The past days I've been gradually restoring some but not all of my online contacts. I notice that it's relatively easy to push myself too far, resulting in an intense desire to withdraw and break off all and any contact.
I was supposed to receive a phone call from the Erasmus MC last Wednesday, but didn't. When I called the hospital yesterday they said that I'd be called today, which they did. I didn't get the doctor I had spoken to before, though. She's moving to another clinic, so I doubt I'll see her again. I explained my situation to the doctor who had called me and she told me to make an appointment with any doctor in that clinic relevant to my situation who I could then give the CD with MRI images to, which I did.
Next week Wednesday I've got an appointment with a Dr. Schipper. I'm relatively happy that I can see someone that soon. I hope that I can find someone to go with me to the hospital, though, for mental support. Pieter can't go with me this time due to his work and frankly I can't think of anyone else who I'd ask, but offers are welcome :)
If things go well, I should know with around 3 weeks from now what they've seen on the MRI images. If they see what Germany saw, then things should become interesting. Else...
At this moment I'm also buried underneath a huge pile of work, mostly paid. I've got a deadline this week which I'm struggling to make. This week I've wasted a lot of time being nervous, especially Wednesday, when I even collapsed completely when that phone call didn't come.
Ah well, back to work....
Maya
Friday, 27 June 2008
Saturday, 21 June 2008
I'll Leave If You Don't Want Me To Stay...
Yesterday I finally received the CD with MRI images. No MRI report from the second clinic, though, as in that case they'd have required me to pay for a full scan (hundreds of Euros). I can clearly see that this is the CD they used in Duisburg as it's been opened. Looking at the images on the CD it's clear that these are different images than on the first CD. On the first CD I could even see fat deposits near the tummy area, something which I don't have. Together with this letter I got two more from the first German clinic, two (identical) bills for the CD. I sent Privatescan an email to inquire about this, as I didn't realize I had to pay for it since they sent me the wrong CD to begin with.
Also received with these letters was one from the VUMC's complaint commission. In it they argued that what I propose for my physical configuration (both a penis and vagina) is impossible and is not found in the medical literature. Because the CD with MRI images I gave them (with the wrong images, naturally) didn't show the presence of female organs, they reject my complaint.
In it they do point out that the absence of a prostate can be clarified by atrophication. With me taking hormones, it is shrinking and becoming less dense. This would explain why on the ultrasound I had a few years ago they did see a prostate and now they don't.
So I'll get nothing back for the 2.5 years I've wasted fighting against psychologists. In their eyes I'm just a poor kid suffering from gender dysmorphia, who can not accept that he is subject to this and instead has conjured up ideas of being intersexual. I can honestly say that if next Wednesday's conversation with the doctor from the Erasmus MC doesn't produce any results, I'm just about ready to give up.
Here I am again... defending myself against what I see as injustice. No specialist has ever interested him or herself enough to actually look at me and perform some tests which matter. It was just me gathering evidence through whatever means I saw available to slowly assemble a likely answer to why my body is so odd. The frustration over the lack of recognition of this fact by medical specialists is producing an enormous amount of stress for me, and is the prime reason why I'm suffering from depressions and suicidal moods.
Two days ago a Dutch (female) friend I know via IRC suddenly started yelling at me and treating me like dirt. This was enough to decide to abandon online interactions as well. All I've got now is my work which is only for myself and this last attempt at getting my IS condition recognized.
In the end I'm alone... abandoned and undefined... yet another meaningless existence. Too much pain to keep living...
Maya
Also received with these letters was one from the VUMC's complaint commission. In it they argued that what I propose for my physical configuration (both a penis and vagina) is impossible and is not found in the medical literature. Because the CD with MRI images I gave them (with the wrong images, naturally) didn't show the presence of female organs, they reject my complaint.
In it they do point out that the absence of a prostate can be clarified by atrophication. With me taking hormones, it is shrinking and becoming less dense. This would explain why on the ultrasound I had a few years ago they did see a prostate and now they don't.
So I'll get nothing back for the 2.5 years I've wasted fighting against psychologists. In their eyes I'm just a poor kid suffering from gender dysmorphia, who can not accept that he is subject to this and instead has conjured up ideas of being intersexual. I can honestly say that if next Wednesday's conversation with the doctor from the Erasmus MC doesn't produce any results, I'm just about ready to give up.
Here I am again... defending myself against what I see as injustice. No specialist has ever interested him or herself enough to actually look at me and perform some tests which matter. It was just me gathering evidence through whatever means I saw available to slowly assemble a likely answer to why my body is so odd. The frustration over the lack of recognition of this fact by medical specialists is producing an enormous amount of stress for me, and is the prime reason why I'm suffering from depressions and suicidal moods.
Two days ago a Dutch (female) friend I know via IRC suddenly started yelling at me and treating me like dirt. This was enough to decide to abandon online interactions as well. All I've got now is my work which is only for myself and this last attempt at getting my IS condition recognized.
In the end I'm alone... abandoned and undefined... yet another meaningless existence. Too much pain to keep living...
Maya
Thursday, 19 June 2008
Welcome, Weirdness~
I got up at around 6 AM this morning, said goodbye to Pieter as he left for The Hague, where he had a talk with some politicians regarding copyright (he's speech person for a large open source movement here in The Netherlands). After that I did some work on this Open Source-related website until around 10 AM when I went back to bed and had one of the weirdest dreams ever.
In it pretty much every single trauma and anything else I find uncomfortable was represented. First there were relationships, with couples moving around inside this rather large house, which induced a severe feeling of distrust, jealousy and other negative feelings. I didn't seem to be really present, other than being a spectator, though it felt as though I did have a physical presence in the dream.
At one point I was sitting on a bed or couch with a few people, including a girl who was just like me and only had her upper body covered up. When someone passed by she covered up her genitals, and after the guy had left, she said something like "Got to keep it hidden from some to appear normal.".
During other scenes in the dream there was this weird 'porn' movie playing on a screen in a bedroom in which I was present together with a few others. I can't recall many details from that part... but it was a quite surreal scene. Definitely uncomfortable.
The dream ended with me having eaten some fruit or so and having to discard left-overs in the kitchen of the house, but being unable to find a waste basket, resulting in me searching over and over again while there were two people there as well. It made me feel embarrassed.
Waking up, I gradually got back to work again, until I got interrupted by a phone call. It was from the woman who lives at my old place in Rijssen now. She had received my letter and thus my phone number. She informed me that she had already called Privatescan and had received my address from them as well as sent the mail to me. I felt rather happy at this news.
I can definitely feel that I'm changing. Ever since I put in this imaginary divide, separating people like them (people who put their basic urges over intelligence) from people like me, I have been able to discard many of the things which used to bother me and really focus on my work. It's as though I have discarded a big part of me, a big, troubled part. Together with it I have seemingly given up on relations, even friendship and especially sexuality. They're things which belong to 'them' and not me. I intend to keep this up until I have certainty about the surgery, at which point I may lower this defense somewhat.
Maya
In it pretty much every single trauma and anything else I find uncomfortable was represented. First there were relationships, with couples moving around inside this rather large house, which induced a severe feeling of distrust, jealousy and other negative feelings. I didn't seem to be really present, other than being a spectator, though it felt as though I did have a physical presence in the dream.
At one point I was sitting on a bed or couch with a few people, including a girl who was just like me and only had her upper body covered up. When someone passed by she covered up her genitals, and after the guy had left, she said something like "Got to keep it hidden from some to appear normal.".
During other scenes in the dream there was this weird 'porn' movie playing on a screen in a bedroom in which I was present together with a few others. I can't recall many details from that part... but it was a quite surreal scene. Definitely uncomfortable.
The dream ended with me having eaten some fruit or so and having to discard left-overs in the kitchen of the house, but being unable to find a waste basket, resulting in me searching over and over again while there were two people there as well. It made me feel embarrassed.
Waking up, I gradually got back to work again, until I got interrupted by a phone call. It was from the woman who lives at my old place in Rijssen now. She had received my letter and thus my phone number. She informed me that she had already called Privatescan and had received my address from them as well as sent the mail to me. I felt rather happy at this news.
I can definitely feel that I'm changing. Ever since I put in this imaginary divide, separating people like them (people who put their basic urges over intelligence) from people like me, I have been able to discard many of the things which used to bother me and really focus on my work. It's as though I have discarded a big part of me, a big, troubled part. Together with it I have seemingly given up on relations, even friendship and especially sexuality. They're things which belong to 'them' and not me. I intend to keep this up until I have certainty about the surgery, at which point I may lower this defense somewhat.
Maya
Tuesday, 17 June 2008
The Waiting Game
This morning and afternoon were a tad too exciting for me. First there was the excitement over Privatescan informing me that they had mailed me the CD with MRI images as well as the MRI report. To my old address. I happen to know the people who live there now, fortunately, and they know me, so I wrote them a letter informing them that they should send any mail addressed to me to my new address.
Now I called my mother today as well, and she told me that if those people were to send mail to her old address (since she's now staying in France), it'd end up at my aunt's place. Hopefully I'll get this thing settled this week. Privatescan can't help me any further according to them, so if I don't get this package I'm screwed.
The thing is that I made an appointment with the same physician as before at the Erasmus MC. She'll call me next week Wednesday during which talk we'll discuss how to proceed. If they're still willing to help me, of course, seeing as how I got kicked out before. God, I'd like some certainty here...
Today I've actually managed to work quite a bit. The past days I've spent largely on messing around with old computers (a friend gave some old PII, PIII and P4 systems which I intend to use for a cluster for AI research). I've also been programming a number of websites, one the community site (promised to have it done like a month ago now :P ) and another one is a project site for a project I've started based on ReactOS, an Open Source Windows clone. I'll update you guys as soon as I've got this site up. And the community site, of course.
I'm going to bed now seeing as I've managed to go to bed past midnight the past days which hasn't been a good thing for me. So yeah, good night~
Maya
Now I called my mother today as well, and she told me that if those people were to send mail to her old address (since she's now staying in France), it'd end up at my aunt's place. Hopefully I'll get this thing settled this week. Privatescan can't help me any further according to them, so if I don't get this package I'm screwed.
The thing is that I made an appointment with the same physician as before at the Erasmus MC. She'll call me next week Wednesday during which talk we'll discuss how to proceed. If they're still willing to help me, of course, seeing as how I got kicked out before. God, I'd like some certainty here...
Today I've actually managed to work quite a bit. The past days I've spent largely on messing around with old computers (a friend gave some old PII, PIII and P4 systems which I intend to use for a cluster for AI research). I've also been programming a number of websites, one the community site (promised to have it done like a month ago now :P ) and another one is a project site for a project I've started based on ReactOS, an Open Source Windows clone. I'll update you guys as soon as I've got this site up. And the community site, of course.
I'm going to bed now seeing as I've managed to go to bed past midnight the past days which hasn't been a good thing for me. So yeah, good night~
Maya
Saturday, 14 June 2008
Whatever...
Yesterday I first went to my appointment with my physician, who I informed of the news from Germany. She agreed that I should go back to the Erasmus MC as soon as I had received the CD with MRI images and the report. Fun how this just reinforces the fact that I'm still trying to convince medical specialists here, while in a sane world they'd be the ones helping me from the start. This still makes me feel so angry and depressed simultaneously.
My physician also had the hormone values from the blood test a few weeks ago. All levels were normal, aside from prolactin, which was elevated. She mentioned prolactin possibly being elevated due to my body fighting against the hormones I'm taking, or just from stress. Perhaps I should do more research in the medical literature, but I haven't found anything which says anything about the former. Prolactin seems to be a far more benign hormone, even: http://en.wikipedia.org/wiki/Prolactin . Stress seems to be the best reason anyway, considering my prolactin levels have never been tested before, and I've been under severe emotional stress for the past years. At any rate I have to get another blood test with about a week, and also schedule an appointment with an endocrinologist.
We also discussed why it seems as though this whole IS issue seems to be an obsession for me, a fact which I think can be explained by that I have lived withdrawn into myself for 15+ years, only really came out of it last year, and lack any kind of real life social and other skills. Having to learn those things confronts me constantly with the fact that I'm IS and thus different and sometimes even handicapped. This has resulted in many traumas embedding themselves into me.
A reminder of this being different was when after my physician appointment I went to make an appointment with my dentist. The assistant there asked me to fill in a form since this was my first appointment there, which resulted in the usual questions from my side about my name (legal and unofficial) and the use of hormones (an issue or not). This led her to think that maybe I was a transsexual or so, which made it necessary for her to explain my situation. She had seen the Oprah Winfrey show earlier this week on TV, so she was somewhat informed. God, I hate transsexuals...
Anyway, otherwise the conversation with this assistant was rather nice. She seemed to be an open and honest person. I felt quite good about the whole experience when I returned home, where shortly after I took another 2-hour 'nap'. That night there'd be a movie night after all, and I needed to be awake for it.
The movie night was organized by Alex, at his house in Almere. There were about 15 people total who arrived and left and some stayed in the time I was there. Of the people who stayed there were three girls and 5-6 men, including Pieter. It was a rather nice experience, watching bad movies and laughing at/commenting on them, until later that night.
While I was sitting on a couch with two of the girls, one of the guys felt the need to sit next to one of them and flirt with her, even putting his arm around her. It's hard to describe the feelings of disgust and wrongness which I felt rise up from my stomach at that point. Later when the three of them (the guy and the two girls) were sitting there discussing miscarriages and pregnancy in general I tried not to listen at first, but was about to yell at them to shut up when the movie fortunately interrupted their talk. This was the final straw, however, as my traumas had been fully triggered by now.
Suppressing my traumas taking so much mental strength, I was completely drained at that time at around 1.30 AM and when Pieter asked me whether we should go home (he had been on a round trip to Italy for his work on Thursday and still tired from it), I readily agreed. Muttering some apologies to the girl sitting next to me and telling her to ask Alex for the reasons behind my strange behaviour I left the place with Pieter.
On the way home in Pieter's car I felt horribly empty aside from this raging pain and depression deep inside me. I realized a few things, though, one of them being that the reason why this guy doing that made me feel so horrible was because he isn't a 'friend'. Guys to me can be two things in varying degrees: a guy and a friend. Guys I don't know or only slightly are primarily guys and are giving a chance to become friends, many failing this chance. For this reason Pieter is primarily a friend and thus I can trust him until he starts to behave more like a guy. This guy however is primarily a guy and a guy flirting with a girl is a bad, bad, evil and sinful thing. Why I think this latter I don't know, but I'm fairly sure it's deeply embedded and complex. Sorry, person who sent me an email telling me to just let go of certain traumas including this one. It ain't happening that easily.
When Pieter and I were nearly home, I began to cry softly, which he noticed after we had arrived and he comforted me for a while until I felt somewhat better. After that I stumbled inside and towards my room since I had developed a splitting headache. After taking some painkillers I went to bed.
Waking up today I felt exhausted, empty, tortured. Only obligation today is grocery shopping. I wonder if I should remove the remainders of the makeup I put on yesterday, as the black under my eyes feels somehow appropriate in describing my mood. I feel worn thin, exhausted and yes, stressed. Yesterday was a forceful reminder of why I am incapable of interacting with others outside my work. It's just like how before last year I wouldn't even try to interact with others in any non-professional manner, leaving my emotions completely out of the equation and rendering things like sexuality and relations (and of course friendship) completely irrelevant. At times like this I long back to that situation...
Maya
My physician also had the hormone values from the blood test a few weeks ago. All levels were normal, aside from prolactin, which was elevated. She mentioned prolactin possibly being elevated due to my body fighting against the hormones I'm taking, or just from stress. Perhaps I should do more research in the medical literature, but I haven't found anything which says anything about the former. Prolactin seems to be a far more benign hormone, even: http://en.wikipedia.org/wiki/Prolactin . Stress seems to be the best reason anyway, considering my prolactin levels have never been tested before, and I've been under severe emotional stress for the past years. At any rate I have to get another blood test with about a week, and also schedule an appointment with an endocrinologist.
We also discussed why it seems as though this whole IS issue seems to be an obsession for me, a fact which I think can be explained by that I have lived withdrawn into myself for 15+ years, only really came out of it last year, and lack any kind of real life social and other skills. Having to learn those things confronts me constantly with the fact that I'm IS and thus different and sometimes even handicapped. This has resulted in many traumas embedding themselves into me.
A reminder of this being different was when after my physician appointment I went to make an appointment with my dentist. The assistant there asked me to fill in a form since this was my first appointment there, which resulted in the usual questions from my side about my name (legal and unofficial) and the use of hormones (an issue or not). This led her to think that maybe I was a transsexual or so, which made it necessary for her to explain my situation. She had seen the Oprah Winfrey show earlier this week on TV, so she was somewhat informed. God, I hate transsexuals...
Anyway, otherwise the conversation with this assistant was rather nice. She seemed to be an open and honest person. I felt quite good about the whole experience when I returned home, where shortly after I took another 2-hour 'nap'. That night there'd be a movie night after all, and I needed to be awake for it.
The movie night was organized by Alex, at his house in Almere. There were about 15 people total who arrived and left and some stayed in the time I was there. Of the people who stayed there were three girls and 5-6 men, including Pieter. It was a rather nice experience, watching bad movies and laughing at/commenting on them, until later that night.
While I was sitting on a couch with two of the girls, one of the guys felt the need to sit next to one of them and flirt with her, even putting his arm around her. It's hard to describe the feelings of disgust and wrongness which I felt rise up from my stomach at that point. Later when the three of them (the guy and the two girls) were sitting there discussing miscarriages and pregnancy in general I tried not to listen at first, but was about to yell at them to shut up when the movie fortunately interrupted their talk. This was the final straw, however, as my traumas had been fully triggered by now.
Suppressing my traumas taking so much mental strength, I was completely drained at that time at around 1.30 AM and when Pieter asked me whether we should go home (he had been on a round trip to Italy for his work on Thursday and still tired from it), I readily agreed. Muttering some apologies to the girl sitting next to me and telling her to ask Alex for the reasons behind my strange behaviour I left the place with Pieter.
On the way home in Pieter's car I felt horribly empty aside from this raging pain and depression deep inside me. I realized a few things, though, one of them being that the reason why this guy doing that made me feel so horrible was because he isn't a 'friend'. Guys to me can be two things in varying degrees: a guy and a friend. Guys I don't know or only slightly are primarily guys and are giving a chance to become friends, many failing this chance. For this reason Pieter is primarily a friend and thus I can trust him until he starts to behave more like a guy. This guy however is primarily a guy and a guy flirting with a girl is a bad, bad, evil and sinful thing. Why I think this latter I don't know, but I'm fairly sure it's deeply embedded and complex. Sorry, person who sent me an email telling me to just let go of certain traumas including this one. It ain't happening that easily.
When Pieter and I were nearly home, I began to cry softly, which he noticed after we had arrived and he comforted me for a while until I felt somewhat better. After that I stumbled inside and towards my room since I had developed a splitting headache. After taking some painkillers I went to bed.
Waking up today I felt exhausted, empty, tortured. Only obligation today is grocery shopping. I wonder if I should remove the remainders of the makeup I put on yesterday, as the black under my eyes feels somehow appropriate in describing my mood. I feel worn thin, exhausted and yes, stressed. Yesterday was a forceful reminder of why I am incapable of interacting with others outside my work. It's just like how before last year I wouldn't even try to interact with others in any non-professional manner, leaving my emotions completely out of the equation and rendering things like sexuality and relations (and of course friendship) completely irrelevant. At times like this I long back to that situation...
Maya
Thursday, 12 June 2008
Back To Depression...
I should have seen this one coming... Today I've been feeling depressed and miserably all day. The reason? First of all there's the realization that right now I'm at the exact same spot where I was at the end of last year, after the MRI scan, nearly half a year ago. Then there's getting the surgery which, even if it ever happens, will probably take many months yet again. The resulting feeling of intense bitterness makes me just want to jump off a tall building or plunge something sharp into my tummy until I bleed to death. Any pain is better than this emotional distress I'm in.
Tomorrow I've got an appointment with my physician... I'll talk things over with her... she'll probably tell me to get back into contact with the Erasmus MC, who'll be slow as usual, even after screwing up the first time. There's no love in this world... just periods of calm weather in-between intense pain. Don't let me do this all on my own, please...
Odd, isn't it? Everyone expected me to cheer up after getting the confirmation on the first MRI report, but now I'm at least as depressed and suicidal as I was before, just with a slightly different focus. It just means that my life is hell and will never turn out fine. I can see no bright light in the distance, no hope, nothing to celebrate. Just more struggling and pain.
Perhaps I really should just end it all tonight...
Maya
Tomorrow I've got an appointment with my physician... I'll talk things over with her... she'll probably tell me to get back into contact with the Erasmus MC, who'll be slow as usual, even after screwing up the first time. There's no love in this world... just periods of calm weather in-between intense pain. Don't let me do this all on my own, please...
Odd, isn't it? Everyone expected me to cheer up after getting the confirmation on the first MRI report, but now I'm at least as depressed and suicidal as I was before, just with a slightly different focus. It just means that my life is hell and will never turn out fine. I can see no bright light in the distance, no hope, nothing to celebrate. Just more struggling and pain.
Perhaps I really should just end it all tonight...
Maya
Wednesday, 11 June 2008
Let's See, What's Next?
Well, to make a long story short, today I got the results back from the German clinic. I spent nearly the entire day just lying in my bed, sleeping and reading while waiting for Pieter to return from his work before opening the email, even skipping dinner and such. I felt incredibly dizzy, nauseous and everything when I got the email.
Then Pieter returned home and the first thing I did while he was with me was to read the email from Privatescan. In it the first German report, the one which had confirmed my IS condition for the very first time, was reconfirmed on all points. No womb or prostate, but a vagina, penis and testicles present. I felt incredibly relieved at reading this news, crying happy tears for a while after reading.
After dinner I also looked at the CD with MRI images I had received at the first German clinic and from what I could tell (having seen the images at the clinic), these were different images. I could indeed not see the vagina and such on it. Apparently I did get the wrong images. Definitely a bitter-sweet feeling.
Now I just need to get a copy of this second MRI report as well as a copy of the MRI images. I'll see whether I can revitalize the complaint procedure at the VUMC, and I should probably go back to the Erasmus MC with this new material. I still want to get the actual surgery in Germany, though. If only because it shaves off weeks if not months before I can go in. This means haggling with my insurance company, which should be fine if I can get support from a specialist here in the Netherlands.
Tomorrow I'm going to make an appointment with my physician to discuss matters with her, I also need to make an appointment with my dentist for a routine check, and there's the totally fun and joyful hair removal treatment. Luckily this time it's only my face and not face and lower region in one go like last time. That was a totally excruciating experience I would not care to repeat. Suffice it to say that I'm not going through this hair removal thing because it's so pleasant :P
Work? I'll get back to it starting tomorrow, but today has been yet another wasted day. At least most of my worries seem to have vanished now, if only for the moment, and my traumas reduced in severity. I'll see how things go tomorrow. There's still a big list of things to take care of, so at least I won't get bored.
It's time for some sleep now...
Maya
Then Pieter returned home and the first thing I did while he was with me was to read the email from Privatescan. In it the first German report, the one which had confirmed my IS condition for the very first time, was reconfirmed on all points. No womb or prostate, but a vagina, penis and testicles present. I felt incredibly relieved at reading this news, crying happy tears for a while after reading.
After dinner I also looked at the CD with MRI images I had received at the first German clinic and from what I could tell (having seen the images at the clinic), these were different images. I could indeed not see the vagina and such on it. Apparently I did get the wrong images. Definitely a bitter-sweet feeling.
Now I just need to get a copy of this second MRI report as well as a copy of the MRI images. I'll see whether I can revitalize the complaint procedure at the VUMC, and I should probably go back to the Erasmus MC with this new material. I still want to get the actual surgery in Germany, though. If only because it shaves off weeks if not months before I can go in. This means haggling with my insurance company, which should be fine if I can get support from a specialist here in the Netherlands.
Tomorrow I'm going to make an appointment with my physician to discuss matters with her, I also need to make an appointment with my dentist for a routine check, and there's the totally fun and joyful hair removal treatment. Luckily this time it's only my face and not face and lower region in one go like last time. That was a totally excruciating experience I would not care to repeat. Suffice it to say that I'm not going through this hair removal thing because it's so pleasant :P
Work? I'll get back to it starting tomorrow, but today has been yet another wasted day. At least most of my worries seem to have vanished now, if only for the moment, and my traumas reduced in severity. I'll see how things go tomorrow. There's still a big list of things to take care of, so at least I won't get bored.
It's time for some sleep now...
Maya
Subscribe to:
Posts (Atom)