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So, lets see an overview of my fight with Crouzon syndrome.ย  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. ๐Ÿ˜ฆ
  • 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)ย  and ortho treatment solved it almost perfectly
  • Narrow high arched palate– the 1st surgery(SARPE)ย  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 ๐Ÿ˜ฆ
  • 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.ย  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 ๐Ÿ˜€

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 ๐Ÿ™‚

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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. ๐Ÿ˜ฆย  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 ๐Ÿ˜ฆ

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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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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Tired to death

I just came home after 4 hours of travel. I am so tired I can not write even one page of the story that I am working on. Anyway, I made some alterations in my head and hope to write at least 10 pages tomorrow. Especially the infamous octopus scene O___o

As for my teeth, I still have the expander on. Honestly, its starting to be quite tiring. :-/ My ortho put a rubber band on my front teeth to pull them together and close the gap. First 2 days were quite painful, but now its ok. I almost do not feel it anymore.

I got another date for the removal, now hopefully a final one: 20th March, 9:00 am. She is setting asside a hour for me, so I fear that it wont be a simple snapping off as she claims, but anyway. Also thanks to things not going as planned during the expansion, I will be getting 4-6 new bands on my molars instead of the planned 2. I can not wait to have it all behind me. O___o

Oh and work-wise. I got 2 rejections so far, but the promising company did not reply yet, so I am being hopeful.

Midnight edit:

I drank a huge mug of coffee and wrote 8 pages. The story is going well. Unfortunately, my gran is feeling really bad. Her health got worse since thursday when I left our flat to see a doc. Honestly, I am really worried scared… but unless doctors find a way how to help her, there is nothing I can do except for helping her when I am with her. ๐Ÿ˜ฆ

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Ok, I got my hair chopped short yesterday. And with short, I mean VERY short. I did not have such short hair for at least 10 years, probably even more.

I ran to the hairdresser with a black and white picture of a haircut that I liked, but unfortunately, my hair is quite fine and that person had nice strong hair, so it was impossible to create on me without ton of layes of laque, styling foam and whatever, so we decided to improvise. I had two demands: I want it layered and fluffy and I do not want a blunt fringe.

When she started cutting it, it felt strange to have my hair chopped off short just in the middle of my neck, but it was about to get even shorter. So I sat there, watching her dance around me with all sorts of combs, scissors, razors and hairpins. Anyway, the result is not bad. Short, light, fluffy and messy. It can be combed back withย  the help of some styling products for formal events, but it needs almost no maintenance for everyday wear. I would say it is a good haircut for somebody who spends most of her time at home (with aching teeth, gah!) or with doctors.

As for the shattered dream… well, I went to my orthodontist for separators into my lower teeth, so I can get my lower braces on next thursday. The separators hurt a little as she forced them in, but that is mainly because my mouth is incredibly sensitive lately. Anyway, she checked up my teeth and palate and commented that half of my palate did not expand as well as the other, but they can correct it later with some sort of “braces” (I forgot how the thing was called). The bad part was the band around my last left molar is really somehow loose and looks like it might slide off one day. She told me we need to keep it on till the second half of January and told me that I should not bite at all. So back to mashed stuff. But… I have been told that we need to keep the RPE on only for 2 months after we stop turning it… which suddenly changed to 3+ months. I really hoped that I will get it off soon, because my teeth are really very sore and I am getting iritated gums and TMJ from the bad bite and the loose band. Well, nothing can be done I suppose. I will be a good girl. Gah.

And as for the thing I write: I got stuck. I have two great characters and strong storyline, but I am stuck with the settings and the events that happen in the first third, the introduction. I had one quite good idea, but as I say, it was quite good, not brilliant. I am working on another one now, playing the story over and over in my head, writing down notes and pieces of scenes. It seems to work somehow, so wish me luck.

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I did not write much lately, but hey, nothing major was happening in my life and I would not like to keep ranting about hot chocolate and blended food, lol.

I have been obsessed by a screenplay that I am working on last few days. I had idea for few scenes written down months ago, sometime last year, but just few funny scenes. I have been looking for material for a movie written for one exact person and the main char who I drafted that time just fit him. I could imagine him in the scene. The char fit. I had to change a lot from my old concept and gave the story different twist and changed the plot a lot (the draft was for a play or just short story for some anthology), but overally I am really happy with the whole thing. I am just writing down notes for the plot and story, which I want to show to my friend who is coming from Japan this wednesday. He is a movie director, producer and scriptwriter who is in the field for a loooooong time, so I would like to have his opinion before he vanishes back to Japan. (He does not know yet, lol. Poor poor guy ;))

I also had an interesting saturday morning. I have been waken up by some weird noise. First, I thought there was a big butterfly on the window, but in this weather? Then I found out it was a Great tit who got in through a tiny ventilation hole and got trapped in the room. It was throwing itself against the window, trying to get out. So I had to catch it carefully and release it. It was really strange.

Anyway, I am still having some tootache and migraines, but overally I feel quite well. Also all my stitches are out by now and I am not swolen at all anymore. Have a scary photo of me and the gap of hope and wonders (Charlie the unicorn anyone? ๐Ÿ˜‰):

Scary photo of me and the gap of hopes and wonders

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Just a short post. I am almost 1 month post op, so here are my photos. I am still somehow swollen, my mouth seems asymetric due to the nasty openbite and gap between teeth, but I think there are some improvements already. Unfortunately, my acne came back, gah!

But the biggest improvement is… I CAN BREATHE THROUGH MY NOSE WITH NO PROBLEMS, YAY!!!

Profile before

Profile after

Front view before

Front view after

Smile before

Smile after

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I was visiting my doctor today. She checked me up and we had a long talk about my close future. Obviously, she got papers from the hospital and they were really long detailed ones. We talked about the whole surgical plan and about my other 2 (actually maybe 3 :() planned surgeries.

I am currently jobless and in a way, I love it, because I do not have to hurry and overstrain myself at work, but I feel that I should be doing something for my career. There is so much I would like to archieve.

But going to an interview is not an option for me. I can not speak properly, I look horribly, not to mention I can not carry heavy things or overstrain myself. So I can not do a job I am qualified for, I can not do jobs that require manual work… and going to interviews for editor/writer position will be of no use, because honestly, noone finds a seriously lisping creature with a huge gap between her teeth and un-closable mouth a perfect colleague, lol. And then there is the pain – normally it is ok, but I am still having some bad moments. (But hey, I can at least breathe through my nose without problems! Hire me? Please? Pretty please?)

I am now on some sort of sick leave after the surgery, but my doctor told me, that I could have problems with the employment office where I am registered, if she leaves me at the sick leave too long. Honestly. Does it have any sense to take a job, if I am 100% sure I have to go to doctors every now and then? (My next visit is in 14 days, but when braced and starting the preparation for 2nd surgery, I will be there at least once a week which usually takes few hours) Not to mention I am sure I will be on sick leave again after the surgery. My health is a funny thing – I heal quite well, but I keep getting rare complications. Honestly, if I grew frog’s legs or rhino horn after my next surgery, I would not be surprised, lol.

So, my doctor things I should ask for a sort of disability pension until the surgeries are done. She says I am in such a state, that it should be possible. Honestly… I do not know. It definitively is an option that would make my life easier, but then… disability? Getting disabled after facial surgery, now that is rich. Anyway, I can not say I am not thinking about it. It would be nice to just go through the surgeries without any worries about job, getting back to work or getting scolded by the employment office for being on sick leave for too long. So… well, I might get legally disabled for a while – about a year.

Thanks to the Gackt surprise yesterday, I forgot to share what happened to me lately. I visited the hospital and an orthodontist had a look at my palate and teeth (my ortho was somewhere away, I think some congress) and said everything was ok. Even if the halves of my palate are uneven and there is a 2mm step-off in the middle. She says they will correct it by fixed braces. The band that looked like it was slipping off my last molar seems to be ok to her and she says there is no way of preventing it from cutting my cheek. Great. I will just help myself as I did before, gah. When I said that the step-off in the middle of palate hurts, she poked it. OUCH! Then she took this dental hook that they use to probe teeth for cavities with and… I got all pale and was prepared to bite her fingers off if she tries to poke the palate and the bone, but she did not in the end. Anyway, no help from them, gah. I am sure it is some sort of rare complication as usually… and that as usually, they will find out too late. For some reason, I am somehow resigning to it.ย  I am really tired of it to be honest.

I also had a nightmarish experience this Wednesday. I went to help gran to bring some apples from her friend’s garden. I would not normally try to overstrain myself like that, but I just could not let the old lady carry them. Anyway, when we went there, the woman’s dog was running behind the fence and barking. I asked the woman if she could lock him in his kennel just for a while, explaining that I am after surgery and if he jumped at me or something, I might have serious problems. Gran said he wont do anything to me, but I was decided to not get in until he is away. That is when it happened. The old lady went to lock him, but he ran away from her and as my gran was telling me to go in, she left the gate open. The dog, a huge yellow mix of Irish wolfhound and something just a little smaller, ran out of the garden and… it attacked me. I have no idea why, maybe it felt that I feared it. Anyway, I just managed to scream and turn to the fence quickly and the next moment I had a huge creature on my back, growling, barking and baring it’s teeth. He did not bite me, but I got some nasty scratches from his claws. The worst was, his weight knocked me against the fence and gate. Only thanks to good luck, I did not smash my face against it. When they caught him and dragged him away, I was so scared I was shaking all over and could not calm down for a while. I remember saying something about “Fucking bloodthirsty beast”, lol. The lady said that the dog never ever attacked anyone before like this. I guess it is just my damn bad luck then.

Anyway, in the end, I am whole and so is my jaw. Nothing really serious happened to me. The next time any dog will try to do something similar, I will bite him too. Oh, damn… wait… I can not bite him with my upper jaw like this… hmm… ok, next time I will drop my jaw and use it to slice his throat open then, lol. Now that would be scary.

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