Monday, 30 March 2009

give me the drugs!

Am going to my hospital tomoz as my chest is being poo again and my appetite has dropped so means something is brewing! anyway started mucdyne today so hope that thins all the crap in my lungs! also gonna push for spiriva and spetrin as apparently these work really well. will update all tomoz am going to go start my feed now am having 500mls at the moment cos more then that and i wanna be sick stupid tummy! grrr! night all

Saturday, 28 March 2009

anger management,shopping addictions & betty boop!

Haven't wrote my blog for a few days as been feeling up and down alot and just trying to keep my head together! anyway Thursday my fave cf nurse did a home visit and we had a chat about how i am feeling etc and i said i was ok just fed up of being stuck indoors and not being able to do much. she told me i have to push myself which is true. I need to get my mucus moving in my lungs as it is stopping me from doing much it's being very nuaghty and thick! grrr! also spent loads of money on things on thursday i bought a betty boop duvet set a nice red one and and nice black one then bought lot's of betty boop posters to frame as my room is gonna be done up for me and i want it red and with lot's of betty boop stuff in it i love betty boop as you can tell lol. Been after a massive figurine of betty boop for ages and finally found some on ebay they were 3ft tall but were 200 quid which is out of my price range lol then i saw one of her dressed in a devils outfit and it was 79 quid and 2ft high i was so excited i so wanted it my mum then got it for me and i am paying her back for it as it is perfect and so wat i wanted i love my mummy. Then i told my dad about it and he handed me the cash to pay my mum back i kept saying no but he was having none of it so i took it my parents are fab! My dad has been really helpful he sets my feed up at night for me and cooks my dinner for me all this will be repayed when i can finally do more when this awful stuff has thinned down am getting tablets to help with that. Jenson button is on pole for the first gp of the year i am so excited i have been a fan ever since he came into f1 in 2000 even met him in 2003 hehe! but even through his bad career times in the sport i always stayed a fan :) now is his time to finally shine and prove those horrible critics wrong :).

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

let's all live in bubbles!!!

I'm so fedup with the parent side of the cf forum! always people being so overprotective of there children catching psdeumonas when realy there gonna get it no matter what they do. shit happens!!! and i hate that some parents twist everything you say on there it's like SHUT UP!!!! god listen to the people who have grown up with it we are offering our opinion and your being rude and twisting our words! argh! i give up offering advice to them i really do stuff it! you ain't gona listen then i ain't gonna give any!

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

sunshine,lollipops and rainbows!

Only me! lol Haven't done my blog for a few days as just been tired. I still am tired today stupid Jo trying to do to much! I tidied my room well the best i could i throw out loads of clothes that I've never worn and never will and i put all my other clothes away. after that i was so tired and am suffering for it a few days on lol. Wednesday my brother took me over to the shops yes can you believe it he actually got off his bum and wheeled me over there lol. it was nice though as we don't really spend a lot of time together and that was a nice way of doing it. Wednesday night my chest was really bad though i struggled to breath even with my o2 on. I think it was all cos i was so tired and drained. My hospital has told me to get dressed everyday and do my makeup as this will probably make my moods a lot better. but it's actually becoming to much lol everyday is to much so today am having a duvet day. messy hair no makeup and my pj's lol. Had clinic yesterday. Knew they'd want a sputum sample so i got a cough swap thingy and did one of them myself. then my dad made me laugh and i coughed and bit of gunk came up so got him to pass me a sputum pot lol so they had both a cough swab and a sputum sample. i done my own lung function as well as i was bored waiting for the docs lol it was rubbish though but my lungs feel pretty pants at the moment again i am putting it down to tiredness.
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

I can't get my bum in them......

hahahaha as the title says i bought 3 pairs of jeans from Goerge at asda now let me explain a while back i bought a size 8 pair but they were huge and like clown trousers so i have guessed that the trousers come up really big so i bought 2 size 4 pairs and a size 6 anyway. Yesterday i Got into one pair of size 4's and they fitted okish but i couldn't do the bottom up hahaha so i shall sort that by adjusting the waist line i'm clever at things like this :P. and today i tried the other size 4 pair on and i couldn't get them over my bum hahahahaha i couldn't stop laughing. so i then popped my size 6's on and they are fab there tight but not to tight and there very long aswell which i lurve hehe. I've been eating really well since i got home and also had a 900ml feed last night and it went through no probs tuesday i shall be upping it to 1000mls eeek! lol anyway that's all for now gonna go have a hot bubble bath and then do physio and nebs xxx

Friday, 13 March 2009

i see it happening now!

I am so overwhelmed and have even shed a little tear which has given me a bit of panda eye lol.
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


So here I am in hospital boo! lol but i needed to come in. I came in last Tuesday 3rd of march 09.I was feeling really ill i had stopped eating and couldn't really move without getting that shoulder pain i get.So am now in room 13 eeek! and now have just realised i shall be in here on friday the 13th lol. anyway my crp was only 13 which i was shocked about as i felt so ill so thought it'd be higher but nope only 13 hmmm something about that number lol. My feeds are now going loads better had all my feed stuff changed am on some new stuff which my tummy seems to likand also been eating really well which is fab think the megace is working again. Got a nice goodie bag from Jess off the cf forum on thrusday which was lovely of her :) thanks again hun. Friday me and my fave nurse went into town to get me out and abouti got some magazines. my patientline tv sucks it kept messing up last week i was not impressed it went down for 13 hours at one point so rang up and complained got 13 hours creditted to my account :D. my venflon is still in and going well be a week tomoz yay hope it stays working. received a lovely gift from my aunt val today it's a cute teddy and a lovely box of chocolates. dunno what else to write reallyexcept i am looking forward to going home next week but am not in a rush as wanna make sure i'm doing good andam happy with everything. seeing the phscologist thrusday for a chat. As i have taken myself of my anti depressants hey weren't helping and i had become very aggressive and angry i hate getting like this and want a way of controlling it.
anyway my lovelys i'm off to cough up some gunk wohooo! lol bye bye xx