hello there

Hello everyone,

I have huge news that i wanted to share!!
My little cousin was born 5 and a half week early on the 9th of April at half three in the afternoon! He is called Alfie Lee Brown and weighed in at 5llb 3oz
He is doing superbly at the moment and i am so very proud of him and my Uncle LeeLee & Auntie Claire.
I have been asked to be his godmother and i feel very privileged! He's going to get spoilt rotten off me and everyone else i'm sure.. but me the most! ;)

Babies seem to be everywhere at the moment! Everyone is having babies, expecting babies or has had babies recently. Crazy! It gets me all sad and happy and jealous all rolled up into one!
I know i won't get a little baba of my own and it's a little bit sad. It just means i get to spoil them rotten and become the favourite person in the world without being peevish and shouting. Keep them while they're being cute and give them back at the end of the day ;) Like i said he is doing brill now and is a little chubby cherub! He visited me here in costa del pearce on Wednesday night, which was lovely of him!


Shameless plug for those of you who are still yet to sponsor my best friend Chelsey Thackeray who is running the 10k Manchester marathon on the 20th of May for the CF Trust! Please sponsor as much or as little as possible. You can sponsor online by going to http://www.justgiving.com/Chelsey-Thackeray


Alternatively, you guys can also sponsor her by texting: CHEL77 & the amount you'd like to donate (£1,2,3,4,5,10). To: 70070 Thank you all in advance and a huge thank you to those of you who have sponsored already.. it means the world to me and DOES make a huge difference.


I suppose it is about time i got back into doing these here blogs? I just don't feel like i have much to tell you all. Back when i did these religiously, i was in school and had things going on and people around me that i could get inspiration from.. these days i'm in what feels like a tedious bubble. A never-ending circle of the same things day in, day out. Same old, same old. I'm hope this isn't me sounding miserable, please don't take it that way! I'm just reflecting and thought i'd share this reflection with you.


My lung functions are good at the moment, really good actually. My weight is finally in the middle of the 'healthy' range in the BMI chart and it's sticking there. I'm happy with how my weight is and that is so lovely to feel that. I still hate my chicken legs and scrawny arms but i worked hard to put over 10kg on over the past year. Having the PEG tube fitted was definatly the big break i needed. Since then i have gone from 47kg to a healthy 59kg-60kg. BRILLIANT!!


I'm still not being referred over to the transplant team so that's always a plus! At the moment i seem to be going 5-7 week at home and then i need to come in for a 2-3 week course of IV's. That seems to be my 'norm' for the time being. I'm really keeping my fingers crossed that once we're out of the dreary winter/spring/MISERABLE season, with summer round the corner, all these virus's that seem to be attaching themselves to me shall evaporate and i can live my life a little hospital free for a while. Wishful thinking and all that! I've been brilliant with my meds & nebs and i even joined the gym and go there at least three times a week. I started swimming too and i'm loving every minute of that. I go to the gym with my oxygen and just sit on the bike with my headphones in, it's very cool. I feel proper posh ;)


Abit of sad news now... I lost another beautiful friend of mine this hospital admission and again it came as a shock. As silly as it sounds, even though i knew how poorly she was it was still a slap across the face and a little chip on my heart. I spoke to her on the Monday and she told me she was doing better and was on the mend, so to hear the news on the Wednesday was horrible. I've thought about it though and as sad as it is, i am happy in the full knowledge she was content, peaceful and pain free. It wasn't supposed to be like that though, she was supposed to get put on the transplant list at the end of this month and her chance was going to come along and everything would be perfect for her. Sometimes, i guess life decides that's not what it wants to happen and the chances and things that could have been, never are.


No more pain, No more struggle and No more fight. Breathe now beautiful girl. Laugh so hard your tummy hurts and don't even let that stop you! You have a wicked sense of humour that has had me in stitches on a number of occasions! You were beautiful in life and shall eternally be so as an angel now! <3 <3 <3


Going to leave it there....


love you all beautiful people xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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you are cute.

Yo Homies!

So I’m back and still not too happy with what is going on with the website so it’s going to be under reconstruction but still up and running so you’ll all have to bear with me.
I love the layout right now as it’s perfect for a work in progress!

So this is a little blog that I wanna write down after feeling so much negativity coming from the ladies as of late! Come on girls.. pull yourselves together!
So a few of my friends have been battling everyone’s enemy within themselves… there self-esteem!!
We all have it. It lies there and it digs away at us all from time to time on a daily basis, even you guys out there, you all know this feeling!
Truth is, as bangin’ as you all are, you’re never going to see what others see. You look in the mirror and you’ll never be exstatic with what you see staring back.
Never fully satisfied with the reflection!
Nothing I say is going to really change this but I am wanting to do this blog anyway for a certain someone out there who I feel needs a little boost.
It goes out to all of us really who just need some extra sugar in our tea today, so to say ;)

You are so very beautiful in every way imaginable.. you’re smile brightens everyone’s day whom has the pleasure of seeing it. You’re absolutely stunning and the thing that changes that into something beautiful, is that you don’t even realise it do you?
You make everything seem like it is going to be okay. As if you’re in this world that is full of good with no evil.
I mean you have your moments ;) ..... but don’t we all?
You seem to crave to lose those pounds that don’t matter to anyone because nobody else sees them.
You can’t ever make yourself happy with what you see, ever! Fighting a losing battle with that one and in the meantime you’re bringing yourself crashing down.
A few things I have picked up on and they’re not healthy for you. You need to stop that don’t you?
I understand wanting to stay healthy and toned but there is no ‘FAT’ that needs losing! These love handles you speak of? They’re your hip bones, they’re supposed to be there! :)
Those boobies you love so dearly will soon dwindle down if you keep hitting the gym as hard as you have been doing as of late!
You are absolutely perfect to the people who matter.
Beautiful girl.. you need to look in the mirror and instead of seeing all things that need ‘improving’
you need to start seeing things that are special and are bangin’ ;)

Wear something that you LOVE and just wear some sprinkle of confidence!

YOU ARE PERRRRRFECT TO ME! Remember that!! <3



you are cute.
love & peace dudes….

Byeeeeeeeeeeeeeeeeee <3

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LAST BLOG EVERRRRR... of 2011

hey

so christmas was beautiful and lovely even if i was feeling a little poopier than i would have liked but HEY.. it wouldn't be christmas if i was well and feeling great :')
i was very spoiled yet again, got tons of cute little bits of chelsey & arran, we did shoe boxes for each other and filled them with cute things that were significant to us. the thought that was put into them was amazing.
my little car got spoilt off my mama & papa and she is now fully decked out fairy style ;D
she shall also be getting a hands free kit installed at some point in the new year.
i also got very spoilt indeed of my mama & papa.. i got tickets to go see phantom of the opera next year... can't express how excited i am, i really can't. i love phantom of the opera and LOVE musicals. i saw chicago in 2010 with my papa in the west end and it was amazing. chicago has always been my favourite but i feel like phantom of the opera is going to be very special indeed.
i got tons of jimjams & which is brilliant for me as i practically live in them. i quite possibly have more pyjama's and onesie's than i do clothes. i got a few new clothes, new perfume, new make-up & hair things, new pamper stuff and money! spent christmas late morning with my nana and my dad's side of the family and then had a lovely christmas dinner at home (courtesy of mama) with my mum, dad, beth and roxie. had a christmas late afternoon with arran and then spent christmas evening with my mum's side of the family at my grandma's. PERFECT & TRADITIONAL.. for me & i have a crackin' photo of me and my grandad on christmas night and he is dressed in my mum's moo-cow onesie :')
might just pop that little belter' up at the end of this post if you're lucky!

i haven't been too brill as you probably gathered earlier on in the post. i'm never well on christmas.. EVER! i haven't been too bad, however, i think perseverance, stubbornness & optimism have pulled me through the brunt of it! i had my clinic last wednesday (day after my previous post) and it went well. lung functions were up and my weight was good :) i was feeling a little viral but was told to continue with the orals as i'd only had a couple of days on them and to see how i got on, i was given the very unexpected all clear and an appointment in an even more unexpected 4 week. anyway, i carried on and left. the day after i felt horrid and was coughing tons of gunk up! determined that it was the orals working and getting stuff on the move and out! i stepped up my physio and even resorted to my mum doing the old paediatric percussion (patting) technique for a few days inbetween. things settled as my orals obviously made impact and i started to improve. i knew i had lost weight but had stopped my feeds due to excessive mucus and sputum in the mornings making me heave and gag, i knew it'd be a waste of time and unbelievably unpleasant for me to have to throw it all back up each morning during physio so i just left it out until it settled. i missed a few days but i am back on it now as my chest is better.. it's just not great though. i still have a week's worth of orals left so hoping they'll budge things down even more. usually i'm on my peach, rolling over needing IV's when my chest goes bad but i seem to be defeating this all by myself with the help of extra physio and orals. hopefully i'll start to improve some more as i seem to have base lined at a point that isn't my usual. i'm not getting worse but still not any better, we shall see what the final week of orals bring anyway :)

i hope you all had a brilliant christmas with families and friends and loved ones <3 i had a little moment on christmas eve where i remembered those who didn't make it to christmas this year and i felt really privileged and lucky to have my family, my roxie, my arran and my chels <3 <3 <3 <3

this year like every other year has soon flown by, i feel like they go faster and faster each year.. which is silly because they quite clearly don't :') not really.
2011 has been a good year i guess, bad thing & good things.
I WISH YOU ALL A VERY HAPPY NEW YEAR AND HOPE 2012 IS A GOOD ONE FOR US ALL... <3
enjoy NYE and be safe!!! :)

take care, soph xoxo

here are some photos that sum up my 2011 as best as i could :') .........



GRAND NATIONAL 2011:



TAKE THAT CONCERT:



ROSE OFF MARK OWEN (take that concert) :



MY 18TH BIRTHDAY:



FIRST CAR (L PLATES IS MINE AND IS NAMED VAL & TALLULAH) :



MY FIRST TATTOO:



FIRST GIRLY WEEKEND TO WALES:



MEETING MUSE AT LEEDS FESTIVAL:



ADELE - 21 TOUR



MY NEW CAR (BLACK MINI IS MINE <3 ... IT'S NAME'S MAVIS & THE CORSA IS ARRAN'S NAMED VOLDAMORT)



ME & MY GRANDAD ON CHRISTMAS DAY (as promised)

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merry christmas everyone!

Hey,

i have clinic tomorrow (Wednesday 20.12.2011) but wanted to give a quick update, spread some christmas cheer and give everyone a wave before i go.
i'm also very privileged to be playing 'santas little helper' tomorrow on ward 85 at the children’s ward. we held a huge charity event earlier on in the year and we have spread the money out between 4 things.
• One was the 'Cystic Fibrosis Trust' - A charity which uses the funds raised to be put to research for CF
• Two was to the 'Starlight Children Foundation' - a charity that grants wishes for children with life threatening illnesses.
• Three was to Thomas - a local charity for a lovely young boy named Thomas Lees
• And finally, we decided to take £500 of the money we raised and buy loads of toys and DVDs for the children on ward 85 which is the ward i used to go on in the Royal Manchester Children’s Hospital.

Cystic Fibrosis patients spend allot of time in hospital and it's not just for a few days and a couple of nights, it can be up to 2-3 weeks and sometimes even longer. this christmas we wanted to put a smile on their faces for those of them who won't be making it home for christmas this year.
we are taking those presents tomorrow before my clinic appointment so i am SOOO excited it's unreal. can't wait to say hi to my old team and nurses and to be the barer of gifts for all the children on ward 85. here is a piccie of all the presents in the shopping trolley...







well this year is coming to a close very quickly :)
however, first of all..
"It's the most wonderful time of the year...."
ITS CHRISTMAS :) :) :) :) :)
.... well, nearly.
it's close enough. i think everyone says this every year, but i feel like this year has shot by. it really has.
going to have a quick re-cap of the year at some point before 2012 arrives. i like to do that you see, just so i can look back and remember certain things that each year brought.
there have been some really sad times and then some really good times this year... but first...

'the best way to spread christmas cheer is to sing it out loud for all to hear' - Buddy from 'Elf'





that is one of my favourite christmas songs :)
i feel like the oldies get forgotten about and replaced with the like of 'Slade' and 'Wizard'
Slade's, “Merry Christmas Everybody” is one of my favourites too but thought i'd share some love to the real christmas songs.
i hope you all have a wonderful christmas with your families or friends. i really do.
lastly, i'm going to leave you with a beautiful poem someone had posted on a friend of mine's wall. personally i'm not a religious person atall but i truly feel like this is beautiful. i think it is a perfect and lovely ending to this post.
Merry Christmas to you all reading this.... make it a good one.
Thanks for reading,
Soph xoxo


"My First Christmas in heaven.
I see the countless Christmas Trees around the world below,
with tiny lights, like heaven’s stars, reflecting on the snow.
The sight is so spectacular, please wipe away that tear,
for I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear,
but the sounds of music can’t compare with the Christmas choir up here.
I have no words to tell you, the joy their voices bring,
for it is beyond description, to hear the angels sing.
I know how much you miss me.
I see the pain inside your heart,
but I am not so far away.
We really aren’t apart.
So be happy for me dear ones.
You know I hold you dear,
and be glad I’m spending Christmas, with Jesus Christ this year.
I send you each a special gift, from my heavenly home above.
I send you each a memory of, my undying love.
After all “Love” is the gift, more precious than pure gold.
It was always most important in the stories Jesus told.
Please love and keep each other, as my Father said to do,
for I can’t count the blessing or love he has for each of you.
So, have a Merry Christmas and wipe away that tear.
Remember, I’m spending Christmas, with Jesus Christ this year."

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hi i'm sophie and i have CF

hello there :)

i haven't felt myself over the past couple of days.. just abit offish and not so happy, smiles, rainbows and sunshine. me being female isn't contributing to this rapid change of mood at this particular time of the month, may i add, but i just can't snap myself out of it.
it has gotten me thinking about so many things though. things i'd like to just get all out of my head and off my chest.. if that's okay?

i've decided i am going to chat to my doctors about transplant and the whole procedure. i just want to know the ins & outs fully so i don't feel like such a rabbit caught in headlights when the topic is eventually at the forefront of conversation with regards to my health.

for me personally, i don't feel like i am ready to have the ball rolling for assessment etc. i don't know whether that's one of these three things; i don't know if thats me being in denial or i don't know if that's me coping with how things are now and not really knowing any different than how life feels right now or i don't know if i am just right and it isn't my time to be going down that road yet.

the dreaded 'T' word has been mentioned before when i was transferred to the adults from paediatrics, however, after improving slightly.. it's been placed on the back burner as my wishes were to see how things go.
time has gone by and every so often my team leave little hints for me to think about it. they never really say it as such but i pick up on things they say every so often and maybe it's just me but i get the impression they're feeling it's not gonna be too far away this side street i need to head down for transplant assessment. i have always been told by each member of the team that they would never pressure me and that they're always there for if i need them. i feel like this is there way of telling me, i need to talk to them about it?
Obviously, i could seriously be barking up the wrong tree but i guess it's worth asking about?
my lung functions drift from high 20's-to mid 30's (percentage wise) and the highest they've been for the past year or two was (one random miracle) of 38%! that was a while ago now.. i'm slowly putting weight on, but even that is like a sea-saw depending on my health. going off quality of life, i know it could be a hell of a lot worse but i am talking about me so in comparison to how things were around two years ago, i start to notice just how big a decline things have took.
i no longer manage college so i am at home every day with my dog roxie, i come in hospital for IV's every 5-7 week for a 2-3 week course of strong antibiotics, i sleep on 8 litres of 28% oxygen every night, i use the NIV for airway clearance to keep my Co2 gas level from rising and when it does i then have to sleep on the NIV (a non-invasive ventilation system), i manage 5-10 minutes (depending on how my chest feels) on the exercise bike at level 1 using 8 litres of 28% oxygen, i have 2000 calories poured into me via a mic-key button gastronomy tube in my stomach over night to keep my weight stable, i often get viral's & infections that seem to batter my tired little airbags these days, i use a wheelchair to get round big places such as the trafford centre and sometimes if i'm not feeling so good i may take a portable oxygen cylinder out with me just incase i happen to need them for relief.
to some who may have things miles worse than i do, i am in no way complaining and 'bragging' about how 'sucky my poor life' is.
i am just confused as to when i am supposed to think the time is right for transplant?
if i am the one who has to approach my team about the whole thing?
do i wait for them to come to me?
do i feel ready to go through with it all yet if it's what they think is best?
so many questions i have thought about.. so they only way i'm going to know is to ask right?
i could be told i am in no position to be assessed as i'm too healthy yet.. i admit things are doing okay but i'm not going to lie. the tediousness of my life is starting to drag me to the point of tearing my hair out.

i have no motivation & inspiration to be aspiring to.. i am simply getting poorly, to get better, to get poorly, to get better, to get poorly, to get better and that's what my whole life and everyone around me lives revolve around and it sucks knowing i'm the reason there life has to be put on hold every so often because i'm back in wythenshawe hospital. it sucks being a little bitter about friends who have the energy, time and freedom to go out and have a ball and LIVE.
is it possible to be engulfed in a disease? to be totally controlled by it?
i don't want to come across like i'm feeling sorry for myself because my life is awesome... the people in my life are my reason for smiling and being happy and positive on life. i couldn't want or need anything more than i've got but a little more better health would be welcomed nicely.

i know this is my rant over for a really long time but i've felt really gutted this past two month with my health and just needed to express this in the way i know best. i'm crap at talking because i don't get my point across in the right way and i can't really explain what i mean and feel, so decided to blog it instead. might not even post this but then again.. this is what you guys subscribe and want to learn and hear and try to understand i guess?

just want to tell my mama, papa, beth, chels and arran that i love you all with everything i have to offer and i might not ever say it out loud often enough but THANKYOU for everything you all do individually or all together. THANKYOU for putting your own lives on hold alongside me when i happen to go on my holidays to costa del wythenshawe or just when i'm not feeling so good. i'm sorry i am such a pain in your behinds at times and i don't ever take you's for granted, i know how lucky i am to have each of you. mama, papa & beth you don't have a choice but to put up with me and care for me and love me <3
Arran & chels you guys just decided one day that i could count on you and rely on you to stick by me and look after me and love me! :) <3

soppy stuff over, i feel better already and know this slump is gonna be hitting the road as well as this viral infection :')

take care guys.. thanks for reading.
soph xoxo

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down low and up high

hello :)

just gonna get straight back into it and let you all know that the beginning is going to sound like abit of a rant and then the end will be some good news.. i promise. i just need to vent.

okay so i had an admission around 4 week ago and things were going okay actually, i had my peg tube changed to a button now which i feel alot more comfortable with. it wasn't simple getting it in but we got there in the end.. let's just say my gag reflex is disgraceful and a camera down the throat simply does not go down well with, whether i be sedated or not. i couldn't even manage to pass a NG feeding tube :(

anyhoo.. like i said, got there in the end.

so after three weeks of IV's i was discharged with my lung functions up, peg-to-button procedure successful and weight up as well as my infection level nice and low. i was still a little productive but numbers were up so i just went home.

the first week wasn't too bad and i was doing everything exactly as planned, taking all meds, all nebs, all feeds, doing physio etc and then i had my flu jab....

well things changed, be it coincidence or be it an underlying viral?
i started becoming more productive, i was up coughing during the night, i was achey and felt freezing cold. i left it over the weekend to make sure it wasn't just a side effect of the flu jab which usually takes a couple of days to go through my system but by monday morning i was a little worse so i called my cf nurses. they sent me a two week course of orals and i was placed on 500mg of azithromycin and 750mg of rifampcin.. just had to wait for my GP and chemist now.

as the week went on, i was no better and my appetite was slipping, it was taking close to all morning just to clear myself and feel close to actually wanting to start my day.

four days later, chelsey came round my house and i was still upstairs doing physio this particular morning, as i was feeling crap and unable to talk through coughing and catching my breath, she rang my GP surgery. the secretary insisted the prescription hadnt even been faxed, a little while later she suddenly recalled seeing it and sending it off to the pharmacy, we were advised to give them a call.

so chels did.

on speaking to a women at the chemist, they hadnt recieved my prescription.. so we called my GP surgery again! the rather 'snotty' and unprofessional secretary informed us that it had been sent to the chemist to which chels said she'd just spoken to someone and they hadnt recieved a thing for me; the secretary then changed the story and informed us that it was in a box infront of her awaiting to picked up by someone from the pharmacy along with others.

finally we got somewhere, after my mum calling all week and chels having to ring round oldham to find this prescription that apparently at the start of the morning hadnt even been faxed over from the CF centre, to suddenly being at the chemist and now being in a box on the desk at the GP surgery.

me and chels went down there ourselves and took it to the chemist to try and get me started on some orals.

that weekend i stepped on the scales and after the high of finally reaching my GOAL weight after nearly 2 years.. i was completly disheartned and dissapointed to see i'd lost weight and was back down to below my goal of over 9 stone. i felt like all my hard work was for nothing, had been thrown back in my face as i was catapulted back to square one again. i was doing everything i was supposed to and just 1 week after having 3 weeks worth of IV's i was right back where i started.

totally fed up was an understatement.

i suppose it can feel extremly tedious the ups and downs of CF. i've always known that but sometimes it's a little more prominent than others. this time round i feel like i have took 2 steps forward and 5 steps back. i'm hard on myself, i know i am but this is all i have my life revolving round at the moment, it takes over EVERYTHING.

i needed to snap myself out of the slump so i went to knowsley safari park with my bestest friend chelsey .we had a good chat and we got talking about transplants. we decided to make a little plan up of what i'd do post transplant (note: we were talking about if i need one, if i HOPEFULLY get one and also if i HOPEFULLY have a successful one)

i always thought i'd go to college and uni and get a great job and then things took a turn for the worse and as you all know i had to drop college and stay at home as it was getting too much, when me and chels were talking, i realised that if i had the very lucky chance to have a second go at things post transplant, i'd get a part-time job in a cute little sweetie shop and the rest of the time i would LIVE and LOVE every second of the life i would be living :)

it sounds absolutly perfect.

that following wednesday was a VERY important day, it was the day of my driving test and i am very pleased to inform you all tha.....
I PASSED........... WOOOHOOOO.

so here is where i stand right now, i have passed my practical driving test, i am better than i was when i started orals but i am back in costa del wythenshawe now on IV's so hopefully, i can try and fix myself a little. whilst i am being fixed, my motability car will be being made, wanna know what it is?...

A BLACK MINI COOPER

just like i have always wanted :D

its all very exciting.

well this is just a little update for you all while i did my physio. it's bedtime now for me though.

goodnight... thanks for having a read,

Take care, Sophie xoxo

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