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 which I have had since birth but I didnt find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then 15) I lost the 1st cochlear implant in my right ear after 7 years due to a bad, accuring 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


27 December 2012

Xmas is over...

Well christmas is over for another year! and im still stuck with the huge cyst on my eyelid it looks awrful that wont even put a pic on here til im sure i can get it sorted out. which wont be til Feburary urgh so long to wait! iits also really sore1 hope my mito eye doc can sort it out coz its obviously caused by the brow suspension. i dont know if he will have to take it out altogether or will just might be able to salvage it but il have to wait to Feburay til i get those result as il be off to newcaslte in feburary when il having  a full MOT on my mito! to see how or if my mito has got worse or is just remaining the same. i havent really had an episode for a while where i cant get out of bed. Before then i see the eye doc at he local hospital and she will collarbrate with the mito doc in newcastle to how the cyst is.

24 December 2012

merry christmas bloggers

17 December 2012

Another op urgh...

what is it with me and infections??  i have been fighiting an infection in my eyelid wihich is a big cyst on my lefft eyelid.
i have been trying to fight it off and make it smaller with hot conpresses, oral antibioitcs and eye antibitoics but to no avail its just got bigger and bigger urgh
so when we emailed newcastle where i had it done, the eye doc said it might be worth staying in and having another operation under local anestentic which i really didnt want.

They may have to take the whole brow suspention out alltogether which i really dodnt want either. but i hate how the cyst looks. its just about hidden by my fringe which helps
it doesnt help my eyesight any good either because the cyst is pushing the eyelid down. and im also worried about if it will droop more back to how it was before but hopefully they can try and save the eyelid from doing that. 

The face is the first thing that everyone looks at and all they see is a giant cyst on my eyelid and ask what its there for. When i look in the mirror i see it this big blob on my eyelid and wonder what other people might think of it. hopefully my doctor can salvage the brow suspension and get rid of the cyst. but at least it wont be til feb next year. il try and get a pic of it before and after
That is the plastic surgeons job to make sure it doesnt disfigure my eyelid coz the cyst is a bit big so hopefully they can get rid of it without disfiguring the eyelid.

12 December 2012

another cyst,,,

i dont know if i blogged this but i have ANOTHER cyst on my eye and its ever bigger than before. i had a previous eye appointment who said the cyst may be attacched to the stitch from the brow suspension ihad. well that was wrong coz it came back!!!
i had another appointment yesterday and im still everwondering if im gonna get rid of it coz its so ugly and right on the eyelid for all to see.
hopefully the antibiotics strink it! it seems to be pushing my eyelid down more which will tell u how big it is...
i wont dare post a pic coz its ugly enough :s urgh im just hoping it wont come to more surgery but know my history it probably will sigh but im even more worried about this cyst because its got some nerves in it so im worried it will hurt more!  im hoping it wont come to that thought but i dont see my docs til next year so i have to go through xmas with it belgh

7 December 2012

dvd...

We got the dvd of the mito meeting it was intresting watching it back again even when we were there!!
im slowing getting better from my depression

3 August 2012

another cold.,,

i cant believe i have caught another cold!!!!!! it takes me AGES to get over them

29 July 2012

eye appointment,.,.

yesterday i went to newcastle but we couldnt find a hotel to stay over night so we all had to get up at 7 am urgh i was sooooooooo tired!! i couldnt stop yawing the whole journey up to newcastle!!

we got there about 12 oclock and then we went to eye appointment and saw the eye doc patrick  he was happy with my eye but ihave to keep taking the drops 4 times a day in my eye and he was happy with the scar from the previous opertaiton.

Then we went to see Prof Turnbull for our yearly check up  he said he might have some work on the new mito website for me yay!!

Then on the way home we stopped off at the Angal of the North sicne it was a nice day  it was verrrrrry windy up there too! all i could hear were whoooooooooshes! It aws nice to finaly see it in person than drive past it all the time.

the weather was soooooooooooo gorgeous  u thought the sky was so blue!

26 July 2012

shit shit shit

i think from title im having a shit day!! im on these new pills and they arent doing me any good!! i just feel so tired and shit allt he time! i feel even worse than i did last yr!!! urgh on a good note we got some antibioitcs for my bad PEG infectioon so hopefully that will get better soon Why does dating have to be SO hard?? i mean for normal ppl its fine but for disbaled ppl its ten time worse when no one likes us!!! Is it sSOO much that i want  a nice guy just ONE nice guy to give me a hug when i get home?? urgh sorry for my rant!

22 July 2012

my new pet


Today i bought BOB a canary finch :) hes sooo cute and small he keeps bobbing about hence his name! :D heres a picture of him! he does these little chirps which i find cute!! oh i love bobbbbbb!

21 July 2012

new hairdo n peg...

Was a busy day yesterday! i had to be up early for the hairdressers i got a new fringe put on my hair coz my hiar kept annoying me with it always getting in my face luckily i suit fringes!
The nurse came soon after to change my PEG a week early because ive been having a few leakage infection probs so she took a swab as well as changing the PEG. its been dry so far.  Lets hope it stays that way!

here is my new hairdo  and ive been keeping busy doing lots of crafts and chiling out with my carer victoria we have been to the pet stop a few times coz im hoping to get a bird as a pet ive seen one i like but i hope they dont sell him before i can buy him!

14 July 2012

Wakes,,,

Yday i got back from wales it had been a long week!! but a nice relaxing week and the sun shined for once and only rained on the last day when we were going home!  some of the days we had to walk abount the towns which were tiring for me so we got the travel wheelchair out which we use "just in case"  here is a pic of me beside the sea

7 July 2012

my crafts


These are my fimo clay items that i made with my carer Victoria they go hard in 24 hrs!! hehe i think they are pretty good! if i dont say so myself im hoping to make more and sell them for  money for mitochondrial diseases research!

6 July 2012

chat mag article

5 July 2012

chat mag....

ooo the excitment im in chat magazineeeeee!! in the health section for mitohcondira diease and cochlear implant awareness yay!!!!!

4 July 2012

oooo excting!...

OOO its all happening this week!!! Friends and family birthdays gym appointment 12 week review went great im met a few lovley guys on dating site such as oasis and POF! who knows this time next month i might have a bf haha
AND tomorrow im in chat magazine the excitiment im buzzing right now haha :)

28 June 2012

newcasltes new MITO website!...

We got the newsletter from newcastle hospital today and it had pics of the mito info day i can just make out my mums back n my head and my dads head hehe cant wait to see the new website and the videos on the mito website!!!!

24 June 2012

music.... to my ears,...

i have been hoping for so long to get a audio cable that i can listen to music AND  listen to what  is going on aaround me and its finally here!!!!!!!!!!!!!!! OMG i was sooooooooo pleased ive been listnening to the radio on my phone and the laptop and i had a try of my brothers ipod!!
it was sooooooooooo cool! hehe
cant wait to get my own ipod now for my bday! on my last ci processor the 3G i had a audio wire that wuold only listen to music NOT what is going o n around you as it can be a little dangerous esp if ur out and about and dont know what is going on around you. The road or some rapist creeping up on you at night time! Either way im so glad! ha

20 June 2012

buses....

if u have mitochondiral disease its so hard to get on trams trains and buses!!! i mean most of them are disability friendly,,.,
except drivers!!
Now i havent been on  bus for a looooooooooong time because my dad took me to appoitnments or we got a taxi or victoria my carer took me to gym or took me out to town so now this was the first time in ages that i had been on a bus since blackpool a few months ago!
Anyway we went to the docs for a swab coz we think i have an infection inside my PEG  area  which is making my stomach ache when i move! The nurse told us theres no way its down to the saline we didnt change n it was brown n yellowy as it can last up to 3 weeks without change! so we got the swab for the right medication!

Then we went up to the village by bus up the road n i just couldnt find the energy to get off my bloody seat on the bus!! i was at my best n energetic but i find it hard to get off low chairs etc this bus chiar wasnt low n there was a pole to help me up but i just couldnt do it! mum tried to get me up but she had a bad arm so she had trouble getting me up as it is!! with my new weight gain i was bloody heavy now lol not light like i used to be before the PEG when i was 5 stone!

The bus driver was rude n impatient to set off so we had to shout at him to stop!  so we could get me up and get off!! the journey there was ok we had a ncie driver but then on the way back we had a moody one who looked like he couldnt care less about his job n wanted to go home! lol  n he couldnt even wait 5 bloody mins to let me get up n get off!! even thought we pressed the bell n told him to stop! We got off eventually!

17 June 2012

using the "mito" card...

There comes a time where u have to use your "mito" card  to get what u want!! lmao
Then mum used it on 2 guys who wanted to date me but i dont like them...saying u are mkaing my daughter ill please stop pestering my daughter and her mito conditon and please stop texting her they feel guilty n go quiet
Quality laughter time with mum!!! hehe x

16 June 2012

dating with a disability...

WHY is it so hard for  a girl of 26 nearly 27 still single because guys ant be aresed to go out with u if u have a disability?? its not like im mute or thick!?1 im quite smart and like most things like films n going out !! IM A NORMAL GIRL! whos just living her life to the full but it would be nie to have someone to share it with u know...? its so hard because over the last 27 yrs ive had ONE serious bf who was all the way from bournemouth so that was doomed from the start!! i shoulda known it wouldnt last really long distance rarely dont i know its possible but its just crap because u have to pinch time here n there n i want someone i can ese every day wake up with them etc...


im not the sorta girl who wants one night stands or a quickie here and there?? why do guys assume u do coz they think you are hot?? i went on one of my dating apps on fb yday everyone of them crashed out wnet i said i was deaf.... urgh i really gi ve up im gonna be a cat lady or a brid lady sine im planning to get a budgie lol


MESSAGE TO GUYS OUT THERE IN THE DATING WORLD! PLEASE INFORM GIRLS OF HWAT U WANT BEFORE GETTING TO KNOW THEM OR GIVING THEM UR NUMBER!!!!!!!! sick of chatting to guys we got stuf in common then .... BAM they dont want a bloody  relationship they want a drunken fumble?! arghhhhhhhhh seriouisly grow up guys!




















15 June 2012



11 June 2012

healin well..

 at least it aint painful!

healing well...

it not even painful n il have a nifty scar !

9 June 2012

newcastle op update..

hello all here is my update for u from newcastle!! we went on a few days up north first before the hospital we first went to south sheilds for a bit of beach holiday sea air!!  my dad won a mario teddy on the grabbers! lol

we had a walk around the beach area and the fairground but it was very chilly wind and little sun shining trhough clouds we were lucky for it not to rain! The sea air certainly did us good as we were out for the count!

We then went on to south shields on Thurs which was a bit sunnier we went for a walk around the beach in some amusments etc as u do! mum won  £5 on naughts and crosses! ha !

It was a bit chilly so we decided to go in a pub where it was cosy n warm and watch the French open tennis! nadal was playing he always wins urgh pretty boy lol

We got back to our premier inn just outside witley bay and I discovered a candy floss maker!!!!!! i was in heaven!! all u can eat and candy floss for a £1!!!
haha

it was a fun days away exploring these holiday towns witly bay n south sheilds then we had to get to new newcastle to get down to business!! We got up at 8 am yawwwwwn then we made it to hospital for 9 am and i was in theatre by 10am!

In theatre afte sticking a few locals in my brow he managed to get he stitch that was causing my cysts! so i have no need for another operation to reput the brow suspension in!! yippee!
he then put 6 dissolvable stitches n and stuck a tight firm patch on me as u can see from the photos! he said it was all fine and we were to come back in 6 weeks for a check up! In and out in the space of an hr which is pretty good for Newcastle! The nurse plonked me on a seat to recover and gave me a cup of tea which was bliss coz i hadnt had a lot to eat apart from a sip of tea and some wheat bix as we were in a rush to get to RVI!Anyway thats all done and dusted for another 6 weeks! and glad that ugly zit of a cyst has gone! il have a nifty tiny scar hehe!
We had enough time to get our meds and get the hell outa there by 12pm so we popped in on my nana which is where we saw lil baby evie :D i got evie cuddles i wanted to take her homee! ha

3 June 2012

hot weather..... scorcher....

wow what hot weather we having at the moment 10 yrs ago i would have been great with the heat coz i was skinny n loved the warmth now ive put on weight im a bit wiped out and sweaty from just stiting in the sun for half an hour!!!
When i was 5st that was nowt i could spend 2 hrs in the sun n not break a sweat!  now im a 10 st healthy weight and should be this weight the heat seems to get to me more i over heat and sweat like mad so i have to keep drinking n putting protection n wearing airy clothes to keep cool!

Michelle my new carer came at 11am we went around brighouse trying to find the craft shop ive been to in the past for about an hr then we gave up n went back to town for some shopping

i bought some toggles for my bags im gonn amake from my knitted quares but mum thinks i should make a blanket out of them and give it to charity waht do u think??

do i do a blanket which is what i orginally planned or do i do bags lots of them out of the squares ive got! lol  who knows although the last one i did last quite a whitle did it got tatty n holes in it  n we had to throw it away!

2 June 2012

RIP uncle dave

We travelled to retford to give my uncle dave a good send off!! it is so sad that he had to pass away with dignity when he was just 62 4days after his birthday..
he had liver cancer he was diagnosed only a few weeks ago and he was told there was nothing they could do so he was to get his affairs in order.
We saw him a week before he passed away he was sat up in bed watching the moter racing on his tv bless him he was the cheerful chappy he always was and was laughing and joking

its sd that he caught a chest infection n his lungs were full of fluid but they thought it wasnt worth draining since he was so close to death :( they could only make him comffortable and he passed away last sunday we went to his funeral at his local church in retford where his daughter and step son gave a lovley speech about him it was so heartbreaking for them and for all who knew the family
u will never be forgoten DAVE RIP

At the wake at the Reindeer pub i was so exhuasted and tired at the prospect of getting up early and not having enough sleep that i tripped over a TINY step yep i did in front of everyone!!! but who cares they all knew me from a baby etc so they know exactly what ive been through which is a comfort i guess! Got a huge bump on my knee now! lol

Also had trouble getting in the taxi coz they had a huge step up but instead of going forward and ppl hurting my arm giveing me chinese burns!! i decided to go in backwards
and lift myself up on the seat which was easier :) thank god for family friends eh haha

We went to the hotel pub for a while after the wake and we didnt get to bed til about half 11 by then my parents and brother were drunk as stunks lol and mum almost fell in a bush coz she was all over the place! think i was the only sober one there to be honest lmao but someones gotta make sure they get to bed!!

Awoken at 12 pm still tired couldnt sleep in the car so played bejewlled on my brothers ipad while he was alseep throught the journey nursing a hang over when weill he ever learn? haha

anyway i was just glad to get home and get my pjs on and have a night in front of saturday night tv!! hopefully il be less tired tomrw

28 May 2012

major error!!!

oh my freaking god i forgot my saline for like 4 weeks!!!!!!!! i should be changing it once a  week no w ive ended up with this eek!! it shud be clear and 4 mm of saline  in!!

No wonder it was sore lol

25 May 2012

scar

i have been cleaning out my room and all the rubbish i dont need any more and i came across  my pictures of when i got my 1st cochlear implant here is me showing off my scar after getting my bandage removed! it looks huge  but it was worth all the soreness for 17 years of hearing my family n friends n music! the picture below is me showing off the cochlear implant mascots that they give to the kids after the operation this was  in 94 they have got bigger since then i assume they are a kangaroo and koala bear because they got the idea of the cochlear implant from the australians who did it first! i was in for a week n i had my op on the 24th febuary 1994 i had the 2nd one after i lost my 1st one to a bad ear infection and i didnt take any pictures of that one i assume coz i was a teen ager n i didnt want my pic taken n it happened so fast etc!