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 April 2009

Good to latchhook...

There are times when I get bored at being at home, so when i asked mum about things to do, she said there was a latchhook kit still in cubboard so I decided to get to work on it! I'm half way through it now! I shall post a video of it soon! :0) It's good to latchhook because it stops me from washing my hands sometimes. It requires concentation on the latchhook so I listen to music on the VH! classic channel while I'm doing it, the thing about this latchhook I'm doing now is very complicated with the colours and symbols! I have to be careful not to get them mixed up or not miss a single strand of wool on the lines or it will all go wrong!
My PEG pump got serviced today, i can't belive its been two years this may that i've had the PEG. it's gone by so fast and most days I hardly notice it's there and it's become a part of me now. I guess part of me will be sad if i ever got it taken out because I'm so used to it being there now and doing the water and the feeds. I hope i do get it taken out eventaully thought. I haven't weighed my self for a bit because the weighing scales we have keep changing everytime anyone is on them so it's hard to get an accurate weight! Which makes the new rule with the dieticans sucky as the new rule means they don't have to see us in person anymore to weigh us, just call us up now and again...1 How is that monitoring my weight? Surely she needs to see me to see how it is going? At least my parents would tell me if I was lsoing weight. :0D
Update on the eyelid lift, I spoke to someone who's mum had the procedure, and i feel happier about what may go on, and still have Qs to email to the doc about it. I'm still scared about the decision to actually go through with it thought.. :0S because only I can make that choice. I wish someone could make it for me but they can't.
I'm sure i'll get there anyway!
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