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

29 November 2009

My eye situation.

For the past 2 years, the docs at Newcastle have been asking me about a eyelid lift procedure and they did so again at the last PEG op too. I never give them a chance to talk about it because I don't want the docs to touch my eyes surgically even if it is just my eyelids. They aren't so bad when im wide awake but at worst they look like this

and it gets me down at times. The droopyness is because my eyelid is a muscle and because of the condition I have, the muscles get weak therefore my eyelids don't have the strength to open fully especially when I'm tired. It is a symptom of the condition which is Mitochondrial Multiple DNA deletions.
I know they may eventually get worse so I'm going to have to force myself to talk about the procedure when I go in March 2010.
I was scared about the PEG procedure but this eyelid procedure, even hearing about it basically terrifies me. My mum would love me to have this op done because she knows my eyes were pretty when they are open enough. She says "you have lovely blue eyes, we want to see them"
Now every time i see that they are droopy I feel ugly and people have often commented on them in the past saying am I drunk when I've never touched a drop.
I cry about it sometimes too. I know when it comes to march, the reality is going to hit me and we need to talk about what I've been avoiding for so long.
Doc's say it just a little cut in the eyelid to bring it up, but its never just a cut is it. This is my face we are talking about. It's right there in people's faces. I wish to speak to someone who's had it done first to see the benefits. I don't want to go into this without any research.
My parents keep saying its basically cosmetic surgery on the NHS! They are now so closed when I'm tired my eyelashes get in the way of things and make things fuzzy. I don't know how it will affect my double vision either.
I'm just not going to think about it now til the time comes to talk about it next year.

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