this. i think that in a lot of ways, other disabled people are sometimes even worse than healthy people at criticizing and silencing other disabled people. i think there's a really, really bad habit in our community of being offended when someone else from within feels they would rather be dead than live with their disability the rest of their lives. just like most other marginalized groups, we are very good at eating our own. sometimes we go so hard with the "im proud to be a tubie/wheelchair-er/survivor/warrior/whatever" stuff that we can make other people who are those things feel completely invisible because they don't feel that way and are being told they should. we silence them by saying, "youre not doing anything for the cause with all your talk about disability sucking. sit down."

i didn't see it before, but it rapidly became very clear to me when i tried out various support groups/forums for the surprise colostomy i had found myself left with. i didn't stay in any of them for long, because i very quickly realized that if anyone else legitimately felt the way i did about it--that i would rather be dead than live with it--they weren't speaking up. in fact, it was taken as a personal offense that i would even dare think of such a thing, and i was instructed unanimously to seek psychological help, though the tone of this 'advice' ranged from sympathetic to downright nasty, including one person who encouraged me to go ahead and die because people like me are the reason there's a stigma around ostomies and everyone else would be better off without my voice being heard.

and while i understand academically at least, why people might get their feathers ruffled, i dont understand it on a personal level. it is not one and the same thing to say "i personally do not feel that MY life is worth the price tag i have to pay for it" and "everyone else in my situation isn't worth the price tag either". people react as though it is a given that if you dont feel your own life is worth living because of Reason X, theirs isnt either. it doesn't seem to come up very often that while you may share a reason, you don't share a life. and thanks to the popularity of the pain olympics, we can't point out that our lives are different, because its throwing down the gauntlet for everyone to tell the best sob story that ends in triumph over adversity.

i have never felt so alone in my life as i have since december. there is *nowhere* for me to turn where i can feel accepted and validated. my feelings about the bag have not changed, i merely stopped talking about them because all it has brought me has been grief and guilt and arguments. it turns out a couple of choruses of "im unhappy and i dont want to be here" is even more taxing to the soul than "99 bottles of beer on the wall". of course there are people who have been very supportive of my feelings, but they aren't dealing with my situation, and there are people in my situation who are not supportive of my feelings, and there has been no overlap between the groups. even the people ive spoken to or post-lurked on who also hate their ostomy still have other factors and seem to feel the reward is worth the cost. i dont. i never have, and i never will. the one person i love more than anything is why i stay--because i love her, and almost losing me nearly killed her as well, and i care about her well-being too much to voluntarily do that to her again. but i am not grateful to be here.

and that doesn't mean i dont want to live, it means i dont want to live like this. i don't want to care for this thing, i don't want to live with the godawful side effects and constant misery and pain. i don't want to have it on my body. and frankly, it upsets me that anyone could tell me that it makes me ungrateful, it makes me selfish, it makes me a blight on the disabled community because my god what kind of message am i sending. i didn't think of myself as a messenger, but i am constantly told otherwise. id better change my tune or stop singing, because the disabled community at large is more important than me. i am not the greater good, and if i won't sing in harmony with the rest of the chorus, i need to sit down.

a huge factor in play here is also that i wasnt given a choice in the matter. i hear a lot that im not alone in that, that nobody would choose to have an ostomy, but im not saying i didnt have a choice because the alternative was death--that's just having a choice you don't like. i didn't get to decide to live or die, that choice was made for me. i never consented to having it done. i had no idea that it had been done. it had never even been something that was ever brought up by any of my doctors in any of my appointments my entire life. it was never considered or discussed, and while i have a lot of fears regarding things that could go medically wrong with me, i never feared this.

but i didn't find any allies even among others who woke up one day to find themselves suddenly with this bag they weren't prepared for. they were all happy to be alive, too. they all said i needed to "get some help" and assured me that how i felt would change, and i'd learn to appreciate the bag and discover that i could still have a super awesome life. i would adapt and find a new path and be grateful to still be alive. i know it was well-intentioned, but it didn't bring me up. it felt like i was just sinking deeper into the quicksand and everyone else was standing around the pit talking about how they swam out of it and i would be able to do it as well, instead of reaching out to help me. maybe they all really were just coping that well with their stuff and something is wrong with me. or maybe they're not coping that well at all and they're afraid if they tried to help, theyd realize they were still in the pit all along.

cause the thing is, when the bulk of the disabled community screams as one voice about how proud they are to be disabled and what a warrior they are and how strong their will to live is.. the ones who arent screaming find themselves on the outside of the community. like theres something wrong with them because theyre not proud of their struggle or because they can't overcome their disability and it looks like everyone else has, and everyone else is handling it better than they are. so as a group we agree to present a united front by pretending we're standing on the edge of the pit even if in reality we're up to our eyeballs.

when healthy people shut you out, it sucks, but hey, we already knew we weren't part of that world anyway and we can just go meme about it and laugh with our fellow spoonies. there's a solidarity in being a marginalized group. but when its other disabled people shutting you out, you find yourself *very* alone in the world. at least the ring around the pit is talking to you while you sink so you're not drowning by yourself.

 i wish more people would consider the implications of how what they're saying makes some of their fellow spoonies feel. because to me, as i scroll through dozens of posts about not just this movie, but just in general about ableism, about pride, about struggle and the inevitable triumph, overcoming, fighting, and warriors, what i hear is a cacaphony of voices all telling me that my feelings are offensive and stupid and they dont matter because there's a larger picture. there's something*wrong* with me because i can't put on a smile and a tshirt that says "proud to be an ostomate" and stop making people uncomfortable by being honest.

it reminds me  of how i felt when i figured out that i was gay, and i was constantly on guard against letting anyone know that. the real me was locked away inside, because i had to protect her even though i was ashamed of her and wished she'd just stop being awful and go away. and all these years later, ive found myself back in the closet again, lying to everyone and swallowing my truths so that i wont be rejected for feelings i can not change or control. its fucking lonely. and while obviously im *glad* that most people find a way to overcome their illnesses, adaptive devices, and cyborg parts, or at least make peace with them, that simply isnt true of everyone. it feels awful enough to spend every minute of every day wishing for an end to this perpetual physical misery without also feeling like you're a terrible, selfish, broken person for not being able to cope with it better.

we need to make it okay to not cope. we need to make a safe space for people to say, "im not coping" without being told theres something psychologically wrong with them and they need to be medicated. we need to listen to each other and really, truly care what the other person is saying. we need to recognize that its OKAY to not feel like a warrior, that its OKAY to not be comfortable in your own skin, and that its OKAY if its not for reasons listed in the DSM. we need to make it OKAY for people to talk about death, and to want it to happen on their own terms. we need to make it okay to not be okay, and we need to stop making the situation worse by telling people who aren't okay that they need to shut up and stop making disabled people look bad. if we want healthy people to stop looking at us as poster children, i think a good start would be not looking at each other that way.

i don't want to be expected to live up to anyone's standard of disability or illness--healthy or otherwise.

im not a tubie. im not an ostomate. im not a spoonie or a GPer or a mito warrior. im not sick. im not disabled. i am not a spokesperson or representative of any of these communities. im just me. im just a girl with a lot of medical problems and no fight left in me. im just a girl who isn't coping but does a really good job pretending that she is. im just a girl being held prisoner in a body that won't work. i will never, ever be able to have the life that i want, and i do not want the life i have. i dont want to pay the price tag thats attached to this beating heart--but im doing it anyway. im just a broken girl who's still *here* and wants that to just be enough.

im just me, and i am not okay.

okay?

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 ilovebacteria.com.

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.

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:

ingredients

• 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:

ingredients

• 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. :)

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!

via icanhas.cheezburger.com

Rainbow Smoke Asian Cigarettes?

one of my favorite things to do is research. people in my life know that if it exists on the internet, i can find it. and it's fun for me. i can spend hours looking for the most obscure things, and i find it very calming.

today i saw a post on a dear dear friend's facebook wall. my friend, pixi, is well known for being the queen of all things rainbow and her friend had shared a very cool image of some rainbow smoke, and a very beautiful cigarette pack. it seemed to be photoshopped, but it piqued my interest and it turned out i was far from the first person on the internet to rabidly search for this amazing product.

unfortunately, this image is, in fact, photoshopped. but wait! the smoke in the lower image is what's photoshopped. the top image? totally real. that is an actual pack of cigarettes. don't believe me? check these out:

yep. this is a real pack of cigarettes. and a real carton.

the cigarettes are from china, and they're called "08 pride" (pride is the english translation of the word 自豪 or "zìháo".) the barcode number is 6901028025607 and the packaging included the web url pride56.com, which is no longer an active site. they were manufactured by the chongqing tobacco industry co., ltd. in chengdu city, sichuan and include the customer service phone number 800-8866622. and yes, i said were.


from what i can gather (bearing in mind i don't speak chinese and things DO get lost in translation!) this particular design has been discontinued as the original company was overtaken. "08 pride" cigarettes are still manufactured by china tobacco chuanyu industrial corporation in chengdu city, sichuan. they seem to have retained the same phone number.

unfortunately, "08 pride" cigarettes don't look like that any more. the design is similar, but lacks the rainbow-y holographic-y accents.

and no, neither edition of this cigarette blows rainbow smoke. however, if blowing rainbow smoke is what you're after, there are about a billion filter tips and e cigs to sate that desire.

peace out and smoke 'em if you've got 'em!

thankful.

i have so much to be thankful for this year.

first, i want to say that above everything else i am thankful for the ENDLESS kindness i have been shown. i cannot even begin to name all of the people who have selflessly helped me, sent me supplies, stayed up late talking to me, guided me through this maze of illness, sent cards, gifts, made things for me. in most cases these amazing things have come from people i have never met in person. in some, it has come from people i have never even talked to. i am absolutely blown away by the outpouring of love, of time, of energy and kindness that i've experienced, not just this year but througout my life. every time i have fallen down or seen myself stumbling, someone has stepped to my side and taken my arm and helped me up. especially since i have been here in new jersey, essentially alone and a thousand miles from my family.

"I am calling from a payphone,
twenty three hundred miles away.
Bad things I can not even say.
If not for the kindness of strangers,
I would not be alive today."
- Bif Naked, Story of My Life


which brings me to major point #2---my family. you are all insane, every one of you. you are crazy people. i come from a long line of nutjobs. but my god, how much i love you all. i see so many people who have been rejected by their families, or had no choice but to reject their families. people whose families aren't involved or simply dont care. and every day i am thankful that as batcrap crazy as you all are, you're always here for me. i always know in a crisis that my family will step up, no matter what else is going on, and pull my butt out of the fire. i love you all--whether we share blood or don't, i know that we share love which is a much stronger bond anyway.

i am thankful for j. i wouldn't be alive right now if it wasn't for her, and i don't mean that figuratively. for the past 13+ years she has been at my side, holding my hand and keeping my head above water.

i am thankful for every last one of you reading this right now. i am thankful for my best friends, i am thankful for my friends, i am thankful for every one of you--my LJers, my GTLers, my former-TAA'ers, my whedon-ers, and everyone in between.

and now the smaller things i am thankful for:
- that i live in a time where i don't have to die because modern medicine has designed tubes and bags and formulas and medications that keep me alive, even if i'm not always functioning at the higher levels.
- that i have a medical team that honestly cares about me and wants to help.
- that i have the opportunity to go to school and that i am able to get the accomodtions i need to make this possible.
- i am thankful for marinol. as much as i hate feeling stupid, marinol has enabled me to eat small amounts of certain foods by mouth and kept me off TPN when things were at their worst.
- i am thankful that i am slowly finding what works for me and becoming able to spend less of my life focused on my medical situation.
- i am thankful for the three beautiful loving cats that are currently cuddled up to me trying to stay warm, even if occasionally they are furry little abominations who drive me nuts.
- i am thankful that despite the abuse i heap onto it and the fact that i am well overdue for an oil change, my car---which is solely responsible for my personal freedom--has held up.
- i am thankful for all of the little things in life that make me happy--dinosaurs, sara bareilles, hunger games, harry potter, john green, francesca lia block, joss whedon, jennifer lawrence, west wing, super soft cuddly things, sunsets, my favorite books and authors, my favorite comfy sweatpants.

and finally, i am thankful that i was lucky enough to know laura kostecki-howe, shea heribacka, haley stonehocker, joe 'koker' kayes, and shane cornwell. i carry you all in my heart every day, and i miss you all every day. sometimes the pain is overwhelming, but i try to remember how lucky i am to have known you, and that none of you are in pain anymore, and i try to let that comfort me. i miss you all, and i hope that somewhere out in the universe you're all there, waiting for our friends who are not doing so well, and waiting for me someday. keeping an eye on rontu, fiver, annabel lee, sweet j, christopher, and all the other furry family members that are no longer here.

my life is complicated, and sometimes it feels like its too much for me to handle. a lot of the time i am scared about what my future holds. but i am still here. i am still fighting. i am still screaming for a cure for all of us, every last one of us.

and i won't ever, ever stop.

Why you don't adore me?

Maybe nobody loved you when you were young
Maybe, boy, when you cry, nobody ever comes
- Sara Bareilles, Machine Gun

i want to talk about internet fakers for a minute.


it's been a big issue in the health community at large and it's a dicey situation. some people really are sick but exaggerate, some people aren't sick at all (physically). a big issue in the health communities to start with is what i like to call the Pain Olympics. this is where people compete with each other to see who has it worse, who's sicker, who's got better pain medication, who's stronger, who's braver, who's had more to overcome, who has more conditions. i am not really going to delve into that as i feel that is a topic that merits its own post. but given that this behavior is so common, it's often hard to weed out the people who are flat out lying from the people who are just really unlucky and/or just have an obnoxious need to be "the sickest".


it all comes down to the same basic thing, though. attention.there are many kind people on the internet, especially in the health communities, that want to give emotional support and  sometimes send gifts to people whose health journeys they follow. and the worse you are, the more attention you get. more page likes, more comments, more presents. this is appealing to people who crave attention. and for a physically healthy person who wants attention, pretending to be sick is enticing because online they can get all of the support, attention, and gifts without actually having to suffer.

the terrifying thing is that people like this never, ever stop. they get caught online or in real life, and they just move on and start all over. some more deviously than others. the latest faker making the rounds, who goes by Priscilla Louise Shaw, had the sheer audacity to completely copy and paste an entry about a battle with sepsis from a friend of mine's blog. this comes quite awhile after she was outed from the gastroparesis community. but for some reason she thought that people wouldn't remember her, i suppose, and so she has attempted to try to get back into the GP community.. by stealing a "status update" from a blog that is very well known in the GP community.

now, this woman it seems (if she's a woman at all) is dumb enough not only to continue using her name (if that's her real name at all) but also try preying on the same community more than once. thankfully, this makes her an easy faker to cope with--everyone knows she's lying, she's not allowed in the groups, and so the best she can do is try to drum up support on her personal FB and hope nobody in her real life calls her out on her BS. not all fakers make these very obvious mistakes, though. there's a lot of different approaches people take to faking. priscilla's is certainly the dumbest i've seen yet.

then you have people like pearl gannon who are also dumb enough to use their real name, but hop communities--and in pearl's case, are faking it in real life as well. pearl is also looking for a lot more than support; she is always "fundraising" for one reason or another, including trying to fundraise to pay for a service dog that she was supposedly getting from an organization that, it turns out, does not charge for their service dogs. when confronted with that information, she changed her page to say that it was to cover "travel expenses" for her to go to the organization.

then you have people like cara goodman, who after being caught faking cancer and AIDS both online and in real life, move on and create a whole new identity before striking communities again.

occasionally you have someone that stops doing it because they haven't got a choice (carissa hads/james puryear, who is in jail but not for faking illness on the internet) or because they are legitimately getting help for their issues (some of the stories on the warrior eli hoax blog, although who knows how much is true and how much isnt, as taryn [who runs it] is a pretty good liar herself as demonstrated here and here).

and then still others like karen murphy get caught, disappear from the internet, and are never heard from again... that we know of. my theory is these people also come back, but do a better job hiding their lies the next time around.

it's a terrible trend and it seems to be on the climb. (or maybe identifying fakers is on the climb. or maybe both.) i wound up taking a step back from the "finding fakers" game because 1. they never stop. 2. there's simply too many people that people are suspicious of and want investigated and half the time its just because they dont like the person or feel they ask for donations/gifts too often. 3. it's very difficult to find the truth. you have to count on someone screwing up and telling stories that dont match up or dont make sense medically, or stealing pictures or words from someone else. there's no way to get access to their medical records so there's no way to tell whats REALLY going on with them (as in the case of karen murphy, where so many are presuming that she has an eating disorder when there's no evidence to suggest she does. she may well be physically ill but we'll never know, and her page was a definite scam.)

and finally 4, which was mostly what i wanted to write about but i got lost in my own words again. there are always going to be people who believe them. it's not logical. it's not sensible. it's baffling to those of us who grasp the awfulness of what they've done. but there are always going to be people who believe them despite all the evidence. and there are going to be people that know they are liars, but stay friends with them anyway, mostly claiming altruistic reasons. (though im not sure how stroking someone's back and saying "its okay that you did this." is altruistic, it seems counterproductive for a person that needs mental help.)

in my case, the people from #4 were what finally drove me from investigating potential fakers. i was getting harassed and PM'd repeatedly regarding posts i made about both pearl gannon and karen murphy (who ironically i had nothing to do with and was in fact a victim of hers myself) and cara goodman (whom i also did not uncover, but i did re-expose her and also have been acting as liason-slash-mouthpiece for her most well-known victim and one of the sweetest people i've ever been lucky enough to know, catsnotcancer, so her side could be heard without her getting the harassment), and it got to the point where i was getting harassed every minute i was on facebook. so i left all that behind and made a new account.

i have a LOT of experience with this sort of thing and the best advice i can offer to anyone is to unfriend and block known fakers, and if someone on your friends list makes you wonder, tells stories that dont make sense, etc--beware. im not saying they're faking. i know a lot of people question a lot of things in my life, simply because i don't share all of the details and occasionally that works out so it looks like theres a "hole" in my story. so it can be innocuous. but guard yourself. especially if someone is asking for donations or gifts. if someone posts one time, you know, "this is my address if you want to send a card or something, that would really make me smile!" that's fine. but if someone is posting constantly asking for gifts and money, if disaster seems to strike on a regular basis.. if disaster seems to strike right around a gift-giving holiday constantly.. if every other day it's a big dramatic thing about whether they're going to live or die.. if it seems like its just TOO MUCH tragedy for one person.. these are all things that should raise a red flag and at that point all i can say is.. pay attention.

honesty is easy. you dont have to remember what you said. lying means you have to remember the details you gave. it's a juggling act. and eventually if someone is lying, they're going to drop a ball somewhere. and if you're paying close enough attention to them, you'll see it fall.

for a really well-written read on this phenomenon which has been coined munchausen's by internet, check out this article by cienna madrid.