3:28am June 6, 2015

I notice that talking about cyberbullying has led to an increase in anon hate.

Including anon hate on the very topics the bullying was about.

Someone trying to silence me? Doesn’t want me talking about cyberbullying?

Too fucking bad. I’ll talk about what I want. You think I’ve never been bullied before? Think I can’t handle jut? To bad.

I get my strength from somewhere inexhaustible. Somewhere you bullies can’t even imagine. When you do think of it, it terrifies you, though you’d never admit it. Because it terrifies anyone who is actively being evil. And bullying is as evil as it gets.

Speaking of things bullies can’t imagine. They think they’re destroying mine. They delight in that thought. Always have. But they can’t. They can’t even see me. They don’t know who I am. If they did, they’d never dare bully me or anyone else. Because who we are, for real, is something so powerful they can’t imagine it from inside their world of hate.

The only people they destroy are themselves. When they bully they are cutting themselves off from everything that matters, including love. Cutting themselves kid from love has devastating consequences. Even when they drive people to suicide, they are not destroying that person as thoroughly as they are destroying themselves by being bullies.

I have the power in this situation and they hate me for it. I had the power to yell them if they give up bullying and apologize fyi their current and former victims and make a commitment never to bully again, they will be turning their hate into love. And changing their self destructive bullying behavior. But few will do out sincerely. I know a bully who apologises just to fuck with his victims, that’s not what I mean obviously.

Cyberbullying won’t stop me discussing cyberbullying.

33 notes

2:59am June 6, 2015

I still remember getting diagnosed with adrenal insufficiency.

My doctor was extremely cautious about interpreting the initial cortisol results, which said there was not enough cortisol to measure. He sat me down, got very serious, and told me I might have this thing called adrenal insufficiency which would be a very serious problem if I did. But first he would have to replicate the test results, then do further testing.

He told me if I went on steroids, we could expect minor improvements in several areas. He asked a lot of random seeming questions, like when was my last period (age 28). And he sent me off for further testing which only confirmed that not only did I have it but it was pretty severe.

The steroids got me out of bed and able to exercise for the first time in years. Understand these are the Josie if the steroids athletes use. This mind can actually cause lots of muscle mass. But when they replace a near total lack of cortisol they can get rid of exercise intolerance,.

Exercise intolerance is when your body responds to even minor everyday exercise with symptoms like going limp, nausea, vomiting, shaking, temperature changes, etc. That is gone now. Within weeks I was doing fifty jumping Jack’s (but injured myself due to lacking the muscles to back up my loose joints) and climbing eleven flights of stairs. Prior to this I could not jump even with a grab bar and could not climb one flight of stairs.

I haven’t used wheelchair in a year or so. I’d gotten a manual one not dreaming that even that would be mostly unnecessary. Even with bruised ribs I’ve been walking long distances.

I know this is still serious because they insist on me carrying emergency steroids in injectable form, wearing a medical bracelet, and always informing EMTs I have adrenal insufficiency no matter why I called them. And they said I’ll be on steroids the test of my life. But thanks to my GO and my endocrinologist, the rest of my life could mean 40 to 60 more years when we were expecting more like single digits, low single digits, before this.

And yes I’ve actually posted the test results before.

I still have trouble believing it went from “you may have something really serious but likely don’t” to completely changing my life. I used to wake yup at the times of day cortisol is the lowest, so limp my neck hurt from holding into my floppy head, unable to move my arms far enough to call for help and unable to stay awake, but waking up again and again totally limp, until it passed within hours. That went away on steroids. But I’m told it meant my life was in immediate danger at the time. I’m glad it’s gone.

But the adrenal insufficiency?. Very real. No question even among the doctors who hate me the most. They can’t argue with test results any more than the myasthenia anymore. My GP meanwhile is so excited that he is trying to fix everything now.

12 notes

4:59pm June 5, 2015

Question about adolescence

withasmoothroundstone:

How do you personally feel it fits in with childhood and adulthood? I know this is a very culture-bound concept to begin with. Here’s my take on it. You don’t have to agree. I’m curious both how you see it in the abstract and as applied to your life. Also when do you think it begins and ends? Do you think of adolescents as children, adults, both, neither…? All these questions both for you personally and for your view of people in general, our you can just pick one or the other and pick which questions to answer.

I’ll answer on my own in a reblog.

I see adolescence as something that is different for different people.  For some people it is more childhood, for some it is more adulthood, for others it is more in between.

I started thinking about this when an asshole told me I was lying when I said I met a friend in childhood, because “12 isn’t childhood 12 is adolescence”.  First off, I beg to differ that 12 is always adolescence.  But second off, I still consider myself a child-adolescent up until the age of 19 or so, at which point I became an adult-adolescent somewhere in there.

I think adolescence ends in your mid-twenties, and when it starts varies a good deal based on the person.  For me I’d have it start around 13, although my period started age 11.  I just still see myself as pure child up until 13, at which point it’s child-adolescent up until very late in adolescence.

I know other people who by the age of 14 or so are somewhere between just adolescent, and adult-adolescent, but that just wasn’t me.

11 notes

1:12am June 4, 2015

(Leary and Donnellan)

[Marked difficulties in: STARTING, STOPPING, EXECUTING (speed, intensity, rhythm timing, direction, duration), CONTINUING, COMBINING, SWITCHING } { May impede:  POSTURES, ACTIONS, SPEECH, THOUGHTS, PERCEPTIONS, EMOTIONS, MEMORIES.] 

Fastest way ever to convey the mechanics of autism to someone who is totally new to it and needs something fast and easy.

304 notes

12:58am June 4, 2015

Predictably, I got anon hate from my posts about cyberbullying, why should this be surprising?

Telling me I am not autistic, have no medical problems, and should “get help”.

Funny, I got help a long time ago. I was put into the system and assigned a doctor at random who took one look at me and saw autism. He told my mother after taking a developmental history that I was autistic and an idiot savant. I was later examined by the regional center system in California, the SSI system, and the Vermont Developmental disability system, alkyl found me to be autistic/DD. And those are systems that deny as many autistic people as they can get away with. I have watched it happen to both children and adults but especially adults with no childhood diagnosis. My childhood diagnosis saved me.

The team of psychiatrists and psychologists and neurologists who diagnosed autism knew me throughout my entire teenage years, and one psychiatrist into adulthood.

I sought help for medical problems as well. I had more trouble with this as some of my diseases were rare and autistic people present differently than nonautistic people in Medical settings. We also face more medical discrimination (which anon hater perpetuated by saying I fake things for attention) than either nondisabled people or nondisabled autistic people. I know because I co-wrote a study on that topic which has made it into peer reviewed journals.

So it took awhile. But I now have more concrete documentation of the reality of my physical illnesses and disabilities than most online chronically ill people are able to say they have.

I have bronchiectasis. Diagnosed by high resolution CT scan.

I have severe secondary adrenal insufficiency. Diagnosed by repeated blood levels of cortisol and ACTH (finding not enough to measure of either, at a time when I was near death) and an ACTH stimulation test.

I have either myasthenia gravis, hereditary myasthenia, or hereditary myasthenia gravis. Diagnosed by a single fiber EMG. My mom has it too diagnosed the same way after I was diagnosed. We were both also tentatively diagnosed by response to Mestinon before our battery of testing was complete.

Early onset gallbladder disease and post cholecystectomy syndrome, diagnosed by ultrasound and surgery. It had gotten so bad because of years of doctors blowing me off that the gallbladder was looking dead by the time the surgeon took it out. He was angry.

I have autistic catatonia (which accounts for loss of most speech among other things). The symptoms matched exactly what my doctor had seen my whole adolescence. All he had to do was read the Wing and Shah (2000) paper and I was diagnosed in a heartbeat it was so obvious. I couldn’t possibly have been faking it because the one paper out when I first showed signs was unavailable to me and would not have resembled me as it was a single case study of a very different sort of presentation. The 2000 study was about lots of people and provided general criteria that I more than fit.

I have gastroparesis diagnosed by gastric emptying study. You swallow radioactive eggs and they track how fast they travel through your stomach.

I have TMJ dysfunction tied to a jaw deformity found in a panoramic scan and a hypermobility syndrome diagnosed by joints bending in ways that are impossible to fake. People who are not hypermobile can’t put a thumb parallel to their forearm or a foot behind their head.

i have a straight neck as found in xrays and cat scans, it lacks normal curvature.

I have exotropia. They look at the position of your eyes.

That’s just a sampling.

Not only that but my father was and brother is autistic so why would I be likely not to be?

Anyway I have ample proof of all of these things. They don’t give out power chairs, communicating devices, hospital beds, Hoyer lifts, feeding tubes, oxygen machines, or much of my other adaptive equipment (some of which I don’t need anymore due to treatment of my belt diagnosed conditions) to people who don’t need them. Hell, some people who do need them have a hard time getting them. So I had to have a lot of proof to get these things.

I have more proof of my autism diagnosis than many autistic people in the autistic community whose diagnosis is never equated by people like this anon.

I have far more proof through objective medical tests of my medical conditions, than most chronically ill people I meet online. They may occasionally get questioned but few of them are singled out for cyberbullying campaigns with the main target takeaway message being that they have a mental illness that makes them fake their condition.

There are people running around exactly like me who do not get cyberbullied and shunned and treated like shit. Even when they directly point out to the bullies that they are just like me yet the bullies are not targeting them.

The reason the bullies do not target most people just like me? They are not, as they claim, about exposing the truth. If they were, Anne for instance would be as heavily targeted as I am and Shi would many of my online friends. Because all of us have the traits that are signaled out on me for picking on relentlessly.

The reason?. This is not about exposing the “truth” about me out people like me. It is a personal vendetta targeted at me and only me. The reasons each person has for bullying me are different but they are united in hating me. They find me an easy target because certain of my traits make it easy to play on people’s prejudices. They picked those ableist prejudices to play on because they know ableism is utterly unexamined in the minds our most people (most people have never heard of ableism). It’s easy to paint me as fake because everyone likes to look for fake disabled people due to deeply rooted disability, racial, and class prejudices intertwined. So they are targeting me not because I am truly a fake disabled person. Even they know I’m real. Some of them used to admit I was real, back when calling me disabled was a way to call me broken, and therefore another acceptable bullying technique. Some of them even urged me to act out things I didn’t have then blamed me for “faking” them later.

So make no mistake: When you read bullshit about me not being disabled, you are not reading people determined to find the truth about me. You are reading people who wanted to attack me – and only me– as hard as they could. Accusing me of faking my disabilities is the easiest way to do it. That’s how cyberbullying works. The surface level concern trolling bullshit is just bullshit designed to rope bystanders in and make them take the side of the bullies, making their work easier.

I posted many of my medical records online once. They contained both proof of my initial diagnosis of atypical autism (just autism really but PDDNOS in the nineties was used in many people who like me fit full criteria, you can read about it in Unstrange Minds – it was switched to autism by the same doctor after the danger of long term institutionalization had passed). And also evidence that my current cyberbullies, some of them anyway, were known to my psychiatrist to encourage me to act out pathologies I didn’t have for their own amusement and that I should avoid them at all costs. A far cry from their claim of being super close friends who were not at all involved inn making me do those things.)

It helped not at all. In fact it just gave them more personal info about me. I suggest anyone considering doing their records online reconsider. It won’t make bullies Stup bullying you because they don’t want the truth. They want to hurt you. And they can get more info out off those records than you might imagine. Then they can hurt you worse. The only records I’ve posted recently are screenshots of my adrenal lab test results, because they contain no identifying information and are just a bunch of numbers.

Anyway I am sick of this. I am sick of being singled out while people with far less proof than me are accepted instantly. I don’t want them singled out either but it rankles to see these bullies accepting the reality of people who have no proof at all while all my proof means nothing. They even have accepted some of the few people I have secretly doubted. No I won’t say who. That would be gossiping and my doubts are best kept to myself. They serve no purpose except in my personal relations and how I choose to be wary at times.

But this anon hater is not after the truth about me. They just want to bully and hurt me and calling me a fake is, as they see it, the easiest way to do so. They say I’m not autistic and have no medical conditions. I was diagnosed with autism when I barely heard of it. There may be no objective tests for autism but I was given tests in which scored in very typical patterns for an autie. But Medical conditions?. Objective testing galore, most of which can’t be faked, and I “passed” tests for practically all of my diagnoses. Very objective unbiased tests. Shi claiming I don’t have Medical conditions it’s laughable to anyone who’s seen my medical records.

Which, by the way, fact checkers insist upon. If they hadn’t seen my test results they might not have believe me, because of my stalkers. Seeing the test results, as well as objective proof stalkers were lying about really basic information, meant I’ve never been denounced as a fraud by the media. I fact CNN’s Sanjay Gupta addressed this manufactured controversy and strongly endorsed my diagnosis. They required tons of proof including interviews with people who knew me in childhood and childhood records. They could have easily denounced me if they had any sense I wasn’t real. They didn’t. They said I may be atypical (never claimed otherwise) but I’m definitely autistic.

All that and some people still believe cyberbullies over objective testing. If that’s you, leave me alone until you’re willing to become a decent human being. Because all this stuff is hate and you are hateful if you get mired in it and act on it by approaching me about it.

15 notes

3:35am May 17, 2015

Random memory of my father

We got a ferret at one point. He refused to see her as a pet, referring to her instead as “the varmit ”.

Speaking of which, I read in a book by a so called autism expert that there’s no such thing as a kid who has a speech delay and spontaneously starts talking in sentences one day. But I know someone whose family member did exactly that. At a family reunion, he got pissed at his brother about something, and said “You ain’t nothin’ but a flea bitten varmit!” Which was memorable enough to make it into the commemorative t shirt that year. Best first words EVER.

(I wish my family reunions were that interesting. Mostly I spent my time trying to get away from distant cousins who chased me around as a game. And given these were birthday parties for my great grandma, who had seven kids and half a zillion descendants, that was a lot of distant cousins.)

33 notes

1:06am May 11, 2015

Yuck

One word: pollen

Conversations with staff mostly revolve around what allergy meds we take and how effective they are. I take Benadryl and it’s still one of the best for me. The drowsiness wears off for me after awhile of use. I figure if this is what they give me for anaphylaxis it ought to be able to kick ass, against hay fever and car dander. I really need to get my air purifier up and running as well.

6 notes