Posted by: peterhact | February 3, 2010

I have made a decision….

I have a condition that is pretty well obscure in most people’s consciousness, as it is genetic and to all intents and purposes, I appear “normal”. I apparently am a mutant, with an extra chromosome. I would have preferred an ability to fly, grow blue hair, anything… But instead, I have an extra key in my genome. great.

The treatment is pretty special – I get the chance to be “normal” via Hormone Replacement Therapy, or HRT.

Well, I have had enough of the HRT. I want to go back to how I was, not shaving for months, full head of hair, very little hair on my back and front, and an emotional level that was very normal, I didn’t have anger outbursts, I didn’t have aggressive tendencies, I was pretty placid.

I could find humor in everything, bad or good, my humor was very light, and I existed in a state of heightened consciousness, I had better hearing, sight and a sense of smell / taste that allowed me to eat certain foods that I can’t stand right now. I miss a nice boiled egg, a piece of fish, and they are things i loved before the HRT treatment.

So I have made a decision. I am going off my treatment. My body is mine to control. I can live with the side effects, I did for many years, and I just will exist in a state of pain that is manageable. My brain willjust have to come to terms that there isn’t any testosterone being supplemented. I can meditate and get rid of the headaches, the body aches, and if that doesn’t work, I will just increase my vitamin intake. That always works.

Why am I telling you this? well, there are people out there who think I should keep on getting treated so I am a normal person. I am not normal, I am unique. I want the things that make me different and special. I want to be able to see things from other people’s perspective again, not just my own. I want to show my kids what I have the potential to be, I want them to know that their daddy is unique, and that he believes that they should be unique too, not settle for a society perspective of normal.

I will be changing – I hope it is gradual, but i am well aware that this may not be the case. I want to see where I am in 12-months, evaluate my progress, and change a couple of things if I need to. Nothing major, just stuff that makes me less than I can be.

One thing about this condition – when i was born with it, back in 1971, there was one in 500,000 cases. we were pretty rare. Nowadays, the stats are one in 500. It is on the increase, and it effects males more than females. There is a name for it, it is called Klinefelter’s Syndrome. We are growing in numbers, but there is little or no support network locally for people with this condition. There is no funding for a research program to find non invasive treatment options, or ways to help parents cope if they have a child with the condition. I have the right to make a life choice about my body – I won’t make a choice about whether I live or die, that is just not an option. i will be living for some time. I may end up when I am very old being hunched over as the osteoporosis claims my calcium, but even with the treatment, that is a possibility.

The side effects of the treatment aren’t pleasant, and can include prostate cancer, testicular cancer, hell, pick a groinal cancer, I can get it by being “treated”.

No thanks, I want to experience life as I was created. I am not interested in the horror stories my GP & specialist recount to me. I want to be normal again, not society normal, but Peter normal.

There is a group running out of melbourne, and it has extended its reach to all states, but it is a voluntary group, there aren’t any sponsors, nor are there any magic bullet cures.

I will keep you posted…

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