My doctor did an amazing thing. He (and his team) operated my eye area trough my mouth, so I have no visible scars.

I will post a little more and also some photos when I can, I am extremely busy because of my new job and my granny’s temporarily worsened health condition.

But I will keep you updated, I promise.

I would include my photos during the surgery phase, childhood photos and also medical tips in cooperation with doctors. It would not be a thick one, but I think such a book could help many people and provide information to anybody who is interested.

Of course, this book would have to be sold either online as an ebook or printed (not sure how really, probably some on demand publishing service? I do not know any UK/US based publisher who would be interested, do you?), because I just can not spend a lot of time writing  and polishing it completely for free. Books are not blogs

What do you think?

Anyway, here, as a special absolutely free reward for your time, have an axolotl newt picture stolen from the web

Do you feel special now?

Characteristics often associated with Crouzon Syndrome:

• Flattened back and top of head – can not be repaired, even though I had a skull surgery as a 2 years old baby (when we count surgeries, this one would be number 0 – the lifesaving one.)
• Flattened forehead – I would love to have a normal forehead, but I probably will not get a forehead surgery. In my case, it would require some sort of implant or added material to forehead bones and I am not sure if I am vain enough to go through the pain and potencial risc for them. I would kill to have normal, not narrow and flattened temples though.
• Retruded (hypoplasic) midface and missing/flattened cheekbones - well, this is a tough one and is slowly being repaired surgery after surgery. The 3rd surgery should have a major impact on my midface, so lets see if it can solve this problem.
• Shallow eye sockets - will be solved by my 3rd surgery
• Protruding eyeballs- will be solved by my 3rd surgery
• Beaked like nose- well, my nose is quite ok in this way, I might not even need a rhinoplasty
• Protruding lower jaw- has been completely solved by my 1st and 2nd surgery (mostly the 2nd)
• Overcrowding of teeth – the 1st surgery(SARPE)  and ortho treatment solved it almost perfectly
• Narrow high arched palate- the 1st surgery(SARPE)  and ortho treatment solved it almost perfectly
• Narrow nasal passages - solved by surgery 1 and 2 (the 1st one helped quite a lot already, 2nd opened the passages even more)
• Bite problems – class III maloclussion and open bite completely solved by surgery 1 and 2 and orthodontic treatment)
• Cleft Palate – NO

Problems which can occur with Crouzon Syndrome:

• Hearing loss- NO
• Absence of ear canals- NO
• Deformity of middle ears- NO
• Vision problems- i have minor vision problems and eye irritation, but nothing major
• Crossed eyes – NO
• Involuntary movement of eyes – NO
• Curvature of the spine – NO
• Vertigo and dizziness – sometimes
• Facial deformity – YES
• Deformity of limbs – NO
• Webbed toes – NO
• Minear’s Disease – NO

Well, lets look at it this way. I am really really lucky to not have any of the additional problems associated with Crouzon’s and most of the facial bone structure problems have been already solved or will be solved this year. I will never look completely normal, because my forehead and skull will remain somewhat flattened and disorted even after all the surgeries I went through.

Overally, I really recommend going the multiple surgery route with Crouzon, it can be life changing. (Although always check for possible complications of each procedure and take time to consider, if you are willing to go through the risk. I did and thats the reason why I am NOT having Le Fort II or Le Fort III. Loss of the sense of smell or partial loss of vision is not something I am willing to go through in case things went very very bad.)

Anyway, it seems good news to me. I already announced the spring surgery at work as well and it seems they do not mind

By the way, this is me now. The swelling is 100% gone now.

As the Christmass is aproaching, everyone asks me what I want for gifts. To be honest, all I wish for is that my next surgery really happens in spring as planned and that everything goes well. I want a nice face as a belated christmass gift and if possible, I would like to not lose a job thanks to surgery and recovery.

I am still wearing braces and elastic bands on the right side of my jaws, because it still needs a small rotation to right.  My orthodontist said that if everything goes well, I might have my braces removed this pring. God, I can not even imagine how it will feel to not have them anymore. But it would be awesome to have a metal-less smile for once

The cheekbone surgery is pending. It will not happen sooner than spring 2010, but there is a chance that my bones will not be ready yet or the bite is not fixed yet, or Earth gets hit by a huge life erasing meteorite or something similar, that prevents me from getting it.

But I am still hoping

Oh… and I also the feeling might be strating to return to my upper front teeth after all. I think I am starting to feel pain sometimes, which is a good thing. I thought the numbness is permanent.

I am sorry that I neglected this blog for so long, but life has been really strange, busy and I have been extremely extremely lazy when it comes to blogging or posting anything online. I do not know why really.

My surgery went quite well, even though I had some complications that involved massive bleeding and required donor blood transfusions and I had only minor post-op problems.

What I can say is… its really strange to have a completely different bite suddenly. My jaw was cut in Le Fort I line and slided forward about 1cm. My front teeth now meet and the upper ones slightly overlap. I had to learn how to talk, drink and eat once again and I was banded tightly for 6 weeks (so yes, 6 weeks of liquid food only).

I will still need one more surgery, but it should be a small thing compared to this one -  no osteotomies involved anymore.

And here, ladies and gentlemen, I present the results:

Of course there is some makeup involved this time, but overally, I am really pleased with the results. The overbite and pugface is gone.

This is me now. My upper jaw is wider than before and my hair is hennaed red, haha. I love my red hair, even though this pic is freshly hennaed and the color oxidized a little and is darker now. (Excuse the zero makeup bad skin pic, but I am pre-op, I do not care for warpaint atm, also the hair happens to messy after dry-blowing, lol).

Anyway, my teeth are lined up and ready for a new surgery – a maxillary advancement in a Le Fort I line. In other words, they cut my upper jaw off in the same place they did before, but this time they move it forwards and give me an actual bite. I mean hey, I have never had a bite that really touches, it will be a completely new thing for me.  Also I am hoping that it will stop all the annoying headaches and migraines I have been having all day the few last months. If things go well, no more dizziness, no moer headaches, no more extremely sore jaws. It will feel like heaven

Another good news is that I actually finished Kiseki, my brand new urban fantasy book, about a week ago and moved to editing. I already have a publisher who wants to give it a try and read through it, so we will see if he likes it or not. I have another one in my sleeve, but the one I am hoping for is one of the biggest publishing houses in my country and I was lucky enough to be able to meet with the director and introduce the idea of my book to him.

Anyway, I am off to hospital tomorrow at 5 pm and my surgery takes place around 8:00 am on Monday the 1st June.

Wish me luck guys, I am going to need it.

PS: Yes, I admit it, I am a little scared here. But trying to stay positive until I wake up from the surgery

As for my surgery, I am still waiting. I got some bad news from my ortho at the last visit – it seems that one side of my jaw is relapsing no matter what they do, so they keep postponing my next surgery and adding more and more wires to my mouth. I have some hope that my teeth and jaw could be prepared by the start of April, but by the way she said it, my next surgery wont happen sooner than in May or June.   There are moments when it is really annoying, because I can not plan anything at all until I have the date. There is a conzert of Yamato drummers in Prague, but guess what? Yes, I will be “probably” at hospital during that time… sometimes, I really wish I had it all behind me and could just look back and say “Whew, its done and I survived with flying colours, yay!”

Anyway, end of the rant and back to writing.

So, if you want to contact me, just drop me a message and I will answer as usually

As for my reconstructive surgery – well, things are not the best, but the improvement is visible, so I am not complaining much and am trying to cope with the few bad moments. I got my palatal retainer (which should work as re-expander as well and give me the few extra mm that the expander did not manage to) and seriously,getting it in was hell on earth. I was crying by pain and the doctor could not fit it in no matter what she did at first. One of my molar bands was ripped off in the process, which actually showed to be good, because she could stick the wire in and then cement the band back on my tooth.

One side of my mouth is extremely sensitive to pain and they have no idea why it is so. It looks like something must have gone wrong with the surgery. I suppose that is my luck

Anyway, I will be posting a little more from now on. I also got a myspace account (mainly for writing and work reasons), but if you want to friend me, let me know that you got my contact from here. I usually do not accept just anybody for the sake of “having a lot of friends”.

http://www.myspace.com/ladycandar

Well, life really works in a strange way sometimes. Not that I was not quite happy in the call center, but… I just got an offer that nobody could refuse

Ok. I had a lot of problems to get a job I wanted. I did not want to take something too low below my qualification and also needed to fit in my writing (so can not be dead after every shift) and granny (I need/want to go to her every weekend, so need slightly modified Friday schedule, because it takes 3 hours by bus to her). In anything else, I was flexible like hell but… yeah, no luck. Then I landed the call center job and I was happy to have at least anything before my next surgery, because I might be disabled for a while and will really need the money.

So, I spent 6 days (should be 5, but boss needed me and asked for one more day) in a call center as help center operator/coordinator. Basically, we received calls from people in pinch and organized appropriate and quick help for them. It was not bad and the people in the company were superb. Really nice friendly environment where you could ask anybody for anything and everyone was always nice.

But I got another offer – I was in a small attorney company and they offered me a job of an assistant with the outlook of becoming a paralegal soon. Nice salary, good working hours, looks like the people here are also nice (not the crazy disturbing types that I got used to but nobody is perfect, lol) and… *drum roll*… they will let me write my own stuff when I do not have any duties to fulfill. In other words, I can work full time and write almost full time at the same time. That is writer’s heaven. So… after one day of mad considering at night and bothering anybody I knew with questions (poor guys, I am so sorry XD), I signed my resignation letter and told the new company I will be starting this week.

For some reasons, my life is starting to be suspiciously good. O__o

EDIT: I just found a really great cologne to use. It is called Para mi Bebe Pink and it is… baby splash cologne. But god you should smell it. Nice “clean” scent that is not agressive at all (not like many others). It is 100% pure natural fragnance based, no chemicals in there.  I am in love… tempted to buy much much more bottles. MUST… RE-SI…S…T…. (edit from today: no, I did not resist and stuffed my closet with 5 more bottles )

Anyway, except for a small shock in the form of ants in our flat (killed them with fire… ehm, actually with detergents and washing powder) my good day continues ^____^

The offers look like this right now:

1) Assisting service coordinator and translator position in phone assistance company – decent pay, work 30 minutes by bus from my Prague flat, 4 days a week (long shifts). Its phone based work and not 100% what I would like to do, but I am qualified for it, would allow me to spend more time with gran and write. The cons are high work stress and that I would be probably braindead after work, also this is not my planned career course really. They offered me a contact, so if I do not get a chance elsewhere, I go for them.

2) Translation manager/coordinator in a translation company – decent pay, work right next to my house in Prague (so no transportation at all, lol!), 5 days a week (normal shifts), would be good career course. The only con is that I would have slightly harder time going to grans place, but I think I could manage. Oh and they are small, but quite rich company. If they offer me a contract, I am their woman, lol.

3) Junior assistant to general director for major Czech security company – decent pay, work 45 minutes from my Prague home by bus (and bad transportation), 5 days a week (normal shifts), chance for good pay rise and becoming personal assistant to the general director. The job does not look bad, but the transportation is major pain in the ass and also they are late with their offer, because I need to decide this Wednesday the latest. So, probably, I will pass this one.

I am planning to start hitting the gym when I go full time and also need to finish Kiseki (thinking about name change lately, lol).

My dream would be job in the Prague film studios Barrandov, but they have no opening for me right now and I seriously need a job with stable income. I thought about job in major Czech TV, but no interesting openings (that I have qualification for of course) is not available.

So, I suppose I am gonna be content with just being employed… be it where it is.

I will be uploading photos of my other kimonos when i get time to make photos of them as well, they are in BFs flat.

So, here we go…

White wedding kimono (I have almost the same one in red as well)

100% natural silk, pure white, perfect condition

Vintage pink kimono

100% silk, but a little rough due to the embroidery

slight staining on the lining, not visible when worn

Heavily embroidered uchikake

100% pure natural silk with woven pattern and heavy embroidery

perfect condition

Rare golden obi

Silver and pink obi

At the 20th March, I spent about a hour in the dentist’s chair and was getting my Hyrax out, teeth de-cemented and new bands applied on my molars. To be honest, it was not the most pleasant experience, even with 800mg of Ibalgin taken before I went to the hospital. But then, my teeth are quite extreme and I am clinical patient, so do not fear the RPE (Hyrax expander) removal just because I said it hurt in my case.

It’s really nice to have a horse bit free palate.

My teeth still hurt and my ortho says that they should not, so she did not use any more elastics on me this time, giving my teeth 6 weeks of rest with just the wire to keep them in shape. Hopefully, the palate and teeth will stop being sore, because it is really tiring lately.

Getting the half-slipped off band finally out also lets me to close my mouth a little better now and my open bite closed by about 2mm in the front. The result: TMJ got better.

Seriously, comparing my before and after pic of teeth makes me feel quite good about this all. There definitively IS an improvement, even with all the pain.

My next surgery is planned in about 6-9 months, after my teeth are lined up and prepared. It will be bimaxial with upper jaw moved forward and my lower tilted. I am looking forward to it, because the results should be quite dramatic.

As for the rest of my life: I still have no regular job, I am still quite sore and tired and I am still working hard on my screenplay, where I am getting to the finale. Seriously, I really want to have the draft done as soon as possible.

The total page count is 92 normed pages (minimalistic type of storytelling with minimal descriptions and a lot of dialogues) with at least 20-40 more pages till the story is finished. What keeps worrying me is the speed. The start is somehow slower, so I do not want to end it too quickly, it would feel unbalanced. But then, I also do not want to drag the story… aaargh, the pain of being an obsessed perfectionist.

The deadline I set for myself is end of April for the story and end of May for the English version and screenplay.

As for publishing – I am pretty much torn. I know I can publish the story almost immediately in Czech Republic, my publishers seem to be very interested in the story. But then, that would mean losing the first print rights to them and I would prefer to publish it overseas and I am dead-set on offering it to 2 well known artists as movie scripr and/or merchandise story/book. The chance is small, since I am an outsider and do not have connections in the field there, but I keep hoping and checking the field.

If I can offer a precise story, I can make this happen. If not, then I still have much to learn. Time will show.

Just joking, I love it, it is my baby. I only wish I did not have to struggle with all the facts. But it can not be helped, since the story takes place in Japan… and partially in VIP host club in Tokio. Facts, facts and more facts that need to be correct.

I am just writing the detective part of the story, just before the first big surprise unveils and to be honest, I trully hate to write detective stories, but Kiseki just demand this part of the storyline. Also while I was gathering information about japanese host clubs (with male staff), I came across this interesting documentary called The Great Happiness Space. I highly recommend it.

Here is a small scene from page 73 of Kiseki, the staff preparing for the last attempt to save the host club – A Christmas party. I roughly translated from my Czech draft.

Mentioned characters:
Mr. Sato – club owner
Akio – one of the top hosts and “swine extraordinaire”, but good at management

“Ok, the survival of this club depends on this event. Everything must be perfect. I have ordered stylists and hairdressers who will take care of you. Clothes will be provided by Naoki’s brand studio – do not forget to choose your style and appear for the fitting.” Sato looked as if he haven’t slept for days, but was spreading positive energy. “We will have media at the place, so nothing inappropriate. If the client gets drunk, take her to private room and call her a taxi. Discretely!”
Akio took the word. “You will get a day off today and tomorrow. As for the party, you will come at noon and leave around four or five in the morning. Who does not come is fired.”
One of the hosts chuckled. “And if somebody gets seriously ill?”
“Then he is allowed to die… AFTER THE PARTY!”

I am struggling with Kiseki – something is still off from page 60 and I am not sure what exactly. Probably I wrote something wrong about the reality of the host clubs, so I am getting myself few documents about them, so I can study and maybe think out what is wrong with my writing. I so hate being a perfectionist sometimes. Anyway, trying to write, having head full of ideas and having heavy migraine at the same time is no fun.

I promised myself that only one more page today and then I am off to bed. Good night guys.

EDIT: The migraine got a little better today, so I watched half of the document about host clubs. It’s called The Great Happiness Space: Tale of an Osaka Love Thief.  Also I edited few more pages of Kiseki. Again, I trully hate detective parts of stories, lol.

Hair:

I got a new haircut on thursday. I think I like it, its fluffy and a little closer to what I wanted than the last one. It can be made casual or very fluffy by mixing some foam and wax into it. The basic cut is similar to one of Gackt’s hairstyles, but since my hair is very fine and I have different facial structure (obviously, gah! >__<), it looks different.

Fluffed up version

Writing:

I spent most of the time trying to figure out what does not work in the last 20 pages of Kiseki. Obviously, I did not write the media and police actions timed too well. So I will reedit few scenes, add some other ones and delete few blocks of text. Anyway, it should work once I force myself to edit and rewrite all the things that I changed and scratched on printed papers. Somehow, I did not have power to do it today. Lazy, I know.

Gran:

When I came back home from Prague, I was shocked to death. When I said hello to gran and she turned to me, I realised that she has HUGE black-violet bruise around her left eye. First thing that I thought of was that somebody attacked and robbed her. What really happened was that when she was visiting her friend and they went to visit some garden, she stepped on a rake that was left there. And guess what? Yes, she did NOT go to a doctor. Damn, she could have  concussion of the brain or something… sometimes I wish I could just take her and carry her to doctor be she willing or not. Anyway, she is getting better now and I will try to get her to doctor for some check-up at least.

My main char Jun witnesses murder. But nobody remembers that the murderer ever lived – it looks as if it was Jun’s fantasy… and he becomes suspect instead. Since he is working in VIP club and the victim was member there, media start sniffling around, but they stay low, because the club owner is generously handing out checks for “discretion”. Buuuut I need to have the club closed later, so I can throw Jun into very important scene, where he discovers, that many things aren’t what they seemed to be.

In other words: I hate the damn media scenes.  I hate writing detective scenes… and since they are intertwined, its twice the mess. Anyway, I need to rewrite the murder scenes in news and newspapers. Again… ;___;