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So, lets see an overview of my fight with Crouzon syndrome.  I borrowed some characteristics from some websites

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.)

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Ok guys, I apologize, that I havent been posting for a while, but my life has not been so interesting anyway. I am still doing all the ortho stuff with my teeth, I am still working and I still spend most of my free time with a boring life of a writer, lol.

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).

candar-red

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 🙂

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It seems that I am really neglecting this blog, but the truth is that I do not have much to write about. I am very busy at the moment with my dayjob as a legal secretary and trying to finish my book and screenplay in the spare time. Seriously, sometimes I feel like I needed at least few months of vacation to finish it, but even like this, I am getting closer and closer to the end. Only few dozen pages and I am done.

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.

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Life is going decently, that is why I havent been posting here for a while. The job showed to be really nice and I must say I love it. I was also able to finish one of the difficult scenes in my screenplay and am almost done with the story (only about 145 pages of the finale, but I have them drafted already). And yes, I am still foolishly dreaming of working with Gackt on this project, lol.

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

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The new job (aka Life can be a really strange thing)

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 ^____^

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Going fulltime

Ok, if nothing major happens, I am going full time from the 12th May. I have one contract offer before me and am waiting for one more company to decide if they want me or no. Either way, I have a full time position secured.

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.

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It’s out! After 6 months, it is out!

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.

braces

braced smile

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.

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