Monday 27 April 2009

Happenings

So things didn't turn out that extreme yet, disconnection-wise. Pieter managed to get me to the pool on Sunday, where I had a rather fun time with the Chinese children I mentioned before as well as a nice talk with mostly their mother plus the father a bit too. As this family quite often speaks Chinese among each other and with other Chinese people (though their Dutch is fine), it kind of makes me want to hurry up with learning Mandarin, so that I may converse in this language with them too and understand some subtle hints in things they say which I may not otherwise comprehend.

I didn't do much else on Sunday, though. I slept for two hours, sat in front of my computer a bit, then got a tummy ache which make me decide to go back to bed again. After dozing a bit I woke up some more and felt absolutely terrible. As Pieter wasn't around due to the D&D campaign he was playing with his friends elsewhere in Almere until much later that day, I had no choice but to deal with things myself. This 'dealing with' appeared to mean 'scratching my skin open' primarily, something I managed to prevent from happening more than twice.

By the time Pieter returned home I had fallen into some kind of catatonic state, leaving me unable to respond to anything he said or did. It took a while until I got out of this state, but I kept feeling miserable the rest of the day. I felt almost completely sure that ending my life would be the proper course of action, being that I'm just a faceless freak. I'll look at others who are going through a sucky time, but have lots of friends surrounding them, then I see myself being largely alone and being more of a problem to others than someone who deserves attention. I hate living, almost enough to embrace death.

I didn't sleep very long last night, waking up at 2 AM and half-dozing, half feeling utterly depressed and suicidal until about 8 AM. I didn't expect myself to get up at all today, but I managed to beat my emotional side back into submission and got out of bed. Once I turned on my computer and checked my email, however, I noticed an email message from the girl I had been training with together at the gym. She had gone to the gym on Wednesday, expecting to see me there too based on the email I had sent her that day. Feeling terrible that day I had however decided not to go to the gym and I had my phone turned off, leaving her unable to contact me.

She also told me in the email that she wanted to go to the gym again today, which I agreed to. I must admit feeling happy at receiving her email message, as part of me had expected that contact to just vanish like people have just vanished on me before. Our session at the gym today afternoon was kind of fun too. I must say that it managed to really cheer me up. One thing I'm a tad nervous about, however, is how she'll respond to learning about my 'secret'. In a previous email today I had included a link to my website and thus this blog, which she admitted to having skimmed a bit already. I just hope that things will turn out fine, which I expect them to be, as she appears to be someone who would not judge others based on mere physical attributes.

Other things I did today include taking a shower after the gym (naturally) and experimenting with my hairstyle. I decided to take advantage of the natural curl my hair has, resulting in me now having really pretty ringlets, also known as tube curls ;) After an impending haircut things should look even better. I still need to lose some weight, though, as the bathroom scale was so cruel to point out today :( Yay for the gym, I guess.

Right now I'm not feeling too great. Earlier I decided to clean up my room a bit, redo my administration and other document mess using some more trays I got from Pieter after he was done cleaning up the computer room. I filled up all six new trays with the documents, maps and other things relevant to my medical struggles. It's kind of depressing to sort through this pile of letters, reports and various other documents, seeing the progress or lack thereof, the confusion at the lack of a clear conclusion and all that.

Tomorrow is my next appointment with my GP. She should have new advice on any psychological guidance at the very least. Not having received any updates from Linthorst at the AMC, I think that the worst will have to be assumed, namely that I will have to pay for the chimera test myself and devise some way to get clarity on the MRI images. I truly wish that I could have that test and a proper report on the latter, if necessary accompanied by some more tests. I'm so tired of fighting that I simply can't go on any more, and yet I have to...


Maya

Saturday 25 April 2009

Disconnection To Preserve Sanity...

My previous post resulted in an interesting response, namely that of getting zero positive comments but two absolutely negative and hate-filled comments. As I didn't feel like writing any response, let alone a new blog post for days after those comments, Pieter took it upon himself to put especially 'Dennis' (I'd love to know who this guy really is) back in his place. Dennis even went as far as to accuse Pieter of having been brainwashed by me, as well as state that there are no physical characteristics which would suggest that I might be female, claiming that him reading my blog for a year gave him better knowledge of me than Pieter would, despite him having seen and interacted with me for real for over a year now. Pieter's last response to Dennis' 'brainwashing' comment so far haven't been graced with a new response from Dennis. Below the contents of Pieter's last comment, as I really couldn't have put it better:

"You have read, but you have not understood. Her problems have existed throughout her life, not just the 2 years that she has taken hormones. She has been identified by others as a woman long before she ever decided to wear women's clothing, and her decision to be one stems more from the realization that she is more woman than man in appearance and experience than from a desire to be one.

"The reason the MRI results from both German clinics pleased her were not because they gave her "proof" of being female or because it would help her "become female", but because a chimeric condition would be a valid explanation for her symptoms. She has been seeking answers for over a decade now, and during 4 years of medical examination the only thing close to an explanation came from those two German clinics. Perhaps they were wrong, it's possible, but due to misunderstandings of her intent the Dutch hospitals have focused on the believed desire for her to become female rather than her actual desire to get explanations of how her body functions. As such, they have not run ANY of the tests needed to give her answers; the two tests she took so far were initiated by her, and if needs be she will get the others done on her own as well. There is an answer out there, and she will fight to get it, as IMHO she is entitled to."

If I look at myself, I don't see a woman or a man, but a blank spot, an intelligent entity, a human. Looking only at my body I and others can see that it is more feminine than masculine, this recognition having been started when I was only a few weeks old. To make interactions with the outside world easier I chose to present myself as a female, as I couldn't for the life of me imagine myself with this body acting masculine, let alone that I would feel comfortable in such a role.

I do not desire to become anything at this point, as I wouldn't know why I would want to do so. Basically my entire life so far has been a waiting game, until that moment when I would finally be able to assign an identity to this body and via that define myself. Until that moment I experience this profound disconnect between my rational and emotional (physical) side. Starting years ago and persisting today my role models have been for example characters in Star Trek, like the Vulcans and the android, Data, for being unaffected by emotions, for considering their body to be a secondary consideration, merely a vessel for their real self, their self-awareness and intelligence.

Not that I had things completely under control, but when I admitted to there being an unresolved problem involving my body over four years ago, this represented a shift from the rational to the physical. Unfortunately my emotional side hadn't had much attention since my early childhood, and wasn't ready to cope with the things that were going to come its way during the next years. My basic questions (what am I? What can this body mean to me?) have been twisted and mutilated and then thrown back at me, leaving me unable to defend or to understand what was going wrong, why people wouldn't just understand what I was saying.

This all culminated so far into my last appointment at the VUMC, which for some reason seems to have done more damage than I could have imagined. This week I have seen a more rapid degradation of my emotional defences and abilities to deal with pretty much anything than I had ever held possible. From severe collapses and crying for hours on end in the beginning to a state of continuous collapse, where my emotional side seems to have no defences at all any more and exists only in a state of pain and agony.

A few hours ago I returned from the gym, and I fear that it has been my last time there for a long time. Tomorrow I won't be going to the pool either. I will skip the walks with Pieter and his dogs. I will curb the sites I visit. Today I'm feeling worse than I have ever felt. All my emotional side seems to be concerned with right now is pain and the only way it can see to end it. Rationally there isn't much I can do about it either, but I do recognize that my contacts with others is what destabilizes me, as well as reading words or seeing images which trigger traumas and such deep inside.

Essentially I have decided that if I want to keep my sanity I will have to sever any and all contact with the outside world which may threaten me. This means that I won't be on MSN or other IM services, that my phone will be off, that I'm unlikely to respond to email or other communications. I may add blog posts in this time, but I can't promise anything. How long this will last I can't say. Maybe weeks, maybe months. Maybe I won't recover at all despite this step. All I know is that it's my best and only hope at this point.


Maya

Wednesday 22 April 2009

Trust...

Last Monday I had my appointment at the VUMC with Dr Gijs. This time my mother accompanied me. I would meet up with her at the train station in Amsterdam Zuid. Before things got to that point, though, I suffered one of the worst emotional collapses I have had. Fortunately it happened before Pieter left for his work, as otherwise I might have torn open my throat. Fortunately Pieter managed to stop me. After about an hour of pretty much non-stop crying, I was so tired that I nearly collapsed on the spot. After Pieter put me back to bed and left, I fell asleep and didn't wake up until two hours later, just in time to catch my train.

Once arrived at the VUMC with my mother, Dr Gijs informed us that we'd be joined by Dr De Ronde, the person I had spoken with early last year and who I had requested with Dr Gijs to absolutely not speak with. The following discussion I do not wish to more than summarize as it still leaves a very bad taste in my mouth.

In essence De Ronde doesn't see the need for further tests, meaning no chimera test, no further analysis of the MRI images (what happened to the radiologist who'd detail the VUMC's analysis?), but only the assumption that based on a non-chimera test only (blood chromosomes) and their narrow definition of 'male' I am according to De Ronde a regular male with a regular male development of my body. He did have no explanation for the presence of my secondary female sexual characteristics and essentially just said that he thought that I'm just a male who looks rather feminine. He told me that same old story of there being a lot of different looking males, with some of them carrying rather feminine looks. I felt very offended by this.

My own theory as I described it to De Ronde and Dr Gijs, is that my body is female, has a feminine phenotype, yet the development of male reproductive organs suggests that something more is going on. The presence of XY chromosomes in my blood and the fact that in the womb I was part of a twin both suggest that I'm probably a chimera. Neither Dr Gijs nor De Ronde refuted or commented on this theory, but plain ignored it.

After an hour of arguing like that I still hadn't run out of the room, even though I felt that the situation was hopeless. Dr Gijs offered me a possible treatment at the VUMC, involving accepting the status quo as-is and making up a 'point B' to move towards. I politely told him that I thanked him for the offer, but that I was not in the business of making up things and would not decide myself or by anyone else what would be best for me until I know what this bloody point A (what I am now, how my body is put together) is.

So, in short I'm done with the VUMC again. They have lied to me as before, refused to understand me, refused to carry out any kind of test. Same old, same old. My goal now is to somehow get a chimera test performed, as well as an in-depth analysis of the MRI images (both sets) to finally resolve this stand-off. I have contacted Dr Linthorst of the AMC to inform what the AMC might be able to do for me, else it's off to private clinics again. If I have to pay for everything again, I'll have to somehow get the cash for it. I have no idea yet where to borrow/steal/beg for the money.

Yesterday I discussed my situation with my GP. She understood why I quit with the VUMC. She got contacted by Dr Gijs before I talked with her (via her assistant), and Dr Gijs had expressed his concern about my emotional health (how kind of him...). I explained to my GP that I felt a lot better after quitting at the VUMC, as their erratic behaviour, false promises and hope, plus down-right lies had really taken their toll on me the past months, as my collapse Monday morning showed.

My GP will contact De Meregaard, the center where I previously talked with a psychiatrist, for advice on where I can best receive therapy/guidance with my emotional issues. She deemed it necessary as the VUMC won't be providing such a service to me now. Next Monday I'll have my next appointment with my GP.

Yesterday I started feeling tired again around noon as usual, yet when I went to rest in bed, reading and sleeping, I woke up feeling absolutely beyond just 'tired'. This worsened during the day, until after dinner when I was feeling both emotionally and physically completely drained. I began to develop a severe tummy ache as well, leaving me in agony until it somewhat lessened due to painkillers and I fell asleep.

Today I'm feeling somewhat better, but my appetite still hasn't fully returned. I have no idea what caused yesterday's tiredness and physical symptoms, though it could be a combination of the stress I have experienced and the flu or so. I still feel a bit light-headed, sometimes even dizzy. Time to take it easy, I guess...


Maya

Friday 17 April 2009

Fluctuations

How quickly things can change. Early yesterday when I wrote the blog post I was boasting that I didn't feel too sore yet after the 3 hours at the gym the day before, only to have the stiffness and soreness set in a few hours afterwards. Right now I can feel quite well which muscle groups I used Wednesday. Hopefully I'll have recovered a bit by the time I'm going to the gym today (7 PM as usual). I'll take it easy at any rate :P

Wednesday after the gym I felt quite good, only to have things reverse again the next day, partially due to Pieter reminding me to contact my mother so that she can accompany me Monday to the hospital. I felt unable to do a significant amount of work all Thursday long, spent a few hours during the day in bed watching TV, and generally was a wreck.

Regarding the programs I watched on TV yesterday, on National Geographic Channel there was this interesting documentary on the evolution of birds. Few people seem to realize that modern birds are the only surviving dinosaurs, specifically raptors. Crocodiles are reptiles, not dinosaurs. What I found to be an awe-inducing moment were the big natural disasters occurring during the evolution of raptors into birds, the biggest two wiping out much of the life on the planet and changing the course of evolution. Perhaps it was due to my recent church visit, but I found myself thinking of how much more awesome nature can be than anything humans can come up with, especially religions. Jesus got nothing against an asteroid, half the size of Manhattan, smashing a 160 km crater into the planet and causing mass-extinction. That's Awesome with a capital 'A'.

My mood yesterday slowly worsened until I collapsed emotionally twice last night, the last time right before I was going to bed, while brushing my hair in front of the mirror. Pieter, who had already gone to bed, came down to my room to comfort me. After the first collapse I had already decided to take a sleeping pill, but it didn't kick in before the second collapse. Feeling completely miserable, I was glad I had taken the sleeping pill and after Pieter had tucked me in, I quickly fell asleep, to awake not until 7 hours later, feeling relatively rested.

The reason for the collapses is basically due to the additional stress from the appointment on Monday. To me it symbolizes everything that is wrong with me, with my body. It reinforces that I'm not normal, and never will be. It pains me so much to even think about the whole medical mess that I just want to curl up in a dark room and shut everything out. Just go away... leave me alone. I'm done playing this game. Soon I'll have to start telling people I met at the gym, at the pool, and who knows where else what's going on with me, and I'm so tired of it reminding me that I do not even remotely know what this body I was born with is.

I might as well have been stricken with some kind of horrific injury or defect for the effects it has on my life. Call it hyperbole, but unless you have some kind of serious physical or mental issue, and have seen dozens of hospitals and 'specialists' in trying to resolve it, you have no idea what levels of agony it can cause.

Today I'm feeling relatively stable, but even typing this blog post has already exhausted much of my energy...


Maya

Thursday 16 April 2009

Real Me...

It's been a while since I have posted on my blog. As you can see on my Twitter stream I haven't been completely inactive. There isn't one distinct reason why I stopped posting for a while, the primary reason is definitely a response I got earlier this month on 'Neither Dead Nor Alive...' from Adriana. In it she completely misses every single point there is to get and get all her facts wrong in the process. She claims for example that I would be biologically male (unconfirmed at this point), show no signs of being female (I have secondary feminine characteristics with my skeleton for one) and that the MRI scans showed that I'm completely male (not true). She also claims that I want to be female, something I have never claimed, as I am only occupied with solving the mystery that is my body, even if others can not acknowledge that there's something really odd about it.

To miss the fact that my problem isn't psychological but primarily physical is something I encounter a lot, even with doctors and psychologists. I have strived these past four years to find sympathy, understanding and help with this issue, yet the fact that I encounter so much resistance is what has driven me to this state of desperation, of not seeing a way out of this situation anymore. It's due to this that I look forward with trepidation to Monday, when I have my next appointment at the VUMC. All I expect from it is to experience an increase in frustration, resulting in more desperation and pain.

The past weekend I went to see a movie with Pieter and a couple of his friends on Sunday: Dragonball: Evolution. It's the live-action version of the Dragonball animated series, of which I have seen Dragonball Z partially (boring!) and Dragonball GT completely. I thought that this movie was pretty good. The style of the anime was kept intact, giving the movie an authentic feel to it. I really felt that it was about as close as the makers of the movie could have come to the story of the series in such a short movie (just over an hour). Definitely recommended.

Saturday was a less pleasant experience for me. After dinner I accompanied Pieter to the local church where he would be playing together with a choir in the Easter celebration. I was going to hear him play, as I am absolutely not religious and only care about the music :)

Anyway, one of the speeches during this service was the content of the first part of Genesis and for some reason the 'women and men' and 'procreate' part triggered something nasty deep inside me, leaving me to struggle against the flood of emotions and pain inside. I had to resist just running out of the room, which I barely succeeded in. Pieter did notice my discomfort and kept an eye on my during the proceedings. Afterwards we discussed it a bit. I noted that it just happened, that I can't do anything about it, other than fight it down.

Friday I went into the city to buy clothes and shoes for the gym. I also signed up for a year-long membership at a local gym here, called 'Your Health'. In the end I spent less than estimated on my shopping spree, making me a very happy kitten. Thank you, Jan, for offering me this opportunity :)

Monday I didn't do much at all, Tuesday I was planning to go to the gym for the first time, but felt so terrible all day long for some reason and worse after dinner that I decided to skip that day and try again on Wednesday.

Yesterday was the first day that I went to the gym and also the very first time I went to a gym at all. I wasn't completely sure what to expect and felt quite uncertain about a lot of things. The usual mess surrounding my identity during the registration part at the gym didn't help either. After collapsing emotionally during the day and crying for an hour straight, letting out all the pent up frustration, anger and pain I felt better, though, so I pushed on and went to the gym at 7 PM. With the help of a trainer I got started on some cardio and tummy exercises *pokes her pudgy tummy ;_; * which I finished up with half an hour of cardio, by the end of this 1.5 hour I felt a bit dizzy with a headache.

Resting for a bit, I started talking with a woman who was doing tummy exercises at that moment, with the trainer who had assisted me earlier sitting next to her. This trainer first assumed that the woman and I knew each other already from the casual tone of our conversation. Little does he know about the telepathic powers most women possess ;)

The three of us then moved on to some power exercises, lifting weights, bench presses and all that fun. I actually did quite well for my first time, each time going a bit further than the other woman and even impressing the trainer. Both claimed that I'd be very sore the next day, but so far it isn't so bad, possibly due me going swimming regularly. The woman also asked me whether I used to swim or so, based on my shoulders :P

At any rate in addition to that woman I also met a girl who also was there for the first time and with whom I talked a bit. She went back home quite soon, though, leaving me with the trainer and the woman to finish the exercises, followed up by a cup of tea for me and coffee for the woman. She and I agreed to train together again and decided on next Friday, as the trainer will be there then too.

Ultimately I spent 3 hours at the gym yesterday, whereas one hour is about the recommended limit for a beginner. Afterwards I felt quite good, probably the result of endorphins raging through my bloodstream ;)

Right now I feel a bit torn, with at one side this normal life, reinforced by my experiences yesterday, and at the other side the twisted, freakish nightmare formed by everything that is wrong with my body mixed with liberal doses of ignorance and medical brick walls. I really want to go towards the normal life, end the nightmare, but I also realize that I have to see this nightmare through until the (bitter) end, that I can not give up the future, or my body.

Yesterday's exercise was a definite boost, but doesn't take away the intense feeling of dread and fatalism I experience at the thought of Monday. If I believed in a god, I would be praying for this all to be over soon, one way or the other...


Maya