Its over 500!

Over 500 views, have to say I'm thrilled with how successful this blog has been. I have had nothing but positive feedback and I hope to repay this by continuing to write as much as possible. Unfortunately since I'm back at uni it may be that I do not update as regularly but I will try and make each post as informative and interesting as possible.

Thanks for the support.

Technology

Isn't it great? Well the answer is yes most of the time but if you depend on it and it does not work then it is a real pain in the rear. Because I am partially deaf I have to use a hearing aid so I am dependent on it, so there is always the worry of the battery dying when I'm out and about, it is rather surreal when you are walking along and suddenly its like someone is turning the volume down slowly. Its  even more worrying if you realise that you have forgotten to change it and then you hope that it will hold out until you can change it.

What's more annoying than the very occasional dead battery is the constant need to improve things. I use a radio mic system in order to hear the lecturer more clearly and have used the same one from primary school to high school. But last year I was told that if the university was going to supply a system it would have to be an upgrade as the one I had wasn't being made any more and if it broke the parts to fix it would not be available. What a lot of hassle it turned out to be, needed a new receiver, couldn't figure out how to work it properly, it wouldn't work etc. etc. So last year at uni I had just used my old system as it was a lot easier to use and it actually worked but of course the night before I go back to uni I check that its working only to find out that the mic cable has split open...Thankfully between today and yesterday it has decided that the new system will work but we shall see.

Lets compare the two systems shall we:
Old system:

• On/off switch
• Low battery indicator
• Requires one AA battery usually lasts more than a week
• Small and light, clip is built in
• Mic cable is removable, just need to remove it and plug in audio cable for music

New system:

• On/off switch
• Mic mute button
• Synch function
• Monitor function
• Menus with settings
• 3 level battery indicator
• Requires to be plugged in to charge
• Clip is removable but is very bulky
• Mic is much larger, removable but only with a lot more effort
• Has settings for audio devices which include general and ipod nano...and both don't seem to work properly with my mp3 player

Yes the new system has more features and is apparently an improvement, I just can't understand why people should be forced to upgrade when the old system works so well and they are used to it.

My looks do not define me-Part One

One problem that people with a facial disfigurement/disability etc. have is that people sometimes don't seem to understand that apart from that one thing that makes them stand out they are in fact no different from anyone else.

This is what this series of posts is about, I will post between regular posts every once in a while about something not related to TCS.

So after stating my deep appreciation to be able to listen to music I might as well talk about the bands/artists that I like.

My top 5 bands at this current time would have to be:

1. Radiohead-such an amazing and versatile band, top of my list even though their first album isn't that great and their most recent album is hard to get into.
2. Muse-I hate it when people say they are a Radiohead tribute act when they sound nothing like them. Three amazing musicians who know how to put on a show and write some cracking tunes.
3. Foo fighters-have to say I'm not a fan of some of their songs but they have such a list of hits that it doesn't matter. A truly modern rock band with a great sense of humour (see their videos for learn to fly, a long road to ruin etc.)
4. Biffy Clyro-another band who really know how to rock, watched their revolutions live dvd recently and was blown away at how fantastic they were.
5. The Killers-saw them live a few years ago and they smashed it out of the park. I remember when I got my first mp3 player and Mr. Brightside, Smile like you mean it and Somebody told me were three of my most played tracks.

Favourite songs at the minute are:

• Queens of the stone age-lost art of keeping a secret
• Tired Pony-that silver necklace 
• Red hot chili peppers-raindance maggie
• Two door cinema club-come back home
• Snow Patrol-called out in the dark

Also saw this the other day, not that fussed on the screaming/yelling but that chorus has been stuck in my head since I first heard it:

Treacher Collins Syndrome in the media

Thought I might as well talk about TCS in the media as TV especially has raised awareness of TCS through various programmes.

I might as well start with the man himself Jono Lancaster who has been in several different programmes, interviews and magazine articles.I am not going to repeat his story in its whole but the basics are that he was given up for adoption just 36 hours after being born because his parents couldn't or wouldn't cope with his condition. He was adopted but has had to deal with bullies up to this very day.

The first documentary he was involved in is called Love Me Love My Face, this is a documentary about his life and his quest to find his birth parents. And the second one he is featured in is called What if my baby is born like me, this talks about the decisions that he and his girlfriend Laura will have to make in terms of whether or not they should have a child and what options are available to them.

http://www.bbc.co.uk/programmes/b00w4gkv-love me love my face
http://www.bbc.co.uk/programmes/b010n37y-so what if my baby is born like me

Andy Tedder featured in an episode of the channel 4 series beauty and the beast-ugly face of prejudice. In this series people with facial disfigurements are brought together with people obsessed with their looks. Beauty queen Elicia is shocked by his looks and when she finds out he has not been in a relationship she asks him if he would ever consider a prostitute...this is made even more awkward by the fact that Andy is a firm believer in Christianity. But in the end I think the experience actually helps her and she may in fact spend a bit less time focusing on her looks.

Here is the link, as far as I'm aware you can still watch it:
http://www.channel4.com/programmes/beauty-the-beast-ugly-face-of-prejudice/episode-guide/series-1/episode-3

Another documentry is born without a face which is the story of Juliana Wetmore who was born with a very severe form of TCS. It follows her and her parents and talks about the various surgeries she has had to undergo.

http://www.julianawetmore.net/story.php-her story on the website her parents and her nurse post updates on. (note of warning the pictures are pretty shocking if you haven't see her before)

TCS was also featured on:

Nip tuck in the episode "Blue Mondae" in which one of the plastic surgeons comes across a guy with TCS working in a coffee shop and for his own selfish reasons he offers to "fix" him for free, the surgery doesn't miraculously fix him and he then decides that it was a mistake and doesn't want to go through the pain and embarrassment of further treatment not the most uplifting piece of TV.

Also Greys Anatomy in "Start me up" in which their patient Sarah had TCS (although in my opinion not proper TCS as she was only missing cheekbones) she wanted surgery in order to be able to play sports without fear of getting injured through her lack of cheekbones.

The quest for glasses

It seems that having TCS wasn't enough for me I also have poor vision. Well obviously a lot of people have poor vision so what's my point? My point is that most people don't have TCS. Now hold on I'm not complaining about this double whammy what I'm complaining about is this fashion trend of narrow rectangular glasses. With the way my eyes are I need larger frames which actually cover my eyes not these wee things. As a child I didn't have this problem but as I got older and this trend came into being it became harder and harder to find glasses that suited especially since I had to replace them every year since 1) I was growing 2) I kept on damaging my glasses in various ways, getting hit with a football was probably the main one. So rather than being able to go get my eyes tested and go to one place and find a pair of glasses we were forced to go hunting for glasses with deeper frames sometimes we would try 3 or 4 places before finding any. It has only been recently that the frames have started to become a bit deeper but last week I ended up just getting my glasses re-glazed as none of the ones I tried on in the shop suited.

Never again

Well it turned out that it was a laser treatment rather than electrolysis to remove my lower eyelashes. Wasn't very confidence inspiring to be told that there was a good chance that it wouldn't be permanent and that they could grow back, I decided to go ahead as we were there and if it worked then great. I have to say I regret this decision, I'm sure that the local anaesthetic injection (2 below each eye) was one of the most painful things I've ever endured. It was far worse than any other injection I've ever had including at the dentist. To make matters worse when the doctor finally carried out the laser treatment on some of the "flashes" it still stung so the injections hadn't even worked properly. Most of my lower eyelashes seem to have been removed but I will have to wait and see if they grow back. But if they do I will just opt for the plucking option every time I go for an eye appointment as it was mildly uncomfortable but not painful.

Eyelashes

So it seems that my appointment to get my lower eyelashes removed has finally come through. I never really planned to get them removed but at my last eye appointment the consultant said that they could be causing damage to my eyes and that I should think about getting them removed. Of course he wanted to do it right there and then and so pretty taken aback I said that I would need to think about it. He decided that he would pluck them out that day ( a temporary solution compared to electrolysis) to see if it made any difference. To be honest I'm not sure if it did but they grew back a while ago and I noticed that one could indeed be rubbing my eye and since they serve little or no purpose I might as well get them removed. Bit apprehensive about it as with all hospital related stuff but if it means my eyes don't get damaged and are less red then that would be awesome.