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!!!

Saturday, 29 November 2008

Been thinking

I read Toria's eulogy yesterday and haven't stopped thinking about it since. Her sister wrote it and did a brillaint job. She mentioned things that Toria said about Cf and how she looked at it. and it has really inspried me so much. I am now looking at My CF in a total different way. It is what makes me who i am it makes me special yeah it's a horrible and crap illness to have but reading the eulogy it made me think If i didn't have CF would i be the strong person that i am cos of my CF?

Ok i'd be a different person i know that i'd prob be out partying every weekend working and driving. But Not really apparicating life. With CF it makes you realise just how short and preciuos life really is. I am me because of my CF i am strong and a fighter. And i want to thank toria for being such a inspriation thank you sweetie xxx and to shellie for sharing the eulogy with people who couldn't attend toria's celebration of her life.

My mum said to me yesterday that i was a nicer person to know now. As i have been sch a awful person to alot of people in the past and i just never knew why and still don't. All i was doing was alienating and pushing people who loved me and wanted to be there for me away. But not anymore i am new me I am a nice me nomore being a bitch to people from now on it's going to be take each day as it comes.

I went to my bf's last night and we kinda had a row but it was good in away cos we both opened up about things. He told me he's afraid of commitment and that he can't offer me what i want which he's right he can't. He also said he isn't the loving kind which i know he's not lmao!
So after it had all cooled down we decided that we are better as friends and as soon as we had said that we both totally changed around eachother and just had a laugh about the most random things it was nice and it was the first time i had really felt like the real me around him. So i think he is now going to be one of my close friends which will be nice. We are gonna have dvd nights as i was supposed to stay last night but couldn't sleep and cos i couldn't sleep i started to feel really odd and got that awful feeling of passin out but without the pain which was weird. so asked him to take me home at like 3 in the morning i felt so bad for doing this but i thought it's not fair on either of us if i don't feel well. So he did bless him. When i got home i eventually got that pain argh! and it lasted for ages it was awful. It didn't help that i was dying for a pee lol sorry. And i knew i couldn't get up or i'd just get worse and eventually burnup. But i really had to go so i got up and went. I had to sit on the bathroom floor for 10 mins after as it was pretty bad the pain. I then got myself back to bed and just layed there and eventually fell alseep.

I have slept most of the day today as fet exhausted. I feel ok now just a little headache. anyway am going to make a cuppa before the x-factor result show i hope alexandra wins she's awesome. and i reckon britney will mime tonight i mean come on she ain't gonna sing live! adios amigos xxx

Thursday, 27 November 2008

bored bored bored

I'M SO BORED.............. i don't know what to do with myself lol. I have listened to music and bopped along to britneys album. and am now boredy bored again. my brother is hoovering oh my god i nearly fainted at the shock of it! hahaha! i watched quantum of solace last night i really enojoyed it. and i watched house bunny during the day it was also good and funny.

I am really enjoying hollyoaks late night this week niall is back and is stalking steph eeek!

I don' really have much to write about really i'm just bored. Am going round my mum's for the day tomoz so that should be cool. waiting for a few deliverys aswell to turn up one came today am waiting for 2 more think one will come monday and the other tomoz. i did all my xmas cards last night yay i'm pretty much set for xmas now x

Tuesday, 25 November 2008


Well hello all I am feeling pretty well apart from these annoying pains in my chest that i get ARGH! Every time i get up to do something like feed the aniamls let them out do washing or tidy up i get this pai and it makes me wanna pass out. Now i was told it's mucus plugs blocking my air sacks and dropping my oxygen sats but i don't think it is cos i do my physio and take my hypertonic saline which loosens it all. i just don't know . I decided to go asda yesterday as i felt good and said to my dad i won't take the wheelchair as i feel full of energy. well after 10mins of walking around i started feeling light headed and then the wonderful chest pain kicked in. and i had to sit down. after about 10mins i started to feel a bit better i just looked like someone had thrown a load of water t my face lol. I decided to try and carryon shopping but after walking just 2 steps i could tell that my body wasn't going to let me so my dad told me to go wait in the car. I was not happy with myself as i just want to be able to do normal things. it's kinda even scarier now cos i have a bf and am worried bout if he wants to go out places hopefully he'll be bring like me and wanna stay in especially with it being so cold out lol. anyway i'm staying happy and just getting on with things i know my family don't expect me to do much so i feel abit better bout not helping out more. I've nearly done my xmas shopping i done it pretty much all online again this year hehe. just got one more order of stuff to do next week and then i'm done. :) hopefully can put the tree up soon i love chritsmas cos of the food mmmmm should hit 50kgs in no time ;) xxx

Saturday, 22 November 2008

From me to you. <3

It was Toria's funeral yesterday but cos i haven't been very well and there was a risk of cross infection So it was best i didn't go. I decided as a way of remembering toria and saying goodbye i would release a ballon with a note attached. I decided that dunstable downs was the best place as it is high up and windy.

So me and my mum went clintons Ian (my mum's fiancee waited in the car for us) i was going to get a piglet 1 but my mum then pointed out the me to you bear and i thought this was so much better then piglet. So we got one and as i got in the car with it it had started to leak helium :( i was a bit upset my mum took it back to the shop and returned with a nice new one i was chuffed :).

We then drove to dunstable downs. When we got there my mum said it's going to blow behind us and not out over the hills which is what i wanted it to do. so we walked up the path a little way and we both were worried that when i released it it would bounce along the ground and not go up. I let it go and it floated up into the sky it was so lovely to watch as it was going so high up after about 10mins it had dissappeared into the clouds ready for toria to catch it. It made me feel so sad and so happy at the same time i was sad cos i miss her so much and wish she was still here today. But i was happy that i could do something to say goodbye in my own way. I think it's prob still out there somewhere floating about :)

RIP toria i'll remember you forever xxxx

Thursday, 20 November 2008

END of my 10th lot of iv's woooooo!

Had clinic today all was fab! I had lost a kg last week and was very upset bout it but today i had gained it again woooo! the docs and dietian were all pretty shocked as for me this is a big thing as before if i lost a kg it was gone and would be so hard to get back but this hasn't been hard. My lung function is up a bit not majorly but it's never gonna be great but it's up so again i'm happy. I went in my wheelchair i probably could of walked but was bit nervous bout tiring myself out. my oxygen sats were 89% which i was worried about but the doc seemed ok with it so it stopped me worrying. i have to go back in a month hopefully things will be good still. gonna take some choccies and xmas cards with me next time actually there prob fed up of chocolates so will take in some tubs of haribo lol something different!

Am at my mum's now til saturday gonna come stay here every other week for a few days change of scenery. not much else to report really just gonna chill.

Saturday, 15 November 2008

Hurray for hypertonic saline!

Yes it is briallant i have been using it for a few days it is working well. I haven't done alot today just chilled and watched tv and ate yea my appetite was a bit better today i'm pleased to say hurray. My dad said i seem very churpy today and i feel it lol. I haven't really got much to write about to be honest lol maybe i'll have more gossip tomoz I'm off to watch resident evil 3 lol ZOMBIES!!!!!!!!!!!!!!!!

Friday, 14 November 2008


ARGH! I had a checkup yesterday as it was mid iv's and i have lost a kg ARGH!!!!!!!!!!!!!!!
I'm not impressed stupid bumhole poo sticks bumhole chest infection! it is getting in my way of eating rargh........! But I must remain calm cool collected and most of all postive otherwise i'll end up crying and making myself feel worse and just generally pants! I will gain the weight back onc this pooey infection is under control. And then i shall be grabbing that 50kg's with both hands and laughing saying hahahahaha i got you bitch yeah i got you! Sorry if i sound loopey im just in one of those moods lol laughter is heping me stay postive.

On a better note i played the xbox with my brother today we played burnout 3 road rage and i beat him 20-15 ahahahahahha! he was not happy and said i was cheating funny that i've never played the game before today hehe! He's such a bad loser!

I was reading the paper about baby p today my god it's so awful what he went through. i signed the suns petition to have the people who let him down sacked. I hope the peeple who done this rot in jail and never get to enjoy life again they don't deserve to after what they did to that innocent defencless boy R.I.P baby P x

Anyway it's nearly time for my iv's was going to see whats on tv but so far have found nothing it's children in need tonight i find that a bit boring tho x

Thursday, 13 November 2008

physio is.....

A huge pain in the arse! not literally tho... Anyway it's just gone 2AM and i am awake as i had to get up and do some physio as my chest was so tight argh! bare in mind i done physio about half 8 after my hot bath as i always feel very lose after. Anyway i struggled getting stuff up as it has been so thick lately.

I have started to feel better in myself and am getting bit better at gettng up the stairs sometimes lol sometimes it's still abit much. I'm still sleeping downstairs on the sofa as it's easier then going up and down the stairs all the time to keep getting my meds. Tuesday lisa one of the CF nurses came to see me for a chat and some blood tests. I told her i was starting to feel better and my oxygen sats had gone back upto to 93% hurray! Well i was feeling better then last night after my bath i did physio then my neb and felt ok then bout half a hour later i started feeling very tight chested and had my inhaler this didn't help and i started to feel sick and achey. I didd my iv's as normal and still felt rough. Then my chest really stated hurting it started off in the middle then it moved to my right side it was so painful i couldnt lay down i was up all night in tears it hurt so much my dad came down at one point and gave me a hug and sat with me for a while i told him he should go to bed as he h ad to wrok the next day. He did and told me to text him if i got worse. I decided i felt so tired that i was just gonna laydown and grit my teeth through the pain. Then my cat came and layed on my chest and snuggled up. i eventually fell off to sleep. I woke up about 7am and was still in pain but it was a bit duller at this point. i decided to sleep all day and just wake up to have a milkshake and do my iv's i did this and by the time my dad got home at 6pm the pain had totally gone thank god! I honestly have never felt something like that before it was awful. I have hospital tomoz so will ask what it could of been i was thinking sticky mucus but when i tried getting it all up it wasn't moving maybe a pulled muscle? Nah i've pulled a muscle before it was never that painful. we'll see what is said tomoz. I am going to have a 3rd week of iv's as they have only just kicked in this week. so thought it was the best thing to do. i think i have lost some weight aswell cos this chest infection hit me pretty hard my poor body has taken a beating.I blame the flu jab i had i went down hill not long after it and i never have problems with them argh!! But my saying is i may not be winning the battle but i shall win the war lol if that makes any sense at all! Anyway i should try and get some shut eye now that i can reath a bit better now my lungs are a bit emptier. nighty night don't let the bed bugs bite xxx

Thursday, 6 November 2008

the good and the bad!

Hello :) I had clinic today as i was mid ivs it was decided that i should ahve my meroepneum changed to tazocin as mero wasn't working so am on tazocin and colomycin iv's. gotta go back next week. my weight has gon from 46kgs to 46.5kgs which is good considering i've been really bad and pretty much living off my supplements lol. the dieticain said to continue that if it's all i can manage at the moment. It's not that i'm not hungry it's just i'm to tired to get up and cook or prepare something so supplements are much easier just grab one and drink lol althought have had to use scandi shakes as have run out of fortisip :( gotta pick my prescription up tomoz.

I also dicussed going to Toria's funeral. They said it's my decision but if there is alot of people with CF going at this time with my chest being bad and me trying to get my weight up so i can be assesed for transplant that it would be a big risk and could make me ill again also with the whole emotional side of it to. i know Toria would understand and be happier if i kept myself well and was able to get on the transplant list. I did feel bad about not going but i do know it could be risky and could even jeopordise the chances of me getting on the list if i catch something bad. plus i'm fighting a tough infection at the moment that seems to be a sttubborn bugger but never fear i will win the war lol!

I have got halfway through my xmas shopping now bought my mum some presents today and have got all my brothers and ordeered my dad's presents today so should be here sometime next week or even tomoz or saturday. Also ordered my mum's fiancee a present. i'm pretty stuck on what else to get my mum tho lol.

I'm going shopping again with my mum tomoz to finish getting some stuff for my dad. :)

Tuesday, 4 November 2008

round 10....DINGDING

Well i dissapeared into hospital last wednesday as my chest was pretty pants! my lung function had dropped quite abit so was very concerened my oxygen sat were down to 89 which is low for me as mine normally are about 93/94 so was very concerned i didn't wanna go in but was talked round lol.

I had a oxygen sats machince on at night to measure my pulse and sats to see how far they dropped when i slept although i hardly slept as everytime i drifted off the machince alarmed cos my sats had dropped low. My sats at 1 point were 53% which is not good. So it was decided the next night to try me on oxygen over night and then prick my ear in the morning to check my blood gases and to make sure my cardon dioxide wasn't to high. It turned out to be normal with oxygen on so the decision was made for me to have it on over night. was kinda unhappy cos i always said i'd never let it get to tis stage but it has and now it has not alot i can really do about it but just get on with it. there is also talk about having oxygen during the day for when i move around as my sats drop quite low again. But again not happy bout it but if i happens it happens gotta get on with it. and if it makes it a bit easier to breath then suppose it ain't gonna be that bad. I'm more just annoyeed at the fact i know i'll get people looking at me feeling sorry for me which i really don't like.

So anyway came home friday evening and am on mereopneum and colomycin iv's which colomycin is a new one for me i have always only had it in neb so am having a few side affects my skin is getting really spotty and i keep staggering around like i'm drunk it's annoying. and this is also the 10th lot of iv's this year hence the blog title.

I've started my xmas shopping got all my brothers presents just gotta order my dads this week and am trying to decided what to get my mum lol. I tink i will struggle end of november with y money as my DLA is changing and will no longer be paid with my income support and instead will be paid on it's own every 4 weeks which is a pain in the bum so don't know how i'm gonna cope! so we'll see.

I spoke to my hospital today as clinovia forgot to deliver my colomycin today whoops. it got delivered eventually lol one of the cf team isn't sure if i should go to toria's funeral cos of cross infection. which to be honest i could do with out getting anything else right now. I'm sure toria would undertand tho. am thinking of realeasing a ballon of piglet on the day with a nice note attached.

I'm so bored this evening there is nothing on tv argh!!!!

my mum said she might come round tomoz if she finishes early tonight. be nice to see her. have been sleeping downstairs the past few weeks it's just alot easier with eing on iv's as my little fridge is dwn here plus i'm right near the kitchen.

anyway tata for now :)

Monday, 27 October 2008

really had enough

I'm so fed up really really am! Toria's death has really hit me so hard it has made me realise how real everything is and how short life is. Today a friend was moaning bout her rubbish her life is how can she sit there and say that? 1 she has a beautiful baby boy who she will no doubt she grow up and take his first steps and say his first word. Toria will never get to have that and she never onc moaned about how hard it is being a mum even with her Cf aswell she was amazing. And i wish she was still hear today to see edward grow up and walk and talk but she won't and it breaks my heart so much.

All my hard work with my weight is over it's all going again so can kiss goddbye to my transplant.

I had a dream about toria last night was very wierd and upsetting i dreamt that i was on msn and then she suddnely signed in and was chatting to me even thought she had passed away was very weird didn't know what to make of it! I feel really bad cos i know toria wouldn't want me to feel so down about her passing away and would want me to get on the list but it's just so hard not to have her around for some good advice plus she never got to hear about harefield :( i miss her loads. everytime i see a jammy dodger bar i think of her as she decided to go buy some one time cos i raved about them contstantly lol. I wanna go to her funeral but i know i'm just to ill at the moment. So i think i'll send some flowers so that she knows i'm thinking of her. Her sister Shelie sent me a lovely message the other day thanking me for all my messages to toria. Everytime shellie said you'll never guess who this message is from toria would roll her eyes and shurg knowingly and shellie would say it's from Jo and toria would smile. it made me feel happy that she knew i was always thinking of her. The teddy i sent was also sat at the end of her bed which is sweet. Just wish she was hear to help me through this rough patch now. she'd give me some conforting words and make me smile with what she says she always knew the right things to say :) anyway gonna go climb the stairs when i say climb i pretty much mean crawl so i can have a bath am sleeping downstairs tonight though saves me going up and down tomoz.

going hospital wednesday as cass the cf nurse is worried bout my chest and appetite my dad is taking me though cos my mum is to busy everything comes before my health that's how it feels anyway!

Saturday, 25 October 2008


So much has changed the past few days. Toria has left our world which i still can't believe.
I also talked to my mum about exactly how i was feeling and she has suggested that i live with her in the week so that i ca have the help i need but i'm not sure as i miss my dad and animals so much. I also rang my hospital yesterday as i don't feel well and have lost a bit of weight they just kept saying how hard this week had been with toria passing and everything. I really didn't need to hear that it has been hard but i'm ill cos of my chest. So i have taken actions into my own hands seeing as they didn't wanna listen and am taking some iv's that i had left over from all the times i've had some. I alway seem to be given extra lol i just need to mix them myself which is ok . If i don't start perking up within the next week i shall ring hospital again. I have styaed here at my mum's for the week which has been nice but upsetting cos it's highlighted how bad things have got i physically can't climb stairs anymore. and it's getting much harder and tiring to dress myself. and i'm using loads more oxygen then i normally do and shopping oh my god what a nightmare if i don't take my wheelchair i get to the point where i wanna sit down on the floor and not move again. i really can't beleive how fast i'm going down hill. it's scary. and i hate the ffact that i have to wait til i'm 50kgs before harefield will have me in for assesment i need to be on the list now or i'm afraid i won't make it so much going through my head it's very hard and emotional x

Thursday, 23 October 2008

Goodbye Toria

My dear friend Toria lost her fight against CF last night. I was abit concerened that something wasn't right as there was no update posted last night. I found this morning when my friend text me and said i'm so sorry about Toria Jo. I txt back saying it's ok she's still fighting hard of course not realising she had passed away. I checked Toria's facebook profile and immediately saw a post saying R.I.P I have to say it really gutted me and shocked me. I really thought that she would be ok but i'm so gutted that she didn't. she was a brillant friend to me and lot's of other people. wheneva i was feeling angry or upset about CF she'd always say something to cheer me up. I was readin all the messages she sent me today and they made me laugh and smile and cry. She always had a great way of putting things. I remember the night i took her and oli (also has CF) Clubbing it was a really good night we had a laugh and toria looked really pretty that night. I just wish i had taken some pictures of that night. She was one of the people who talked me into getting a port fitted. She tried to talk me into a feeding tube but she knew she'd never get me to have one lol she told me to many horror stories about hers hehe. I also remember the first time i found out she was pregnant i was so shocked she had posted it on her facebook status it said toria' going to be a mummy in 3 weeks i was like are you joking lol and she was like nope i'm going to be a mummy. And then she had beautiful edward she told me she wanted to call him something fabulous like tarquin lol she was so funny. she always saw the best in people. I'm going to miss her updating her profile with pictures of her luke and edward every month as she loved taking pics of them all. It hurts when i think how such an amazing woman could be taken from this world who had her whole life ahead of her and had so much to live for it's just so unfair and i never thought this day would ever come. I hate so much that it has. I know toria wouldn't want me to be upset she'd want me to smile at memories of things she's said and done and also she'd be rooting for me to gain those extra 4kgs. as i know she was proud of me for how well i had done so fair. I'm always going to remember toria and will keep every message she has ever sent me. i will miss you so much toria you were so brave and fought so hard. Rest and breathe easy now and watch over us all. love you lot's From Jo xxxxxx

I added this picture of toria as it is one of my faves of her and was so proud of her when she done it.

Toria crossland 13/02/1985 - 22/10/2008 Forever in my thoughts R.I.P sweetie xxxx

Tuesday, 21 October 2008

having a break

Am spending a few days with my mum as i've been really ill and it's taken alot out of me. So she's going to take care of me till i get my self back to my normal strength if i can. Been conctsntly thinking bout toria and i'm so upset bout the recent news that the docs can do nomore for her but make her comfortable. she's done so well to get as far as she has i just hope she keeps fighting for her friends and families sake. she got the teddy i sent her which made me a happy it's sitting on the end of her bed which is nice. i'm just hoping for a miracle now she's been a good friend of mine since we met 5 years a go at the chruchill and i couldn't stand the thought of losing such a fab person. xx hang in there hun love you lot's xxx

Thursday, 16 October 2008

postive thoughts!

After a few bad days of feeling really pants and down. I'm beggining to feel more positive. I sat down with my dad and told him how i'm feeling and how hard everyday is for me he said he understands and is going to speak to my brother about being more helpful.I think my dad finds it really hard to deal with as he said i'm his little baby and children aren't supposed to die first they should out live thier parents and he said it's his goal in life to get me through all of this and get me healhty with some nice new lungs. which was sweet and made me cry i think he nearly cried too lol. so now i'm just trying to get myself on track and chillout and take my time with things and not rush. :) I sent toria a get well bear today hopefully she will receieve it tomoz. I read on her wall on facebook that she had a visit from little baby edward which is fab she was aware enough to see him and ask for him. which i am taking as a good sign. Luke has been at her side constantly which is so sweet of him .

Monday, 13 October 2008

who am i?

I feel so totally alone and lost i just wanna stay in bed and sleep and never get up again i've actually never felt this low before in my life and i hate it. I'm wishing i never went harefield as it's since then i've gone totally down hill with my mental state. I'm trying so hard to gain these last 4 kgs and i'm just getting so wound up and upset by it all. I'm contantsly waking up with headaches in the middle of the night at the and in the mornings that only go away after 15-20 mins of oxygen. So i'm starting to feel like i'm getting even worse and that i'm going to be relying on my oxygen alot more very soon. my appetite is not great at the moment. even withthe megace i'm struggling maybe it's cos my bodys readjusting to coming off the iv's maybe it's all stress dunno.

Had a huge row with my dad and brother last night again. I had gone upstairs to bed and forgot to remind my dad that my oxygen cylinder needed to be brought up by this time it was to late and he was in bed. So i asked my brother to get it for me and what happens i get shouted at as usual for asking for help. He was moaning about his foot cos last sunday he dropped a 40kg box on it and it's really swollen and he was going your such a annoying cow i've broken my bloody foot so this should be fun getting this stupid oxygen thing up the stairs. He won't go doctors about his foot so therefore i don't feel sorry for him and he doesn't even know if he's broken it my dad just said you should get it looked at incase it's broken my dad ain't a bloody doctor i swear my brother is a total useless moron.!!! anyway he brought it up and just dumped it in my room didn't bother putting it down and making sure it was safe and wouldn't fall over. Then what happens oh it falls over cos the idiot hadn't put it on the carpet properly. So my dad heard all the noise and got up and decided to have a go at me saying why do i alwasy do this? Do what? ask for my oxygen cylinder to be brought up? see when i get tired from tidying up or doing my washing i then get moaned at for tiring myself out and not asking for HELP!!! but again when i do ask for help i get shouted at then by my arsehole brother! I just feel like giving up i really do. I feel like i'm such a burden on everyone cos i need help every now and then. i kept trying to lift my oxygen cylinder up but guess what it's to heavy for me and cos i was getting all worked up abaout the fact that i couldn't get it up i started finding it hard to breath so there i am crying my eyes out struggling to breath not being able to get my oxygen cylinder up to have some oxygen and my dad and my brother just left me there. that really hurt the most. I ended up laying on the floor with my oxygen cylinder and managed to get it turned on so i could breath. after about 20mins i had calmed down and then spent half an hour trying to left it off the floor i dunno how the hell i done it but evenutally it managed to get it up and hurt my arm with my picc line in oh joy that's probably buggered now as it hurts like hell so thanks dad and my kind caring brother for being total twats!!!!

Friday, 10 October 2008

things can only get better right?

Haven't written for a little while been away with the fairys and had loads on my mind. Had hospital yesterday as it was end of iv's thank god! they really knocked me for six it was a drug i hadn't had for ages so it's understandable why my body didn't like it. My lung function is upto 0.8 which i'm pleased about as it has been ages since it was that. My weight is upto 46kgs so only need 4 more to get to 50 and then i can ring harefield and go to the next stage of transplant assesement. My mum has been taking more time to help me now she came round wednesday and helped me tidy my room and hoovered it for me as it was taking me so long to do. i did all my washing but it really did tire me out! it's amzing the simplest things are such hard work! I need to try and calm down abit though as i'm stressing myself out by trying to do to much.
I'm feeling alot better in myself but keep waking up with these awful headaches that take ages to go or if i use my oxygen they go.
Cause i gained so much weight i decided to treat myself and buy a new phone. :)

I've been thinking alot about toria she's putting up such a strong fight and i'm so proud of her. she has so much to live for.

Had a good night monday i stayed at my bf's sorry he's now my ex again! he told me he wanted to be with me and see how things go. and then after monday he went all funny and quiet. then last night he decided to say he doesn't want a relationship but wants to be there for me. i just said why say you want a relationship to my face then. then he said cause i knew you wouldn't talk to me again if i told you the truth ARGH!!!!! last thing i needed was him messing with my head. But i'm gonna be strong and not let it phase me cause i'm doing so bloody well.

Saturday, 4 October 2008

thinking of toria

My friend toria who also has CF is very very ill at the moment and i am very very upset there is a good cance she won't make it but i'm so hoping she does. everytime something crap happens with my health she always tries to pick me up with her great comforting words. I have decided that to show her how much i'm thinking of her that i'm going to write on her facebook wall everyday till she is well enough to reply. I' sending all my positive vibes her way she'll get through this she's strong and a fighter. love you toria and thinking of you my sweet. big hugs and kisses to you and that goreause little boy of yours and big hugs to luke who i know is being such a great guy and staying by your side xxx

Thursday, 2 October 2008

harefield yesteday and hospital today...

Ok had harefield yesterday which was just basically the first meet and greet about transplant. It was a very long day which was to be expected lot's of tests and blood taken. met with the people there. I took my wheelchair thinking it was going to be all spread out but it's very close together all the departments which is good but it was still best as it was a long day. Anyway I did all tests by about half then me my mum and dad went and had some lunch my mum moaned the whole dy as everything was taking so long she wound me up and annoyed me but can't be bothered to write about that anymore cos it will just annoy me again let's just say i'm not talking to her at this moment in time! anyway so after lunch we went back to the clinic area and had to wait to see the registar who was very nice lol He asked bout my medication and just basic history then he dissapeared to talk to mr clarby He was also very nice and didn't sugar coat anythig was just very honest . My dad asked him if i could continue on these lungs for another 5 years and then have the transplant as you may not live after it or five years down the line but we'll see anyway he turned to me and said do you really wanna hear this and i said yes and he said there is over 50% chance of me not being hear in 2 years time. big shock my dad welled up but didn't cry i cried in the car on the way home but am ok bout it all now.

Had my mid iv's checkup today all is ok lost a little weight but that's cos i have been sick from them but i'll gain it back. had blood gases down to as i have been having headaches in the morning. and gotta go back next week for end of iv's YAY lol xx

Saturday, 27 September 2008

bad night and bad day

I had a awful night last night I had my mereopnuem and then had my gentamicin I then started to feel very sick and was trying so hard not to vomit. But unfortunately i couldn't help it and vomitted i felt even worse after. When my gentamicin had finished i decided to go to bed i slept pretty well but did keep waking every few hours. I woke up at half 6 and felt sick again so sat in the bathroom for a little while but luckily i didn't vomit. I then decided to go get my meds and a milkshake as i really wanted to keep eating but thought i'd give my tumy a rest and just have a fortisip which managed to stay down. I also found some sickness tablets. I did my iv's then decided to have another sleep as was feeling tired still. I woke up again about half 9 as the cat was meowing I felt so drained that i didn't want to get up so i banged on my brothers wall and asked hi to let the cat out which he did. I then fell back to sleep and woke again at 12ish. I was feeling hungry so went to get some thing to eat and decided to make a cappucino aswell as i alwasy have a bit more energy after one. as i was boiling the kettle i started to feel the familar pain in my right shoulder and then started to think oh no here we go so i went into the living room and sat down on the sofa the pain was going slighty So i decided to carry on making my cappucino but the pain had come back and was getting worse so i sat on the kitchen floor my dog kept coming over and trying to get my atention bless him. I thought i had it under control by taking deep breaths but then the pain started to move down my arm and chest and then i knew i couldn't stop it then i started burning up and sweat was dripping off of me i decided the only way to try and stay consicous was to lay on the kitchen floor after about 10mins i was starting to feel it fading it took me another 10 mins to get up off the floor. I continued doing what i had been doing the i went back upto bed. i did my 2 o clcok iv's then watched some tv downstairs and decided not to move as the pain ket coming back everytime i did something it seems to be ok now but am just taking it easy. I really wish someone knew what the hell it was cos it's so scary when it happens and it's so unpredictable for hen it's going to come on and the fact that i have no control over it when it does come. anyway am going to watch a bit of tv before my 10 o clock iv's hopefully i'll feel ok with these ones x

Thursday, 25 September 2008

iv's again

Well went to hospital today and my lung function was down a tiny bit more so am on iv's again on mereopnuem which haven't had for a long time so hopefully will do some good. also my bmi is up to 16.06 woooo i'm so happy and my weight is 46kgs it's the most i have ever weighed hehe. got to do my meds in a mo my bro has come to watch me as i haven't had it for a while so duno if it's gonna cause me to vomit or not we shall soon see am gonna spend the day with my mum tomoz as she has asked to see me. will miss my new laptop tho which i got yesterday thanks to my daddy yes i'm spoilt i'm the apple of his eye lol anyway must go and mix these drugs up clinovia come tomoz so won't have to mix them after the morning :) xx

Wednesday, 24 September 2008

Broken laptop

So yesterday i broke my laptop not on purpose but by accident. I forgot to turn my anti virus on and about an hour later my laptop started getting these error messages i didn't think much of it at the time as i was about to turn it off. But then later that day when i went to use it again it wouldn't load windows xp up and kept blue screening so did a diagnostics test and it says the memory has failed whoops! so my dad is going to take it to pc world to seeif it can be saved i'm a bit guttd cos all my music and photots were on there : ( I was worried that i'd be left without any interent access but my dad kindly said i can use his comp when he's at work so here i am lol using it. I'm looking to see if i can get a laptop for 100 quid as i could prob afford that at the moment. anyway i shall still be ding my blogs when i can get on the comp . I have hospita tomoz as i'm probably going onto iv's my chest is being a bit more productive the past few days the little bugger argh! Also found out i have to have all my denal and vaccines up to dae for transplant eeeek! i hate dentists lol got my flu jab letter hrough today get one everyone year must be nearly flu season lol anyway will let everyone knowhow hospial goes tomoz xx

Wednesday, 17 September 2008

clinic today

well I woke up and was dying for a cup of coffee but wasn't allowed one cosit had milk in doh! I wasn't allowed to eat either lol i was straving. I Arrived at hospital about half 9 and went to clinic i got weighed and was pleased to see my weight had gone up from 44.9 to 45.3 yay i'm over the 45 mark whoop whoop! anyway i then was sent to a room as we get put in our own rooms now to stop cross infection which i think is a good idea. So i was in the room and lisa the cf nurse was chatting to me asking how i was and stuff she put the oxygen sat machine on m finger and it said 81% I was like wow that's low so she took it off and said we'll do it again in a min.
She left then my fave physio anna came in as she was back yay! She was going through my physio and nebs i then gave her a sputum sample that i had done that morning when i woke up i always like to have one prepared lol. She then did the sat machine again and it said 94% i was happier with that :) I then did m lung function which was fev1 1.53 which was down a little from the finish of my last lot of iv's The other number was 0.5 i don't quite understand that one tho lol. After that we did some AD so that anna could check that my technic was ok she was pleased with it and just told me to breath out abit more gently i was doing it abit to forcefully!
After that it was time for my ultrasound so off i went with my dad to the x-ray department.
I thought i was going to have to wait for ages as i sometimes do lol but i was the only patient there and was called staright away i explained to the radiographer that they think there is possibly gall stones there. The radiographer put loads of cold gel on my tummy don't you jst hate that it's so cold argh lol! After that had finished i went back to clinic and saw the doctor he checked to see if the results from the scan were up yet as the radiographer said she'd put them up asap. But they weren't so he said he'd check again in abit we went through my medication and discussed my chest and that i should come up again next week to possibly start iv's depending on what my blood results say. He looked at my x-ray from a few weeks ago and said it don't look great but that's obviously cos of the cf but that it looked not to bad if that makes sense i got what he ment lol. He asked me about the pain i get and said it sounds more chest related and could possibly be plurasy however it's spelt lol But my dad's had that and the pain was constant whereas mine comes on at random times and lasts about 10 mins. I think there mind boggled lol
he checked the scans again for a report but it still wasn't up lol He then mentioned about having some bloods taken so i was like ok cool no probs and then i asked if lisa could do it as she's better then the woman in the blood lab lol she was fine with doing it and the doctor went to find her. the dietician came to seeme and i told her i'd upped my megace dose to 2 tablets cos i was feeling abit rubbish and she was fine with it and i can keep taking 2 but just gotta keep an eye on my blood sugars. also down to 5 creon with a meal instead of 6. After that i went to the treament centre so lisa could take some blood my veins were being naughty and it took 4 attempts but we got there eveuntually lol. Then it was off home well i say home i went asda to get some more popcorn then to boots to put my prescription in then home to a cup of tea and a nap lol now am just taking it easy and reflecting on the day i'm very pleased how it all went oh i forgot to mention i do have gall stones but there quite small so are possibly not the cause of the pain but i'm going to get reffered to see someone about it :) x


I feel so angry today i just wanna scream every little thing is annoying me at the moment. It's really frustrating. ARGH! I honestly don't know why i'm feeling so angry I gues si'm just feeling like a useless waste of space at the moment what purpose do i have? I can't do anything good i can bearly do anything I JUST WANT TO SCREAM!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My ppoor dad keeps asking me whats wrong and i just burst into tears cos i just don't know anymore i feel like i'm losing myself Maybe i need my anti depressants uped i don't know will ask the hospital tomoz when i see them well i should really try and get some sleep now night night will let everyone know what happens tomoz x

Tuesday, 16 September 2008

Feeling a little down

Had a chilled weekend but noticed my chest is playing up again so i'm guessing a lovely bug has decided to make an appearance. I have clinic Thursday so will see what my blows are hopefully they'll be ok but the way my chest is i am doubting it. My appetite isn't as good as it has been i'm still taking my megacce so am still eating more then i would if i wasn't which is good. Got my ultrasound wednesday i hope they'll tell me on the day if i have gall stones or not just to give me a piece of mind.

There is this guy on the cf forum who went for transplant assesement but was told he can't go on the list cos he has a fungus ball It's something called aspergilloma which can affect people with cystic fibrosis and who have had lung problems it get's into the lung cavity and it can't be detected by the immune system cos the immune system can't fight it cos it can't get into the lung cavaity the immune system that is. It worries me cos of the infections i've had have really scarred m lungs which make it easier to catch it. You also have to keep away from birds poo, compost heaps, rotten vegtables, dead leaves. I really feel for the guy who has it I dunno what he must be feeling right now it's just so unfair on him.

I had a argument with my ex best mate last night cos she just won't leave her ex who's my best mate alone it's annoying. She then decided to do the whole the world has to revolve around you Jo just cos of your stupid illness and that i want everyone to feel sorry for me . It really annoyed me cos i hardly ever moan about anything i do my best and get on with it. Half the time my parents tell me i've got a infection cos i don't like to complain! They can just tell by the difference in me i eat less and sleep loads and also cough heaps. I don't want anyone to feel sorry for me yes Cf is a horrible illness not the easiest thing to live with either But still don't want people feeling sorry for me like when people used to say to ou should give up smoking cos of my cough i would just simply say i'm coughing cos i have Cf and smile. Then they'd turn round and say oh you poor thing the smile would soon go off my face! THING? i'm not a thing i'm a person who just happens to have a nasty illness I'm the same as everyone else not an alien or monster jeez!
My ex best mate never understood cos all her problems were self inflicted she used to do coke and drink every chance she had which was everyday that's why she was always ill. and she wonders why i didn't wanna know. I'm just so annoyed cos i don't ask for alot of help i try as much as possible to do stuff on my own. anyway i'm getting a headache from this comp now so gonna go have a nice bath to relax me x

Friday, 12 September 2008

a day with the lady i call mum lol

I was supposed to go round yesterday but had slpet badly the night before so decided to just have a day of rest. I woke up at half 6 this morning had my breakfast then got washed and dressed. I am starting to think i need to buy bigger jeans as these ones are digging into my hips argh! Although i am happy i am gaining weight it's just a pain when i throw all my size 8 jeans away thinking i'd never fit into them again. I weigh 7stone 3pounds i have'nt weighed this much for nearly 3 years i'm so pleased with myself. I got to my mum's house at 8 this morning and her and ian (her fiancee) were playing tennis on the wii i always laugh when they both play togther as ian is such a bad loser it's hilarious. After she'd finished the game my mum made us all a nice cuppa tea and we had a little chat bout how i had been. Ian then went to bed as he had worked the night before so was tired. Me and my mum chilled out and watched telly and chatted away about my possibly having gall stones and how i would feel if i do have them. I told her in away i'll be relevied as it then means the pain is not connected to my right lung which is what has me worried the most but at the same time a little scared as i am meeting harefield soon to dicuss transplant list and getting on it and i don't want this to get in the way of it. And also the prospect of having my gallbladder taken out doesn't exactly make me happy but guess if it is needed it has to go! I think it depends on how big the stones are and stuff we'll soon find out next thrsday after my ultra sound.

My mum's fiancee uses his wii fit everyday and always likes to be top of the score boards tables so my mum said to me today that i have to beat his scores on all the games and guess who is now top on EVERYTHING? muhahhahahahaha! I beat all of his scores he was not happy he said he is gonna reset the machine hahahaha such a bad loser! I also got my mum to play the wii fit aswell she refused to get on it cos it has to weigh you and she didn't wanna know how heavy she was i kept telling her she isn't going to be as heavy as she thinks she is. She wasn't as heavy as she thought as i had told her so she was happy about that. she seems to be a bit addicted to it now lol am now sat with her watching some pants cooking show lol. Am off back to my dads at about quarter to 6 as he is picking me up on his way home from work really fancy a cuppa tea lol oh and i ate a 15 pack of doughnuts today hahahaha go me :P x

Wednesday, 10 September 2008

been 5days

It's been 5 days since my last post Just been taking it easy as have been having my chest pain again a few times this week. It is now possible that i could have gall stones as the syptoms seem to be very much a like that of gall stones. I will find out either next week or the week after i am due my ultrasound next week. If it is that it can then hopefully be treated with medication and hopefully without needing a operation.

On a good note i did get my wii fit last friday it's great i love it i try to do at least 20 mins everyday which is tiring but it's excersise. Am gonna spend the day with my mum tomoz as am feeling a little isolated and lonely cos i don't wanna go out anywhere incase i get the chest pain again which can come on at anytime grrr! I hope this won't affect my chance of getting on the transplant list? I would be very upset if it does. My poor body is suffering at the moment But i'm trying to keep my chin up no matter how hard and frustrating it is. I refuse to cry in front of my family tho as i don't want them to see me breakdown. must stay strong lol. which is bloody hard when your depressed. eeeek!

I dyed my hair back to black again as i really had gone off the purple lol so have black hair again woooo! I think i've had a bit of a reaction to the hair dye aswell as my skin on my face has gone all dry whoops i shall be leaving my hair alone for a while i think lol. x

Friday, 5 September 2008

Why is CF so bloody horrible!

On the Cf forum somebody had posted about lung function and babies I always wanted a baby from the age of 16 up until the age of 21. But the past few months that all changed again and i realised how much i would love to be a mummy! The post just made me think how awful CF truly is although people with CF have had babies sometimes it's cost them there health and lung function. It's such an unfair illness it really is. I just wish there was someway of everyone being cured of it!

I've also been thinking bout my harefield appointment aswell as it is under a month to go. I am really hoping they will find out what this pain is that i get in my right lung I got it again yesterday and normally it's painful but not as painful as yesterday it had actually got to the point where i wanted to scream and cry But was trying to stay conscious as it makes me want to faint It's so hard to keep my self conscious tho i also burn up really badly i was soaked when i eventually felt ok! It really scares me it's now at the point where i don't wanna go out I did my shopping online yesterday so i didn't have to walk round as i was to scared it would happen in the shops as it has before i felt so embrassed as i was sitting on the floor of halfords soaking wet cos of how i'd burnt up and trying not to faint and my poor dad was standing there not knowing what to do. I'm just worried that is something bad as it is hapening more frequently. I was told at my hospital that it was due to bad infection but my chest has been really good since my last lot of iv's so i really doubt it's that plus am doing all my physio and meds i just don't know. I really hope harefield put my on the list for new lungs.

I got my wii fit today which is a belated birthday gift from my brother. It's really fun and addictive but I have to take it easy as think i over done it today as i'm so tired.

Monday, 1 September 2008


Had a pretty quiet and chilled weekend saturday spent it chilling and watching tv and eating and then sunday went round my mum's for some dinner she made chicken korma YUMMY! Then today i went round there again to spend the day was quite boring for awhile lol mainly cos i was tired but had a little sleep on the sofa and was wide awake after. She had to go docs and a parcel for my step-dad was coming that was for his birthday which was last monday lol it was from me though. Got him a big box of childhood memory sweets as he loves sweets. Me and my mum played tennis on the wii I beat her twice and then she kept winning which was very annoying lol. I then challenged he to bowling which i won at first then she got 9 strikes in a row!!!! so i just gave up lol!

My dad picked me up on his way home from work then we got mcdonalds. I then had a hot bath and now am just chilling out till big brother is on :)

Friday, 29 August 2008

purple hair

Ok so i've been trying to dye my hair back to blonde for the past week. It hasn't gone so well and my hair just kept turning orange so last night whilst shoppping at asda i thought ya know what i'm going to go for a totally different colour. I then bout a colour called cyber purple I really like it it's not to bright well i don't think it is anyway lol but it looks funky :D

I have been chilling and sleeping alot today aswell not feeling to great dunno why think it's just the weather. Haven't done any housework today thought my brother would get off his back side and do it but he didn't bother what a surprise! you'd think he had CF he's that lazy! Anyway thinking of getting a mcdonalds for dinner tonight don't really feel like cooking. Was supposed to have a phone call from the pharmacy this week saying that my vitamin e was in but they haven't called it's been over a week now. For some reason this vitamin e is always so hard to get in must come from a different country. I guess. Also need to ring up the hospital about my appointments got the second part f my annual review on the 25th they said and have had a letter through for a ultr sound for the 18th of September which is so not convenient as it will end up with me going hospital 3 weeks in a row as the 1st of oct is my harefield appointment . so gonna see if the ultrasound can be put to the same day as the rest of my annual review.

I aslo need to mention about something that is supposedly in my notes that says i have been missing appointments ????? I was fuming when my GP mentioned this to my mum she explained i have never missed a appointment. 1 time i turned up at clinic and was told i wasn't supposed to be there that day and was supposed to have been in the week before to which i then pulled out a letter stating the date of the day that i was there and i was right to have turned up on the day i did. Also the other time was when it was heavily snowing now even though it was really bad i still turned up to my appointment but guess what? The nurses and doctors hadn't come in cos of the snow! Really has annoyed me cos now i'm worried harefiled will bring it up and ask why i misssed appointments grrr!

Wednesday, 27 August 2008

Bad dreams!

I keep having really weird and bad dreams. Last night i dreamt that my cat barley was sitting at the back door waiting to come in.(this may not seem bad except my cat Barley is dead) I turned to my dad and said Barley wants to come in can i let him in please. My dad then said Barley is dead how can he be at the door. I then shouted it's him it's him . I then opened the door ran in the garden and picked him up He wriggled out of my arms as he always used to when he was alive. He was bobbing his little head around and rubbing all around my legs like he used to do and making silly little meow noises. The dream then turned to me and 2 friends back in school with a teacher who i hated called mr robinson. We had to write details about ourself down like age , date of birth, full name things like that, For some reason i couldn't write in a straight line and kept getting told off for it. Then i started having a funny turn and my mum came running into the class room and felt my head and said she's had to much creon! she then got me a coke that was in a mcdonalds cup. The dream then turned into me and my dad sitting in a car and on my lap was Barley again all curled up asleep. At this point i woke up. I keep having dreams similar to this allot recently and it's really messing me up during the day. Today i moped around all day thinking of Barley and how much i miss him. And wished he was back with me.

I even have dreams about having a lung transplant and then dying. Dunno why though because the thought of a transplant doesn't scare me.

My dad says it's my anti-depressants as his did the same to him. But i won't stop taking them cause they do keep me calmer then if i wasn't on them. I'm more controlled on them I don't have massive rows with people anymore i just keep quiet. My cf nurse Cass wants me to see a councilor that they have at clinic but i dunno i'm not the kind of person that will open up to people face to face if that makes sense. On here i can open up cos i'm not sitting in front of anyone it's very strange. My dad actually told me off today as i have been pushing myself abit to much recently I have got in the habit of tidying up everyday and all the time and it's really taking it out of me by the end of the day. So he's just worried that i'm gonna make myself ill again. As it is i have a cold sore under my nose which apparently is a sign of being run down. and got a very irrated cough at the moment which i'm finding annoying. And have also been getting the pain in my right lung again that makes me want to pass out. No one can still tell me what this is so hopefully harefield will be able to. Plus i have sore eyes dunno if cos of the hair dye or what but on my eyelids it looks burnt it's very red and sore. anyways i'm exhausted and need some sleep so think it's time to go to bed hopefully i won't have anymore awful dreams x

Tuesday, 26 August 2008

Really really annoyed......!!!!

I am so angry today. I've found out that one of my close mates has been having trouble with his ex again she's taken all his mates away and turning them against him which is not on. Also this ex of his used to be one of my best friends but cos my health got so bad to the point i stopped going out alot she called me a boring cow so i fell out with her and cos the way she treated my mate anyway Now found out that she is going to a birthday night out that i was invited to and that my other best mate is going to really think this is gonna turn out bad against me. Already don't have a lotof friends because i became "BORING" I'm far from bloody boring i'm just ill and unable to do the things i enjoy but i'd rather be able to breath then try and do the things i like and risk my health it's not worht it and you know what? If people cant god damn understand that then there totally not worth being my bloody friends.

Also my ex boyfriend is trying to mess with my head again by saying how he supposedly luvs the way i drive him up the wall and out of his mind! I said to him that's the kind of thing you say to someone you love. He then never replied then i heard from him the other day and he was like i've been thinking bout what you said and still am thinking bout it. So i gave him a ultimatium by 6pm today he had to decide what he wanted and if i didn't hear from him that would be it i would be gone for good and he'd never have a chance to be with me again. I didn't hear from him so now that'd it. As much as it hurts me to say it i can't keep going round in a circle 3 bloody years this has been going on it's time to put a stop to it. I have so much more important things to think about and put my heart into.

Monday, 25 August 2008

Bad hair

Well friday i went shopping and bought some hair dye i had decided to go blonde again. Saturday i decided to actually dye it and it turned bright orange eeeeek! luckily i had another box of blonde so popped that on later that day again it stayed orange. My dad bought me some ore the next day and i dyed it again it still stayed orangey. then my last resort was to put light brown over it well it didn't go brown more of a golden blonde with hints of ginger in it lol Gonna leave it for a while now as it will really damage my hair if i put anymore on. Plus would rathe rhave this colour hair then none at all hehex

Friday, 22 August 2008

chilled out

Today has been a very chilled day well till now that is lol. Woke up at 10 had some breakfast and a cappuccino then chilled out and played with dave and his pull toy. then Inky came and joined us so i decided to brush them both and wiped there coats down with dog and cat coat wipes so they smelt nice and clean lol. Inky loved it bless him. After that i had a hours nap then got up and did some house work i did the dish washer and then cleaned the floor it took me ages as i can't stand up and use the mop so was sat on the floor using a sponge lol. After that i emptied the dishwasher and then chilled out and had some lunch and watched hancock i love that film. when my dad came home from work i got my self sorted and we took my bro to work then poppped to asda to get some more food. It's actually getting harder to get around now swear my lungs are worse but that's to be expected just gotta deal with it. Anyway i am off to watch the tudors bye x

Thursday, 21 August 2008

I really don't like wasps!!!

Woke up at half 9 this morning and had some breakfast my normal mini wheatabixs with banana in them yummy and a cappuccino. i went and sat back in bed and watched some telly. I heard a wasp fly in the window so wasn't to bothered as i thought he couldn't get through the blinds but guess what? he bloody did i wasn't happy he then kept landing on my pillow at this point i was out of the bed like a shot. it eventually flew back in the blinds and then back out into my room again my cat was wiggly his little bum ready to jump on it but i grabbed him as didn't want him to get stung. the Wasp then flew back out the blind and sat on the window so i got my magazine and shuffled the little bugger out and shut my window! I then went back to sleep but it was hard as i kept thinking about the stupid wasp and how it had been on my pillow. Eventually i nodded off again.

When i woke up i decided to have some lunch so had lunch and chilled out on the sofa with my dog dave. I decided to watch sex and the city movie. after that i checked my emails then my dad came home and i just chilled out with him and watched tv. So all in all not done much. To be honest i'm to tired to do alot at the moment.

Wednesday, 20 August 2008

Annual review!

Had my annual review today. So had to starve as had to have my glucose blood sugars done. Got to the hospital at 8.30 had bloods done the lady had to stick me twice as the butterfly needle she used wasn't very good they've got new ones or something. I have always thought butterfly needles are not great anyway as surely the blood starts to clot in the long tube bit? well I did mention that and she said yeah it does especially if your taking alot and the blood comes through slowly which mine did lol . Anyway after that went to clinic where the nurses were there is one nurse who i get on well with called Cass. The physio Mixed up the "lovely" glucose drink for me. and it took me a good 10 mins to drink as it is so foul tasting. After that had a chat with the physio she is pleased with how i'm doing there abit concerned bout my lungs as after 3 weeks of iv's i'm still not that great. She checked my posture aswell as Cf's tend to hunch over abit due to all the coughing. i am slightly hunched which isn't to bad. Also my right shoulder is abit higher then my left but that could be cos i always carry my handbag on my right side lol. she also listened to my chest and said my right side sounds very crackly which makes sense as the other night i was having alot of pain with it She also felt the base of my chest and asked me to take some deep breaths My left side doesn't move as much as my right side but that's mainly due to where i had the bottom part of m lung collapse. Don't know if it's still collapsed or not but I'm sure the chest x-ray will show it if it is.

After the physio i saw the dietician she is nice and probably 1 of the only dieticians that i've ever got on with. She was pleased about my weight as it has gone up again which is great.
we talked about blood sugars and that mine have been a bit high and that maybe i should see the doctors at the diabetic clinic. there was also talk of maybe me having insulin i'm not to concerned about it as if it needs to be done then it needs to be done lol. She was saying i need to take maybe 1 more creon tablet with my meals so instead of 6 i'm to take 7 .

It was then nurse cass's turn to chat to me we went through all my medication then we discussed some things about transplant as i was a little worried that they may ask me to have a peg feeding tube (this is a tube that is put int
o your stomach so you can have feeds overnight to help boost our intake ) I'm not keen on the idea of having one so that's why i worried abit but cass says cos of m weight gain that i will likely not need one and that they may just give me a NG tube( this is a tube that is put down your nose and into your stomach) I've had one before and found it very uncomfortable but if it required for transplant then i am all for it. We then discussed my mum as it was clear i was not happy. My mum and her fiancee took me today which is good of them but at the same time it make sme feel crap. My mum moans about everything when i'm at hospital like how long is it gonna take? who you gotta see? Today she was like i don't wanna be here all bloody day... My reply was yes this is fun for me to!!! She winds me up big time. My mum's fiancee was then like don't you get snotty today! Hello this is happening to me not you but out! I feel like it's such a chore for her to take me to hospital you'd think being my mother she wouldn't mind but there ya go.
Like if i'm ill i have to go to her house if i wanna see her she won't come round here. As she has to much to do blahblah... I've tried talking to her but it's just thrown back at me that i don't understand how stressful it is for her? She don't live with me so whats stressful about it for her she is the one who walked out and decided she hated her life not that it's much better now running round after her toyboy cleaning and cooking for him. Me and Cass then talked about my anger towards my brother I feel angry towards him cos i find doing normal day to day things so hard and he just sit's on his computer or sleeps and basically does nothing. He eats the stuff i buy myself also it really annoys me! Also said about how i feel bout not being able to go out clubbing and swimming and stuff I was invited out for a friends birthday but i can't go as i know i won't feel great and won't enjoy myself and it would just spoil it for the rest so don't wanna go. The only friend who really bothers with me is Charly she takes me to hospital when i need to go and is always there to talk to. If it weren't for her i prob wouldn't leave the house. My dad is amazing always doing stuff for me and looking after me and I feel bad cos he shouldn't have to me being 24 i should be able to take care of myself! He says he don't mind but i do lol After transplant i don't think it;s fair that he should have to look after me until i am stronger it's not fair!

after talking to cass i went for my last blood test and then x-ray and then home. I just went straight to bed when i got in as i was so tired still am now but can't sleep all evening .

Today has really made me think and has actually made me quite sad also I feel very deflated and very alone!

Wednesday, 13 August 2008

am i paranoid?

Well yesterday i went up hospital cos i hadn't been feeling well my best mate took me which is nice of her she's a star. They took blood and put me back on a weeks worth of iv's .

Today i got a phone call saying my potassium is low which is why i'm tired and that cos i have had so much gentamycin the past 3 months to stop taking it. but to carryon the other drug. my crp is down aswell and my white blood cells which means no infection. so why do i still feel really rough am i paranoid?

Monday, 11 August 2008

still not great!

Haven't written over the weekend as have been to tired to. I dunno what the hell is wrong with me but i don't feel right at all. I'm eating really well still but that's down to the megace. I am so tired all the time i have literally been sleeping all day and only getting up to eat and then going back to sleep. Today i tried tidying my room but i just ended up in tears cos i felt so exhausted that i couldn't do it. everthing is so hard to do at the moment even having to get dressed is such a effort i haven't bothered putting makeup on today as i just am to tired to. Rang my hospital up and they said to come up tomoz so that's good. It's annoying cos i only finished iv's 4 days ago so you would think i was feeling better .

On saturday i got my letter from Harefield about my lung transplant assessement so was hapy bout that got to wait a little while yet but least i have my appointment which is the 1st of october. I'M nervous but happy bout it. anyway i'm getting a headache now so am going to go and drink some juice and rest on the sofa bye bye x

Thursday, 7 August 2008

hospital entertainment!

haven't written for a couple of days as haven't had anything much to say. Yesterday my friend had a job interview so i went along with her well i waited in the car for her lol . Fingers crossed she get's the job as she deserves it :) .

Had hospital today as it is end of iv's hurray! My lung function is the same as last week. But my weight is up again to 44kg yay i'm so pleased i love megace lol. me and charly were a bit bored waiting around so decided to entertain ourselves with a bowl that we found in the room it made such a lovely hat......!not lol but we found it funny i got aught twice wearing it on my head i felt like a bit of a tit hahaha! but hey it made me laugh. nicked some sputum pots aswell lol well they were sitting right behind me and i always need to take a sample with me when i go hospital so they came in handy lol. when i got home i had something to eat and had to wait for a phone call at 4pm from o2 about me topping up with my card as it wouldn't let me stupid thing but it's all sorted now. after that i had a little nap am now just waiting for my pizza to cook as am a little hungry. just gonna chill tonight as am shattered bye bye mwah xxx

Monday, 4 August 2008


Today has been okay, I woke up and done my iv's at 9 then had breakfast and had a little nap I then woke up and checked my emails and had a cup of tea while i thought about what to do today. I decided to tidy up so i tidyed my room and got all my washing ready for tomoz didn't have the energy to do it after tidying my room. i tidyed the kitchen as well then had some lunch and chilled out watching the tudors on dvd good program.

I'm just now waiting for my dad to finish work and then when he takes my bro to work we are going to go asda as i need some more food i can't stop eating lol. then gonna have a chilled night.

Sunday, 3 August 2008

I feel like a zombie!

Sorry i didn't write yesterday was totally out of it. All of yesterday i pretty much slept i could barely stay awake I got up at 9 to do my iv's and have some breakfast I nearly fell asleep doing my meds. after my breakfast i fell back to sleep. and woke again about 1ish and had some lunch. I was supposed to go to a family bbq yesterday but i just felt so drained that i didn't i went to my mum's for abit but started getting sleepy so decided to come home again. I came home and just chilled watching some telly and then about 9ish i had a bath. I then came down and did my iv's and watched big brother. my brother came home from work and we watched hostel 2 the n i went to bed.

Today has pretty much been the same i've slept all day. I woke up at 9 to do my meds but turned my alarm off so fell back to sleep with out doing them which i was angry about when i woke up again at 11. i then had some breakfast and watched hollyoaks and then fell asleep again i actually am finding it so hard to stay awake it's awful. i woke up about half 1 cos the grand prix was on so went downstairs to watch it. I then had some chicken and rice and then had another nap. Iv'e not long woke up and i am still so tired and i'm hating it. i ache all over it's driving me nuts. I have so much i need to do aswell like tidy my room do my washing, clean the bathroom but just wanna sleep instead. i'm just putting it down to my iv's . anyway am gonna have a cup of tea and watch arsenal on telly and hopefully stay awake lol bye bye mwah xxx

Friday, 1 August 2008

rough day

Had a very very very bad evening last night me and my best mate and a disagreement that upset us both. Then me and my dad had a massive row then me and my mum had a row over the phone was not good. When i get upset and worked up it's very hard for me to control my emotions and anger. Me and my mate are ok now tho we sorted it. I sat in the garden for about half an hour then gave my dad a hug and apologised and then we had a little chat. I then spke to my mum and apologised to her to so all is good now. I hate fights!

Cos i had worked myself up so much last night i felt pretty tired and ill today so stayed in bed all day and just slept. My dog Dave came and snuggled upto me as he knew i was feeling abit off it's sweet how animals know when your not well. I eventually got up cos i wanted to go to my mum's so got up and got dressed. am now just chilling at my mum's and usng her comp lol.

I text 1 of the cf nurse's cass today as wanted to see what my liver blood test results were. But they hadn't come back yet so got to ring on monday. Hope it's all ok.
It really rained today which was nice i wanted to go stand in it but i'd prob end up getting ill if i did lol.

Got my uncle's 50th BBQ tomoz which should be nice hopefully it'll be nice weather and not raining bu also not to hot lol. anyway shall write again tomoz bye bye mwah x

Thursday, 31 July 2008


Had hospital today as it is my mid iv's so they wanted to see how i'm doing my lung function is up which is good. My weight is the same as last week again that's good. But one of my blood tests for my liver came back abit low so they did another test to check it today. They told me not to worry but that's easier said then done especially when you just don't need something else on your mind. Was asked about harefiled and if i had a letter yet but i haven't it's been a month now i'm so paranoid waiting lol.

After hospital I done abit of shopping got my food and munchies. Am really tired now tho have just done my iv's so think i may have a little nap before my dad finishes work. My hand hurts today cos obviously blood was taken again and it was my nice juicy vein. so it's a little bruised as it's been used 3 times this week lol it'll be all better for next week tho. My gent levels were fine so the hospital were pleased with that. Anyway i shall write tomoz bye bye mwah xx

Wednesday, 30 July 2008

Blood test number 2

Woke up about 8 this morning to do my iv's had only 1 lot left as was waiting for clinovia to deliver more. About quarter past 8 they turned up i was in the middle of doing my meds so my bro got them in for me. Have enough till the end of my course now. After my iv's i had a milkshake then went and got washed and dressed. Had to ring Ian my mum's fiancee at 9am to remind him too take me to docs. He picked me up at half 9 my appointment wasn't til 9.40am. Got to the docs and the receptionist that was there was the nice old lady who knows me she was like hello Joanne who are you seeing today. She booked me in and then i picked up my repeat prescription for some more creon and fortisip as i only have 4 left. I got called in to see Kim about 9.50am got in there she was hapy as there was my lovely juicey vein already and waiting again lol. Again i watched her stick the needle in really doesn't bother me or hurt at all. It took about 1 min and i was off out there.

After docs Ian asked me if i fancied a trip to asda i was like yeah why not nothing else i have to do. Got to asda's and just looked at mobile's and cd's he was nice and bought me some milkybar white moments there new milkybar things there lovely kinda like minstrels but obviously white chocolate.

He then dropped me home as he had to go sleep as he had worked that night. I felt a little tired so had a little nap. I woke up about 1ish and had some lunch made toast toppers had crisps and a tiny bottle of coke. did my blood sugars before aswell like i always do . I then chilled out for a little bit watched abit of Jeremy kyle god all that guy likes to do is shout at his guests and there all very chavvy! I then tried to tidy up well when i say tried i tidied the kitchen did the dishwasher and tidied the sides and cleaned the cooker. I then thought i'd have a go at cleaning the floors. How stupid was that i did half and was shattered after so decided to leave the rest.

At about half 3 Charly picked me up and we went to the bank but it was shut when we got there.
So i asked her if she minded taking me to boots to pop my prescriptions in. So off to boots we went. The guy at the pharmacy is nice he was apologizing for the last time my order was messed up but i know it wasn't his fault. He also said about if the pharmacy picked up my prescriptions instead of me having to do it. I thought it was a nice offer but if i do it it get's me out and about plus i always have someone to collect them for me if i need them to. After that we went and visited philip at vw he got us a nice cold drink mmm! We then drove around for abit and then charly dropped me home.

When i got in Dave wanted to play in his pool but the water was abit manky so my bro tipped it out and we refilled it for him. He loved it he kept growling when i put my feet in there tho lol. Got hospital tomoz as been on iv's nearly a week so going for a checkup. Anyways shall write tomoz bye bye mwah xx

Tuesday, 29 July 2008

IV's suck!

Ok they don't totally suck as they do make me better well eventually anyway. Today they have done nothing but make me feel so bloody ill. Decided to just sleep pretty much all day. my body obviously needed it when you sleep your body repairs it's self. Guess that's why iv's make you wanna sleep alot. well that's what i think anyway lol. Got another blood test for my gent levels tomoz . I won't have the same problem with the receptionist again as booked this one after mondays blood test.

I was gonna do the housework today but as i've felt rubbish i thought i'd just leave it my dad understands which is cool. I'm still managing to eat well though which is good although today i have only been having my fortisip drinks but it's better then nothing plus there so much easier to have then standing round cooking. It rained for about 5 mins today which was abit rubbish lol now it's all hot again :( I like the summer but have been really suffering this past few days it's felt like someone has been sitting on my chest not nice. my oxygen helped but i don't like using it for to long as i don't wanna become Dependant on it.
My brother told me yesterday that he has ordered me a wii fit as i have been trying to get one for ages so i should have it in 2 weeks yay. It''ll prob kill me lol.

I was thinking last night about if there is some way of getting these useless lungs to start working properly again. I thought about doing more excerisise like trying to run again but then i thought about how i get after climbing the stairs and how uncomfortable it is to try and breath so in away i'd be really stupid to try it.

well i'm gonna go and relax abit maybe attempt to cook something to eat shall write tomoz bye bye mwah xxx

Monday, 28 July 2008

Blood test number 1

Woke up at about 6 this morning it was to hot to sleep. I decided to just lay on my bed until i felt a little more awake then i went downstairs. I rang up the repeat prescription line to get some more creon and fortisip as i have nearly drank them all whoops lol!
I then had breakfast as i couldn't ring doctors till half 8 as that's when they open and when you can arrange an appoinment.

At about 8:35AM i rang the doctors but it was engaged. I constantly redialled for a good 10 mins then i finally got through. When i said to the receptionist could i please make a appointment for a blood test this morning she said all the slots had gone!!!
I said this is a very important blood test and it has to be done this morning to which she said if all the slots are gone there's nothing i can do.She then said weren;t you here on Friday? I said yes and she said why couldn't you of booked it then? To which i said because i didn't know i'd be on iv's and that i would need a blood test today. So i then told her to have a word with my GP she then put me on hold and came back saying yeah ok it's fine i've booked you in for 10Am.

My mum's fiancee Ian picked me up which was nice of him as he had worked that night so he was very tired. Got to the docs. It's not nice in there now as it has all been changed they have horrible hard plastic seats and everyone is sat really close together. Before there was nice comfy sofa's in there. Anyway about 10:05 i was called to see Kim the nurse. She worries when she normally takes blood from me cos it can sometimes be hard to find a good vein! But cos it's been so hot my vein's are popping out on my hands lol She was very surprised and had no trouble getting blood. i haven't even got a ark on me where the needle went in lol. Now with needles i used to have a HUGE phobie of them i used to cry,scream and faint when one came near me. Over the years it's totally dissappeared I don't even flinch now. But today for the first time ever i actually watched her stick the needle in my vein which is the one thing i could never do until now. I only have blood taken from my hand tho as i find it doesn't hurt and it's where all my good veins are.

After the docs i came to my mum's house. everyone get's worried when i'm on iv's so they prefer it if i'm not left alone. so Ian made me a cup of tea and we watched top gear although i'd already seen it last night lol. My mum got up about 1PM (she works nights) and Ian went to bed. me and my mum have just been chilling and chatting she was laughing at me cos i was trying to tempt her gerbils out of there hiding place but they wouldn't come. little buggers!

Did my iv's at 2pm my picc line is abit temperatmental at times only likes it if my arm is straight lol. I am a bit hungry now so my mum is just making me some cheese on toast mmmmm! my dad is picking me up at half 5 when he finishes work. I have missed my dog today tho he was crying whne i left this morning he hate's being alone (my bro is home but probably asleep still) anyways it's gonna hopefullly rain soon which should cool it down hope tonight will be cooler. i shall write tomoz bye bye mwahx xx