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


5 February 2012

Tumble...

I took a tumble in the bathroom last night at 3am. Must have been tired. I had basically crawl to my bed to get myself up! i now have a sore elbow and 2 bruised knees. i dont even know what happened! sometimes i dont pick up my feet enough to walk. Pick myself up and move on!

27 January 2012

another op...

Today i went for a routne appointment about my eyes and i come out with an operation. i have had a cyst just above  my eye and the doc was concerned about it what with the sillicone i have had in the eyelid thanks to the operation i had done last year on both eyes. So she wants to be cauciious and go in to theatre to take out the cyst.  Until then she said try eye conpresses to see if it will get smaller. She doesnt think it will go on its own. So another local injection in the eyelid!! it should be a doddle after the brow suspensions!

Replacement ci...

This  morning the replacement cochlear processor turned up in the post by recorded delivery although its a brown one rather than the black one i normally wear. But as long as it works thats fine by me! theres been no cutting out so far so good. :)

26 January 2012

cough doc...

Today i went to leeds hosptial to see a cough doctor.  Me and my mum went by ambulance car that we called up for they were very friendly and chatty :)  when we got there we went straight in! we had a chat about my past problems with breathing and coughing espeically since last year i had a chest infection and i couldnt cough up the mucus in my lungs. She connected a wire to my ear to see how my breathing was and it was fine thank goodness! she then told me about a cough machine that could help me with my breathing and coughing should i ever have a chest infection again. For now she can discharge me as im strong enough but she gave me a number to call them should we ever need them. i also have a cyst above my eye grr again! i have four weeks to put hot compresses on it to see if it will come out itself. if not we will have to go to hosptail to have it taken out. Next big appointment is newcastle in march for the usual tests. i will blog about it then.

25 January 2012

Peg Change

The nurse came to change my peg today as usual i have it changed every 3 months so i dont get infections. A button peg is much better than a tube peg as you get more infections with a tube one. 
Today the nurse couldnt get it in for some reason as its always gone smothly before!
she had to put a catheter tube in to keep the hole in my tummy open. she eventually got it in thankfully so i didnt need to go to hospital! it wasnt as painful as i thought it would be. But it certaintly scared me the fact that i might have to go back to hosptial to have it open again because the last time i had the peg put in i nearly died!! literally!

8 December 2011

dietian

this morning i had the dietian round for a check up. i am finally at a perfect weight of 9 stone 7! i know i was shocked myself! its  been a while since my dietian has been happy with my weight and shes finally happy! i am enjoying being curvy since i have been able to find closed to fit me!

on other news
i have a halper come round every thursday and she doees what ever i want to do like make cakae with. she gets paid to spend time with me but i dont mind as shes my age and she is a nice to have   company with.

16 November 2011

fed up of doca

ever since i have been ill i have been checked up on by docs weekly which im really fed up of now i wish they would leave me alone as i feel ok now. on another note i have my n5 which im still getting used to. Bradford are sending me a new one because of the smart sound which i dont like. the current one is mufffly and im finding it hard to adjust to. so fingers crossed that the new one is ok

10 November 2011

new n5

hello sorry ive not wrote for so long as ive been ill with depression. ive been in and out of hospital getting the right medicatioin.

on a b etter note i have got the n5 and its nice black sleek one. i got my old programme on it ane im still getting used to using it/ it came with a laptop bag of goodies  il let u know how i get on!

13 August 2011

out of hospita

i had to have medication for my condition as i was depressed at my condition so i had to go in to hospital to be kept an eye on i am out not and looking forwrd to my birthday tomrw

21 May 2011

update on Newcastle...

Three weeks after newcastle, I feel crippled from backpain from the walking i did there and i saw all the docs. they have began an intensive support to me in the way of depression towards my condition and things that have been happening since christmas such as my chest infections. My doc Mr Turnbull has been in touch with various other docs regarding my breathing, depression, my energy fatigue dietian etc..
i had been ok energy wise but going up to newcastle i dont know what happaned to me up there either bad hotel beds or the walking long car journey up? or the the worrying?  but something has clicked in my head and makes my body think my body is weaker than it is
 i do wish my body was the same as it was before newccasle at least i could do stuff easily such as things i cant do now.
im kinda worried for the future now as i worry about my aches and pains.
its even clouding the things i enjoy doing such as chilling out watching tv browsing the net and doing everyday things. sleeping isnt too good either BUT I am determined to get back to how i was at least before newcastle. 
I have been doing my physio exercises at home hopoefully they will help.  although it doesnt help that i have a new mattress to get used to which crippled my back again. its not easy recovering when you keep getting a bad back!!!
anyway thats all updated for now and hopefully the  next blog will be more positive!