Thursday, November 28, 2013


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.

Saturday, November 23, 2013

Review: The Hunger Games: Catching Fire

hunger games catching fire---MAJOR SPOILER FREE, minor spoilers after the warning

parking was a nightmare, even with a handicapped tag. as i arrived a teenage girl bounded out in front of my car and i almost hit her as her friend yelled at her to stop acting like an idiot and get out of the road. she looked sheepish and was wearing a hunger games tshirt so i flashed her the three-fingers and she smiled and ran off. us nerds gotta stick together, girlfriend. and thats the new universal geek gesture that means "we cool."

in the theater during snows "uh.. whats happening" the entire theater started applauding, lol. and then again at the end when the mockingjay logo popped up.

and then on the way out some elderly people were walking ahead of me and this guy says, "are you okay walking?" and the woman says back "yeah, i can make it." and he goes "i can carry you on my back til the fog comes." im not sure what movie they saw of course but i have a hunch. lol

okay onto the review.

im sure some of these will change with future re-watchings, but here's my (and bonus: j's!) basic first reactions to catching fire. no major spoilers for those who haven't read the books, but if you want to go into the movie totally not knowing anything, dont read any further.
[semi spoiler alert]

my first-run reactions:
- the popcorn sucked.
- too much time in the district, wayyy too much time in the capitol, not enough in the arena. (i felt this way about the first movie too.)
- too much exposition. bo-ring. and a waste of woody harrelson.
- granddaughter wtf? unneccessary scenes in an already epically long movie
- finnick could have been hotter
- mags could have been older she was basically 156 in the books come on now.
- johanna was not at all how i pictured her and i didnt like her at first but she's growing on me (and i like jena malone so its odd that i didnt like johanna but then shes supposed to be pretty unlikeable so.. win?)
- beetee was way off base from the picture in my head too
- willow shields is awesome and needs more scenes
- jlaw is perfection embodied as always
- really why would you leave out plutarchs watch. thats kind of a big point to miss. js.
- the arena was perfect. a cinematic masterpiece.
- katniss' mom needs to learn how to have an emotion or two. i mean, she sent her child off into the hunger games twice without making a facial expression. im starting to wonder about her.
- "oh mahogany!" i died
- sugar cube scene felt awkward rather than UST-y mostly because finnick could have been hotter
- "all the girls at school wear their hair like this" thx for the shoutout to us fangirls
my rating: 8/10

overall right now, in the throes of severe sensory overload and extremely sleepy and medicated, i give it an 8/10. jennifer was absolute perfection. her emotions, her facial expressions. when snow was talking to her, you could SEE her swallowing hard, she's really just a master of emotions. im really looking forward to the rest of her career cause the girl has got game.

j's first-run reactions: (bearing in mind that she is not a geek and has not read the books and mostly went for me. these are straight from her.)
- the woman next to me had the worst BO on the planet.
- this is the first movie with different hideous outfits.
- katniss is a manipulative whore. shit or get off the pot and pick one of them already, and stop toying with their feelings. (me: STOP LOOKING AT THE LOVE STORY YOU CAPITOL SLAVE. her: there's popcorn on your shirt.)
- finnick could have been hotter.
- "what the fuck happened at the end?"
her rating: "you're a geek."

Thursday, November 21, 2013

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.

Monday, November 18, 2013

"God Won't Give You More Than You Can Handle!"

i hate when people say things like this.

and the reason actually has nothing to do with the fact that im an atheist at all--as most would assume. but honestly, when people tell me they are praying for me, etc that does not bother me at all, quite the opposite. to me, i take that as "you're in my heart" and who could have a problem with that? someone taking time out of their day to think about you? that's huge. that touches me, regardless of my beliefs or anyone elses, it means someone cares.

but sayings like this, and other platitudes like "oh, itll get better." "its always darkest before the dawn." "youll get through it." sound encouraging but are much more insidious if you really sit and think about it. because what they translate into when other people say them to you is "you're fine, stop complaining." it translates to "i really dont want to hear about all this, so here's a bumper sticker to make you feel better." it avoids the actual conversations we need to have with the people in our lives. its a way for people to feel like they "helped" by being "inspirational" without actually having to help us in the way we need---by having someone *listen* and *care* and *be involved*.

these little phrases that get tossed around so often and so easily "you are so strong/brave/inspirational!" they are designed to allow people to distance themselves from the topic. they dont even have to think of their own words to do it, they can just pick a few photos of beaches with handwriting fonts on them to share and call it a day.

its a lot like "awareness", we all know how much people love to raise awareness for things we're already aware of. it's an exercise in self-congratulation--you get to feel like you did something without actually doing something. (see this brief article for more on that process: )

people need to really realize how hurtful sayings like this are despite the fact that these sayings are totally meaningless and do nothing to help anyone. and in many cases, the only thing it does accomplish is making the person struggling feel like they are failing because they aren't strong enough or brave enough. they're not trusting god enough. they're not doing enough.

we are constantly faced with people--friends, family, doctors, strangers on the internet--telling us how not enough we are. and it adds up. and it doesnt have to be said in those words. sometimes words aren't necessary. every time someone loses a central line to sepsis, every time a tube gets screwed up. every time a surgery doesnt go quite as planned or a new med doesnt work. every time i reach the breaking point and shut my feeding pump off. failure. my stomach fails at being a stomach. my muscles fail at being muscles. my intestines fail at being intestines. my body fails at being a body. and i fail at slapping a smile on my face and pretending that everythings OK so people dont get "sad".

a few days ago, my own flesh and blood half-sister took a large piece out of me, and decided it was her job to tell me how my FB posts are "overwhelmingly negative" and even suggested some "coping techniques" i could use to get out of that "negative thought pattern" including singing a favorite song in my head.

well by golly gee willakers. you mean if i just start singing sara bareilles songs in my head, i wont be sick anymore?? IF ONLY I HAD KNOWN. the fact that she even interprets the posts that i make, which, if they are related to my health at all (and you guys on my f-list know thats far from the only thing i post about), aren't NEGATIVE, they're simply HONEST. and while apparently she doesn't give a sh*t about me, there are people that do. FB is my main method of communication with pretty much everyone in my life except my girlfriend and my grandmother. i put out UPDATES on my condition because i assume if someone is on my friends list, they give a damn. (i am sometimes very wrong about that.)

anyway, these coffee mug platitudes drive me absolutely batty. its just a way to SOUND like you care without having to make the effort to actually care. it costs them nothing. and it often costs us a lot. because its not like most of us don't already have serious body dysmophia type issues or self esteem issues, its not like every time one of us fails a feeding trial or gets an infection or has to think about adding a new piece of hardware to our cyborg bodies we feel like we're failing at the most basic human level: we cannot even feed ourselves. after breathing, eating is the most important bodily function humans need. and as i have sat here over the last two years watching friends go from eating orally to tube feeds to TPN. as i have sat here watching friends struggle with one of those other basic human actions of expelling waste and become dependent on pills and supplements to go at all, and even further watching them end up with ostomies. as i have sat here and watched all of this, i have also watched people that claimed to be their friends turning away from them, dismissing their pain, and making them feel small and unworthy.

when you are trapped inside a body that cannot feed itself, that cannot expel waste on its own, that cannot breathe properly on its own, it is really hard not to feel like a failure. because biologically, we are. (i actually said this to a friend recently---that ive accepted that i am just a lemon. im a cosmic mistake, everything is breaking down and i lost the receipt so i can't go trade this body in for one that knows how to be a body.)

i wish people would more often sit down and think about what they're saying and what it REALLY means. and what it could mean to someone who is struggling, to blow off their problems with a simple "theres a light at the end of the tunnel". sure theres a light at the end of the tunnel, but for a lot of us that light is the headlight of the train that is bearing down on us too fast to stop. and the platitudes do nothing to help that.

we're tied to the train tracks with this train bearing down on us, and the people brushing us off with empty platitudes are basically standing next to us as we're tied down, bending over, and whispering "there's a train coming, just so you know. you should probably get out of the way." and then leaving without bothering to untie us.&nbsp

they did their job, right? they let us know about the train.

the rest is on us to deal with.

Friday, November 1, 2013

DO's and DON'Ts for Able-Bodied People

If you are able-bodied and you come across a disabled person (particularly in public), here's a handy list of how (and how NOT) to act. Each one of these is something that I personally or friends of mine have experienced from total strangers.

1. DO NOT ask to "try out" or "play with" my assistive device and do not get angry or upset if you do ask and I say no. This includes walkers, wheelchairs, service dogs, braces, canes, crutches, glasses, and anything else that I may be using to help me. They are not toys, they are expensive to replace, and it's incredibly rude and demeaning. I actually need this to function.

2. DO NOT pet, approach, or talk to my service dog. He is working. If you distract him from doing his job, I could get seriously injured.

3. DO NOT ask what my assistive device or service animal does for me. It's incredibly rude and none of your business.

4. DO NOT ask me "what's wrong with you?" It's incredibly rude and none of your business, and the answer is always going to be, "There's nothing wrong with me. What's wrong with YOU?"

5. DO NOT walk through an automatic handicapped door when I have just pressed the button to open it. It only stays open for just so long, and I need to get myself and my assistive device through it before it closes. You can either wait until I go through or use a non-automatic door to enter/exit the building.

6. DO NOT walk right on top of me. This applies ALL the time, but especially on ramps. Going up a ramp with an assistive device can be difficult and takes more effort than going down it unless I am in a motorized wheelchair. Going down the ramp, I have to hold the brakes on my walker or grip the wheels of my manual wheelchair tightly to make sure I don't go flying down and injure myself. If you are walking right behind me and forcing me to go faster than is comfortable and safe for me, it not only makes me nervous but could lead to me getting hurt. Use the steps or wait until I have cleared the ramp to use it. I NEED the ramp; you do not.

7. DO NOT push past me to get in an elevator. The elevator is not going to leave without you if you allow me to get on it before you. However, there is a good chance that if I am prevented from getting on the elevator until the last minute, that the doors will close on me and/or my assistive device and can, again, cause me to get injured or even break my assistive device or hurt my service dog.

8. DO NOT stare at me. I am not a sideshow attraction and I am positive this is not the first time you have seen someone using an assistive device or with a service dog. Either way I am not here to entertain you. I'm sure you don't like to be stared at, so don't do it to other people.

9. DO hold the door! You should do this with able-bodied people as well; it's just the polite thing to do.

10. DO offer to help if you see me struggling to get my assistive device into a car or through a doorway.

11. DO NOT get angry if your help is (politely) refused. It's appreciated that you offered, but I may not need your help.

12. DO treat me with respect. I am a human being and I have feelings.

13. DO NOT tell me what you think will cure/help/"fix" me. If it's a legitimate treatment for an ailment of mine I have probably already tried it. My doctor knows how to help me better than you do.

14. DO NOT tell me stories about your aunt/third cousin/penpal who had "something similar" and just "pushed through it" without whatever assistive device I am using. They probably didn't REALLY have what I do and even if they did it doesn't mean they were in the same condition medically that I am. What you are really saying is, "I just don't think you're trying hard enough. You must like being disabled."

15. DO NOT be insulted if I don't wish to discuss my medical history with you. It's incredibly rude and none of your business. I have things to do and am not required to take time out of my day to discuss my personal issues with you.

That's my list! What dos or don'ts would YOU add to this list?