Sunday, 22 November 2009

Dream: Kidnapped

I was kidnapped. I found myself inside a hall which reminded of one used for PE. My kidnappers were two males, one a Hispanic-looking guy who I recalled having lured me into this with his charms. The other was a more non-descript Caucasian male. As I was sitting there, the Hispanic guy, who was standing with the other guy on the tribunes a few meters above me, continued talking to me about the dangers of a 'pussy cat walking alone' and such things.

I withdrew somewhat into myself after a short while, focusing on a way to escape. Maybe if I could take out one of those guys, perhaps then I would have a chance, show the others (I felt there were more) that things wouldn't go the way they expected. Maybe it would scare them off. So when both guys approached me I got up and attacked the Hispanic guy. I seem to recall my hands being bound, so I was using kicks only. At this point I seemed to drift out of my body, seeing myself fight against the two guys from a growing distance.

A young woman was talking about how I was missing and how I should be found quickly. An older woman agreed with her. I then saw an older man painting over some text on a low white wooden fence in front of a low building which I felt had to be the one I was in. The man was sighing about how things always ended up like this. I then found myself sucked into the door opening of the building.

I was sitting on a chair behind a small table which I thought felt similar to the old schooldesk my mom used to own. In front of me on the table were lying a fork and a knife, the first on the left, the other on the right. I appeared to be sitting in a hallway, with a door to my left, just behind me, and one to my left in front of me, plus another one in front of me to my right. I couldn't see things very clearly, it was as though I was seeing things through a kind of fog, a sort of tunnel vision.

The Hispanic guy came walking into my field of vision from my left. Without knowing why, I grabbed the knife with my right hand, closed my left hand over it and waited for him to come close enough. Yet when I could have stabbed him, I just couldn't find the motivation or energy or anything to actually go through with it. He kept walking around the table and I kept following him, every time unable to move the knife even an inch closer to him. Then finally he was standing to my right and, using his sweater between his hand, he took the knife away from me.

I found myself giggling in a very much crazy manner. Then when the knife was taken away, I kind of collapsed, sliding down on my chair and withdrawing into myself.


Monday, 16 November 2009

Putting On The Pressure

Got an email back from today telling me the following:

"Your message = Would it be possible to have a mosaic test performed at your clinic? It involves the suspicion of XX/XY mosaicism or similar.

Dear Mrs. Posch,

Yes, it is possible to perform mosaic testing at our laboratory.

Dependent on the patients phenotype and clinical findings we can offer different techniques to check mosaicism (e.g. molecular genetic (PCR), molecularcytogenetic (FISH), cytogenetic).

Please send fresh EDTA- and Heparinblood samples. Give relevant reports and accurate description of the clinical findings.

Costs: e.g. XX/XY mosaicism (PCR) 130EUR

With best regards

Birgit Becker"

Thanks to Jan for providing me with the initial links which put me on the trail of this laboratory. I'll discuss matters with my GP on Monday, by which time the issue with the UMCG may have progress or derailed some more as well.

Today my therapist Engel Vrouwe agreed to calling the UMCG first, but also told me that he would like see my visit the UMCG once more, during with appointment he would like to be present as well. I sent an email to the UMCG and will hear back from them when they have a date for an appointment. This appointment will be with professor Weijmar Schultz, the radiologist and geneticist. I do not expect anything from it, but at the very least it should clear matters for a legal approach.

In other news, things are most definitely so-so for me. The current events are very tough on my both mentally as well as physically. The past few days my body temperature has hovered between 37.6C (mild fever) to 36.1C (normal is .5). I felt absolutely horrible either time. Today the problem was more emotional, though. Mentally I feel absolutely drained, finding it hard to see anything as worth living for, especially with the huge amount of medical and legal junk I'll have to work my way through the coming months if not years. Makes the easy way out look very attractive at times.


Wednesday, 11 November 2009

Finding One's Way

Stumbled over something unexpected today, namely the fact that having a mosaic test performed outside a hospital appears to be virtually impossible here in the Netherlands. I have contacted the ZKN ( which regulates private clinics in this country to ask them on this issue, but the expectation is that I'll have to go to another country to have this test performed. This is a minor setback. Worse is the difficulty in finding out where to go then. I'm still waiting on an American friend to get back to me on this. He would ask some people he knows who may know what the best place is for me to have this test performed.

Meanwhile I still find it horrible that the hospitals in this country refuse to perform this test for me, even if they officially have to do it. I do however not feel like pursuing a legal route to force them or to exact revenge at this point in time. It's not in my benefit right now and there are more productive things to focus.

So at any rate I would love any help people may be able to give me with regard to finding a place where I can have this mosaic test performed, hopefully somewhere in Europe, though I wouldn't say no to an all-expenses-paid trip to the US :)


Tuesday, 10 November 2009

End Of An Era

Today marks the end of an era. Five years of attempts to get basic tests performed at various hospitals here in the Netherlands. Five years of trying to get people to listen to me. No more.

In the letter I got on Friday from the UMCG they suggested that I might go there again to discuss matters. This week the question was whether or not I would go to another appointment there. Considering how the UMCG has not executed both items they had promised (mosaic test and MRI discussion), not offering further research or testing and thus not answering my request for help, I can see no reason to go back there.

Yesterday night it further became clear to me how much these recent events with the UMCG have affected me. While discussing the above question with Pieter we somewhat got into an argument on whether or not to go to the UMCG again, near the end of which I pretty much ran downstairs to my room and just stood there for a while, feeling absolutely miserable. After some time I decided to lie down on my bed and stayed there until Pieter came downstairs to check on me and inform me that the tea was ready. What happened next still frightens me.

As usual Pieter managed to bring a smile to my face, yet then I felt the tears making their way out again. Thinking that I was just going to cry a bit to let out the tension I didn't resist. At first that was all I did, but then I began to feel such a rage inside me that I began to kick and punch around me, at one point coming very close to attacking Pieter. I then cowered against the wall right next to my bed, followed by punching and clawing at the wall as though I was trying to find a way inside it.

I have never experienced anything like this before. Only afterwards did I notice that I had injured my right shoulder pretty painfully, not to mention my sore hands and arms. Pieter also got hit a few times, including a kick to his shin. He chose to let me calm down on my own, though, instead of holding me down. I have commented before on how I felt like there was some kind of darkness inside. This last experience was more akin to a demon. I was aware of my actions, but I don't think I could have stopped myself except with extreme effort. I really hope I don't ever have to experience it again.

Considering the intense emotions dealing with Dutch hospitals seems to unleash in me I have decided together with my GP whom I spoke to today, that it would not be a wise decision to have further contact with the UMCG. I have sent an email informing the UMCG of this decision.

The next step will be to find a private clinic here in the Netherlands or elsewhere which can perform the mosaic test for me, and hopefully do something with the MRI images as well. A friend in the US is asking some people he knows, one of them works in a national health laboratory and has contacts in the Netherlands, of what they deem to be the proper strategy here, and what the best place for the required tests would be.

I have no idea how much it is going to cost me, nor exactly where I'll get the money from, but I do know that this way the required tests can be performed in a few months time, finally giving me the answers I seek. I'm so angry that those retarded hospitals have cost me five years of my life I'll never get back, with nothing to show for it except this stupid PTSD. I want nothing more right now than to move on with productive things instead of seeking the confrontation with people who hate me anyway.


Saturday, 7 November 2009

It Isn't Paranoia If They're Really After You

What I realized last night is that:

The UMCG hasn't performed a proper mosaic test. They merely replicated the chromosome test the Prisma hospital in Enschede carried out in late 2007, about two years ago. They also checked the presence of the Y chromosome in blood and nothing else. The 'test' done at the UMCG thus learns us nothing new. The UMCG presented the results of this single test as definitive, yet they only tested one tissue. This is very weird.

Together with the broken promise from the UMCG to discuss the MRI interpretation mystery with the German clinics which got pushed back and now completely discarded, it appears that the UMCG is little different from the Erasmus MC and VUMC. They'll get their last chance next week, but otherwise I can yet again assume that I got tricked again into believing some medical experts actually wanted to help me.

Why in the world does this keep happening to me? And why does the media only seem to care this little bit? I'd feel this is an issue a number of talk shows and such on national TV would love to pounce on and get it on the air.

I don't have a friggin' idea what to do next if the UMCG turns out to be equally unreliable as previous hospitals. Why does everyone who can help me feel the need to lie and cheat me out of precious time? :(

I'm so tired...


Friday, 6 November 2009

Testing Weirdness

Today I received the genetic test results from the UMCG hospital by snail mail. The conclusion was 46, XY, with the SRY gene on the Y chromosome. A normal male genotype, basically. They also concluded that the MRI images showed the front side of the rectum and not a vagina.

Strange is that the UMCG first said they would discuss with the German clinics on the wildly differing MRI interpretations, later shifted this to after the genetic tests and now says I'll have to do it myself; contact the German clinics and ask them. Also strange is that the mosaic test was supposed to be carried out in stages; if the first test on blood didn't show anything unusual it would be expanded to other tissues. Nothing was said about this in the letter I received today.

In short this all means that matters haven't progressed at all. There hasn't been any discussion on the MRI images and thus there is no common conclusion between all the teams of radiologists who have looked at them so far. Questionable is also the genetic testing because it has only been performed on blood so far.

Naturally this is a serious disappointment for me, and I'm absolutely not sure yet how things will progress from here. The frustrating part is that if I trust the UMCG's conclusion there is absolutely no genetical reason for the fact that I have a female phenotype, that there are no explanations or answers still, and that it may take many more years before there finally comes some clarity in this mystifying case. If ever.

In other news, the new nVidia GTX275 videocard I got is driving me slightly nuts because it's really noisy at load while running Folding at Home, irking me even when I'm just working in front of the computer, let alone while trying to sleep. A new cooler would solve this issue, but it's a sixty Euro or so I do not have exactly lying around at the moment.

Then again, I need a huge source of distraction to keep myself from doing something horrible to my body the coming weeks, so working like possessed on my work seems like a reasonable proposition. Especially with the money I'll earn from it, which would allow me to buy new videocard coolers.


Sunday, 1 November 2009

The Possibility Of Hope

Last Wednesday at the beauty/hairdresser salon where I undergo my electrolysis treatments I showed the Grazia magazine my article was published in and to my surprise the one customer (an older woman) who was there for a haircut already had heard about me. I guess the power of word of mouth shouldn't be underestimated :) This woman was really nice to me about it. It was a nice experience.

Forgive me for not writing much more. I lack the energy for pretty much anything lately. I sincerely hope that I will receive the results of the genetic tests next week and that they're useful. I hope it'll allow me to recover soon, as in my current state I'm absolutely worthless. Yesterday I managed to completely embarrass myself in front of a neighbour when she came to pick up a package which was delivered at our place.

Swimming today was kind of fun, though, got to talk a lot with nice people.

My next post will be either after I receive news from the UMCG, or never again. Until then.