Wednesday 31 December 2008

2009 already...

Wow hasn't the year flown by!!!
I'm round my mum's and her fiancee's for a few days as i do every few weeks it's nice get to spend sometime with my mummy whom i love dearly.

I had a awful night last night at home tho At about half 2 i started vomitting quite badly and had stomach pains. I did think today i had the sickness bug as i felt so rough all day but my dad told me he felt awful after a pizza we had had the other night so think that's what the problem was i'm now off of dominos pizzas ergh!

I'm hoping 2009 will bring me some lovely new lungs that's when i get on the list. which i'm sure i will just need some help with my weight gain so am probably going to say yes to the ng tube.

2008 hasn't been that great a year second port coming out of my skin. having awful pains that make me faint falling out with friends having to go for transplant assesment and also losing a great friend toria.

But 2008 has also had some good points 2 i kicked my fear of needles. I got a picc line which was good apart from poking a nerve lol and i got the go ahead to try megace and gained the most weight i had in years. so not to bad i'd say.

let's hope 2009 brings everyone great times and happy memories and everyone who needs some new sparkly lungs gets theres :) xxx

Monday 29 December 2008

christmas is over!

Hello couldn't be bothered to update my blog for the past few days as not been to well. I think xmas wore me out lol not that i did much. Anyway xmas day i woke up about 8 but couldn't get back to sleep my dad woke up to let the dog out he said he would have another hour in bed then we can open presents lol but i still couldn't sleep don't think he could either cos he was back dow again about half 8 hahaha! He woke my brother up and we opened our presents.
My dad got me
every episode of friends on dvd, a massive makeup case on wheels full of makeup, and a dove bath set.
my brother got me
some nic bottles of bubble bath they were like toffee scented and apple. and he got me a my sims game on the wii which i'm addicted to lol thanks bro! lol
we also gave Dave the dog his presents he got a squeaky hedgehog and a armadilo lol he loved them.

at about 11ish my mum came round with presents she got me some socks with my name on, a dressing gown, some britney spears perfume, a me to you rug it's so cute it's ike one of the big teddys but a rug lol, and also got a me to you diary, some chill trousers and a zip hoodie, and a pink blow up pillow with a eye mask and socks.

my mum went home after an hour as she had to do dinner. it was a nice chilled day we had dinner about half 2 it was lovely my dads such a good cook. watched the queens speech it was boring lol. then i had a little nap and then played my game on the wii.

Boxing day was pretty quiet. I went to my mum's her fiancee's daughter was there she's 5. she got loads of board games and Ian was playing them all with her. i got some presents i got a lovely picture frame, a new handbag and jimmy carrs new dvd which is hilarious.
we had some bits for dinner and then eva went home and me ad my mum chilled.

I am pretty shattered from xmas now as was naughty and got out of my routine of nebs and physio. so my chest has't been doing that great. I am also strugglig with this burping problem it's always after i have eaten i can burp for ages it's horrible it's keeping me up at night aswell.

Wednesday 24 December 2008

if you don't have CF then you dn't understand what it's like so shut up!

Well last night was very eventful me and my best mate fell out big time and oh my god the things she said were unreal! Basically i am sad and pathetic cos i have no life not cos of my CF but cos i have no social skills ha! then she said i wouldn't know a days work if it hit me in the face. she also said she'd break my neck and my back so i know how she feels everyday (yes she did break them a few years back but can walk and is pretty much normal now) anyway i just thought ha how sad of her. Then she said me using a wheelchair is pure lazyness hahaha! stupid bitch! Now i'll admit i said some really horrible things to her like telling her to go do a better job of crashing her car yes mean of me i know but when someone gets personal then i'll not hold back i can get just as low. but eveuntually she carried on texting but i just sat there and deleted them before reading them. I'm feeling really well right now and not going to let a stupid jealous person like her bring me down. And yes she is jealous of me for some odd reason i think she wishes she had CF cos my parents care and help me so much hers don't. Oh and my parents apparently feel pity towards me cos i'm so weak this actually made me and my brother laugh as if i was weak i am pretty sure i would of given up or died along time ago especially when i got pnuemonia that nearly killed me but i fought it took a dam long time but i made it and am still fighting today so she can go take a running jump! Rumour has it she crashed her car on purpose anyway. not suprising really she is a bad driver and doesn't pay attention as she is always texting on her phone.

Anyway i am all set for xmas can't wait should be a nice day. we have cheated on the trifles i normally make one but we bought them from asda last night hehe.
I went shopping with my dad and deciced i'm not going to use my wheelchair as i need to see if this pain will come on. so we were walking round asda and we made it to the pet food and i had to sit down as the pain was there it was very very faint tho but still there i got hot but not as hot as i normally do and didn't feel like passing out just felt all tingly. anyway after 5 mins i got up and started walking again i had to sit down again for about 5 mins and then got up and went to the till. I was fine the rest of the time tho so didn't feel to down about the pain as it wasn't as bad so obviously my line was irrating something. gonna go back to the docs in the new year and see what he suggests as i think it's nerve damage. anyway hope everyone has a lovely xmas xx

Sunday 21 December 2008

Happy 1st birthday to edward

It's toria's baby boys 1st birthday today and althought she can't be there to celebrate i am very sure she is there in spirit. Hope he has a fab day and that luke does to. I still miss toria lot's and lot's but am sorting my self out cos i know she' kick my bum if i moped around about her passing away.

So a big happy birthday to you edward and big hugs and kisses xxxx

Saturday 20 December 2008

Back to my daddies

I'm back at my dad's now. Had another great time at my mum's and her finacee's again it's always quite a good laugh lol. Am seeing my mum again xmas day as she is gonna pop over with presents for me and my bro and i have some for her to open. then boxing day i am at hers to open presents and then she can have the rest of hers lol. i'm very excited about xmas this year as i feel pretty good although still 5 days to go so fingers crossed it lasts. I haven't had that awful pain either and i've been running around just to bring it on but it's not happening so that's great and it's really cheered me up lot's as i was getting so down and fed up with it. I c an handle not being able to breath properly i'm used to it and have a breathing technic but that pain i really couldn't take that aswell but it's gone and i hope it stays gone. :)

Friday 19 December 2008

I feel so good

I feel really good today my chest is not tight i'm not wheezy i can actually get up and walk around yes i get breathless but not as bad as it has been and haven't had that awful pain since my picc line was removed so i am hoping that was the cause to alot of things and was just possibly sitting on a nerve or somthing. The thing with my picc line is it never sat in the top of the aorta like it was supposed to it wouldn't go any further then my shoulder as i have a thin vein due to where i had a car accident and the port i had at the time had broke in my neck so now that vein is buggered so won't be having any lines put up there again.

The next time i need one i am going to get it put in the left side and hopefully it can go all the way where it should sit. Last night i had a bath as normal and sat in the bath and waitied for the pain to come on but it never did. I kept forgetting that i could get my arm wet again and kept leaning it on the side of the bath i then realised what i was doing and stuck it right in the water lol it felt really weird as it's not got wet since feb lol. I did my hypertonic saline last night and was shocked cos i hadn't coughed alot up i thought wow that makes a change even with physio i hardly coughed anything up i was chuffed lol. My mum was a bit shocked yesterday as i ran down the stairs i was doing it to see if the pain would come on but it didn't. I have been moving around quickly just to see if it has gone and so far i have had nothing so really really hoping it's gone and that i can start walking around again and doing housework abit more cos i hate sitting around and not being able to do anything it sucks. I'll still use my wheelchair when i have infections and go somewhere that involves lot's of walking. But i'm hoping i stay well for a while so i can get some weight on. and enjoy christmas this year. xx

Thursday 18 December 2008

Clinic today

Had clinic today my dad took me. Was pretty prepared for them saying i had lost some weight and decided not to wear a bra cos i thought they'd wanna do a chest x-ray. Got there about 9.20 which was good considering traffic was pretty rubbish and that my appointment wasn't til 9.45 but if i get there early they see me quicker.
I got weighed and i was 45.5kgs i have lost a kg which i was quite upset about but the nurse said not to be to upset about it. Then i did a blow to see what my lung function was doing and OH MY GOD it was the same as it was at the end of my last iv's which was nearly 4 weeks ago. We discussed ng tube feeding as the dietician thinks my weight is gonna stay between 45-46 and not go much higher which isn't good enough to get on the transplant list so going to think about it over xmas. But yay no iv's over xmas just gotta keep up with my routine in the evening. of physio and nebbing best after a bath as it loosens everything up even more lol.

The big change is that my picc line has gone and i am so sad about it but it's to see if it's the cause of the chest pain fingers corssed it is cos then one less thing to think about. Hopefully get another line put in in the new year anyway am off to drink my tea and watch spin star xx

Wednesday 17 December 2008

Feeling ok

Today chest wise i have been feeling ok not as breathless as normal so am thinking these nebbed antibiotics are fighting my infection as i really don't want iv's over christmas. I have clinic tomoz and am hoping they'll find out what this pain is as had it a few times again today but other then that chest ain't to bad. I'm not coughing up as much gunk as i was so that's good.

I watched 3 films last night i watched the day the earth stood still which i had been looking forward to seeing it wasn't as good as i thought it would be so was rather disapointed. I then watched Donkey punch which i was quite shocked about as it was very rude and violent eeek! but still good lol. I then decided i was still not sleepy so watched the changeling now from seeing adverts of it i didn't think i'd enjoy it but oh my god it was fab and i have so much respect for christine collins and the fact she kept on fighting. The murder in it scared me though as he just had no remorse for what he had done. I presume walter was one of the boys murdered as he was never ever found although his mother never gave up the search bless her! The film was so sad and kinda frustrating cos the police guy was such a arsehole!

anyway will write about clinic tomoz am off for my chicken korma now tata xx

Monday 15 December 2008

can't make it's mind up!

LOL as the title says my chest just won't make its mind up! 1 day i feel awful like i have a infection then another day i feel great and full of energy! bloody thing is annoying me now! I got that pain again today but i managaed to get rid of it by taking really slow deep breaths and it went before it came on fully so hopefully i can now control it! as i won't b defeated muhahahahahaha!

I was pretty angry today and had a good moan to my ex about it. (He's been a great friend to me lately) we can talk in depth without it getting weird and upsetting now which is nice i can see me and him having a great close friendship as i have now come round to the idea of not being with him in a relationship right now as i'm just to ill to manage. And i know he finds it hard with me being ill but who knows what the future will bring when i get my new lungs lol.

My dad isn't to well at the moment he has a virus or something which is worried i'm going to get but i am staying at my mum and ian's on wednesday so it'll be fine. My mum has a cold tho lol but i think i'm going to be on iv's on thrusday as my chest just can't make it;s mind up! so better to be safe then sorry. I thought my picc line was casuing that pain but now i'm not sure lol duno what it is. will have a word with the doctor on thursday at clinic.

anyway it's a bit chilly brrrr! I'm watching spinstar on itv 1 there's a girl called carrie and god she never answers any questions right! why go on there if your that thick lol.

had a dream that i weighed 50.5kgs last night hmmmm don't think so lol i reckon i'm about 45-47kgs as been struggling with my appetite at the mo. and can't stop burping grrrr! i feel bloated all the time not nice stupid body lol.

anyway my beauties i am off to watch telly TA TA xx

Friday 12 December 2008

Getting really fed up!!!

I'm still getting this stupid pain and still no one knows what it is! I am trying to flush my line twice a day to see if that solves the problem as i can't take much more it's really peeing me off!

I tried making pancakes this morning as i really wanted some but the pain came on so thought stuff it and had a milkshake instead which is ok but not good enough.
I got dressed today and it took me half an hour just to put a top on cos of this pain. i want to know what it is grrr!

Sunday 7 December 2008

oh no not again!

Hello everyone. Well firstly i'll say i decided i fancied a change of colour for my blog so my mum helped me pick this one out hope you all like. I spent 4 days at my mum's this week it was nice and a good laugh as always. Wasn't to well on thursday tho as i got that pain again and it decided to hang around most of the night. I haven't been sleeping very well lately 4 days in a row i have been without sleep. I am tired but just can't seem to drop off. I think it's cos everytime i have been very tight chested and wheezy so it's been hard to breath. I wondered what was casuing this and am now thinking it's the hypertonic saline as i couldn't have it 1 night as i felt sick and everytime i coughed i was trying not to puke! But That night i wasn't wheezy so slept okish.
had my saline last night and yet again struggled to sleep due to wheezyness. My inhaler doesn't settle this either.

Went to the pet shop yesterday with my mum and Ian to get some gerbil stuff as they have 2 gerbils. Nigel and mr jingles lol and i wanted to get my dog dave some christmas presents as he loves to unwrap them on chritsmas day hehe! we then went to a garden centre as my mum wanted some tinsel. Ian was pushing me in my wheelchair i tel ya he is so annoying lol he just parks me somewhere an leaves me it's so funny he is only messing about tho but it's a good giggle lol. we then went home and cleaned the gerbils out well i just sat and played with them as my mum cleaned out there tank. They love it when it's all clean they go nuts and dig and run about lol it's funny.

I went docs on friday and mentioned this pain i asked if it could be acid reflux. so we are seeing if it settles with me taking double anti acids so far tho i have still been getting the pain. I have also not been able to stop burping it is so bad i can burp for ages eeek!
if it doesn't settle in 2 weeks i gotta go back and we are going to try something else. He mentioned someting about nerves in my spine which is a bit freaky hopefully not that.

Came back to my dad's last night and chilled out but stupid me had my saline and felt rubbish for it grrr! not doing it tonight! i watched the x-factor i was hoping JLS or eoghan went but diane did instead wasn't to bothered tho as i want alexandra to win lol shes fab!
i watched a film called invasion which was pretty good i really enjoyed it.

me and my dad went shopping for some crimbo decorations we went homebase and they had sold out of tinsel? how do you sell out of tinsel. so then e went b&q they had loads there :)
i decorated the tree and my dad hung all the tinsel and other bits around the room. it looks very festive :)
I have done all my xmas shopping now just waiting for 2 parcels to arrive one is just a top for me but the other is a present for my dad. Am off to machester too up tomoz as my mum's bf ian has to go up there to do something wit his car so i said i'd go as it gets me out and about plus my auntie lives up that way so we are gonna pop in and see her. and her dog alfie who looks so cute.

I am worried about my chest again as am struggling with stairs and generally getting dressed. I am back at clinic on the 18th so will see how i go if i get worse tho i will go up before then. really don' want iv's over christmas grrr! stupid lungs!
not much else to write about so will go now and have a bath and relax lol shall wirte tomoz bye bye xx

Wednesday 3 December 2008

had a hard day...

Well yesterday i had a pretty bad day. I got my chest pains 4 times and one time it happened whilst i was cooking some pasta i had to sit on the floor and i had forgotten i was cooking then heard a boiling sound and realised the pasta was still on so tunred it off whilst trying not to pass out argh!!! I got so fed up i rang the hospital and they said the same thing take paracetamol argh! the pain lasts 10 mins and it's ok i can handle that it's the burning up and nearly passing out that i can't take it's getting annoying now. they told me to come up tomoz but i think it would be pointless they'd just turn round and say it's mucus plugging so i am going to my gp friday about it. So spent most of the day in tears about it. But i'm feeling ok today just gotta take my time when doing things and not rush .

I am at my mums til saturday now which is good gonna chill. I am finishing some shopping tomoz one more order and then i'm done hurray lol just gotta wrap it all lol putting the decos up on sunday at my dad's. anyway i am off to have some dinner adios amigos!!!