Sunday, 26 July 2009
Monday July 20th
So it was my 25th birthday and i had a lovely chilled day our new sofa arrived at half 9 in the morning and then me and my dad chilled out on that it's like sitting on a marshmallow lol. then about 12ish the sky man came to do our mutliroom. Then around half 1ish me and my dad went shopping for some clothes as a birthday present from him. he was encouraging me to spend loads but i was very good and didnt take the mick! Then we came home and my mum popped round to see me and arrange our plans for tuesday. I was told i could have what i wanted for dinner so i decided on a mcdonalds and some big macs lol. I didn't have cake as i don't like birthday cake.
Tuesday july 21st
I woke up about 8ish as my feed finished and checked my sugars they were 16 which is high for me so was bit worried. But i was also still tired so went back to sleep. i then woke up again about 11ish and had some breakfast and a cup of tea. my mum said she'd pick me up about 2ish to go shopping. so i just chilled an watched tv about half 12 i went and got washed and dressed. then bout quarter past 2 we went shopping. my mum bought me some more clothes and some gladaitor style sandals as i'd been after some for ages. i also bought a dress with my birthday money. luckily i got it in a size 12 as i'd not of got into a 10 lol. then i chilled out round my mum's.
wednesday 22nd july
Annual review day ergh! I woke up so hungry as was not allowed feed =( had to starve. got to hospital about 20 past 9 and was put in sideroom. Then my 2 fave cf nurses came in i have a laugh with them. and one of them broke the news that she's leaving =( i was bit upset as i find it hard to trust nurses etc. Then i had my bloods taken nurse c said that my nice juicy vein looks fed up so she tried another with no luck. so i said to her to try the fed up vein and it bled like a trooper lol. so after bloods it was time for the awful glucose drink but cos f my peg it ment it could go in through there yay! So 10 mins after that i started feeling sick lol the physio came and saw me and we went over my posture etc. i hunch forward a little. Then the dietician came and saw me wasn't much she could say lol as my weight was stable at 58.2kgs. I was asked to do the big lung function tests but said can i do them in the second part of my review which is in august and they said yeah no probs plus i showed them harefields test results. After 12 i had my other bloods done and then i could eat oh my god that cheese roll i had was nice lol. then off to x-ray and then back to mum's.
thursday 23rd july.
didn't have alot to do today so asked my mum if i could go round hers again which i did. on the way there i said who fancies a pizza from asda i'm paying my mum said nah and then she was like ian you've gone past the turn into our estate. he laughed and went i want pizza lol. my mum laughed and said well if yu go back home i can get some money and grab some other bits from asda. When we were in asda some fat bird was starring at me and ian turned round and said would you like me to bluetooth you a pic of her! the woman soon turned away lol. i have noticed loads more people starring at me lately. anyway went back to my mum's and had some yummy pizza!
friday 24th july
i had planned to tidy my room do my washing and tidy the bathroom. That didn't go to plan after i had rung the hospital for my blood results. my blood glucose levels had come back high which ment i'm now over the borderline line! i was gutted as now there's talk of insulin i know it's not a big deal to some but everything i didn't want to happen is happening! i was told i don't have to change my diet just to keep checking sugars with food which i am. my crp though is 13 which is good. i did soom washing then went and had a sleep.
saturday 25th july
today i tidyed my room it was a pain in te bum lol but now my room is tidy yay! not really much else done today just chilled out and pigged out!
sunday 26th july
Today i have a afternoon of sports first f1 then motogp whoop! am just relaxing on the sofa at the mo but fancy some lunch so am gonna go make some in a min. hehe. anyway i shall update you on what happens this week. who knows what it will bring =)
Sunday, 12 July 2009
1. i am so much better with my medication and physio and feeds etc.
2. i've gained a huge amount of weight in a short space of time. and am maintaining it well.
3. i'm over my phobia of dentists lol and am now registered with a dentist :)
So i thought once i was listed all the stress would go away and that i could sit back and relax and juts wait for that call. How wrong was i? first few days of being listed i was a nightmare constantly on edge everytime my mobile rang i would jump. and get excited then deflate when i saw it was one of my parents lol. sounds harsh but i just want that call. Then the dreams oh my god i had dreams the first few nights that i was having my transplant. But now i'm alot calmer and relaxed and am just taking each day as it comes. I don't know when i'll get the call but i know from what my hospital said i'm a really good match for alot of people as i have the height the weight, the blood group and also i have a big chest which all helps. so they said i prob won't be waiting long but who knows. My bag is all packed so is my dad's and my mum's lol. my dad is on edge waiting for the call which makes me chuckle. I bout loads of new jogging bottms and cardigans that button up as from what people have said it's painful lifting your arms for a while. also got button up pj's.
I am scared of transplant but the only thing i'm really scared of is the tube still being down my throat when i wake up. as they don't remove it till there happy that your ok breathing on your own when awake which i understand but i know me being me i'm gonna be pulling on that thing when i wake up. and i'm abit nervous bout the chest drains and how many there will be it can vary from 2-6 i was told but we will see. just be nice to breathe properly again. I'm also going to write a letter for the donors family to say thank you. I know my dad is gonna be a right mess during the op as he was on edge when i was getting my peg put in lol bless him. they will be updated every now and then i have been told.
not much else to report. I set dave my dog up on facebook after seeing gemma's dog alfie had a account lol. and my mum has been off work the past week so spent a few days round hers hanging out which was nice she dyed my hair red but cos it was black it's not really gone very red it's kinda black with a red tint lol.
Thursday, 2 July 2009
i have been prescribed some toothpaste and told to buy an electric toothbrush. i'm so happy.
i was told to go home and rest but i went shopping instead haha needed some food. my mouth was fine didn't hurt at all. :)
so now just wait to be rang and informed that i'm listed and hen just wait for that special call. :)
Tuesday, 30 June 2009
I had my first dentist appointment on monday the 15th and she had a look at my teeth to see what needed to be done she said i need 5 teeth out and 3 fillings. she didn't do any work that first day as it was just a meeting to see what needed doing and when we can do it all. She did clean my teeth for me though which was nice and told me and showed me how to clean my teeth properly. I then booked 3 appointments which i got upset about as wanted it done asap.
But things are going better then i thought. Anyway i went back on the 22nd for my first treatment she filled 2 of my teeth and pulled 2 teeth out it was abit of a pain trying to get this 1 tooth out as it didn't wanna come lol the worse thing about having teeth out i find is the taste of the injection stuff lol ewwww! and of course after the treatments done your dribbling everywhere and have a lisp when you talk cos your mouth and tongue are numb lol.
Anyway after she'd fnished she called my mum and told her i'd done well which i had didn't flinch or complain at all :) and that i need to rest the whole day and not to rinse my mouth out till the following day and to give me pain killers for the pain. so got back to my mum's where her partner ian kepting saying what to everything i was saying when you could understand me perfectly well ok not 100% perfectly but my mum could lol. i fell asleep and then woke up complaing that my mouth hurt so was given some solphadeine which done the trick. anyway i had end of iv's meeting at hospital on thursday and was in alot of pain with my tooth still the one she took out at the back hadn't hurt once. so at hospital i was very quiet and said i was in pain with my mouth and one nurse said my face did look swollen. she wanted to take blood but i wasn't in the mood for her to train on me lol then the other nurse did it but cos my veins are so big and bouncy it kept moving and it actually really hurt so i asked her to remove it and not continue. also couldn't do lung function cos i was in so much pain pretty much a wasted trip!
on way home i text my mum and said surely i shouldn't be in this much pain still. so she rang the dentist and they said it sounds like dry socket can you bring her down asap. so i told my dad i needed to go dentist we had just got in from hospital and he was a bit annoyed cos he was tired and hungry. we got there and i had to wait 15 mins to be seen i was crying at this point cos thought my dad was in a mood with me and cos i was in pain. anyway when i was called in the dentist had a look at my tooth and said there was food debry in there and that it had become infected! so she said she will put a special filling the hole that will clean it she asked if i wantd to be numbed up for it i said no cos didn't no she'd actually be using anything sharp or poking it. well my mistake she started scrapping in the hole with a sharp thing and it hurt so much that my feet shook. and then she put the stuff in my god it tasted awful ergh! but within 10 mins the pain had gone it was fab! she also gave me some antibiotics for the infection aswell.
That night my mate text me about icheal jackson and that he had apparently he had died shock! i thought it was a joke but nope t was true. he also had a ticket for the concert. anyway at half 4 that morning i was vomitting my feed came up all of it! it burnt my nose and throat.
that morning when my mum came to pick me up and i was not feeling well at all.
we got to the dental surgery and i was sitting there and i said she's only doing a filling today this isn't going to be finished next thursday :( but when she got m in the room she said that cos of my upper tooth she could't do the filing so could she pull the 2 bottom teeth out i jumped at the chance of getting rid of 2 more teeth :) so 2 more gone got one more left to come out on thrusday and one more filling. it also turned out after speaking to my gp the pills for my infection were to strong so have had to cut the pills in half and have half twice a day.
also me and my dad had a little tiff and i ended up sitting in the kitchen he came out 10 miins later and we pretty much forgot about it all and were talking bout his work etc.
then the phone rang. and i answered it it was my grandad and he was like is that joanne i was like yeah he was like i don't like what you put on your facebook status and i have commented on it. i was like what? he said i put that's not facebook material to which i replied it's my profile i'll put what i want he said but everyone can see it i said so it's my profile. then he asked for my dad so i passed the phone to him. he was like what you said to upset Jo. and then i heard my dad saying it's her profile dad that's her place to vent. she can put what she wants. then my dad said well i'm getting pissed off with this i had my sister texting me the other night asking what drug jo was taking and is it legal and do i know about it. my dad was not amused. anyway my dad said bye and then i got upset thinking that i had caused a massive row between them my dad said not at all my dad was angry that he had rung to complain it's nothing to do with him.
anyway what i put was something about i'm always in the wrong in this house and my brother gets away with everything even tho he treats me like shit.
anyway they prob won't talk to me now my grandparents but there ya go not like they know me anyway
Friday, 19 June 2009
got dentist monday and am having some teeth out possibly 2 lol all i had done this monday just gone was my teeth assesed and cleaned which was cool i need 5 teeth removed and 2 fillings but main thing is that the teeth are taken out. i can be listed with needing fillings. got a new phone for my birthday which isn't till 20th july but my mum thought i deserved it early. only problem is she got me the wrong one that i wanted lol she wasn't happy with it anyway. she got a nokia n95 for her birthday and now wants to get me one lol so am getting another phone for my birthday now. lol bless her
Thursday, 11 June 2009
after about 20 mins she walked past my room again and i tell ya if looks could kill i would of fallen down dead lol but hey i don't care everyone else is pleased with me. also the physio said i am not looking after myself by not coming in to get iv's erm dur that's why i was there for i was the one who asked to come down to get iv's god!!!
i was back with my ex but today after seeing something on his facebook profile i said that it's over. This may sound so petty and stupid but it has really upset me. My ex best friend and i obviously don't talk and i hate her she said before xmas i didn't deserve new lungs and that using a wheelchair was just pure lazyness so i hit back with really horrible things to. But anyway a few weeks back it was her birthday and i found out that my bf/ex was going out that night so knowing that one of his mates was going out with my ex best mate i had a gut feeling that he was going aswell. Loan behold pictures turned up on his facebook profile of him out for her birthday so i said he should of told me and that i was not impressed as he knows how hurt i am cos of her comments he should be supportive of me. Anyway he said he never spoke to her or anything. Then i said ok promise me you'll never add her to facebook. He promised and then today i looked at his profile and he had added her i was gutted and feel so bloody stupid as everyone keeps telling me and it just don't sink in argh!!!!! stupid me. anyway am going to start getting my iv's mixed as gotta mix them myself for tonight and tomoz morning. bye bye everyone x
Monday, 8 June 2009
bit annoyed at the moment just some people saying bout tx and how scary it is and they don't now how they'd cope if it happened to them or it was there child going through it. I know people think it's scary but i look at it as a chance of another go at life again. I'm more scared of being how i am now the rest of my life. sorry to moan i haven't moaned for ages lol but just annoys me. maybe i'm just different and look at things differently. anyway not much to write again really me and my bro had a row about how messy i am. I shouted at him saying he hated caring for me. Bit childish of me but i was tired lol not good to mess with when tired lol. anyway he apologised and said he loves looking after me as i'm his baby sister lol bless. am going to hospital thursday probably for some iv's as it has been 2 months that i haven't had them which is a record for me lol. got dentist next monday. well am off cos my dad will be home soon so it's cup of tea time yay bye bye xx
Sunday, 7 June 2009
Saturday, 6 June 2009
not got much to say really went dentist monday she said he couldn't do the work as my oxygen is a problem and i'd need to see a hospital dentist so am seeing one on the 15th of june and me and my mum are pushing for the work to be done quickly might even be put out for it. as soon as the work is done i can be activated that same day. other then that i've just been relaxing and sleeping as been so tired think i have a infection coming on wll will try and update this more often bye bye for now
Thursday, 28 May 2009
Sunday, 24 May 2009
I got ym new car on friday i love it. my dad loves it aswell as obviously he has to drive it cos i can't drive yet. lol
got y new bed coming wednesday so that when i get out of harefield i can sleep in my room yay. I also spoilt a surprise that my dad had for me lol he bought me something that is also coming wednesday but he refused to say what it was. So me being me decided to try and guess i kept guessing wrong until i went in my room and looked around then looked at the telly on the floor and though hmmm maybe he's got a new one. So i then said you've got me a new tv haven't you his reply was how'd you know that. which gave it all away lmao. apparently it's red to match my theme of my room. i'll pst pics up when my bed is in. cos then it'll be finished properly. i can't wait :)
I'm all packed for harefield my mum came over yesterday and took my washing to do for me. and then brought it back today and helped me pack. I don't have to go in till the afternoon as it's a bank holiday so no tests will start till tuesday. my dad bought som scales ysterday as i haven't got any to weigh myself. I weighed myself today and i am now 54.9kgs i am so pleased never weighed this much in my life :) wohooo!
Monday, 18 May 2009
Sunday, 17 May 2009
my room is finally finished being painted and the red i picked is perfect for my Betty boop theme. also my new wardrobe is up and it's huge lol. The chest of drawers i wanted are to big to fit in my room so have ordered some new smaller ones. they will be here Wednesday. My dad is busy painting the downstairs hallway and upstairs hallway as we have new carpet being fitted Tuesday. My car number plate should be released tomoz so once that's done i can get a date ready to pick the car up yay. can't wait but will miss my red Betty :( I am getting nervous about harefield as it gets closer eeeeek! I'm still waiting for my new bed to arrive my dad is gonna ring them tomoz and find out if they can give us a date for it. Also not getting a stair lift now as our stairs are to awkward for one to go in. but I'll manage some how the exercise will do me good i guess lol. well everyone will try and update this better then i have been. am going for a cup of tea now and to watch deal or no deal lol
Friday, 8 May 2009
I bought some new tops yesterday lol some nice blue ones for summer woo! there baggy ones so they'll hide my fat pot belly hehe not that i'm ashamed of it just like to keep it covered over.
also ordered my new wardbrobe yesterday which will be here next thursday my dad is gonna start doing my room next week. bought some books aswell to keep me occupied. I watched twilight again last night love that film can't wait for new moon to come out in november! :D anyway must go and do my neb take care all x
Tuesday, 5 May 2009
My belly is huge aswell i look so pregnant lol i think i am over 50kgs now looking at myself. soon find out wedneday lol. well must dash as gotta go do some physio then start my feed.
Sunday, 3 May 2009
Thursday, 30 April 2009
Me and my dad popped out today to look at beds he had one that he really wanted to get me but wanted my approval first so i went and had a look. I loved the bed it is so comfy it's adjustable and all mattress foam. the lady said it comes with a massage unit aswell if i wanted and i looked at my dad and he said yeah she'll take it lol. i hate that he spends so much money on me. Bless him we are looking at wardrobes tomoz gonna get some mirrored door ones.
We also went and bought a new sofa as he really wanted to get one it's beautiful i didn't wanna get up out of it lol.
been having my usual breakfast of cake lol but asda ran out of victoria sponge cake so i got apple and cream sponge cake it's actually really nice though lol. I must rig the docs tomoz to make a phone consultation appointment as need some more drugs lol but can't be bothered to go up there and waste his and my time so gonna ring instead. Plus i can imagine the syrgery is gonna be full of people with cold and flu cos there gonna scared they have swine flu. anyway gonna go get ready to watch the inbetweeners hehe love it bye bye x
Monday, 27 April 2009
Wednesday, 22 April 2009
My dad was laughing at me earlier as i was sat on the sofa and somehow i had managed to wrap myself up in my oxygen tube hahaha it was funny i was stuck and couldn't work out what the hell i'd done to get myself so wrapped up. :P
I've been feeling very well since i started taking my doxycyclone full time now which is great but i am still struggling abit with tiredness so am going to start taking potassium tablets again as my potassium does like to drop alot stupid thing.
My dad bought me lot's of asda victoria sponges the other day so that i could freeze some as it has now become my thing to have for breakfast yes a whole vicotria sponge hahaha! mmmm cake!
I just can't get enough! oooooo!
I did have a little cry earlier though i'll admit i asked my brother for help moving my books and stuff so i didn't have to keep going back and forth. And he came down and shouted at me :( I cried after he had gone back upsatirs and then went on strike and stopped everything i was doing and had a nap. He then came down and woke me up and asked if i needed help now. I said no in a sulky voice and told him he had upset me for shouting and he apologised so then i made him hoover hahahaha!
I finished my first twilight book today it wa sooooo good i was so pulled into the story and am totally head over heels in love with the male charcter edward cullen lol sad i know but he is amazing. Am looking forward to curling up in a little bit on the sofa and starting the second book called new moon. So before i can get on with reading i must go and do some physio and nebs and take all my tablets. I really want some cake but must not have any now as i am going to start my feed at about half 10 so must have a empty tummy :P i love having my feeds cos i'm getting a right little porker now. I can't afford a load of new jeans so i have had to cut my old ones on the waist so that i can do them up hahaha but it's cool cos i wear long tops with jeans so no one would know so shhhhhh it's a secret ;) bye for now let's hope for some more lovely sunshine tomoz xx
Monday, 20 April 2009
Friday, 17 April 2009
Thursday was clinic eeek! I was very nervous but all went well my mum came along for support. My weight has gone up to 48.7kgs i am now 7 stone 10 haven't been that for years lol. lung function is also stable so no iv's again thank god if i need them i don't mind having them but if the docs think i'm doing ok not on them then cool. so all went well i got extra tubing for my concentrator as i couldn't move very far on it. but now with extra tubing i can go in the garden move about in the kitchen and even answer the front door on it it's great :) am so happy now.
I ordered the whole series of the twilight books for 35 quid on ebay brand new copies. they should be here soon. also ordered 2 of katie prices books as her frist one was really good.
I don't plan on doing much today as i'm so tired also worked out why i find it hard to sleep at night. It's because i haven't been having my fan on. since having it on i'm out like a light lol. also my dad bought a new tv the other day it's bloody massive and very nice i like it loads. :) anyway i'm off to surf the net some more bye bye xxx
Sunday, 12 April 2009
it's easter today and i'm bored bored. my mum popped over this morning to see me and my bro and she got me a little betty boop compact mirror and a notebook betty boop style of course. and she got me a lovely white chocolate egg. mmmmm i like white chocolate.
my dad got me a box of roses choccies and a box of milk tray. and also he bought me some baseball boots pink ones hehe! haven't got them yet though there one of the parcels i am waiting for. :)
god there is nothing on tv boredom is annoying might just have a little nap me thinks.
Thursday, 9 April 2009
My ex bf told me this morning he wants to wait for me till after my transplant cos he can't move on cos he compares every girl to me. So erm yeah whateva he prob won't but there ya go lol i know him to well. i know he cares in his own weird way for me but i just don't see him waiting around cos i don't even know how long it's gonna take lol. anyways it's that time again nebs and physio well not in that order lol x
Wednesday, 8 April 2009
Today has been another chilled day just relaxing and thinking about the future ahead of me and all the great things i'm going to do. i have my o2 off today as i am breathing really well without which is great but at some point that feeling will go again lol least it's giving my nose a nice rest poor thing is so sore from the nasel specks eeeek!
I was hoping my dvd would arrive today but it didn't so am hoping it comes tomoz. I must order my new jacket tomoz i'm treating myself as i am getting so fat lol i love it i looked in the mirror today and laughed cos i look like i have a tiny baby bump lol it was funny but amazing cos haven't been this fat or felt this good about myself for ages i hardly wear my baggy jogging bottoms when i go out anymore well saying that there no longer baggy on me lol there all tight hahaha! but i actually put on nice tops and nice trousers now whereas when i was really thin i wouldn't i'd hide under massive hoodies. but now i got something to flaunt lol. need to buy new bras tomoz aswell as the ladies are getting rather big also lol.
My dietician phoned me up today to check how things are going i said the feed s going well no problems at all doing it every night. I said i'm eating little and often instead of filling myself up to the point that i wanna burst which she said is a good idea. My mum and ian (her fiancee) are off work next week so i shall be spending sometime with them which will be nice me and my mum are going to go shopping might wait til then to get some new bras me thinks. And Ian is taking me clinic on thursday i'm excited cos i am wondering what my weight is now lol. anyway enough jabbering on from me lol oh by the way i have a new word that i keep calling my dog and cat giblet lol love it!
Monday, 6 April 2009
I have the sorest nose in the world today my o2 is really drying it out so everytime i blow my nose it's dry and hard ewwww! also getting nose bleeds.
Been reding the paper today it's full of stuff about Jade Goody and her funeral. Now don't get me wrong i feel so sorry for her and her family and her little boys. But i was actually rather offended about her being compared to princess diana. Diana was such an amazing lady who helped people across the world and stood up to the royals! Jade Goody was just someone from a tv show personally i couldn't stand her in big brother she done my head in. I would never wish what happened to her on anyone and again it's a shame she died at such a young age and left her 2 boys without a mother. And it is great that she has raised awareness for cervical cancer and to get tested. But she just doesn't compare to lady di simple as!
I upset my best mate yesterday i didn't mean to but i was so tired as hadn't slept much the night before. Her bf's 9 year old son said i hope you die to her she was upset obviously. But i said teel your bf about it apparently she did and he told his son to apologise. But she was still upset and said he talks to me like shit cos my bf does. I said why are you with him then? an she said cos she lov'es him. I then said but all you do is complain about him. i know sounds harsh but she does. anyway must go as it's time for a nice bath before i do physio and nebs!
Sunday, 5 April 2009
The past week all i have done is sleep as my new tablets seem to like knocking me out lol. But i think there working well. I haven't really done much to be honest as been feeling very tired so just been eating and sleeping.
Jenson Button won the grand prix again this weekend yay i was so pleased. although the race had to be stopped as the rain was so bad but still he won so i don't care lol. I found it hard to sleep last night think i have slept to much over the past week lol so am abit grumpy today. My chest is a bit tight today though but i put that down to lack of sleep my chest always plays up if i don't get a decent amount of sleep. Fingers crossed i get a decent amount tonight lol.
Thursday, 2 April 2009
my betty pic above isn't she fab! i want another one aswell of her in a pink dress think my mum is going to get it for my birthday. 25 this year bloody hell how amazing is that. My mum wanted to get me a iphone but i don't like them there to big and heavy so betty will do me instead lol.
anyway it's physio and nebs time so must go and get on with that to keep my lungies well :) bye bye
Monday, 30 March 2009
Saturday, 28 March 2009
My final thought is for lewis off the CF forum he passed away after catching pneumonia. :( Breath easy lewis RIP! x
Tuesday, 24 March 2009
have a really bad pain in my lungs been there for a few days now it's round the back on the right and left sides done physio doesn't help done hypertonic saline again doesn't help! nothing shifts it argh! am on my o2 pretty much constantly now cos feel like i can't breath without it might just be whateva is causing my pain is causing this to. i'm also trying to tidy my room up it's such a nigtmare it's taken me days to do it as i have to do it bit by bit. got the oxygen people coming round tomoz as they have given me the wrong concentrator i can't use this one around the hose which is rubbish. and thursday got a home visit from the nurses. anyway i'm gonna go have a lydown before gettiing started on my room again byeeeeeeeeeeee!
Friday, 20 March 2009
The dietitian came in and we talked about my feed and decided that i should have the full 1000m ls which i was happy with. and that i can also try having calogen after meals for a few extra calories. so all was good and my weight is at 47.7kgs so i am pleased. as soon as it hits 49 area they'll get on to harefield and harefield have said they'll arrange an appointment yay! new lungs i sense could be this year :)
still getting this shoulder pain though grrrrr! no one knows what it is it's a mystery! was given oramorph for it but so far all this stuff has done is make me wanna go to sleep lol. Hospital was pleased that i am using o2 overnight as well. and also that i have portables. but they were concerned about me sleeping downstairs on the sofa they said i should sleep in my bed but i explained that the stairs are to much to keep doing and that i am better downstairs cos that way i only have to do them twice a day. but hopefully soon I'll have a stairs lift can't wait lol and my dad is going to be doing my room up anyway i want it red with Betty Boop pictures and Betty boop duvet lol. Dave is going to the vets next week for his nails to be cut and for his jabs I'm so nervous for him lol i think they'll say his obese but they can get stuffed cos he is a perfectly healthy happy dog. and he isn't over fed. also my dad said he will take me out and that we can go for a walk round the lake with Dave i can hold Dave's lead whilst in the wheelchair i laughed and said knowing Dave when he can't be bothered to walk anymore he'll jump on my lap hahahaha! will have to take some pics of this adventure. I got all upset last night cos more feed stuff had been delivered and there are boxes everywhere full of feed stuff and all my o2 cylinders about and i just cried cos the house is a mess cos of all my stuff. My dad said it's annoying more then anything not the right thing to say to make me feel better lol but i don't think he knew what to say. But he then said he is gonna sort it all out next week when he is off work. maybe even get some wall cabinets for it all. anyway i am gonna go sit on my bum an do nothing lol bye bye xxx
Sunday, 15 March 2009
Friday, 13 March 2009
My weight has gone from 44.8kgs to 46.4kgs and now today it is at 47.7kgs i didn't believe it and i don't think the cf nurse did either we went to get another set of scales but they didn't work so we have just taken it that that's what it is. and anyway the scales are all calibrated so they have to be accurate. I am in total shock i never saw me getting here 10days ago if i am honest i thought i was slipping away i was so weak my feed wasn't going through due to me feeling sick and i had stopped eating cos of my chest. But now after being in i now have a crp below 2 hasn't been that for ages. but here i am everyone even mentions how fatter i am looking. oh god i can't stop smiling. and i'm going home today so i have to be very strict with myself and keep up the eating. the feed i know now will be no problem as my tummy tolerates the perative really well even had 800mls last night biggest feed so far :) anyway gotta go finish packing xxx
Monday, 9 March 2009
anyway my lovelys i'm off to cough up some gunk wohooo! lol bye bye xx
Saturday, 28 February 2009
Thursday, 26 February 2009
we met new years eve 2005/06 in a night club he was chatting to my mate trying to set his mate up with her and i went over thinking he was bugging her lol and did my your in my seat bit lol (he was) anyway he got up and i sat down then he started talking to me asking if i would get my mate to chat to his mate i said well get your mate to come over then. So he did they chatted and then i started chatting to him he asked me to get up and dance but it was drum and bass music which ain't my cup of tea lol. so i said nah my feet hurt so he danced and i just laughed he danced so badly anyway i stood up and started chatting to him and commented on his rings he had on he took one off and let me try it on and this is the sad part i put it on my wedding finger and said o look now were married lol i was drunk! anyway he found it funny lol i said i was keeping it and he was like nooo and i said yes mine and stuck it down my top now back in those days i was a tease and said if you want it come and get it he didn't though think he knew i'd of slapped him lol. i gave it back in the end then we sat down and chatted and i said aren't you going to ask for my number then. He was like what ya gonna let me have it i said yeah of course so we swapped numbers. Then my mate said she was going toilets so i went with her. on the way back someone grabbed my hand and it was the guy i had spoke to i just turned and smiled and carried on back to my seat. the music was still pants so me and my mate decided to leave and at the same time the guy and his mate had aswell. we were waiting for our lift home when my phone started ringing so i answered it and it was the guy he said you never gave me a kiss lol i said i never kiss when i first meet someone (lies lol) anyway he said come here and i said where are ya he was down the road and i said nah i'm going home now our lift had turned up. So home i went.
he text me til 5am that morning.
He text me again the next day and we decided to meet up so he joined me and my mates for a walk at the woods but i said it was to cold and we went and sat in his car and chatted and we had our first kiss. from then on we were a couple till i got cold feet 2 weeks later.
Then i got back with him a week after we split then i got cold feet again lol. Then he was like who was the guy running after you up the cinema valentines day. I was like oh that was my mate rob and if you looked properly there was a big group of us not just me and him.
anyway i didn't speak to him for a few months and then realised i had missed him loads so i text him and asked how he was. he didn't reply so thought he had chnaged his number.
the next day he replied saying is this Jo if it is please text back. So i did and we agreed to meet up that evening we went and sat by a lake and chatted i told him what had been going on aka my mum leaving etc. and he was nice about it i told him i'd missed him and he said the same then we had a nice cuddle. he seemed abit put out cos some rowers kept whislting at me cos i had my tiny denim shorts on well it was bloody hot lol. anyway we decided to try again.
we stayed together for a month this time then one night he picked me up from a night out and i was very very drunk lol and we had a argument yes i started it but he didn't exactly help.
he ignored me for 3 days after that when he did reply he said he had dropped his phone down the toilet???
we ended it again. for the next year and a half it was on and off he kept dumping me. and me being vulnerable i kept going back. anyway after this he turned and said i want us to live togther so me being me and madly in love with him i said yes. and i started looking for houses. Then one day i got a email saying he'd joined facebook and so i looked at his profile and it said he was in a relationship and there was a message from a girl on there saying smile babes xxxxxxxx. my heart just dropped!!! I text him and said tell me it's not true he said his brother had set it up and made a mistake and that he was still single. then i found out from my then best friend he was living with his brother and the girl who he said wasn't his gf but she was. i wanted to scream again betrayed.
after that i saw never to go back but i did when he finally split with the girl cos she apparently followed him round like a lost puppy dog lol. I decided to work my charm and see if i could still get my way with him and yes it worked. so again we have been on and off on and off. Then november he moved nearer to where i live and where my mum lives he is pretty much round the corner anyway. so we tried one last time and he refused to say he loved me so i said nah this is bullshit. he would just be a twat the next day. and he did exactly that.
Then monday just gone he said he wanted us to settle down together and i said i am so unsure why me and why now? why not before? and then i said could you be the man i need right now? someone who will be patient and understand that i am ill most of the time and can't do normal things. And that he can't just leave when everything is going wrong with my health. and that i need stabilty. He said he could be all these things but i don't think he can. so it's been on my mind the past few days me thinking should i shouldn't i. And today i made my decision I can't put myself through any of that again. If it never worked all those times before then it won't work now. I have broken that spell and don't feel the way i did towards him anymore. I've in a way grown up my health is my number priority right now. And men will always be there after my transplant. I just refuse to put myself through anymore hurt and pain and being let down. cos i know he will time and time again he will never change. But i have. So sorry no can do!
Anyway other then that not much to report my mum dyed my hair yesterday and today just been relaxing my cold is clearing now just need to get as much gunk of my chest as i can bought loads of vitamins today. not doing a feed tonight think the ensure stuff makes me feel sick. maybe i have a intolerance to it. will speak to my dietician. I think i'm struggling with my weight again cos all the pressure has been put back on my shoulders which isn't good cos it's constantly on my mind argh!!!! my mum has the hump cos i'm not doing a feed but i am full up so doing a feed is just going to make me wanna feel sick.
Wednesday, 25 February 2009
My mum is not happy that I'm lowering my feed but as i said to her right now a big feed is doing more harm then good i am feeling sick from the amount and therefore not eating anything which is very very very bad. So instead of giving up all together which last night i was seriously considering but then decided no i shall try small feeds i mean one carton has 400 calories in it so that's better then nothing really i'd say. maybe if it goes well i'll have 3 small feeds a day then that way that's what...........1200 calories plus whateva i eat on top of that so again better then not having any feeds. My dad is happy for me to try this. I think my mum is just worried cos she really wants me on the tx list bless her i want it to but can't rush the weight on. Just need to relax and take each day as it comes. :) at least the hard part is down and the peg is in. and now that it is pain free wohooo even better lol. Just been told not to play with it or i'll get it infected yes i like to play with it lol your supposed to rotate it once a day but me being well me lol i like to do it twice which i've been told not to do or i'll make it sore i like the sensation of it going round hahaha. yesterday when i rotated it ian my mum's fiancee played dead or alive you spin me right round it was hilarious lol.
well my lovely mummy bout me some perfect 10 hair dye yesterday as her work were selling it off for a pound a box result so she got me 2 boxes she's gonna do one for me sometime this week :) going down the tip later as it's away of getting out the house lol anyway gonna chat to my mummy and have a cup of tea :) xx
Monday, 23 February 2009
I have decided to change and be a new me Yes that's right a new me!!!
It won't be easy and i know i'm going to keep having good and bad days but i just need to try and deal with it all in a better way then i have done in the past.
I'm not the person i used to be the happy go lucky girl that had no cares in the world like i was a good 3 years a go and i always apologised to myself for that and then last night i thought why do i apologise for it? I shouldn't i have changed that's life that's what happens you never stay the same forever! so yes it hit me last night i have chnaged i am still me but different to the me before. My health and family come first in my life now and that's something i have always put second i know they say put your self first but mine was always in selfish ways not in the good ways it should of been so as of today i shall put family and health first. :) and i will look back at my past and smile and laugh at the stupid and pretty amazing things i did. But i now look to my future and what that holds who knows I strongly believe it holds some new lungs lol and so does my mummy!
But i promise to all those i love and care about that i am changing and i am becoming stronger and more determined to survive and not let CF beat me. It won't win and it won't make me a nasty person that's hard to live with which it started to do lol :)
anyway feeds are being a bit blah at the moment finding them hard but just had a thought. If i do big feeds everyother night and then the night i don't do big feeds i do a small one so that at least that way i'm still getting something. instead of making myself feel sick blergh!
Still suffering with my cold and now my poor dad appears to have a tummy bug eeek! bless him he is so sweet he is trying to keep away from me i did explain that if i am gonna get it i'll get it cos we live in the same house but hopefully should be going to my mum's tomoz might help me not catch it. bless him he's all tucked up in bed now with the dog and cat nursing him lol. well Dave won't nurse him he will just annoy him by trying to play with a toy.
done the funnist thing to my mum on facebook today she hates the man from the safe style adverts the buy one get one free so i put a pic up and tagged her in it of him haahahaha! think i mght be disowned eeek! anyway my lovelys i am off to get some lemsip mmm!
Saturday, 21 February 2009
on a good note i had a big feed last nght had 800mls and it went fine also had lunch and some dinner so eating pretty ok. anyway i must go laydown and sulk some more as these lungs just are annoying also keep getting that sholuder pain again argh! so am not having a great time poo!
Friday, 20 February 2009
Thursday, 19 February 2009
My lf is down a tiny bit and so is my weight i got a bit upset but was told not to worry as the peg is going to take time. Plus this cold isn't helping. they cleaned my peg (piglet) and then tunred it i did't feel anything. but can now have a nice deep bath yay. anyways i am going to finish my lemsip off and hopefully it will help shift this stupid cold xx
Friday, 13 February 2009
It would of been toria's 24th birthday today hope whereever she is she is celebrating with her sexy shoes on hehe. It's very sad though as i know with all the snow we've had she would of had such a ball with edward tedward playing in it. miss you toria. x
I went watford today with my mum's bf as he needed to collect a new thing for his car. he went in pub with the guy and his missus i wanted to stay in the car as the place looked really posh and snobby ans guess what it was haha they weren't in the pub long hahaha! one of those places were you feel out of place apparently.
Then went asda to get some pizzas that they make fresh mmmm! and then got some hair dye wooo!
Piglet was a bit crusty when i woke up so gave it a good old clean. i like to clean it twice a day hehe. my feed last night didn't go so well as after just 2 hours i vomitted :( turns out it was cos i ate a big mac and apple 2 hours before feed was due whoops! so now am having big meal at lunch time and little meal at dinner. also ordered myself some more clothes lol well think i deserve it for being good and staying in hospital for a week without complaing about going home lol. :D
Wednesday, 11 February 2009
Tuesday, 10 February 2009
After my op i felt very crap as they had for some reason upped my oxygen to 10 litres Jesus my sats were at 98% and i had a awful headache they kept saying it was the anastetic but it has never affected me like that so knew it was the oxygen i asked them to turn it down and after a while my headache started to fade thank god flet like my head was going to explode! I went back to my room and my mum and dad were waiting i was so hungry as hadn't eaten all day and it was about 6pm so thought o great food but then was told i couldn't eat for another 6 hours! i was gutted.
I also saw alan rickman the actor when i was waiting for my op he was visting a relative.
anyway sorry for short blog but my mum is moaning as she wants to dry my hair lol
Saturday, 31 January 2009
Thursday, 29 January 2009
I have been very down the past few days as finding it all very hard to cope with one thing after another. it's to much to take at times. But must keep going. I think of toria at times like this as she'd be such a comfort to me she always knew what to say. Miss her loads. xx
Tuesday, 27 January 2009
I didn't want a picc line in as my arm is still very bruised from the last attempt so i have a venflon in my hand. Hopefully will have my peg date soon aswell as want to get it over and done with. I'm still getting my right shouder pain which really is upsetting me they keep telling me to take pain killers but it's not working. :( sorry i haven't written much am feeling very pants at the mo first few days of iv's are always rough it's alot for the body to take in. am gonna go drink some juice and watch some tv before my next lot of iv's at 1 bye for now xx
Saturday, 24 January 2009
My dad came down to see what was going on and i was in tears cos of what the hopsital would say and he was sweet and calmed me down saying it wasn't your fault and they'll just have to deal with that.
So next day which was wednesday i was dreading going back to hospital. my mum and her fiancee took me. We went to the treatment centre and i was popped into one of the siderooms. after about 10mins one of the nurses walked past and said Jo you didn't meaning i had pulled my tube out oh what a surprise so i just calmly explained what had happened. Then again and again people kept presuming i had pulled it out myself so at this point i was pretty down and frustrated. Then the disscusion of having it put in again came up and i said no i've tried it and i couldn't adjust so no it's not happening again. But everyone kept going on and on and on my mum kept saying if you don't your gonna die cos they won't give you a tarnsplant. Then her fiancee said have you lost the will to live cos it sure seems like it the way your going. Then one of the nurses said do you not want a transplant then? OH MY god just cos i said bloody no to this F-ing tube does not mean i wanna die or that i'm going to or that i don't want a transplant! I am alive and kicking and am going to remain that way for a bloody long time. At this point i was on the phone to my dad crying my eyes out about it all. He said if you don't want it it's your choice your the adult no one can force anything on you. Then my mum and her fiancee came back and i just went mental and lost it they were just going on and on saying it's such a small thing to have done but to me it was not smal it was scary and i found throwing it up very traumatic now that may sound stupid but it really was that bad for me as i was very against the ng anyway but gave it a go to please everyone not that it worked. So my mum and her fiancee went and got all my stuff out the car and dumped it in the room with me and i kept saying bye then. Again i rang my dad he was really angry and kept saying i'm gonna come get you but i told him not to. Then one of the nurses came in and said i was hardwork and that everything always had to be about me and that my mother was just caring about me. I then turned to her and said she doesn't know what the realtionship between me and my mum is like and then she started going off on one and pointing her finger in my face so i said i don't have to listen to this FUCK OFF! She then lft the room. I may have been out of order but i had just lost it and felt so out of control from everyone going on at me and saying the same thing over and over again i really just couldn't take anymore.
My fave nurse who i can acatually talk to came in and calmed me down and we had a chat and i brought up the peg thing it had already been mentioned but i was not in the right frame of mind to hear about it. So anyway we chatted and i said if it's done under a general i'l have it.
Le me explain how my mind works. If people go on and on and on at me about this and that then i swicth off and won't do it. But if people all back off and leave me to think things over myself then i am more likely to co-operate. which i did.
So after our chat the picc line lady came in ready to insert a new one as they wanted me to have some iv's she got all setup and my fave nurse stayed with me. the local was put in didn't flinch as it didn't really hurt then she started pushing the line in but it kept getting stuck and then it hurt when it hit the edge of the vain! ouch! Then i started feeling very light headed and burning up so the nurse had to go get a fan and some water. The piccline lady kept talking to me saying are you ok? are you going to throw up? Then she said i'm just going to inject some more local into your arm! I was like no wait not a good idea right now then she kept going on and on are you ok blah are you going to faint. You know when you feel faint you just want every one and everything to shut up so that you can calm yourself down and concenrate on staying conscious well i am like that anyway. it's like when you wanna be sick and someone rubs your back i fidn that makes it worse! I may just be weird though lol. so anyway i then said please i can't talk right now just give me a minute and shhhh! After about 2 mins i finally managed to get it to pass and i started to feel ok again. I apologised to the picc line lady and explained i find it more helpful if people don't talk to me when i get like that she understood which was cool. she then looked for the vain and it had gone whoops! so she said i don't think we should try again as your vains have all vanished we can try again tomoz. I dunno why i nearly passed out as i wasn't scared or nervous about having the line put in. But when i had my first piccline done i went exactly the same could it have been a reaction to the local? hmmm! So after that i was taken to the ward and put in a sideroom as i won't stay in without my own room and bathroom to scared of catching stuff on a ward. plus i was always told cf's get priority over the rooms. So i settled in and chilled out. i had a venflon put in my hand no probs not painful in my hands lol. then they hooked me up to a drip so i could have some fluids that had some potassium in it. i was like what if i need to go for a wee how am i going to move as it was plugged into the wall. they were like just call us and we'll disconnect it. I thought well that's abit annoying for them and me as they'd then have to come back and re attach me so i worked it all out myself in the end it's not hard really just push the hold button and clamp the hand thing off and unscrew and your free lol. so i thought this way was much better saves them having to keep running in and out and i know if there really busy it'd take them ages to come do it. The machine was a pain in the bum tho as it kept bleeping everytime i moved my hand lol it didn't like the hand being moved. I came to a compromise with one of the nurse's to try tobi through the neb instead of iv's they were happy with this but were worried as my brp had gone from 15-33 in a week so something was brewing in my lungs. I slept pretty well that night until the machine started alarming cos it had finshed so unhooked myself and off to sleep again lol. Thursday was full of confusion i was being told that i could have a peg under general but my lungs have to be better then i was told iv's were starting today and then i was told i would be in over the weekend i was like huh what?
So i rang the nurse up and she said no no friday your going home and iv's were holding off on and i'm gonna arrange your peg date i was oh cool can you please tell that to the docs lol. and then a nurse came in with some sedation for me to take she was like the picc line lady is here ready for you. I was like oh jesus not again. so back on the phone to my nurse i was like erm picc lady is here eeek! can i not just have venflons if i need iv's please i'm scared of the piccline lady lol. she said yeah no problem. so i was happy and the piccline lady said ok Jo no worries. so all was good. My mum posted a topic on the cf forum for me as it was costing a fortune to use my phone. It was about pegs and local and general sedation. most people had had theres done under local with some sedation and remembered nothing about it so i was kinda like oh ok hmmm interesting so i gave the nod for it to be done under local with sedation as everyone was concerened about a general being to risky. so should be getting it done soon. Also had to have some test done cos of my cortersol levels have dropped really low and it could be a cause of the megace. :(. i also found out how the other girl who was put on megace was doing it turns out it was making her hair fallout! so they took her off it she is due to have a peg to.
My dad came to see me he had just sat down when one of the cf nurses came in and said oh it's just aswell your dad is here you could be being let out today. i was like really? i was all prepared for another night lol even had my pj's out ready for bed hahaha! So the doc said i could leave so me and my dad packed my stuff and off i went YAY! i got home and relaxed it felt weird being home tho always does after hospital lol my cat wouldn't come near me.
I slept pretty well again that night.
Friday my dad had booked a few days off work to chillout with me. i rang the hospital up to get the results of the test that was to do with cortersol levels and they had come back out of the normal range so they might have to either re test monday or stop the megace. :( i'm sad about it as it really is helping me eat. but it maybe causing damage to my liver :( so unfair! i just slept most of yesterday. I watched the big brother final and was shocked at who won ULRIKA!!!! who the hell vted for her! i wanted verne to win :( he finished 4th.
Today again i have spent my time relaxing and taking it easy i really feel like the tobi is wokring for me as i am so dry and ardly coughing. oh the docs also looked into my shoulder pain and it's something to do with mucus plugging and killing cells in that area so the pain is not treatablt and i just have to keep taking strong painkillers great :( so wheelchair it is for when i go out anywhere then great! Got my grandparents coming over tomoz haven't seen them for a few years. back to hospital monday will update you all about it then. bye bye
Tuesday, 20 January 2009
We setoff for the hospital about 12ish and got there about quarter past 1. When i got there i had to go treatment centre as there wasn't a bed free on the ward. I thought they had one waiting for me! So it get's to half 2 and still nothing then the nurses come in to do my NG tube and i was like but what if there isn't a bed? and they said then we'll just pull it out. So i let the nurse do it and she tried 5 times and it just wasn't happening as i kept gagging and coughing it was awful. I said no i don't want it now. They left the room to give me a breather and went to ask one of the other cf nurses to have a go. I kept saying to my mum and ian i ain't having it now i can't handle anymore attempts. then the nurse came back asking if i would try putting it in myself i was like no way! so then the other nurse had a go and she got it down first time which is just aswell cos i said she could have 3 goes and if she don't get it then i ain't trying anymore. So it is in and i am hating it it feels so uncomfortable it's hurtin my throat and my nose argh!! Anyway they still hadn't got me a bed and by about half 3 they were saying there was a bed free on the infectious disease ward which is all side rooms i was like erm no i ain't going there. chst ward side room or i am out of here. I got really upset as i didn't think i'd be sitting around waiting for 5 hours i was tired and angry and just couldn't take much more. by 5 there was no bed free anywhere so was told to go home and come back tomoz morning i am going to have a new picc line put in as well. I have to admit i really shouted my head off today i was so angry about being messed about. I was nervous as it was about this ng tube and really didn't need all this hassle with it.
Obama was sworn in as americian president today big day as he is the first black president. I kinda thought someone would try and assacinate him or bush today as there was so many people in washington i know that sounds mean but bush ain't very popular. and there's bound to be racist out there annoyed that there is a black president. Hopefully he'll do great things for his country I am just gonna wait and see before making a opinion on anything. Shame we can't get a new PM here gordon brown is rubbish we need someone who actually cares about what te people want and need whereas i don't think he cares. anyway gonna try and eat something now as am feeling hungry prob won't update til am out of hospital which hopefully will be friday. so bye for now