The title of this is misleading. This isn't just things you don't want to hear--it's things you don't want to hear about things you don't want to hear, and about leaving me alone to speak truth to power while you wait out the storm inside and recycle what I said six months later, or put a richer accent on it, or both.
Specifically, I am going to tell you that which I have told you multiple times. About my own vincibility and vulnerability. Maybe if I say it on Autistics Speaking Day you will make a pretense at listening. Gods know you never have before.
I really don't know what gave you the impression I'm impervious to the verbal abuse heaped on me as I say things parents don't want to hear and you nod and hide. Is it that I've been there before? That's crap and we all know it. Not a single one of you would think that I developed an immunity to bleeding because I've been cut before.
Wait just kidding. So many of you leave me to weather the physical threats and attacks alone as well. Apparently you do think I no longer bleed! Neato! I haven't. I would not have scars if I had. I still bleed.
So, autistic community, I need you to remember I have human psychology and physiology. I don't draw fire off you for funsies. I don't do it because it has no effect on me. It digs into the C-PTSD wounds that you know about and conveniently ignore. I do it so that the next generation will have it better. I am a Gryffindor. I am good, not necessarily nice, and I am brave to my own detriment. Stop making me be brave alone. I've lost my faith in most of you, for using me.
I'm really over being the meat shield for dozens and dozens of people, many of whom have more resources than me. You are hiding from physical, not just emotional, attacks behind a 5'4" woman with adrenal insufficiency. I need you to think about the implications of that. You're willing to knowingly put me in fatal danger to keep yourself relatively safe.
You steal my words.
You steal my ideas.
You splain tactics that have failed a decade ago like they're new.
And you hide behind me from things that will literally kill me far more easily than they will kill you.
That's some bullshit, autistic community.
Parents, you need to fix your house in this regard too. I see you sitting there while your cohort abuses us. Must be nice to be able to hide while people already hurting fight for your kids & you can basically stay out of it. It must be nice to ignore that this will never not be raw for so many of the Warriors.
Don't think I don't notice you using my and other autistics for our activism credentials and then holding to the parent supremacy line the moment things get heated. Don't think I don't see it.
Maybe you're afraid. That's a luxury not afforded to all of us. It must be nice to be allowed normal human vulnerabilities.
I wouldn't know. I've been assumed too used to it for it to matter since before I can remember. Others decided I don't have those anymore. And y'all use that excuse too.
I'm not as strong as you lie to yourselves & pretend I am. I value justice more than I value my own safety, as do many people who've been where I have. Taking advantage of that is still cowardly. You need to be better.
Tuesday, November 1, 2016
Saturday, April 30, 2016
Don't call me "talented"-BADD adjacent post
This post wasn't exactly written specifically for BADD like my posts for it usually are, but there's an aspect of ableism the phenomenon I'm writing about. There's also a big pile of ableism in the life experiences that lead to my reaction to being cast as "talented". So this is BADD adjacent, bc of timing & because a lot of disabled people relate, based on my small contacts.
Please don't cast me as "talented" or "a natural". Unless you're talking about hyper mobility or pattern recognition, I'm probably not, and it really freaks me out.
The first reason this freaks me out is easy to comprehend: it erases my effort. Hard work beats talent because hard work shows up. I'm probably not "a natural"; my ass is showing up. That deserves recognition, dammit. I'm way more impressed with someone who puts in the hours than someone who just magically can do things, why are you not?
And then you get into the muddle of confusing, "wow you have issues" things. Maybe I do have issues. But that doesn't make this less valid. You don't have to understand it for it to be real, and these reasons were directly caused by other people. So go roll your eyes at them.
The first bit is a common twice exceptional kid thing, I think. I need to be allowed to be not good at things. In my youth (& let's face it, to this day) my worth was determined but what I could do--especially that which came naturally. Things that didn't were considered lost causes. Apparently autistic kids & kids considered smart are born with a full suite of abilities waiting to be untapped, and if it doesn't happen on the first try it is never going to happen. I internalized this attitude before I knew that what I was surrounded with wasn't actually objectively factual. I've had to fight every breath for the right to do things I had to work for (ask me about gymnastics sometime...), and I had no support in learning how to do that work. Instead of "try again!" cheerleaders I had a chorus of voices telling me that there's so much I am good at, why not focus on that? Why do you care about these things that are hard?
It's important for me to do things that are hard. I'm just now starting to get comfortable with the idea that things are hard and I have a ceiling in things and that's ok. Other people also need to be comfortable with this, or at least keep their discomfort to themselves. This is hard-won. I am not good at taking failure gracefully. Don't sabotage my progress.
There's another factor too. I brushed lightly on it in my Dream Student/Nightmare Student post last summer. If I am given room to fail or have to work hard without it being a big production, without "wow I expected more of you" or disappointment or "maybe you should stop doing the thing" or what have you, I do a lot better. A couple of the arenas that people mistake me for a natural in are adjacent to things I've got much experience in coupled with an environment where no one expects perfection right away. Where it's okay to not be a natural. Where it's acceptable that if things change I can't actually adapt quickly. If you put me in an environment that demands immediate excellence, rather than being pleased with it, then I am a mess. The weight of expectations leads to anxiety & actively impedes participating in the thing. Even if it's patterns. Even if it's not getting dizzy. Even if it's code breaking.
Too often the twice exceptional kid gets told she is "so smart" and that is presented as her defining feature and her redeeming value. Anything autistic people in particular are good at gets written off as a splinter skill or savant skill. We're weirdly presumed incapable of learning, so everything we know we must have inherent aptitude for. We are not able to persevere, merely perseverate.
Give us credit for our work. For trying. For progress. For doing things even though they are hard.
Lots of us cannot deal with compliments on abilities at all. I can, but within certain guidelines. Don't tell me I am good at a thing, please. Do not ever tell me I am inherently good at a thing. I will freeze. I will tell you why you are wrong. I will know that not having a skill without trying isn't safe around you. Tell me that an aspect of the activity or subject has improved, or looks nice, is dynamic, some appropriate adjective for the subset. My falls are nice. I made saltatory conduction make sense. You love my toe point. I have a good eye for landing deductions. My arrow shooting form is efficient. Whatever. But not the blanket thing please.
And for the love of all that is good, don't ever say that I'm good "for a disabled person". That's pretty much a different post, but if I'm good, I'm good for an anybody person, and I work just as hard as anyone of my skill level. Acknowledge that.
Saturday, April 23, 2016
I know why your child acts out: an analogous situation
As you all know, I have photosensitive epilepsy. I have had a long long struggle with trying to get people to maybe consider not killing me. Long. Exhausting. Futile.
Today I went to a cross disability conference. Someone not me (hooray!) took the initiative in dealing with the flash issue, I got there & they told me and I was like "hooray!" and then went to get coffee before my first session.
Long time readers & people who know me personally know, I've done a lot of reaching out, conversing, talking to people about this issue. They know that I'm pretty much always met with lies & flashing.
We went to our first session, which was quite good, & a photographer (supposedly they had all been talked to already) flashed his flash. It was too early in the morning for this shit. I chucked my pen at him. Someone from the organization putting on the conference took him out to the hall, told him he really cannot do that, & returned my pen to me.
Not a single other flash happened.
Announcements were made. They were observed.
Throwing a pen worked. "Using my words" has never worked.
Ask nicely? They say "oh of course" or "well we can try but no promises" and it's like a godsdamned disco ball. Tell meanly and they act all put out, like it's the world's biggest favor, maybe they'd be more accommodating if you begged more, and it's a godsdamned disco ball. Enlist someone else to ask and they get tone policed no matter what they do (though it may not be a disco ball). Talk with them for years after they have a board member harass you with a camera, it's all promises and scapegoating a man with high support needs and yet more flashes.
But throw a pen? I believe the behaviorists in the audience would call it "one trial learning".
And it was quick and it was easy. Tactful conversations up a power gradient are stressful. Rude conversation up a power gradient is stressful. Waiting for other people to talk so I don't get upset and throw a pen is stressful. All of these things are draining, hard, and not consistently in my skill set.
And they are ineffective.
Acting out worked. And it was efficient. It was so easy. It actually really pisses me off that I have engaged my impulse control for so long, when doing the easy automatic thing, which happens to be the socially inappropriate thing, was so easy and effective. I'd have thrown a pen a decade ago if I'd known it was this easy.
So, like, maybe when "using your words" is thoroughly ineffective frustration, but dumping a desk works? You're gunna keep dumping the desk.
Yeah, I know exactly why.
Today I went to a cross disability conference. Someone not me (hooray!) took the initiative in dealing with the flash issue, I got there & they told me and I was like "hooray!" and then went to get coffee before my first session.
Long time readers & people who know me personally know, I've done a lot of reaching out, conversing, talking to people about this issue. They know that I'm pretty much always met with lies & flashing.
We went to our first session, which was quite good, & a photographer (supposedly they had all been talked to already) flashed his flash. It was too early in the morning for this shit. I chucked my pen at him. Someone from the organization putting on the conference took him out to the hall, told him he really cannot do that, & returned my pen to me.
Not a single other flash happened.
Announcements were made. They were observed.
Throwing a pen worked. "Using my words" has never worked.
Ask nicely? They say "oh of course" or "well we can try but no promises" and it's like a godsdamned disco ball. Tell meanly and they act all put out, like it's the world's biggest favor, maybe they'd be more accommodating if you begged more, and it's a godsdamned disco ball. Enlist someone else to ask and they get tone policed no matter what they do (though it may not be a disco ball). Talk with them for years after they have a board member harass you with a camera, it's all promises and scapegoating a man with high support needs and yet more flashes.
But throw a pen? I believe the behaviorists in the audience would call it "one trial learning".
And it was quick and it was easy. Tactful conversations up a power gradient are stressful. Rude conversation up a power gradient is stressful. Waiting for other people to talk so I don't get upset and throw a pen is stressful. All of these things are draining, hard, and not consistently in my skill set.
And they are ineffective.
Acting out worked. And it was efficient. It was so easy. It actually really pisses me off that I have engaged my impulse control for so long, when doing the easy automatic thing, which happens to be the socially inappropriate thing, was so easy and effective. I'd have thrown a pen a decade ago if I'd known it was this easy.
So, like, maybe when "using your words" is thoroughly ineffective frustration, but dumping a desk works? You're gunna keep dumping the desk.
Yeah, I know exactly why.
Saturday, April 2, 2016
I'm aware of your hate.
It's yet another "autism awareness day". Or autism acceptance day if you run in my circles.
The rhetoric never gets better. We can tone it down taupe, red instead, light it up gold, burn it down beige all we want, but we don't control the narrative.
No matter where I turn this month, I am forced to be aware of one thing:
The well of your hate for me & mine is truly bottomless.
There's a slow trickle throughout the year. My Autistic siblings are murdered and the media reports naught but sympathy for the killers. Scary people are armchair diagnosed as sharing my neurotype, with no evidence but that you hate us all. People fundraise to get rid of us.
Epidemic. Emergency. Tsunami. Burden. National crisis. Tragedy.
Those words never stop echoing in my ears, not really, but I can pretend for whole hours at a time that you almost think I'm people, 11 months of the year.
But in April you won't give me that. It's 30 days of solid "we hate you. You should not exist."
It's not just the gush of threats of bodily harm. Those ebb more with current events than with the calendar, mostly. It's the 24 hours wall to wall endless rush of hate and resentment.
It's parents who admit to treating their kids worse than animals being treated as heroes.
It's people giving money to organizations that pay people to go on camera saying they want to drive kids off the bridge.
It's the endless barrage of people telling me I don't know my experiences because of abilities they assume I have, damn the facts.
It's the other barrage of people telling me that my fear-driven anger with the narrative is unreasonable & a reason I'm too broken to live.
These same people are afraid of autism, but we may not be afraid of the consequences of their hate.
It's blue lights, because "blue is for boys and only boys have autism".
It's the legacy of little puzzle head.
It's the same fear based tactics since I was 16, & they get more frenetic rather than segueing to calming the hell down.
It's how calmly people tell me they don't blame my mom for her violence.
It's uncritical presentation of Indistinguishable from Peers as a good & damn the consequences.
It's the lauding of Good Autistics from rich white moderate backgrounds while ignoring or even taking steps to silence those of us born unrespectable.
It's the rain of infantiliaztion.
It's " do you want to donate money so we can prevent people like you from being born?"
It's the words that say more about you than about us:
Lacking empathy. Rigid. Unpredictable. Violent. In their own world. Perpetual child. Noncommunicative. Soulless. Stolen. Lost. Missing.
It's being reminded it's a tragedy that we have a normal life span. Except we don't. We die 30 years early. Even that is too long for you all.
Everywhere I look you remind me that you hate uhat you hate us. You want us gone. A word for the history books.
I'm aware of the meaning of 'awareness.' Are you?
The rhetoric never gets better. We can tone it down taupe, red instead, light it up gold, burn it down beige all we want, but we don't control the narrative.
No matter where I turn this month, I am forced to be aware of one thing:
The well of your hate for me & mine is truly bottomless.
There's a slow trickle throughout the year. My Autistic siblings are murdered and the media reports naught but sympathy for the killers. Scary people are armchair diagnosed as sharing my neurotype, with no evidence but that you hate us all. People fundraise to get rid of us.
Epidemic. Emergency. Tsunami. Burden. National crisis. Tragedy.
Those words never stop echoing in my ears, not really, but I can pretend for whole hours at a time that you almost think I'm people, 11 months of the year.
But in April you won't give me that. It's 30 days of solid "we hate you. You should not exist."
It's not just the gush of threats of bodily harm. Those ebb more with current events than with the calendar, mostly. It's the 24 hours wall to wall endless rush of hate and resentment.
It's parents who admit to treating their kids worse than animals being treated as heroes.
It's people giving money to organizations that pay people to go on camera saying they want to drive kids off the bridge.
It's the endless barrage of people telling me I don't know my experiences because of abilities they assume I have, damn the facts.
It's the other barrage of people telling me that my fear-driven anger with the narrative is unreasonable & a reason I'm too broken to live.
These same people are afraid of autism, but we may not be afraid of the consequences of their hate.
It's blue lights, because "blue is for boys and only boys have autism".
It's the legacy of little puzzle head.
It's the same fear based tactics since I was 16, & they get more frenetic rather than segueing to calming the hell down.
It's how calmly people tell me they don't blame my mom for her violence.
It's uncritical presentation of Indistinguishable from Peers as a good & damn the consequences.
It's the lauding of Good Autistics from rich white moderate backgrounds while ignoring or even taking steps to silence those of us born unrespectable.
It's the rain of infantiliaztion.
It's " do you want to donate money so we can prevent people like you from being born?"
It's the words that say more about you than about us:
Lacking empathy. Rigid. Unpredictable. Violent. In their own world. Perpetual child. Noncommunicative. Soulless. Stolen. Lost. Missing.
It's being reminded it's a tragedy that we have a normal life span. Except we don't. We die 30 years early. Even that is too long for you all.
Everywhere I look you remind me that you hate uhat you hate us. You want us gone. A word for the history books.
I'm aware of the meaning of 'awareness.' Are you?
Monday, February 29, 2016
Rare Disease Day: on having something most doctors are unaware of
It's rare disease day (haaaa aren't they funny, putting it on leap day?) so today I'm going to talk about getting diagnosed with what is probably my rarest cootie.
I write a lot about autism & epilepsy. I have other stuff too because fuck me that's why. The hardest one to get diagnosed is also the most quickly life threatening (though the easiest to treat, for me): tertiary adrenal insufficiency.
What that means? Is that my hypothalamus does not send the signal to my pituitary to send the signal to my adrenal glands to release cortisol. The body does not release cortisol, which is necessary to maintaining homeostasis, without ACTH, released from the pituitary. The pituitary does not release ACTH without being told to via a burst of CRH from the hypothalamus. Make sense?
Here's the thing: it is also really fucking uncommon (especially without lesions in the brain. I have zero explanatory lesions in my brain) and has nonspecific symptoms. This made a diagnosis extremely hard to get.
Let us flash back to 2005. I competed my last trampoline & tumbling meet in March of 2005, because of the onset of some frightening symptoms. Everything (literally everything) hurt. I was running out of energy. Sleeping a lot, but my sleep schedule was backwards. Tired. Dropping massive amounts of weight. Did I mention I hurt everywhere? Very pale, by my standards. Fainting. An uptick in seizure activity. At one point, the world's actual worst headache (and this is coming from someone with cluster headaches; it is still the worst headache I have ever experienced). So, nonspecific signs of 90% of illnesses everywhere, right?
First they decided I was sick. They gave me a strong antibiotic for an infection that I think I did actually have. But people with Ehlers-Danlos Syndrome should not take ciprofloxin. That was a mess. Everything hurt even more. More seizures. I could not stand up because of the joint pain, which did not relent for almost a year.
Then they tested me for autoimmune diseases. Everything came back within normal limits except the inflammation marker, which was lower than expected (which actually isn't consistent with not making cortisol but whatever, bodies gunna body) and anti double stranded DNA. The rheumatoid factor and the ANA were both normal, & that's what they were really looking at. I did not appear to have an autoimmune disease.
I had to move because I was going to literally die living alone, and moving meant different doctors. While waiting the several months for a general practitioner, I ended up in the emergency room several times with severe unrelenting pain in my middle and my joints, as well as seizure injuries--rather than my usual partial complex seizures, I was also having atonic and tonic clonic seizures. Falls are dangerous. Consistently my vital signs were low, my electrolytes were a bit off, and they decided that it was a side effect of my medication or that I was full of shit. Because I was young, female presenting, on meds, and having a blood work profile they'd never seen that must be the issue.
As my body continued to be deprived of cortisol, and its homeostasis regulating effects, I got sicker. I was barely more than half my current weight at one point--I am pretty healthy looking now. Everything hurt. I was throwing up. I was not digesting the food I kept down. I'd only get out of bed to pee for weeks at a time, & most clothing hurt. I was able to bathe maybe once a week, & I had anxiety and was both always tired & never sleepy.
When I finally got in with the general practitioner I thought she might be useful. She...was the opposite of useful. First she suggested I had a virus; I had not left my place to be exposed to anything in literally 6 months, though I had been possibly exposed to West Nile (that world's worst headache? A more competent doctor who did antibody tests suggested that it was West Nile Encephalitis. And possibly causal of the AI but possibly not). She "does not want to hear that" and told me I was just depressed. I am no fan of minimizing depression. I am also not a fan of telling someone that they dropped 50 pounds and hurt everywhere and everything they love is gone because of it. Other way around, Doctor Useless. I'm depressed because my body has betrayed me and I can do nothing I love.
Doctor Useless talked about scheduling me for a colonoscopy because of the weight loss. Okay whatever. In the meantime I found self pay specialists (did I mention? I live in the US. I was uninsured as shit because Medicaid was only for people actually on SSI, children, & pregnant people. I was none of these things; getting on SSI takes forever).
When your doctor is this useless, and you are going to go over their head and go to specialists, you are required to self diagnose basically. Since the GP in my hometown had been exploring autoimmune options, I presented myself to a rheumatologist first. My main symptoms were still pain and fatigue (pain everywhere. My ribs hurt too much to breathe if I laid down) and the hometown doctor had waffled about with how the blood work might not have changed enough for diagnosis yet since I had been in good shape when I got sick. I also had persistent skin photosensitivity, which was a marked change from my baseline and is a symptom of lupus. So I went to the rheumatologist.
This was my first experience with going into honest to goddess shock. They confirmed that I am hyper mobile (as though that was ever in doubt) and did a bunch of blood draws. Almost 20 vials. They did the regular stuff, every autoimmune panel known to man, heavy metals & a couple other toxins, and nutrient profiles. Rather than my usual light headedness with the blood draw, I hit the floor, had a seizure, couldn't stop shivering. They had to keep me for observation for several hours.
The only suspicious things on that whole panel were slightly elevated metals, of all things, and reduced levels of several nutrients. They said my body would clear itself out on its own (accurate. I had been living in a condemnable place with metals in the paint & pipes less than a year before) and that I needed to take dietary supplements or eat better. The rheumatologist did not think either of these things was actually causal for my symptoms but did not know where to send me.
Here's the thing about having nonspecific but severe symptoms that no one can explain: it's real easy to fall down the quackery rabbit hole. Everywhere I turned, someone wanted to sell me detoxes or supplements or super foods or fancy diets. Since I actually knew what my numbers were for "toxins" (elevated but not going to kill me, nor enough to explain the duration & severity of symptoms, also the timing was wrong), and for reasons of other people in the household I was eating a diet clear of the popular dietary "toxins" anyway, I did not fall prey to these as easily as many people can. But the desperation makes sense. All you want is an answer & to feel better.
While searching for the next specialist I had another appointment with Doctor Useless. I had lost more weight, though really I was at the point where that should be impossible. I also had an extended EEG, where they caught a bunch of weird but nothing that was explicitly "we can cut this out". I threw up every day that I was in the hospital and had no blood pressure and didn't sleep and it was miserable. Never again. Doctor Useless again expressed her opinion that I had a virus or depression or yes, and tried again with the colonoscopy. That the clinic is slow is what kept me from dying on a colonoscopy table--that is a procedure that people with all the adrenal insufficiency diagnoses need stress dose steroids for.
In February of 2006, almost a year exactly after my sudden downward spiral, I got in to see an endocrinologist. He took one look at me, literally one look, and asked if I had ever been on prednisone? Did it make you feel better? I had not at that time. I did not have an answer. He sent me immediately for an ACTH stim test and blood draws on all hormones, especially ACTH and cortisol.
For an ACTH stim test, they take blood to measure your baseline level of cortisol. Then they inject you with synthetic ACTH. At 30 and 60 minute intervals they measure your cortisol again. About 15 minutes after the injection was the best I had felt in an entire year. I could skip, a short distance (muscle atrophy is a thing). I was awake. I was hungry. The perpetual nausea was gone. Everything I had read said that adrenal insufficiency was rare, but it seemed that it might be my answer, or the most disappointing placebo effect on earth.
The next morning I got a call from the endocrinologist with the good news: I had central adrenal insufficiency. Not Addison's, I would make cortisol just fine if the signal was sent, but it is not. He asked for my pharmacy information so I could start prednisone right away (now I take hydrocortisone, which is bioidentical with cortisol, but prednisone has a longer half-life and I was really sick so once a day dosing made sense. I think that was the rationale). I was also prescribed an injectable steroid that I would have to use if I couldn't keep pills down or got an acute significant injury.
Starting steroids was sort of a miracle, except the part where I will now spend the rest of my life explaining why I am on steroids. I take a physiologic dose of a stigmatized class of medications. It is exactly the same amount a person of my size and activity level would release. And yet I constantly have to explain that. Since I switched from prednisone to hydrocortisone, I am no longer immunosuppressed--my pred dose was just high enough to dampen things a bit. I am not on anywhere near enough for any of the rage or depression or other side effects like that, because I am on the same amount most people just produce on their own. No, I do not want to stop taking it, I like being able to live my life. The bruising is not because of steroid toxicity, it is because I am an extremely active person with a connective tissue disease. Yes, I have put on a buttload of weight since starting the steroids. Because I was substantially underweight and run mesomorphic. It's a good thing, really it is.
I'm no longer photosensitive, and I am Hapa, so my skin tone does run on the darker side of pale or the lighter side of medium and with very warm undertones, so at least once a year I get asked if I am sure it isn't Addison's (yes. Stop being racist. My skin has always looked like that except when I was too sick to move). No one was using my emergency injectable steroid, so they discontinued it. The pharmacy didn't know how to use the new one, so some day that's going to be exciting. Everywhere I look people are talking about the evils of cortisol. Which, like, fuck you. I almost died because I don't release that. But you people don't even know that's a possibility or what it actually does.
I've had a number of surgeries and had to explain to them patiently that they need to give me extra steroids or I will go from just fine to flatline the moment I feel anything. They almost didn't with my last surgery, but damn were they glad they did because upon awakening my body did some wild stuff. I've had some very scary times in emergency rooms with my heart rate below 50 and my blood pressure too low to accurately measure, where doctors just kind of unplug the yelling machine because they don't really care that someone multiply disabled & being very passive is going into quiet cardiovascular collapse in their hospital. They have never seen adrenal crisis so the obvious solution is to pretend it doesn't exist. It's a very quiet crisis.
I also deal with doctors who mishear that I said I have "tertiary adrenal insufficiency" as "I am a vaguely tired conventionally attractive woman who thinks I have adrenal fatigue". This is on the list of possible causes of death. Adrenal fatigue is not real but it is a trendy naturopathic diagnosis, and I live where naturopaths are taken a bit too seriously. Adrenal insufficiency is real. And it can be fatal. But they have heard more of the former than the latter, so they use their "hysterical woman" voice rather than their "I don't know what that is, we talked about it for 90 seconds in med school if that" voice. So that's exciting, ones rare disease being co opted as an explanation for why people feel crap. I'm not ok with that.
So. That's being diagnosed with a rare disease. It isn't like House at all. They look for other reasons even if they don't fit. They are uncomfortable with your treatment. You have to basically diagnose yourself first. You spend the rest of your damn life explaining it. And your meds get discontinued for lack of popularity.
Happy rare disease day?
I write a lot about autism & epilepsy. I have other stuff too because fuck me that's why. The hardest one to get diagnosed is also the most quickly life threatening (though the easiest to treat, for me): tertiary adrenal insufficiency.
What that means? Is that my hypothalamus does not send the signal to my pituitary to send the signal to my adrenal glands to release cortisol. The body does not release cortisol, which is necessary to maintaining homeostasis, without ACTH, released from the pituitary. The pituitary does not release ACTH without being told to via a burst of CRH from the hypothalamus. Make sense?
Here's the thing: it is also really fucking uncommon (especially without lesions in the brain. I have zero explanatory lesions in my brain) and has nonspecific symptoms. This made a diagnosis extremely hard to get.
Let us flash back to 2005. I competed my last trampoline & tumbling meet in March of 2005, because of the onset of some frightening symptoms. Everything (literally everything) hurt. I was running out of energy. Sleeping a lot, but my sleep schedule was backwards. Tired. Dropping massive amounts of weight. Did I mention I hurt everywhere? Very pale, by my standards. Fainting. An uptick in seizure activity. At one point, the world's actual worst headache (and this is coming from someone with cluster headaches; it is still the worst headache I have ever experienced). So, nonspecific signs of 90% of illnesses everywhere, right?
First they decided I was sick. They gave me a strong antibiotic for an infection that I think I did actually have. But people with Ehlers-Danlos Syndrome should not take ciprofloxin. That was a mess. Everything hurt even more. More seizures. I could not stand up because of the joint pain, which did not relent for almost a year.
Then they tested me for autoimmune diseases. Everything came back within normal limits except the inflammation marker, which was lower than expected (which actually isn't consistent with not making cortisol but whatever, bodies gunna body) and anti double stranded DNA. The rheumatoid factor and the ANA were both normal, & that's what they were really looking at. I did not appear to have an autoimmune disease.
I had to move because I was going to literally die living alone, and moving meant different doctors. While waiting the several months for a general practitioner, I ended up in the emergency room several times with severe unrelenting pain in my middle and my joints, as well as seizure injuries--rather than my usual partial complex seizures, I was also having atonic and tonic clonic seizures. Falls are dangerous. Consistently my vital signs were low, my electrolytes were a bit off, and they decided that it was a side effect of my medication or that I was full of shit. Because I was young, female presenting, on meds, and having a blood work profile they'd never seen that must be the issue.
As my body continued to be deprived of cortisol, and its homeostasis regulating effects, I got sicker. I was barely more than half my current weight at one point--I am pretty healthy looking now. Everything hurt. I was throwing up. I was not digesting the food I kept down. I'd only get out of bed to pee for weeks at a time, & most clothing hurt. I was able to bathe maybe once a week, & I had anxiety and was both always tired & never sleepy.
When I finally got in with the general practitioner I thought she might be useful. She...was the opposite of useful. First she suggested I had a virus; I had not left my place to be exposed to anything in literally 6 months, though I had been possibly exposed to West Nile (that world's worst headache? A more competent doctor who did antibody tests suggested that it was West Nile Encephalitis. And possibly causal of the AI but possibly not). She "does not want to hear that" and told me I was just depressed. I am no fan of minimizing depression. I am also not a fan of telling someone that they dropped 50 pounds and hurt everywhere and everything they love is gone because of it. Other way around, Doctor Useless. I'm depressed because my body has betrayed me and I can do nothing I love.
Doctor Useless talked about scheduling me for a colonoscopy because of the weight loss. Okay whatever. In the meantime I found self pay specialists (did I mention? I live in the US. I was uninsured as shit because Medicaid was only for people actually on SSI, children, & pregnant people. I was none of these things; getting on SSI takes forever).
When your doctor is this useless, and you are going to go over their head and go to specialists, you are required to self diagnose basically. Since the GP in my hometown had been exploring autoimmune options, I presented myself to a rheumatologist first. My main symptoms were still pain and fatigue (pain everywhere. My ribs hurt too much to breathe if I laid down) and the hometown doctor had waffled about with how the blood work might not have changed enough for diagnosis yet since I had been in good shape when I got sick. I also had persistent skin photosensitivity, which was a marked change from my baseline and is a symptom of lupus. So I went to the rheumatologist.
This was my first experience with going into honest to goddess shock. They confirmed that I am hyper mobile (as though that was ever in doubt) and did a bunch of blood draws. Almost 20 vials. They did the regular stuff, every autoimmune panel known to man, heavy metals & a couple other toxins, and nutrient profiles. Rather than my usual light headedness with the blood draw, I hit the floor, had a seizure, couldn't stop shivering. They had to keep me for observation for several hours.
The only suspicious things on that whole panel were slightly elevated metals, of all things, and reduced levels of several nutrients. They said my body would clear itself out on its own (accurate. I had been living in a condemnable place with metals in the paint & pipes less than a year before) and that I needed to take dietary supplements or eat better. The rheumatologist did not think either of these things was actually causal for my symptoms but did not know where to send me.
Here's the thing about having nonspecific but severe symptoms that no one can explain: it's real easy to fall down the quackery rabbit hole. Everywhere I turned, someone wanted to sell me detoxes or supplements or super foods or fancy diets. Since I actually knew what my numbers were for "toxins" (elevated but not going to kill me, nor enough to explain the duration & severity of symptoms, also the timing was wrong), and for reasons of other people in the household I was eating a diet clear of the popular dietary "toxins" anyway, I did not fall prey to these as easily as many people can. But the desperation makes sense. All you want is an answer & to feel better.
While searching for the next specialist I had another appointment with Doctor Useless. I had lost more weight, though really I was at the point where that should be impossible. I also had an extended EEG, where they caught a bunch of weird but nothing that was explicitly "we can cut this out". I threw up every day that I was in the hospital and had no blood pressure and didn't sleep and it was miserable. Never again. Doctor Useless again expressed her opinion that I had a virus or depression or yes, and tried again with the colonoscopy. That the clinic is slow is what kept me from dying on a colonoscopy table--that is a procedure that people with all the adrenal insufficiency diagnoses need stress dose steroids for.
In February of 2006, almost a year exactly after my sudden downward spiral, I got in to see an endocrinologist. He took one look at me, literally one look, and asked if I had ever been on prednisone? Did it make you feel better? I had not at that time. I did not have an answer. He sent me immediately for an ACTH stim test and blood draws on all hormones, especially ACTH and cortisol.
For an ACTH stim test, they take blood to measure your baseline level of cortisol. Then they inject you with synthetic ACTH. At 30 and 60 minute intervals they measure your cortisol again. About 15 minutes after the injection was the best I had felt in an entire year. I could skip, a short distance (muscle atrophy is a thing). I was awake. I was hungry. The perpetual nausea was gone. Everything I had read said that adrenal insufficiency was rare, but it seemed that it might be my answer, or the most disappointing placebo effect on earth.
The next morning I got a call from the endocrinologist with the good news: I had central adrenal insufficiency. Not Addison's, I would make cortisol just fine if the signal was sent, but it is not. He asked for my pharmacy information so I could start prednisone right away (now I take hydrocortisone, which is bioidentical with cortisol, but prednisone has a longer half-life and I was really sick so once a day dosing made sense. I think that was the rationale). I was also prescribed an injectable steroid that I would have to use if I couldn't keep pills down or got an acute significant injury.
Starting steroids was sort of a miracle, except the part where I will now spend the rest of my life explaining why I am on steroids. I take a physiologic dose of a stigmatized class of medications. It is exactly the same amount a person of my size and activity level would release. And yet I constantly have to explain that. Since I switched from prednisone to hydrocortisone, I am no longer immunosuppressed--my pred dose was just high enough to dampen things a bit. I am not on anywhere near enough for any of the rage or depression or other side effects like that, because I am on the same amount most people just produce on their own. No, I do not want to stop taking it, I like being able to live my life. The bruising is not because of steroid toxicity, it is because I am an extremely active person with a connective tissue disease. Yes, I have put on a buttload of weight since starting the steroids. Because I was substantially underweight and run mesomorphic. It's a good thing, really it is.
I'm no longer photosensitive, and I am Hapa, so my skin tone does run on the darker side of pale or the lighter side of medium and with very warm undertones, so at least once a year I get asked if I am sure it isn't Addison's (yes. Stop being racist. My skin has always looked like that except when I was too sick to move). No one was using my emergency injectable steroid, so they discontinued it. The pharmacy didn't know how to use the new one, so some day that's going to be exciting. Everywhere I look people are talking about the evils of cortisol. Which, like, fuck you. I almost died because I don't release that. But you people don't even know that's a possibility or what it actually does.
I've had a number of surgeries and had to explain to them patiently that they need to give me extra steroids or I will go from just fine to flatline the moment I feel anything. They almost didn't with my last surgery, but damn were they glad they did because upon awakening my body did some wild stuff. I've had some very scary times in emergency rooms with my heart rate below 50 and my blood pressure too low to accurately measure, where doctors just kind of unplug the yelling machine because they don't really care that someone multiply disabled & being very passive is going into quiet cardiovascular collapse in their hospital. They have never seen adrenal crisis so the obvious solution is to pretend it doesn't exist. It's a very quiet crisis.
I also deal with doctors who mishear that I said I have "tertiary adrenal insufficiency" as "I am a vaguely tired conventionally attractive woman who thinks I have adrenal fatigue". This is on the list of possible causes of death. Adrenal fatigue is not real but it is a trendy naturopathic diagnosis, and I live where naturopaths are taken a bit too seriously. Adrenal insufficiency is real. And it can be fatal. But they have heard more of the former than the latter, so they use their "hysterical woman" voice rather than their "I don't know what that is, we talked about it for 90 seconds in med school if that" voice. So that's exciting, ones rare disease being co opted as an explanation for why people feel crap. I'm not ok with that.
So. That's being diagnosed with a rare disease. It isn't like House at all. They look for other reasons even if they don't fit. They are uncomfortable with your treatment. You have to basically diagnose yourself first. You spend the rest of your damn life explaining it. And your meds get discontinued for lack of popularity.
Happy rare disease day?
Friday, February 12, 2016
Things at Autism Events that Make Me Uncomfortable
This post is inspired by an Autism Speaks walk & an Autism Society of Oregon "adult" conference several years ago).
-Parents with adult offspring talking for and about them while they stand right there mortified.
-Obviously sensory unfriendly surroundings (loud thuddy music? really?)
-Cognitive dissonance on full display--Lee Grossman & other CEOs who talk about 'these kids' at events ostensibly about adults? I'm looking at you.
-Being the only person to call people on their bullshit.
-Being scolded for this.
-Being thanked privately for this. What the fuck.
-The double standard for autistics & allistics.
-Grossly inappropriate cure the kids! talks at 'adult' conferences.
-Erasing of adults who are likely to be pushed into the cracks (you know, those of us who speak & can make you think we know things).
-Assumption that we have Ability A because we can do Task X.
-Being expected to be a universal translator.
-Being erased because I'm cute, female, and athletic.
-Parent-centered everything.
-Being hit on. A lot. Persistently. When I say not interested. Ad nauseum.
-Scaremongering, from anyone.
-The looks I get for taking care of my sensory needs.
-Being talked to like a toddler.
-Allistic professionals' continued insistence that their Unethical Treatment is ok & browbeating me to try to get me to agree.
-The continued pressure to cede my voice in autism issues because as an autistic person I clearly don't know what I need or want.
This was initially written in 2010. The only thing that has changed is Lee Grossman isn't still the CEO of Autism Society.
-Parents with adult offspring talking for and about them while they stand right there mortified.
-Obviously sensory unfriendly surroundings (loud thuddy music? really?)
-Cognitive dissonance on full display--Lee Grossman & other CEOs who talk about 'these kids' at events ostensibly about adults? I'm looking at you.
-Being the only person to call people on their bullshit.
-Being scolded for this.
-Being thanked privately for this. What the fuck.
-The double standard for autistics & allistics.
-Grossly inappropriate cure the kids! talks at 'adult' conferences.
-Erasing of adults who are likely to be pushed into the cracks (you know, those of us who speak & can make you think we know things).
-Assumption that we have Ability A because we can do Task X.
-Being expected to be a universal translator.
-Being erased because I'm cute, female, and athletic.
-Parent-centered everything.
-Being hit on. A lot. Persistently. When I say not interested. Ad nauseum.
-Scaremongering, from anyone.
-The looks I get for taking care of my sensory needs.
-Being talked to like a toddler.
-Allistic professionals' continued insistence that their Unethical Treatment is ok & browbeating me to try to get me to agree.
-The continued pressure to cede my voice in autism issues because as an autistic person I clearly don't know what I need or want.
This was initially written in 2010. The only thing that has changed is Lee Grossman isn't still the CEO of Autism Society.
Tuesday, February 2, 2016
"You're a skilled archer. Why do you have a stalker?"
Content notes: this discusses stalking & other boundary violations. It also discusses systemic issues that allow that. There are pictures, including a picture of a vaguely torso shaped thing with arrows in.
This week has been weird and basically the last semi-normal thing I remember from this weekend is being asked the title question on Saturday morning, so I am going to give context. And then I am going to answer said question.
Context the first:
I brought this target to archery, like one does, because I'd just heard from a long time very unwanted internet harasser. Again.
It's the initials of said long time very unwanted internet harasser, with my editorial comments, including the words "creepy sad little stalker".
So. Then the question was asked: "you're a skilled archer. Why do you have a stalker?"
This is my blog! Let me tell you why! (general you. You, the reader. Assuming you don't already know why).
The flip answer is "because I live in Oregon. Stalker lives in Florida. No one is that skilled" but there's also actual a lot of systemic junk that matters in a serious conversation about such things.
This is going to need to start, again, with context, going back to when I was an unjaded, barely cynical little baby K just jumping into the world of advocacy. Back when I didn't think self advocate was patronizing and silencing. Back when I thought if I was smiley and adorable enough, people would suddenly see the humanity in me and in their kids.
Yes, really, this was an era that existed.
So. To understand why I have someone persistently contacting me even though I told him to fuck off, you need to know why he fucked on. Back in the early AOL days, when we were just kids--there's an 14 month age difference or so, and all the safety stuff back in the day was "make sure you aren't actually talking to a creepy adult who preys on kids." It was not "some of the boys you are friends with who are your age will grow up to be scary when you diverge in fundamental views." No one told me that. People to this day actively avoid telling girls that.
Way way back in the day, creepy sad little stalker and I were friends. He is autistic. I am autistic. We were exploring this whole world of autistic community and autism community. But our views started diverging pretty drastically; I grew into a hardline neurodiversity activist. He grew into someone who whines about how autism ruined his life and he wants a cure.
This is mutually incompatible, no? So I started withdrawing contact because I do not need in my life supposed friends who think that people like me are lesser. I don't really need friends who think they are lesser either. I didn't have the terms "spoons" or "emotional labor" then. I did have words for things like "I know you think we're destined to be together even though I don't understand your logic, but no we aren't not even a little" and "leave me alone" and "I'm not having this conversation" and "go away." I started pulling away, saying "leave me alone", at the turn of the century.
In 2005 creepy sad stalker crashed an actual line. While before that it had been a lot of "he makes me uncomfortable", for reasons I will get into later in this post that didn't really matter to anyone. Him showing up at the ASA 2005 conference with the stated goal of getting in my pants did. That is a line that most people will acknowledge is a line. Following me around trying to get me isolated? A line that more people notice.
(not entirely relevant but also not entirely irrelevant is that ASA 2005 was right at the beginning of my span of time spent very critically ill. So he was creeping on a tired, sick, dropping weight very fast K. That's relevant in the nuances, but not the big picture maybe?)
After that it was a big hard nope we cannot at all be even vaguely friendly. I spent an entire conference clinging to safe people because creepy sad stalker was making me feel unsafe. A couple times a year he still sends me an email that's a mix of "I'm sorry but here let me give you excuses and also say things that are meant to sound intimidating".
"You're a skilled archer. Why do you have a stalker?"
I think that about covers the how I picked up a stalker. As for the skilled archer part? I've known how to shoot forever, but in the late 90s and early 2000s that barely registered on "important parts of my identity". So even if my ability to hit things with projectiles was going to be a factor--and it probably wasn't--other things were much more prominent in the list of things that make me, me.
Skilled gymnast? Yes. Fearless advocate? Yep. Funny in the words? Yeah. Made of eyes and Princess Leia buns? Uhhuh. Great with kids? Sure. Weirdly flexible? Actually not so much because I didn't realize what normal was at the time. On the internet, the aspects of you that you find salient are how you are known, and "oh, I did horseback archery and stationary archery for a few summers" weren't ever part of the conversation. I was too busy flying, or telling people that no really your kid is fine, I promise, you better believe I'll babysit, behold, your kid adores me.
...some things never change. A lot of those things, really.
So now the question becomes "why do you still have a stalker?"
There's a lot of answers to that question.
First, because of the distance. Sad creep and I are on different coasts. Police forces have not heard of airplanes apparently. Indeed, their go to suggestion when people are being scary on the internet is "hang up your computer". Not to suggest that the offender should maybe leave people the fuck alone. No one wants to handle it. I have called this guy's parents--he's 30 and a bit--because of how many fucks police don't give. Not like his parents cared either, because he is made of excuses.
Second, let's be real here: there are gender issues (and race issues, though in my case they're largely intertwined--people expect super compliant lady stuff from me because of my race. That is not and has never been me). He sends me whiny pants messages about how his disabilities mean he can't not be a douche and wraps them around "and let me tell you how much I can bench or whatever because I decided to try to do a sport and oh let me say again that I can lift way however much". That's an intimidation tactic. It's also so accepted for men to do that no one cares. They tell me that maybe he's trying to impress me.
Whereas when I post a picture of the destroyed target, I have to be careful to not use one that could be taken as a threat. Men try to impress women, but women who can take care of themselves are threatening and scary, I guess? The natural order of things is that I'm scared of him? Turning it around by actually having skills, and advertising them, is not. If I was a dude, advertising would be fair warning, but since I am not, it's being threatening. Nevermind that he's the one sending me things that sound like intimidation. Not being intimidated is a bigger issue.
And then there's the thing no one wants to talk about:
We're both autistic. Now, people are quick to tell me that he can't be held to any standards at all because he's autistic. That he cannot understand that a very clear "fuck off, never talk to me again, I mean never, let me call your dad to explain it to you what 'never' means" message means exactly that. He has poor social skills, because autism. He's a lonely sad self pitying sack of crap because autism. He has fixated on me because autism. No expectations of decency or fucking right off allowed.
However, I am autistic too. And people expect me to coddle him because I should know what it's like. Because apparently I have magic angel powers or something. Because by not telling him to fuck off when I was 16 somehow I gave him an in to fixate on me until the end of time. Because he can be a creep, but defending myself is kicking a puppy. A puppy with adult skills I do not have, no less. But gender roles dictate that I should nurture him or be gentle or whatever. Then his not understanding gentle (or rude. Or ignoring. Or anything) is still my fault, because autistic women can't win.
So that's why I'm a skilled archer with a stalker. The archery is largely irrelevant except where using it could get me in big, terrible trouble. Society is set up to coddle his wee little feelings, to encourage him to be creepy and scary, particularly at people like me.
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