Parents of XXY’s

Do I talk about parents of XXY’s, no not normally.  They have their own ideas, they are interested primarily in their own child, and what they seem to forget is the same, they are only temporary caregivers.  The XXY himself will take over from them pretty damn quickly,  in just 18 years.

What can we say about most XXY’s?  Nothing, most XXY’s are never diagnosed.  What can we say about XXY’s who have been diagnosed,  lots and lots and lots.  Are they representative of all XXY’s, who knows?

Of the XXY’s who have been diagnosed, parents, we can say your son probably will have educational difficulty to some degree.  Do you want to read it? Do I give a shit?   What about XXYY’s and XXXY’s and XXXXY’s etc….?   Yes they are going to be much more severely affected.   Is your XXY son going to be like them, probably not, most unlikely in fact.

Are all XXY’s male, no they’re not, but I’m not interested in XXY females so if you want to read about them, go somewhere else.   I don’t even know where you can go, that’s how interested I am.  Do a PubMed search or something, do your own studies.

Klinefelters’ syndrome…. no I just can’t talk about XXY without mentioning Klinefelters’ syndrome.  Nobody has ever been born with Klinefelters’ syndrome.  Klinefelters’ syndrome develops sometime after the onset of puberty in every single XXY I’ve read about, and met in person EXCEPT 1.  The medical profession won’t say an XXY with normally sized and functioning testes  (balls)  is just XXY, they will say he has Klinefelters’ syndrome, even though it is a physical impossibility.   Klinefelters’ syndrome is a form of male hypogonadism  that manifests (love that word ‘manifests’) in adolescence, and it is the symptoms of the disease Seminiferous Tubule Dysgenesis.  So parents, your XXY son is probably going to develop Klinefelters’ syndrome eventually, it’s just not guaranteed, and it is a disease.

The one instance I know about, where the XXY man had normally sized and functioning testes,  I read in a reference in a report by Dr Shirley Ratcliffe, and he was detected because of investigations for something else. He lived in Israel and he’s probably dead by now.  But as it happened once, who’s to say it won’t happen again?

Oh that disease thing seems to be a big problem for some parents, some XXY adults too. They just can’t abide the idea that some people are indeed born with diseases.  For some reason they have to believe they or their son is  not sick.  Not all sicknesses are medical in nature, some are genetic, XXY is a genetic disease.    Some diseases are psychiatric in nature, AD/HD is a psychiatric disease and is also endemic in the XXY population.

Australia 1988

A year is a long time, it’s 52 weeks, remember. I must have seen John before 1989 as I went to Australia in 1988, to live, forever. Forever isn’t very long at all. The maximum length of script for Panteston I could get was 6 months, so that’s what I got. I also got a letter of introduction for specialist care.

After I got my Redundancy in 1987, hardly worth the effort I put in to that company, I made Head Boards for Waterbeds. I had my own division I built from me to a staff of 6 I think? I suppose my employer noticed I was the right stuff to train. They were good to me, they were excellent employers. I was just pissed off I lost my job for reasons beyond my control. They relocated to Auckland and my last task was to train my replacement. My employer had 2 factories and they were shutting down their Wellington branch, so they had all the people they needed.

‘sigh.’

1988 was Australia’s Bi-Centenary year, celebrated in September I think? I was on the Gold Coast by then in a bar with my uncles, that’s why I went to Brisbane I had family there. If I’d gone to Sydney I might have survived longer, but it was all going to fall apart anyway. I was ‘gun shy’ by then of all doctors.

I had my letter of introduction from John, I had my 6 month supply of Panteston, but there was an unforeseen problem. My Endocrinologists letter was worthless, fuckit! I saw a Brisbane doctor for a new script at about 7 months. I was never any good at taking them all, on time, so I had a few leftovers after 6 months. The doctor I saw was nice enough, he didn’t examine me, thank god! This was working out just as I had planned it would. Well it was until I tried to get my prescription filled at the chemist. The pharmacist said “What is your authorisation number?” Authorisation number! What authorisation number!!!!!!!!!!!!

I paid that bloody GP good money for that script, and he KNEW, he must have known, it was worthless! I had to see an Australian Endocrinologist to get officially recognised as being entitled to receive my medication. Bugger. I went back to that bloody doctor and explained my problem and he just said “This is not a big concern, I’ll refer you to a local Endocrinologist.”

Yeah right!

I almost got there too. I rallied myself up to get there on time, to the right ward, I almost entered but I knew what was going to happen, and I’d had enough. I can do this without medication. That was my brilliant decision. When you’re hypogonadal you should not make decisions, they’re bound to be bloody dumb!

Australians are great people, if you go there to retire, with your New Zealand Pension, or for a holiday, but to live there you have to have a type of personality that wasn’t my type. I was ok whilst I had enough testosterone, but when I was buying ‘black market’ old stock from creepy characters, in back alley’s of the seedy side of Brisbane, Australians get real racist! They hate New Zealanders who work there. It’s a tangible hatred, you can feel it! I noticed it before my testosterone ran out, but after my irritability level just sky-rocketed! I was lucky I didn’t get arrested and deported! It wasn’t like I was abiding by the laws after all. I was buying steroids illegally! Of course there’s a lot of crap in the media about steroids, and the Australian media, they invent stories.

I ended up selling almost everything I had accumulated. I like to live comfortably, even now. I like ‘mod cons.’ I moved down to Sydney, the people there are much more cosmopolitan, I discovered. Even by other Australians Brisbane is described as a ‘big country town’ jam packed full of narrow minded racists! If you want to find a bigoted society go no further than Brisbane, you’ll love it! Just don’t be black, Aborigine, Kiwi, British, Japanese, Pacific Islander (any island) that’s to live there, visiting’s just fine, they’re more than happy to smile at you whilst they take your money!

I got job at an upholstery factory with all sorts of other immigrants. The employers in Brisbane were good to me too, they paid good money for my services. It’s the everyday people who can’t control their over zealous pride, that would be the best, most favourable, description of them. But in Sydney I was just one of millions of different speaking people. The Australians in Sydney are pretty hard to find, in the areas I lived and worked. New Zealanders sound different to Australians, and they notice it, we do too. They sound ignorant and uneducated to us!

Leaving Brisbane not that great an idea, really. I had my unreliable supply, but in Sydney I had nothing. Initially I lived in ‘Kings Cross’ at the time it was Sydney’s ‘red light district’ it may well still be today? They had a mono-rail passed over the top of it, or quite near it. It was like you could shop for a prostitute (or whatever else you wanted) from the comfort of an air conditioned, glass lined, cabin. That was pretty modern! The ‘room’ I lived in was initially shared with 1 other person, then more and more beds just arrived and by the time I left, and moved to Redfern, I think, there were 8 people living in there, including an American Vietnam Veteran. He was a damn pain in the arse, all he ever did was get drunk, throw up, sleep and piss himself!

If I wanted a room on my own I had to provide ‘services’ to the Manager, and plenty of people did, there was just some ‘work’ I won’t do! This is when I knew I had to get testosterone therapy back. The Manager wouldn’t have found me very helpful, I was completely impotent by then.

It was all my effort just to stay awake for an 8 hour day, and I could never do overtime, and there was plenty on offer. I could have done the same in that factory as I did in Petone, if I had the strength? It didn’t bother me doing the mind numbing slog, to advance. It’s all good stuff for an employer, they can see I’m keen, and they want to pay me more. Then they want more, and I want more, and it’s a snowballing upward effect, usually.

Occasionally I do that and it comes to grief, I’m just being used and getting nothing tangible in return, but that’s life! Males are renowned for taking risks, why would I be any different?

I ended up calling my parents collect, to send me a ticket back to New Zealand.

That was; humiliating.

Is No Body Shameful?

Of course there are ‘shameful’ bodies!

Anybody who insists their chromosomes dictate their sex is deluded. Do you know people with XY sex chromosomes can have female everything external, and do you know that people with XX sex chromosomes can have male everything external?

Actually the XX male persons are said to have Klinefelter’s syndrome as they have seminiferous tubule dysgenesis, and to have that disease they must have testes of course! So they’re obviously male, always were.

So where am I going…..? I get really pissed off with some of these intersex types, like most of them are so fucking lucky, they got diagnosed at birth! Then they bitch and moan about the medical care they received as if it were a bad thing!

Do you know there’s a theory out there in ‘research land’ (that’s a mythical world where people in white coats a hang out and read reams of paper literature) that says that XXY males suffer greatly from insufficient testosterone during puberty, that they’d be better off if they had no puberty at all, like males with Kallmann syndrome, effectively!

True, males with Kallmann syndrome don’t suffer they types of difficulty XXY males suffer, and it is theorised this is because males with Kallmann syndrome their testes fail to produce testosterone, thus saving their brain from psychiatric illness. XXY males on the other hand experience puberty normally, then their testosterone level markedly drops off, sometime after the onset of puberty. Nobody knows exactly when and nobody seems interested in finding out exactly when! They’re males after all, who gives a shit about males sexual & mental health?

Of course there are always exceptions to the rule.

Remember also, psychiatric illness has NOTHING to do with learning ability.

But these intersex types, their only problems are man made! Yeah they discover they’d been lied to all their lives, (that’s something for transsexual people to remember, when you lie about a matter your entire life the people you lie to get hurt!) And intersex types, they feel betrayed, depressed, anxious, angry, that can lead to psychological problems. But they’re so lucky that they had doctors who gave a shit about them, who made sure they had a NORMAL puberty, the very thing all XXY guys don’t have!

Transsexual people usually have a NORMAL puberty too! Be it the wrong sex but hey, normal all the same.

Now you’ve got to read the fine print in “The Interface Project” on YouTube, these intersex types have an introduction video, and what the people say is compelling, but the text in the video is off putting.

I know for a fact they all believe XXY guys are intersex, not that it’s any of their business of course! They wholeheartedly believe all XXY guys have Klinefelter’s syndrome, these intersex types are really good at spouting medical dogma, when it doesn’t apply to them! They want to force XXY boys to develop psychiatric disorders, because they’re receiving information from crackpots who lie about even how they a were diagnosed, about their medical care, the structure of their internal organs, anything to fit into the intersex group they will lie about.

So why do some of the XXY guys want to fit into a group they don’t belong in? Could it be that they’re all homosexual and the support groups of the 1990’s didn’t cater for them, and they had nowhere else to go? Of course, I think it’s pretty well proven sex chromosome numbers do not dictate sexuality, but these homosexual XXY guys really want it to be true for them! If XXY causes homosexuality then all XXY males MUST be homosexual, and we know for a fact that’s not true!

Should an XY female have her internal, non sperm making, testes removed, and if they are removed is that sterilisation? I do know of AIS, 46XY females who were not diagnosed until adulthood, and none have ever elected to keep their non sperm producing, testosterone producing gonads. They’re not being sterilised, they’re being assisted. So I don’t think AIS females diagnosed at birth, or in childhood are being sterilised either, they’re being assisted. They’re given what most XXY guys don’t have a NORMAL life! Now if Eden Atwood wants to have the effects of her testes back, all she need do is have testosterone supplementation, if she wants?

So getting back to XXY boys, should they be forced to have testosterone therapy? I don’t think they are forced to. It’s only the crackpot XXY guys who pretend they’re intersex who claim they are! Oh no I do know of 1 XXY man who was forced to have testosterone therapy when he was a teen by his parents, and as soon as he hit 18 he stopped the therapy, at grave risk to his health! That is exactly what doctors want to avoid, which is exactly why they INSIST it’s the XXY boy HIMSELF who decides if he wants hormone therapy. Of course stupid parents will do stupid things regardless of the best advice!

Of XXY boys in puberty this is what I have NEVER found, they don’t want erections, they don’t want sex, they don’t want to masturbate, they don’t want to ejaculate. When they realise they need testosterone to do all those things, they agree to hormone therapy. It’s only these pretend intersex crackpot XXY adults who want to claim their hormone therapy was a disaster. One famous XXY idiot maintains he was better off being sexually incapable, and wished he’d never started testosterone therapy, but only did so because he was not informed of all the consequences of that therapy. So who as an adult needs to be informed as to the effects of testosterone when as an adult he sought out therapy? Oh he also claims he might die if he stops the therapy he was ‘forced’ to take, which is utter nonsense!

Who the hell’s he trying to kid here? This sort of crap might be really well received by the intersex types, the true intersexers I mean, but it just doesn’t wash with normal bodied people. Normally testosterone is produced by the testes in males at about 50-70mgs per day, when the men are resting. Many men seem to think they wake after resting with an erection as they need to piss, but it’s pure co-incidence. Just ask yourself men, during the day, and you’re awake when you need to pee do you have an erection? Well I’m a man and I don’t, but I do have morning erections, because the testosterone I have is not being used for all the other things it’s needed for and goes straight to my penis, just the same as any other man, when he’s resting.

So what happens if they don’t produce that 50-70mgs per day? Do you really think they still wake up erect? Do they have sexually explicit dreams? Do they think about sex at all? So if an XXY man doesn’t want these terribly manly things what does he have to do? Cut his balls off! Not on your life he doesn’t, all he has to do is stop having the testosterone therapy. Making that personal choice might be quite difficult for some XXY men, when it all goes wrong who can they blame but themselves?

Now if these intersex types want to influence the medical profession to not treat them with hormones, of course they can feel free, they’re adults after all and it’s their health that’s at stake, nobody can be hurt but them. But for them to advocate that NOBODY with a DSD should be treated with hormones because of their not necessarily true accounts, is just plain nonsense. How can they possibly expect to have any influence in the health care of persons not related to them, not even in their circle of friends, based on their dubious accounts?

XXY boys deserve to be diagnosed early, before the onset of puberty, and ought to have the right to go through puberty just like any other males on the planet, and not be forced to develop possible psychiatric illness just because these intersex types have not got a clue what they’re talking about. If they want my continued support they’re going to have to tone down the text in their video. They’re going to have to accept that XXY boys forced to develop Klinefelter’s syndrome will not have a good opinion of their own most ugly body, as it’s counter intuitive for healthy males to look like that! Even their crackpot XXY colleagues don’t have that fat ugly body, BECAUSE they have testosterone therapy!

In my opinion.

Surgery – Prostheses

It’s amazing, some people criticise endlessly. Oh well ‘nothing ventured nothing gained‘ I read somewhere.

epididymis

That’s a nice diagram, at least it’s got a foreskin. That testicle is about right, I think? Not only my teeth are artificial. I don’t know what real balls look like on me, I don’t think I ever had fully mature testes. I don’t think most people know how big they’re supposed to be. If you listen to AC/DC or Jerry Lee Lewis you might get an idea?

If only it was that fast! It took years to get that result, and two main surgeries, one of which was a complete waste of time, effort, and pain! When you’re 12 and you have your balls fiddled with by a doctor you remember it, and when you’re 19 and have them surgically ‘fiddled’ with you not only remember it, you feel it. Having genital surgery is painful, really painful!

This is an extract from a report I publicise:

Testicular implantsThat extract is from Klinefelter’s syndrome: The Need for Early Identification and Treatment

If you want to get a copy of it, read below:

need for early 01

So there you have it, from even before 1991 XXY guys have been getting their lives in order with corrective surgery. I don’t know how SS got on in life after his initial therapy, I hope he did alright?

I also don’t know if his prosthetic testes were satisfactory?

I do know my first set weren’t. They were terrible.

asthenic_v1

When I talk about my diagnosis, I don’t make anything up, I’m not recounting an unusual event, the truth will do. I think that adds credibility to what I say. Others who have unusual accounts offer no evidence.

I have good scrotal and penile development but that doesn’t mean to say everybody who was a doctor I met thought so, nor does it mean those who also thought so agreed there was anything amiss.

The first Junior doctor I saw for my first set of prostheses said “There’s nothing wrong with him.” after examining me. His boss, the Surgeon, on the other hand said “Don’t be so bloody stupid!”

When I was 19 I looked 15, and the Junior doctor didn’t know how old I was, or he thought I was just at the start of puberty, I think? I still looked 15 in my 20’s. Looking too young was a major problem in my life. I quite like getting old, like my peers. It’s taken a long time to catch up.

That’s all about too little testosterone. So all the XXY guys who claim they were given very large doses of testosterone, and stayed looking much younger than what they were, yeah they’re going to have come up with documentation to prove it. Taking an XXY guy at his word, without independent corroboration, is fraught with difficulty.

I can’t seem to locate the letter by John discussing my first set of prostheses with my then G.P. Basically he was saying the results were ‘technically accurate’ but then he didn’t have to wear them! My natural testes were sewn up to the top of my scrotum, and the first set were left to occupy the rest of it. I presume they were anchored in some way?

However, having two pair of balls in a well developed but not exactly big scrotum was difficult. They would regularly ram my testes. I was kicking myself in the balls by doing every day normal things, like sitting down or standing up, or riding my bike, just like it was when I was a kid! Why is it that boys bikes have that badly placed bar right where their balls are when they dismount? What fool designed that!

I’m sure you can imagine the difficulty. SS on the other hand had both his testes removed, before his prostheses were inserted. In New Zealand that’s not how they do it. In New Zealand if you want ‘big balls’ because your natural testes have atrophied, you have to have two pair as the only way you’re going to get the testes removed is with your partner’s consent, and if you don’t have a partner, you’re screwed!

The below letter confirms I did really have 2 pair of balls, just in case you don’t believe me?

orchid

And this letter confirms the absolutely bizarre nature of my appearance.

bizarre1

I’ve been Thinking

For as long as I can recall I’ve been thinking.

Thinking is the thing I do the most of.

I read, you know that? I read. I reckon I read more than people who red novels for entertainment. I read more than scriptwriters, more than actors, more than newspaper reporters, more than politicians, more than librarians.

Trouble it they read something new every day, and I read the same thing over and over again.

Mr Forde taught me that. How to read and understand. With my short term memory, ahhh what short term memory? I don’t think I have one of those! I liken ‘short term memory’ to RAM ‘random access memory’ in a computer. My RAM is defunct! It’s always been defunct. I start a line of text, say a sentence, and by the time I get to the end of it, I’d forgotten what the start was. I do that today too, every day’s the same.

My ROM is pretty good, ‘read only memory.’ in a computer. I can’t rely on my RAM, I have to get all information into ROM as quickly as possible, and there’s only 1 way to do that, read the same thing over and over again.

I read really technical research about Sex Chromosome Aneuploidy.

Most people don’t even know what Aneuploidy means. Not only did I have to work out what it means, but also how to say it. Some medical terms are really complicated. I know why medical researchers and doctors do that, in medicine words have specific meaning, so that anybody reading it, who knows the language, can have an exact understanding of what is being discussed. There is no room for colloquial misunderstandings, they are eliminated by the language.

I know the meanings of words I can’t say. I’ve never heard anybody say them and I have nothing to mimic.

Whenever I think I know how a word is said, then I hear another pronunciation I say it both ways, frequently, in the hope that one of them is right. Such as dys-gen-e-sis or is it dys-gene-sis? I don’t know! I’ve been thinking about that one for a while now, like I say, I’ve been thinking.

I don’t know of any books that teach people to read who have no short term memory. It really doesn’t matter how long a sentence is in that case, I’m going to forget it anyway. So over and over again I go, over and over again. That’s how I learn. It takes ages!

For you to do it you have to be bloody dedicated. I am actually talking to you the reader here, that’s why I used the word ‘you’ as it has specific meaning, which isn’t ‘I!’ I already know I’m dedicated.

So with mathematics my teachers just gave up teaching me too early, they needed to go over and over and over again until I got it, but they didn’t. I had to learn that language that I didn’t understand in the same time as people with a normal short term memory. A language that isn’t discussed on a daily basis by everybody. It wasn’t discussed in my home, well where I lived, put it that way.

And science is a language too, but it uses English, mostly, to teach it’s principles. I’m not supposed to start sentences with ‘and’ it’s bad grammar, apparently? But that’s my style, you’ll just have to get used to it. I’m not supposed to start a sentence with ‘but’ either, for the same reason.

[Take a deep breath now.]

I’ve been thinking, I do a lot of thinking. Thinking is the thing I do the most. Many XXY guys have a non existent short term memory.

Why is that?

Many XXY guys don’t like reading because of their non existent short term memory.

Why is that?

Why is it that as we all have the same additional chromosome that we’re affected by it differently or similarly?

There is not one single aspect of having that additional X that is uniform across everybody who has it, not even infertility! There is actually 1 XXY guy I know of who is naturally fertile, and does not have any hypogonadism disease. As there is 1, there must be more I’m thinking.

It seems to me this extra X isn’t the problem. It has the problem on it. Chromosomes have genes. Most of the additional X is inactivated. For all people with more than 1 X, only 1 X is completely active.

Got any clues?

Allergic to Aspirin

I used to get really powerful Migraine headaches. All I get now is the precursor to them. I’m sure I was under a helluvalot of stress as a child. I’m sure just being alive everyday was an effort. I never knew what was going to happen from one moment to the next, and making plans was more miss than hit.

Our family, our family.. family? Oh whatever, the people I lived with didn’t seem to give more than a second thought to the fact that from time to time I was totally imobilised in pain. I can even remember my brother and sister being so imobilised. They got sick from time to time too. I felt guilty when they were, as if I was the cause, like it was my fault! I just seemed to naturally accept responsibility for everything.

For some mindless reason our parents didn’t believe in pain relief, for children. They certainly did believe in pain relief for themselves. One time our mother spilled boiling fat on her hands, yes it felt like it was my fault as I witnessed it. Oh she was in terrible pain, it was horrific. My dad was just useless, he showed no sympathy whatsoever. It was like he said “What do you think you’re doing you silly woman?” Wow I thought, how heartless! I can recall ambulances going to the house but I can’t recall if it was for that incident of some other?

I know a Taxi stopped outside our house one time and a woman had a baby in it. That was pretty exciting. An Ambulance arrived for her, and her baby. I was having a real close look at those events until my dad dragged me away by my neck, around my collar! It was just getting to the good bit. It was so annoying, I almost had “practical sex education!”

For days later my mum’s hands were a wrapped up in, official from a doctor or nurse bandages, and they had to be changed regularly. And a nurse came, was it Mrs Murray or another nurse, I dunno, so there was pain relief involved. Really good pain relief. I could have done with some of that for my headaches. But even convincing people I had a headache was the hard part. Hands burned with boiling fat is easy to prove. Headaches not so easy, you can’t see a headache!

So I’d go for hours in agony. Literally agony. If you’ve ever had a Migraine Headache you’ll know what I’m talking about. They are absolutely diabolical! My eyes went all wonky. I couldn’t focus, I got split vision. I couldn’t watch TV, any kind of light made them worse. And they’d just arrive out of nowhere! One time I recall we were going to somewhere in Wellington, and my Grandmother was there, my dads mother. I was sitting on her lap on the front seat of the car, no seat belts. My mum had to sit in the back with the other 2 kids, I dunno why it was like that. Grandma was to be obeyed! Maybe that was the wrong impression, I could have had things confused?

And it was real fast Migraine, it was all over and done with in half an hour. At the end of a Migraine I threw up and passed out. So that’s what happened, I felt ill, my vision went, my head ached, pounding pain. Sitting in the front of the car with the sun beating down on me, and I just felt this sensation in my mouth and everything in my stomach came out, in a rush, right on Grandma’s feet. And I didn’t feel quite so well afterwards, when I woke up, and they were asking me “Why didn’t you say something?” I dunno I didn’t have a answer. I didn’t have time to say anything, it was just so quick, any other time I have a Migraine nobody takes any notice anyway, it wasn’t like it was a big fucken deal!

They’d offer me Aspirin that is the correct spelling by the way, Aspirin, weird word. It comes from the bark of a tree, so there, get used to it, so it’s NATURAL pain relief. It’s much better for you NATURAL pain relief, that it doesn’t fucken work is irrelevant! Well it doesn’t work for Migraine put it that way! Every fucken time I got a Migraine all they’d give me was Aspirin, and they’d wait so long to give it to me I’d just throw up, and pass out anyway. By the time I left home, their home that is, I had convinced myself I was allergic to Aspirin. It was that which was causing me to throw up. I had it all worked out.

My doctor said “Don’t be so stupid, If you were allergic to Aspirin with the amount you’ve had you’d be dead by now!” “The problem is you’re using the wrong type of pain relief, Aspirin is for mild pain, not Migraine.” I spent I dunno, days maybe throughout my childhood in agony for no reason, because I had the wrong type of pain relief, and there was a pain relief that was suitable for children.

Fucking stupid parents, MINE!

The Medical Professions are Lying to You

In my post titled “I need Therapy” I included a photograph of where the epididymis was. Then I noticed today that it does not have a complete penis with it. The penis is circumcised, and it’s a drawing! So I wondered what’s going on, that image was from a medical site, and American medical site. So I thought I’d check it out, how many medical sites show the penis in it’s natural state? This is what I found: