cold...

urgh dads given me his cold! crappy immune system! at least i aint gonna get flu  coz ive had the flu jab! although im on my feed pump right now pumping me full of vitanmins and minerals and calories to fight off infection i also have to do 500 mls 3 times a week instead of doing over night so our dietican has cchanged our order for the 1000ml bags and changing them to 500mls and do it during the day while im watching tv or on the internet and its easy to disconect if i need loo so that will keep my immune stystem going!!  also had bad news about a family friend today so ive spent most of the day arguing with brother and mum about stuff concerning me as well so we are all a bit on edge!

mito info day in newcastle,,,

we went to the ct scanner first appointment to scan my brain then we got results later when we saw prof turnbull. we then went to have the EEG which checked my brain activity witch was normal, i found it very surreal having all these wires stuck to my head! its not something i had done before. We then went to see prof turnbull we discussed how i was getting on with my medication, diet and exercise. i told him i excicise once every weds with my carer. he was happy with my overall being. the reason i had the ct scan was cause i was having short term memory loss he told me my brain had shrunk little but he said this was normal in mito patients. hr also told me i had no tumours or growths so that was good newsi did a memory test with a nurse just to test my short term memory loss. all was good though. over all prof turnbull was happy to see me next year.  once we were home we went to see the specticals place to have an eye test and get some new glasses ooz of the double vision and the fact i cant read the tv far away. we pick them up in a weeks time!   

peg huggies...

I got this awesome website for PEGS they are like huggies avaiable for children and adults!here is the linhttp://www.mybuttonbuddies.com/ im liking the sunflower one!! n they are cheap to ship out to uk or usa!

new newspaper aricle

Mum bought the local paper today and what was in there but a full page spread of me! i was only expecting a little corner feature on one page not a 2 page spread but the articel is infomative and shows mito awareness and cochlear implant awareness two in one go! ha but the pic is good too wasnt expecting mum to be in either coz she was worried about her mkake up or lack of it but i think she looks great lol here is the link of the article holy crap was just expecting a one corner page feature nota 2 page spread lol

http://www.examiner.co.uk/leisure-and-entertainment/health-and-family-news/2012/04/25/family-and-health-lockwood-woman-s-fight-against-rare-cell-disease-86081-30831939/2/

il have to send a few copies to my nana and family in middlesbrough coz they dont get the axaminer  or neither most of them arent on facebook or twitter either

but i like how the reporter has resrached mitochondiral disease and has done her homeowrk!

heres to mito and cochlear implant awareness!! :)

Heart monitor...

On friday i had an appointment at the heart clinic at the lcoal hsoptial so i got there bright and early it was busier than the last time we went there!  Me AND my mum went into a room when nurse   called us she took my weight and height. she said i was 5 ft 5 so i thought id lost a foot coz i always thought i was 5 ft 6!!

She started me off on the breating machine where u have to take a big breath in and then a big blow out into a tube  n it measures how strong the breath is.

I did this a few times so that she got the best reading

She wanted me to do this monitoring thing when im asleep to see how my heart is when im asleep so i had to have this monitor on my wrist n finger for 10 hrs while i sleep and send the monitor back to the hospital in the morning  to analyse the readings

Thank you for your support

i have been made aware that i have 75 followers on my medical blog and i would like to thank each one of you for reading my posts no matter how boring or trivial they may be! Thank you for your support and your readin my posts :) and i hope to carry on til we get more awareness out for mitochondria disease and a cure in the future!

heres to 10 more years of blogging
Thanks all x

research and genetic

Yesterday i recieved a letter from Prof turnbull about the reveiw of my muscle biopsy that igave in 2004 i was surprised they have any left!! ha
butt.. the long story short is that i now have a name for my conditon which is the name of the condtion i have been using for the last few years because thats what prof turnbull said i had in the first place! MIITOCHONDRIAL MUTLIPLE DNA DELTIONS  he went on to say that they continue to use my muscle biopsy and bloods to research WHY there are so many mutations in my DNA because i have several mutations in my mitorchondria cell which causees the condtion and made me deaf blah blah....
 but the sotry is we can tell the docs thats what i have GPs  or any new doctor i meet etc

They said they would carry on with the genetic testing of my mitochondira cell to find out to see if they can find a cure but this is painful work and may take years!  but i was born with this condtition and its not a death sentence for me unless i catch an chest infection again!!! 

i understand that there are different types of mito condtions which affect us all differently and we all get energyless and lethargic  thats why i set up the mito support group with susan warnock she helps me admin the group  and the group is getting more memebers every week! so we are pleased that we are helping people! we are going to give some leaflets out at the patient information day about the support group and we will both say a few words about it in our workshops because im going to the social netowrking workshop and susan is going to the fatgue wrokship so we can both mingle with people and tell them about the group! im pretty nervous about talking to everyone though!! because these wrokshops are VIDEOED for the newcastle mito website for people who missed the day.

 i am also in the midst of setting up a uk mito website because when i was diagnosed in 2003 at 18 i didnt have anywhere online to go and find information on my condtion. because i had been told i had this rare contiton i was born with and i didnt really have any support except for the hosptial and the hospitals website sooo with the help of my brothsers media skills and friends helping me with logos im setting up a website where people who are newly diagnosed to go to for supprot!

i hope to get this dont in the next couple of weeks so we can talk about it at the patint info day on 28th april!

So watch this space... hehe x

Easter...

Im having a good easter with my family today i watched PS I LOVE YOU with my  parents and i enedered up blubbering again ive seen it before but its so nice that it makes my have happy tears the same way i do with fly away home and the notebook and now i can add ps i love you to my favourite choice fims! Heres are few soundtracks from pa i love you which i love listening too! all these songs are capable of making me cry from the min the intro comes on! They are just such nice songs that tell a story!

Stress....

ohhh, where do i start??   why cant i keep my gob shut?? and avoid arguments? I only get into these situations because i am passionate about something!  i really cant be arsed getting into an argument that gets us nowhere!

If someone doesnt respect me and how i  work then they can get stuffed and i can concentrate on my 3 groups and my blog and mito awareness!  Why am I wasting time arguing when it gets me nowhere in life! 

If someone has a problem with me i would rather they give me a chance to expalin myself  and then they can have thier say! instead of using friends to fight their corner! That makes them cowards because they cant be bothered to see something through if they started this arguement with me then see it through and talk to me about it and see if we can work it out not  spread lies about me and ruin my good reputation!

I try to avoid arguments because they stress me out big time! and my  rparents often tell me that i shouldnt talk back and that gives them bait but i usually do run my mouth sometimes when i should keep my big gob shut! Well il be doing that in future to avoid arugments and i will concentrate on myself and my health and not get stresed out! because stress makes my mito worse and i tense up and my muscles get stiff and  i ususally spent the who next day in bed!!

SeeHear deaf video

Here is my See Hear deaf programme which i appeared on when i was 15 and i won a competitin but i never recieved their prize so they offered for me to go on the programme to collect my prize here is that video!

eye probs

Because of my eyes and cyst problems my eye doc has encouraged me to  use a wheatbag on my eyes to  soothe them and stop cysts from forming.  We heat the wheatbag up and place it on my eyes til it  cools.  i also get antibiotic drops put in to keep the cysts away and also some eye drops to keep my eyes lubicated as my eye doc has told me that my eyes seem to dry out and sleep gets stuck in the tear ducts causing more problems for me!
my mum puts the drops in 6 times a day

excercising my nails

Today i woke up rather early at 8am felling rather bloaty so took off my feed ans flushed it with water.  i went downstairs to watch telly with mum before getting ready for the exercise class.
Victoria came to pick me up at 1pm  to take me to exercise class where i did various exercises sitting down and standing up and we used like a stretchy kinda strip which you stretch to  make your muscles stronger. 
It doesnt half tire me out though doing the simple exercises. it may be easy for a normal person but for a person with mitochondria disease even putting clothes on can be an effort!!
i had a go on the mini trampoline too following the instructor. Victoria joined  in with me and kept me going!

After getting changed me and victoia went to costa cafe which as just a short walk away and i had a cup of tea and a gingerbread man  then went home to do our nails

SeeHear video...

Ive been trying to get  my video of me on SeeHear the deaf programme thatn BBC 2 on wednesday  at 1pm
I went on the programme because i wont a poster comptiiton in the NDCS  magazine and i didnt recieve my prize so they let me go on SeeHear to accept the prize which was a BSL  cd for children i was only 15 at the time!
Ive been trying to get the video to tranferit to dvd and i would tranfer the dvd to the laptop   but the blank dvds i have dont work so i need to buy some!
then i will tranfer it and post it on here and mabe facebook my brother said he would help when he comes back from uni on thursday x