Sunday, 26 July 2009

week 20 july - 26th july 09

Hello everyone so i'm bad at updating this blog lol so thought i'll do it every week much easier that way of course unless something really annoys me and i need a rant.

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

so many emotions

Hiya sorrry again for not updating my blog for a while. The latest news is on the 6th of july i was officially listed on the transplant list. I was so happy and overwhelemed that i had done it i had finally got there after months of hard work and some of he worst months of my life with all the stress and worry that i'd not make it but i did and i'm so proud of myself for fianlly getting there. Yes it was long and very painful. I had my peg put in which hurt but was worth it looking at me now. and also all the dental work which was painful as well. But i would do it all again if i needed to cos it was my golden ticket to the transplant list and i know that i'll ge tthem new lungs at somepoint this year. it's a feeling i have and my mum feels the same. 2 postive things have also come from this actually 3
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

it's done

yay all of my dental work is done i go back in 6 months for routine checkups.
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

Really getting bad at this

Hello bloggers! yes it is i bad blogger lol i have been so bad at updating this lately so have quite a bit to tell.

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

the joys of iv's

So am now midway through my 2 week course. my stomach is not happy i have the runs but i am still eating loads lol. Had my second venflon put in yesterday as my other one leaked so i removed it myself. i have thrush in my mouth and stupid cold sores on my lips ouchies!!! but it's all worth it if i makes my lungs better from this flare up.

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

iv's time

So am back on iv's hospital went well everyone was pleased to see how well i had done with my weight they were shocked and couldn't believe it. i am dead on 9 stone now never been that much ever. I got angry and upset tho cos the physio kept goin on at me to excerisie saying now the weight is on i need to excersise i was like erm i would if i could breathe better i get exhausted just getting dressed or going to the toilet. she just kept going on and on and she always moaned when i didn't cough alot up and i told her i was coughing loads up since being on mucodyne and she said that's not right the amount i'm coughing up argh can't bloody win. Then i'm being told i'm the same as everyother cf patient and i said i beg to differ no 2 people are the same everyones body reacts differently to things which is true i mean i'm allergic to ceft and other cf's aren't but might be allergic to something i am not so that is my point no 2 people are the same. but she wouldn't shut up my mum was gonna say somthing but knew that i'd say something eventually which i did. I said to her look this is why me and the other physio fell out so lets just cut this conversation now before it gets into a argument. so she shut up!

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

Big brother

god why do they always put weirdos and tarts and fame hungry people in there does my nut in but hey gives me something to watch i suppose.

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