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 :)