Wednesday, 30 March 2011

PTSD Panic

Things at John Hopkins Medical are gradually moving ahead. As of yesterday they have all of the medical reports and MRI scans. The former have been sent off to a translation company for translation. The PDF documents they copied from my website (irregularities and report analysis) are already in English. Once the translations are done (probably by the end of next week), the MRI scans will be send off to radiology and the translated reports and the JHM radiology reports will be send to the endocrinologist and psychiatrist in charge of my case.

After that it'll take supposedly another two weeks for the Medical Second Opinion to be finished. The MSO result should then be known by around April 22nd or during the week following it. It's still a long wait, and if there's one thing I find very hard to deal with it has to be waiting on something as crucial as this. The past few days I have noticed that I sleep very poorly, that I feel highly agitated and restless during the day and that I generally feel unhappy and out of place.

Probably thanks to my PTSD I experience a constant sensation of near-panic during every waking moment, which I can only somewhat suppress by taking large doses of valerian root extract sedative. I guess that JHM really is my last shot at life, because I can not possibly imagine getting kicked out there like I got kicked out of every hospital so far, and moving on to yet another hospital. Heck, if JHM can't help me, I doubt anyone can, with them being the best US hospital and among the best in the world.

Which of course then brings me to the eternal question of why I can't just give up on finding those answers. My answer to that is that giving up on finding those answers and committing suicide is virtually the same thing. Both mean giving up on life, or at least a significant part of it. Either way I'd be giving up on my body, in a physical or practical sense. An additional answer is that emotionally I have never been able to deal with not having these answers, not when I was about five years old, not when I hit puberty, and it still plagues me to this very day.

Not understanding one's body is akin to not having a body.


Thursday, 24 March 2011

JHM: Translation Time

First of all I would like to remark on the aftermath of my insurance company refusing to pay for my medical help at John Hopkins Medical. That Monday after I had left their office after receiving the bad news, my contact person at Unive emailed my psychotherapist, saying that he might want to contact me to help me deal with it.

My therapist replied with a message informing Unive that it seems to him like he got asked to clean up the mess Unive made. He pointed out that if Unive thinks that I need help, then they should provide it. If they take the wrong decision and things happen because of it, then it's their responsibility. He finished the message by noting that he didn't understand Unive's logic in arriving at the conclusion not to pay for my medical costs at JHM, as it seems very unwise to him.

Anyway, it's always nice to have someone confirm that you are not crazy, and that it's those 'others' who should do a reality check. Meanwhile things are JHM are progressing slowly. I got a coordinator assigned, one Beenu T. Gupta, who will now take care of communication in my case. Yesterday I got an email from him in which he discussed the steps which still have to be taken. He sent me a few PDFs as attachments which contained the documents I had scanned in, as well as the summaries in my case I have listed on my website.

To be honest I have never had any interest for those documents from medical people at all, so to see JHM actually including them as part of their evaluation material is both refreshing and confidence inspiring. Gupta's questions included whether the report on kariotype testing was included in one of these PDFs, which was the case, as well as the latest physical examination report, which is more or less the case, as quite a few people at various hospitals have touched me over the past few years. Those were included too.

The MRI reports were the last items on the list, which I told him are included in the MRI viewer program which comes with the MRI scan files I provided. He was talking about him having received one MRI scan, while there should be three, which I pointed out. He did mention that he had received the 2009 scan, which is the one made at the Erasmus MC hospital in Rotterdam, and which is of good quality, so it's no matter of only that one gets used. The German scan is relatively blurry in comparison, and the one taken later at the OLVG hospital in Amsterdam is more limited, although it might be useful too as another imaging method was used.

These Dutch reports will all have to be translated, which will add to the $1,350 I was quoted for the MSO itself. As I do not know of a medical translator who can do it cheaply, I'll just leave it to the JHM to arrange it and pay whatever they ask. I trust that it can't be that unreasonable. I was quoted 2 days to get the price quote and 5-7 working days for the translation itself. Hopefully by the end of next week everything will be translated, then, and the MSO can get started.

I keep having to remind myself that things are moving ahead much faster than with any previous hospital, but it's so hard to wait at this stage. What did reassure me somewhat, though, was one line in Gupta's email, in which he stated that the physicians involved in my case (an endocrinologist and a psychiatrist) might decide to either give a remote consult or wish to see me in person. This seems to hint at that they do seem to take things seriously, as they wouldn't require me to fly over for a mere chat. It seems to hint at the possibility of further research and examinations.

In other news, I finally got an email response from Anne Fausto-Sterlin, Nancy Duke Lewis Professor of Biology and Gender Studies at Brown university, in which she basically couldn't tell me anything other than what I already knew from others.

"I am sorry to have taken so long to get back to you. i consulted with various clinicians I know (I am neither a clinician nor a physician) and they all seemed to feel that the best clinic in Europe is in Amsterdam, the one I presume you have already contacted. They also feel there is nothing better or different in the US. The only  other suggestion was for a group in Germany: Dr. Olaf Hiort in Luebeck, Germany, runs the leading intersex program in Europe.

"Sorry not to be of more help."

The Amsterdam clinic is the VUMC which got me my PTSD and where this person supposedly very knowledgeable about intersexuality (Dr. Cohen-Kettenis) refused to even look at my case because 'her team' had decided I couldn't possibly be intersexual. The German hospital mentioned I have contacted a few years ago, but they cut off contact; I never got past their bloody secretary. The doctor who was supposed to contact me never did, and the secretary ignored me after a few emails.

There is nothing negative I can say about JHM yet. Even if people at IS 'support' organizations never refer to them, I'd say that they're A-OK in my book at this point. In my experience people at IS organizations are useless and those who supposedly specialize in IS are insensitive, uncaring jerks who are only good at traumatizing people with IS while those need so much care and attention as their experiences have made them generally quite fragile. It's something I have noticed with many IS people I have met over the years, and I think it's scandalous that those who specialize in treating people with IS could treat them this horribly. It's beyond sickening.

Even if this JHM experience ends up bankrupting me, it will have done more good for me than any hospital so far. Except maybe those German clinics who confirmed that I'm IS, and where I was treated with respect instead of as a piece of filthy garbage. Why do you reckon I have so low self-esteem, and do not believe there is a place for me in this world? It's all thanks to the excellent care by Dutch, Belgian and UK hospitals and clinics. They're a scourge to humanity.


Wednesday, 23 March 2011

John Hopkins Medical Update

Yesterday a good friend of mine, who has been trying to find help for me for years, sent me the money I needed to pay for the second opinion (MSO) at John Hopkins Medical. I was able to transfer the money that same day to JHM and things are finally moving forward, with the message from JHM that they'll be assigning a coordinator to my case who'll communicate with the doctors there and also with me about the status of my case.

A little snag is the need to have all reports I sent translated from Dutch to English, which is going to cost some extra money as it has to be done by certified medical translators, which I am not. I reckon it'll cost me another few hundred dollar. Today I should hear their cost estimate. Hopefully they can start on the translation today so that they can get started on the case properly this week.

I'm probably going to need a heck of a lot more money the coming time, though, assuming that JHM recognizes the need for more research. A friend put up an appeal on the website:

I do not wish to rely fully on donations, of course. I got about two weeks until this MSO is supposed to be finished. Any money I can make through projects and such would help me immensily in financing the upcoming medical matters. These projects include this Nyanko CMS for which I have made a fancy new administration panel in C++/Qt and which I hope to finish debugging this week. There's also the TileWars game which will go on sale next month on Steam. Further I'm working on an Android game which might be fun too, and which I could theoretically finish within two weeks time.

If my writings got me some money too, I might be tempted to work on them, but since that's not the case, they'll have to wait :) At this point it seems like this Firefox add-on I made will be a lot more popular:


Monday, 21 March 2011

Response From Insurance Company

The following is the translation into English of the email I received from the medical specialist at my insurance company (

"Procedurally a request has to be filed at the team foreign relations in Eindhoven which includes:
1) A referral to the US including reasoning by a Dutch gynaecologist in which is described why there is being referred, what the expectation of this consultation in the US will contribute medically to what is currently known.
2) a request from the specialist in the US describing the exact diagnostics and a quote on the costs.

"With this data the medical team will judge whether the request fits within the health insurance terms, considering effectiveness and medical necessity.
If there comes an agreement, only up to the Dutch fees can be paid. Experience with the US has shown that the fees in these places are about 5 times higher than in the Netherlands and that there will thus be a significant financial gap for the client.
Payments prior to the US are never made either, thus client will have to finance this too.

"A pragmatic solution within the existing health insurance for the client is to make an appointment with the UZ Gent, a well-known institute on this area. This hospital is covered by a contract and all she would need is a referral from her GP.

"There are no other options."

I guess this specialist didn't hear that this UZ Gent in Belgium is planning to make me wait until August before I even get to go there for an intake. Based on previous experiences, it will then take until far into next year before any examinations are performed and/or I'm kicked out because I'm a too difficult case to diagnose. This route only seems to lead to my demise, so I refuse to even consider it.

The only option now seems to be to borrow $1,500 from somewhere and/or someone's credit card so that at least this second opinion at John Hopkins can be carried out.

I'm very worried about the effects this has on my emotional stability. My PTSD is having a great time at the moment, with everything it knows about how the world works being confirmed, the wrongness of my existence rubbed in and the option of suicide offered to me by this voice inside my head so incredibly hard to ignore.

Please... help me...


Saturday, 19 March 2011

A Case Of The Mondays

Yesterday brought a few updates in the John Hopkins Medical case: my insurance company (Unive) informed me that the medical advisor/doctor who had been in charge of my case had fallen ill early this week and had been replaced on Thursday. Together with my contact person at the local Unive branch office we decided to ask this new advisor to approve at least the MSO at JHM and see how things go from there. Later that day I got an update informing me that this advisor would inform me about his decision on Monday.

So either the decision will be that they approve, JHM gets the budget they asked for and I will know the result of the MSO by the end of the month, or Unive doesn't approve and I'll have to borrow cash from people. You could call me fixated, but it has never happened before to me that I encountered nice people at a hospital, who acted professionally and of whom I got the idea that I could trust them. Well, aside from the people at that first German private clinic, I guess. I still dislike how the Dutch medical specialists have and are treating them, talking about them like they don't know what they are doing.

Naturally I'm feeling quite apprehensive about Monday, and if I was religious I would be praying for things to finally take a positive turn. Life hasn't been very kind to me so far. The past months all I have been able to do is work like crazy on projects, the past weeks I have spent 10+ hours a day working including on weekends. It seems like the only thing I can do right now to improve my life.

I have also been working on rewriting the chapters of my semi-autobiographic novel In Between and Neither. So far I have rewritten the first three chapters, which you can find here:

Chapter 1 has been left virtually unchanged, but 2 and 3 have been completely rewritten, adding details and character development which were completely missing from the original. I hope to soon rewrite 4 and 5 as well and continue with more chapters, but it all depends on my mood. With me feeling so apprehensive and uncertain about my future (immediate, intermediate and distant), I can't say I really am in the mood. Maybe if I get good news on Monday. I know I'm keeping my fingers crossed...


Monday, 14 March 2011

It All Comes Down To Money

When I reported on John Hopkins Medical's interest in my case, things seemed to be going along swimmingly. Then it hit a snag: my insurance company which can't seem to make up its mind about whether or not they want to pay for any examinations and such performed at JHM.

I sent my insurance company an email yesterday, informing them that their dallying is causing my PTSD to get triggered again, leading to very unpleasant PTSD attacks, as I prefer to call them. I made it clear that they need to make up their mind and take care of the payment preferably within a week.

As for the costs involved, for this Medical Second Opinion it is US$800 for the report plus one physician with US$550 added for every additional physician required. I have ran up far higher costs with countless hospital visits here in the Netherlands already, and these didn't result in anything useful.

My psychotherapist also sent an email in response to yesterday's email to me and my insurance company, in which he firmly supported the points I made in my email. This should be helpful in convincing my insurance company (Unive) to hurry up as there is no point in delaying this. As my therapist pointed out in his email, he can happily bill Unive for countless more hours during the next years, or I can have things taken care of within this year at JHM. Seems like an easy choice, right?

As for my experiences with JHM so far, they have been exceedingly polite in their email correspondence, are very communicative and responsive and basically I have not a single complaint about them at this point. Many times they have said that they consider this to be a very complicated case, something no Dutch hospital so far has admitted, let alone considered it motivation to put more people on it, as JHM has mentioned, or even elevate it to the Medical Directors.

That they do want to see money up-front isn't that weird, that's what this world runs on after all. I just hope that Unive understands soon that letting me proceed with JHM is also to their (financial) benefit.


Friday, 11 March 2011

Nightmares, Real And Imagined

Last night I had an interesting dream which was part nightmare, part therapy. It featured my former housemate, with me being at his place again for some reason (staying the night there with my mother or so, though I never saw her in the dream). The place had been completely remodelled, supposedly thanks to his new dominating girl friend, with most parts of the house an unfinished mess, with the rest looking like they came straight off a flyer of some shop. Extensions had been added to the house, but they were unfinished too, and looked like a cave system.

Moments after waking up I realized that this dream was a kind of mixture between experiences with this housemate and my father. The first weeks after I came here at my mom's place I told her everything about what had happened between me and this housemate, and we were both almost shocked at how eerily similar it was to my mom's experience with my father and his new wife. The same sense of betrayal, the bullying to get one chased away. The differences are truly superficial.

It wasn't so weird, then, that the housemate I saw in my dream was a bit of a cross with my father. He had balded a lot more, with very short, grey hair, and was wearing glasses, similar to the type my father wore last times I saw him. This scene started off with him making all kinds of demands and basically complaining a lot about me. When he sat down at the table in the living room I then started my own tirade, telling him that he should look at his own life first, that I was going to be rich and famous, while he would remain a nobody.

In a sense I guess my former housemate and father are very similar to me. They both rejected me, and both caused me a lot of emotional pain. Neither of them I ever wish to see again. When my father called me last month after hearing about my suicide attempt he truly didn't seem to understand the situation. He even kept using my old first name, which really is hurtful. It was kind of fun to draw the parallels between what had happened to me and what he and his wife have done to my mother, though. I doubt he picked up on it, though. Like so many males, both my father and former housemate are the emotionally immature types, which is the primary reason why they get wrapped so easily around the finger of those evil, manipulating women.

Anyway, my tirade in this dream felt like a kind of therapy. Lashing out like that is something I have wanted to do for so long, rather than be a victim. The latter is what I have been made into by this whole society, with me being completely helpless when it came to the medical and healthcare system. At no point have they shown interested in acting out their profession, or shown any evidence of being human.

When I was talking about my experiences with a friend a few days ago he agreed wholeheartedly that it would probably be a required part of my PTSD treatment to leave this country, as in essence this entire country has been and still is a battlefield where I have spent so many years. Looking around all I can see are the mutilated corpses of my dreams, innocence and trust in others. I can move around within this country of death, but only by leaving it can I truly escape its horrors.

It may sound dramatic, but looking back I honestly can't tell that this country has given me anything worth staying for. I do not think that I could be happy if I stayed in this country. There's also the realization that I do not have any friends in this country and am unlikely to make any considering how those who aren't rude and selfish have still so been affected by this society that they can't do much about it either.

I wish more people would face the truth that the Netherlands is a dying country.Economically, financially, socially and culturally we have sold out or are in the process of doing so. Its society is so devoid of emotion and humanity that it can be called 'emotionally handicapped', as coined by the Dutch stand-up comedian group Purper years ago. As a Belgian writer pointed out earlier this week, the Netherland is also a master of conformity, with society as a whole enforcing this choking blanket of conformity which destroys any chance at debate or progressive change.

The Netherlands is a country without hope, without dreams. As long as I still have mine I do not think it wise for me to stay here any longer than necessary. Now to see which other country wants me the most :)


Sunday, 6 March 2011

John Hopkins Medical International

I promised I wouldn't write again until a miracle occurred, and I think a minor one has occurred. After weeks of bombarding a certain useless Middlesex clinic in the UK with emails and phone calls and nagging people at intersexuality support organizations without anyone bothering to actually be helpful or respond at all, a single email a few weeks ago to John Hopkins Medical seems to have done the trick.

Unlike the UZ Gent hospital, Dutch hospitals and clinics in general, and the utterly useless and completely unreachable Middlesex clinic with their ghostly Dr Conway and Sarah Creighton, John Hopkins Medical International (JHMI) responded within a reasonable amount of time on my initial email explaining my situation, have elevated my case to the Medical Directors because they admitted that it's a complicated case, have assigned a physician and the only thing it comes down to at this point is whether JHMI and my insurance company (Unive) can come to agree on the financial part.

Yesterday morning I sent JHMI the whole batch of medical reports and scans, as well as their Medical Second Opinion (MSO) form. For 'current diagnosis' I put 'various/undefined', as it's the basic truth: hermaphrodite/transsexual/autoparagynaecophilia/transgender/crazy are some diagnoses which I have heard during the past six years. Who is right? I don't know. What I do know is that I won't be satisfied with simply yet another opinion from JHMI.

What I expect from them is to look at the available material, realize that the relevant medical questions such as those regarding the clinical symptoms (genetic, prostate functioning/structure, presence (proto-)vagina, etc.) have not or only barely been investigated, and that a proper examination should be carried out. If they are as professional as they appear to be so far, then this is the course I expect them to follow. The only matter then is where I'll be examined, whether they'll find a hospital in the EU, or that I will be flying over to Maryland.

Starting Monday I should learn more about what I can expect.