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


25 July 2009

Anger at "no cochlear implant" facebook group...

In the last few days, I have been introduced to some new cochlear implant users although not in the best way because I met them on an awful group on facebook called "No cochlear implant" and I and other cochlear implant users are all angry at this silly woman who thinks cochlear implants are unhealthy and can harm children. A lot of cochlear implantees i know on facebook are angry at this group and have vented thier opinion of this awful group. I am just as angry at her too because this woman is giving the wrong information of cochlear implants to people and may put people off having one. She is deleting anyone who goes against her which makes her a coward.
I could understand this woman if she saw both ways of having a cochlear implant but she is totally against them for some reason and is trying to put other people off them too! Why would anyone do that when a cochlear implant RESTORES your hearing, it does not REPLACE it because you are still deaf without the cochlear implant. This woman says hearing is unhealthy which is ridiculou because of course everyone is born with their hearing! A cochlear implant is a wonderful invention!
She also states that she doesnt want children or teenagers to be implanted til the age of 18 and they make their own choice.. which again i find is silly because you lose years of the experience of learning to speak and listen. She also thinks hearing aids are the same as cochear implants as well!!
which they are not! because if you are profoundly deaf like me, normal hearing aids dont work and require a more powerful hearing aid such as a cochlear implant.
I and other cochlear implant want this woman to delete her group off facebook!
I for one am proud of having a cochlear implant and I know lots of other people who love theirs too! I am not going be made to feel guilty in any way for having my implant. It has made my life so much better! I hope this woman understands shes fighting a losing battle against us cochlear implantees!

24 July 2009

No batteries...!

My PEG is still sore and has an infection despite being on 2 weeks of antibiotics. I seem to be come immune quickly to antibiotics after just taking one prescriptions worth. Even when I had my ear infection in my previously implanted ear, all the ear drops, creams and antibiotics, they stopped working on me. I think it took having the PEG and having all my nutrition and vitamins of the feed that gets fed through my PEG to clear it.
I have the docs appointment today to see if anything else can be done for my PEG infection and at least I hope it will be better before my birthday in August. The ABBOT nurse is also coming over on monday to check my PEG out too.
I also called up for batteries for my cochlear implant on Monday, and I didnt recieve any through the post all week and when mum rang up today, she told me they had no recollection of me rinigng up on monday! ahhh but now they are on their way I hope because I only have the 2 spare packs of batteries that my parents keep in mum's bag and dad's car. Hopefully they will arrive!

15 July 2009

Yet another blow to the PEG...

The last 2 weeks or so, my PEG has been playing up again with yet another infection :(
It seemed to start up before I went on holiday which it was a bit sore but not as bad as previous infections and luckily I had my cream with me to soothe it.
its still not clearing up on it's own though so its back to the antibiotics... belugh which I'm not a fan of taking medicene ( unless it tastes nice like Calpol which i use to get rid of any pain in the peg area) I cannot swallow pills (I dont know why, i feel the need to chew them...) so if i have to have any pills, they have to be turned into medicenes.
I've had a long day what with having no sleep last night and having my volunteering at the school today but today was my last day for summer til September! Woop! Can relax and allow my PEG to heal! with the help of magical antibiotics... hehe sleep zzzz

12 July 2009

Piano Guy...


I went to Bournemouth again for the week to see my boyfriend Gwyn :) I knew he played keyboard and piano but I had only ever heard him play on the keyboard. While I was at his house, i was upstairs and I heard what I THOUGHT might be a cuckoo clock hehe but then as I went down the stairs, I could see Gwyn playing on the piano and it was a lovley tinkly sound to fill a quiet house. :0) All in all a lovely week and I got to see him play in the band that he is in "the sables" I like that I'm in a relationship with a musical guy hehe, and I get to hear all these new sounds that he plays :)

2 July 2009

Hot, Hot, Hot...

Hasn't it been warmmm?? Although I'm loving the sunshine summer, I'm having to be careful about this heat since a few years ago, when I was a bit more underweight than I was now, and we had a heatwave like this, I managed to faint and bang my head on the wall.
The other night I felt so dizzy I couldn't sleep that I had to text my brother to bring me a banana to feel better again!
I feel better now I have got used to it hehe but according to the weather man it is due to get cooler but still warm which is fine by me!
Just hope its nice and sunny for my hols next week!