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

6 comments:

Dennis said...

Why don't you just accept the fact that your a guy and move on with your life!
Oh I know why! because you don't WANT TO!
You just keep on telling yourself your something special and that your body is weird and that you are a girl or at least look like one a bit.
What the *bleep* do you expect to hear from those docters? What do you want to hear?
They hace done almost every test thinkable and still you won't beleive it.
Ignorance is bliss but this much ignorance is just utterly stupid!

I think the only reason you don't want to except the reality is because you like all the attention!

Stop whining! start living!

toon said...

Why keep on nagging about it?

The information is already out and open on the table.

Take it like a man.

Pieter said...

I'm surprised by the callousness and the uncaring tone of the two posters before me, and how they manage to completely miss the point of this blog. Maya is not out to prove that she is female nor to become one (although that may be the result when all is said and done).

She is stuck in a body that may be male within the strict medical definition, but does not function properly as a male body (which you would know if you actually read this blog), and has many female characteristics like breast growth, no adams apple, inability to ejaculate, etc. such that in general she is recognized as a female by practically everyone she meets. She is looking for answers on what has caused that (which may be chimera or mosaic considering her birth record (she was supposed to be part of a twin)), and there are many tests that could be done to determine these causes. The doctors are just so busy trying to help her become female that they fail to see that that is not the reason why she's there.

You try and imagine the problems you get when you have to identify yourself, and the gender on your passport does not match that of the expectations of the officer in front of you. Try explaining it to a potential life partner if you don't have any answers on why your body works as it does.

Please read the blog before posting such uncaring things. Maya has enough emotional problems without someone who does not know her adding to the problem.

Dennis said...
This comment has been removed by the author.
Dennis said...

She's got you brainwashed aswell.
I followed this blog for about a year now so don't give me all that about not reading this blog.

Offcourse eveyone she meets thinks she's a girl. Or at least look like one. Because she dresses like one! not because she IS one!

She looks male, her voice is male, her genitals are male, her medical definition is male, she has small breasts just because of the hormones, she's got facial hair, and she doesn't have any female genitals!

How much more male can you be?
There is absolutly no clue whatsoever that she's female! The fact alone that you are taking female hormones can explain the inopperatability to ejaculate and the withdrawn adams apple. (There are actually a lot of male persons where you cannot see of feel an adams apple)

So why doesn't she just except the fact that she's a male.
And all the difficulties you are adressing that she has to explain everytime that she isn't a female at the airport and such is just because of the fact that she dresses like one! and tries to act like one! no more, no less!

The first step is to except the fact that you ARE a male.
The second step is to find out why some things don't work the way they should.
But if you keep nagging about beeing female and focussing on the wrong things, and trying to prove everyone wrong, you will never get your awnser!

Pieter said...

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.