Sunday 25 October 2009

Fear, Uncertainty And Doubt

Got a bit of a 'blah' moment a few hours ago. Someone on IRC said that she still thinks that I'm AIS, basically that my body is like this because of Androgen Insensitivity Syndrome. For some reason it got stuck inside my head that this might be the case, so to ease my ponders I went to look at the Wikipedia page on it.

Suffice it to say that my condition doesn't match up at all, with neither gradation or phenotype. The fact that I have a female body (including secondary characteristics) together with externally only seemingly normal male genitals is not possible within the AIS pattern as far as I can determine, as it is more of a sliding scale from male to female characteristics. Only thing which seems to match up is the genotype determined so far, being XY, 46.

What I have determined years ago already and basically reconfirmed today is that XX/XY hermaphroditism is still the best match, as it explains the contradictory nature of my body, with both strongly male and female characteristics instead of one strong and the other weak as is much more common with intersexuality conditions. It's a shame no testing was done before I began the hormone therapy on my fertility level (male side), hormone levels and such. Thank you VUMC, I guess. Ah well.

I found myself thinking back to the conversation I had with some Jehova nutcases a few days ago. The discussion itself was very familiar to me as I have talked to such people before in real life and have had and read countless discussions on such topics on the internet. The thing which always me annoys me about fundamentalist types is that they like to twist the truth and selectively filter it to best present their opinion. This time they tried to talk nonsense about evolution, for example, which is pretty much my area of expertise, so they didn't get far on that.

In hindsight I should have gone back to the basics and pointed out that their question they started with of whether a creator couldn't have made this planet and universe is invalid as they fail to define and specify what this 'creator' is or might be. That's always the point which annoys the heck out of me with blind faith-types, how conveniently they can skip over the fundamentals of logic. I hate irrational thought as it is chaotic, and chaos is always destructive.

Logic is an essential part of my way of thinking, which is why I haven't given up figuring out my body yet. My rational side is extremely strong and dominating, so that my emotional side is rarely able to surface except in time of fatigue and extreme stress. I know there is a solution to the logic puzzle that is my body and I will find it, despite the completely chaotic and irrational manner in which people including specialists treat me all the time. Humans are chaotic, irrational beings, prone to flights of fancy whenever their emotions flare up. Short-sighted, they rarely understand or concern themselves with the emotional state of those they should be worried about either through friendship, family or professionally.

I find it to be extremely annoying how I can send a response to an email from Weijmar Schultz in which I will ask a few questions, only to not receive a response for a week. Then when I send a short email as reminder I get a response within two hours. It doesn't make sense and it doesn't make me feel appreciated.

Anyway, having him tell me that he'll soon be able to give me 'most of the answers' I'm looking for is somewhat... unnerving to me. What will I hear? How will it affect my life? Is this the end of my search? Will I finally get an explanation and not another dismissal that anything is out of the ordinary? Can I trust these results? Emotionally I dread whatever I will hear as it'll either make me feel exalted or plummet me into a black mood I may never recover from. Logically I'm just tired of having to wait for irrationally slow and moronic people to catch up with me and deliver the final pieces of the puzzle to settle this. I'll know more in about two weeks or so, as the final test on my genotype will have been carried out.

In other news, a few days ago I resumed 'folding' again, which means that I resumed participation on the Stanford Folding at Home project (F@H for short). See http://folding.stanford.edu/ for more information. I last participated back in 2005 and my, things have changed. I have nearly caught up with the number of points I earned for the processed Work Units (WUs) before, doubling the total. I rejoined my old team, HardOCP, number 33 and some people actually recognized me from back then :)

Folding when I quit was still done only on CPUs, but in the mean time GPUs have joined the fray, so I put my nVidia 8800 GTS 320 to work as well and it is churning out WUs like it's nobody's business. Smooth. Only issue is that it's doing it at 85C core temperature and the fan is getting on my nerves. So to cure that I ordered a GTX260 GPU to replace it after which I will relocate the 8800 GTS to a secondary system which will also be used for folding (CPU and GPU client).

F@H is a scientific project aimed at discovering exactly how proteins fold themselves from a long string of molecules into a complex 3D shape with a specific function. Misfolding of proteins is directly responsible for a number of diseases including Parkinson, Huntington, and many more. Solving this complex puzzle will make life much more pleasant for many. In the process it brings people together in a community where people donate resources to a project both to help it out and to compete among each other to get ahead of the list of contributed work. It's a kind of sport, I guess :)

At any rate I hope that I'll get to hear some answers from the UMCG which I can actually do something with. I hope it'll take me a week at most to recover from it. I also hope that it'll take away this intense feeling of loneliness and fatigue which gets worse each day. I truly pray this is the last batch of test results I'll have to wait for, as I'm really not sure whether I can do this one more time. I probably will, though. I'm such a poor loser that I will probably continue the rest of my life if necessary. I just pray that isn't necessary. Please let this year be the end of all this FUD and let next year truly be a new beginning for me.


Maya

Thursday 22 October 2009

More Updates

Just got the Grazia magazine in the mailbox. It is indeed number 42. What I find sloppy is that the 'Real Life' section on the cover mentions a quote from a certain Monique while this article doesn't appear in the magazine. I find it sloppy that they apparently forgot to change this. The article also got reduced to two pages from three, but it's further fine. I just wish they had fixed the cover. It's embarrassing for them and not so nice for me.

Yesterday I talked by email with a psychology student from Groningen who studies at the university there. She said to be shocked and amazed by the treatment I have received the past years, especially the ignorance I encountered among specialists. She will show the article to her friends and teachers. Today I'll email her a scanned in copy.

As for how I'm doing, not very well. Yesterday I was okay thanks to a sleeping pill which safely guided me through the night, but last night was terrible, with disturbing dreams and constantly waking up, at one point feeling downright terrified. Today I find that I can not concentrate at all on anything, even after a 2-hour nap. Breakfast and lunch made me both feel sick again.

The UMCG apparently doesn't it deem it important enough to reply to my emails once more, so I have no idea when I'll have that next appointment. Perhaps I should just stop caring. They'll only tell me that I'm crazy anyway like everyone before has.

Why can't I just bloody admit already that there is no life to live for me. I'm so stupid.


Maya

Monday 19 October 2009

Long, Long Days

Okay, this past weekend was absolutely crushingly fun and tiring. It kicked off nicely with the movie-and-talking night with the visit from the two friends I mentioned in my previous blog post. We watched a movie I got on the advice of a British friend: A Tale of Two Sisters (http://www.imdb.com/title/tt0365376/). It's a 2003 South-Korean movie, and we all thought it was very interesting. It's psychological horror, and it's one of those movies which don't easily give up the secrets behind what in the world is happening and why. I think I got it, though, as did Pieter who was watching as well.

Both friends arrived here at around 8 PM and stayed until near 1 AM. I thought it was pretty fun. The guy reminded me somewhat of Trevor, which is never a bad impression :) We three spent a few hours just talking about a variety of subjects, including how they found out about me. Apparently they both saw my last appearance on Omroep Flevoland completely by accident while zapping about and kept watching. Being new to Almere and not having many friends there they apparently decided to contact me. Just shows how useful the media can be to me, I guess.

Getting to sleep that night took a while as a branch from a tree outside was scratching against the window and keeping me from sleeping so I had to migrate to the music room. I had to sleep on a quite thin mattress, so with only a few hours to go until I had to get up I somewhat drifted in and out of sleep. Count one for sleep deprivation.

On Saturday Pieter and I went to that retro gaming gathering, the video can be found at http://commodore-gg.hobby.nl/ as well as a collection of photos. See how many times you can see me on them and get a free kiss :p

It was pretty fun. To summarize in short: geeks and nerds galore, and slightly weird people are often the most fun to talk with. At the end of the day I had a sore throat from all the talking I did with dozens of people. I played on a variety of old systems, including Duck Hunt on the NES (first time, nearly perfect score, Zapper gun trigger digs into your finger, ergonomics and the 80s don't mix well), various games on the Commodore 64, and Crazy Taxi on the Dreamcast. I held an Atari Lynx 'handheld' which was big enough to crush small pets with and played a bit of Pong as well.

I helped a girl who was visiting the gathering with her brother to play some Salamander (shoot-'em'-up) on the MSX and we talked a bit afterwards during which I learned that she's a psychology student and when we noticed the film crew who had just arrived I mentioned having been on TV before and I ended up giving her my website's address when she expressed an interest in my story. By the end of the day I was completely crushed. Fun, but very tiring.

That night I took a sleeping pill, which helped a lot in getting a decent amount of sleeping. The offending tree branch was located and sacked.

Sunday was amusement park day and turned out to be somewhat dull, mostly due to the amusement park itself. We went with the usual group of people. As Pieter put it, it's a fun park to dump your children in for the day, but it's not aimed at adults. After a ride in the rollercoaster (kinda fun), and another ride which involved all of us getting somewhat wet, we went to the swimming pool (Tikibad).

I'm still sore with a few bumps on my right shoulder and hip where I got a bit too intimate with some of the slides. It was kind of fun, especially the two rides where you sit on an inner tube and slide down through pitch darkness. Less fun were the parts where I began to hyperventilate for a bit and the part where I collapsed into myself and didn't get out of it until this morning when I soaked Pieter's shirt with tears again.

Perhaps Sunday's trip was a bit too much, I feel so very tired and am having trouble staying happy, and that trip sure didn't help by putting me in line for a lot of confrontations with my own body and with the happiness of others. At any rate I'm glad I can do absolutely nothing but work this week.

I just got an email from a woman via my site's contact form. She claimed that she had just read the article on me in the Grazia. I haven't heard anything about the article getting published already in the Grazia from the journalist, however, so I just sent her an email on it. It would be awesome if it is published already, though :)

Update: the article got published, trying to figure out which number of the Grazia it is in (probably the one currently for sale), but I'll get 3 copies sent to me. I'll scan and translate the article as soon as I get it.


Maya

Thursday 15 October 2009

Nice Things, Not So Nice Things

Some simple things make me just happy, such as the present I gave Pieter for his birthday last week. It was the first time I have ever picked, bought and given someone a present completely on my own, and it seems to have been a good choice. The present in question was a new wireless mouse, to replace Pieter's cranky old one which was part of a Logitech MX3000 desktop set (mouse and keyboard). I picked a Logitech LX6, which turned out to work with the old wireless receiver, making it a very painless upgrade. Pieter is also still happy with it, which I'm glad for. With his old mouse the buttons wouldn't work that well anymore (he's a big, strong guy, you do the math), leading to many expletives getting launched. Since I have this weird thing where I feel instantly guilty or bad whenever someone curses or is unhappy, not having to deal with this anymore makes me a happy kitten too :)

What I'm still on the fence about is the visit from a girl with her boyfriend tomorrow night. She's the one who contacted me by email after seeing my video a while ago and also the one who invited me to that Halloween party. They'll be dropping by after supper to watch a movie together, drink some tea and chat. It's the first time I'll see them both face to face and I have no idea what the experience will be like. There's only one way to find out, I guess.

What makes me absolutely not happy is something like what happened yesterday night. Pieter's dad stayed the night here due to his work, and while the three of us were sitting downstairs Pieter's dad asked to see the news on TV because he was interested if anything had happened yet in the DSB bank case here. When the TV turned on it was still on the last channel we previously watched, only this time it wasn't 'The Nanny' which came on, but some rancid scene from a porn movie or so. I only saw like two seconds of it before Pieter zapped away, but by that time it was already too late.

Many sexuality-related topics are a strong trigger for my PTSD, and porn is one of the worst. I tried to act normal while attempting to fight back the sick feeling and horrible thoughts and images inside of me until Pieter asked whether I was tired and wanted to go to bed. Nodding, I got up and walked upstairs to my room, where I undressed and got into my bed, knowing very well that I wouldn't be sleeping any time soon yet. This was about 11 PM. I hoped that Pieter hadn't forgotten about my sleeping pill and that I wouldn't have to go for the other tactic, which is waiting until I'm completely exhausted and will fall asleep even if I were dangling above a fifty meter abyss.

Minutes creeped by and after silently crying for a while I heard Pieter and his dad come upstairs, discuss the new music room, then listen to some music upstairs in the computer room to finally prepare for bed. Then Pieter went upstairs to his bedroom, the lights all turned off and I knew that he hadn't remembered. Since Pieter's dad doesn't know about my issues I didn't want to get Pieter into trouble by sneaking upstairs to his room to ask for a sleeping pill. I thus proceeded to read in my book until it was 2 AM at which point I barely knew what I was reading anymore and fell into a restless sleep after turning off the light.

I woke up again at around 5 AM and attempted to sleep more, but couldn't manage more than a few short naps. I could feel that the triggering of my PTSD of the previous night hadn't been processed yet. Pieter told me after his dad had left that it would have been fine if I had come up to his room for a sleeping pill, that there would have been nothing odd about it. Perhaps I'm just too concerned at times. I then proceeded by drenching Pieter's shirt with more tears.

Nice is the work on our games. Although it's a lot of work still, and Trevor is stressing out over the level editor for Even Cats Dream (with a HDD crash last week to brighten up his day), with me having to finish the new Nyanko, ECD sites and the webshop in addition to various game resources, I'm nevertheless getting more into the spirit of things. It does provide a nice kind of distraction and it's the only time when I'm not confronted with how much of a freak I am.

Tuesday Pieter did get a response from the Justice department on the policy change, basically stating 'We're working on it', meaning that it'll be introduced for consideration at some point in the future. Also no reference to whether it would also help cases like mine. Great work, guys, really helpful.

I sent the UMCG an email yesterday asking whether they could clarify the 'additional test' bit and perhaps already tell me what I can expect to hear with my upcoming appointment. I haven't received a response yet.

Yesterday I also had my first Blend method treatment. As a whole it's more pleasant than the purely galvanic method, even if it takes longer per hair, it should be more effective in destroying left-over cells, meaning fewer treatments per hair.


Maya

Tuesday 13 October 2009

The Blandness Of It All

Last Sunday when Pieter and I drove back home Pieter asked me how or what I was feeling. I answered "Nothing", which was the truth. Everything these days seems to be overcome with a sense of blandness, with the chaos of the pain and frustration still churning below the surface, but I seem to lack the energy to express it. On one hand it's nice, on the other it also means that I seem to fall into some kind of lethargic state which can last for hours. Anyway, it's time for a summary of what has happened in the nearly two weeks since my last blog post.

I visited my GP yesterday morning and got both types of hormones I'm taking prescribed, Cyproterone and Progynova. Not having to order it online any more and having my health insurance pay for it means that I save about 700 Euro a year. On the flip side, I emailed my insurance company with a question regarding full compensation for the electrolysis hair-removal treatments and from their answer I gathered that I'll only get paid back up till 250 Euro, as full coverage is only available for transsexuals. This means paying about 1,250 Euro a year, or around 2,000 Euro left to pay out of my own pocket until the treatment is finished.

On which note, tomorrow I'm starting with the Blend method at the beauty salon instead of the galvanic electrolysis method. Basically the galvanic method uses direct current (DC), thermolysis alternating current (AC, or RF). Blend combines both, resulting in a more effective treatment (70-90% effective on treated hairs). The formation of heated lye is more destructive to the hair than regular lye, increasing the possibility of completely killing the hair matrix (root) cells. I can't wait to see how it'll work for me. I'm still quite happy with how the treatment is working for me so far.

I felt quite disappointed when I wrote my previous blog post on October 1st about the last communications with the UMCG. I have been telling people how it'll take until December before anything will be known at this rate. Well, I wrote another email to Professor Weijmar Schultz yesterday to ask for confirmation on receiving my previous email. Today I got his response. Essentially the genetics department is performing an additional (no details) test because of that previous email and this should take about another 3 weeks. An appointment will be made soon during which they expect to answer all my questions.

The sensation I felt at reading the 'three weeks' part can be described as 'choking'. It almost made me wish it would still take until December. It's such an incredibly big thing... It truly terrifies me to have to hear what they have to say. Did they find anything? Nothing? Will they just say that they can't find anything genetics-wise which is 'unusual'? Will they say that I do have something odd, like XX/XY pattern? I so hope that they have found at least something which would justify to myself chasing those answers, as I know that 'nothing unusual' is not the answer which will help me explain things. Such an answer would only help me further down into despair, make me further question my own sanity. I'm truly afraid of a negative result.

I tried to register myself yesterday for a house/apartment here in Almere, yet I simply couldn't make myself fill in the first page. I know I have to use my official identity, but for some reason I just can't do it anymore. I don't want to be something I'm not, I don't want to have to muddle through that procedure with the feeling that I'm taking care of it for someone else. I may not entirely feel like 'Ms Posch', but it's a heck of a lot closer to the truth than 'Mr Posch'.

Which reminds me, the government instance last contacted/forwarded to (Justice Department) on the policy change regarding official gender changes still hasn't responded. It's nice to be left in the dark like this. I haven't received that declaration/letter from the UMCG yet either explaining my situation. Not that I would want to renew my driver's license while this retarded dual-identity situations still exists, though.

Health-wise I'm somewhat bordering on the edge. I feel extremely nauseous at least a few times a day, to the point that I fear that I'll throw up in the next second. My appetite is shot, with me skipping meals or just eating very little. Yesterday I had one bowl of muesli for breakfast and no lunch, while I used to have a full-sized breakfast and lunch. I guess it beats responding to stress by gorging on food.

In more positive news, I watched 'Alice' for the second time yesterday. It's a 1988 Czech movie loosely inspired by the Alice in Wonderland story, turning it into a totally surrealistic, sometimes almost horror-ish experience. I first saw it when I was a young child, many years ago, and back then it completely freaked me out. Not that I got nightmares from it, but I did think it was a quite scary experience. The second time I appreciated the movie more, understanding its premise and such much better. It's definitely a movie I would recommend watching, if only because it's so original :)

On Saturday the 17th I'll be going together with Pieter (and his MAME setup) to a retro gaming day in Maarssen, near Utrecht: http://commodore-gg.hobby.nl/. It is called 'From Pong To Playstation', and costs 2 Euro to visit. A lot of old and more recent systems can be seen and quite a few played on.

On Sunday we'll be going with a large group to the Duinrell amusement park in Wassenaar. Initially we were only going for the swimming pool section, Tikibad, but since we have to buy a combined ticket for both the park and the pool we're going to visit the park as well, before we head for the pool. I hope it'll be a fun day.

Finally, I put the BNR radio recording of last month online. I created a kind of slideshow to go along with it using an Avisynth script (my first one). The video can be found in my YouTube channel and on the Media page on my site.


Maya

Thursday 1 October 2009

The Surreality Of Existence

Ah, how subtle changes can occur. One moment I find myself whining about how I'm so terribly lonely and am a complete social misfit, and the next moment I'm planning my costume for a Halloween party on the 31st this month where around thirty people will be attending. This all because one girl here in Almere sent me an email yesterday after seeing my last video on the Omroep Flevoland site. We sent a few emails to and from, then today we chatted on MSN for what must have been hours. Unlike what happens in most cases when someone contacts me this way, it actually clicked between us. We found no lack of subjects to discuss and I'm left with a positive feeling about things. Somewhere in between she mentioned a Halloween party she organizes each year and asked whether I might be interested. I said yes.

I'll be attending the party as a vampire. Yes I know, how terribly exciting and such. The truth, however, is that it's just a great fit for me, as vampire women are supposed to be attractive, very feminine women (check). They're also exceedingly pale (check) and mysterious (check). All I need are the teeth and some other bits and pieces and I'll be a great vampire :) Things to get include shoes, make up (I'm not yet pale enough :P ) and perhaps something to put up my hair. Good thing I have still got a month to take care of things.

I finally got some more clarity on the medical side as well. In an email Weijmar Schultz of the UMCG told me that 1) there is no Oestrogen gel here in the Netherlands (must have been a communication error before...), 2) they won't contact Germany yet until they have some more answers from the genetics test. Since I refuse to use patches, even if other types may have fewer side-effects, also due to the horrible residue they leave on one's skin and the pain it is to put them on properly (had one fall off before), this is not an option. I also see no point in the subdermal option where a capsule is injected underneath the skin for half a year, as this leaves a scar (two scars a year? No thanks) and the last month it's unreliable.

Yes, the oral option (pills) I'm using now means that I'm putting more strain on my liver and the chance on thrombosis is a tad higher (mostly in risk groups), but it's the most practical option which gives me the best quality of life. I would like to try the gel option still, but I would have to order it from elsewhere than the Netherlands, meaning that my insurance wouldn't pay for it. So pills it is.

I'm somewhat disappointed that they aren't going to discuss with Germany yet. To me the most important question is whether or not I have a vagina. What my genetic makeup is is of far less importance to me. It won't affect the rest of my life after all. All I know is that sexually I'm a mess, and that unless I get some answers there soon, my frustration and anger will only get worse. It is the primary reason why I feel like a freak after all. Or why I am a freak.

The two politicians of the PvdA Pieter wrote an email to didn't bother to give a proper response and instead we got redirected to the general point for government information, Postbus 51. They promised to either answer the question on whether the new law will help me too or else give an estimate on how long it'll take in 3 days time. Let's hope I hear something tomorrow.

Yesterday night I had another bad moment involving strong thoughts about suicide. With the strain I can feel each day and which expresses itself in a headache, fatigue and a lack of energy/motivation, I can notice that I'm really at the end of what I can take. Something like that Halloween party is a nice distraction, something for me to focus on instead and allowing me to push away the negative feelings for a short while.

Yet the sad truth is that I'm balancing so precariously on the edge that I can't help but question the wisdom of the UMCG in delaying certain things which could be done in the short to medium term, instead focusing on the long term. Either interpret the MRI images correctly or admit that nobody has a real clue about what can be seen on it and start cutting me open or so.

I just want that one answer...


Maya