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

14 July 2010

Fears for my Cochlear implant....

Don't get me wrong. I'm proud to be a cochlear implant wearer and would even say it's a part of me now but despite this and BEACAUSE of this, I just cannot go out in public with my Cochlear implant on show. I'm always scared that someone will pinch it, i know it's stupid but I love my cochlear implant too much too lose it and I can't do without it. I wear it 24/7 *apart from bed and bath* as any of my friends nad family know. I was quite confident wearing it when I was a teenager at college but I had an icident in my town where when I was wearing a baseball hat and this awful girl came from behind and nicked my hat right from my head and went over to her mates and played with it on her head showing off. As she snatched my hat from my head, my Cochlear implant nearly went wth it as i had my hair in a pony tail. I had the confidence to go ask for it back but my confidence was a bit shaken when I nearly lost the cochlear implant so ever since I've worn my hair down when I'm out and about in town. Might I was with my 2nd implant too. I've always been scared of losing the outer part of the cochlear implant. If i did, i would be in such a panic!!! Id be so lost without it even for one day! It would be nice to be able to show off my cochlear implant whenever I was out and about and show how proud I am to wear it and I hope i can sometime in the future. This cochlear implant has changed my life for the better and I really don't know where I'd be without it. One thing is for sure though, my life would so very different if my parents never implanted me in1994 when i was just 9.
I also rememeber the fear when my CI surgeon told me I'd lost the first one. I wondered how I'd cope without it and a million things rushed through my head as he was talking. Even If it was only a month til i was reimplanted in the other ear, i think what helped me was having my friends at school coz I was only 15 and i was grateful the school had a deaf base too so I had extra help. It has given me fears about losing my 2nd one though, although I know it's unlikely because I now have my PEG and I'm getting my vitamins and nutrients, so if i EVER got another ear infection, hopefully i'd be able to fight it off. I know I only lost the first one because I coucldnt fight off the infection because of my undiagnosed conditon but I should be able to now thanks to the PEG and the feeds I'm having and now that docs know about my mitochondrial conditon.
I know I am proud to be a CI wearer and I hope I'll eventually get over hte fear of not being able to wear it in public places one day
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