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?

people are getting high, so let's criminalize the disabled.

 According to the agency, Kratom taken in low doses can give you a boost, making people feel more alert. But taken in high doses, the DEA warns, it can act like an opioid, making you feel euphoric and addicted.

- Lawmaker looks to ban [kratom] in NJ

the first thing you need to know is that the quack behind this is someone who makes his bones passing out methadone to addicts. because kratom is well-documented as a method of kicking opiate addiction. and if people are able to help themselves and chew a couple of leaves instead of being forced into dependency on expensive chemicals, dr. douche is out of a job and the pharmaceutical companies are out god only knows how much money.

and this? this. this may be one of the dumbest things i've ever seen:

“They should get rid of it,” said Brick resident Hannah Hall, “There are people getting high around here. Kids are dying.”

- Lawmaker looks to ban [kratom] in NJ

who is hannah hall? what does she know about anything? well, a cursory search is rather enlightening. ms. hall, who is in her 50's, knows a thing or two about the law, because in february of 2012, the brick resident was the subject of an arrest warrant.

Hannah Hall, 53, of Taft Drive, arrested by Sheriff’s Detectives S. Metta and J. Mercado on a Superior Court Warrant for failure to appear for sentencing on original charges of credit card theft. Hall was processed and lodged in the Ocean County  Jail with no option for bail.

- 7 Brick Residents Arrested in Sheriff's Sweep

so ms. hall feels that it is okay to steal someone else's credit card and then evade punishment for it, but has no tolerance for people getting high. it's all about priorities, i suppose.

pretending for a moment that ms. hall isn't a criminal who victimized another human being, i would be keen to ask her what kids are dying from kratom, in ocean county or anywhere else. i don't see a list of names attached to autopsy reports showing they died from using kratom. it seems odd to me that such an epidemic would go totally unreported, but ms. hall is the expert, after all.

we have to give the author of that article, christine duffy, some credit as well, of course. she did write the thoroughly unresearched article, post claims that have no basis in fact, and present ms. hall as some kind of kratom death expert. perhaps someone should ask ms. duffy if she often makes a habit of reporting unsubstantiated 'facts' on her twitter page.

---

i used to love my country. growing up, i wanted to serve in the marine corps. i taught myself about politics, government, and law from the time i was 5 years old. i was already using a wheelchair when i signed up for ROTC--knowing i would never, ever be allowed to commission--and nearly killed myself for a few weeks before a PT session that i refused to give up on landed me in the hospital.

even in the face of the many awful things my country has done, i still loved it, still felt loyalty to it. i was still willing to sign up to die for it. i crawled across a field on my stomach, ignoring my feeding tube as it ripped into my body and bled, because ROTC was as close to serving my country as i would ever be able to come. i wanted it bad enough that i bled for it. i vomited through it. i passed out, i fell down, and i did serious damage to my body with one single PT session. that's how badly i wanted to be a part, to any degree, of my country's military. that's how much i wanted to serve the country i love.

and now all i do is dream about leaving it.

i love america but
america doesn't love me.

because my country doesn't love me back. it doesnt care about me at all.

it does not care that i suffer, that my needs arent being met, that i try harder than 99% of people every single day. i get up and i go to school and i work and i bust my ass all day, every day, when i could very easily and justifiably say "i'm too sick." and give it all up and just lay around all day doing nothing. i'd feel better if i gave up. id be entitled to more benefits and help if i gave up. my home health aid hours were cut to only 6 hours a week. because i am "too independent" to need the 9 they originally approved for me.

if the money used to fight the "War on drugs" were funneled into medicare instead, every disabled, sick, and elderly person would be able to have access to the treatments, supplies, doctors, procedures, and equipment they need to live the fullest version of their life. but instead, that money is used to lock up people for smoking a joint or eating mushrooms. and probably soon for ordering kratom--which has its largest user base among people suffering from chronic pain, people with anxiety, and people who are using it to relieve the symptoms of withdrawal as they get themselves off opiates without the help of a methadone clinic.

but who cares about the legitimate medical needs that drive kratom or marijuana users? there are people getting high.

---

my 50lb wheelchair. which is also ill-fitting, but
a custom fitted one costs more than my life is worth.

i go to school, and on a bad day--which are getting more and more common as my conditions progress--i slide around the side of my car to my trunk. i sit on the bumper because my legs are too weak to hold me up while lifting a 50lb wheelchair out of the car. i use the wheels as much as possible to roll my chair down the back of my car. by the time i get the chair out, attach the legs, get myself situated, and then roll myself across the street, up a ramp thats too steep and not flat, that i've fallen out of my wheelchair while trying to use twice in the past month, and get to my classroom---by the time all that is done, i am drenched in sweat, my heart rate is dangerously high, and every inch of my upper body throbs and aches with muscles that are just too weak to do that kind of manual labor.

and i do it all the time. because it's what i have to do, to get my education. i have no one here to drive me around. i have to do it all myself--or i have to stop doing anything. i have had over a decade of illness, of misery, of hospitalizations and infections and a wide range of humiliating symptoms and accidents, along with a million other things healthy people don't want to know about.

and there are exactly two things that help: marijuana and kratom. i have to do battle with every refill of marinol, the synthetic THC pill i take that lets me ingest things using my mouth. without it, i can't even run my tube feeds. without it, i was about to get put on TPN (IV nutrition) because i am so broken that i can't even manage to meet my bodys most basic needs on my own.

a few decades ago, i would already be dead.

but, you know. that's not important. because there are people getting high.

---

the so-called "war on drugs" isn't a war on drugs: it's a war on people. people like me. we are the only casualties in this war.

people who want to get high will find a way to get high. people who use drugs recreationally will not stop doing it just because those drugs are illegal. outlawing weed, cocaine, heroin, ecstasy, whatever, has not stopped people from using them. what it has done is stop people who are uncomfortable breaking the law, would not do well in jail, or bound by a pain management contract to only take
what that dr gives them even if it doesnt work or has awful side effects. it has stopped people who are too ill to go into the world and make friends with someone who has access to weed or pills or whatever makes them feel better.

hard to get. not impossible.

i hear the party line response:

"making these substances illegal makes it harder for people to get them and keeps them out of the hands of kids."

and obviously that works, which is why prohibition is still in effect and there's a huge market for moonshine runs and speakeasies. obviously that works, which is why we have seen illegal drug use decline. obviously that works, because countries that have decriminalized drugs like portugal have seen a rise in use and drug related crime.

except, oh wait. they havent:

14 Years After Decriminalizing All Drugs, Here's What Portugal Looks Like
 http://mic.com/articles/110344/14-years-after-portugal-decriminalized-all-drugs-here-s-what-s-happening )

this approach is exactly as successful as abstinence only sex ed--which is to say not even a little bit.

portugal's stats:

but who cares about science and fact? there are people getting high.

---

im sick of being treated like a criminal for being ill.

im sick of this country and the absolutely ridiculous laws governing every aspect of the lives of the sick, disabled, elderly, indigent, and indigenous.

im sick of the COMPLETE HYPOCRISY of people trying to outlaw and control and deny people of drugs that help because "Drugs are bad!", while allowing alcohol companies to advertise on TV. im garbage for wanting relief from my chronic pain or wanting to be able to eat without having it be through the tube in my gut, but alcohol use is just fine.

i ate through my nose for a year
before they made the tube a
permanent one in my gut.

 im sick of doctors that dont listen or care, and a government that would rather i just go die and stop costing them money.

im sick of being denied things that help me live an actual life, instead of being trapped in bed all the time, because someone has decided that my life is not worth a specific amount of money.

im sick of the overreaching by the FDA and the DEA, to make sure everyone is on a bunch of shitty prescription drugs that have more side effects than benefits while denying us the option of using natural herbs like marijuana and kratom and poppy seeds.

im sick of the criminalization of drugs that have literally been used since the neanderthals were at the top of the food chain.

im sick of facing problems every single month in getting my LEGALLY PRESCRIBED PAINKILLERS because the insurance or the pharmacist or the governor feels that i am suspect because im not 90.

im sick of insurance companies making decisions instead of doctors.

im sick of being sick and everyone in a position to help me feel better doing everything they can to keep me sick.

im sick of having pills shoved down my throat that dont work because it's all there is.

im sick and nobody gives a damn.

because there are people getting high.

---

they'd rather pay for hospital visits
and hope i get MRSA.

i had a conversation a few years ago. it was with a friend who was on IV nutrition and hadn't eaten a single bite of food in over 5 years. while she was inpatient yet again, they gave her marinol, the miracle synthetic THC pill that i take every day. i spoke to her while the side effects of it made her sleepy and surprisingly helped ease the spasms that were taking over her legs as well. i spoke to her after she'd just eaten a container of jello--the first food to pass her lips in half a decade.

friend: it's too bad this is all temporary.
me: they won't write you a prescription for marinol once you leave the hospital??
friend: they will. they did. medicare denied it, though. too expensive and they don't think i need it.
me: too expensive? its $500 a month. isn't TPN more?
friend: my TPN is about $1,000 a day.
me: ..so isn't it cheaper for them to pay 500 a month rather than 1000 a day?
friend: in the short term. but in the long run, they'd rather pay for the TPN. if i'm on TPN, ill die a lot sooner and dead people don't cost anything.

dead people don't cost anything.

i hope everyone who just read this post thinks of those words every single day. dead people don't cost anything. because that is the bottom line. that is what it all comes down to. if people have options for treatment, if people can keep their illnesses at bay enough to keep being alive, they are going to cost money for longer than they would if they had no options.

and here's the rub: even if someone sick or disabled CAN work, sometimes they don't. because the jobs they are qualified for or capable of doing, are ones that don't have the kind of health insurance coverage that someone with serious chronic conditions needs. medicare and medicaid are incredibly limited, but they do cover ER visits. they do cover some medications and specialists. if you know how to do the medicaid tapdance, they may even cover a wheelchair or a feeding tube. good luck finding that kind of coverage in a job at walmart or mcdonalds.

i have to eat this way because
there are people getting high.

people who are alive and too sick to work cost money. (never mind that our families paid into the system for generations with the specific hope that should they or their loved ones fall ill some day, they would be taken care of.)

elderly people who aren't working anymore cost money (never mind that they earned it.)

disabled people who can't work or who can only work part-time or menial jobs that don't pay a living wage, cost money.

anyone with medicare or medicaid, many of whom are children, costs money.

people are getting high and dead people don't cost anything. it's a win/win situation for the insurance and pharmaceutical industries, not to mention politicians who know they can woo uneducated masses into supporting any anti-drug cause without thinking about it too much.

and of course, the self-righteous uneducated masses like brick resident hannah hall, who is interested in purchasing that bridge in brooklyn using someone else's credit card if you're willing to sell it to her.

Krazy for Kratom Diary, part 1

Mitragyna speciosa (ketum, kratom or kratum] Thai: กระท่อม) is a tropical deciduous and evergreen tree in the coffee family (Rubiaceae) native to Southeast Asia in the Indochina and Malesia floristic regions. Its leaves are used for medicinal properties. It is psychoactive, and leaves are chewed to uplift mood and to treat health problems. M. speciosa is indigenous to Thailand and, despite growing naturally in the country, has been outlawed for 70 years and was originally banned because it was reducing the Thai government's tax revenue from opium distribution.

Kratom behaves as a mu-opioid receptor agonist like morphine and is used in the management of chronic pain, as well as recreationally. Kratom use is not detected by typical drug screening tests, but its metabolites can be detected by more specialized testing. The pharmacological effects of kratom on humans, including its efficacy and safety, are not well-studied. - Wikipedia

Kratom Resources:

Kratom on Erowid

The Kratom User's Guide

/r/Kratom on Reddit

I am taking red vein/white vein mix from www.microfinekratom.com

o6oo PM - just took my very first kratom capsule. i’m nervous but excited. as i obviously have nothing of substance to report yet, i figured for my opener i would talk about my goals and why i am willing to experiment with something like this.

• PROs:

- kratom is chemical-free. i am far from a homeopath or organic nut, and i love gluten more than i love my family, but i am also a scientist. and as a scientist, i am permanently horrified by the fillers, dyes, and general “icky stuff” that gets put into my body every day. i am happy to have the medications that i do, to have access to them and that they exist because they do all kinds of wonderful stuff for me like controlling my blood pressure and helping stop the ongoing cycle of vomiting that is my life. but they are still chemicals, and i still put a LOT of them into my body on a regular basis, and there are still a lot of ingredients in them that aren’t helping me, but are part of the compound of the medication itself.
- kratom does not need a prescription. this will let me take control over my own healthcare to some degree. i can decide when i need to take it and how much i need to take based on how i am feeling rather than a doctor’s personal interpretation of my conditions and their own multiple and varied concerns when it comes to scheduled drugs.

• CONs:

• - my insurance will not pay for it, and kratom costs about as much as many prescription medications. as someone on a fixed income who can barely make ends meet already, this is a big con.
• - kratom is relatively unresearched. there are any number of potentially serious side effects to using it, and i have no way of knowing whether those might happen tonight, or tomorrow or next week or after ten years of use.
• - kratom does not need a prescription. i am putting all of my faith in the supplier, that not only were they sanitary and careful about filling these capsules and farming and preparing the kratom, but also that it is indeed kratom that they are giving me. the company i used has a lot of positive reviews, but anything is possible.
• - kratom is not likely to be widely available for much longer. when we look around and see what happens to non-prescription drugs that gain a bad rap from people who used them irresponsibly and people who are afraid of the word drugs (marijuana is the best example of this, but i urge you to look at the state of ‘illegal’ drugs in portugal since the revolution and see what a positive effect decriminalizing has had!), we can assume that kratom will soon be on a blacklist somewhere.
• - it may not work.

and yes, you may have noticed the CONs list is longer than the PROs list, but these are definitely weighted lists. and the potential for pain relief and taking control of my life and my health far outweigh any of the cons. unless of course, i have some kind of crazy reaction to it and become a zombie and/or drop dead. those things would suck. although if i had to choose, i’d rather be a zombie. as long as i’m a quick, scary, awesome zombie like in 28 days and not some rotted corpse dragging my butt around like in the “thriller” video.

i hope you guys enjoyed my first kratom post, and i thank you all for taking this journey with me. this was pretty long, so it will be a separate entry, while the rest of my “kratom” diary (for my maiden voyage, anyway) will be compiled into one entry, to be followed up by long-term-use updates, hopefully.

PLUR it up & stay frosty guys.

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.

"there is no mountain i’ve found here that i can move.."

when it rains, it pours. i am barely holding my life together with both hands. my SSI income is just barely enough to cover my rent with enough left over for a coffee or two if im lucky. and today i received a letter from my landlord stating that there will be a 4% increase in my rent. because clearly i'm not already paying far more per month than this tiny, cramped apartment with a multitude of shady neighbors moving in, no handicapped parking, and a flight of steps that seems to get longer every time i have to climb it.

i haven't gotten my tuition refund yet so i went to student accounting on tuesday to ask why. they screwed up and something was checked off as full time even though i'm half time JUST LIKE LAST SEMESTER, and even though my tuition bill and financial aid letter were completely in line with half-time. i was expecting this money *last week*. i said, how long until its disbursed to my bank account? she goes, 3-4 days. i'm like.. my bills are already overdue.. i've got a shutoff notice on my electric cause i'm a month behind.. her response? "start calling family." i just looked at her for a minute and then said "i don't have any." because that's much simpler than explaining that my family is poor too. that i'm not like these 18 year old kids who can just pick up a phone and have a wire transfer in ten minutes. do you not think that i thought of asking my family already? i've cost my grandmother enough money because of my shitty health.. and even she doesn't understand exactly how much all the OTC things i need cost. there's all sorts of things that i need or have needed that insurance won't cover. she wanted to know why i had to buy my walker out of pocket. well, i have no reflexive response in my left leg and both legs frequently buckle while walking. but we don't know why yet. of course everyone suspects mitochondrial disease, but it's not an official diagnosis. and nothing else that i'm diagnosed with at this point is justification in medicare's eyes for a walker. i take benedryl very often to help with my allergies and nausea. it works fantastic and it's much more gentle than any prescription allergy med i could take.. but it means i have to buy it myself. tegaderms for my pain patches. adult diapers. organizational shelving baskets and drawers to organize the insane amount of medical supplies i have as well as keeping dangerous things out of reach of my very curious cats.

how nice it must be, for people who can just ring up mommy or daddy every time they need money. when i ring up my grandmother for something it means *she has to go without* so i simply don't do it unless its a serious necessity. my grandmother has spent her entire life sacrificing for this family and i am shouldering a tremendous weight every single day of my life over how much i'm costing her financially, and how much i am costing my entire family
(not to mention everyone else in my life as well) emotionally and mentally. before i got so sick i had a handle on things for the most part. after i managed to beat back all the false diagnoses (including bipolar disorder, schizophrenia, and dissociative identity disorder) and get off the 17 psych meds i was on, and i was finally a functioning human being. six years of my life are *blank*--i simply dont remember them thanks to all the medications i was on simply because nobody considered the idea that i might be autistic until well into adulthood. i was officially diagnosed with asperger syndrome about two years ago and the only psychiatric medication i take is something for anxiety now. i've made huge strides and i turned my life around. i worked hard to get myself on a positive trajectory, to become a person who accomplished things. a person who mattered.

and now everything is broken. it's all falling apart. i can't survive on my own, and all i am doing is causing the people i love pain and suffering. i cannot think of a single person who wouldn't be at least slightly better off if i ceased to exist. all i do is cost money and cause worry. i'm a walking breathing human shaped burden and i hate myself for it.

my grandmother. my mother. my sister. my brother. my aunts and uncles. my cousins. my friends. i *cost* everyone in my life in one way or another. i don't understand how something so worthless can cost so very much. but everyone would be better off if i got hit by a truck tomorrow. people would grieve and then move on with their lives just like everyone does when someone dies. world keeps spinning, life goes on. i wish i had it in me to remove myself from the equation, but i dont. so ill just keep on going and infecting everyone around me like the plague, and sitting here uselessly while they suffer.