Physicians who can only lie to me. GPs who do not understand me and have me arrested when I snap. Police who use excessive force and cause me severe injuries, both physically and mentally.
I have been crying since this morning, as well as occasionally punching myself on my head, my chest and abdomen. I can't deal with what has happened to me and what has still happened. At this point I can only think of how much I want this pain to end. But that requires people to help me, which has been proven to be impossible, as physicians in this country will only lie to me, and foreign hospitals will reject my case for stupid reasons.
As I wrote to my psychotherapist earlier, this country has knowingly and willingly made me suffer, and yet I am not allowed to take my own life. If they offered me a suicide pill I'd gladly take it. My situation can only be described as suffering, and what people are doing to me as torture.
I'm going to try and stay alive for another few weeks or so and see whether anything changes. I doubt it, though. No promises about not slitting my own wrists the coming weeks either. I can't take much more of this pain.
Curse this all to Hell...
Update: as might be expected, a DID personality fragment had taken over. This one seems to center around the betrayal I have suffered over the years and contains such memories and traumatic events. It has been shelved again for the moment, but I'm feeling utterly exhausted and drained right now, and most decidedly not happy.
Maya
Saturday, 28 May 2011
Friday, 27 May 2011
Dutch Physicians: A Trinity Of Lies And Deception
I have to write this to express my rage at some recent and some not so recent discoveries.
The first huge lie I was presented with was that of the ridiculous diagnosis of autoparagynaecophilia, which has been fully analyzed in an earlier post already.
Yesterday and today I confirmed two more lies, these involve the genetic testing, specifically that of the mosaic testing. Earlier I mentioned that their statistical probability of 99% exclusion of mosaicism was nonsense, as two tissues wouldn't be sufficient for that. There's lie number two. For the third lie I quote the following:
"Often, most or all of the cells of a single cell type will be composed of a single cell line, i.e. The blood may be composed prominently of one cell line, and the internal organs of the other cell line." [1]
By telling me that a test performed on white blood cells alone (single cell type) was a mosaic test by itself, they lied yet again. When I was talking to this American Medicinal Chemist/Biochemist I mentioned before, he mentioned that he had talked to MDs and that the suggested number of samples would be about 20-30.
Mosaic testing is commonly performed during IVF procedures (Preimplantation genetic diagnosis) using the FISH procedure, where it's relatively easy spotted as you're talking about only a dozen cells or less. In a fully developed organism there's no telling which cell line ended up in one part of the body and which in the other. To have the geneticist of the UMCG hospital here lie to me so blatantly is just inexcusable.
I'm more than disgruntled. I'm furious, and rightfully so.
[1] http://en.wikipedia.org/wiki/Chimera_%28genetics%29
Maya
The first huge lie I was presented with was that of the ridiculous diagnosis of autoparagynaecophilia, which has been fully analyzed in an earlier post already.
Yesterday and today I confirmed two more lies, these involve the genetic testing, specifically that of the mosaic testing. Earlier I mentioned that their statistical probability of 99% exclusion of mosaicism was nonsense, as two tissues wouldn't be sufficient for that. There's lie number two. For the third lie I quote the following:
"Often, most or all of the cells of a single cell type will be composed of a single cell line, i.e. The blood may be composed prominently of one cell line, and the internal organs of the other cell line." [1]
By telling me that a test performed on white blood cells alone (single cell type) was a mosaic test by itself, they lied yet again. When I was talking to this American Medicinal Chemist/Biochemist I mentioned before, he mentioned that he had talked to MDs and that the suggested number of samples would be about 20-30.
Mosaic testing is commonly performed during IVF procedures (Preimplantation genetic diagnosis) using the FISH procedure, where it's relatively easy spotted as you're talking about only a dozen cells or less. In a fully developed organism there's no telling which cell line ended up in one part of the body and which in the other. To have the geneticist of the UMCG hospital here lie to me so blatantly is just inexcusable.
I'm more than disgruntled. I'm furious, and rightfully so.
[1] http://en.wikipedia.org/wiki/Chimera_%28genetics%29
Maya
Peripheral Neuropathy Continued: Right Leg
One week ago around this time I got released from prison. It feels like a few months ago. It's one experience I will never forget. It still pains me to my very soul what has been done to me during those two days. Its horrors have changed me for life.
What it has changed as well is my short- and medium-term outlook. Yesterday I mentioned that I have confirmed peripheral neuropathy in both arms. This morning my right foot suddenly began to turn numb and has now spread to my entire lower leg and knee. My ability to walk unassisted has been almost completely impaired now. Muscle response is alright, but I can not coordinate my movements, as I can not feel enough to compensate, making it likely that I'll fall if I try to walk.
While I was imprisoned last week I was limping due to my right knee hurting a lot. Last Saturday I noticed huge bruising on the back of the right knee in addition to the bruising on the knee itself, as shown on the picture I took. Apparently the nerves in my right knee suffered traumatic injury as well. Only left leg seems to have escaped unscathed. So far.
The numbness and pain in my hands keeps getting worse as well. Today I started on painkillers (ibuprofen), but it's not enough to make the discomfort and pain go away. Last week's nightmare hasn't ended yet. It's still continuing, constantly reminding me that my situation is most likely hopeless, that there is no way out of it, and that there will be no medical specialist or surgeon there to help me. That's all a lie. The only way is down, towards certain doom.
Or so it seems. There's a possibility that this one surgeon will accept my case, but that's over a week ago now and I haven't heard anything yet. Most likely he has rejected the case already, like everyone has. There's also a possibility that the Minister of Health will interfere in my case, or that questions will be asked thanks to my contacts in Dutch politics. But neither is very likely. There are more important issues to deal with in this country, even if they do not improve the situation for common citizens.
Because I'm not the only person in this country who is suffering because of the failings of the medical or healthcare system. I'm not the only one whose situation has worsened significantly due to the strict adherence to protocols. Pretty much every month there's a new story in the news about failings in the healthcare of this country. One never hears about politics interfering in this, however. I'd be shocked if they did now.
It'd be nice, though.
Yesterday I talked with an American Medicinal Chemist/Biochemist who is interested in my case, and whose wife (a molecular biologist) did her BA thesis on intersexual issues. One thing he commented on was the claim from the UMCG hospital here that after testing 2 tissues for mosaicism, it was concluded that the possibility of mosaicism was less than 1% (99% exclusion). The truth lies with simple High School statistics: 50 and 50 is only 75% exclusion. To reach 99%, you'd need to test a lot of samples, the exact number of which can be calculated using continuous probability distributions [1].
It's not the first time that physicians in this country have lied to me. I doubt it's the last.
[1] http://en.wikipedia.org/wiki/Probability_theory#Continuous_probability_distributions
Maya
What it has changed as well is my short- and medium-term outlook. Yesterday I mentioned that I have confirmed peripheral neuropathy in both arms. This morning my right foot suddenly began to turn numb and has now spread to my entire lower leg and knee. My ability to walk unassisted has been almost completely impaired now. Muscle response is alright, but I can not coordinate my movements, as I can not feel enough to compensate, making it likely that I'll fall if I try to walk.
While I was imprisoned last week I was limping due to my right knee hurting a lot. Last Saturday I noticed huge bruising on the back of the right knee in addition to the bruising on the knee itself, as shown on the picture I took. Apparently the nerves in my right knee suffered traumatic injury as well. Only left leg seems to have escaped unscathed. So far.
The numbness and pain in my hands keeps getting worse as well. Today I started on painkillers (ibuprofen), but it's not enough to make the discomfort and pain go away. Last week's nightmare hasn't ended yet. It's still continuing, constantly reminding me that my situation is most likely hopeless, that there is no way out of it, and that there will be no medical specialist or surgeon there to help me. That's all a lie. The only way is down, towards certain doom.
Or so it seems. There's a possibility that this one surgeon will accept my case, but that's over a week ago now and I haven't heard anything yet. Most likely he has rejected the case already, like everyone has. There's also a possibility that the Minister of Health will interfere in my case, or that questions will be asked thanks to my contacts in Dutch politics. But neither is very likely. There are more important issues to deal with in this country, even if they do not improve the situation for common citizens.
Because I'm not the only person in this country who is suffering because of the failings of the medical or healthcare system. I'm not the only one whose situation has worsened significantly due to the strict adherence to protocols. Pretty much every month there's a new story in the news about failings in the healthcare of this country. One never hears about politics interfering in this, however. I'd be shocked if they did now.
It'd be nice, though.
Yesterday I talked with an American Medicinal Chemist/Biochemist who is interested in my case, and whose wife (a molecular biologist) did her BA thesis on intersexual issues. One thing he commented on was the claim from the UMCG hospital here that after testing 2 tissues for mosaicism, it was concluded that the possibility of mosaicism was less than 1% (99% exclusion). The truth lies with simple High School statistics: 50 and 50 is only 75% exclusion. To reach 99%, you'd need to test a lot of samples, the exact number of which can be calculated using continuous probability distributions [1].
It's not the first time that physicians in this country have lied to me. I doubt it's the last.
[1] http://en.wikipedia.org/wiki/Probability_theory#Continuous_probability_distributions
Maya
Thursday, 26 May 2011
Peripheral Neuropathy
"Peripheral neuropathy often causes numbness and pain in your hands and feet. People typically describe the pain of peripheral neuropathy as tingling or burning, while they may compare the loss of sensation to the feeling of wearing a thin stocking or glove.
Peripheral neuropathy is caused by nerve damage. It can result from such problems as traumatic injuries, infections, metabolic problems and exposure to toxins. One of the most common causes is diabetes.
In many cases, peripheral neuropathy symptoms improve with time ― especially if it's caused by an underlying condition that can be treated. A number of medications are often used to reduce the painful symptoms of peripheral neuropathy."
http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131
That's the issue I'm dealing with at the moment with my wrists, hands and to some extent my arms. The skin of both hands are partially numb to touch, the sensation you get when you have a leg that has 'fallen asleep'. It's a very annoying sensation to have continuously.
Further I feel sudden stabbing pains, like someone is pricking me with a needle in my finger tips or other places. The burning and tingling sensations occur during the day a few times.
So last week I, under influence from my DID personality fragment, destroyed a few glass items, got injured in the process, and got arrested and treated so forcefully that I suffered nerve damage in my wrists. Sounds like a wonderful story, doesn't it? It's currently impairing my ability to work, as typing on a keyboard makes my hands feel fatigued, painful and burning after a while.
Isn't it amazing to be a Dutch citizen? Have medical specialist harass and make fun of you for your medical condition and refuse to treat you, have psychologists make up things on the spot and call you crazy, and when you do get angry once after over half a decade, you get arrested and treated like you just killed a bunch of people. I'm so proud to live there, it almost brings tears to my eyes. Oh wait, that's from the agony of my situation.
*rants on*
Update: someone else pointed me to the following item on Wikipedia:
"Cheiralgia paresthetica is a neuropathy of the hand generally caused by compression or trauma to the superficial branch of the radial nerve.[1] The area affected is typically on the back or side of the hand at the base of the thumb, near the anatomical snuffbox, but may extend up the back of the thumb and index finger and across the back of the hand.[1][2] Symptoms include numbness, tingling, burning or pain. Since the nerve branch is sensory there is no motor impairment.[2] It may be distinguished from de Quervain syndrome because it is not dependent on motion of the hand or fingers.[3]
The most common cause is thought to be constriction of the wrist, as with a bracelet or watchband (hence reference to "wristwatch neuropathy"). It is especially associated with the use of handcuffs and is therefore commonly referred to as handcuff neuropathy. Other injuries or surgery in the wrist area can also lead to symptoms, including surgery for other syndromes such as de Quervain's.[4] The exact etiology is unknown, as it is unclear whether direct pressure by the constricting item is alone responsible, or whether edema associated with the constriction also contributes.[2]
Symptoms commonly resolve on their own within several months when the constriction is removed; NSAIDs are commonly prescribed.[3] In some cases surgical decompression is required.[3] The efficacy of cortisone and laser treatment is disputed.[3] Permanent damage is possible."
http://en.wikipedia.org/wiki/Cheiralgia_paresthetica
Maya
Peripheral neuropathy is caused by nerve damage. It can result from such problems as traumatic injuries, infections, metabolic problems and exposure to toxins. One of the most common causes is diabetes.
In many cases, peripheral neuropathy symptoms improve with time ― especially if it's caused by an underlying condition that can be treated. A number of medications are often used to reduce the painful symptoms of peripheral neuropathy."
http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131
That's the issue I'm dealing with at the moment with my wrists, hands and to some extent my arms. The skin of both hands are partially numb to touch, the sensation you get when you have a leg that has 'fallen asleep'. It's a very annoying sensation to have continuously.
Further I feel sudden stabbing pains, like someone is pricking me with a needle in my finger tips or other places. The burning and tingling sensations occur during the day a few times.
So last week I, under influence from my DID personality fragment, destroyed a few glass items, got injured in the process, and got arrested and treated so forcefully that I suffered nerve damage in my wrists. Sounds like a wonderful story, doesn't it? It's currently impairing my ability to work, as typing on a keyboard makes my hands feel fatigued, painful and burning after a while.
Isn't it amazing to be a Dutch citizen? Have medical specialist harass and make fun of you for your medical condition and refuse to treat you, have psychologists make up things on the spot and call you crazy, and when you do get angry once after over half a decade, you get arrested and treated like you just killed a bunch of people. I'm so proud to live there, it almost brings tears to my eyes. Oh wait, that's from the agony of my situation.
*rants on*
Update: someone else pointed me to the following item on Wikipedia:
"Cheiralgia paresthetica is a neuropathy of the hand generally caused by compression or trauma to the superficial branch of the radial nerve.[1] The area affected is typically on the back or side of the hand at the base of the thumb, near the anatomical snuffbox, but may extend up the back of the thumb and index finger and across the back of the hand.[1][2] Symptoms include numbness, tingling, burning or pain. Since the nerve branch is sensory there is no motor impairment.[2] It may be distinguished from de Quervain syndrome because it is not dependent on motion of the hand or fingers.[3]
The most common cause is thought to be constriction of the wrist, as with a bracelet or watchband (hence reference to "wristwatch neuropathy"). It is especially associated with the use of handcuffs and is therefore commonly referred to as handcuff neuropathy. Other injuries or surgery in the wrist area can also lead to symptoms, including surgery for other syndromes such as de Quervain's.[4] The exact etiology is unknown, as it is unclear whether direct pressure by the constricting item is alone responsible, or whether edema associated with the constriction also contributes.[2]
Symptoms commonly resolve on their own within several months when the constriction is removed; NSAIDs are commonly prescribed.[3] In some cases surgical decompression is required.[3] The efficacy of cortisone and laser treatment is disputed.[3] Permanent damage is possible."
http://en.wikipedia.org/wiki/Cheiralgia_paresthetica
Maya
Tuesday, 24 May 2011
Response From Dutch Queen Beatrix
A few weeks ago I wrote and mailed a letter to the Dutch Queen Beatrix. A few moments ago I received the response, written for her by the director of the Queen's Cabinet. I have saved a scan of it here:
http://www.mayaposch.com/gallery/index.php?gallery=important&image=letter_from_dutch_queen_beatrix_resized.jpg
Translated into English it says (forgive my crude translation):
"Dear Ms. Posch,
At the request of Her Majesty the Queen I confirm receiving your letter of May 8th.
Your letter has been forwarded due to ministerial responsibilities to the Minister of Public Health, Well-being and Sport."
So it seems like my letter passed the 'looney bin' test, got read by the Queen and has now been passed on for further consideration to the Minister most suitable for my case. It makes me feel a tiny bit fuzzy and warm inside.
Maya
http://www.mayaposch.com/gallery/index.php?gallery=important&image=letter_from_dutch_queen_beatrix_resized.jpg
Translated into English it says (forgive my crude translation):
"Dear Ms. Posch,
At the request of Her Majesty the Queen I confirm receiving your letter of May 8th.
Your letter has been forwarded due to ministerial responsibilities to the Minister of Public Health, Well-being and Sport."
So it seems like my letter passed the 'looney bin' test, got read by the Queen and has now been passed on for further consideration to the Minister most suitable for my case. It makes me feel a tiny bit fuzzy and warm inside.
Maya
Monday, 23 May 2011
Leap Of Faith Towards A Better Future
I just returned from a trip to the nearby city to formally end all relations with the psychological center there, the crisis center/Dimence I talked about before. I made it very clear to them that their behaviour towards me while I was at the police station was unacceptable, in not recognizing the trauma involved in asking me to return to my cell, among other things. I have also described how it is the medical progress which helps me feel good and improves my emotional stability, whereas psychological help can have no effect and at most worsen the situation, by bringing things to the surface. Remember that my EMDR therapist refused to treat me at this point because she was afraid that bringing back all those memories would destroy me.
I also went to the emergency room at the Twenteborg hospital. There they informed me that my wrists are fine, but that my right wrist is experiencing severe swelling, which is pinching off a few nerves, which causes the numb sensation. This should return to normal on its own. The x-rays looked clean. I'm glad it wasn't anything serious, even if my hands and wrists still hurt a lot.
Everything seems to be focusing on a hopefully upcoming appointment with a plastic surgeon. This week there should be the final approval. During one or more appointments there would then be exploratory surgery or similar and possibly any further surgery. It should provide me with the answers I have been seeking for over six and a half years. I wouldn't say that I'm obsessing about it, but the thought of having the closure to such a long period so nearby is beyond tantalizing.
It would also finally get rid of scenes such as at the ER earlier, where I had to use my old hospital ID card from 2006, with my old name and such on it. It took a lot of confusion and explaining before the lady behind the counter accepted that it was my card and not some guy's and that I'm not a guy, but not officially a woman either. Then again the same explanation with the doctor who saw me. I just want to get rid of such scenes. Wishful thinking isn't going to help me there. Psychological treatment won't help me there.
Please allow me to be just me. One examination. One surgery.
Please...
Maya
I also went to the emergency room at the Twenteborg hospital. There they informed me that my wrists are fine, but that my right wrist is experiencing severe swelling, which is pinching off a few nerves, which causes the numb sensation. This should return to normal on its own. The x-rays looked clean. I'm glad it wasn't anything serious, even if my hands and wrists still hurt a lot.
Everything seems to be focusing on a hopefully upcoming appointment with a plastic surgeon. This week there should be the final approval. During one or more appointments there would then be exploratory surgery or similar and possibly any further surgery. It should provide me with the answers I have been seeking for over six and a half years. I wouldn't say that I'm obsessing about it, but the thought of having the closure to such a long period so nearby is beyond tantalizing.
It would also finally get rid of scenes such as at the ER earlier, where I had to use my old hospital ID card from 2006, with my old name and such on it. It took a lot of confusion and explaining before the lady behind the counter accepted that it was my card and not some guy's and that I'm not a guy, but not officially a woman either. Then again the same explanation with the doctor who saw me. I just want to get rid of such scenes. Wishful thinking isn't going to help me there. Psychological treatment won't help me there.
Please allow me to be just me. One examination. One surgery.
Please...
Maya
Sunday, 22 May 2011
The Slow Recovery Process
Yesterday I have been talking a lot with friends about my recent experiences. Especially those from the US were quite shocked at how the police treated me, as that is absolutely not standard procedure in the US. Their support has really helped me and still helps me somewhat deal with this recent trauma.
Physically I'm still in a world of pain. I can shuffle, but not really walk, my shoulders, back and arms are very painful and sore, and my biggest worry are my wrists, which were incredibly painful for a while already. Especially the right one, since it developed this tingling sensation in the right thumb area, indicative of nerve damage. Since motion in it is still fine I'm hoping that by not over-exerting it it'll be fine.
I really really hope that no permanent damage has been done to my wrist or hands/arms by the rough police treatment. I'd be beyond devastated if I learned that I'd be partially handicapped for the rest of my life. It'll be hard enough already to live with the memories of these events.
Tomorrow I have an appointment at Dimence, the psychological center for this region. They want to offer me psychological help. I'll tell them the same thing I told them last Friday: psychologists and psychiatrists in this country are partially responsible for my troubles and never once has one helped me. Either they offer me concrete proof that they are going to and can help me or no deal.
I feel as though the healthcare system in this country is akin to a pack of wolves, circling around me, waiting for my attention to slip so that they can strike and tear out my throat. I can not trust anyone. Rely on no one. Everyone whose profession it is to help is actually there to do harm. This is the fact I have yet had to bitterly accept this week.
There's only a minor pinprick of light at the moment. I told before that a friend has found a surgeon willing to do exploratory surgery and such. Next week he'll get the final confirmation if everything goes right and that may mean the beginning of the end of at least the medical drama in a matter of weeks.
Will it happen? I don't know. So far I can find no fault in it, but trust is something fragile and easily lost. I do trust this friend to find the right people and to do everything he can to help me. I can rely on him. The real question is whether I can rely on this surgeon, I guess. I don't know this person, and although I have never gotten so far as to have an actual surgeon look at my case I remain cautious.
Else the wolves will devour me.
Maya
Physically I'm still in a world of pain. I can shuffle, but not really walk, my shoulders, back and arms are very painful and sore, and my biggest worry are my wrists, which were incredibly painful for a while already. Especially the right one, since it developed this tingling sensation in the right thumb area, indicative of nerve damage. Since motion in it is still fine I'm hoping that by not over-exerting it it'll be fine.
I really really hope that no permanent damage has been done to my wrist or hands/arms by the rough police treatment. I'd be beyond devastated if I learned that I'd be partially handicapped for the rest of my life. It'll be hard enough already to live with the memories of these events.
Tomorrow I have an appointment at Dimence, the psychological center for this region. They want to offer me psychological help. I'll tell them the same thing I told them last Friday: psychologists and psychiatrists in this country are partially responsible for my troubles and never once has one helped me. Either they offer me concrete proof that they are going to and can help me or no deal.
I feel as though the healthcare system in this country is akin to a pack of wolves, circling around me, waiting for my attention to slip so that they can strike and tear out my throat. I can not trust anyone. Rely on no one. Everyone whose profession it is to help is actually there to do harm. This is the fact I have yet had to bitterly accept this week.
There's only a minor pinprick of light at the moment. I told before that a friend has found a surgeon willing to do exploratory surgery and such. Next week he'll get the final confirmation if everything goes right and that may mean the beginning of the end of at least the medical drama in a matter of weeks.
Will it happen? I don't know. So far I can find no fault in it, but trust is something fragile and easily lost. I do trust this friend to find the right people and to do everything he can to help me. I can rely on him. The real question is whether I can rely on this surgeon, I guess. I don't know this person, and although I have never gotten so far as to have an actual surgeon look at my case I remain cautious.
Else the wolves will devour me.
Maya
Saturday, 21 May 2011
Taking The Nightmare A Notch Further
Today's story is a long one. It is a good idea to be acquainted with my earlier analysis on dissociation, as well as the follow-up documents I sent to my GP. See the preceding blog posts for these.
Lately things at my GP's office have been going a bit difficult, such as them not preparing referral letters. When I talked with my GP about getting an appointment at the local hospital she said she'd call me once she knew more.Yesterday I learned that she had made an appointment by about the next day. On Thursday however I still hadn't heard anything from her, so I went to the GP's office to ask whether she had already done about about setting up that appointment. The assistant said my GP would call me later that afternoon.
Half an hour before the GP's office closed and with no phone call yet my mother and I decided to go there to ask what was going on. I think I may have taken some passion flower extract-based pills earlier that day, but I can not recall for sure. Looking back I'm fairly sure that I started off that Thursday with one of my DIS fragment personalities already worming its way into control.
Anyway, my mother and I walk up to the front desk at the GP's office and my mother asks about that phone call and whether we can talk to a doctor. Later my mother told me that I volunteered some background information, to which the assistant replied with something along the lines of that she didn't know about that stuff since she wasn't a doctor. I figure that was the final trigger, possibly enhanced by those passion flower pills, which made me quite agitated that one time I took them before and got exposed to stressful triggers.
I remember only flashes of what happened next. Me trying to pull out the sliding glass dividers of the front desk. My right hand moving to crush a glass vase or vases to my left, on the desk. The realization from my real personality which had been shoved to the back of my mind that I was hitting glass and that I probably just had badly injured myself. There was no stopping, though.
Initial damage count was those glass vases or vase, some plant thing shoved around a bit, a sign knocked over to a 45 degrees angle and the glass top of a model thing there in the lobby. Oh, and one decorative vase.
It was at that point that I finally bothered to look at my right hand noticed it being covered with blood, as well as the floor being covered with it. I regained enough control to sit there, leaning against a side rail, next to a puddle of my own blood while holding my hand up high so as to decrease the bleeding. My mother pressed a tissue against my bleeding hand. She was expecting the GP assistants and/or a doctor to run out to help, but instead they had totally locked down the place.
After what seemed like an eternity two police agents came, who started talking with a male GP. After a few moments they moved away to talk privately. Feeling that something bad was going to happen to me again there was one more violent surge from the fragment personality when I got up, tore down a glass display case and exited the building. I was walking there slowly when suddenly I heard running behind me and I was painfully grabbed and smacked into the side of the building. Lots of yelling about spreading my legs. They wanted to put hand cuffs on me. It didn't seem to work. I got pushed onto the ground rather painfully. The cuffs were put on really tightly. I screamed in pain and begged them to loosen them. They told me to shut up.
They told me to stand up and walk, but the pain was so intense from those cuffs that I nearly blacked out, so they dragged me to their patrol car. They tore part of my clothing in the process. I was put in the rear seat, with a female agent holding my neck and smacking me into the side door every time I begged her to loosen the cuffs while they drove me to the police station here in Rijssen.
There I got dragged out of the car again, into some kind of room, got stripped of my bag, jacket and shoes and then thrown back into the car again. This time lying down while the agent was sitting on me. After what seemed like an eternity of agony we arrived at the police station in Borne. There I did manage to walk on my own, to prevent more agony. I got pushed into a cell, forced onto my knees and got stripped down to my panties and socks. I was so shocked and traumatized by then that I was totally dazed.
So when they asked me to cooperate to put on the prison garment I didn't respond within the ten milliseconds you are given to answer to each order and was thrown onto the bench slash bed and left lying there mostly naked for a while. It was cold there and I was shivering. I wasn't feeling too upset yet, mostly dazed still.
After a while a doctor came in to look at my hand, they put on the prison garment, a kind of bag you'd use for potatoes, and I was told that I'd be taken to the hospital to check for glass splinters in my hand. I was taken there in a police van used to transporting criminals. They didn't find any glass splinters at the hospital. I got driven back and was told to sleep. I refused dinner. They had TV there, four channels. It eased the pain a bit. I heard I was charged with destruction of property.
I couldn't sleep at all, curled up in a make-shift bed on the floor in the end and dozed off a bit when the doctor came in again. I had been screaming and crying a lot, he said, scaring the guards. I pointed out that my hand was bleeding again. He took me to his office, I got a bandaid for it. I asked whether I could go the toilet at the other side of the hallway, but one of the guards told me to use the toilet in my cell. It was humiliating.
The rest of the night I spent watching TV, tearing a roll of toilet paper to pieces and finally dozed off for a bit. I refused breakfast and tried watching TV while screaming and crying every once in a while. It was like the walls were closing in on me. I'm not claustrophobic, but the sensation of being there in a cell, with nothing to do, nothing to decide, nothing to live or exist for except for that one moment when the cell door or the little hatch in it opens... it's the perfect definition of Hell as far as I'm concerned.
I must have pressed the intercom button at least a dozen times. Begging to help me each time as I was going crazy and was getting urges to hurt myself. They said they were looking at my case at the station here in Rijssen and that they'd be here soon. Soon meant another few hours.
I got my hormone pills, well, they gave me the whole Cyproteron pill while I only take half a day, and one Progynova, refusing to give all three at once. I also got the Xanax sedative, but I doubt it did anything in that situation. I tried to get out of the cell once, begging them to let me go and walking up to them. They threw me back into the cell with enough force for me to hit my head against the wall.
Then things finally started moving somewhat... I put together an official statement with two higher-ranking police personnel from the Rijssen station which was the first relaxing moment since I got detained, as they were friendly and understanding. After that I talked to some people from Dimence, basically the crisis center I talked about before. There were a couple of familiar faces. They apparently had accepted my dissociation explanation and agreed with the need for medical help in my intersex case, as did the police officers I talked to earlier, by the way.
Then those Dimence peopled wanted to talk in private and the agents there wanted to put me back into my cell. I nearly went crazy at the thought and begged them to not put me back. They dragged me along anyway until I froze meters in front of the cell. One agent then suggested to put me in the airing room, where inmates can get some fresh air. I agreed to this. It was my first breath of fresh air in about 12 hours by then.
After a while I talked to someone from a kind of reintegration service, or 'reclassering' as it's called here. The woman I talked to was very kind and understanding and told me to call her as soon as I got out. I said I would. I also said that I hoped that they wouldn't force me to stay in the cell for another night as that would probably kill me. She comforted me while I cried some more. She also told me to drink something as I looked horrible, but I said I wouldn't eat or drink until I got out.
After that they dragged me off to my cell again. I tried to run away, but they grabbed me and threw me back into the cell. There I once again went pretty much into shock again. I did try watching some Discovery Channel to distract me, which helped a bit. After a while they let me air some more. I had a chat with the people from Dimence, who said they'd like to see me on Monday to discuss the psychological help part. They could not tell me when the Justice Department would get back to me on my case. An agent said that it'd definitely be before 6 PM, however.
So I sat there waiting and crying occasionally. Listening to the birds and traffic sounds, while sunlight filtered through the grid fixed between the walls. After a few eons and assorted eternities an agent opened the door and just said 'Good news.'. I was free.
They had me clean up my cell before I was taken to the room where they kept my belongings. We had a bit of fun trying to make one of the zippers on my boots working as a bit of latex glove had become stuck in it. We also joked about men not being able to properly take off a woman's boot as they a belt had been detached which isn't necessary to touch at all. I then told them that I would gladly never see them again. We all had a bit of a laugh there, I guess. Prison humour.
I was then taken home by those two Rijssen police officers. Once home I heard that my mother had immediately gone to the police station here in Rijssen to have her statement taken. She also went to the station in Borne, but was told that she could not see me. She had taken a big bag of things along for me, including a book to read, chocolate, a plushie, a toothbrush and so on. I had never been given any of these items except for the medication.
As I'm only charged with destruction of property the case will be closed as soon as the damages have been paid. The exact amount of damage I'll have to pay will have to be determined by the Justice Department. They have both sides of the story and they will decide on where the balance lies.
Meanwhile I'm noticing that aside from being overjoyed at being home and free again, the whole experience has left an incredibly mark on me, both physically and psychologically. On a scale of 1-10 where 10 is most traumatizing, I'd rate this event a 9.5. Physically I am covered with bruises. My wrists are agony city as I can't even touch them without flinching in pain. I limp while walking because my right knee has been hurt very badly.
See the attached photos for an idea of the visible bruises. Note that I do not bruise easily and that for example the swelling on my head is not visible, nor those on my back and some other places.
Naturally I won't be seeing my current GP any more. They say they are 'afraid' of me. If they had listened to the warnings I had sent them, none of this would have happened. Life is a bloody tragedy.
Maya
Thursday, 19 May 2011
The Necessity Of Progress
I just sent the following email to my GP's office, as I'm beginning to feel negative things stir again inside my head:
---
Dear Sir/Madam,
After my previous appointment with Dr Smit last Monday it appeared that the urgency of my situation had been well understood. The promise to call me as soon as an appointment had been made with both a urologist and gynaecologist at the Twenteborg hospital sounded very welcome to me. Considering that this concerns the alternative for interment on the psychiatric ward of the Twenteborg since there was no place for me there I assumed that this would be dealt with very seriously.
My expectations after Monday were as follows:
Now, a few days later, my expectations are shifting:
Which of these expectation is it going to be? I don't know. My experiences of the past 6.5 years tell me that it's going to be the latter as it's always gone like that, and my life is worthless anyway in the eyes of physicians and psychologists. The little bit of hope I still have says that it can still be the former.
I have an enormous need for information, for transparency and honesty. People have treated me these past years as a number, as a piece of dirt. By now I know at least as much about the medical aspects of my case as the average physician, however. Do not treat me like an ignorant patient who doesn't know what she is talking about anyway. Help me. Treat me like a person.
Please,
Maya Posch
---
Dear Sir/Madam,
After my previous appointment with Dr Smit last Monday it appeared that the urgency of my situation had been well understood. The promise to call me as soon as an appointment had been made with both a urologist and gynaecologist at the Twenteborg hospital sounded very welcome to me. Considering that this concerns the alternative for interment on the psychiatric ward of the Twenteborg since there was no place for me there I assumed that this would be dealt with very seriously.
My expectations after Monday were as follows:
- An appointment would be made with these two physicians.
- They would read the summary of my medical case which I sent last Monday and based on it plan examinations.
- I'd then visit for maybe a single intake appointment prior to having the examinations performed.
- All research questions would be answered satisfactory and any surgeries as specified in the summary performed.
- This all would be done within a month, or maybe a bit longer.
Now, a few days later, my expectations are shifting:
- After a lot of urging from my side Dr Smit will manage to make an appointment with these physicians.
- They will not have read my summary or even received. They'll just want to have a look at me.
- A follow-up appointment will be made to discuss the possibility of examinations. Over a month has already passed by now.
- During this appointment they will inform me that they can not/don't want to/don't dare to take on my case, and that I'll have to go back to the VUMC/UMCG hospitals because they have more experience there, even though there they have refused to look at my case, refused to even consider me intersexual, and did my DID and other serious forms of dissociation as well as PTSD form and worsen there.
Which of these expectation is it going to be? I don't know. My experiences of the past 6.5 years tell me that it's going to be the latter as it's always gone like that, and my life is worthless anyway in the eyes of physicians and psychologists. The little bit of hope I still have says that it can still be the former.
I have an enormous need for information, for transparency and honesty. People have treated me these past years as a number, as a piece of dirt. By now I know at least as much about the medical aspects of my case as the average physician, however. Do not treat me like an ignorant patient who doesn't know what she is talking about anyway. Help me. Treat me like a person.
Please,
Maya Posch
Monday, 16 May 2011
Overview Clinical Symptoms & Characteristics
Today I visited my GP. She was quite receptive to my Dissociative Identity Disorder (DID) diagnosis, having experienced some of my other personalities before. She promised she'd arrange an appointment with a urologist and gynaecologist at the local hospital. I'll be called with the details later.
The below is the document I wrote to be sent to these physicians to help matters along:
---
Facts
Speculative
Research questions
Practical
Maya
The below is the document I wrote to be sent to these physicians to help matters along:
---
Facts
- Low testosterone level prior to beginning hormone therapy (~2 nmol/L; normal for men 7-20, for women <0.7). Using 25 mg Cyproteron a day for suppressing testosterone. With male to female transsexuals 100 mg/day is common.
- Feminine formed skeleton including pelvis and skull; no forehead ridge.
- Index and ring finger are equal in length. With men the latter is generally longer due to higher testosterone levels.
- No Adam's apple.
- Relatively minor facial hair, referred to by beauticians as 'severe fuzz'.
- Average female dress sizes and feminine build including muscles.
- No ovaries or womb. Confirmed through ultrasound at Twenteborg hospital, Almelo.
- Current chest size is 75A. Weight ~61 kg. Height 175 cm.
Speculative
- Present prostate is probably a female prostate: before hormone therapy ejaculation was possible, but was akin to female ejaculation, not male. Ejaculate has not been examined.
- After starting hormone therapy ejaculation no longer possible.
- Formation body and genitalia matching XX/XY hermaphroditism most closely. Examination of white bloodcells and cheek slime cells showed presence of XY in these cells.
- Externally the genitals seem male. Right testicle hasn't fully descended, sensations during stimulation do not match those of a male member.
- Experience of orgasm is indicated as being feminine.
- At location of vagina a kind of hole can be felt through the skin, which relaxes and contracts depending on the state of sexual excitement. This is also a very erogenic zone. Penetration of a few centimeters possible, limited by the flexibility of the skin.
- Presence of vagina/proto-vagina?
- Two German private clinics determine presence of blind/closed off vagina on MRI scan, in the Netherlands this interpretation isn't shared. The black tube which is visible is either ignored, or described as being air in/outside the rectum. This structure is identical on all three MRI scans.
Research questions
- What is the structure underneath the skin at the location of a vagina?
- XX/XY hermaphroditism or other kind of intersexuality?
- Risks associated with the current physical state without any surgery?
- Surgery options with regard to creating labia and/or extending the vagina in case it is present?
Practical
- Removal of testicles considering the lack of use for these, both before the hormone therapy as afterwards. Use of Cyproteron for testosterone suppression gives higher risk on thrombosis as side-effect, and also strains the liver.
- An exploratory surgery is possibly the most effective way to answer research question #1.
Maya
Sunday, 15 May 2011
I Want To Kill. I Want To Cry. I Want To Die. I Want...
Waking up this morning feeling okay, aside from having had some dreams involving my former housemate again which is never pleasant. I then realized suddenly that I have been discriminated against by my health insurance company and basically the government by refusing coverage transsexuals would get. I told myself I would complain to the proper government instances and that made things calm down a bit.
At that point other ugly things began to stir inside me, however. There's this fragment I just call 'rage'. It's what I felt when I destroyed property at the VUMC hospital a number of years ago after they had casually dismissed the German MRI results. It's what I occasionally feel when I think about all those people who should be helping me but instead are taunting and torturing me.
I can see their faces as I destroy everything on the desk they're sitting behind. When I hit them repeatedly with something heavy and blunt. When I destroy everything. If they won't give me anything and are fine with destroying my life, then I'll destroy theirs. Heck, I'll kill them. It'd settle the score.
Other times I just feel so rejected and lonely that I want to curl up in a dark corner and cry myself to death.
And above all there are the memories. Each fragment inside me has its own set. One, like the violence fragment, has many of those times when I felt like striking out, something which I never really have. All that got damaged at the VUMC that time were some poor plants and waste bins.
Thinking about tomorrow's appointment with my GP where I was promised I would be told about the help I'll be getting, but where they'll tell me something disappointing again, I can feel the rising hatred and violence inside. There's also this fear of losing myself in that white-hot rage. It'd feel awesome, smashing up everything, strangling people, being in control. It'd not accomplish anything, of course, aside from me getting locked up and ending my life.
Still, I can not maintain control over these fragments. One of the characteristics of Dissociative Identity Disorder (DID) is that these fragments can take over a person's behaviour completely, reducing the main personality to a back seat position. If I get disappointing news tomorrow there's a good chance I'll finally snap for real. It's been coming for a long, long time.
If there's anything the Dutch healthcare system has taught me is that it's wrong to be intersexual. I am wrong. My existence is wrong. I'm a blemish on this planet. They all hate me. They want me to die. They want me to suffer. These are all facts. Undeniable facts gathered during 6.5 years which have deeply embedded themselves into my psyche.
Welcome to my world. Welcome to Hell.
Maya
At that point other ugly things began to stir inside me, however. There's this fragment I just call 'rage'. It's what I felt when I destroyed property at the VUMC hospital a number of years ago after they had casually dismissed the German MRI results. It's what I occasionally feel when I think about all those people who should be helping me but instead are taunting and torturing me.
I can see their faces as I destroy everything on the desk they're sitting behind. When I hit them repeatedly with something heavy and blunt. When I destroy everything. If they won't give me anything and are fine with destroying my life, then I'll destroy theirs. Heck, I'll kill them. It'd settle the score.
Other times I just feel so rejected and lonely that I want to curl up in a dark corner and cry myself to death.
And above all there are the memories. Each fragment inside me has its own set. One, like the violence fragment, has many of those times when I felt like striking out, something which I never really have. All that got damaged at the VUMC that time were some poor plants and waste bins.
Thinking about tomorrow's appointment with my GP where I was promised I would be told about the help I'll be getting, but where they'll tell me something disappointing again, I can feel the rising hatred and violence inside. There's also this fear of losing myself in that white-hot rage. It'd feel awesome, smashing up everything, strangling people, being in control. It'd not accomplish anything, of course, aside from me getting locked up and ending my life.
Still, I can not maintain control over these fragments. One of the characteristics of Dissociative Identity Disorder (DID) is that these fragments can take over a person's behaviour completely, reducing the main personality to a back seat position. If I get disappointing news tomorrow there's a good chance I'll finally snap for real. It's been coming for a long, long time.
If there's anything the Dutch healthcare system has taught me is that it's wrong to be intersexual. I am wrong. My existence is wrong. I'm a blemish on this planet. They all hate me. They want me to die. They want me to suffer. These are all facts. Undeniable facts gathered during 6.5 years which have deeply embedded themselves into my psyche.
Welcome to my world. Welcome to Hell.
Maya
Saturday, 14 May 2011
Dissociation
I have often used the term 'paralyzation attack' to describe these events where I would just completely retreat into myself, be fully paralyzed including speech and be largely insensitive to pain. I have had these events for over two years, with the severity strongly increasing during the past weeks. Two days ago I learned that it is called dissociation [1]:
"Dissociation is a partial or complete disruption of the normal integration of a person's conscious or psychological functioning. Dissociation can be a response to trauma or drugs and perhaps allows the mind to distance itself from experiences that are too much for the psyche to process at that time."
Everybody experiences dissociation, when daydreaming or just spacing out for a moment [2]. It is when one is exposed to severe stress and trauma that this defense mechanism goes into overdrive to protect your psyche, say during physical and/or sexual abuse, war or other times where survival is called for. In the worst case this can lead to the creation of separate identities, each of which contains the memories of a particular (set of) traumatic event(s).
As summarized by [2], the severity of dissociation goes as follows:
Everyday Dissociation we all experience that is healthy in general
day dreaming
spacing out
fantasy
Traumatic Dissociation that comes from trauma and is not integrated in the psyche
numbness
deadened emotions
leaving one's body
Severe Traumatic Dissociation comes from major trauma that is not integrated in the psyche
derealization - constant experience of dissociation
depersonalization - not feeling the sense of "Me" or feeling your body as belonging to yourself
forming separate identities or self-states
fully formed identities
partially formed identities with specific roles
emotion states that are fragments
Reading through a descriptive list of frequently asked questions like [3] the first thing I noticed is that the description given for depersonalization is exactly like how I described how I saw myself while growing up. The sense of not knowing who this person in the mirror is, not really having one's body as a part of oneself.
Derealization is something I experienced later on when I became disassociated with the world around me, basically after I was forced to move away from the house where I was raised and had spent my entire youth. I lost my sense of smell and much of my sense of hearing back then in addition to having severe issues connecting with the world around me on anything but a purely cold, rational level. This improved for a while, but has taken a turn for the worse again during the last few years.
I have also observed shifts in my personality and behaviour over the past years which are consistent with Dissociative Identity Disorder, as quoted from [3]:
Dissociative Identity Disorder (previously known as Multiple Personality Disorder) is the most severe and chronic manifestation of dissociation, characterized by the presence of two or more distinct identities or personality states that recurrently take control of the individual’s behavior, accompanied by an inability to recall important personal information that is too extensive to be explained by ordinary forgetfulness. It is now recognized that these dissociated states are not fully-formed personalities, but rather represent a fragmented sense of identity. The amnesia typically associated with Dissociative Identity Disorder is asymmetrical, with different identity states remembering different aspects of autobiographical information. There is usually a host personality who identifies with the client’s real name. Typically, the host personality is not aware of the presence of other alters (American Psychiatric Association, 2000; Fine, 1999; Frey, 2001; Kluft, 1999; Kluft, Steinberg & Spitzer, 1988; Maldonado et al., 2002; Spiegel & Carden~a, 1991; Steinberg et al., 1993). The different personalities may serve distinct roles in coping with problem areas. An average of 2 to 4 personalities/alters are present at diagnosis, with an average of 13 to 15 personalities emerging over the course of treatment (Coons, Bowman & Milstein, 1988; Maldonado et al., 2002). Environmental events usually trigger a sudden shifting from one personality to another (Maldonado et al., 2002).
As my emotional state was very much underdeveloped at the time when I was exposed to the Dutch gender teams and associated psychologists - averaging around 8-10 years old in my own estimate - the trauma caused has probably resulted in the development of these identity fragments, and explains the sudden moodswings I can have during a single day, going from carefree, optimistic, talkative about my hobbies and interests to being extremely agitated and angry to gloomy and depressed to outright hysterical and/or suicidal. Each of these fragments and emotional states is associated with particular memories.
I am aware of the presence of these fragments, and I try to avoid them. Their mere presence is however akin to a Sword of Damocles. The occurrence of such strong dissociation as of late that I will pass out on the midst of the street, something which has never happened before, is a clear indication that something has to be done.
The early signs of depersonalization disorder during my youth show that the trauma began there, and is most likely associated with my intersex condition, as the only other thing bothering me at the time was my giftedness, but that didn't interfere too much in my relations with others, as far as I can remember. It was the associating with others where my body played a role, such as with the segregation into the boys and the girls and their associated activities where I became a complete outsider.
This then persisted until early 2005 when I discovered what was most likely the problem with my body. Ideally I would have received proper medical treatment and psychological care and the depersonalization disorder would have faded away. Instead further doubt was cast on what this body I have is about, increasing the severity of the depersonalization disorder, and eventually leading to the development of further dissociative disorders, including Dissociative Identity Disorder (DID).
Solving this tangled mess will involve starting at the part where things went wrong, namely during early 2005, whereby the ideal scenario for that period will have to be followed, together with psychological support to deal with the personality fragments from the DID. At any cost should further worsening of the dissociative disorder be prevented due to self-harm and suicide risks.
Next week I should be assigned a urologist from the local Twenteborg hospital (Almelo). I will be showing that person as well as my GP and the psychiatrist I'll be talking to this article, as from what I understand dissociative disorder is still quite poorly understood by psychologists and medical personnel.
Maya
[1] http://en.wikipedia.org/wiki/Dissociation
[2] http://www.therapist4me.com/Dissociation.htm
[3] http://www.isst-d.org/education/faq-dissociation.htm
"Dissociation is a partial or complete disruption of the normal integration of a person's conscious or psychological functioning. Dissociation can be a response to trauma or drugs and perhaps allows the mind to distance itself from experiences that are too much for the psyche to process at that time."
Everybody experiences dissociation, when daydreaming or just spacing out for a moment [2]. It is when one is exposed to severe stress and trauma that this defense mechanism goes into overdrive to protect your psyche, say during physical and/or sexual abuse, war or other times where survival is called for. In the worst case this can lead to the creation of separate identities, each of which contains the memories of a particular (set of) traumatic event(s).
As summarized by [2], the severity of dissociation goes as follows:
Everyday Dissociation we all experience that is healthy in general
day dreaming
spacing out
fantasy
Traumatic Dissociation that comes from trauma and is not integrated in the psyche
numbness
deadened emotions
leaving one's body
Severe Traumatic Dissociation comes from major trauma that is not integrated in the psyche
derealization - constant experience of dissociation
depersonalization - not feeling the sense of "Me" or feeling your body as belonging to yourself
forming separate identities or self-states
fully formed identities
partially formed identities with specific roles
emotion states that are fragments
Reading through a descriptive list of frequently asked questions like [3] the first thing I noticed is that the description given for depersonalization is exactly like how I described how I saw myself while growing up. The sense of not knowing who this person in the mirror is, not really having one's body as a part of oneself.
Derealization is something I experienced later on when I became disassociated with the world around me, basically after I was forced to move away from the house where I was raised and had spent my entire youth. I lost my sense of smell and much of my sense of hearing back then in addition to having severe issues connecting with the world around me on anything but a purely cold, rational level. This improved for a while, but has taken a turn for the worse again during the last few years.
I have also observed shifts in my personality and behaviour over the past years which are consistent with Dissociative Identity Disorder, as quoted from [3]:
Dissociative Identity Disorder (previously known as Multiple Personality Disorder) is the most severe and chronic manifestation of dissociation, characterized by the presence of two or more distinct identities or personality states that recurrently take control of the individual’s behavior, accompanied by an inability to recall important personal information that is too extensive to be explained by ordinary forgetfulness. It is now recognized that these dissociated states are not fully-formed personalities, but rather represent a fragmented sense of identity. The amnesia typically associated with Dissociative Identity Disorder is asymmetrical, with different identity states remembering different aspects of autobiographical information. There is usually a host personality who identifies with the client’s real name. Typically, the host personality is not aware of the presence of other alters (American Psychiatric Association, 2000; Fine, 1999; Frey, 2001; Kluft, 1999; Kluft, Steinberg & Spitzer, 1988; Maldonado et al., 2002; Spiegel & Carden~a, 1991; Steinberg et al., 1993). The different personalities may serve distinct roles in coping with problem areas. An average of 2 to 4 personalities/alters are present at diagnosis, with an average of 13 to 15 personalities emerging over the course of treatment (Coons, Bowman & Milstein, 1988; Maldonado et al., 2002). Environmental events usually trigger a sudden shifting from one personality to another (Maldonado et al., 2002).
As my emotional state was very much underdeveloped at the time when I was exposed to the Dutch gender teams and associated psychologists - averaging around 8-10 years old in my own estimate - the trauma caused has probably resulted in the development of these identity fragments, and explains the sudden moodswings I can have during a single day, going from carefree, optimistic, talkative about my hobbies and interests to being extremely agitated and angry to gloomy and depressed to outright hysterical and/or suicidal. Each of these fragments and emotional states is associated with particular memories.
I am aware of the presence of these fragments, and I try to avoid them. Their mere presence is however akin to a Sword of Damocles. The occurrence of such strong dissociation as of late that I will pass out on the midst of the street, something which has never happened before, is a clear indication that something has to be done.
The early signs of depersonalization disorder during my youth show that the trauma began there, and is most likely associated with my intersex condition, as the only other thing bothering me at the time was my giftedness, but that didn't interfere too much in my relations with others, as far as I can remember. It was the associating with others where my body played a role, such as with the segregation into the boys and the girls and their associated activities where I became a complete outsider.
This then persisted until early 2005 when I discovered what was most likely the problem with my body. Ideally I would have received proper medical treatment and psychological care and the depersonalization disorder would have faded away. Instead further doubt was cast on what this body I have is about, increasing the severity of the depersonalization disorder, and eventually leading to the development of further dissociative disorders, including Dissociative Identity Disorder (DID).
Solving this tangled mess will involve starting at the part where things went wrong, namely during early 2005, whereby the ideal scenario for that period will have to be followed, together with psychological support to deal with the personality fragments from the DID. At any cost should further worsening of the dissociative disorder be prevented due to self-harm and suicide risks.
Next week I should be assigned a urologist from the local Twenteborg hospital (Almelo). I will be showing that person as well as my GP and the psychiatrist I'll be talking to this article, as from what I understand dissociative disorder is still quite poorly understood by psychologists and medical personnel.
Maya
[1] http://en.wikipedia.org/wiki/Dissociation
[2] http://www.therapist4me.com/Dissociation.htm
[3] http://www.isst-d.org/education/faq-dissociation.htm
Friday, 13 May 2011
Why It Sucks To Be Intersexual
Got a phone call today from my insurance company. They won't provide full coverage for my electrolysis therapy because it's part of the base package, and it's the government which determines which goes into that. Not sure where to complain about it, but for now it seems that I'm out of over 3,500 Euro, which transsexuals do get covered by default. Pissed off? You bet. Kind of at a loss what to do to change this, though.
Further, I won't be staying at the hospital in Almelo for a few weeks as there is no place there for new patients. I talked about it with a GP earlier, and he was receptive to my suggestion of talking with a urologist from that same hospital, to address the medical case. Monday morning when I have an appointment with my own GP I should hear more about what has been discussed and or proposed. Hopefully they'll be willing to examine me, as there is a sense of urgency they should be aware of as well by now.
In this all there is the overwhelming feeling that there is nothing pleasant about being intersexual, that it is a curse which has made my life miserable from when I was a few years old and hasn't lessened in impact since that time. I need to solve it. I'm desperate. There is no other way out, even if one ignorant person after another keeps insisting I'm looking at this the wrong way. They do not see the past two decades and what has happened during that time. They do not know what it's like to have always lived with a body that is akin to a mechanical shell rather than a human body.
Please, do not judge what you do not understand. I try my best to not do the same. I expect the same from others. I have a body which does stuff, which makes me experience things and which responds in certain ways. And never once do I understand why. How am I supposed to feel at home in such a body? It's like living in a haunted house. You'd feel pretty creeped out after a while too and want to move away. Unfortunately I can not move, and the Ghostbusters are on an extended holiday it appears.
I indicated to the GP I talked to earlier that I'd want to have this case resolved within a month or so, as I can't take much longer. Hopefully it will work out. Hopefully they will treat me with respect, instead of calling me all kinds of names and insisting that I can't possibly be intersexual.
I want to live a happy life. I want to work on my games. I want to move to Australia. I want to make lots of friends. I want to make awesome products which'll help and amuse a lot of people. I want to discover and learn all that there is to learn and discover.
And then there is this body and this wall of medical specialists who are in my way. Excuse me, but could you please let me through?
Maya
Further, I won't be staying at the hospital in Almelo for a few weeks as there is no place there for new patients. I talked about it with a GP earlier, and he was receptive to my suggestion of talking with a urologist from that same hospital, to address the medical case. Monday morning when I have an appointment with my own GP I should hear more about what has been discussed and or proposed. Hopefully they'll be willing to examine me, as there is a sense of urgency they should be aware of as well by now.
In this all there is the overwhelming feeling that there is nothing pleasant about being intersexual, that it is a curse which has made my life miserable from when I was a few years old and hasn't lessened in impact since that time. I need to solve it. I'm desperate. There is no other way out, even if one ignorant person after another keeps insisting I'm looking at this the wrong way. They do not see the past two decades and what has happened during that time. They do not know what it's like to have always lived with a body that is akin to a mechanical shell rather than a human body.
Please, do not judge what you do not understand. I try my best to not do the same. I expect the same from others. I have a body which does stuff, which makes me experience things and which responds in certain ways. And never once do I understand why. How am I supposed to feel at home in such a body? It's like living in a haunted house. You'd feel pretty creeped out after a while too and want to move away. Unfortunately I can not move, and the Ghostbusters are on an extended holiday it appears.
I indicated to the GP I talked to earlier that I'd want to have this case resolved within a month or so, as I can't take much longer. Hopefully it will work out. Hopefully they will treat me with respect, instead of calling me all kinds of names and insisting that I can't possibly be intersexual.
I want to live a happy life. I want to work on my games. I want to move to Australia. I want to make lots of friends. I want to make awesome products which'll help and amuse a lot of people. I want to discover and learn all that there is to learn and discover.
And then there is this body and this wall of medical specialists who are in my way. Excuse me, but could you please let me through?
Maya
Wednesday, 11 May 2011
Paralyzed At The ER
I'll keep this a bit brief as my right arm still hurts a fair bit from the infuse they inserted at the ER. In short things went totally haywire while I was at an appointment with my GP. I was accompanied by my mother who had insisted to come along. Something about how my mother said certain things made me suddenly erupt in violent behaviour. I hit her arm and tried to push her over. Then I walked around in the city for a while realizing that I could never go back and that my life was basically ending at that point.
After a while I did return to the GP's office, but she had just left. As I walked outside again I leaned against a wall, feeling downright miserable. A woman who was passing by on her bicycle asked me whether I was okay, and whether I shouldn't sit down. I tried to answer, but gave up and just slid down onto the ground. Further I remember a man telling me to look at him, but all I could see was a blurry outline. Then I basically passed out.
I remember hearing voices and yelling in the background, as well as lots of prodding. Then a bumpy ambulance ride and the arrival at the hospital. I still couldn't speak at that point, move even a finger, or even keep my eyes open. There was one assistant doing some basic tests, taking blood and such, but I could only answer his questions by faintly moving my head to indicate yes or no.
After a while I was visited by a doctor, who was quite kind. She indicated that the blood tests came all back normal and that I could go back home. It's all due to stress, of course.
I had a look at my medical file as I got it from my previous GP, and it's a depressing read. Seeing every single Dutch specialist say that I can't be intersexual, that I'm just a confused male with gender dysphoria and such.
It makes me wonder again whether they're maybe right, but then I remember this body of mine which I and others do not understand. Heck, those same specialists never could answer why my body works a certain way.
*smashes something in frustration*
So yeah.. this one friend I mentioned yesterday has found someone to have exploratory surgery performed, so as to go directly to the core of the issue. If I do have a vagina there, I'm a hermaphrodite and the rest are details. If it's something else, then more research needs to be done. Quite the direct approach, and I hope it can be done soon. It won't be in the EU or US, by the way. That's all I know so far.
Maya
After a while I did return to the GP's office, but she had just left. As I walked outside again I leaned against a wall, feeling downright miserable. A woman who was passing by on her bicycle asked me whether I was okay, and whether I shouldn't sit down. I tried to answer, but gave up and just slid down onto the ground. Further I remember a man telling me to look at him, but all I could see was a blurry outline. Then I basically passed out.
I remember hearing voices and yelling in the background, as well as lots of prodding. Then a bumpy ambulance ride and the arrival at the hospital. I still couldn't speak at that point, move even a finger, or even keep my eyes open. There was one assistant doing some basic tests, taking blood and such, but I could only answer his questions by faintly moving my head to indicate yes or no.
After a while I was visited by a doctor, who was quite kind. She indicated that the blood tests came all back normal and that I could go back home. It's all due to stress, of course.
I had a look at my medical file as I got it from my previous GP, and it's a depressing read. Seeing every single Dutch specialist say that I can't be intersexual, that I'm just a confused male with gender dysphoria and such.
It makes me wonder again whether they're maybe right, but then I remember this body of mine which I and others do not understand. Heck, those same specialists never could answer why my body works a certain way.
*smashes something in frustration*
So yeah.. this one friend I mentioned yesterday has found someone to have exploratory surgery performed, so as to go directly to the core of the issue. If I do have a vagina there, I'm a hermaphrodite and the rest are details. If it's something else, then more research needs to be done. Quite the direct approach, and I hope it can be done soon. It won't be in the EU or US, by the way. That's all I know so far.
Maya
Tuesday, 10 May 2011
Farewell, John Hopkins Medical?
Just got an email from one of my best friends, Jan, who has already done so much for me these past years, including funding the Medical Second Opinion at JHM, and much more.
This time he informed me that he has possibly found a surgeon willing to perform exploratory surgery on me. He also informed me that he's in talks with two foreign clinics who could possibly help me with diagnosis & treatment. These would be much cheaper than JHM as well.
A large part of me hopes that this works out, as from what I understand these are European clinics, which would make the logistics a lot easier, and if I get to keep more money, then that'd make migrating to Australia so much easier later on.
Here's keeping my paws, ears and tail crossed.
Maya
This time he informed me that he has possibly found a surgeon willing to perform exploratory surgery on me. He also informed me that he's in talks with two foreign clinics who could possibly help me with diagnosis & treatment. These would be much cheaper than JHM as well.
A large part of me hopes that this works out, as from what I understand these are European clinics, which would make the logistics a lot easier, and if I get to keep more money, then that'd make migrating to Australia so much easier later on.
Here's keeping my paws, ears and tail crossed.
Maya
When Things Go Wrong
So shortly after my previous blog post and email to John Hopkins Medical something snapped inside me. First getting discriminated against by my insurance company for being intersexual, and then JHM also treating me like that for being intersexual, accusing me of being transsexual and wanting sex-reassignment surgery whereas I have never mentioned such a thing.
I basically snapped, completely lost my mind, tore bleeding gauges in my arms and afflicted a lot more blunt trauma. Part of me urged me to go to my GP's office, which I did. There while waiting for an assistant I fainted due to some kind of overload and got rushed into a treatment room. My usual GP wasn't present, though, and they couldn't do much for me, so I tried to go back home again after spending half an hour just sitting there on a bench outside the medical building. Half-way through I didn't feel well again, and tried to get off my bike to rest for a bit. This failed and I collapsed on the sidewalk. Within minutes people were standing around me, offering assistance.
The police also arrived and they brought me back to the GP's office. There the only thing they could do was call the crisis center for psychological cases. They'll be talking with me later today. Won't help a bit, of course. I require medical assistance, but JHM has abandoned me.
Chances of finding another hospital willing & capable of helping me is virtually zero now. Tomorrow I have another appointment with my GP. I will then file a request for euthanasia.
If I could I'd live on, but JHM has basically told me to f*** off and die and I see no other options than what they suggest.
Maya
I basically snapped, completely lost my mind, tore bleeding gauges in my arms and afflicted a lot more blunt trauma. Part of me urged me to go to my GP's office, which I did. There while waiting for an assistant I fainted due to some kind of overload and got rushed into a treatment room. My usual GP wasn't present, though, and they couldn't do much for me, so I tried to go back home again after spending half an hour just sitting there on a bench outside the medical building. Half-way through I didn't feel well again, and tried to get off my bike to rest for a bit. This failed and I collapsed on the sidewalk. Within minutes people were standing around me, offering assistance.
The police also arrived and they brought me back to the GP's office. There the only thing they could do was call the crisis center for psychological cases. They'll be talking with me later today. Won't help a bit, of course. I require medical assistance, but JHM has abandoned me.
Chances of finding another hospital willing & capable of helping me is virtually zero now. Tomorrow I have another appointment with my GP. I will then file a request for euthanasia.
If I could I'd live on, but JHM has basically told me to f*** off and die and I see no other options than what they suggest.
Maya
John Hopkins Medical Refused My Case
I just got the following email from my JHM coordinator:
Dear Ms. Posch,
"Per your request I forwarded your medical reports to 4 different Urologists to review your case this past week. Also, I was able to explain to them your exact medical needs from Johns Hopkins, regarding your surgery. They advised me that Johns Hopkins Hospital stopped doing sex reassignment surgeries.
Your appointment that was scheduled with a Urologist on the 27th of June was for a consultation to discuss your case and your needs from Johns Hopkins. After having all four Physicians review your medical records we determined that you should not travel to the States just for a consultation, since the surgery you seek is not available here at this time.
As far as your suicidal thoughts and concerns, we strongly advise you to seek help from the nearest facility in the Netherlands as soon as possible.
I apologize for any inconvenience these news may have caused you and I sincerely wish you and your loved ones the best.
Best Regards,
Maria Katerina Sakaria
International Care Coordinator
Europe and Latin America Divisions
Johns Hopkins Medicine International
601 N. Caroline Street, Ste 1080
Baltimore, MD 21287-0735, USA
Tel: +1 - 443-287-2480
Fax: +1 - 410-502-6395
E - mail: msakari1@jhmi.edu
hopkinsmedicine.org/international
---
I sent the following email in return:
---
But I'm not looking for sex reassignment surgery... I do not want anything artificial to be created or anything major to be changed...
I'm totally confused now... Is JHM now refusing to look at my case? If so, it'll mean that I have just been handed a death sentence, as JHM was my last hope. I'll have nowhere else to go, nowhere else to find the answers I need to go on...
I'm currently on strong sedatives which help, but it doesn't take away the fact that it's only a temporary solution, and that the real solution is to find help & treatment. If JHM refuses to offer this, then I'll be requesting euthanasia.
Maya
---
I later added the following
---
For reference: removal of testicles is not a sex-reassignment surgery.
For reference: having labia created where a vagina already exists is not sex-reassignment surgery.
I'm not asking to have anything changed, only a few practical things to be done which would improve my life as an intersexual person, but not change my sex in any way or form. What I'm asking for is not much more severe than many regular women receive quite often.
As an aside, the only reason why I can still type this so calmly is because I'm on strong sedatives (Xanax Retard 0.5 mg). If I wasn't, JHM would already have a fresh suicide case to dirty its record.
If JHM wisens up and decides that they can at least examine me and give me the answers about how this body of mine is put together things may turn out fine. If not, I'm determined to make this a PR nightmare for JHM.
To say that I'm disappointed in what is called the best hospital in the USA is a major understatement. This treatment is cruel and unusual.
Maya
Dear Ms. Posch,
"Per your request I forwarded your medical reports to 4 different Urologists to review your case this past week. Also, I was able to explain to them your exact medical needs from Johns Hopkins, regarding your surgery. They advised me that Johns Hopkins Hospital stopped doing sex reassignment surgeries.
Your appointment that was scheduled with a Urologist on the 27th of June was for a consultation to discuss your case and your needs from Johns Hopkins. After having all four Physicians review your medical records we determined that you should not travel to the States just for a consultation, since the surgery you seek is not available here at this time.
As far as your suicidal thoughts and concerns, we strongly advise you to seek help from the nearest facility in the Netherlands as soon as possible.
I apologize for any inconvenience these news may have caused you and I sincerely wish you and your loved ones the best.
Best Regards,
Maria Katerina Sakaria
International Care Coordinator
Europe and Latin America Divisions
Johns Hopkins Medicine International
601 N. Caroline Street, Ste 1080
Baltimore, MD 21287-0735, USA
Tel: +1 - 443-287-2480
Fax: +1 - 410-502-6395
E - mail: msakari1@jhmi.edu
hopkinsmedicine.org/international
---
I sent the following email in return:
---
But I'm not looking for sex reassignment surgery... I do not want anything artificial to be created or anything major to be changed...
I'm totally confused now... Is JHM now refusing to look at my case? If so, it'll mean that I have just been handed a death sentence, as JHM was my last hope. I'll have nowhere else to go, nowhere else to find the answers I need to go on...
I'm currently on strong sedatives which help, but it doesn't take away the fact that it's only a temporary solution, and that the real solution is to find help & treatment. If JHM refuses to offer this, then I'll be requesting euthanasia.
Maya
---
I later added the following
---
For reference: removal of testicles is not a sex-reassignment surgery.
For reference: having labia created where a vagina already exists is not sex-reassignment surgery.
I'm not asking to have anything changed, only a few practical things to be done which would improve my life as an intersexual person, but not change my sex in any way or form. What I'm asking for is not much more severe than many regular women receive quite often.
As an aside, the only reason why I can still type this so calmly is because I'm on strong sedatives (Xanax Retard 0.5 mg). If I wasn't, JHM would already have a fresh suicide case to dirty its record.
If JHM wisens up and decides that they can at least examine me and give me the answers about how this body of mine is put together things may turn out fine. If not, I'm determined to make this a PR nightmare for JHM.
To say that I'm disappointed in what is called the best hospital in the USA is a major understatement. This treatment is cruel and unusual.
Maya
Monday, 9 May 2011
More Discrimination Against Intersexuality
Last Friday I had my GP fax an updated request for full coverage of my electrolysis therapy (permanent hair removal). Today I got an email from my insurance company (Unive.nl, direct hatemail to info@unive.nl) informing me that they had rejected the request because they only fully cover transsexual cases and transsexuality is not intersexuality. This despite both being medical cases and there being similar reasons for having the facial hair removed permanently. This definitely reeks of a combination of laziness, incompetence and discrimination.
I have informed my GP of their decision and I have told my insurance company that I won't leave it at this as their decision doesn't make any sense. And besides, after them refusing to cover my medical expenses at John Hopkins Medical I really could use the 3,500+ Euro my insurance company owes me at this point. It could probably fund most if not all of the examinations and would really make my life a lot easier.
In other news, today I sent a snail-mail to the Dutch Queen, Beatrix. In it I describe my story in a mere two pages, as well as the reasons why I will be leaving this country as soon as possible. Having a homicidal healthcare system being one of the most important ones. I hope that the Queen will at least read my letter and consider my request to not let something like my story happen to anyone else who has the misfortune of being intersexual and born in the Netherlands.
Finally, my GP described me stronger sedatives than the valerian I was using before. She prescribed me Xanax Retard 0.5 mg. Active component is Alprazolam. Maximum usage duration is about 16 weeks, and it becomes addicting after two weeks. I'll have to slowly decrease the dosage once I'm in the US, or afterwards, in other words.
As a friend of mine summarized this sedative: "Xanax is benzodiazepine, as a sedative it is used off-label, but it's not a main sedative, it is Anxiolitic(anti anxiety) cure. But that's why you feel bad, it is altering your neurotransmitter levels so that's why your functions such as remembering focusing and thinking are affected by this, these side effects however should fade out after some time. Just make sure you take it exactly how they prescribed you to, because overdosing may lead to addiction and tolerance."
So far I took one pill, and I am still adjusting to it. The worst nausea is gone now and my memory seems to be adjusting as well. I'm still having a headache, though, as well as trouble with speaking. It takes a bit of effort to organize my thoughts sufficiently to speak properly, as well as to pronounce everything clearly. Beyond this I mostly feel tired and somewhat dazed. It's better than the sensations of severe anxiety I used to feel before.
I just shouldn't be driving a car in this state, as the documentation that came with the sedative mentioned the effect on my responses being equal to that of having a blood alcohol level of 0.8. I.e. the effect of having had a few drinks. It's definitely not an ideal solution, but if it keeps me from killing myself, then it's worth it. I still wish JHM finds a spot for me within a month, however.
Maya
I have informed my GP of their decision and I have told my insurance company that I won't leave it at this as their decision doesn't make any sense. And besides, after them refusing to cover my medical expenses at John Hopkins Medical I really could use the 3,500+ Euro my insurance company owes me at this point. It could probably fund most if not all of the examinations and would really make my life a lot easier.
In other news, today I sent a snail-mail to the Dutch Queen, Beatrix. In it I describe my story in a mere two pages, as well as the reasons why I will be leaving this country as soon as possible. Having a homicidal healthcare system being one of the most important ones. I hope that the Queen will at least read my letter and consider my request to not let something like my story happen to anyone else who has the misfortune of being intersexual and born in the Netherlands.
Finally, my GP described me stronger sedatives than the valerian I was using before. She prescribed me Xanax Retard 0.5 mg. Active component is Alprazolam. Maximum usage duration is about 16 weeks, and it becomes addicting after two weeks. I'll have to slowly decrease the dosage once I'm in the US, or afterwards, in other words.
As a friend of mine summarized this sedative: "Xanax is benzodiazepine, as a sedative it is used off-label, but it's not a main sedative, it is Anxiolitic(anti anxiety) cure. But that's why you feel bad, it is altering your neurotransmitter levels so that's why your functions such as remembering focusing and thinking are affected by this, these side effects however should fade out after some time. Just make sure you take it exactly how they prescribed you to, because overdosing may lead to addiction and tolerance."
So far I took one pill, and I am still adjusting to it. The worst nausea is gone now and my memory seems to be adjusting as well. I'm still having a headache, though, as well as trouble with speaking. It takes a bit of effort to organize my thoughts sufficiently to speak properly, as well as to pronounce everything clearly. Beyond this I mostly feel tired and somewhat dazed. It's better than the sensations of severe anxiety I used to feel before.
I just shouldn't be driving a car in this state, as the documentation that came with the sedative mentioned the effect on my responses being equal to that of having a blood alcohol level of 0.8. I.e. the effect of having had a few drinks. It's definitely not an ideal solution, but if it keeps me from killing myself, then it's worth it. I still wish JHM finds a spot for me within a month, however.
Maya
Saturday, 7 May 2011
Anxiety
Yesterday I asked my coordinator at John Hopkins Medical whether they had consulted someone experienced with post-traumatic stress disorder (PTSD) cases like mine. The email response was that she is trying to get an appointment for me at the psychology department of JHM for my PTSD. I guess that's a good thing. She does require proof that I have PTSD, for which I have asked my psychotherapist to write a letter.
Today I can't seem to stop crying either. There are so many uncertainties, about how much everything at JHM will cost me, whether I'll be able to pay it, what they'll look at all the relevant points and of course whether they'll be able to come up with a proper diagnosis. So far the answers to these questions are: unknown, probably not, nobody so far has got it right, and lying and deceiving seem to be favourite pastimes of medical specialists.
I'm suffering from severe anxiety attacks at the moment. All of these uncertainties are just too much to deal with or reason away. Having to wait for over 1.5 month just for the first appointment at JHM is absolute murder in my current situation. I didn't sign up for what feels like another batch of freshly mixed up torture.
I have no sympathy or understanding for having to wait. My patience wore thin about 2-3 years ago already. The stage I have been at for a while now is stubborn refusal to curl up and die.
Contrary to what people seem to think I'm not looking to become great buddies with the physicians at JHM, all I am begging them for is to treat the most urgent cases first. Considering the multitude of bruises and bloody scratches I currently have all over my body, not to mention the intense urges towards self-harm, if I was a physician I'd be declaring my own case urgent. The only alternative I see is to request stronger sedatives when I see my GP next Monday and live in a haze until June 27th.
That, or start drinking heavily. And I hate drinking.
Maya
Today I can't seem to stop crying either. There are so many uncertainties, about how much everything at JHM will cost me, whether I'll be able to pay it, what they'll look at all the relevant points and of course whether they'll be able to come up with a proper diagnosis. So far the answers to these questions are: unknown, probably not, nobody so far has got it right, and lying and deceiving seem to be favourite pastimes of medical specialists.
I'm suffering from severe anxiety attacks at the moment. All of these uncertainties are just too much to deal with or reason away. Having to wait for over 1.5 month just for the first appointment at JHM is absolute murder in my current situation. I didn't sign up for what feels like another batch of freshly mixed up torture.
I have no sympathy or understanding for having to wait. My patience wore thin about 2-3 years ago already. The stage I have been at for a while now is stubborn refusal to curl up and die.
Contrary to what people seem to think I'm not looking to become great buddies with the physicians at JHM, all I am begging them for is to treat the most urgent cases first. Considering the multitude of bruises and bloody scratches I currently have all over my body, not to mention the intense urges towards self-harm, if I was a physician I'd be declaring my own case urgent. The only alternative I see is to request stronger sedatives when I see my GP next Monday and live in a haze until June 27th.
That, or start drinking heavily. And I hate drinking.
Maya
Friday, 6 May 2011
Today's Email To John Hopkins Medical
Hello Maria,
First of all, here's the (translated) response from my insurance company as I received it by email over a month ago: http://mayaposch.blogspot.com/2011/03/response-from-insurance-company.html
As you can see they're being extremely difficult.
About the surgery options we discussed yesterday, as I mentioned, I'd want to opt to have the testicles removed, as I have no use for them and have to take blockers to break down the excess testosterone. As a sidenote they only produce about 25% of the testosterone you'd expect to see with a regular male.
Whether or not there is a (usable) vagina present will determine whether creating labia to open it up is an option.
Moving on, you mentioned in our first phone conversation that this case isn't worth killing myself over, but that's not true. Being IS has always been a problem for me, making it impossible for me to find my place in life and generally understand/accept myself. As one friend of mine put it, it's like having a robot for a body. There's no connection, no feeling. One of my best friends told me yesterday again that what I have never been able to is just live. And he's right. I feel dead inside and always have. Without significant change I will never find it worth it to live. So far I haven't.
When I finally realized what was wrong after 21 years and attempted to find help I experienced 6.5 years of the cold, distant and above all cruel Dutch 'healthcare' system. Psychologists and physicians alike have tortured me psychologically, resulting in my PTSD.
This leads to my current difficulties with John Hopkins Medical. Since I have never had good experiences with hospitals aside from those German private clinics there's a big part of me which insists that JHM can't be any different. This part is usually stronger than the part which is still hopeful that things will turn out fine. What I'm implying here is that the more JHM can prove itself to be completely different from those Dutch hospitals, the easier things will become for me. This mostly means taking away obstacles, allowing a smooth track towards receiving help. It's not my intention to use my PTSD as a bargaining chip or to extort services. All I'm concerned with here is that I do not have to keep fighting my PTSD all the time, and possibly kill myself. I hope you understand.
I assume that you have already consulted someone who has experience dealing with PTSD cases?
Thank you,
Maya
First of all, here's the (translated) response from my insurance company as I received it by email over a month ago: http://mayaposch.blogspot.com/2011/03/response-from-insurance-company.html
As you can see they're being extremely difficult.
About the surgery options we discussed yesterday, as I mentioned, I'd want to opt to have the testicles removed, as I have no use for them and have to take blockers to break down the excess testosterone. As a sidenote they only produce about 25% of the testosterone you'd expect to see with a regular male.
Whether or not there is a (usable) vagina present will determine whether creating labia to open it up is an option.
Moving on, you mentioned in our first phone conversation that this case isn't worth killing myself over, but that's not true. Being IS has always been a problem for me, making it impossible for me to find my place in life and generally understand/accept myself. As one friend of mine put it, it's like having a robot for a body. There's no connection, no feeling. One of my best friends told me yesterday again that what I have never been able to is just live. And he's right. I feel dead inside and always have. Without significant change I will never find it worth it to live. So far I haven't.
When I finally realized what was wrong after 21 years and attempted to find help I experienced 6.5 years of the cold, distant and above all cruel Dutch 'healthcare' system. Psychologists and physicians alike have tortured me psychologically, resulting in my PTSD.
This leads to my current difficulties with John Hopkins Medical. Since I have never had good experiences with hospitals aside from those German private clinics there's a big part of me which insists that JHM can't be any different. This part is usually stronger than the part which is still hopeful that things will turn out fine. What I'm implying here is that the more JHM can prove itself to be completely different from those Dutch hospitals, the easier things will become for me. This mostly means taking away obstacles, allowing a smooth track towards receiving help. It's not my intention to use my PTSD as a bargaining chip or to extort services. All I'm concerned with here is that I do not have to keep fighting my PTSD all the time, and possibly kill myself. I hope you understand.
I assume that you have already consulted someone who has experience dealing with PTSD cases?
Thank you,
Maya
Thursday, 5 May 2011
Response
Just got a phone call from my JHM coordinator. She tells me that they do not provide payment installments for international patients. She will however get me a cost estimate. She also asked me which surgeries I might be interested in. I mentioned castration and labia creation if a vagina is indeed present.
Maya
Maya
Stress Catching Up
During my last photoshoot with the photography student, last Tuesday, I for the first time felt so tired that we had to pause for a bit and take a walk outside. I felt dizzy, exhausted and very much ready to cry from sheer misery. After spending some time outside in the sunlight and with good company not to mention the consumption of some ice cream, I felt relatively fine again.
When that same day John Hopkins Medical announced the date for my appointment there (June 27th) without any further details other than payment information, my post-traumatic stress disorder kicked in while many bad memories about Dutch hospitals got dragged out of the closet. I spent the rest of that day just crying, crying and feeling absolutely terrible, like nobody gives a damn about me and I really, absolutely do not belong in this world, no matter how much I and others try to convince myself otherwise. It's all a lie.
The next morning I wrote the letter I posted before, appealing to JHM to please consider my past experiences while handling my case. I got a phone call from my coordinator which initially alleviated some of my fears and anxieties. I went to bed early, feeling kind of tired.
This morning I woke up from a deep sleep, feeling alright until reality hit me. Before I knew it my PTSD had taken control again and convinced me that JHM doesn't care about me and just wants to see my money. No money means no help. And JHM wants me to pay everything up-front, which I can not afford, so I'm screwed, so if I'm smart I'll just kill myself and get all this bullying from everyone around me over with.
I nearly did commit suicide this morning.
Instead I merely decorated my body with countless bruises and scratches, punched my pillows into formless shapes and nearly tore my pajamas to shreds. Then I basically crawled out of bed to write the letter I posted this morning. So far I haven't received an answer.
As I prepared for my beauty salon appointment for electrolysis later that day, doing the face cleaning I had skipped after waking up because I couldn't stop crying, and had finishing brushing my teeth, I noticed a smooth, bleeding spot on my tongue. Something I have never seen before. It doesn't really hurt, but it doesn't take a genius to realize that it's not a good sign. Generally the tongue is a very good indicator of one's general health as it's so tightly connected with the body's various systems.
While traveling to the appointment and at the beauty salon I felt drained. When I updated my beautician on my current situation, I started crying. It's quite unusual for me to cry that easily, and indicates severe fatigue.
At the moment I'm feeling cold chills, a headache, an upset stomach, dizziness and in general I don't feel too well. After this morning's PTSD attack subsided, I could still feel surges of panic and a general feeling anxiety. Right now I still feel it.
I'm absolutely drained at this point. I had not expected setting up an appointment with JHM would be this hard and trigger my PTSD so severely on two occasions so far that I had to forbid myself to commit suicide, yet nearly failed to convince myself. It are just scraps which are still holding me tied to this life. If I was religious, I'd be begging on my knees for JHM to please tell me that I can pay in installments, and that they'll not do anything else which might set off my PTSD like that again.
I need others to take some of the weight off my shoulders. It's too much. So much that it seems like my health is beginning to suffer as well. I haven't slept well in weeks and all I can feel about my current situation is bland despair. Nearly two months to go until my JHM appointment, and I'm not sure I'll last that long at this rate.
Please give me a break...
Maya
When that same day John Hopkins Medical announced the date for my appointment there (June 27th) without any further details other than payment information, my post-traumatic stress disorder kicked in while many bad memories about Dutch hospitals got dragged out of the closet. I spent the rest of that day just crying, crying and feeling absolutely terrible, like nobody gives a damn about me and I really, absolutely do not belong in this world, no matter how much I and others try to convince myself otherwise. It's all a lie.
The next morning I wrote the letter I posted before, appealing to JHM to please consider my past experiences while handling my case. I got a phone call from my coordinator which initially alleviated some of my fears and anxieties. I went to bed early, feeling kind of tired.
This morning I woke up from a deep sleep, feeling alright until reality hit me. Before I knew it my PTSD had taken control again and convinced me that JHM doesn't care about me and just wants to see my money. No money means no help. And JHM wants me to pay everything up-front, which I can not afford, so I'm screwed, so if I'm smart I'll just kill myself and get all this bullying from everyone around me over with.
I nearly did commit suicide this morning.
Instead I merely decorated my body with countless bruises and scratches, punched my pillows into formless shapes and nearly tore my pajamas to shreds. Then I basically crawled out of bed to write the letter I posted this morning. So far I haven't received an answer.
As I prepared for my beauty salon appointment for electrolysis later that day, doing the face cleaning I had skipped after waking up because I couldn't stop crying, and had finishing brushing my teeth, I noticed a smooth, bleeding spot on my tongue. Something I have never seen before. It doesn't really hurt, but it doesn't take a genius to realize that it's not a good sign. Generally the tongue is a very good indicator of one's general health as it's so tightly connected with the body's various systems.
While traveling to the appointment and at the beauty salon I felt drained. When I updated my beautician on my current situation, I started crying. It's quite unusual for me to cry that easily, and indicates severe fatigue.
At the moment I'm feeling cold chills, a headache, an upset stomach, dizziness and in general I don't feel too well. After this morning's PTSD attack subsided, I could still feel surges of panic and a general feeling anxiety. Right now I still feel it.
I'm absolutely drained at this point. I had not expected setting up an appointment with JHM would be this hard and trigger my PTSD so severely on two occasions so far that I had to forbid myself to commit suicide, yet nearly failed to convince myself. It are just scraps which are still holding me tied to this life. If I was religious, I'd be begging on my knees for JHM to please tell me that I can pay in installments, and that they'll not do anything else which might set off my PTSD like that again.
I need others to take some of the weight off my shoulders. It's too much. So much that it seems like my health is beginning to suffer as well. I haven't slept well in weeks and all I can feel about my current situation is bland despair. Nearly two months to go until my JHM appointment, and I'm not sure I'll last that long at this rate.
Please give me a break...
Maya
Begging John Hopkins Medical Again
Thanks for your phone call yesterday, but it wasn't enough, sadly.
Problem one is that I don't know how much money it'll cost me, as it'll be anywhere been $650 and infinite. This makes it impossible for me to know when I have begged enough money together.
Problem two is that I find it very hard to deal with this requirement to pay up front in order to receive help. I'm currently experiencing a PTSD attack because of it. I'm really struggling not to just take these unused MOAI anti-depressants I have lying around because it just hurts so much.
Isn't there anything you/JHM can do for me? Set some cap on the budget required? Payment installments? Paying for it out of some internal budget for research since my case is apparently so unique? Anything? I'm not sure I'll last more than a few days at this rate. It hurts so damn much.
I'd think that JHM would want to provide help first, and worry about money later considering its original mission when it was founded.
Please, I'm begging you and John Hopkins... please.. I'm beyond desperate
This is not a threat, but if nothing can be arranged, I will commit suicide. JHM is my last test to see whether life can be worth living. If it fails, I can only see it as definite proof that life doesn't want me and... anyway.
Thanks
Maya
Problem one is that I don't know how much money it'll cost me, as it'll be anywhere been $650 and infinite. This makes it impossible for me to know when I have begged enough money together.
Problem two is that I find it very hard to deal with this requirement to pay up front in order to receive help. I'm currently experiencing a PTSD attack because of it. I'm really struggling not to just take these unused MOAI anti-depressants I have lying around because it just hurts so much.
Isn't there anything you/JHM can do for me? Set some cap on the budget required? Payment installments? Paying for it out of some internal budget for research since my case is apparently so unique? Anything? I'm not sure I'll last more than a few days at this rate. It hurts so damn much.
I'd think that JHM would want to provide help first, and worry about money later considering its original mission when it was founded.
Please, I'm begging you and John Hopkins... please.. I'm beyond desperate
This is not a threat, but if nothing can be arranged, I will commit suicide. JHM is my last test to see whether life can be worth living. If it fails, I can only see it as definite proof that life doesn't want me and... anyway.
Thanks
Maya
Wednesday, 4 May 2011
Phone Call From Coordinator
I just got a phone call from my coordinator, Ms. Sakaria. She had read the letter I sent her, and she was quite understanding. She wanted to assure me that if there's a cancellation my appointment will get bumped up, plus that I'll be there for a full examination and everything, including surgery if necessary.
A few points:
A sticking point is that if I run out of money, they will stop everything, so I am thinking of starting a donation drive of some kind to get enough money together. The first appointment costs me over $650 already according to the form I got yesterday.
I'll have to figure out how to get an open plane ticket, or at least a convenient/cheap way to have a flexible return ticket.
I'll need to have some place to stay. Hotels are expensive. If I'm staying in the US for a day or ten as my coordinator estimated, that would be thousands of dollars just for a hotel room.
First point is tough. Second point is easy enough to figure out with some help. The third point depends mostly on whether I can find someone in/near Baltimore where I can crash for a week or two :)
Maya
A few points:
A sticking point is that if I run out of money, they will stop everything, so I am thinking of starting a donation drive of some kind to get enough money together. The first appointment costs me over $650 already according to the form I got yesterday.
I'll have to figure out how to get an open plane ticket, or at least a convenient/cheap way to have a flexible return ticket.
I'll need to have some place to stay. Hotels are expensive. If I'm staying in the US for a day or ten as my coordinator estimated, that would be thousands of dollars just for a hotel room.
First point is tough. Second point is easy enough to figure out with some help. The third point depends mostly on whether I can find someone in/near Baltimore where I can crash for a week or two :)
Maya
My Appeal To John Hopkins Medical
I just sent this letter to my current coordinator at John Hopkins Medical, International Patient Services, Ms. Maria Katerina Sakaria. It's an appeal to have JHM reconsider their approach to my case, in light of the post-traumatic stress disorder I have suffered from six years of Dutch medical healthcare. What I desire is to have JHM treat me like a human being who has gone through Hell and back and not just a number.
---
Dear Ms. Sakaria,
I'm writing this appeal to beg you and John Hopkins Medical to please reconsider the approach taken towards my case. Reason for this is yesterday's appointment confirmation which was provided and stated in such a way that it managed to severely trigger my medical post-traumatic stress disorder.
Back in early 2005 I first realized what was wrong with my body, finding out that I am intersexual. At first I was relieved, because I thought that soon my life would start making sense. Fast-forward 2.5 years, spent at the VU Medical Center in Amsterdam as well as an half year at some psychologist, and filled with doctors and psychologists trying to convince me that I had to be transsexual, while refusing to perform any examinations or tests.
On December 21st, 2007 a German private clinic concluded based on an MRI scan that I am a hermaphrodite, which was a big relief to me, as now I finally knew how my body is put together. Or so I thought, as the Dutch medical specialists refused to accept this diagnosis, instead telling me that there was nothing special visible on the MRI. Two more Dutch MRIs were made, once by accident, once at my request at a Dutch private clinic. I have heard various interpretations from Dutch radiologists on what the black tube visible on each scan might be, from air in the rectum, to air next to the rectum, to simple dismissal.
For the past six years now I have been invited to one appointment with medical specialists after another, each of them disappointing. None of them giving me answers. I have had to beg to have a second tissue tested with a mosaic test. No one wanted to look at the structure which can be felt underneath the skin at the location of where a vagina would be. Every single clinical symptom regarding the (probably female) prostate have been ignored. The fact that I have a completely female skeleton and build was ignored. The fact that I can not get male orgasms and have never been able to ejaculate like a male has been ignored.
At no point have Dutch healthcare personnel listened to me, or been interested in solving my case. This has resulted in me suffering severe PTSD, primarily from the way the Dutch healthcare personnel have treated me, but worsened by having been raped and sexually assaulted a few years ago. I have received no help or treatment with this. There are self-help groups for rape victims, but my case is far more complex than theirs. I, and friends for me, have contacted various psychologists who offer EMDR therapy to help me deal with the PTSD, but none want to take on the case as they find it's too complex.
In 2009 and early this year I have attempted suicide. Last night nearly became my third attempt as the appointment confirmation email managed to trigger my PTSD in the most horrible way possible.
The only way for me to deal with this PTSD is to get medical recognition and treatment for my intersex condition. I'm not looking to be merely seen by yet another medical specialist. I need the assurance that I will be truly helped and this medical stand-off resolved so that I can finally start building up my life. My IS condition is something which has controlled and made my life into a hell from a very early age, and only by learning what it is so that I can accept can I put that all behind me.
For this reason I beg John Hopkins to truly consider the human, personal side of my case in its handling of it. My emotional state is beyond fragile and the disappointment of yesterday's message was already nearly enough to push me over the edge.
I want to live. I want to live so dearly. There's nothing more I want more than make all my dreams about making wonderful software and hardware and robotics which will improve the lives of others a reality. What is holding me back is this PTSD and this unknown body which always gets in the way of just living.
I dislike having to ask others for help, but in this particular case I need John Hopkins Medical and all the skilled people there to help me. I do not have a lot of money, but I have friends who can give and lend me what is required for paying JHM for rendered services. All I ask from John Hopkins is to treat me like a human being which has gone through Hell and back and is merely looking for a human face on the help she receives as well as strong support to lean against after having fought for so long for a bit of attention.
I will be posting this message as an open letter on my blog as well.
Thank you for your attention.
Maya Posch
www.mayaposch.com
---
Dear Ms. Sakaria,
I'm writing this appeal to beg you and John Hopkins Medical to please reconsider the approach taken towards my case. Reason for this is yesterday's appointment confirmation which was provided and stated in such a way that it managed to severely trigger my medical post-traumatic stress disorder.
Back in early 2005 I first realized what was wrong with my body, finding out that I am intersexual. At first I was relieved, because I thought that soon my life would start making sense. Fast-forward 2.5 years, spent at the VU Medical Center in Amsterdam as well as an half year at some psychologist, and filled with doctors and psychologists trying to convince me that I had to be transsexual, while refusing to perform any examinations or tests.
On December 21st, 2007 a German private clinic concluded based on an MRI scan that I am a hermaphrodite, which was a big relief to me, as now I finally knew how my body is put together. Or so I thought, as the Dutch medical specialists refused to accept this diagnosis, instead telling me that there was nothing special visible on the MRI. Two more Dutch MRIs were made, once by accident, once at my request at a Dutch private clinic. I have heard various interpretations from Dutch radiologists on what the black tube visible on each scan might be, from air in the rectum, to air next to the rectum, to simple dismissal.
For the past six years now I have been invited to one appointment with medical specialists after another, each of them disappointing. None of them giving me answers. I have had to beg to have a second tissue tested with a mosaic test. No one wanted to look at the structure which can be felt underneath the skin at the location of where a vagina would be. Every single clinical symptom regarding the (probably female) prostate have been ignored. The fact that I have a completely female skeleton and build was ignored. The fact that I can not get male orgasms and have never been able to ejaculate like a male has been ignored.
At no point have Dutch healthcare personnel listened to me, or been interested in solving my case. This has resulted in me suffering severe PTSD, primarily from the way the Dutch healthcare personnel have treated me, but worsened by having been raped and sexually assaulted a few years ago. I have received no help or treatment with this. There are self-help groups for rape victims, but my case is far more complex than theirs. I, and friends for me, have contacted various psychologists who offer EMDR therapy to help me deal with the PTSD, but none want to take on the case as they find it's too complex.
In 2009 and early this year I have attempted suicide. Last night nearly became my third attempt as the appointment confirmation email managed to trigger my PTSD in the most horrible way possible.
The only way for me to deal with this PTSD is to get medical recognition and treatment for my intersex condition. I'm not looking to be merely seen by yet another medical specialist. I need the assurance that I will be truly helped and this medical stand-off resolved so that I can finally start building up my life. My IS condition is something which has controlled and made my life into a hell from a very early age, and only by learning what it is so that I can accept can I put that all behind me.
For this reason I beg John Hopkins to truly consider the human, personal side of my case in its handling of it. My emotional state is beyond fragile and the disappointment of yesterday's message was already nearly enough to push me over the edge.
I want to live. I want to live so dearly. There's nothing more I want more than make all my dreams about making wonderful software and hardware and robotics which will improve the lives of others a reality. What is holding me back is this PTSD and this unknown body which always gets in the way of just living.
I dislike having to ask others for help, but in this particular case I need John Hopkins Medical and all the skilled people there to help me. I do not have a lot of money, but I have friends who can give and lend me what is required for paying JHM for rendered services. All I ask from John Hopkins is to treat me like a human being which has gone through Hell and back and is merely looking for a human face on the help she receives as well as strong support to lean against after having fought for so long for a bit of attention.
I will be posting this message as an open letter on my blog as well.
Thank you for your attention.
Maya Posch
www.mayaposch.com
Sunday, 1 May 2011
Autoparagynaecophilia Explained
Today during an IRC discussion in one of the many channels I frequent, one of the people in the group, James, noticed the word used to describe my condition by one Dutch physician at the AMC hospital (Amsterdam): autoparagynaecophilia. Having knowledge of both Latin and Greek, he thought it'd be an interesting puzzle to figure out what it really means. The following is a copy & paste from the text file he sent me earlier:
** AUTOPARAGYNAECOPHILIA **
Autoparagynaecophilia is a Greek neologism created from several parts:
auto - Of or relating to the self. From the Greek 'autos' meaning 'self'
para - Meaning beyond or beside. Has acquired the meaning 'abnormal' or 'defective' in medical contexts.
gynaeco - of or relating to female/woman
philia - Meaning friendship or affinity, has acquired the meaning 'tending toward' or 'attraction to' in medical contexts.
paraphilia - Meaning 'abnormal attraction to'. Medical neolgism synthesizing para and philia
---
A related term, autogynephilia has been used by some psychologists (notably Ray Blanchard) to describe "a man's paraphilic tendency to be sexually aroused by the thought or image of himself as a woman." in male-to-female transsexuals [1]. This characterisation is controversial, however. [2]
In this light, autoparagynaecophilia could be interpreted as a synthesis of 'autogynephilia' with the more mainstream term 'paraphilia' to emphasize the deviant nature of this phenomena.
Alternately, and more literally, autoparagnyaecophilia could be read to mean "(tending toward) abnormal attraction to one's own female anatomy". Absent any professional consensus on a definition however, the term is effectively open to interpretation by the reader.
[1] Blanchard, R. (1989). The concept of autogynephilia and the typology of male gender dysphoria. The Journal of Nervous and Mental Disease, 177 616-623.
[2] Moser, Charles (July 2009). "Autogynephilia in Women". Journal of Homosexuality 56 (5): 539--547. (available: http://home.netcom.com/%7Edocx2/AGF.htm)
Maya
** AUTOPARAGYNAECOPHILIA **
Autoparagynaecophilia is a Greek neologism created from several parts:
auto - Of or relating to the self. From the Greek 'autos' meaning 'self'
para - Meaning beyond or beside. Has acquired the meaning 'abnormal' or 'defective' in medical contexts.
gynaeco - of or relating to female/woman
philia - Meaning friendship or affinity, has acquired the meaning 'tending toward' or 'attraction to' in medical contexts.
paraphilia - Meaning 'abnormal attraction to'. Medical neolgism synthesizing para and philia
---
A related term, autogynephilia has been used by some psychologists (notably Ray Blanchard) to describe "a man's paraphilic tendency to be sexually aroused by the thought or image of himself as a woman." in male-to-female transsexuals [1]. This characterisation is controversial, however. [2]
In this light, autoparagynaecophilia could be interpreted as a synthesis of 'autogynephilia' with the more mainstream term 'paraphilia' to emphasize the deviant nature of this phenomena.
Alternately, and more literally, autoparagnyaecophilia could be read to mean "(tending toward) abnormal attraction to one's own female anatomy". Absent any professional consensus on a definition however, the term is effectively open to interpretation by the reader.
[1] Blanchard, R. (1989). The concept of autogynephilia and the typology of male gender dysphoria. The Journal of Nervous and Mental Disease, 177 616-623.
[2] Moser, Charles (July 2009). "Autogynephilia in Women". Journal of Homosexuality 56 (5): 539--547. (available: http://home.netcom.com/%7Edocx2/AGF.htm)
Maya
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