Archive for August, 2007

Ok, yesteerday was a real nightmare. The doctor who attached the spacers did it wrong. He could not fit them in between the right teeth, so he just put them on 2 places (I asked about that, but they said it is ok). My dentist was furious when she found out, I think the young doctor is going to be scolded really bad.

She tried to put the spacers in in the right places, but it did not work. She tried for about 15 minutes (ouwie!) and then gave up. It seems that my palate/upper jaw/upper teeth are in a really bad shape. It seems that they are too deep in the gums and too close together, which is good because I wont get paradentosis and cavities easily, but really bad for any orthodontic work. After some thinking and consulting with the chief dentist, they decided that they need to “make” space between the teeth a little more agressively. As I found out, a little more agressive aproach means taking a drill and drilling a space in beween them. Man, it hurt. It took them about 30 minutes to do this and then try to force the Hyrax appliance on, but it still did not work for some reason. So I was released and have another appointment on tuesday. As I already have the space made, I really hope they will just put it on and not torture me anymore.

Some things I found out:

1) I am getting food stuck in between my teeth for the first time in my life – it is VERY annoying, lol. I find myself brushing a lot after each food.

2) When your dentists says “it won’t hurt”, scream for anesthesia or run for the hills πŸ˜‰

3) If you have a serious phobia from drills like I have, it is not a pretty experience.

4) I am very very very very very very… err VERY brave that I did not cry or do something embarassing. Can I get my “lil brave soldier” badge now? πŸ™‚

5) After the shock wears off, you tend to forget things quickly.

Anyway, do not take me seriously. It was bad, but it was bearable and I am a rare lil sample of really serious tiny upper jaw condition with low pain tresshold and serious phobia of dentists, drills and needles. If I survived it, you will too πŸ˜‰


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Lazy, sleepy

I was up to 2 or 3 am last night. I suspect the later, but am not sure, lol πŸ˜‰

I got up at 11am when my alarm started ringing and crawled to my pc (well, bf’s PC *cough, cough*). Then I had breakfeast lunch, finished my chocolate from last night and started browsing the net. The teeth almost do not hurt anymore, which is great, but I am somehow worried about tomorrow (read: I am scared as hell, but pretend I am not). The nurse was implying it will hurt and when a nurse implies something, it means it is usually worse than you expect. Anyone noticed what a big coward I am? πŸ˜‰ Anyway, I hope that it will be bearable and will be over soon. I have a serious phobia from dentists and especially the drill thanks to many very unpleasant experiences with various dentists, but again, if I get over this, I am one step closer to easier nasal breathing and nicer teeth, so… *hides under blankets in the corner*

Anyway, I am lazy today. Reading this article: Mirror, Mirror, doing some homework and feeling sleepy. I know I should work on my stories a little, but just can not force myself, so I am just going to get a bath just now and head to the dinner with a friend.

Anyway, have a rabbid. They will take over the world anyway πŸ˜‰


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I got my tooth spacers yesterday. They look like tiny blue rings and are placed between my teeth to make some space for the metal bands of Hyrax appliance that should be atached on thursday.

Most websites say that they do not hurt. Well… they do not hurt too much.

I got them installed by another dentist, because my doctor comes to the hospital only once a week and we need to have everything prepared as soon as possible in case that I got another surgery date very soon. He inserted these with some sort of tweezers. It felt like getting something stuck in between my teeth and he kind of scratched my gums as he did it. I did not feel any pain (except for getting scratched by mistake which really hurt) till about 3-4 hours later when the teeth started moving a little. About 10 hours later, I was sitting by my computer and growling at everyone who was foolish enough to try to talk to me. πŸ˜‰

When I got up today (at 11 am, I love being jobless for a while) , my gums were seriously swollen and my teeth hurt a lot. I panicked first, but it got better in few hours. I am suspecting the scratches to cause it. Also today’s pain is just a little annoying, nothing really major. I am still facing some difficulties with chewing, so I switched to softer food (especially Miso soup with wakame, negi and toufu which I bought the ingredients for and cooked for dinner).

As for tomorrow, I am planning a lot of sleep in the morning and a dinner in a chinese restaurant with my best friend in the evening. I am really hoping that my teeth will be a little less sensitive tomorrow, because if not, I will be forced to have just a soup instead of a lovely duck. *drool, drool*

I might or might not add photos this weekend. I took some pics of the spacers, but somehow, I consider them quite gross, lol πŸ˜‰

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Ok, I should go and have Hyrax application attached to my upper jaw. As usually (I am almost getting used to it), the surgery on monday the 27th has been postponed, because somebody forgot about something.

It seems that somebody forgot to call me a week ago and invite me for some preparation that I should have before they can apply the Hyrax. Lovely. Really great, especially because I will hopefully get the job with Disney from 1st October and need to be 100% ok. Their proposed date was the end of September and if that happens, I am seriously scr**ed. Then the dentist found out that they actually might be able to do it on the 3rd September, which would be really great, but they are not sure. So I won’t know until monday, when they also start the preparations for applying the Hyrax on the 30th (a real and hopefully stable date, yay!!!).

Now, excuse me, I am going to sulk in a dark corner.

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It does happen very often. Actually, there usually isn’t a month without somebody stopping me on the street and saying “Oh, sorry to stop you, but I see that you have a serious thyroid problem. You should visit a doctor immediately.”

Usually, I just smile and shortly explain that I happen to have a genetic disease which gives me this look and that I am like this from the start. The truth is, that I feel like saying “No, I am just a fattie with bulging eyes, now leave me alone, thank you very much” sometimes. I wonder if I really snap and will do it one day.

I know that these people mean it well, but it can get on my nerves really. It is the same as that some people consider me retarded when they meet me for the first time. Different = sick or retarded, that is how many people think. And to be honest, I think I used this viewpoint few times as well.

This is probably how the nature works. If an animal looks ill or behaves differently, the rest of the herd is very vary of it. Actually, they usually stay away from such one and surprisingly, it usually (read always) ends by the animal getting eaten by a predator, who is just waiting fro this to happen. You might notice that predators usually do not attack healthy animals – they target the weak, ill and outcasted, because it means that they won’t be able to fight back so well and that the herd won’t come and help them.

In the old times, people who were too weak and would be a nuisance for the family/clan/society were left alone or disposed of. Ill children usually died, deformed children used to be killed by their mothers or fathers as if they weren’t even human. Even in the 19th century, most syndromal children would not survive a year after their birth, most of them not even few weeks. These days, we survive – and unfortunately, the old natural instincts are working against us.

Missing cheekbones? Uh… weird…

Bulging eyes? Must be some disease, that is not normal.

Undeveloped mid face or dare I say, a mouth breather? Oh, man, they must be retarded, just look at the open mouth and the beaked nose!

A scar from ear to ear? Jesus, what is that? Did they have some brain surgery? Is that catchy?

Not to mention that some syndromal children suffer from webbed toes, merged fingers, missing chin or ears or even need to have a tracheotomy to even be able to breathe.

As for the instincts, the first look at us says “Something weird, might be catchy, not a good partner for mating”. And in a way, they are right – we are not the best genetical material. (Actually, I decided that I will never have children, so I won’t pass this to them.) It takes some will and sometimes also knowledge that such syndromes exist, to have people want to find out what is inside of us (no, I do not mean my appendix… go away, leave me alone!). Anyway, it is usually worth it, if you get past the fact that we look somewhat weird.

This is one of the reasons, why I would like to start a non-profit organization in my country, that would serve as information center not only for families with syndromal children, but also would provide information to the whole society. Maybe, if most of people knew about the existence and effects of syndromal diseases, they would not stop us at the streets and ask us about our thyroids.

By the way, mine is 100% ok, thank you very much πŸ˜‰

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Today was a really really tiring day. I am starting to be stressed because of the surgery and all the things I need to have done before it.

I spent few hours in the employment office in our town, where I had to register because I will be jobless for a while. Thanks to the nice ladies there, I am registered by now and the office takes care of my basic insurance payments, which would normally be my employer’s duty (they take a health tax from your wages and pay it with that, adding some money as well). I am planning to be jobless till the end of September and get well enough for job hunting by then. My ace in a sleeve is Living mobile/Disney where I attended an interview and wrote an entry game design project, which they liked, so I am hoping to get hired by September. πŸ™‚

I am also seeing an improvement in my writers block that lasted for over 2 years and became really bad when I worked in the telecommunication company as a product manageress and was really stressed by work and switching between the job in Prague and taking care of my grandmother 100km from Prague every weekend. After leaving my last job, which felt almost like a release from prison in the end, things started to improve and I am getting ideas for stories again. I was having some even before, but could not bring myself to write anything. By now, I am planning to start 3 stories – one should be a vampire story starting at the WW2 in German Lebensborn program and continuing to the modern days. The other one is a comedy about a girl finding out that the world is full of mythical creatures, that she is one of them and that she has to pick her new form – just that things are a little more complicated, especially if you find out that your mother is a Weresabertooth tigress and that the fairy world is even more bureaucratic than the mundane one. The third one should be collaboration with my best friend and we would love to write down a personal comedy story that we were thinking out and playing with for more than 2 years – two horrible nasty old ladies living on the French countryside. πŸ˜‰

I am also considering finishing my novel soon. It has just 500 pages for too long for my taste and the story is too good to drop. Not to mention that I am just too in love with some of my characters.

Oh and by the way, have a photo of my grandmother’s flower πŸ™‚

gran-flower.jpg gran-flower2.jpg

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I wont write a long essay about Crouzon syndrome here. I am not an expert and a lot has been written on the subject on other sites. For example http://www.craniofacialcenter.com/book/craniosynostosis/cranio_8.htm or http://crouzonsupport.org/faq.html have great resources.

What I want to write about is my experience with it. I was diagnosed with the syndrome as a baby and one of the country’s top doctors performed a skull surgery on me. It went well and I could grow almost normally. I say almost, because it is really difficult to live as a “different” child. It does not matter if you are different because you are mentally challenged, have a syndromal disease or were left with burn scars – to people, you are different and are watched as something that does never really fit in. I am not talking about family and friends who are used to you and can see more than just the outside, I am talking about the pointing and whispering strangers, bullying classmates and laughing idiots on the street. If you are born like me, you will always be different, no matter how much you try to blend with the crowd.

My childhood was really hard because of that and I can imagine it is about the same for most, if not all, children suffering from any syndromal disease.

Supportive family is a must, but there comes another problem: Overly supportive family. My family was like that; overly supportive about the wrong thing. Both my mother and brother have Crouzon syndrome as well, so the β€œvisage issue” was rarely brought up. We were pretending that we do not care how we look like and sneered at just the mention of plastic surgery. It took a long time till I was able to accept my chance, to accept that plastic together with reconstructive surgery could make me look better and make my life easier.

What brought me to this decision was mostly the cold shower that life gave me after I quit my university and started searching for a nice job. The job interviews tended to have the same pattern – they liked my CV, they liked my cover letter, they liked what I told them on phone… and after a meeting in person, I got a polite letter that they chose somebody more skilled, more fit for the position, whatever. If that happened in few ocassions, well ok, job hunting is difficult and good jobs have high competition going on, but 99 percent of the interviews? Even the interview for a japanese company where I was the only candidate who could speak Japanese?

I realised that looks are more important in this society than I ever thought before. It is nice and safe to hide behind the “real beauty lies within”, but the real life is not like that. If you look “weird” they are likely to think that you must be mentally challenged. Funny, that thing, because I have quite high IQ and speak 4 languages (even though my Japanese is more on the passive side).

After a long research, I decided I will go for my chance to lead a little more normal life. So I will have my first surgery at the 27th August, it is palate widening surgery which will expand my narrow arched palate by 1 mm a day and close my crossbite. After that, I will undergo dental treatment which will bring my teeth to an ideal position for my next surgery – le fort I jaw advancement, where they cut my upper jaw and move it forward by about 8 mm. My last surgery should involve cheekbone implants to create my missing cheekbones and take care of my chin and nose. Hopefully, that will be all.

This is not a pursuit of vanity. Just a dream about not being the outsider anymore.


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