Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story


24 February 2009

Happy 15 years of sounds to me!

Today, on 24th February, in 1994, I recieved my first cochlear implant at the age of 9, having gone profoundly deaf in 1993 with no indication of happening. My parents were distraught to find that I was profoundly deaf but there was a light at the end of the tunnel with a new device called a cochlear implant!! My parents may have had to fight to get the insurance for the ci but Im glad they did! Nowdays, a cochlear implant can be a regular occurance compared to when I first had mine. I sound so old in cochlear implant experience terms! Its good to know that other people can have the same experience as I am having and have their hearing back or just discovering the first sounds they have heard in their lives!


To get from being a shy child with a bulky processor like this...


to a confident woman( if somewhat cheeky!) with a behind the ear(BTE) processor!!






is a remarkable thing in science and it's getting better every year! Although, I haven't recieved the new Nucleus Freedom yet! but I look forward to trying it out and see if the sound quality is even bette

I may have lost my first cochlear implant in 2000 but I received another of which I still have embedded in my left ear which still provides with me with wonderful sounds such as music, voices, laughter even my dad playing his guitar and birds tweeting in the morning! There's always some bad sounds though such as the lawnmower or the hoover! It's like a drill through my head but I never seem to want to turn it off! Thank god I can just switch off and get some peace sometimes though!

Finding out HOW I went deaf was a relief too with the mitochondrial condition I was born with because we had gone years without finding out exactly what happened, there was just no explaination from doctors when I first went deaf, they were baffled! But we found out eventually even if I did have to go all the way to Newcastle and get another doctor out of it!!!

I have had ups and downs as well with the non-budging ear infection and exploratory operations but it is now gone a few years after it first started and I'm finally starting to come to terms that it's actually gone and there was or is no threat to the cochlear implant in my left ear!

I think i would have been a totally different person with out the implant as my mum was explaining to me once, she would have had to enrol me at different junior school, different high school etc and I never would have met the people i have!
This evening, I celebrated my CI anniversary with some pancakes as it's pancake Tuesday woop! hehe I like mine with lemon and sugar yum!!! :D




21 February 2009

People power...

Do you ever notice that the people around you have a profound effect on you and your mood??
If you are happy, it's because you are around a great bunch of friends or loved up and have that warm fuzzy feeling! If you're sad you're probably around people who are not very nice or making the odd horrible comment about what ever bad point you have in your life but ah who cares because the good people outweight the bad people most of the time even if it's just that one person who's always there to share a laugh with you! It can rarely be non-people though, sometimes it can be just something as simple as clothes shopping that stresses me out! But mainly it's people!!
Everytime I've ever cried or got down about something has been down to bad people with their comment etc "whats wrong with your eyes?" in a bad way and dont apoligize for it when I do explain.. or the worst before I got my weight on.. "you skinny cow why dont you eat something?" There can be some cruel people in the world who don't really give a crap what they say because they either think it's cool to be like that or they are just miserable, lonley people who really have anyone to care about?
Why some people don't notice how such a bad little comment like that can affect you and how you are, i'll never know. Some people just don't think! or maybe they like the attention of being horrible but I don't see many people making a living ut of being horrible! (Well, unless you count Simon Cowell!! but that's just probably for show ha)
I've stuck with the same group of friends since high school as well as having made some more great friends since then and you know that first off if they are going to be nice people or bad people as you get to know them. I feel lucky that I can keep the good bunch of people that I can have a laugh with and have the stength to leave behind bad people who have made comments about either me or my condition who aren't worth being around. People that know me well will know that I do joke about my mitochondrial condition or my deafness such as how I'm gonna get all fat or the fact I say "what?" some of the time but that does'nt excuse a stranger who does'nt know me to say a bad comment! I have had to learn to become defensive about things like that because there's always gonna be horrible people in the world and you can't avoid it. I would rather stick with my good group of mates than make new ones that turn out to be horrlble in the end but I haven't done too badly so far! :0D
So here's a lesson for some people, think before you say something, you never know how it might affect someone! It does'nt pay to be nice! Horray for good people power!
Have a nice weekend all!

16 February 2009

I am still around...!

I haven't blogged for a bit so I felt I should! It's half term next week so will probably be bored silly but i'll try and find something to keep me occupied! The snow is mostly gone now (boooo!) although it is still cold! At least we are no longer in the minus temperatures! It will soon be spring :0D and the sunshine might actally come out to play! I hope it gets warm soon! I miss sitting outside and reading my book on the swing chair!

I had a good Valentine's weekend and hope everyone else did too! I'm still pondering how to celebrate 15 years of having a CI (wow so long!) I'm sure I can find something! :) If any one has any fun suggestions Please suggest some to me on comments! :D x

On a bad note, I have lost some weight, more than I thought actually! Ive dropped back down to 7 stone 2 pounds when I wanted to stay above 8 stone which is dissapointing but I haven't seen the dietican for few months now... which is bad on the medical profession! I'm lucky to have my parents keeping an eye on me and notifying me if I look like I'm losing weight! It may be nagging but I'm glad they do. I want to stay above 8! I love being curvy and I look better curvy than being a skinny minnie! My mum is going to call up the G.P to see why I haven't been sent an appointment yet! I should be seen at least every 3 months to check up on my weight.
I do love that I live at home because there always someone to tell me to get off my ass and get something to eat and stop being distracted!

My bruise from the fall has just began fading away now! woop! I must stop watching the news too... why do they have such depressing stories on?? It's enough to bring anyone down! So I switch it over to something funnier like "scrubs" yes a hospital comedy! I dont know why I enjoy watching hospital programmes such as House or casualty. My parents go "You've had that done... " like I don't know about it!! haha!

12 February 2009

OWWWWWWWW!

I decided to pop to town to meet my mum after she finished work and do a spot of shopping :0), which is a rarity for me because sometimes I just HATE clothes shopping! I do my best to avoid it as much as I can! So we always stock up on clothes so I don't have to go again for a while! I wore my Ugg boots because my trainers needed washing! The problem i have with any kind of shoes is I have to buy shoes that will most definitely make sure that they will stay on my feet and not keep slipping off otherwise i shuffle my feet trying to keep them on!!
I also sort of have to hold on to someone or kind of link arms with someone to focus on walking normally! ha! I was walking behind my mum then weeeeeeeeeeeee, I go flying! Triping over a crack in a pavement! Im so used to falling over sometimes I didnt even cry, I just got up and mum moaned at me about how I should pick my feet up as per usual.
I try not to let stuff like that get to me, it doesn't happen often either so theres not need to moan about it! I hope I dont have any bruises on my knees tomorrow! grr!

4 February 2009

Top 100 bloggers award 2008 on Wellsphere...

I would like to say thank you to the people that voted for my blog on the Top 100 Wellsphere's award 2008. I came 57th Not bad for some one who only set up their blog last year!! Maybe il do even better in this years who knows!





People's HealthBlogger Awards

People's HealthBlogger Awards - Best 100 Winner!


Wellsphere

3 February 2009

Snow sounds...

Forgot to mentin this on the last blog, I have been hearing a few sounds with snow! It's all very silent when it's actually snowing then the wind slightly blows a cold icy blast past your cochlear implanted ear which is a sort of whooosh. Aksi snow when you are wakling on it sounds very crunchy! There was thudding when snow fell off the trees.
I took a video of the snow falling yesterday, it continued like that for most of the day...

2 February 2009

SNOW!!!

Today has been a bit excitable since we have been having snowfall all night! The weather has been forcast bad snowfalls today and tomorrow! Snow has never sticked on the ground or go deep in the previous years! The last time we last had snow deep as this was 1992! So its all been very excitint to go out in it and watch it come down! Febuary 1992


Febuary 2009


i made a heart shape on our lawn using my feet!


It has all been so very fairy tale like standing in the garden spinning around with snowflakes coming down!! I got in from the garden and unleashed a mess of snow on my mums kitchen floor!!


Ah but it was nice having a snow day even if it comes round every 15 yrs!!! haha