1 week in...

Had bit of a nightmare with needles poppin out my port and causing me pain. Though I was so stressed I would get ill rather than better but somehow my Lung function is up to 2.1 (69%) So something must be going right. Me x

Lung Function ..

Its down to 1.88 - 1.91 ish, thats what I think it said anyway, i forgot to ask.
So it has gone down quite a bit.
Want to work really hard to get it back up, but can't do sit ups etc cos my port needle will pop out, it''s already come out once and it reli hurts when it does it. Will go for a nice long walk with mum later that should help! and just do some good physio's.
Managed to have my Tobi bloods taken from my port...so chuffed. bet i'l need them out my arm Monday as am not that lucky!
Hope everyone is well
x

Drama on The Motorway

So Monday...Time for Hospital and IV's...went up in Mums car, with MuM, All seemed to be going well, we were chatting away, Then the car started making the oddest noise. I was like ''OH MY GOD mum get to the hard shoulder'' Then the car stopped working she couldn't change gears or anything, slowed down and got on to the motorway but then it kept rolling very slowly and the brakes weren't working. I pulled the hand brake up and mum turned the key off but the car kept running. Mum had noticed in her mirror smoke, the smoke started to poor out the exhaust, thick and black and ended up filling 4 whole lanes of motorway- was so scared it was going to cause a crash and our car looked like it was about to blow. Two C.I.D officers had luckily passed and seen and pulled over to help us, as we were quite nervous wrecks and had no idea what motorway we were on. These men phoned the fire brigade...We ended up with the C.I.D officers, 2 fire engines, traffic officers and the AA man who had to tow mums car and us the whole way back home, so a whole day out and never even got to Hospital. So was post poned till today.

Started IV's today ( a day late) and my port bled back. I have that fear of needles and my port hasn't bled back in years, then in the last month it has bled back straight away twice, so lets hope this is what the future holds but we will see. I reckon the push ups I have been doing has helped!

Thanks for reading.

IV's on Monday

Has been about 5 months since I had my IV's, in that time I have been my best ever but in the last three weeks or so I have felt my worst:( For the very fist time I am desperate for these IV's and I keep worrying myself, what if they dont help? I haven't had a lung function done for about a month now, I'm reckoning we are going to see a nose dive. I cant even seem to complete a set of crunches, sit ups and little push ups now without being absolutely knackered and chest pain! I'm only going in as a daycase this time, this is new! Its because they dont have any side rooms, then I have to go back up Tuesday for Tobi Levels...O the joys!!! I'm planning on exercising (back to the sit ups and walks and stuff) once on Iv's, as the last month I have been pretty poor at doing them, but I have had so much going on: Moving house, new jobs e.t.c. I haven't had a full nights sleep in ages because I always wake coughing so so much, i've become like adicted to halls because there the only thing that stop it!
Anyway having the IV's and pushing the exercise is all in good cause, not only to be well but I am going to Florida, America in 5 weeks and 2 and a half days!!!!! So excited. With my boyfriend, mum, dad and lovely little sisters. This is why I have got to get better, and this is why i'm so worried what if the Iv's dont have a good enough effect! I reli need to get motivated, as it's hard when your feeling crappy and extremely tired!

I will update soon on what I find out my lung function is and how the Iv's go!
Hope everyone is well
Mogzi x

Lots of things...

Work - job cuts
As everyone knows there are job cuts and worries going on at the moment. My contract ends at the end of September and it was looking very unlikely that my manager could take me back on. Everyone has been worryin about losing their jobs. I got a new job, but haven't heard anything much from them, except for 'struggling to get funding!'. Great....
Then the other day I had to do a presentation about youth clubs/ work to some local managers including my managers manager. After my managers manager told me he has some hours that he needs covering! This is brill news because i need the 6 hours at least to go to uni and I need to be earning at least what I am earning now to be able to afford to live! I also have an interview for another youth work job on Tues,so wish me luck.....
Health
Health is okay at the mo, had a niggling cough for like 3 weeks now tho and antibiotics didn't help. Been put back on cipro for 2 weeks. Going in for planned Iv's on the 20th September...this is because of health and because want to be well for holiday. I've been doing sit ups, crunches and small push ups (and lots of all of them) at least 5-7 times a week for the last 3 months. I belive this is how my lung function is staying up, so wont stop doing them, dont know if i'm toning the stomach tho, which was the initial plan so that I can look alright in a bakini on holiday and not pregnant (which im not). I hope I can carry on doing the sit ups etc..when on Iv's but have a feeling it might keep knocking my port out, which is annoying because I think that will help my lung function go right up.
Holiday
8 Weeks Monday and me, my boyfriend, mum, dad and sisters are off on a holiday of a lifetime.....America, Orlando, Florida!! So excited, done it before and its been amazing each time, this time it's going to be out of this world!

Back to happy

Wow so i had a few days of feeling emotional, tired and drained.
As i had mentioned before hadn't had any antibiotics for three months:D Well i decided to start myself on some now, started on Wednesday. This is because my cough was just getting worse, eventhough my lung function was staying at 2.2 ish. They made me sick wed and Thur but keeping them down now and starting to feel better already!!

Yesterday the firemen had an event to go to where they show the kids the engine and support the local village. Me and the other firefighters girlfriends walked down to meet them, mission of a walk (to me anyway). My legs were feeling it today and last night but i wasn't too coughy or breathless, yay. Then when the men had done there stuff we all went to the pub where a live band was playing and had a couple of drinks. Then we went back to my boyfriends brothers (also firefighter) and we all had domino's pizza's. After all this me and marc walked home at 10ish. They live about half a mile from us. So in all we did about 3 miles walking, which doesnt sound much but i only usually walk about a mile. Feel really glad about it today and want to do it more.

Its summer holidays:D My working hours have been cut right down and get to see more of my little sisters, family and my boyfriend. I think this week we are planning on toy story wed at cinema and bedgebury for a bike ride wed! Then again my new job might suddenly ask me to work more. Then me and marc are camping at the local car show sat night with my parents, local band in evening again and custom cars in the day!

Hope everyone is well!
Take care
ME xxx

Emotions grrr

I hate those days where for some reason you find anything you possibly can, to cry about. I always end up feeling stupid after cos all the things are pathetic and just because i am crying about one thing i seem to add all the little things that are worrying me to make it worse and i end up in a big mess. I then try and put together why i am crying and it's something completely different to what it started out as. Poor Marc gets it all, and he does the best possible job at cheering me up. I also take things out on him when i am stressed. I am messy and un organised which is unfair on him too:( Gonna try and change, but he says he loves me as i am hahaha, dont know how.

My LF was 2.25 at my last hosp, Thurs just gone. Good again but im starting to feel crappy so think antibiotics are needed, stupid cough! I really wanna wait till after next weekend, we will see, see if i can handle havin this cough that long!

Anyway my parents party a couple of weekends ago was brill. I got quite drunk with a few mates. Me and my bestest mate are a crack up drunk. She was crying cos the band stopped playing and we head banged to like 3 songs in a row which resulted in the worst neck ache for the next 3 days. My lil sis was soo drunk she puked everywhere. My sisters friend (girl) was hitting on a guy, who is a homosexual so he was not really diggin it. My mums best friend went home at 1am (when it finised) and danced in her kitchen with her best mate till 5 am. So all in all a random night!

This is all, i just have to mention i love marc very much, as he is on a call atm, which he usually is when i write on here and i miss him very much xxx

Worth the effort:D

So like i said before i was going to try and exercise more and keep my lf up! It has worked!! Well, the exercise, weight gain and constantly having pulmozyne all together has made such an effect! My lf today was 2.26 (73%), which has gone down a little from last time but i haven't had antibiotics for 2 and a half months and have got a cough at the moment! Have decided to see if cough goes on it's own but if it hasn't gone by Next thurs (my next appointment) or my lung function has gone down then it will be time for some oral antibiotics!

It's nearly 10pm and i am starving, haven't eaten since breakfast (sausages, bacon, toms and mushrooms). Everytime i get home from work at 9pm(like tonight) my bf has my dinner waiting ready on the table, as he is FABULOUS. But tonight while i have been at work he has had a fire call..no idea what to. So neither of us have eaten and i dont know when he will get home, could be any minute or not for like four hours! This is the story of our life, never know when he will get called out so cant plan a thing, but it's fine cos I LOVE HIM!

My parents are having a party this weekend i cant wait, my bf, family, his family and my best friends will all be coming, couldn think of anything better. Am going to have a drink, or 2 or 3! Dont drink often but when i do, i go a bit too far! Have only drunk twice this year, the last time i was apparently hilarious, but i cant get too bad this time as marcs parents might change their views on me lol!


Anyway i am off to watch some tv and build a new website i am doing for my new buisness renting out 2 gorgeous holiday cottages.

Bye
x

Updates

Hi everyone, Hope your all keeping well.

Just thought i'd update my profile, rarely get on here due to working and also having no computer at the mo, but pc world are hopefully taking care of that!
It's been A month and 2 weeks since i finished Iv's, this is where i usually am starting to need some antibiotics to bump me back up, However, did my lung function Thursday just gone and it was 2.35 I am mega happy with this! Its my second best EVER!!! This is due to my boyfriend and mine new fitness plan (I think). We walk at least 4 times a week and we have been doing 60 sit ups, 30 push ups (not proper ones) and 60 crunches every day. Also i haven't missed a pulmozyne, where i used to rarely have it! Im so worried about getting an infection now. I want to step the exercise up, so getting a work out dvd, hope it does some more good.

The downside, was i had a glucose test. Not sure if i have mentioned my fear of needles before, but i am getting better. Anyway to get the blood for this blimming test i think she took like 5 stabs and now i have a lovely purple bruise to show for it! Anyway she dropped a bit onto the stick in the machine which gives you a reading and it was 16!! This was 2 hours after the glucose drink. Anyway apparently this is high and now she wants me to check it. However i cant prick my self with those silly little needles because of the fear, then i get so angry at myself cos there is such worse things people have to face. But its a real phobia and i am getting better. Its silly really...I had 2 painful fillings this week, wouldn have the needle to numb it, cos that would be like the worst thing ever! So anyway, gotta get these tests done somehow over the next few weeks. My mum and boyfriend try to help but i get myself in a rediculous state. Feel for them.

Back on a plus side of things, after iv's i was worrying about getting back into work but all is fine there:D I also had an interview a couple of weeks back and have landed myself another job:D Which is in the day time( the other job is evenings) so looking forward, yet very nervous about all this.

I watched 'Dying for breath' yesterday night when my boyfriend was out on a call. I have had it recorded on sky for ages but wasn't sure if i wanted to watch it. I find it hard to face the 'dying' side of cf. Especially as im doing ok at the mo and my little sis has it too. I do think about it alot, especially when i think about working and uni and how stressed i get as it is, i dont wanna make myself ill. I also worry about wanting to have a baby, which i really want to do, and how its all going to work. It was good to watch it in the end, eye opening, i think everyone who is on the waiting list or has had a transplant is amazing! I have an ambition to keep doing all this exercise and medication really well so that when a cure comes about (which it will) i will still be on top! Its a dream....some dreams come true:D I find it all very hard to understand...If anyone could explain gene therapy to me more id always appreciate it, cos i know its happening but i dont know how long they are experimenting with it and what they know about it so far, and how long they think till a cure!

Anyway, i have chatted on enough, hope none of what i write offends people, and if it's too boring sorry too! xxx

One More Day to go!

Iv's finish tomorrow! wahoooo!

Been on Iv's for two weeks tomorrow! Think they have benefitted me:D Hopefully this will keep me well for the summer now, that is the plan! I only stayed in hospital for two nights this time which was a bonus, though at the beginning i really thought it was the worst stay...i have a needle phobia and had to have 5 needles over that 48 hours! Luckily 4 of them were in my port which doesn't bother me so much, though the problem is where my port is SO tiny (as i had it put in when i was eight) the needle always pops out and when it does it stays half in half out and for some unknown reason sends shooting pains down my back and tingles into my arm as if the needle is hitting a nerve....this hurts ALOT! Luckily my mum stays in hospital with me, but i need to stop this as i'm nineteen and i don't think she's going to be happy still having to stay with me when im in like my 30's! 40's! and beyond! I get her to stay because im not happy with the care on the ward that i get and at the moment i'm in two minds over changing!

So it's back to normality, back to living with my boyfriend, back to work and back to not having to have meds at 6.30am, 1.30 and 9.30pm! I will miss seeing so much of my parents and spending time with my sisters so much (been messing around with the littlest one for hours everyday). However, I am looking forward to being back with my gorgeous man, i mean once you start living together, being apart is torture and when your on IV's and all emotional it's even harder!!! And he couldn't stay at my parents with me often as he is a retained firefighter and has to be on call constantly! And my parents house is twenty minutes away from ours.
I'm a little nervous about going back to work, it's been so long, going to feel wierd getting back into the routine but at the same time, i need to work as i was getting rather bored not doing anything important and i need the money!! Saying that i have actually got four days of next week off as annual leave! So it's swimming teaching tomorrow night, youth club Tuesday and then off again till the following wednesday, then really got to get back into it all!

My boyfriend and I are trying to plan to do alot more exercise now to keep me more fit and for himself! It's alot easier now it's summer. My plan is to start with the exercise plan tomorrow, do at least half hour of something...walking, trampolining, jogging on spot, gym, swim e.t.c. Im going to record it and track my weight and lung function...this regime will probably last all of what? two weeks max!

Thanks for reading:D

First time blogger:D

I never really thought of doing a blog, i often write in a diary at home, that's where i let any feelings and memories out. Then i was just browsing the cystic fibrosis site (I spend alot of time there when im on iv's) and i saw quite alot of the writers there keep a blog and i read a few and wow really rather inspiring! Bare with me though as to be honest i have no idea what im doing.

A little intoduction, i'm 19 with cystic fibrosis! I have a fab family, boyfriend and friends. I have a mum, dad and two little sisters, one 15 without cf and the other 7 with cf. (I also have a 7 year old cousin with cf). Wow aren't we a healthy bunch lol! But we are all doing well. I don't see my cousin much though as she lives a good few hours away! I live with my boyfriend, he is the best, we have been together over a year and a half now and he looks after me very well and makes me very happy:D The weather seems to have a big affect on my health and my moods, so while the sun is shining so am i:)

Im not disclosing my name on here, purely because im a youth worker and i just worry if any of the young people look me up i don't want them knowing my business! Anyway yeah so i'm doing my NVQ 2 in youth work at the moment and i am loving it, hoping to do it at uni next year! The only struggle i am having is working five evenings a week can be quite tiring and sessions are right at the time i'd like to be doing physio and machines and stuff, but we're getting round it!

My health at the moment is pretty good, on IV's but thats just for a boost and my mid IV lung function was 2.2 which is good for me....wish i could tell you what that means in percentage but i asked my team and they didn't no. But it's good so thats all i need to know! And the main thing is im feeling well, been on trampoline everyday for the last week and for walks with the family dog! (living at parents while on iv's as dont trust myself to do them without my mum yet and have had wheeey tooo many alleric reactions where i stop breathing and swell up like a big ballooon to chance things!).

Well i will stop writing now otherwise you'll be bored of me before i even get started.
Take care everyone:D