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


28 December 2009

So fast...

Christmas has come and gone really fast this year... I guess when you are a kid it takes agesss before Santa comes and you just want to open your presents! I had a nice time during Christmas but it just went by very fast this year for some reason. I have been keeping myself preoccupied with a painting kit I got for Christmas.

My eyes have been very tired over the christmas period and I'm feeling I must do the eyelid lift procedure and that I must at least give the doc a chance to talk about it and what it involves. even if it scares the bee jeebies about of me.

A New Year A new start.

24 December 2009

Merry Christmas Everyone! hope everyone is well and having a good "hearing" christmas! I am planning to spend christmas with the family and it will be a fab day :)
xxx

21 December 2009

Snowy Feet brrr...

As the snow arrives, I am trying to keep warm as possible. I have been out in the snow on outings to my friends and family some near some far away and the car has been freeeeeeezing! My body seems to warm up apart from my feet. My feet take a while to warm up even with 2 pairs of socks on! At least it has stopped snowing for now and the roads are getting gritted! I am looking forward to spending christmas with the family and doing the usual xmassy things! :D

14 December 2009

Silly hospital confusions...

At least some good news for Christmas, I don't have to see the nurse every Monday til January because my mum knows how to unfill and fill my balloon in the PEG. My mum has seen the nurses do it themselves plenty of times even though they don't have a clue about this type of button PEG. They actually have to look through instructions on how to do it. I don't know why my mum can't do it all the time and have a check up of the nurse on the phone?

Then in the mail today. an appointment for me to have an eye check up in Newcastle in January when I'm due to go in March?? When the agreement was to go up to Newcastle in March to have my check up on my condition, my eyes AND my PEG. yes it's always one long day there... mostly sitting around waiting to actually see them then it's loads of tests (which I'm quite used to that it's become a drag...) I assume they wanted to discuss the eye lid procedure. (which I'm still freaking out about) but I will listen what the eye docs gotta say but in MARCH! Even though I'm freaking out about it, I know I have to do something about my eyes. Even if I don't like the fact it's surgery near my eyes, but i'm hoping it will be the LAST procedure I need doing because of the condition. Then I can relax for the rest of my life.... maybe... I hope...

Either way I'm looking forward to christmas and forgetting about my medical worries have just have funnn!


11 December 2009

Shake, Shake...

Last night I was watching a documentary on bbc3 about a man who had been paralyzed from the neck down. At one point of the documentary, these nurses had to shake him on the bed laid down to get any fluid off his lungs. I had totally forgotten about when I had that done too when I was in ICU in 2007 and I had pneumonia. Even with a drain in my lungs to get any fluid out my lungs, I had to do this shake too. The nurses put your hands on top of your chest and shake up and down once or twice. I hated having it done because they had to push very hard on my chest and it wasn't very nice at the time but eventually it did the trick and got the fluid off my lungs. Like i say I had totally forgotten about that part... Some parts are quite clear in my mind and other times I see something that reminds me about that time. I am very grateful for it though for the docs and nurses at the ICU unit at Bradford Royal Infirmary.

6 December 2009

Ringing...

Every now and again, I get ringing in my ears, even with the CI on. It's usually set off by lots of different noises going on! Such as a loud TV and my parents trying to talk over it. Or a disco and lots of people talking at once. When I get this ringing I don't when it will stop , things can make it louder such as running water out of a tap or if i switch my cochlear implant off. Which I find strange.. you switch the CI off, it gets a bit louder but when you switch it back on, its still there but quieter. It can go on for a long time or a short time.
Last night It was set off by the TV having to be turned up because my dads going deaf... old age.. hehe I tell him to use the subs but he doesn't he can be there going TURN IT UP! TURN IT UP! And I'm there going "It's loud enough!" How ironic! :P
Anyway, the ringing went on til 3am after the loud TV and parents talking over it. I eventually got to sleep, but I still have it at the moment, hopefully it will it fade out soon.

5 December 2009

Headaches...

With my eyes getting strained, I am experiencing headaches more. I can have good days and bad days. With the bad days, where i have to go rest my eyes and have a sleep. Hopefully if i have the eyelid op, that will solve that part that i don't have to strain my eyes anymore. But I know that the eyelid lift wont be for a while yet, maybe late 2010.

But today I have been listening to Christmas songs! And all the christmas fairy lights are up! The Xmas tree will be later this week. :)

1 December 2009

Funny CI moment...

I put my Christmas socks on this evening, hehe with little santas on, and when ever I walked around, there was a *tinkle tinkle* I knew what it was. But when I'm sat down, and it *tinkles* I'm thinking what the hell is that! Then I'm aware I have BELLS on my socks! hehe Silly me!

In spirit of Xmas..

I have changed the background of my blog! only 25 days left to christmas! :) Bring on the families, festive food, Xmas music and presents! woooo!

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.

25 November 2009

Swine flu jab...

When I go the letter to have the Swine flu jab, I originally wasn't going to have the jab done but I went to the docs today for a different reason and they recommended I had the Swine flu jab done. I didn't want to risk being hospitalized with it if I ever got it so I decided to get it seeing as I was there anyway. so ill have a dead arm for a few days AND its on my sleeping side (i can never sleep any other way than on my right side) Prepare for a grumpy Laura without sleep! but its better safe than sorry and kept healthy as I could possibly be!

16 November 2009

Nursing a chore...

Every Monday since I got the new button PEG i have to get up early to see the nurse that comes and changes the water in the balloon in the PEG which has to be done due to the saline water evaporating. The nurse is teaching my mum how to do the saline water so that she can do it and the nurses dont have to come so often which i will be glad because every time they come round they make me think i'm this ill person which I'm not where my mum and the nurse get ov bags of medical stuff that mum keeps. Things like the water syringes and the creams and the tubes for my PEG. it can feel a bit endless sometimes but I know the nurses are only for a short time. Im not looking forward to getting my PEG changed after Christmas in January. The nurses assure me it’s not as bad as having the tube PEG out (which by the way was horrendous) I'll believe it when it’s done ha ha. I'm glad to get out of the house after christmas too when I get to go back to my volunteering. I hope Christmas doesn't take it's toll on me and I want the holidays to last!

For now I'm keeping busy with the tapestry!

9 November 2009

My Pro/Cons and rules for the cochlear implant...

Pros

You are still deaf without the external part on so you are still part of the deaf world but you just have the beauty of both hearing and deaf worlds.
I can listen to music
I can hear my family and friend's voices and still lipread
I can hear the TV without looking at the screen (sometimes without subtitles!)
I can hear a person without looking at them
I can hear birdsong, rain and all kinds of sounds
I have good speech
I have had my cochlear implant for 15 years now *even if i did have 2*
I can switch off whenever I want if i hate a sound or just have a headache!
Having the BTE small and discreet
I can tell the difference in accents and voices and different sounds.
It's not 100% hearing but it's good enough and clear enough once you get used to the mappings.

Cons

Group talking can be a pain with lots of people talking at once
Background noise such as loud music or lots of talking in
The operation eek
The programming of the ci. i hate having my map changed.
You need be careful of your implant area ie dont bump the area very hard!
When i'm in the car on the motorway, all i hear is the roar of the engine! argh

Other things to know about when you have a CI.

static electricity - ie a tv that has been on for a long time or clothes, you need to be careful not to touch them with the wire of the ci.
Air travel - you need to switch off the cochlear implant when the plane is taking off and landing, i tend to leave my cochlear off the entire journey from switching it off before getting on the plane and turning it back on gain when Im off the plane (cant be too careful!)
Meningitis- before you get the implant, or even after make sure you are protected against Meningitis by getting an injection.
Ear infections - this is an urgent matter, if you have an ear infection go see your cochlear implant doc as soon as possible.
X- rays - are fine although I usually take external part off for an x ray.
Any kind of electric surgery is a no no. If in doubt, consult your cochlear implant centre.
Shop security systems - are fine I've never had a problem with them but if you do,, you can show them the cochlear implant card
Airport security systems - these are different to shops and will scramble your mapping so ask the airport for a frisk search instead. I have never had a problem with this and airport understand. if they don't show them the cochlear implant card.

If in doubt with anything, contact your cochlear implant centre and they will always be happy to help you! :)

Hope this helps! x

4 November 2009

Gloomy days...

The nights are drawing in now an getting dark early, its sooo gloomy, it makes me feel down! But I am much looking forward to seeing and hearing the fireworks and christmas is soon too.
I have been keeping myself busy doing tapestry and wasgijs (look it up if you arent aware of them)
I have made a group on Facebook for mitochondrial people to join but so far no one has joined...
i feel a bit lonley regarding the ocndition because I dont have anyone to talk about it with apart from the docs who dont have it but research it Id like to see how other people cope with it etc maybe I really am a rare gem.
I get a lot of cochlear implantees on the blog but no mitochondrials even if it was just one person, I would be happy because I'm not alone. There's not a lot of people out there with the same condition I have but if there is, I haven't found them yet! I'll keep trying anyway!

1 November 2009

knitted character...

Halloween is now over, I look forward to Bonfire Night and hearing all those bangs, whistles and booms of the fireworks!
The nurse is coming over tomorrow to change the water in the balloon of my PEG. This is the balloon that keeps it in my tummy! I get this changed once a week, it can be 2 weeks but the nurses in our town say 1 week because the water in the balloon can evaporate.I
I'm still working on wasgij's and tapestries alike as well as drooling over Harry Hill's TV burp's knitted character! hehe hes well cute! :)

25 October 2009

Update on the new PEG...

I have come alone well with the new PEG (picture in the last blog) although I still haven't got acustomed to using the tube that you connect to the PEG to flush water through yet. It's not so easy when you can't bend your neck down enough to see your tummy! So Mum has been helping with that til I get used to it!
It is rather strange not having the tube though, I still act as though I have it like I expect it to be there and stuff it in my trousers or up my top so its out the way of whatever I'm doing and its not there anymore. Almost like a ghost tube! hehe
But I am still rather pleased with the smaller, more discreet PEG despite the horrendous ordeal I had to go through to pull the last one out!
Hopefully, this one will be better than the last one! :)

21 October 2009

The difference in PEGs...

The difference in peg change!
The one I had from May 2007
to the one I had changed in October 2009
It was worth it hence the pain. Its a different peg though so Im still getting used to it!

The newcastle PEG part two...

After my parents had something to eat, we went on to the next section of the day which was going to the ward where they were going to do my PEG change. Yet more endless corridors of the hospital! We got to the ward where we sat in the waiting room for an hour after we signed in at the reception. The nurse that we saw before was going to do it for us so she took me and my mum to a side ward room and told me to lay on the bed. I wasn't sure what to expect... She told me it would cause some discomfort. I thought I was going to get an injection to numb my tummy area but noooo , she put numbing gel that did bugger all because when she started PULLING (yes literally pulling the damn thing out of my stomach) when I catch it on something at home, does hurt but that was nothing compared to the excruiating pain of when she was trying to YANK it out of my stomach! I tried to stop her pulling it but mum pulled me back and I just burst out crying because of the shock of the pain when it finally popped out of my stomach = and she put the new one in. Just like that, it was all over and I could relax for a bit on the bed! The nurse put a bandage underneath the new PEG because some blood has come out when she pulled it out. I didnt relax for long though because another doc came along who works with the mitochondral doctor Mr Turnbull so I had a few more tests to do to keep up to date. Like walking on a straight line and checking my eyes etc... The doc wanted to talk about doing my eyes again but I was in no mood to talk about doing another procedure!! No way! After all the tests were done, we were free to go home and I can chill out and recover and not have to think about anything else for a while! Although on the way home, I got thinking, in my lifetime with this condition, how many more proecedures will come up? Now it's my eyes but what else could crop up? :S It's gona be tough but i'll just have to get on with it when the time comes. For now, I will get used to my new PEG!

The Newcastle PEG part one...

It's been a looooooooong 2 days!
We traveled to Newcastle yesterday and stayed over night at a travel lodge hotel. Not that the bed was comfy, it was solid that I couldn't sleep! They did have the internet so I could chat to Gwyn and check facebook thought! I can't seem to go without checking Facebook every 10 mins! Even on my phone much to the dismay of my mum.
Because the bed at travel lodge was solid I got no sleep apart from waking up and twisting and turning and trying to get comfortable but it was no good. I was a complete zombie today which could be a good thing when you are walking endless around the long corridors of Newcastle Victoria Hospital! Has any one ever been there?? the place is a maze especially now there's new parts of the hospital has been built.

Part one of the day

We walked the endless corridors of the hospital to find the ward where we would be meeting a PEG doctor and the nurse we have been talking to over the phone. (mind you I liked her til she yanked out my PEG, more on that later...)
Most of the day was waiting and waiting, but when we got in, the PEG doc and nurse talked to me and m parents about the different kind of PEGs there were and the advantages/disadvantages of them etc, I got a bit upset talking about it because who wants a PEG at 24? I just didn't want it at all! But not having one wasn't an option because of my swallowing when I'm weak, it can be a lifesaver and keep my weight on. So my parents decided on the PEG for me, the PEG we chose is eaiser to manage at home because we are 3 hrs away from Newcastle, we needed the easiest to manage at home with the district and abbot nurse. We couldn't get a PEG where we have to go all the way up to newcastle if there's a problem as the hospital in Huddersfield don't do button PEGs, just the tube ones!
We then went for something to eat where I had to be nil by mouth which I had been most of the day anyway because the nurse told me to have a light breakfast which i did at 9am. By 1pm, I was starving and watching parents have their food and a nice cuppa tea was killing me!!
They were so meannnnnnnn!

continues in part 2...

18 October 2009

Newcastle awaits...

I'm all set for going up to Newcastle and not really looking forward to it but it will be good to get it over and done with! I'm not overly sure what will happen when I get to the hospital but hopefully it wont be too bad and they wont fiddle about with my PEG too much (well, apart from the pulling the damn thing out and putting a new one in...)
but im hoping it wont hurt too much what with the numbing ness of course...
I will be back with a brand spanking new small PEG which won't bother me like the tube does! I will post the difference on here when its done. I'm pretty sure that it will be very much long awaited!
Gwyn has been around for the last few days, helping me forget about it, going to the cinema we saw UP which is was very funny. Id recommend anyone to go see it! :)

11 October 2009

Not long now...

There's just a week on Tuesday to my PEG change procedure at Newcastle, I'm still not sure what to expect on the day. All i know is that on the morning I'm going to see the PEG doc and discuss some things such as which type of PEG I want, what's going to happen and the doc to have a look at my PEG and PEG site. In the afternoon, I will have the change done which takes about half an hour or something like that. Hopefully it will all go smoothly with no problems because I have to go home to Huddersfield after it's done. Any problems I may have, I would have to go all the back to Newcastle because they did the procedure and the Huddersfield and Bradford NHS don't work with the PEG that I intend to choose which is the press- stud type of PEG.
The PEG nurse will keep an eye on it though so its no worries! I hope!
As far as i know, I get the procedure done by a local which I'm not looking forward to having after the experience with my muscle biopsy. Hopefully I will cope better with this one! No shivering and crying!

8 October 2009

insomnia...

I've been having some trouble sleeping, the last few nightsI've only managed to close my eyes but not actually sleep... I had a bout of insomnia when I was in hospital too and finally fell alsleep when I just could'nt keep my eyes open because I was that tired. Hopefully that will be the case this time but I dont really want another sleepless night. I'm not really worrying or thinking about the PEG procedure or anything else so I don't know whats causing my insomnia :0S
Hope fully I will get some sleep soon! I certainly need it! Im not focusing very well without it!

5 October 2009

My opinion on a CI YouTube video...

My brother told me about a video on youtube and told me to watch it all so i did...
This is the video


While watching it, i felt a bit angry but then I watched it to the end and saw his point. But I disagree with his point. If anyone waited til 18 to get a cochlear implant, wouldn't it take longer to adjust to sounds if they have been deaf their whole life? If you had just gone deaf, it would be easier to adjust back to the sounds through a cochlear implant the less time you have been deaf whether you are under 18 or over 18.
I think that the earlier you have the implant after going deaf, you are most likely to have better speech skills after speech and language and adjust to the sounds better. The longer you stay deaf before getting a Cochlear implant it can be harder to get back to hearing the sounds and longer to get good speech.
I went to the cochlear implant meet in September, I met a child and he had his cochlear implant when he was a baby and I've seen videos of his positive progession of speech and hearing and hes getting better everyday! I know that some parents can find the decision very hard when its a child and they want the best for them. Either way, whether or not they have the cochlear implant, we are still deaf and part of the deaf community and we have the best of both deaf and hearing worlds. I dont hate my parents for giving me te cochlear implant, I LOVE them for it and they made the right choice for me to give me the cochlear implant when i was 9 years old. If they had left it til I was 18, I probably would have been too scared to go through with the operation and I dont think id have the good speech I have now. I had the help of speech therapists and teachers of the deaf when I was going through the cochlear implant after stage and learning to hear with it. I know my parents made the right choice and they don't feel guilty and neither do I!

29 September 2009

Confusion...

WHY can't hospitals communicate?? Today I got upset over the fact I might have to have a camera down my throat to take the PEG out but the dietican has told me that wont happen. Why cant they just tell me the right thing thats gona go on when I have this PEG changed. Its giving me sleepless night over the worry of might what happen.
I want this PEG thing over with now really, and I can think about getting out and about again and going back to volunteering.
This lady over the phone told my mum I was going to have a cam down my throat and having the balloon *CUBBY* PEG and I stupidly looked it up on Google only to find a video of how its done which kinda shocked me that it can look that extreme! :0S
But thankfully when mum called the dietican up at Newcastle and she said I wont be having the camera down my throat and I can choose my own PEG.
How pathetic am i getting upset over it eh?

Groundhog Day...

I've been feeling somewhat out of it the last week or so... like somethings different and I don't like it. I'm not doing much at the moment and im lying in late every day, probably coz I don't see the point in getting up sometimes because the days just gona be the same again.
Hopefully after the PEG change has been done and I've recovered from it, I can go back to volunteering at the school. For now I have a tapestry to do which wont keep me buy for long because its only small but I shall just have to buy more off ebay if i can find any!
For now, its pottering round the house...

28 September 2009

The date...!

I have finally got the date for the PEG procedure. FINALLY! It's on 20th October so i don't have too long to wait. We will have to arrange to stay over the day before in Newcastle in case we need to be there early.
Last appointment we had to be there for an morning appointment and with a 3hr journey ahead of us, we had to get up at 6am and feeling crap! So now we know what to expect on a time frame, we want to be nice and fresh for the procedure.
I'm not big on idea of the local anesthetic but if thats what I gotta do to have a tube free belly then I'll have to put up with that stinging pain of a needle!
I just hope time goes by fast and I can get it out the way and dont have to worry about the PEG getting in the way of anything again!

24 September 2009

It's all happening...

It is! woohoo
The PEG nurse in Newcastle has been brilliant compared to the bradford one. She's helped us with everything!we needed to know about PEGS! She has sent us the appointment date for us to go up to Newcastle. Im quiet nervous now because it's been a miracle getting it all sorted etc
just gotta hope it all goes well with the next button peg turns out to be better than the tube I have at the moment. It will be more easy on the eye and the tube won't get in the way again which I am pleased about.
hopefully the appointment will be ASAP and I don't have to worry about it as much.
The only fustrating thing is I cant bloody find a thing about the microvasive button that im going to have anywhere on the net! It would be nice to know what to expect!

18 September 2009

Leaflets....

I got some leaflets from Newcastle about the PEGS i.e the one I have at the moment and the one I plan to get so I've been reading through them today. It all seems normal to me to be reading these things about things I;ve aready been doing with my PEG.


On another note, mum found some a family of 2 frogs in the garden! hehe


on this picture it looks big but this is a close up if u back up its very tiny! :)


17 September 2009

Finally...

We are getting somewhere with the peg situation! Mum has been talking endlessly to Newcastle nurses since Huddersfield or Halifiax dont do the button peg procedure (dont ask why) I was going to have it done at Bradford since it was closer than Newcastle but when my mum talked to the nurse at Bradford, and the nurse there was like "why does she want the button peg? and talking about the fact that PEGS can stay in for 9 yrs!" which is untrue. I want the button peg because im 24 years old, why should i have to live with a tube hanging out my stomach when I don't have to?
We thought she didnt have a clue what she was talking about so we decided to go to Newcastle where they know me and my condtiition well and I have it done in 4 weeks as a day case. I feel reaasured at Newcastle that they look after me well, although i wish i could say the same for bradford. No one seems to communicate there and im passed around like a bloody plate of food! it's not a nice feeling. Im grateful for bradford hospital for giving me the cochlear implant but every other time ive been in there it's been a disaster such as my landing in intensive care for 5 weeks because a nurse told me I could eat food when I shouldn't have.
At least I dont have long to wait long now and I can get my PEG and the infection sortedout. The nurse at Newcastle told us that the infection is due to having the PEG tube in too long as the inside piece under the skin of my stomach can crumble.
I honestly don;t want a tube falling out of me!!! I'm just glad im finally getting the infection and the PEG sorted out! :0) and be pain free! I don't know what date i'll be having the procedure yet but at least it will only be a day case and I can sleep in my own bed! I'm not looking forward to the local though :0S
Watch this space!

16 September 2009

Can it get any worse...?

The peg situation isn't getting any better.. now it seems to be getting worse what with the skin around my peg :S
I found out when i was researching PEGS online yesterday that any long term PEGs should be changed every 8 months, so we are asking questions about why no one is keeping an eye on me and the PEG situation.
  • why am I not getting looked after properly by the NHS?
  • why am I not getting the proper aftercare after my PEG operation, etc check ups?
  • why did i not get my PEG changed after 8 months as rules say?
  • why do my NHS hospitals always wait til the worse senario before finaly doing something about it??

Now i have an infection with bad skin round my PEG which i have had for weeks because no one has been keeping an close eye on my PEG situation. which makes me so mad that I have to go through this pain in my PEG coz the NHS doesnt have the proper facilities to look after a bloody PEG?? My mum has been looking after it for me, if she can do it, why isn't there any one proffessional out there to do it to keep an eye on it if there maybe an infection on the way? I have a lot of Qs and no ones giving me answers?! its got me cheesed off that I should't have got this infection if someone was keeping an eye on my PEG and making sure everything is ok with it!

How rubbish is it that I've not really seen a PEG nurse in the 2 yrs when I first got my PEG and then nothing til i started getting my infections!

I am angry and i want answers!

14 September 2009

Cochlear Implant meet up...

After a crap week of downness due to the death of Grandma and my bad PEG, I could have done with some cheering up and thats what I got when the boyfriend came up for the weekend :) We went to the Cochlear implant meet up and a lovely BBQ at one of my family friend's house!

We went to the cochlear implant meet up of families at a Huddersfield pub. Although, only 2 other families made it to the meet apart from myself and the family that organized the meet up but we had a good after noon of sharing views and opinions of cochlear implants. We had hoped more would come but with issues with trains and short space of time to organize it were factors but we got to meet 3 lovely families out of it!

Hopefully there will be more at the next one that we plan to do next year which give us more time to plan it and more time for people to organize to get there if they can.

The PEG has settled down at bit, I'm still using these silver patches on it which makes it sore but apart from that, it's better than it was! I am also hoping the "button" PEG procedure will be soon too. I'm still waiting for a date on that.

I've also been doing some boing exercise on the Wii yet again to try and built some muscle on me, it might be a lost cause though what with having a muscle condition...! But it's worth a try!

8 September 2009

Silver Patch...

I have since got silver patches from the nurse for my PEG to get it better, it's a bit sore and stingy but I've had to take painkillers for that. Last night I was up most of the night unable to sleep, and i've had to be up early for the funeral of my grandma so ill be getting some sleep tonight! I hope!
I am also looking forward to the C.I meetup in Yoriskhire this saturday! will be good to meet others with Cochlear implants and get to know their experiences and meet in person!

2 September 2009

Busy Times...

On my first note, I want to say RIP to my grandma, who sadly passed away on 1st september. My parents are busy with funeral details and the funeral is on Tuesday. I'm glad she went peacefully after a battle against stomach cancer and in a hospice rather than hospital which no one would have been aorund her. I like this pic of her because it;s how she was at home with her headscarf on and she looks all cheery!

On my medical note, my peg is looking better after having some dressings and special cream on my peg site. It could look even better after some more dressings i guess, and faltten that wart type ball that was growing out of my PEG site. I spent the night being woken up by my parents and my brother because the feed pump kept beeping! I had enough of it by 3am and told them to just turn it off! Only to be woken up early by mum in the morning because the nurse was due to come so I got nooooooooo sleep whatsoever!

I am still waiting for a date for my "button" peg procedure which might be a couple of weeks. Apart from that just lots of flopping about!

28 August 2009

Exhausted...

I'm still exhausted and tired from my stint is hospital when I left last week, this morning I went for a blood test to send off to see if my liver count is back up to normal again. I hope it is! I don't want another medical problem! I will find out in a few days when it arrives at the docs! I'm getting quite used to blood tests! That's not normal! :P

The Abbot nurse also came about my PEG this morning too, she gave us more information about the "button" PEG and it would be better to have that instead of the tube one. It would involve a day stay in hospital to take the tube one out and put a temporary tube in. A week later, the nurse will exchange the temporary tube for a button PEG. I may not need to go to Newcastle for it so that's something. They will give me something that will make me go all sleepy and woozy when they take out the PEG because you don't wanna be awake if you tug on that. It can be uncomfortable!

I got upset while the nurses and mum were talking over me, because I never expected to have the PEG in this long and it's just a bit disappointing really. It was only going to be a temporary thing and now it's seems like it's becoming a permanent fixture of me right now. But at least having a button PEG will be smaller and more discreet than the tube one I have. I think the tears were also because I'm still so tired from leaving hospital too. I still don't feel 100% back to me yet.

A PEG is not really something you want at the age of 24, but I guess I'll have to put up with it a bit longer...

27 August 2009

Button or no button...?

My mum was takling to Newacastle hospital this morning, she was tellling her about my tube PEG, the nurse told my mum, in shock that do i really have the tube PEG at the age of 24?? and that I shouldn't have to put up with having a tube one at my age. So they were talking about the possiblity of giving me a"button" PEG which is one without a tube and less horrible to look at really... which is always a blessing.
The only thing I'm NOT looking forward to is having the local anesthetic to "yank" it out! and put the new one in...
I know it's only in the disccusion mode at the moment though but I was hoping I wouldn't have to have the PEG in long but as time goes on and it seems it is getting more possible it may be a permenant fixture of me for the time being. Oh well!

26 August 2009

Recovering and Article...

I have just got back from the doc's because of that wheeze in my chest. The doc told me that it should get better in time and I need lots of rest and I will be back to my normal self in no time!
Apart from coughing up all the time which is making my PEG area so sore. :( we got cream from the doc for it but I can't use it til Friday til the nurse shows us how to use it! Every time i cough, it seems to hurt my PEG area but I can't stop coughting... I also have the blood test to see if my liver function has gone back to normal from my time in hospital. I hope its back to normal!
On a good note, the article about my 15 yrs as a cochlear implantee has come up in the magazine "here and now"
here is the link if anyone would like to read it. HERE AND NOW page 16.
Now to rest!

24 August 2009

Cosy day...

The weather is rain pouring down, I can hear the rain coming down from the guttering again. I'm snuggled in my duvet on the couch following my discharge from the hospital. Last night I had a heavy chest which i keep trying to cough out but it's just making it! The Abbot nurse came today for the PEG and put a HUGE dressing on it. It's still sore too but the nurse is giving me yet another cream that should help with it. How many more creams and antibiotics can i take?? and its still not getting better?! argh they SAY my PEG is on the mend but the soreness says otherwise!

I'm also going to be put on 1500 calorie feed instead of 1200 to help me get back to strength and stronger. Hopefully it will work, i'm just exhausted all the time but i guess that's the norm of me coming out of hospital on Friday.

My heavy chest has got a bit better though after a few nights sleep.

22 August 2009

Recuperating...

I've spent most of the time in my chair, feeling completely tired even though last night was the first night i'd actually slept the whole night through and i feel i am moving more better now. I have also had my first bath since I went in to hospital and left which was 5 days ago... boy was it bliss! :D I had washes in hospital but sorta with baby wipes and stuff like that with the help of nurses. Not the best cleaning routine...

My PEG is looking quite gross at mo... :( I'm hoping it will get better in the next few weeks or so. Not what you want after your birthday eh... but I am recuperating and drinking better now my swallowing is better. I'm still a little scared to try food yet and am settling for easy things like ice cream or jelly or custards/yogurts etc...

I am hungry but am still getting the feed over night. From now on, I can only get stronger again! Best reason to relax and get pampered with hehe! :)

21 August 2009

Hospital Part 2



I was given antibiotics and fluids through a drip and could only sip water through a straw, My tests were sent off and would be back in a couple of days. I was also sent for an ultrasound because my stomach swelled a bit due to all the fluids I was having. so my stomach looked hugeeee! I was wheeled to the ultrasound and it was found to be all fine apart from the low liver count, but that could go back to normal on it's own my doc said. I was fine sitting around drinking my tea through a straw, watching tv and reading magazines until all my results came back. Last night, my canula was removed after I no longer needed any fluids because I could drink as well. I was pretty comfortable sleeping better after having that taken out! All through the last few days I've had some injections in my stomach too to stop blood clots. I thought the injection sites looked like a smiley face! hehe


I was pleased to get all my tests back clear apart from the liver count one but I'm going to have a blood test for that next week. I'm glad to be back home and more comfy and can recover and sleep in my own bed! ahhhh! Thats yet another hospital trip over with!

Another ride in an Ambulance part 1...

After the boyfriend went back down to Bournemouth, I was still having trouble swallowing and coughing up all the time and the PEG still with infection and because I was having trouble moving about so mum thought it best to call the G.P, he said he would send me to A+E via an ambulance. I just wanted to feel better. The Ambulance came quicker than the last time! We only had time to stuff a few things in a bag for me in case the docs wanted me to stay longer. I spent 4 hrs in A+E waiting to be seen and when I finally got seen, the doc checked me out, took details etc and told me they wanted to put a canula in my vein to get some fluids in me and maybe some antibiotics if I needed some. Now when I heard that word canula, I got in a bit of a panic but to be honest I was just so tired because every move I made just exhausted me, even lifting up my neck! I had to feel sorry for my poor mum coz she hates needles and she had to hold me hand through it, bless her. They took some blood from me once it was in and sent them off for tests.

Meanwhile, after 4 hrs in A+E, they sent me up to a ward which happened to have my poorly grandma on. I was moved to a room on my own so that I couldn't catch anymore infections.
As I settled in my hospital for the night, I was upset and feeling a bit sorry for myself because I was so tired and I'd not eaten since my birthday really. I didn't want my mum to go home but visiting hrs were over now so she got me some magazines and there was a TV in the room (although only bbc and itv had subtitles...) When I settled down for the night, I also had my mobile although it ran out of charge during the night and I couldn't text anyone which was kinda sucky... (especially when I couldn't sleep because I could not get comfortable. I wasn't comfortable with the fact that I couldn't move when I'm laid down flat and I can't get up because of my weak neck. I was upset with the night nurses too because she didn't really help me in the way I needed to be helped and walked straight out the room when I needed her. :S I just didn't sleep all night and wished I had my mum.
I told the head nurse in the morning about it and she had a word with the nurses in question and things were better from then on...
(continued in part 2)

17 August 2009

Down and out (again...)

My Birthday went well and I went out with my family and boyfriend for a meal on the friday ( despite feeling a bit achey) but true to form it got steadily worse over the weekend... with my fustration starting to show I don't like to rely on other people concerning my condition. Having to rely on my mum to get me around the house is pretty crap for a 24 year old. It hasnt been this bad since 2003 when the condition first came to light.
I've just been up stairs to simply go to the loo and get changed into some new pj's on and by the time I got up the stairs, I was just exhausted! I havent been able to eat anything apart from hafl a packet of Skips since saturday because of my weak swallowing.. im getting a headache because of this and my damn neck wont support my head enough to stay up for 10 mins at a time so I have to take a break lying it down on the back of the sofa. At current, I'm drinking tea through a straw which is bliss.
The doctor and nurse came by earlier and they have given me yet more antibiotics ( i must have had about 4 lots of them now)
I was supposed to be going to Bournmouth with the bf today but he had to go home without me
:0 ( I'm sure thre will be other times though As Gwyn said to me earlier " its what going out with a bionic woman entails" I had to laugh hehe :0 )
I'm content at moment sitting in my chair with my lappy to talk to friends with.
Hopefully with this next batch of antibiotics and my PEG patched up, I'll start to finally get this damn infection sorted with for good!

12 August 2009

Swabbing...

The PEG nurse came last thursday to get a swab from my PEG to see if there any infection in there. I got the result back today so I will be on my THIRD set of antibiotics...(sigh) but at least it will be the right antibiotics for the infection I have! I don't know why they don't just do that in the first place and I can avoid having 3 lots of antibiotics!
On another note, its my birthday on Friday and and my boyfriend is coming up tomorrow for the weekend! its gonna be greatttttttt!
I'm also looking forward to going to a bbq at my friends on saturday! I haven't seen him for a while and he's just had a baby niece awwww. :) so will be good to see him too. Just hope the weather stays nice and sunny!

I also hope it's clear tonight, i may stay up for the shooting stars! thats if im not sleepy! hehe

5 August 2009

Exciting times...

My PEG is getting better so thats something, Im listening to the drone of the washing machine which is making me a bit crazy and want to shut the door and block it out, rather than take off the cochlear implant!
Recently, I have been talking to a father of a cochlear implant user on facebook about meet ups because I have always asked my implant centre if there were any meet ups so you could meet other cochlear implantees but all I ever got was either "pen pals from another town" or "workshop" which I didnt want. I wanted to meet up with people who had a cochlear implant and discuss our experiences etc... but now we are closer to getting other families or users of cochlear implants together for a meal where we can all chat! it will be the first time I have met a lot of cochlear implant people all at once! It will be a good experience if it happens! :D and meet the people I've talked to online.
Also my birthdays coming up next friday and i will be turning the big "24" when did time go??I dont knwo what i will be doing for it yet thought. Im sure ill find something!

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!

26 June 2009

Whisper shh...

After having my cochlear implant for 15 years, I have learnt to know when my sound has changed in the slighest ways, so when I woke up yesterday and found when I put it on, it sounded funny in a sort of fuzzy way. TV or Radio or sounds such as the kettle or every day things sounded fine but voices sounded sorta echoey... I had a mini freak out because I'm going to Bournemouth next week and I wanted my implant to be just right. I was like "why now??" I changed my batteries to see if it made a difference but it didnt, so I waiting til my mum came home and she tested things out with me such as her voice.
It was not clear as it should be, kinda echeoy, fuzzy voice like she was talking through a walkie talkie. I changed the coil but that was no different. I gave it to mum and she started flicking switches!!! I was like "what the hell are you doing??" because I'm kinda protective of my cochlear implant! But then she said "try that..."
and it sounded fine again... I was'nt sure what she did then she said "I put it on the M switch at the bottom of the 3G esprit processor" but I could have sworn I never touched them because I have never really used the W or T switch so by now it had been so long since I tested them out that I had forgotten what they meant! Mum checked the websites to see what they meant and apparently, I must have accidently flipped it to the Whisper switch! When it should be on M.
Suddently I felt so relieved! if not a bit silly for having a freak out! hehe
I would like to take a moment to mention Micheal Jackson who's music I grew up with, with the cochlaer implant from the age of 9. I remember I used to be scared of the Thriller video and hide behind my dad! My favourite song was Smooth Criminal but I guess all Micheal songs were legendary! He may have been troubled later on in life but his music was brilliant. RIP

24 June 2009

Boo...!

What a busy afternoon I had! Volunteering at the school was busy but fun! This week is Sports Week so theres lots of sports acitvities to keep the kids busy! The weather has been absolutly gorgeous thankfully and I've been outside watching on the grass, all the kids do their sports acitivies and cheering them on! Today was good fun too because there was a huggeeee portable climbling wall in the playground ( with safety helmets and harneses of course!) and circus things to play with such as juggling balls, spinning wheels and stilts! I had a go at the juggling, as rubbish as I was and helped the kids with the spinning wheels and the stilts!

Because it was soooo sunny, my eyes were almost closed due to the brightness! I'm a bit blind when the sun is that bright and I cant see where I am going...

Also today, a kid in the class I was helping in went "BOO!" in my cochlear implanted ear right in the microphone! Just above all the class room hustle and bustle, I heard him and turned and he went "scared ya" hehe :) bless him! If he had done it in the unimplanted ear, i'd never have heard him!

So this afternoon of fun. frolics and sun, I am so tired! The sun really make my eyes hurt at times when I'm out in open sunshine a long time which I think is because my eyes are so small and the fact they are droopy and not letting much in so when I'm out in bright sunshine, it really hits me and my eyes automatically try and close because it's so bright! Apart from the sore eyes, I had a good afternoon and I intend to have a goooood sleep in! Zzzz....

22 June 2009

Scare...

Do you know on a morning when you first switch on? If it sounds any slightly different do you panic?? I do! I have done this quite a few times when I scare myself! haha I switch on and the volume is switched down what with me fiddling with it putting it in it's dry box the previous night... then I scare mysefl because I think something is wrong with my processor or mapping! then I take a few mins and reaslise that it's just turned down! Phew! haha I guess I get a fright because of what happened to the other one.

On another note I had a good day at the school where I volunteer. It was nice just sitting on the grass hearing all the kids cheering on their teammates in a race!

21 June 2009

Happy Father's Day

I love my dad! He's put up a lot with me what with meidical things but he drives me to the hospitals and places I want to go. My parents are even taking me down to see Gwyn for a week. im a very lucky person to have two fabulous parents! :0)


This pic was taken at my uncles birthday. it was a while ago hence the short hair but I love the pic!

15 June 2009

PARTY!...or not...

On Saturday evening, I went to along to a friend's birthday party who was my friend's brother in law. When I got there, they were playing 5 a side football at Soccer City. I got myself a drink which was mostly water rather than cola... lol so i asked them for another which was better!
It started off good and having a chat with the people I knew there but once the disco started... all conversation went out the window! All i could hear from the room was boom boom boom music and everyone looked like they were miming as I could not hear their voices! I switched my cochlear implant off a couple of times which was very pleasing. There were also a few young kids running around screaming at the top of their voices! but thats kids for you! Kevin told me he thought the disco was too loud too! we both had such a headache by the time we got out of the room and went down stairs to watch some of the kids that were at the party play football. Lets just say I am glad i have my implant haha because I can switch off whenever I want! :) Kevin and other people were jealous of this! I have another birthday to go to this Saturday as well which is a meal so that will be good and a bit more peaceful! It's been a very busy two weeks with volunteering and birthdays! ahhhh sleep!

3 June 2009

Reconsidering...

Lately, I have been reconsidering the eyelid lift procedure because 
  • It will give me a better quality of life
  • Maybe my eyesight will be better (less double vision)
  • No more droopy eyelids
  • I won't have people asking why I look tired
  • My eyes have been sore because I'm straining them what with having to keep them open and my eyelid muscles not being strong enough to keep them open. (hence the droopiness)
I have emailed the docs about it after more information about the procedure since last time I was there, I pretty much gave the doc a blunt "no" Since then the top of my eyes are feeling strange and heavy, I would really rather not feel like this any more. Today at volunteering I could hardly focus on the board and the teacher so i barely knew what the lesson was about!  Although i did email the doc, I got an automatic email saying he was on holiday til 15th june. Typical! 

On a more happier note, I have been enjoying the sunshine in the garden soaking up the rays and the park with my boyfriend which was a lovely weekend.  It's been a while since we had some decent warm weather! I tend to make the most of it! I'm also doing my cross stitch which I'm glued to at the moment! It will be good to get it finished!

27 May 2009

How my 15 year CI review went...

We set off early because my parents wanted to go to a shop but the SAT NAV was causing havoc and we couldn't find it so we set off to the Yorkshire cochlear implant centre. I got to see Jane Martin and Lyn Jamieson who I have pretty much known the whole 15 years of having the cochlear implants and had a good catch up with them for a few minutes! hehe
I then went into the brand new audio room with Salim my audiologist to begin my review. He checked my ears and then the cochlear implant electrodes inside my head which were both fine.
It came to discuss me getting the Freedom CI and he told me not yet because they dont have the funding at the moment to give the Freedom to the people who have the 3G and are just giving it to the newly implanted patients at the moment. It costs £3, 000 to upgrade from the 3G to the Freedom and the YCIS dont have that funding yet to do it. Once funding is cleared and sorted, however long that may take! they will give me the Freedom to everyone once but when I DO have the freedom, they cannot give me my 3G esprit CI back if I don't like the Freedom because in the future, they wont be making the 3G anymore hence they won't be making parts etc...
Salim told me that the with the Freedom, the microphone is more senstive so it may pick up more background noise and that its more chunky at the bottom which I was a bit unsure about but when it comes to it, I'll have to keep the freedom and get used to it basically! But for now it's sticking with the 3G til the funding is cleared!
I now do not have to go back to the YCIS for 5 years now for my 20 year review unless I have any problems with my cochlear implant and they call me in for something.
Today was also the last time I would see Salim because he has been headhunted by a cochlear implant company so next time I will have a new audiologist which will be very strange because yet again Salim has been there from the beginning too.
As a good result of my 15 yr review, I decided to put some purple in my hair... but it did not work!! booo! I'll have to try another hair dye kit! hehe

17 May 2009

My 15 year cochlear implant review...

On the 27th of May, I have my 15 year review at the new cochlear implant centre! I don't know whether they are going to offer me the new Freedom behind the ear CI. Although if they do, I am able to keep my old mapping because I just hate the slightest change in my mapping. Im sure i'll put up a mini fight if they want to put a new mapping in and stick with the 3G but maybe since I've had the 3g esprit for a good couple of years now and i'm quite used to it. Im not sure if i can make the change to a different BTE but if they offer me it, I'm going to try it out at least see if it makes a difference. I never do like the change of a mapping when its just been changed! I think it sounds all funny but I always give it some time to get used to it and maybe put the old mapping on another setting on the CI if possible if I can't get used to it!
The only thing they said to me last time I was at the centre was that because I have an old version insdie my head that some of the features on the Freedom may not work with it. Thats the least of my worries anyway! I just want it to sound ok! hehe
but 15 years, its gone by so fast, its come to the point I hardly notice it on my ear anymore! I sometimes have to double check I've still not got it on when I'm in the bath! hehe
The review should be intresting! :D I'll let ya know how it goes!

11 May 2009

Well...

I need'nt have got upset about my weight since the bloody Wii fit scales are WRONG!!! When I stepped on the Wii fit weighing scales, it noted that I was edging on 6 stone at 7st 1 but I decided to try the REAL weighing scales in the kitchen and it turns out im 7st 7. which isn't that big a drop from 8stone 3 that I was after all the PEG feeds and dropping to 3 nights a week. I got upset because of the bigger drop and thought I had lost all that weight which some people would LOVE to do. But me on the other hand am different, in this day and age with everyone trying to lose weight, I'm trying to put it ON!
I'll be weighing myself on the REAL scales from now on, save me some upset!
hehe

10 May 2009

I wish...

  • I wish my weight would stay stable at 8 stone 3 as I've dropped down to 7 st...
  • I wish the last few years hosptial wise never happened...
  • I wish I didn't have to make the decision whether I should have this eyelid lift procedure...
  • I wish that in the future there will be a moment where I'll actually think I am going to get my PEG removed...
  • I wish that I could eat a whole variety of foods and wasn't fussy as hell, life and teatime would be so much easier...
  • I wish my brother would talk to me more...
  • I wish I was a kid again, because I coped so much better with hosptial stuff
These are the things that have been going through my mind the last few days, of course it may be hormone charged of that time of month but they are very real things that I wish were better and those things get to me and make me upset. Any other time, I would be totally positive and these rare times that I get down, those 7 things seem heavily on my mind.
Im grateful for the friends such as the C.I friends that I have met in the last year or so thanks to this blog, etc Vivie and Kara, they understand me and hosptial stuff and don't half make me laugh when I'm down! :) and meeting my lovley boyfriend who makes me feel so very happy!
Although lately, I've noticed that nothing of my upsets have absolutly nothing to do with my cochlear implant because thats still fantastic and it's so much a part of me, that I dont't notice it anymore what with all the more serious hospital stuff. It may have been the very first thing I had operated on me but I love it! I don't know what I would be like if I could'nt hear music or voices. It makes such a transformation to people's lives.
Anyway, I'm feeling much happier today and I'm goinna do me some cross stitching! :) After all, I'm only human to get upset now and again. x

7 May 2009

My Latchhook! :)

it took me 2 weeks to do this one. Not too bad!
Don't know what to do with it now it's finsihed though...


5 May 2009

Spontaneous things...

Since I have had my cochlear implant, it wasn't so bad to do spontaneous things. I could still sleep at friend's houses and things like that. I could just put my cochlear implant on a piece of paper on a table safe from things while I sleep and I always had spare batteries in my bag just in case.
Nowdays, it's a bit harder what with the PEG, athough it's not that much of a change but I have to organise if I'm staying out. I need to bring my syringe with me to flush my PEG with water at night like I do every night and morning!
Ah, I'm not too fussed about it anyway, I've been more of a organised person than an spontaneous person! :)

4 May 2009

Latchhooking away...

I haven't wrote on the blog for a bit so I apoligize for that. I have been latchhooking away at the new kit I got! ive tried to do 10 lines a day. Although, I haven't really got to doing 10 lines every day what with distractions etc... but im almost finished with 20 lines to go! Most of you probably don't have a clue what I'm waffling on about but I'll show you when it's done! :)
I have been feeling and looking sleepy because of my eyes. I think it's the lack of sleep due to my bad arm... I don't like to sleep on my cochlear ear although I have in the past but not for long. I prefer my right side to sleep on. I forever feel like feel llke the fairytale " the princess and the pea" because i still feel things such as the mattress springs even though I've got a duvet or 2 on top of it! It used to be much worse when I was skinnier. Even now I notice a difference of my right side being smaller than my left side as I've always slept on it.
I am currently enjoying hearing the rain come down at the moment as I can hear it pattering against the wall and the window. Quite soothing! :) I shall post a video of my latchhook soon!

27 April 2009

Good News...

I went on my usual 6 month trip to Bradford to see the cochlear implant doc. After all the sun we have been having, the day I was going out, it decided to rain! Just my luck!
The waiting time was as usual, long and slow! I finally got in to my appointment and he checked my bad right ear and declared it healthy! At last! Although, it can get sore at times because I mostly sleep on that ear. He then checked my cochlear implanted ear and he said all was fine!
Because my right ear is declared healthy, I no longer have to see my cochlear implant doc unless I need to. I was sooooo pleased because I have been going for so long to him with him checking my bad ear! 9 years in fact! cleaning it out and checking it out. Now I no longer have to do any of that! My ear is healthy! It will take some time to sink in but I hope i grasp it!
:0) All i need to do now is go to the cochlear implant centre if i am required to! woohoo! :0)
I'm very tired now after that day but its one less thing to worry about!