It's All Uncharted

My Stolen Colon: 1 Year Later

noreply@blogger.com (Anonymous) — Fri, 23 Dec 2016 04:31:00 +0000

one year ago today, I was rushed into the ER by ambulance and had the first of two major emergency surgeries that left me with a colostomy that I absolutely hate. they said that I'd been walking around with a perforated bowel for about a week at that point, and I was in septic shock by the time I called for help, and that if I'd waited two more hours I would have died.

after the surgeries I was in a coma, on a ventilator, for almost two weeks. when I woke up, I couldn't even sit up on my own. I had to relearn how to use my legs and arms, and I had to figure out how to cope with increasingly strange coma dreams and serious PTSD—as well as the fact that I regretted calling 911 because I woke up with a colostomy bag. I was unable to consent to its placement, and immediately discovered that I would have rather died than paid this particular cost for staying alive. people told me I'd adapt and learn to accept it.

today, one year later, I do not feel any differently about any of it. but because there are people I love who mean a whole lot to me, I am still here and still fighting for them. on several occasions over the past year, I opened myself up to questions about this experience, life with a colostomy, and why I am a staunch advocate of the right-to-die movement.

these are the questions my friends had for me, as well as my answers. I have rearranged some of the questions in hopes of making this post more cohesive, but remember they were answered at varied times over the past year (broken up to make it less overwhelming for me) and so some of them may be weird in tense or in reference to other questions due to my rearranging.

this is also a very long post, so mad props if you actually stick with it til the end.

Q: What happened before your crisis that triggered it? Do you remember what happened during/after your crisis before the ostomy?

A: for about two years I was getting very badly backed up. my gi at the time put me on polyethylene glycol (prescription miralax) and his answer was always "just keep taking it". it would be 4-6 weeks between bowel movements for me and that was normal. when these obstructions would pass, it would be very painful and I always suffered from anal fissures, chronic internal and external hemorrhoids, and often had to throw on a pair of gloves and manually remove impacted stool—all of which was very painful. size and consistency wise, it would be like giving birth out my rear end. on December 18^th 2015, I went to my GI doc and said "I haven’t gone to the bathroom in two months." he sent me home with orders for some routine bloodwork and a radiology order.

four days later, on December 22, I was laying on the floor of my apartment, sobbing in pain and feeling like I was literally going to die. I called 911, and the last thing I remember is my next-door neighbor, who was an EMT, coming and getting me onto the stretcher when the ambulance showed up. he wasn’t working, but the EMT whod shown up wanted me to walk to the other end of the building because she was allergic to cats (cant make this stuff up.) so he got annoyed and pulled the stretcher up to my door and somehow got me on my feet to take three steps to it. by the time I hit the stretcher, he said I was screaming incoherently. the next thing I remember was waking up in the hospital on January 2^nd.

Q: When you woke up after the ostomy was created, how did they tell you about the ostomy & what were your first thoughts/reactions to it?

A: I was vaguely aware that I had had a bowel perforation. I spent from December 22 to January 2^nd in a coma on a ventilator and nearly wound up with a trach as well. during that time I had some insane, septic shock induced dreams about what was going on around me, and some of it was real life peeking through, some of it was straight up science fiction. I don’t remember how I was told about it, just some vague half-dream/half-reality stuff about people changing something that had poop in it, but I didn’t really know what it was for awhile after I woke up from the coma. I refused to look at it when they did things with it, and I cried a lot. I insisted they undo it, I cussed out the surgeon, and I was awful to my girlfriend. mostly I was just angry that I had lived, because this was a cost I was not willing to pay—and I am still not. if I could rewind time, in all honesty, I would not have called 911. not with this as the outcome.

Q: What is it like having & caring for it?

A: in a word? awful. its disgusting, it's high maintenance. it's badly placed (right between my belly pudge rolls) and retracted. it leaks a lot, it's always uncomfortable, it takes a lot of time to change appliances and keep clean, and the whole thing sets off my gag reflex. I have a tower of plastic drawers to organize the supplies I have to keep around, and no matter where I go I have to drag 4000 pounds of stuff with me in case of change, leak, etc. its rotten and I hate every minute of it, and I literally cannot wait until this is all past tense.

It hasn't improved my bowel function at all and in fact has made it painful on a daily basis, and it seems theres ALWAYS something going on with it—either im backed up, or I have the runs, or theres some blood, or whatever. ive been to the ER more in the past year than the rest of my life combined, and one of those visits wound up with me being treated for c. diff, which was caused by the ostomy. I honestly don't have anything nice to say about it, unfortunately. I do know its not usually this bad for most people, though. I don't want anyone thinking im an authority on this or that my experience is the norm, because it's definitely not. but I think this is something that sucks no matter what the circumstances are, anyway.

Q: I know you have been trying to get it reversed... Have you made progress toward that happening or is it not possible?

A: it should be possible to get it reversed. it's hard to know because of scar tissue and how much of my colon was removed, how successful a reversal would be. right now my nutrition is in such a bad place that no surgeon would do this operation—no surgeon I'd want, anyway. there's been a consensus among the I think six different surgeons ive seen (including the original surgeon who did the emergency surgery on me) that im not stable enough for what they consider an "elective" surgery. im hoping that getting on TPN will improve my nutrition to the point where I can have the surgery done, so I don’t have to live with this thing anymore. the original surgeon said flat out he wont do the reversal under any circumstances, as he feels im too complex a patient and I need someone with a better understanding of my conditions and complications. (too bad for me he didn't say that the first time around, I guess. *eyeroll*)

Q: I've read a fair bit on gastroparesis because of you and links you post, but I'm not sure how exactly the condition evolved from start to "emergency where the doctors decided an osotomy was the only option".

A: so, gastroparesis is dysmotility of the stomach, basically for whatever reason (its generally thought that damage to the vagus nerve causes GP, which can be damaged by diabetes [diabetic gastroparesis is a thing, just kinda different from "idiopathic" in some ways] or surgery or accident or, as suspected in my case, mitochondrial disease, etc. i also have intestinal dysmotility/colonic inertia, which is basically the same thing as gastroparesis but in my intestines. it's not strictly because of the GP--theres people with GP whose intestines are fine and people whose intestines are a problem but dont have GP. from what ive seen, its more common to see a total gut breakdown in mito patients than in a typical GP patient. so the slowed stomach and slowed intestines are actually two different issues.

because my intestines are so slow, i was getting very badly backed up for almost two years, to the point where it would be 4-6 weeks between bowel movements, and then i finally went, there was a lot of blood and bad fissures and it would be so large and hard and painful that more than once i laid on my bathroom floor just sobbing and begging the universe to let me die. in december, the large, hard, stool, was just too much and it caused my colon to tear. they did surgery to remove the part of my bowel that had been perforated, and i actually perforated a second time while they were doing the surgery, and so the colostomy was done to "allow my bowel to rest".

though when j asked my surgeon whether id be able to have it reversed, his response was to look at her like she was nuts and ask, "why would she want to do that?" because there's a decent chance that with a reversal, ill go right back to obstructing and potentially perforate again, lose more of my bowel, probably end up with another colostomy or ileostomy that may not be able to be reversed, and obviously might not survive another bout of peritonitis/sepsis. but there's also a decent chance that could all happen anyway, as i still have plenty of intestine left that's still slow, and so the colostomy really makes no difference in my case. my metaphor of choice is "it doesn't matter where you put the faucet if the whole pipe's busted."

Q: From the perspective of someone wanting help and finding your blog, I think the day to day living with it, particularly in conjunction with a feeding tube, would help others. Like, do they interfere with each other? How tricky is it to move/drive/go out places managing both?

A: really the only connection between them that i've seen so far is that when i push meds/water through my j tube, i get pretty severe cramping for awhile, which is something that happened when i first got a j tube, but stopped after 6 months or so. i havent been tolerating my tube feeds for a year and a half now, but that got even more severe after the ostomy surgery. i used to not bother running formula because i could only hit 10, 15ml per hour, which was basically about 100 calories a day or so, and it made me nauseous. now even at 5mls/hour the gut cramping and pain is so severe that i cant tolerate it at all.

comfort wise, it's a bitch. my tube and the ostomy are on my left side, and i can't really lay on my right side or on my stomach without a lot of discomfort, which is unfortunate because laying on my right side has been how i usually sleep and snuggle up to my girlfriend, and is also the position thats most comfortable for my back. so that sucks.

the major issue with having both these things is actually how much stuff i have to bring out with me when i leave the house.

in addition to the usual bringing medication, water, pill crusher, syringe, gauze, tape, and tube extension (if im not plugged into one--sometimes i leave myself hooked up if i know for sure im gonna have to medicate while out so i don't have to mess around under my shirt in public, but sometimes its unexpected and so i always make sure i have an extension with me cause i can't access my tube without one as i have a low profile button.), now i also have to have supplies not just to change the bag itself, but also in case of leaking or what i called having an "explostomy" (a term my surgeon truly enjoyed). theres a LOT that goes into the ostomy:

- the backing or wafer, because i use a two-piece appliance with a disposable bag
- the bag itself which snaps onto the wafer
- eakin seals, which are little moldable circles that create an extra barrier between the skin and the wafer
- barrier seals, which are little "c" shaped things that go around the edge of the wafer to help prevent leaks & keep the wafer stuck to you
- cavilon barrier wipes, which you wipe on your skin and it adheres to it and creates a kind of thin "skin" that your adhesives will stick to without damaging your skin
- stoma powder, which.. does something, i dont even know, but i think it helps with irritation or whatever
- lubricating deoderant, which helps prevent waste from getting stuck on the bag and helps temper down the horrendously foul smell
- special cleaning wipes that dont have aloe or anything else that might coat the skin & keep the appliance from sticking
- stoma paste, which is exactly what it sounds like and comes in handy if you have pudge rolls that inhibit the wafer and stuff from sticking properly--ostomies in chubby people are a nightmare in and of themselves just due to placement issues.
- gloves because obviously
- scissors for cutting the backing
- mini trash bags that come with the appliance bags so you can tie them up before pitching them into a public or someone else's trash can
- a mirror to see wtf youre doing
- adhesive remover wipes to get rid of old adhesive stuff
- saline syringes that i use sometimes to clean the stoma itself..

in addition to all that i always carry a change of clothes in case of leaking, plus barf bags, calmoseptine for irritation, chuck pads in case i have to change in an unclean area or in someone else's place to keep the yuck contained.. i generally just keep the bag packed so i can grab it anytime im headed out without worrying about if i forgot this thing or that thing. me and j call it my "go bag".

the short answer is, i have a backpack that just goes everywhere with me now and is completely full of all this stuff for "just in case". i dont carry around all the packages, but i do have enough stuff for at least two full bag changes--the backing, everything--as well as 3 extra bags in case i have a big output day and have to empty. the backpack is heavy and annoying, and really its a huge pain in the ass to carry all this stuff, and im really looking forward to being able to go back to just having a purse with some tubie supplies in it. >_<

Q: How does being on the autism spectrum interact with coping with a colostomy? Again, I'm thinking of "If I were googling for help, what would be helpful out there" because that's something you can speak to that maybe will educate a parent/caregiver/even a doctor on things to consider when making this choice, especially if the patient is unable to consent during an emergency.

this is absolutely my favorite question, and actually is what prompted me to start thinking about this blog in the first place. the short answer is that its a sensory nightmare that often drives me to the point of sobbing, stimming, and generally hating life a lot. there's a couple of different issues so im gonna separate them into categories here.

- placement

o placement is a huge issue, particularly in an emergency situation. when an ostomy is planned, the surgeon will have the patient lay down, sit, stand, move around, and mark their abdomen as they do, to ensure a placement that will interfere with their mobility as little as possible. this is obviously difficult in someone who has belly pudge anyway, but in an emergent situation like mine, placement isn't even considered. theyre looking to get in and keep the person alive, and so it's all done as quickly as possible. in my case, the stoma was put right in the crease of my stomach, next to my navel, and so its incredibly difficult to get a good fit.

having intestinal dysmotility means that my stoma started retracting (pulling back inside me) only a few weeks after the surgery too. the result was my ostomy nurse telling me "99% of people who think their stoma is a problem just dont have the right appliance and fit. youre part of the 1% where the stoma actually is the problem, and there's not much i can do to help." so i have a lot of leaks, i have a lot of pinching when theres output from the stoma. im a little bit lucky in this way, because i have a very large scar going up and down my belly and all of the surrounding area has no feeling in it anymore. this is something i imagine would be even worse if i had feeling in that area, but i can only feel the left side of my abdomen, so its half the misery it could be.

- 2. the appliance itself

o obviously based on the list up above theres a whole hell of a lot of sticky things and bits and pieces that get stuck to ones skin, and its pretty awful, especially when the bag starts to have stuff in it. its heavy, its sticky, theres never a second that im not aware that its on me, and the slightest touch to it sends a shockwave of pain. everyone told me there's no nerve endings there, that it shoudnt/couldnt hurt, but it does, particularly when it starts spasming.

- 3. mistaken sensory identities

o this is the worst of it. when i have to go, it still feels like i have to go the normal way. its pretty painful and usually feels like im crapping razorblades, which is bad enough, but it feels like im crapping razorblades out my rear end and more than a few times ive actually gone and sat on the toilet even though its impossible for anything to come out that way. the pain aside, its *really* hard for me that this happens, i cant seem to reconcile in my brain that nothing is going to come out the bottom. while i was still in the hospital and for a couple months after every so often i would pass gas out the regular way, and the first time it happened it scared the daylights out of me cause i didnt know that was possible. but its been really hard for me to cope with the disconnect.

the doctors told me it was akin to phantom limb syndrome, and that's a pretty accurate summation of whats going on. its so distressing that the only sensory nightmare i can even compare it to would be the sort of overload one experiences when walking into walmart right before christmas. my brain doesnt understand whats happening, and it generally leads to, at best, a really bad panic attack, and at worst a total meltdown of sobbing, stimming, rocking, and self-harm. i would say its the worst sensory overload ive ever personally experienced, and it extra sucked that nobody told me that could happen until it happened and i lost my mind over it. THEN i got an explanation.

Q: What is your stance on death with dignity & making educated decisions to stop life prolonging treatments and only accepting comfort care until the end?

A: 100% in favor of it. bodily autonomy is the most important thing in the world to me, and I think we live in a culture that fears death that we are willing to go to extreme lengths to avoid death—ours or those of our loved ones. I think it should be on each individual person to say when enough is enough and to then be given whatever they need to be comfortable. I think our anti-death and pro-aggressive-medical-treatment culture needs to stop also being an anti-drug culture, too.

most people who want this but are not very imminently going to die, if you ask them what their biggest burden is, they will say pain. ive gotten a lot of "well if we give you this now, what will you take at 90" nonsense in my life, being so young. the fact is, if I have to live in unbearable pain every day, I will not make it to 90 anyway.

I think if we made more of an effort to make people comfortable and worried a little less about what they'll do 6 decades from now (assuming theyre going to live that long with serious medical issues anyway—I certainly don’t see that in my future) that there would actually be LESS people pushing for the right-to-die, because being made comfortable is a gamechanger in a lot of situations. I definitely feel less like im just waiting around for the sweet release of death when im not in total physical misery. so I think comfort care should be more widely available and not limited to end-of-life care.

Q: How do you reconcile your belief in RTD [Right-To-Die] with the ableism in the medical field that denies disabled people the option to live? (Downs syndrome child being denied a heart transplant, for instance, or even somewhat your case)? I don't mean this to sound as belligerent as it may sound, I just honestly struggle with it myself, as someone who believes in freedom of choice but is also involved in disability activism and worries there will be collateral damage.

A: another question I am really glad to get, because this is very controversial and relevant, particularly now. in my own ideology, I honestly don't see these two things being connected at all—beyond the general idea of the fight for bodily autonomy. and I liken my arguments here to the arguments of pro-choice/pro-life in abortions as well. using your example, a child with down's being denied a life-saving procedure of any kind is not okay. in this scenario, someone else is deciding the value of another person's life—which is precisely what the anti-RTD movement is doing as well.

using the same example, if a woman is pregnant with a fetus that has been determined to have serious medical issues of any sort (down's, osteogenesis imperfecta, physical mutations/abnormalities, whatever else they're able to test for while in utero), I believe that woman has the right to an abortion. I don't believe that falls under the scope of what I call "the disability genocide" because while pregnant, the mother's body gets first dibs at autonomy. whatever the reason for it, whether the mother cannot provide for or take care of a special needs child, if it's emotionally distressing, if the mother herself is unwell, etc etc etc. her life will always, in my eyes, take priority over the life of a fetus, especially during the time when the fetus is unable to survive outside the womb.

that said, I am wholeheartedly against the idea of killing or allowing someone to die based on the viewpoint of someone else. just like I am against the idea of someone being forced to live based on the viewpoint of someone else. my surgery was done under "implied consent", which is to say that if a patient is unable to consent to something (as someone in an emergent medical crisis would be), decisions must be made based on the belief of what that person would want if they COULD consent. the assumption made about me specifically was that I would rather live with a colostomy bag than die, that I would have consented to have it done, knowing it was life-saving, if I was able to consent. which is why it is so important for everyone to have an advance directive, no matter their age or health. because unexpected things happen, and that's the only avenue we have to state what our wishes are. would an AD have stopped the surgery on me? likely not. because an AD can be overridden if two doctors both agree that the wishes stated are not in the patient's best interest. I can't imagine many drs would look at a 31 year old girl and believe her best interest is to die, even if she says that's what she wants.

so the TL;DR answer here is: I have no trouble reconciling these concepts, because I feel it's a slippery slope argument—that allowing people to be empowered in decisions about what they're willing to put up with just to stay alive and set limits on this, will lead to *other* people deciding people should die without consulting that person about their own feelings on the issue. nobody should make decisions about anyone else's body unless the person is permanently unable to do so: as in someone who is brain dead and on life support, for instance. and in the perfect world where that's true, an AD/living will would be legally binding, regardless of what anyone else wants, thinks, or feels.

Q: If your ostomy were in a less cumbersome location, would your feelings towards living with it change?
Q: if your ostomy didn't give you so many problems and functioned more seamlessly, the way it's more intended to, would you feel differently about it?

A: I grouped these two together because it's more or less the same answer. the short answer is no, I don’t believe I would feel differently. prior to all this happening, I was aware of ostomies and had/have several friends with them. in most of these cases, it's something they chose, and something that improved/s their quality of life. and even so, it's their body and their decision; I've seen people with ostomies talk about feeding tubes and how they'd rather die than have one. me and my tube are cool with that—im willing to live with a tube, they're not. the same goes in the other direction; if theyre willing to live with a bag, more power to them, but I am not.

the only situation I can imagine where I might even *consider* being okay with the bag, would be if it improved my quality of life, lessened my pain, etc. it's done none of those things for me, because the rest of my intestine is still as slow as it ever was. in my case the bag was placed (as I think I said in an earlier answer, its been months between questions so) to allow for "bowel rest" after the perforation, not to lessen my regular obstructions and generally slowed down gut misery. see above, re: it doesn't matter where the faucet is if the whole pipe is broken. an ileostomy probably would improve my gut function, but I would never allow one to be placed after having lived with the bag for a year because of the following:

I find the stoma itself to be a serious PTSD trigger as a sexual assault survivor (and believe it or not, this is actually very common. I was relieved that I wasn’t a freak when I saw other people discussing this.)

I am honestly completely grossed out by every single aspect of this. feces get stuck coming out and I have to remove it manually, if its too soft it leaks, if its too hard, it hurts.

the smell makes me gag, changing the appliance sets off panic attacks and I generally cry at some point during or after the process.

I once sat covered in feces for two hours, sobbing "I don’t want to do it" over and over again, and my neighbor (the EMT who got me on the ambulance that day) heard me and came over because he heard me sobbing and thought I was hurt and/or dying again. ive literally vomited during bag changes. I just can't handle it, sadly, and I don't think there's much of anything that would change that, short of having someone else to take care of it for me at all times, which is an impossible request. :/

all of that said, I think that in the case where its going to improve your quality of life, ease symptoms, etc, and you are consenting to it and have a good support system and good aftercare, then it could be something that would work for you. I do wish there was a way to experience this stuff before it was made "permanent" so to speak. I knew I didn’t want an ostomy, but I had no idea how badly I didn't want one until I had one. my fight to get it reversed has been the worst part—it was meant to be 6 months, its been a year and reversal is stil not even on the horizon for me because of my nutritional status being so poor right now.

people told me I would get used to it, and I suppose I have in the sense of.. I take care of it, but I do the bare minimum just to keep myself comfortable. if it leaks and burns my skin, I don’t care about it until it starts being uncomfortable for me or leaking outside the barrier. but I will otherwise ignore it because I can't bring myself to care if it gets infected. overall, my hatred for this thing has sucked every drop of my will to survive, so even though I think I answered the questions on this one, I will be the first to say im an unreliable narrator. im not suicidal, but I haven't personally cared if I live or die for a year now. im attempting to care for myself for the people I love—not because I personally want so badly to be alive, if that makes sense. so, again, the short answer would be no, I don’t think it would change how I feel—but I think anyone who feels so intensely distressed can't really imagine feeling otherwise, either, if that makes sense.

well, there you have it. if you hung in here that long, tell me how you did it cause it took me a year to get through all this!

a super thank you to all my awesome friends for asking such thoughtful questions, and I hope my responses were worthy of you guys' awesomeness.

this has been the hardest year of my life, and im grateful for my loved ones who have been here for me in any capacity and in particular to my amazing girlfriend who is my reason for fighting every day.

Violence Lies

noreply@blogger.com (Anonymous) — Wed, 15 Jun 2016 18:22:00 +0000

"What does it profit, my brethren, if someone says he has faith but does not have works? Can faith save him? If a brother or sister is naked and destitute of daily food, and one of you says to them, “Depart in peace, be warmed and filled,” but you do not give them the things which are needed for the body, what does it profit? Thus also faith by itself, if it does not have works, is dead."

- James 2:14-17

faith without works is dead. peoples children are dead. childrens mothers and fathers are dead. brothers, sisters, grandparents, nieces, nephews, students are dead. teachers are dead. husbands and wives and boyfriends and girlfriends and friends are dead. and your prayers aren't doing anything to help them. your prayers make you feel good, they make you feel like you've done something when you pray or you share an image on facebook or you discuss your outrage on your lunch break and sadly shake your head saying, "what a tragedy."

it is a tragedy. children are dead. every single person laying in the morgue or a cemetery today was someone's child--including the people who killed the rest of them. we talk about gun control and freedom and fear and terrorism, and we debate and take sides and politicize all of it, and somehow in all the conversation that takes place nothing ever happens. the hate continues, the violence continues, the tragedy continues, and whether its the queer community or an elementary school or a movie theater, the motive is the same. it's hate. someone has to hate to do something so awful. and we can't wrap our heads around it, and so the people who commit these awful crimes are demonized. "they're not even human." but you know what? they ARE human. they're someone's child, too. and if i can steal a few words from jed bartlet, who has something to say for all of these unimaginable horrors, they weren't born wanting to do this.

these shooters, these murderers, these rapists and gangbangers and terrorists were not born wanting to do these things. they were born innocent and pure, just like all of us were, and then things went to hell and the world failed them. WE failed them. we fail each other every single day. all of us.
these tragedies that plague us *are* preventable. they are a failure on ALL of our parts, every single one of us. whether we're talking a mass shooting or a guy who stabs his girlfriend to death and mutilates her body or a parent beating a child or someone torturing animals in a fighting ring. every act of violence is an act of failure. it's an act of education and religion and cruelty and abuse and hate hate hate. children are not born into this world hating. we teach them to.

we create monsters and then rid ourselves of responsibility and make them "other" so we don't have to acknowledge our failures.

i understand that many people out there can't do more than offer thoughts and prayers. that you may not be able to donate blood or money or volunteer. you probably feel helpless, just like i do. you don't know what else to say or do. so im here to help you. what can you do? you can teach people around you not to hate. you can speak up when someone you know is being abused or committing abuse. you can be there for someone with mental illness no matter how exhausting they are. you can think twice before making disparaging remarks in front of your children and you can correct other people who make disparaging remarks in front of theirs.

will they appreciate it? probably not. but when they tell you, "this is my child, and i will raise them how i see fit." you can tell them, "your child didn't know how to hate until you taught them to." maybe it will make them think, maybe it won't. but you can try. because THOSE are the thoughts and prayers we need. we need action, we need change, we need people to be aware that they are teaching their children to hate, that they are creating a monster where there wasn't one. that we are failing our children and WE have to change.

every single act of violence is a reflection on ALL of us. every single one. they weren't born wanting to do this.

"Apathy kills anger - and this is what ya choose.
There's always gonna be somebody who will lose.
Did ya ever stop and think about the world as is.
Life's about living, can't believe it's come to this.
It's not about me. it's not about you.
It's not about them or what they do.
It's not about pride, it's about
We must all understand:
Violence lies."

- Bif Naked, Violence

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

noreply@blogger.com (Anonymous) — Mon, 13 Jun 2016 23:57:00 +0000

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?

Dear 'Maggots'..

noreply@blogger.com (Anonymous) — Tue, 07 Jul 2015 14:03:00 +0000

I read an interview once with Shawn "Clown" Crahan of Slipknot in passing. It popped up on my Facebook feed and I was intrigued by the promise of an explanation as to why he dubbed Slipknot fans "Maggots". In the very powerful and moving interview he gave, he said something that stuck with me.

"We’re not just a band, we’re a fucking culture–I know this. We have so many fans that I can’t even tell you because I would be incorrect. And we are one in the same, we are equal, we are together forever."

It's been a long time since my metalhead days—though I am definitely still a freak and anyone getting in the car with me knows they'd better bring some earplugs if they're not down with some heavy bass and metal voices—but the metal culture in general has always been a place where I felt at home, where I could connect. From something as simple as a nod to someone else wearing a band shirt to the absolute lifeline it provided me as a severely messed up teenager, there's an invisible string that connected me with every other lost soul on this planet who sought solace in the music. And so Clown's words certainly resonated with me—and more so now than ever.

About a year ago I had to start using a wheelchair on bad days or for anything requiring what my body feels is "excessive" walking, like going from my car into my classroom. My legs give out on me randomly, and I get dizzy/lightheaded, weak, and sometimes I fall. I have a feeding tube, but the feeds frequently make me sick and cause severe intestinal cramps--and even when they dont, my goal rate for my pump is a pipe dream, so I'm still not getting all the nutrition I need. I have a faulty autonomic system, which means my body has trouble regulating involuntary things like blood pressure, heart rate, and body temperature. I am nearly always nauseous and I am always in some level of pain. Some days I get by and some days I can't function.

My doctors believe that most of my medical problems (which include gastroparesis, dysautonomia, hyperthyroidism, eosinophilic gastroenteritis, and increasingly slow intestinal motility) are actually symptoms of a genetic mutation in the mitochondria of my DNA. Mitochondrial Disease is a misleading name, because there are thousands, if not more, of types of 'Mito', that can affect any part of the body that has mitochondria (everything except red blood cells) to any degree. Most forms of Mito can't even be tested for, and the genetic tests for the handful of types they can test for are frequently inconclusive or inaccurate and prohibitively expensive (the most basic blood test that my neurogeneticist ordered was nearly $20,000 and insurance usually won't pay for genetic testing, especially if you have Medicare/Medicaid.)

The mitochondria are like batteries for your body's cells. When there's a malfunction in the mitochondria, it's like having a dying battery in your flashlight. The light might come and go, or get progressively dimmer until the battery is completely drained. This is what happens to a human body with mitochondrial disease. And at this point, without the ability to do further testing, the belief is that this is what is happening to my body.

Because the past few months have been so crazy for me, I've been very bad at keeping up with all my loved ones on Facebook, especially since Facebook prefers to show me articles, pages, and picture shares over showing me the actual posts from said loved ones. The combination of this meant that I didn't remember (cognitive function is for squares) the conversation we had awhile back, that Stacy was planning to fundraise on my behalf (she asked if it would be okay)--so I didn't realize/remember it was going on, until she messaged me the other day about it. And when I saw how many people were involved, I was completely blown away to the point of being speechless--and anyone who knows me will tell you, it's very rare for me to not have something to say. ;)

when i said i wanted a new stomach
this isn't exactly what i had in mind.

Since then, I have gone back and read her posts on Facebook and Instagram, saw the article on Slipknotiowa.com, and cried several times. Aside of being so incredibly grateful to have a friend as amazing, smart, funny, supportive, and beautiful inside & out as Stacy (as I have been as long as we've known each other), I am blown away by her kindness, and by the amazing outpouring of support from the Slipknot community.

And this is why I am thinking back to that interview with Clown. Because I am looking at the <a href= GoFundMe page, and I am overwhelmed by the number of people who have been willing to help someone they don't even know—and even more than that, the encouragement and support in the comments. It's no secret that chronic and terminal illnesses carry depression with them--it's kind of inevitable. And when you find yourself filled up with sadness, a single kind word can mean an awful lot.

Outsiders look at the people lining a mosh pit or walking around with spiked jewelry and crazy hair, and they see something scary and ugly. But what I see is a community of people who have been freaks, outsiders, weirdos, and losers their entire life, who know what it's like to get kicked down and then stepped on. People who have refused to stay down, and have built their hearts up to resist whatever pain the outside world has to offer. I see a community of people who find solace and love and inner peace in the music, comfort in the culture, and the sense of belonging that a family gives you—and we are all a family. We are all connected by that invisible string, and when one person falls down, the rest of us feel the tug, and then we have a choice to either pull that person back up on their feet or cut the string and let them fall.

I am grateful beyond measure that you all have reached your hands out to try to help me stand up again. Thank you for not cutting the string and letting me fall. Thank you for letting me be part of the family.

\m/ \m/

"And they are beautiful, and, without them, I am nothing."
– Shawn "Clown" Crahan, Slipknot

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

noreply@blogger.com (Unknown) — Thu, 07 May 2015 18:15:00 +0000

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

noreply@blogger.com (Unknown) — Fri, 27 Feb 2015 00:07:00 +0000

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.

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

noreply@blogger.com (Unknown) — Sat, 06 Dec 2014 18:21:00 +0000

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

i am also white.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

all somebody’s child, too.

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

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

some days it's all worth it.

noreply@blogger.com (Unknown) — Sun, 06 Jul 2014 15:13:00 +0000

some days are perfect
and some simply could not get worse
some days it's all worth it
and some days this life is nothing but a curse

- "inside out", sara bareilles

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

me and my super-smart grampa, circa 2010 or so, before i got seriously ill.
and clearly before i lost over 70lbs. hey there, chubbyface!

from the time i was a very, very small child, i was usually the smartest person in the room. this isn't me being full of myself--i was reading chapter books by the time i turned three years old and when i was given an IQ test at 5, my IQ was a mere two points lower than my grandfather's--a man who was invited to join MENSA.

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

the frog is very happy about this tubie pad.

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

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

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

circles are overrated. as are simple
straight stitches. zigzag 4 lyfe

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

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

"my sewing machine has feet?"

indeed, when i made this little tubie pad, i began without knowing what the difference between a spool of thread and a bobbin was.

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

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

"i want kan*dee," circa 2001 or so;

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

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

¹ PLUR - the raver's core belief system.
Peace. Love. Unity. Respect.

it didn't really go well. trying to be someone besides who you really are usually doesn't.

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

care bear themed phat pants from enlightenedlibra.

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

pants, believe it or not.

my overzealous pins.

i decided to go with a pink base because pink is my favorite color and before i had even gotten as far as tracing the paettern, i had already decided that i would be wearing these pants an awful lot. i discovered along the way that while sewing IS something that has to be learned, it's actually not as hard as it looks. well, at least, it's not that hard to do simple projects. i am not going to pretend that there aren't a LOT of people out there that are ridiculously talented with a sewing machine and can make super awesome stuff thats far beyond my level. but basic stuff? definitely not as hard or scary as it looks. (or looked to me!)

gunnery sergeant tigger² inspecting my work.
for the record, he approved.

i went a bit overboard with pins on the first leg. i was very concerned that the fabric would just slide all over the place and everything would be ruined forever. by the time i got to the second pant leg, though, i had calmed down and was only pinning what was strictly necessary.

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

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

the waist of these pants came out just about as huge as it looks in the photos, but that was okay for two reasons:

they're phat pants. the bigger, the better,
and the more comfortable.
with an elastic waist, there needed to be
enough material to "scrunch" up around the waist for the look i was aiming for.

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

and yes, i also used care bears because i love care bears. this part was probably the easiest. i attached the strip of care bear material and then folded it over to create a tunnel for the elastic waistband. while stitching the fold, i stitched back and forth across the original seam that attached the care bears to the pink, thus reinforcing the seam. i left a bit of overlapping pocket open so that i could put in the elastic and possibly later a

drawstring. (for anyone who cares, i used a very tight zigzag stitch to complete the elastic strip into a loop, and i went over it four times back and forth to make sure it would not detach from itself. these pants may be very, very far from perfect but they're strong at least.

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

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

attaching the waist after 6 straight hours of work and while
obviously very medicated, judging by my eyelids.

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

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

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

and that, my friends, is worth absolutely everything.

the chubby tubie and other medical marvels

noreply@blogger.com (Unknown) — Mon, 16 Jun 2014 03:09:00 +0000

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!

noreply@blogger.com (Unknown) — Thu, 08 May 2014 19:02:00 +0000

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. :)

Book Recommedations

noreply@blogger.com (Unknown) — Fri, 02 May 2014 17:26:00 +0000

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

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

DYSTOPIAN/POST-APOCALYPTIC

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

MENTAL HEALTH/GENERAL STRUGGLES/AUTISM

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

CHRONIC/TERMINAL ILLNESS

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

GLBTQAP+

(gay, lesbian, bisexual, trans*, queer/questioning, asexual, poly, et al)

girl walking backwards by bett williams
dive by stacey donovan
keeping you a secret by julie anne peters
empress of the world by sara ryan
annie on my mind by nancy garden
grl2grl by julie anne peters
am i blue by various (anthology including francesca lia block & bruce coville)
i was a teenage fairy by francesca lia block

GHOSTS & SUPERNATURAL

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

GENERALLY AWESOME BOOKS

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

Autistic Shutdowns: A Visual Aid

noreply@blogger.com (Unknown) — Sun, 27 Apr 2014 14:30:00 +0000

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

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

Down the Autism Rabbit-Hole and Back Out

noreply@blogger.com (Unknown) — Sat, 19 Apr 2014 21:09:00 +0000

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

"i miss buffy the vampire slayer" by megan gogerty - lyrics

noreply@blogger.com (Unknown) — Wed, 26 Mar 2014 03:26:00 +0000

i wanted to post these here because i can't seem to find complete, accurate lyrics to megan gogerty's most amazing song, "i miss buffy the vampire slayer", and that makes me sad. so here they are. i hand typed them, any errors are my own doing. no copyright infringement intended, just putting this out there for other fans to enjoy. :)

(also, this is the original version.. in later performances she changed "the OC" to "MTV" because the OC hasnt been on in forever.)

ON WITH THE LYRICS! (and video of course.)

<iframe width="420" height="315" src="//www.youtube.com/embed/atiqQsvsn3I" frameborder="0" allowfullscreen></iframe>

"i miss buffy the vampire slayer"
by megan gogerty

i miss buffy the vampire slayer, oh god i miss that show
i miss buffy the vampire slayer, oh god i miss that show
and i know that times goes on and things must change
and all things pass away
but it’s a dark and scary world out there and nothings on tv

for a superhero girl vibe i used to watch some "alias"
and for teenagers and their drama i guess there's "the OC"
but i miss buffy the vampire slayer, oh god i miss that show
i miss buffy the vampire slayer, oh god i miss that show

and i never could get into watching angel, god knows I tried.
and firefly was lovely but it was gone in like a day.
and the actors have moved on, they're doing movies like "american pie"
i think about them often, like a friend who's moved away.

and a friend of mine met the guy who played xander at a party
and she said in real life he was kind of disappointing.
i said "of course he's disappointing, this is real life and he's an actor.
and in real life, everyone's disappointing."

and i tried to get my friend alexis into it, but she was bored
she said "this is unbelievable, buffy’s never really going to die."
and frankly, i don’t understand how it’s possible i’m still friends with her
and maybe if her teen years had been harder she’d know why

i miss willow with her werewolf boyfriend
and willow with her lezzie girlfriend
and xander who proved you could save the world just by being you
and giles, oh god giles
you know, i could use a giles
and i miss buffy
before she made scooby doo

i miss buffy the vampire slayer, oh god i miss that show
i miss buffy the vampire slayer, oh god i miss that show

i want metaphorical mythology
coupled with ontological authenticity.
i really don’t think that’s too much to ask of a show.
and i'm this close to reading fan-fiction
but writing this song is pathetic enough
it's just when you love something, it's hard to let it go.

and yeah, i've got the dvd's
i guess they'll have to do.

the ziva david theory: NCIS is a buffy spin-off

noreply@blogger.com (Unknown) — Wed, 26 Mar 2014 02:17:00 +0000

warning: extreme nerding & fangirling ahead.
contains spoilers for the last episode of buffy the vampire slayer & the 2nd episode of NCIS season 3. i only warn that so the netflix-come-latelies don't flame me. that said, flamers will be doused in water.

i figured out the secret to the allure of one miss ziva david of the amazing show NCIS. if you dont know who she is and you have cable, i don't even want to know you right now.

the buffy episode "chosen" aired may 20th, 2003.

she activated slayers all over the world, of all ages and backgrounds.
every potential slayer became an actual slayer.

then a little over 2 years later (just enough time for a newly activated slayer to get some serious training), on september 27, 2005, ziva david appears in washington, DC as a well-trained killing machine.

how lucky for mossad that they found a super-strong pretty young woman to kill things for them, and she never even has to go to the gym to take out multiple men twice her size at the same time..

brb writing crossover fic.

OMG and eli is so not her birth father. he's her WATCHER. /fangirling (i know i know the font. just be glad it wasn't a giant blinking .gif.)

seriously though if you guys write fic about this, link me up so i can see it.. and give me credit.. or i'm sending gibbs after you. :)

i've made a little space for the cheese slices.

Rainbow Smoke Asian Cigarettes?

noreply@blogger.com (Unknown) — Fri, 14 Feb 2014 06:40:00 +0000

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!

parents and teachers and snow days oh my!

noreply@blogger.com (Unknown) — Wed, 12 Feb 2014 13:52:00 +0000

i've seen soooooooo many parents complaining about having their kids home cause of the snow days. think about all the stress and frustration you're feeling, and how much you'd simply like to throttle them every now and then.. and then picture there are 20 of your child (or children) in your house all day every day for 180 days a year, in five-day increments.

now, if you can afford it, go to hallmark and get a nice thank you card and a visa gift card (even if its only five bucks) and send it to your kids teacher, and write in your own words how much you appreciate the time, effort, money, and dedication they put in to raise your child for 7 hours a day 180 days a year.

if you can't afford it, make a card by hand. have your kid make a card and then you sign it. just say "thank you." i can assure you, that acknowledgement of the difficulty of nurturing and educating other peoples children, at a 25:1 ratio--the fact that you took two minutes of your day to appreciate them--will mean the WORLD to your kids teacher. a simple little thank you note.

trust me on this one. it means a lot. im engaged to a teacher--and when she gets a nice note from a student or parent, the first thing she does is text me a picture or read it to me or bring it over. because it means that much to her, that somebody thanked her for the very difficult job she does. please please show your kids teachers that you know what they sacrifice and how hard they work, and that you appreciate it. not just at christmas or the end of the year. a quick note now and then. a simple "thank you for making the year go so smoothly for [childs name]" or "thank you for having patience with [childs name]".. if you can't think of something specific, just a general "thank you for taking care of my child during the hours i can't be with him/her" will remind that teacher why they do what they do. and t when they finally are able to stop grading papers and writing lesson plans and planning class parties and documenting their teaching for the government and the million other things they do every day all day long, that little reminder will also make them much more pleasant towards their fiances.

trust me. do this simple thing, a tiny little note! the significant others of teachers around the world will thank you for it, and i know the teacher will appreciate it too.

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

noreply@blogger.com (Unknown) — Thu, 30 Jan 2014 04:52:00 +0000

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.

it's okay pluto, i'm not a planet either.

noreply@blogger.com (Unknown) — Thu, 23 Jan 2014 04:09:00 +0000

“Science, my boy, is made up of mistakes,

but they are mistakes which it is useful to make,

because they lead little by little to the truth.”
― Jules Verne, Journey to the Center of the Earth

for some reason, every time a conversation about space comes up, there's always a comment war about pluto. today i saw the above image, a gorgeous piece of art that unites all the planets and pluto together as one. as i was taking in this brilliant image, my eyes drifted to the comments section to the right, and felt the wonder quickly leaving my body with a heavy sigh as i saw that, once again, people were all but marching around with picket signs saying "boycott nasa", and their rabid fanatacism about something they know nothing about beyond that it's name is pluto and it used to be a planet led me to this blog entry. i see this all the time, any time the subject comes up. even on "the big bang theory" the brilliant physicist sheldon cooper takes neil degrasse tyson (guest starring as himself) to task for "demoting pluto".

and so i have to say to those insisting that pluto was a planet when you were young and therefore should still be a planet now.. things change. that's what makes science and the universe so beautiful. every day we learn new things, and we should be appreciative of that. pluto was labeled a planet when you were young because at the time, the best minds on our planet believed it was. but the best minds of today have a lot more knowledge and resources for gaining that knowledge, and as we discover new things about the universe, we must adapt to new truths.

we used to think the earth was flat, too, until the brightest minds figured out the truth: that not only is our planet round, but there are other planets out there that are too! defying new truths and information demonstrates a serious lack of ability towards adaptation. and science has also taught us that those beings which can not or do not adapt to their current environment are doomed.

instead of reacting like toddlers--kicking and screaming that pluto is a planet as though you and a test you took in third grade know better than brilliant, educated people who have devoted their lives to studying space--perhaps you should sit back for a moment and think about the beauty of discover, about how much information is right there at your fingertips, about the amazing technologies we've developed.

our grandparents went through life learning only what was taught in a classroom and knowing of the world only what they saw on the evening news or read in a news paper, if they even had access to those things. and here we are, with all of history, all of science, every single piece of human knowledge in the world, only a few pushed buttons away. you can learn anything you want to within seconds.

so why, in the face of all that, is it so very important to you to deny those beautiful truths? if you truly feel that pluto should still be classified as a planet, go to school. study the sciences. learn everything you possibly can about the universe and then go work for NASA and prove them wrong. otherwise, you're just wasting a perfectly good brain by clinging to falsehoods simply because they're familiar to you and more comfortable than forcing your brain to process and understand new ideas.

"Discovered in 1930, Pluto was originally classified as the ninth planet from the Sun. However, its status as a major planet fell into question following further study of it and the outer Solar System over the ensuing 75 years. Starting in 1977 with discovery of minor planet 2060 Chiron, numerous icy objects similar to Pluto with eccentric orbits were found. The most notable of these was the scattered disc object Eris—discovered in 2005, which is 27% more massive than Pluto. The understanding that Pluto is only one of several large icy bodies in the outer Solar System prompted the International Astronomical Union (IAU) to formally define what it means to be a "planet" in 2006. This definition excluded Pluto and reclassified it as a member of the new "dwarf planet" category."
- Wikipedia

thankful.

noreply@blogger.com (Unknown) — Thu, 28 Nov 2013 15:37:00 +0000

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.

Review: The Hunger Games: Catching Fire

noreply@blogger.com (Unknown) — Sun, 24 Nov 2013 01:24:00 +0000

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.
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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."

Why you don't adore me?

noreply@blogger.com (Unknown) — Fri, 22 Nov 2013 04:16:00 +0000

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.

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

noreply@blogger.com (Unknown) — Mon, 18 Nov 2013 21:19:00 +0000

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: http://stuffwhitepeoplelike.com/2008/01/23/18-awareness/ )

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.

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

noreply@blogger.com (Unknown) — Fri, 01 Nov 2013 19:37:00 +0000

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?