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21 June 2016

cochlear check up 2016

I have been going well mito wise and every dr is happy for me for once haha l have a cochlear implant check up coming up since i haven't been for 5 yrs! will be good to have a check up and see if everything working as it should. i have been enjoying holidays with the family even if i do have to bring the wheel chair and meds with us!

11 April 2016

newcastle appointment 2016

i forgot to update this blog with what happened at my appointment this year! ive been relaxing and doing my cross sttiching!

firstly i met up with susan another mito fighter from our chats online and ou mito support group on facebook as she was there at the same time.
i had my weight and bloods taken as usual. We saw doctor Gorman this year as professor turnbull wasnt available. we were asked if we preferred to see professor turnbull  but we had already booked our hotel for the day. we were hoping to get some genetics results from 2 years previously but they STILL didnt have them! i wondered how much longer we had to wait for them but they assured we WILL get them this year! i did the usual mental tests and talked about my diet and everything is good so far and they arre happy and i am happy! well almost happy it would have been good to have those blood tests results as we have been waititng for so long for them but another few weeks or months wont make any difference!

24 December 2015

merry christmas 2015

hello one and all 
its that time of year again and i started december by picking up a bug when i went to my nanas and i was sick of the way home! it took a lot out of me and ive been recovering in bed for the last week but now on xmas eve im feeling stronger im not complaining but it was hard and frustrating getting better as it gets worse before it gets better!  im looking forward to spending with family. i hope you all have a good christmas and good luck for 2016!

17 December 2015

xmas 2015

well i was hoping to make xmas 2015 healthy (as possible could) but i was let down. i picked up a sickness bug the day before the annual meet up at my nanas and i was in pain the whole time and sick on the journey home! and that set off a mito attack. 
ive spent the last few days so frustrated at my body that it sent me to tears but all i can do is rest and walk about a bit to get stronger. 
its already been a week ive been like this but im trying to keep upbeat as theres nothing really anything i can do about it but thats how rare mito is i am so happy that i have at least people who are going through the same as me so they can relate and we can moan about it!
 Anyway i hope you all have a good christmas!

24 October 2015

peg trouble...

\last thursday i had to go to A n E again because my mum couldnt get the saline in  or out of my balloon in my peg so came to the conclusion that my balloon had burst again and needed to be changed. for some time ive been putting on weight naturally without the feeds and we think my meds are the reason that i am keeping it on and steady. for some time because of the weight the nurse has said i may need the next size of PEG as the one i had was getting tight which is why we think its  bursting often. so A n E put my normal PEG in and gave me some antibiotics as i had a bit of infection which was nasty taking bleagh! the doctor who put it back in said it was getting too tight and the PEG nurse was coming the following thursday so he gave me the antibiotics and and the following thursday the PEG nurse put a bigger size of PEG in and a bit loose which is ok just need to be careful when i put my meds through the PEG tube. all in all a good week!

23 September 2015

aware

 this week is mitochondiral disease awareness week! i have been doing my best to share and post facebook xtatuses to get awareness of it!

11 September 2015

eek ear infection??

i got scared last week because i thought my recurring ear infection in my right ear had come back after being dry for so long i spoke to my mum about it and she called the GP who prescribed some ear drops and oral antibiotics even though i dont have a cochlear implant in that ear in that ear anymore its still one thing to worry about.
my mum then cleaned my ear out the other day and found a bit of cotton bud left in the ear from when i cleaned it and thats why it got so waxy and infected i was like phew its not that bad after all its settled down now its out haha im still having ear drops and the antibiotics til its all finished but all in all an eventful week!!

4 September 2015

im doing pretty good these days although i have a sore PEG area but nothing sudacream will fix! im getting a little worried about my weight though although im a healthy 10st 7 its all going on my belly so think more gym days are needed! Joy my mental helper is pleased with how everything is going which im pleased about as i always worry about that but my meds and everything is going great! 

9 August 2015

heatwave...

my part of uk is going through a heatwave at the mo which is uncommon to say the least i have taken to sleeping on top of my covers with a sheet because its too warm! i dont know if its the heat or its my mito playing havoc with my body?? either way i shall be glad when the weather cools down!

1 July 2015

eek button burst!...

on sunday as usually do have my meds one by mouth and one through PEG line but today in horror my button came out with the line and i was in a bit of a panic coz it had never happened before! but mum sat me down and put the emergency catheter in and tried to get on the phone to the PEG nurse. of course it was a sunday so mum couldnt reach her so we were told to go to A+E  this was 9pm at night Also being a sunday my dad had a few drinks of wine so couldnt drive me so my brother had to drive me and mum to A+E where we got seen straight away. 
There was a nice male nurse on duty to pop the PEG back in and reassure mum that putting the catheter in straight away was the right thing to do so 15 mins later we left A+E and headed for home a bit sore but glad it could be sorted out quickly! Mum phone the nurse the following monday to get a new date for re- pegging. 
Thank god for cool headed mums eh??