Tuesday, July 7, 2015

Dear 'Maggots'..

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/ Devious \m/

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

Thursday, May 7, 2015

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

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

- Lawmaker looks to ban [kratom] in NJ

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

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

“They should get rid of it,” said Brick resident Hannah Hall, “There are people getting high around here. Kids are dying.”
- Lawmaker looks to ban [kratom] in NJ

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

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

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

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

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

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

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

and now all i do is dream about leaving it.

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

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

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

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

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

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

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

a few decades ago, i would already be dead.

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

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

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

i hear the party line response:

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

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

except, oh wait. they havent:

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

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

portugal's stats:

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

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

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

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

i ate through my nose for a year
before they made the tube a
permanent one in my gut.
 im sick of doctors that dont listen or care, and a government that would rather i just go die and stop costing them money.

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

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

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

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

im sick of insurance companies making decisions instead of doctors.

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

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

im sick and nobody gives a damn.

because there are people getting high.

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

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

dead people don't cost anything.

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

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

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

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

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

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

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

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

Thursday, February 26, 2015

Krazy for Kratom Diary, part 1

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

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

Kratom Resources:

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.