An Crouzon syndrome e-book?

I have been wondering lately… since my journey will be finished this spring (if things go well), should I write and try to publish a book or e-book regarding crouzon syndrome, coping with the illness, tips for pacients and their families and such? Most of websites just do not cover this thema – even the foundations seem to have very little to say.

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?

Fighting the illness

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.)

Spring surgery approved

I had a visit at my ortho and one of my surgeons (who is also chief surgeon of the maxfac department) and guess what? I got a YES for my next surgery. Apparently, the jaw is healing well, the clicking will subside in time (and I got some useful tips how to deal with the clicking, stiffness and ocassional pain). My ortho also thinks that if I patiently wear the rubber bands in the new positions, I could be debraced this spring, even though I still have to wear a retainer 24/7 for a while after I am brace-free.

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.

And surprisingly I am still alive ;)

Not much is happening in my life lately. I lost job because of the last surgery and recovery time, got a new one, finished my book (http://www.candar.org/en/?page_id=5), also I am really enjoying free breathing through my nose and that I can chew and bite properly for the first time in my life… all these small things that do not need much writing about, at least not on this site.

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.

Guess what?

Yes, I am still alive!

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.

1st June: Off to the hospital once again

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).

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

Alive, working, writing

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.

I am still here XD

Sorry, I havent been active here too much, mainly because I had nothing to write about. I am undergoing my ortho treatment, preparing for the next surgery (which will happen in few months if my doctor team decides on the final plan) and working and writing my book like a mad bunny.

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

Coping with stuff

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

The post I forgot to post on 20th may ;)

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 ^____^