Today I got the long-awaited phone call from the Erasmus MC. I spoke with the same doctor I saw during my last visit to that hospital. He told me that he didn't know whether the MRI analysis was done yet and couldn't get into touch with the radiologist. He'll email me with the results once he gets them.
I'm desperately trying to finish a few projects for clients, but this last disappointment isn't making it easier. First the anxiety during the days leading up to this call, then the realization that nobody at that hospital really gives anything about me...
I'm feeling absolutely miserable still, even after spending an hour or so crying on Pieter's shoulders. I'm feeling disappointed, frustrated and depressed beyond belief. I really hate this stupid body. I hate everything and everyone... I honestly hope that I won't ever wake up again, as this torture is just getting too much.
Maya
Tuesday, 29 July 2008
Sunday, 27 July 2008
Timebomb...
Last Wednesday I went to the Flevo hospital to pick up the background/referral letter for the AMC which was supposed to be there, but wasn't. At least I got a nice hour of driving on my bicycle out of it. That day I also check the AMC site to see whether I could find the endocrinologist, Linthorst, with whom I had an appointment the next day, only to discover that I couldn't find him anywhere on the site.
When I reported this to my housemate, he immediately started looking around for a reference as well and eventually called the AMC to confirm the appointment, which the department he called couldn't. So the next day at around 8 AM he called the AMC again, had the appointment confirmed (backwards appointment system) and got me a real referral letter from my physician (GP). He also called the Flevo where they seemed to be confused as to what was going on, but there had to be a letter for the AMC somewhere in the system. Before I left with Pieter to pick up the referral letter, I got a call from the Flevo hospital informing me that there was no letter after all. Geez.
So thanks to Pieter everything turned out alright after all and I headed by public transport to Amsterdam, to the AMC. Still suffering from the flu, I was quite short of breath by the time I arrived at the AMC, but still managed to arrive nicely on time and waited for Linthorst to call for me, which took about 30 minutes.
In short, he's going to look at all the data the VUMC and Erasmus MC have and will see me again in 5 weeks. Utterly useless in other words, because there's no way I can last another 5 weeks. It's bad enough to wait for next week Tuesday when I get the call from the Erasmus MC, informing me on what they've seen on the MRI images this time. I swear I'm going to hurt someone if they don't see it this time... I mean, I can f****** feel that I've got a ***** vagina and that they just can't accept it even after 3.5 years is enough to make me either want to hurt myself or direct the hatred outwards and blow up a few select hospitals.
The past few days I've begun to work more and more, to the point where my daily output is about a quarter of what it should be on a daily basis. Thursday I couldn't work at all, though. I felt so horrible at yet another confrontation with all the things I hate so much in this life that I even woke up severely depressed the next day. If it wasn't for Pieter emotionally supporting me those days things wouldn't have kind of fizzled out again like this.
While I may appear relatively calm and composed at the moment, I can feel the frustration and pain building up inside me again, which'll reach a climax on Tuesday. Bad news: self-destruction. Good news: first careful glimpses of hope. I can't change anything about it. I'm still nothing and no one until I'm told that I can finally be the person I bloody well know I am.
On a more positive note, I have finally decided to begin with modeling and as related venture photo requests. Enough people have told me that I should be a model and I'd welcome the extra money it might bring that I'm willing to give it a try. You can find more information on it at www.mayaposch.com under the heading in the menu.
Maya
When I reported this to my housemate, he immediately started looking around for a reference as well and eventually called the AMC to confirm the appointment, which the department he called couldn't. So the next day at around 8 AM he called the AMC again, had the appointment confirmed (backwards appointment system) and got me a real referral letter from my physician (GP). He also called the Flevo where they seemed to be confused as to what was going on, but there had to be a letter for the AMC somewhere in the system. Before I left with Pieter to pick up the referral letter, I got a call from the Flevo hospital informing me that there was no letter after all. Geez.
So thanks to Pieter everything turned out alright after all and I headed by public transport to Amsterdam, to the AMC. Still suffering from the flu, I was quite short of breath by the time I arrived at the AMC, but still managed to arrive nicely on time and waited for Linthorst to call for me, which took about 30 minutes.
In short, he's going to look at all the data the VUMC and Erasmus MC have and will see me again in 5 weeks. Utterly useless in other words, because there's no way I can last another 5 weeks. It's bad enough to wait for next week Tuesday when I get the call from the Erasmus MC, informing me on what they've seen on the MRI images this time. I swear I'm going to hurt someone if they don't see it this time... I mean, I can f****** feel that I've got a ***** vagina and that they just can't accept it even after 3.5 years is enough to make me either want to hurt myself or direct the hatred outwards and blow up a few select hospitals.
The past few days I've begun to work more and more, to the point where my daily output is about a quarter of what it should be on a daily basis. Thursday I couldn't work at all, though. I felt so horrible at yet another confrontation with all the things I hate so much in this life that I even woke up severely depressed the next day. If it wasn't for Pieter emotionally supporting me those days things wouldn't have kind of fizzled out again like this.
While I may appear relatively calm and composed at the moment, I can feel the frustration and pain building up inside me again, which'll reach a climax on Tuesday. Bad news: self-destruction. Good news: first careful glimpses of hope. I can't change anything about it. I'm still nothing and no one until I'm told that I can finally be the person I bloody well know I am.
On a more positive note, I have finally decided to begin with modeling and as related venture photo requests. Enough people have told me that I should be a model and I'd welcome the extra money it might bring that I'm willing to give it a try. You can find more information on it at www.mayaposch.com under the heading in the menu.
Maya
Sunday, 20 July 2008
I'm Scared...
They say that in this world, the first person you should be able to trust completely with no exceptions is yourself. For if this is not the case, you'll end up betraying yourself time and time again. Over the past years I've come to lose trust in myself, or perhaps I never really trusted myself beyond my intellect, as that's the only part of myself I've ever really known in the years that I was withdrawn. The result is this chaos and the irrational desire to harm myself.
Last Wednesday I got a letter from the VUMC's complaint commission. They're willing to look at the proper MRI images and requested my permission to obtain those and my other data from the German clinic where they're stored. I've sent the permission form back and will just have to wait from here on.
Next week I'll have to pick up a referral letter at the Flevo hospital on Wednesday, then Thursday I'm going (on my own...) to the AMC in Amsterdam to meet yet another endocrinologist. It's the third hospital which'll then be looking at my case
Sadly I can not think about these events without feeling an intense sense of despair, followed by depressions. Looking at the worst-case scenario, these hospitals will just all come back to me with the news that they didn't see anything special on the images. Second worst-case scenario is that they do see it, but can't help me, or at least not within 6 months.
The two worst fears which lead to this sense of despair are: not receiving any help for my birth defect, and secondly that I feel more and more like something which is just... freakish and shouldn't exist. I loathe the thought that I might have male parts inside me, especially a prostate. It makes me want to take a knife and cut it out of me.
I've been sick for a few days... yesterday was the first day that I felt somewhat better. I'm not sure whether it's the flu or a cold or so, especially because at the same time I've got this infection on my back which looks pretty serious. Since I started taking medication on Friday to reduce the inflammation I've begun to feel better and the infection has reduced from the ~1 cm core it started off with. I can actually lie on my back again without it hurting me. Strangely enough I kind of miss being sick, as during those few days I didn't feel depressed at all, aside from one moment when the thought crossed my mind that I must be dying with my body failing me one last time.
Last night I couldn't fall asleep easily at all. I had yet another one of those episodes where I'd be so overly sensitive that the mere touch of the quilt on my skin would drive me crazy. If only that was all of it... after getting angry and pushing my quilt away, only to try to find a comfortable position again underneath it, I suddenly found myself crying again and sinking away into despair. Then the part which frightens me occurred again, when I started repetitive movements again, with me rolling from my left side to my back to my left side to my back to my left side to my back... It seems to have a calming effect on me, though, but it's weird to have your body just switch into that kind of movement and not allowing your consciousness to interrupt it. I persisted in this movement for about 15 minutes until I fell asleep from exhaustion.
I realized during this episode that I could keep myself from at least digging my nails into my skin and drawing blood like I've done before. I hate scars.
Now... in the comments to my previous post it was suggested that I'm just allowing myself to sink away into misery, as though I'm not fighting back and just letting life crush me like a bug. I'm not such a person. I hate losing and getting the short end of the stick. I want to be the best, the number one, the ultimate in everything. Yet on the other hand I'm fighting a battle not only against life, but also against myself and I doubt many people realize how difficult and dangerous such a war is.
I wish I could at least stop fighting myself...
Another worry is of course of a financial nature. I can _not_ work every day for more than 5 hours like others. My current level of concentration and the chaos inside doesn't allow for this. Yet next week I'll have to order new medicine for the hormone therapy again and shortly after that there's the money to pay to my insurance company and then the hair removal treatment, and I'm already months behind on my payments to my housemate. Again, I'm learning to really hate myself.
Maya
Last Wednesday I got a letter from the VUMC's complaint commission. They're willing to look at the proper MRI images and requested my permission to obtain those and my other data from the German clinic where they're stored. I've sent the permission form back and will just have to wait from here on.
Next week I'll have to pick up a referral letter at the Flevo hospital on Wednesday, then Thursday I'm going (on my own...) to the AMC in Amsterdam to meet yet another endocrinologist. It's the third hospital which'll then be looking at my case
Sadly I can not think about these events without feeling an intense sense of despair, followed by depressions. Looking at the worst-case scenario, these hospitals will just all come back to me with the news that they didn't see anything special on the images. Second worst-case scenario is that they do see it, but can't help me, or at least not within 6 months.
The two worst fears which lead to this sense of despair are: not receiving any help for my birth defect, and secondly that I feel more and more like something which is just... freakish and shouldn't exist. I loathe the thought that I might have male parts inside me, especially a prostate. It makes me want to take a knife and cut it out of me.
I've been sick for a few days... yesterday was the first day that I felt somewhat better. I'm not sure whether it's the flu or a cold or so, especially because at the same time I've got this infection on my back which looks pretty serious. Since I started taking medication on Friday to reduce the inflammation I've begun to feel better and the infection has reduced from the ~1 cm core it started off with. I can actually lie on my back again without it hurting me. Strangely enough I kind of miss being sick, as during those few days I didn't feel depressed at all, aside from one moment when the thought crossed my mind that I must be dying with my body failing me one last time.
Last night I couldn't fall asleep easily at all. I had yet another one of those episodes where I'd be so overly sensitive that the mere touch of the quilt on my skin would drive me crazy. If only that was all of it... after getting angry and pushing my quilt away, only to try to find a comfortable position again underneath it, I suddenly found myself crying again and sinking away into despair. Then the part which frightens me occurred again, when I started repetitive movements again, with me rolling from my left side to my back to my left side to my back to my left side to my back... It seems to have a calming effect on me, though, but it's weird to have your body just switch into that kind of movement and not allowing your consciousness to interrupt it. I persisted in this movement for about 15 minutes until I fell asleep from exhaustion.
I realized during this episode that I could keep myself from at least digging my nails into my skin and drawing blood like I've done before. I hate scars.
Now... in the comments to my previous post it was suggested that I'm just allowing myself to sink away into misery, as though I'm not fighting back and just letting life crush me like a bug. I'm not such a person. I hate losing and getting the short end of the stick. I want to be the best, the number one, the ultimate in everything. Yet on the other hand I'm fighting a battle not only against life, but also against myself and I doubt many people realize how difficult and dangerous such a war is.
I wish I could at least stop fighting myself...
Another worry is of course of a financial nature. I can _not_ work every day for more than 5 hours like others. My current level of concentration and the chaos inside doesn't allow for this. Yet next week I'll have to order new medicine for the hormone therapy again and shortly after that there's the money to pay to my insurance company and then the hair removal treatment, and I'm already months behind on my payments to my housemate. Again, I'm learning to really hate myself.
Maya
Wednesday, 16 July 2008
Fine, I Get The Hint...
I don't feel that I can keep up pretending that things are different from how they truly are. Through some kind of foolish hope I kept wishing for people to just step up, show their interest in my general health and happiness and do everything in their power to help me. So far this hasn't happened and it never will.
The past years I've written to dozens of newspapers, TV-channels and now to my first news site as well (Slashdot.org), all resulting in a resounding desinterest in my entire existence. Okay, so that's the media, which is supposed to be cold and heartless. What about people around me? Aside from dozens of them proclaiming how they feel sorry for me and telling me to hang on because things are bound to get better, I get zero support. Medically, then? The medical specialists whose task it is to help those with issues only they can resolve. I've seen more psychologists, endocrinologists and other specialists than I care to remember. With my visit to the AMC next week I'll have visited 7 hospitals over this issue, with only the visit to Germany being actually useful.
I'm through with this all... the past days it's sinking in that nobody is going to help me, that this issue will never be resolved (shut up with your 'it's going to be fine, just hang on') and that I've got such a horrifically disfigured body that I just can't live with it. I don't want this body anymore, it's useless, a stone around my neck which'll drag me down to my doom.
Unfortunately it's also the one thing keeping my brain alive, so that leaves me with the remaining option, to just end everything. There's no point in my existence anyway. Nobody cares whether I exist or not (don't tell me you do care, because it's just a lie) and frankly, at this point I'm losing all interest in my own existence. So what if I finish these projects I'm working on right now or not? I'll never make enough money to even live on my own, not in this rapidly degrading mental state I'm in. Everything I do is useless, pointless nonsense, just like this entire world.
I don't want to go on anymore...
Maya
The past years I've written to dozens of newspapers, TV-channels and now to my first news site as well (Slashdot.org), all resulting in a resounding desinterest in my entire existence. Okay, so that's the media, which is supposed to be cold and heartless. What about people around me? Aside from dozens of them proclaiming how they feel sorry for me and telling me to hang on because things are bound to get better, I get zero support. Medically, then? The medical specialists whose task it is to help those with issues only they can resolve. I've seen more psychologists, endocrinologists and other specialists than I care to remember. With my visit to the AMC next week I'll have visited 7 hospitals over this issue, with only the visit to Germany being actually useful.
I'm through with this all... the past days it's sinking in that nobody is going to help me, that this issue will never be resolved (shut up with your 'it's going to be fine, just hang on') and that I've got such a horrifically disfigured body that I just can't live with it. I don't want this body anymore, it's useless, a stone around my neck which'll drag me down to my doom.
Unfortunately it's also the one thing keeping my brain alive, so that leaves me with the remaining option, to just end everything. There's no point in my existence anyway. Nobody cares whether I exist or not (don't tell me you do care, because it's just a lie) and frankly, at this point I'm losing all interest in my own existence. So what if I finish these projects I'm working on right now or not? I'll never make enough money to even live on my own, not in this rapidly degrading mental state I'm in. Everything I do is useless, pointless nonsense, just like this entire world.
I don't want to go on anymore...
Maya
Friday, 11 July 2008
Quick Update...
Yesterday I went to the endocrinologist here at the Flevo hospital. It was quite a nice man who actually seemed to consider me to be a person. Though he admitted that he could not help me directly, he would find someone for me who could and call me back in 2 weeks time. As an aside it turned out that that my prolactin level was totally back to normal. No worries there, apparently.
Today I got a phone call from this endocrinologist, informing me that he had found someone, an endocrinologist at the AMC in Amsterdam, which is the other big hospital in that city. He had made an appointment for me with that person on the 24th this month, asked me to pick up some background information and such at the Flevo hospital and also asked me to inform this endocrinologist at the AMC to relay any news back to him. Two thoughts: first time a doctor did something way before he had to, and geez, this'll be the 7th hospital I'll visit regarding this IS matter.
When I was at the beauty salon earlier today to get zapped again (also rendering me totally broke again...), the woman treating me suggested that I should write to a public TV broadcaster here as they have some shows which focus on medical blunders and such. I sent them an email and hope to hear more of this next week.
I'm also considering asking for help on websites like Slashdot.org. Though many people warn me that it might be a mistake to seek publicity, I feel that it is necessary for me to keep my sanity. After 3.5 years filled with the worst types of mental abuse including brainwashing and incredible uncertainty, I have lost the concept of what even an emotional buffer might be. All day long I have this head-ache like feeling, pressing down on me, accompanied by sudden outbursts of intense sadness and anger as well as regular thoughts about suicide. It's the most terrible feeling in the entire world to want to live so badly, yet crave for release from this nightmare through whatever means...
Maya
Today I got a phone call from this endocrinologist, informing me that he had found someone, an endocrinologist at the AMC in Amsterdam, which is the other big hospital in that city. He had made an appointment for me with that person on the 24th this month, asked me to pick up some background information and such at the Flevo hospital and also asked me to inform this endocrinologist at the AMC to relay any news back to him. Two thoughts: first time a doctor did something way before he had to, and geez, this'll be the 7th hospital I'll visit regarding this IS matter.
When I was at the beauty salon earlier today to get zapped again (also rendering me totally broke again...), the woman treating me suggested that I should write to a public TV broadcaster here as they have some shows which focus on medical blunders and such. I sent them an email and hope to hear more of this next week.
I'm also considering asking for help on websites like Slashdot.org. Though many people warn me that it might be a mistake to seek publicity, I feel that it is necessary for me to keep my sanity. After 3.5 years filled with the worst types of mental abuse including brainwashing and incredible uncertainty, I have lost the concept of what even an emotional buffer might be. All day long I have this head-ache like feeling, pressing down on me, accompanied by sudden outbursts of intense sadness and anger as well as regular thoughts about suicide. It's the most terrible feeling in the entire world to want to live so badly, yet crave for release from this nightmare through whatever means...
Maya
Friday, 4 July 2008
Get Me The F*** Out Of This Madhouse
Okay, I'm just... bloody angry at everything and everyone who is making my life miserable. Yesterday I went to the Erasmus MC to deliver the bloody CD with the correct MRI images because sending it by mail would be too bloody difficult for them to handle. Yay for spending 16 Euro when 44 cents would have sufficed, not to mention wasting an entire day on it. Bloody amateurs.
Then in the hospital I encountered a wall of scepticism when the male gynaecologist I was talking to (since De Berg wasn't available, and I sure as hell wasn't going to wait until half-way through this month to deliver the bloody CD) launched into a story about how they probably couldn't help me at the Erasmus MC and that at most they could confirm the German results for me. Then as the final bloody icing on the cake I was told to wait a whole friggin' month (29th of July) for the results.
Sure as hell I'm not going to wait for those slowpokes. I made an appointment with an endocrinologist at the local hospital here in Almere (Flevo) on Thursday next week. They actually allow you to make an appointment online there without having to wait in queue on the phone for 30 bloody minutes. I thought that was nifty. I went to the Flevo today as well to have some blood taken for testing my prolactin levels, which probably haven't dropped much seeing as to how much stress I'm still under.
Stress... things are getting to the point where I can turn into an emotional wreck in milliseconds and will often burst out in tears during conversations and other moments during any day. The amount of mental agony I'm experiencing is enough to make me consider suicide during those moments more and more often, not to mention more vividly. Regarding sexuality, I have to actively pretend now that I'm a convinced asexual person to keep my sanity. I think it's just bloody awful that I've been reduced to this state during 3.5 years and still nobody bloody cares enough about me to help me directly. Yes, I'm looking at you, bloody amateuristic Dutch medical 'specialists'. To me whether any of you live or die doesn't make any apparent difference to my situation.
*takes a deep breath*
One thing I did realize during the conversation at the Erasmus MC yesterday was that I do indeed not need any bloody Dutch specialists or hospitals. I can go to Germany right this moment and get surgery there. No sweat. Just some financial and logistical issues, as I'd have to pay for the surgery myself (insurer would need to be convinced to pay up, and they like to have Dutch specialists tell them what to do), and it's still quite a trip to Germany from here. With those two issues solved this nightmare could be over before even my birthday later this year. What a present that'd be...
Maya
Then in the hospital I encountered a wall of scepticism when the male gynaecologist I was talking to (since De Berg wasn't available, and I sure as hell wasn't going to wait until half-way through this month to deliver the bloody CD) launched into a story about how they probably couldn't help me at the Erasmus MC and that at most they could confirm the German results for me. Then as the final bloody icing on the cake I was told to wait a whole friggin' month (29th of July) for the results.
Sure as hell I'm not going to wait for those slowpokes. I made an appointment with an endocrinologist at the local hospital here in Almere (Flevo) on Thursday next week. They actually allow you to make an appointment online there without having to wait in queue on the phone for 30 bloody minutes. I thought that was nifty. I went to the Flevo today as well to have some blood taken for testing my prolactin levels, which probably haven't dropped much seeing as to how much stress I'm still under.
Stress... things are getting to the point where I can turn into an emotional wreck in milliseconds and will often burst out in tears during conversations and other moments during any day. The amount of mental agony I'm experiencing is enough to make me consider suicide during those moments more and more often, not to mention more vividly. Regarding sexuality, I have to actively pretend now that I'm a convinced asexual person to keep my sanity. I think it's just bloody awful that I've been reduced to this state during 3.5 years and still nobody bloody cares enough about me to help me directly. Yes, I'm looking at you, bloody amateuristic Dutch medical 'specialists'. To me whether any of you live or die doesn't make any apparent difference to my situation.
*takes a deep breath*
One thing I did realize during the conversation at the Erasmus MC yesterday was that I do indeed not need any bloody Dutch specialists or hospitals. I can go to Germany right this moment and get surgery there. No sweat. Just some financial and logistical issues, as I'd have to pay for the surgery myself (insurer would need to be convinced to pay up, and they like to have Dutch specialists tell them what to do), and it's still quite a trip to Germany from here. With those two issues solved this nightmare could be over before even my birthday later this year. What a present that'd be...
Maya
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