Friday, 29 August 2008


I'll keep this one brief as it's 10.45 PM right now and my train departs tomorrow at 7.38 AM. I'll be visiting friend R. Originally I was also going to visit another friend who lives nearby as well, but she suddenly had to go somewhere. I noticed yet again that such a cancellation has a profound negative effect on my mood.

So yeah... I went to the KNO doctor yesterday, he didn't see any symptoms of a sinus infection, so he scheduled me for an X-ray next Tuesday. I was supposed to see him again on September 11th, yet then something unexpected happened.

Yesterday I received a letter from the Erasmus MC. With both Pieter and I expecting it to be little more than just a left-over from the mess with the MRI analysis there, I opened it and saw in the subject line 'MRI', reading it again, my brain registered the word 'appointment' and after reading it and the letter a few more times, I realized that it was for an appointment for an MRI scan on September 11th at the Erasmus MC. To say that we felt surprised would be a serious understatement.

So finally, the KNO doctor didn't want to prescribe me anything to help with the serious headaches I'm suffering from, leaving me only with the painkillers from Pieter, which aren't really meant against headache, but do help against inflammation. The appointment with the KNO doctor is on the 18th now.

Pieter was also going to call a surgeon in Hilversum today, but forgot about it in the heat of battle (troubleshooting). Ah well. I really need to go to bed now. Tomorrow I've got about an hour to prepare everything, from breakfast, to putting some music on the MP3 player, brushing teeth and putting on makeup and... well, I'll be back late on Saturday so don't expect an update until Sunday.

Also, it's now less than a week to my birthday...


Thursday, 28 August 2008

Mashed Up Mash-Up~

Welcome to the odd world called 'human physiology'. Last Monday I went to the local hospital to see a lung doctor, who quickly determined that what I've been suffering from for the past months is a sinus infection, which explains the headaches, excess slime in especially my throat and a general feeling of being miserable. No, he didn't give me anything against it yet. He referred me to another doctor (a throat, nose, ear doctor, or KNO as they call it here), who I'll be visiting today.

Now, yesterday I spent most of the day lying on bed and feeling absolutely miserable. When Pieter came home, he had me take one of his prescription painkillers after dinner and the results were downright amazing. The headache kind of vanished and still is just a distant feeling (one pill works for about 10-12 hours), my head felt much more clear, I just started laughing at silly things and I've slept without any interruptions for the first time in weeks, waking up actually feeling refreshed. Also, while I'm still depressed at this point, I feel that I can actually deal with it, that it doesn't have to control me.

To think that such a silly infection has worsened my situation for the past months without anyone realizing it. I really hope that the doctor will give me something good against this infection today, as I can't exactly go on borrowing Pieter's painkillers *grin*

So yeah... I met this nice guy (let's call him 'R' for now) who lives over an hour away from me and who cares about my troubles, giving me web development work and has even called to the German clinic and the VUMC last week for me.

Last week I got an email from the VUMC, particularly Ms Janssen of the complaint commission, who informed me that they still hadn't received the MRI images from Germany. According to R it can take weeks for mail between Germany and the Netherlands to arrive, and he arranged that if by Wednesday this week they would not have received the images, he'd drive to Germany to pick up the images himself. Such a nice guy :)

Anyway, Monday this week I got an email from Ms Janssen informing me that they had received the MRI images and that they had been sent to the radiologist with an 'urgent' notice attached to it. Let's see whether they can analyse the images within 2 weeks this time. And please let it be the right images... it's getting more than just annoying at this point, turning into a perfect example of Murphy's Law: anything that can go wrong, will go wrong. Just splendid.

Less nice is that I met this nice girl a short while ago with whom I had some really nice talks, with a lot of chemistry happening between the two of us. Now last Monday she was supposed to come and visit me. I talked with her for the last time around 5 PM when she was still at school, she was supposed to arrive here around 8 PM, but by 11 PM she still hadn't arrived. Now it's Thursday and there's no trace from her. She didn't call or message me, she doesn't appear to have been online since Monday and me being stupid I didn't ask her for her phone number. All I got is her address, which may or may not be correct. It was at least misspelled when she gave it to me.

If anyone from Groningen (the city) reads this, and might be willing to look at this issue, perhaps drop by the address, or knows who lives there, please contact me. I know that meeting people via the internet is an unreliable way to gain contacts and people can suddenly vanish (been there, experienced it all), but in this case I'm feeling rather uneasy about it.

So yeah, lots of stuff happening. I've found myself toying with the idea of participating in RoboCup 2009 in Austria next year. If my AI works out the way I think it will and I can come up with the resources to build 2 to 4 bodies, I might just participate. Alternatively there's the Simulation RoboCup, which involves 3D models instead of real robots. It's fun stuff to work on at any rate :)


Wednesday, 20 August 2008

Forget It...

Yesterday I finally got the phone call from the Erasmus MC with yet another doctor (Sandbrink). The following conversion I'd definitely file under 'incredibly ridiculous'. It started when the doctor who called informed me that the re-evaluation of the MRI images had resulted in the same conclusion as before, at this news I already passed the phone on to Pieter, who fortunately had taken a day off.

After talking to the doctor for a bit, Pieter started asking whether he was absolutely sure that they had analysed the correct images (the second set) and not the old, incorrect ones, since Sandbrink had used the word 're-evaluation', which seemed to hint at looking at the same images twice. At this question the doctor answered that he didn't know for sure, but that he'd contact the radiologist right away and call us back.

So when the phone rang again after a short while, Pieter answered it and Sandbrink admitted that indeed, the old images had been analysed again and apologized profoundly for this. He said that he'd talk with the radiologist in person the next day, have the people responsible for this mix-up reprimanded, and try to get some results before the end of this week.

Part of me is happy that at least it wasn't a negative result based on the new set, another part is horrified that I have to wait more, another skeptical of those promises and above all there is a sense of crushing blandness.

Later yesterday Pieter had to pick up some tools by a friend and I opted to go along with him. Once there I learned that this friend and his wife had decided to get a child without me hearing even a sliver of news about it when she showed me an ultra-sound image of the unborn child. I must say that I didn't feel a thing at this news or when looking at the ultra-sound image. The only moment when I was there that I actually felt emotion was when I told about my experiences today and particularly about the thoughts of suicide at hearing what I initially thought was bad news.

Then as Pieter and I were driving back home again, I really collapsed, and I still haven't recovered yet. I haven't felt this incredibly... bland, I guess, as well as negative in a while. I really don't give anything about anyone or anything right now. I don't want to participate in any kind of social rituals or anything. I wish everything would just go away... I'm merely trapped in some kind of nightmare from which I desperately need to wake up... even if suicide is the only way...


Wednesday, 13 August 2008

Sceptical But Hopeful~

I'm feeling a bit tired as it's approaching midnight, but I'll try to give a summary of yesterday and today. Suffice it to say that it's been an eventful two days.

Yesterday I first went to have some blood taken for allergy tests, for my appointment with the lung doctor later this month. On my way back home I noticed how out of things I was as I nearly got hit by a car due to my own carelessness. Having made it back home, I ate a late breakfast and napped until around noon. I then waited until 1.30 PM to make the phone call to the UZ Gent in Belgium.

Instead of enjoying a waiting list-free medical world, I instead was told that the endocrinologist who had asked me to make an appointment with (Guy T'Sjoen) wouldn't have a free spot until December 1st. After this news I decided to see whether the urologist would be available sooner, but I didn't even get that far. As I was being redirected on the phone I ended up at the central point where a man asked me what he could do for me. As I was trying to explain that I wanted to be connected with the department for the urologist, he addressed me as 'sir'.

That was enough to make me just put down the phone and give into desperation yet again. The first half hour I cried uncontrollably and had to actively steer my thoughts away from suicide. I so wanted to put something sharp into abdomen, or disfigure or cut off my genitals, or anything else that would hurt a lot. At some point the pain becomes so much that every fiber in one's body begs for death with only the tiny voice of reason way in the back of one's mind there to keep one from ending it all.

I remained in bed until Pieter came home from work. By then I had calmed down a bit, and when I saw that T'Sjoen had responded to the email I had sent right after my phone call to the UZ Gent in which he told me that he might be able to adjust his agenda if I could get a quick appointment with the urologist, I felt somewhat positive again.

Today I had Pieter call for me as I didn't feel I was up to it anymore. First he called the Erasmus MC and was told there that the doctor who was supposed to email me when more was known about the MRI analysis was on vacation for another 2.5 weeks. Now I'll get a phone call from another doctor next week Tuesday with hopefully some results.

At the VUMC things were a bit more hectic. The German clinic didn't want to send the MRI images to the VUMC due to some German privacy laws or so. They had sent a fax to the VUMC telling them this, but this fax wasn't received. The VUMC sent a reminder to the clinic and called today. Meanwhile Pieter called the woman at the complaint commission who handles my case and asked for details. He was told to call the German clinic as well.

I don't know the exact details of how things went, but according to Pieter the German clinic will now send the MRI images to the VUMC and hopefully they'll receive them by next week. I hope I get some quick results from that, as well as the Erasmus. I'm keeping my fingers crossed.


Tuesday, 12 August 2008

The Final Frontier~

Lately I'm not feeling exactly stellar. I seem to be having something like a flu for at least a month or so and the past few days it's really getting apparent. Three days of a continuous headache, feeling nauseous, coughing, loss of appetite and being short of breath, not to mention feeling really tired. Today I went to my physician to see what she'd say about it. She of course thought that the stress I'm under plays a role in this sickness. Tomorrow I've got a blood test (for allergies and such) waiting and I have to make three appointments with medical specialists. One of them is for my lungs. The others...

Last week Wednesday I decided to send an email to the UZ Gent, a big hospital in Belgium. Today I got an email back from one of the specialists there, who asked me to make an appointment with him and a colleague. They're an endocrinologist and an urologist respectively. I'll try to make these appointments on the same day, so that there's no unnecessary traveling involved. Pieter will be taking a day off to go with me, for which I'm truly grateful :)

So does this mean that I have abandoned the Dutch hospitals? I wouldn't go that far, but I would be lying if I were to say that I really trust them. It's taken them well over three and half years already to grudgingly beginning to accept that I might possibly be right. But I don't care about proving that I'm right to them. I just want it all to be over, not having to fight a dozen battles every day, battles with not only hospitals, but also with myself. It's time to end this lunatic struggle.

Naturally, going to a Belgian hospital confronts me with another one of my big problems, namely the financial side. The appointments I'll be making tomorrow won't be paid for by my insurance company. Nor will they pay for any tests or surgery. Not unless through some miracle they approve of me receiving treatment in a foreign country, a miracle which might take one of the Dutch hospitals to not only confirm that I was right, but also approve of me getting a treatment in Belgium.

At any rate it doesn't appear that I will be able to make it financially on my own, not even if I were to work every day like crazy on web development projects for paying customers. Medical specialists are expensive. Surgery is even more expensive. I could be looking at a bill of a few thousand Euro the coming months, the money for which I'd have to cough up myself. Hopefully I can either borrow some money for it, or the aforementioned miracle takes place. The former seems more likely at this point.

And before you point at the donation buttons all over this blog and my main site, I have received less than 50 Euro since last year through them, so you can imagine that I won't rely on donations as a means of saving my precious behind in these taxing times :)

This morning I also burdened my credit card with over 150 Euro by ordering new hormones for another 3 months. I've now got a supply of 4 months. Hopefully this is the last time I ever have to order these medicines myself, not to mention cough up the money for it.

In other news, my esteemed Canadian colleague Trevor and I have decided to concentrate our game development efforts on a single game to finish it ASAP. The game in question is called 'The Pink Particle' and is a kind of platformer/adventure/puzzle game. Imagine something like Mario Galaxy combined with Mario Party with of course multi-player options. I'll add the listing for the game to the site this week. Expected release date is in a few months (so before the end of the year at least :P ).

Not so nice is that a friend who has provided me with a lot of web development work in the past has vanished from the face of the earth, leaving me without the money he still owed me, and also without a reliable source of new projects. This means I'll have to look for new sources of such projects. Perhaps I could start focusing more on desktop/server programming now as well, since that's what I enjoy doing more.


Sunday, 3 August 2008


Looking back at recent events, I think it's clear that myself and others are putting me under too much stress to make it possible for me to function 'normally'.

Yesterday, shortly after getting up, I started feeling sick and very short of breath, which worsened during the next 1-2 hours until I could hardly breathe anymore. Pieter made an appointment for me with a physician (my own GP doesn't work on weekends) and after sitting there in the waiting room for what seemed like an hour, the physician admitted us.

While I was explaining my condition to her, I began to feel increasingly dizzy, with a tingling sensation in my hands which began spreading over the rest of my body. I felt like I didn't have enough air in my lungs to speak more than 2-3 words at a time, and was preparing to find myself fainting. This didn't happen, however.

The physician checked my lungs but couldn't find anything unusual. After ruling out some common causes like asthma, I was send to the ER of the local hospital. Once there my condition had already somewhat improved and by the time a doctor came to me, he suggested that seeing my current condition it was probably a case of hyperventilating, but that I should come back if it'd happen again.

I really hope I won't have to come back, because feeling like you're just fighting to get some air for hours on end is an everything but pleasant experience. Thing is, though, that my case of apparent hyperventilating is probably caused by the stress I find myself under on a daily basis, with a definite increase after last Tuesday. Everything feels just as pointless again as it did before.

Often I have wondered what it'd be like to hear 'voices' in one's head, and recently I have come to realize that I've been experiencing them for a while now. They're the lingering 'thoughts', or echos which keep bombarding me with the same or similar suggestions and/or try to reason with me in a highly emotional matter. However, they're not 'me' and can not make me do anything until I let them take control, which I refuse. It's still a fight I'm doomed to lose at this rate.

What else did I do this weekend... a while ago already the living room got a makeover, with a new floor, fresh layer of paint and everything, plus a new TV. Yesterday a new cabinet was added to the whole. It being a piece of furniture you have to assemble yourself, it took Pieter and me until earlier today to finish assembling it. Of course we took some time out to eat, sleep and watch movies ;)

In a sense the fact that I'm so different makes me kind of happy because with all my experiences taken into account, there's nothing I'd want to be less than a human...