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

Sunday, 27 July 2008

a hot day

Today has been so hot it was unbearable. it's slowly getting a bit cooler now tho thank god.
Had a very chilled day today didn't really feel like doing much still feeling abit off from the iv's but it's not as bad as yesterday which is good. watched my Dog play in his pool again today bless him but had to come in as have been told not to stay in the sun to long cos of being on iv's (you can burnt alot easier)

had a nap this afternoon as was very tired. Unfortunately some little kids woke me up by screaming in there garden. Got docs tomoz morning gotta have a gentamyin level done then will spend the day at my mum's as my parents don't like leaving me alone for the first few days of iv's (i've occasionally had funny turns) Be nice to spend some time with my mum though i miss her loads.

I had another bad nights sleep again but it'll get better in a few days just my body adjusting to the iv's . My cat came in room at half 5 this morning and was giving me cuddles he's so sweet when he does that lol apart from he nipped my cheek apparently it's a sign of affection. well gonna get a cold drink and relax i shall wirte tomoz bye bye mwah xx

Saturday, 26 July 2008

i hate iv's

Had the worst night ever last night. I didn't sleep well at all not cos it was hot but just the fact i kept waking up every hour. Unfortunately the iv's have that affect on me at first. To matter how tired i am i won't sleep. I also felt like vomitting which didn't help and had a bad headache. I had to get up at 9 to do my iv's after that i had soem breakfast then went back to bed. about half 9 clinovia delivered my meds. I got my brother to get them in for me which he did. I slept most of the day as was exhausted and just didn't feel up to do anything.

I decided cos i felt so sick i would just drink my fortisip shakes to make it easier on my tummy.
It worked and didn't throw up at all. I got out of bed about 3 and had a cold bath as i was baking hot. After my bath i had another nap. I got up about quater past 5 and did abit of tidying up then watched some telly and then i went to my mum's for dinner. It was her bf Ian's turn to cook tonight so he ordered pizza lol. I felt really hungry so i decided i'd try and have some i manged 5 slices in the end lol. well gonna relax now as am watching spiderman 3 will write tomoz bye bye mwah xx

Friday, 25 July 2008

Iv's again!!!!

I woke up at half 5 this morning as just couldn't sleep. I heard my cat meowing in the hallway so opened my door and let him in. I justed layed on my bed cuddling him which was sweet he was purring away lol. Then he rolled off the bed which mad me giggle bless him.

I had a doctors appointment at half 8 this morning so went to that. I told my gp that my chest had been feeling really tight and that i was really weezy the last few days and if i could possibly have a stronger inhaler if there is one that is. There aren;t so he told me to use my spacer and have 10 puffs which is the dose you would have through a nebuliser. He also listened to my chest and said it sounds like there's infection there. He offered me oral antibiotics but i just said they don't touch it. He said i could do with some iv's in that case. So after doctors i rang hospital to see if they could see me. They said they can see me about half 1.

I got to the hospital about half 1 my mate took me. And saw one of the cf nurses there she's lovely. she toook some blood which i was slightly nervous about as she's nevertaken it from me before but all i can say is i will deffo be getting her to do it again there isn't even a mark there where the needle went in lol.
The doc came and saw me and said he is going to put me on aztronim and gentamycin for 2 weeks. I know i need it and the bug has been caught early But it's getting really annoying now i had my last lot of iv's 3 weeks ago grrr! stupid poopey lungs!!! But it has to be done. My weight has gone up again which is great. anyways i am shattered and need to just chill out shall write tomoz bye bye mwah xx

Thursday, 24 July 2008

Thinking bout the future

Had another pretty boring day today didn't do much again lol there's not really alot to do that doesn't involve money :( Anyway Got up bout half 9 had a really rubbish nights sleep as it was to hot and my lovely lungs decided they wanted to play up and make me cough alot grrr! So had breakfast and bathed and dressed then just relaxed in the garden playing fetch with my dog Dave.
Then went out about 2ish with my mate Charly we went back to hers and she checked her emails before we grabbed some lunch. We then popped to my mum's to drop off her avon stuff (oh yeah i got my avon stuff today to :D) and had a cuppa then Charly dropped me off back at mine.

I got in and as usual my brother hadn't tidied up like I'd asked him to so wasn't a happy Jo. He then did it when he realized the time lol after that we went in the garden and filled little Daves pool up as he was really hot. He got all excited and was running round in the pool it's very fun to watch lol. He's like a child instead of a dog.

My dad got home from work and i asked him if we could go Asda as i was running low on munchies aka sandwiches and jammy dodger bars lol so he said no probs and off we went.
We parked in the disabled bit which is fab cos it's right near the entrance and exit to asda so it means not much walking so that's good. So got all my lovely food i needed.

Had a chat with my dad when we got back as i have been thinking alot about if/after my lung transplant should i go back to work or not? I said i want to but i'm scared as it's been so long since i've worked. My dad said he'd be happier if i didn't go back. But i dunno i'd feel like a lazy cow although i do now although i shouldn't cos i can't work for a genuine reason . It's just scary. I know it's probably a long way off but i can't help thinking about the future it's a natural normal thing i guess. anyway maybe i'll mention it to my doc tomoz as seeing him anyway.
Need to get some more of my fortisip milkshakes as i drink them to quickly cos there so yummy! Makes a change me finding a supplement i like lol I liked scandishakes but there annoying cos you have to make them which isn't easy when your tired and feeling rubbish.
I have noticed that i'm coughing more and my chest is alot tighter recently and also my mucus has changed darker and am getting tired alot more. Dunno if it's the weather my asthma (Yes it's great ain't it it's bad enough having Cf let alone having asthma on top of it grrr!) anyway my ventolin inhaler doesn't work that well so gonna see if i can get something stronger. anyways gonna go dye my hair now will write tomoz bye bye mwah xx

Wednesday, 23 July 2008

Feeling hot hot hot!

Today i got up about 11 it was so hot. Had some breakfast and then went back to bed lol Was just feeling in a can't be bothered mood today.
I finally rolled out of bed about 1pm and decided to get dressed so i did.

I text my mate to see what she was upto and she was bored so we decided to go out for some lunch.
Had a yummy mcdonalds and a cute little squirrel was sat on the bin near the car watching us. We then went and vistied my dad at his work as thought he'd like that which he did lol .We then went back to her's so she could get changed as she was hot then went to get some milk for my house and then icked her mum up from the train station. We then popped to phil's for a quick chat and then they dropped me home so kind of a boring day today lol anyway write tomoz bye bye mwah xx

Tuesday, 22 July 2008

very pleased with my self

Today i woke up about 8 got up and put some washing on and had some breakfast.
i then felt tired so went back to sleep for about a hour and a half.
i then woke up and popped my washing in the dryer then had a bath and put my face on.

I text my mate Charly to see what she was upto she was tidying her room and we had decided we'd do something when she's finished. So anyway i got my washing out the dryer and folded it all up neatly. Normally i find it hard to do washing cos it's so much faffing about and it tires me out but today i did it and felt very pleased with myself. I also tidyed up the house but obviously didn't hoover cos that's just over doing it lol.

My mate Charly came and picked me up and we decided to grab some lunch from Asda lol (she's bored of it But i lurve there sandwiches ) mmmm!
we then popped back to hers and ate it whilst watching big brother. My predictions for nomintaions are that mohammed and darnell will be up and possibly Rex but i hope not cos he is fit :P

Popped to my mum's for a cuppa. Am still here chilling and buggin my mum lol temped to weigh myself to as i love my mum's scales lol anyways will write tomoz bye bye mwah xxx

Monday, 21 July 2008


Had a nice day today woke up about half 10 although took me about 15 mins to actually get up and move and that was only cos i was dying for a wee lol. Got up had a cup of tea and one of my fortisip shakes it was a strawberry 1 tho as the silly pharmacy had not put my order in on Friday so they gave me 2 strawberry one that they had i like banana. anyway so had my normal 1 of those normally have some fruit with it but had run out lol. Then had a bath and got dressed put my face on and sorted my hair as it looked like i had been dragged through a bush lmao!

My mate chazza then picked me up and we went to asda to grab a sandwich and i needed a few bits like jammy dodger cereal bars and some fruit lol and also some new dressings for my picc line as forgot to get some last week at hospital (silly forgetful Jo). So left asda it's also good now cos i have my disabled badge so can park closer and it's less walking which is fab saves some energy.
We then went to Bow Brickhill woods to a place called sandy lane it was known for it's boy racers, Dogging and people being killed there lol it''s only scary in the dark. In the day it's very pleasant and lot's of people about walking there dogs. There was a cctv camera somewhere there apparently we were looking for it but couldn't see it just a wire going through the trees lol. I think it was just to scare people off at night from going there for some nookie hahaha!
So we sat there and had our sandwich and jammy dodger cereal bar mmmmm! i'm addicted to them bought the last 2 boxes from asda muhahaaha!

we then were trying to think of things to do and decided to go sit somewhere as it was such a nice hot sunny day so we decided to go to Dunstable downs which i didn't think would be to busy how wrong was i? Lol it was pretty busy with people flying there kites and kids running round forgot it was school holidays argh!!! plus was a bit chilly up there but forgot we were on a hill so it would be windy. So we decided to drive back.

Am now just chilling waiting for my father to come home from work done the housework. think i might have mcdonalds for dinner tonight am to tired to cook and really fancy a cheeseburger and apple pie mmm! god i love my megace tablets lol anyway bye bye til tomoz mwah xx

Sunday, 20 July 2008

24 today!

Turned the wonderful age of 24 today. It wasn't a bad day to be honest was nice and chilled. Got lot's of presents Got a brand new arsenal t-shirt from my dad with Fabregas on the back. Got a fab new handbag from my mum she had hid lot's of little presents in it lol Got some Playboy earrings,makeup set, lip gloss set, body stuff, knickers, socks and a jewellry box. Got aliadin on dvd from my step- dad as it's my fave disney film. And my bro is gonna try and get me a wii fit as i really want 1 lol.

My chest has also been feeling pretty good today which is cool hopefully it'll stay good for a while.
anyway gonna have something to eat and chill bye bye mwah xx

Saturday, 19 July 2008

another boring day

Not alot to write about really. Just been chilling mainly dreading tomoz don't wanna turn 24 argh!!! Got abit worried bout my picc line last night was changing the dressings and noticed a lump where it goes into my vein. I decided to push on the lump just to see if it hurt It didn't but aload of puss came out EWWWW! it's not painful or anything but will just keep checking it everyday to make sure it doesn't happen again.

Wanna do something but it's just deciding what and seeing if i have the energy for it. Might just go back to sleep. Really want 1 of my milkshakes but gotta wait for my mum to collect them from the pharmacy. anyway that's all i can think of to write about bye bye mwah x

Friday, 18 July 2008


Today has been pretty boring nothing really happening. I slept till about 11 (my body obviously needed a good rest) and have just been chilling since then. My chest isn't feeling to great today feeling very tight and got an annoying cough. Done some physio to clear the stuff from the top which helped a little but now think the bottom stuff is coming up to DOH!!! also had some oxygen to see if that made it a bit easier to breath which it did but i don't like to have it on to long as my nose starts to hurt after a while lol.

Have to say actually just not feeling with it today. Received 4 birthday cards in the post today which i opened 2 days early Naughty me but just not feeling like celebrating my birthday this year i'm at the point of hating birthdays it's like the older i get the iller i get. 24 is my lucky number so maybe just maybe turning 24 will be lucky for me bloody hope so bout time i had some good luck in life lol .

Might go lay around in bed for abit or try and do some more physio to get the rest of the crap from my lungs up. God i hate Cf pain the arse! can't even remember what it feels like to be able to breath properly.

anyway way much more to really write about today cos i'm being boring lol (i'm not really i just don't have the energy to do anything) will write tomoz bye bye mwah xx

Thursday, 17 July 2008

clinic today

Had clinic today, Was very worried that docs wouldn't be pleased or that something else would go wrong with my lungs or weight. But all was good my weight was up i've gained 2 pounds in 2 weeks and my lung function was slightly down but otherwise stable. Blood sugars were good also which was 1 of my other worries. all in all they were pleased. The drive home was funny as me and miss Charly were singing along to some chick songs lol i have a beautiful singing voice.....Not!

Had to go asda aswell as i was out of chicken and bacon sandwiches with mayo. I am addicted to them and jammy dodger cereal bars it's so bad i crave them so it's also annoying when i run out lol. But am stocked up for a few days now.

Now just plan on chilling for the rest of the day. At my mum's for a little bit but can see myself nodding off as she watches such rubbish on the telly lol!

1 more thing about clinic is it weird that i like blood being taken? lol was disspaointted that none was taken today. oh well i can look forward to annual review which will involve alot of blood tests anyway will write tomoz bye bye mwah! x

Wednesday, 16 July 2008

pig out!

Well today has been a pretty boring 1 not really done much. Had such a bad nights sleep last night so was feeling bit grouchy this morning but am better after a afternoon nap. Also got woekn by my neighbour hammering at 8am! ARGH! i mainly just relaxed and pigged out was going to do the housework but my brother decided to do it instead which is pretty good of him seeing as i've done it all week so far obviously he does a more decent job then me cos he can hoover and mop the floors whereas i unfortunately can't at this time But that will change in time :)

Had doctors this afternoon which my best mate was nice and took me 2 i was kinda nervous as it was a doctor i hadn't seen before cos my regular doctor was on leave . The doctor was a nightmare he was asking me what i take all these certain medications for. I then said i get alot of chet infections and he was like why's that? I said cos i have cystic Fibrosis no offence ment but do the doctors not read patients notes before they see them? anyway he was a bit shocked by it but gave me all the stuff i needed :)
will go back next week and see my normal doctor. Also have clinic tomoz which i'm a little nervous about hopefully i've gained alot of weight to keep them happy although i look fatter well i think so anyway my hip bones have started to dissappear again. And my clothes are getting tighter again. i love gaining weight always makes me feel good it's all thanks to wonderful megace that i take that makes me eat like a horse hehe. Things are going well for my dad to he started his new job on monday at mr clutch which is motor industry which is what he did for years until he quit and worked for tesco's who treat there staff like POO! but hey he's back to what he knows and loves and he's happy which makes me feel very proud and happy for him :)

Anyway think it's time for a nice cup of tea and chill kinda full up from my mcdonalds hehe i had cheeseburger, 6 chicken nuggets, chips, chocolate shake and a apple pie may not sounds much but it's a ood amount for me anyway will write again tomoz let peeps know how my wonderful day at clinic went bye for now mwah! x

Tuesday, 15 July 2008

I'm a Blogger

So This is my first post on my new blog so bear with me not totally sure what to put lol.
Well hi there I'm Jo 23 nearly 24 in a few days (I'm thrilled) anyway. I suffer with Cystic fibrosis it's not nice and it's a massive pain in the bum! stops me doing the normal things that people do. It never used to but the past year it has progressed so badly . Am going through the process of getting on the transplant list. It's unbelievably scary so many questions going through my head
what if they say no cos of my weight? (i'm very underweight)

what if they say my lungs aren't to bad yet?

it's awful i'd feel very sad and upset if they say no.
Guess i'll find out soon when my appointment comes through. I'll be honest i've never been the best at doing my meds and physio but is anyone? I'm better at it now then i was a few years ago. Anyway I don't really get to do alot of things that i enjoy anymore it sucks! But i'm trying to get on with it it's hard exhausting emotionally and physically. I'd love to be able to take my little dog Dave for a walk, go clothes shopping in the big centre we have here but if i want to i have to use my wheelchair and i refuse to use it i still have my pride sounds silly but it's the way i am! Would love to go out dancing and having a good giggle and meeting new people But i can't cos my lungs and body just don't allow me to. Would love to have a bf aswell but am to scared to be with anyone as i feel it's unfair with me being ill all the time . Plus can't find a guy who excepts me for me! Don't get me wrong i do go out and have friends it's just hard when you feel you can't join in in certain things ya know i feel like i'm restricting them in away and i don't like it. Maybe if i get some new lungs i can enjoy myself again and do the things i want to do. anyways i've rambled enough as it is lol will try and update this blog everyday well it's not like i have anything better to do hehe mwah! xx