Monday, 14 April 2014

Hitting 7K views!

Never in a million years when I started this blog, I thought people would read it...maybe a few hundred at a push!
Knowing people are genuinely interested in my life and welfare really warms my heart.
Thank you so much if you are a regular reader or this is your first time, thank you for taking your time out of your day to read this blog. I'm sure some stuff you have no clue what I am on about and maybe sometimes you have thought that all I have done is moan, I apologies if  that applies to you but no one said life would be easy, and no one mentioned how to get through it.


My goal is to inspire people, make people more aware of CF and also reassure people with CF its ok to speak out about it.
I'm pleased to say I have inspired a few people to make blogs of their own of their life with CF and that makes me feel like I have completed my goal.

Just knowing I have made someone feel more confident about themselves and CF makes me feel fulfilled.

I remember starting this blog and being nervous and worried about what people would think about me, my cf and writing a blog in general. Many people didn't understand the complexity of CF and I hope my blog has given a massive insight into this.

Here is a link to my first few blog posts - http://www.thegirlwithcf.blogspot.co.uk/2012_10_01_archive.html
As you can see I have progressed massively, but the whole concept of writing my feelings down for an audience to read was very new to me, now I feel comfortable expressing my feelings as many people haves similar feelings and can feel that they are not alone, that their emotions aren't abnormal.

 The last year and a bit that I have been writing has certainly been the most hectic for my CF and being able to share that with you has lifted a weight off my shoulders!

I am glad I have met new friends with CF and closely related to CF, that have become a big part of my life.

So thankyou - you know who you are!

Thankyou to my friends and family for always supporting me and keeping me on track!

Thanyou to my nurses and doctors for putting up with me and making me well!

And thankyou to you reading! It gives me motivation it write and share my story!

Here's to another 7k more!

- Stay lovely xxx


(some exciting stuff coming up in the next few days - expect another post soon!)

Sunday, 6 April 2014

Am I really an adult yet?


When being in and out of hospital like a revolving door, it gets pretty normal, a second home you could say.
I have developed many close relationships with many nurses, they know how I act, my personality, my likes, dislikes, they know a lot about me. So what if one day, I have to start a fresh? Make new relationships all because they see me as an 'adult', lose those valuable bonds with nurses and doctors, just because I'm no longer the right age to stay.
Moving to the adult clinic, is my next step in my life. I'm 16 now, it is something that is cropping up in conversation a lot in my clinics. Due to being 16, I'm getting to the end of my time in the pediatrics ward. But the term 'adult clinic' or 'adult center' isn't what I am, I'm not really an adult yet and the prospect of going somewhere where they treat adults and accept me as an adult is a little daunting.

I like the ward I'm at, they know how I work with treatments and medication and being at the stage where I'm going to leave and go to a new place is scary. They won't know me well and won't know how I like treatments. I mean I know that's what happens when you go to adults and you kind of just need to deal with it, but I'm not in the mood to be messed around, because I know I do not have the confidence yet to criticize any doctor or nurse, I'm not really an adult. I'm very young for my age, the way I act, the lack in confidence, How would I cope in a new environment? Yet this is what is being expected of me between now and my 18th Birthday.  It's not preventable, I knew this was going to happen one day but when I was 14 it felt like ages away, now I'm nearing this stage I wish I could turn back time and start again.
When I go into hospital now, I do feel too grown up to be there, I have little interest in going to the 'playroom' and painting a picture, I'd rather be getting on with work, which is impossible from the lack of wifi provided. But when I leave, I don't feel like an adult. I'm still young and the idea of having a say in all my treatments in the adult clinic is slightly frighting, I got so used to just being told what would happen to me, now I get a choice which is very strange. I mean why would you ask me if you can do a blood test? I will want to say no so bad, just tell me you're doing one so I can't argue with you because I know the blood test will have been suggested for my own good.
I'm just not good with change.

Blood Glucose

I'm currently on a blood glucose test, I have a monitor under my skin and I also have to stab myself with a needle 4 times a day, this should get a better picture of it I have diabetes or not.
They wanted this to all done before I go into adults
The results should be ready in my next clinic which is in June I think.


I don't really have much else to talk about, this was the only time I was free to write this, I have so much revision to do this holiday as when I go back I have like two weeks before my first exam. But then such a long summer! That is what is getting me through all this horrible time!

- Stay lovely xx

Monday, 24 March 2014

Looking back at my blog, I feel I have neglected it big time and I can only apologize!

I have basically left this blog un-attended for over a month, and a lot has happened!

My Birthday

My birthday is the 5th March where I turned 16. My parents got my an Iphone for my birthday, which I was very grateful for! My Birthday treat was going to see 5SOS on the Monday 3rd, I went up with my best friend and we got right to the front on the barrier! The experience was totally amazing, I never thought when we left school that afternoon we'd get right to the front to see my favorite people, it really was a crazy time. It was like one massive party and the other fans were so nice, there were some moments of pushing to get closer leaving us no choice but to forcefully push against this surge. Overall the atmosphere was brilliant and 5SOS were incredible (as always)  I'll post my pictures at the end of this blog
I also on the Saturday went out for a meal with 5 of my friends, we had a lovely time and I couldn't have chosen better people to spend my 16th with.

Hospital

Overall my hospital admission have been down, my last time I was in was January. Until now, I went in for a 10 day course of IV'S at the start of this week, due to have an Endoscopy at the end of the week at GOSH. Going there was very exciting, I don't know if thats the right word to use for going to a hospital, but it was interesting to see how they run things and what the cubicles were like...let me just tell you they are bigger than my ones...with en-suite!! Basically a 5 star hotel! haha!
My stay in my regular hospital was boring, I watched films (like always) but the bloods department thought it be fun to mix my blood with someone else's blood because they thought two people couldn't be having tombramycn levels checked at the same time. resulting in me having to give more blood away!
I'm finally having this glucose test the start of April which will finally tell my whether I have developed diabetes or not!

I also had mock week at school which was very stressful, all our exams crammed into one week, I'm so glad that the real GCSE's are like that!I got mixed results, but I am learning to prioritize, my exams will NOT define me as a person and if that means I have to find another way to do the I want, then I'll just have to do it.


Playlist of the week

I decided to bring this back, even though it wasn't really a thing - I decided I'll tell you 5 songs I'm loving this week!

- She Looks So Perfect - 5SOS
- That '70's Song - The Cab
- Time- Bomb - All Time Low
- The Mighty Fall - Fall Out Boy
- La La - The Cab


I'm not really sure what to right abut, please give me ideas - message me!


5SOS Concert Pics






Saturday, 8 February 2014

It's Febuary and I apologise for the lack of posts.

First off I got my English GCSE results back and I got a B but was onyl 4 marks of an A so I am defiantely retaking!

I also have just finished mock which has been crazy and I can't function poperly due to lack of sleep and just constant revision, some of my mocks went ok and some went beyond awful so I'll see what my results are in a few weeks. But it is soon the half term holidays so that will be a nice break.

Hospital

So I have managed to stay out of hospital for a while, i'm going back at the end of Febuary just to check everything, I got a new nebulizer called the I-neb. It is so quick and so much better than the eflow because that thing just slowly died and got slower. I told my mum an Iphone would go well with an I-neb because it's my birthday on March 5th so that was a hint towards that haha! She wasn't happy!
When I go backto hospital I will have the glucose test done for six days to find out if I actually have diabetes or not, it will be great to finally find out if i do or not!

I also made an instagram purely for CF - If you want to follow me there I'm thegirlwithcf


Thats really it because my life hasn;t been very interesting lately.


I'm going to see 5SOS for my birthday on March 3rd which is really exciting and their new single 'She Looks So Perfect' has come out and it made my week because its amazing so please check it out, they are amazing!

Thats about it!

- Stay Lovely!xxx

Sunday, 12 January 2014

Happy New Year!


Hey everyone, how everything going?

Woah over 6,300 views on my blog, thats crazy!

My new year started off quite well actually, I had barely any cough and was doing good. On the 9th of January I got my first GCSE results for maths, I took this exam back in November and I was positive I had failed it, it was a very hard paper! To make things worse we found out the grade boundries had all gone up making it harder to pass, all the teacher also new our results but couldn't say anything till the end of the day which was so annoying, I just wanted to know so badly!
1:50 came the time we were opening our results and I honestly don't think I have ever been so nervous in my life (exluding hospital haha). I opened it to find I got a C! And most importantly had passed my GCSE!! I was amazed because I got told in primary maths would never be my strong subject, i'd always struggle and there would be nothing we could do about it! BUT I DID IT!:D
We can resit in June which is good as i'll retake and go for a B, if I don't manage it they can't take my C away from my so its a win, win situation!
I also get my English Results on the 23rd of January or something like that, I feel slightly more confident on my english as we did course work which goes towards our final grade and I only needed 3 marks on the exam to get my C, so it looks hopeful!

Hospital


Today I tried my first ever Scandishake, they are quite nice actually I was suprised. I tried a chocolate one and I added chocolate ice cream to it.
A scandishake is basically a milkshake but with a lot more calories, it had 500 + calories in it. They are quite rich and slightly thicker than a normal milkshake. I also got the strawberries one which I'm planning on adding real strawberries too which should taste lovely, I have been recommened them because my wieght gain is poor again, I don't know why but I just am not very hungry all the time and I know its bad for me and I try my hardest to eat but its so had forcing yourself to eat food when you don't want too. My parents nag and it really annoys me but I know they are doing it for my own benefit I just hate being reminded of my condition.
I'm also going for my check up on the 21st of January, I have a hearing appoinment  in the morning and then I have an interview for a college and then I'm back to the hospital in the afternoon to see my consultant. I also am going on a 6 day glucose test, this gets inserted by your tummy and it measure your insulin throughout the six days, also for those 6 days I'll have to give my self a finger prick before each meal to check my blood sugar level because everytime I do the routine 24 hr ones I'm always boaderline so they want something more accurate to see if I have diabetes or not.
It should look something like this:



At this current moment I'm ill i think I may have some viral infection and I have to be careful not to turn it into a bacteria infection, my cough is gettitng worse sadly, to the extent my neck hurts and my back and the front of my chest due to pulling all the muscles, but I'll get through it. I think I need some oral antibiotics and if they don't work I'll ask for some intravenous ones.






Well thats about everything at this moment in time.
I hope your new year has started off great!

- Stay Lovely xx

Friday, 27 December 2013

A Year In Reflection

Woah this year has gone by really fast!
To think it is nearly 2014, I thought now would be a good time to look back on the year and think to myself, what did I achieve?

My year started off by seeing Passenger live before he hit the mainstream, my friend and I went and we got front row! This was amazing and just think how far he has come now!
Then it snowed and I had some fun in  my unicorn onesie, it was freezing but super fun!
I then got advised to be put on DNase I nebulizer used to loosen mucus, this has proven to this day useful and well worth the extra nebulizer.
In Febuary I then went to see One Direction! Which was crazy and the whole london and the O2 experience was amazing!
In March it was my birthday!:D And I also did the filming for the CF teen film which was a lot of fun and came out really well, heres the link if you haven't seen it! Click here to watch it!
I also sent off my make a wish form. I found out my sinus op would be in may and I had also done my prefect aplication.
April was a really fun month, I was in my school's production of Hairspray which was really good and I made some really good friends from it. I also had the idea to dye my hair purple for CF week, it was only an idea at the time!
In May I found out I was a Prefect and went for headgirl but was not successful but decided that shouldn't knock my confidence and went for House Captain.
I had my sinus op (finally) and my nose was clear for once! I had so many washes and nose sprays to do, it was mad!
I also got a CF recipe book with cupcakes which are 744 calories per cake!
June was when CF week was! I dyed my hair purple with permission from my headteacher and did a hula hooping competiton where pupils and staff joined in! Helping me raise over £1,000 for CF!
I got the role of House Captain! I also found out I sadly wasn't eligable for a make a wish due to not being ill enough, which I understand I am not as bad as some people.
Then it was summer! It was a really good summer and I was the wellest I have been in a long while because of the amazing weather we had!
I went to London Zoo, Camping, Alton Towers and Drayton Manor!
In August I got offered to try the tobi podhaler and the colobreath.
In September the CF video was relised and I was featured in my local newspaper.
In November I tried the colobreath and decided it wasn't for me and decided to try the Ineb instead.
I started looking round colleges and sixth forms too which is very scary! I also saw Lucy Spraggan who has amazing and so good! I had my first ever GCSE exams too (english and maths) which results come out early January!
In December (this month) i had my annual review and uped my creon strength. I also went to GOSH and had a DEXA scan which was fun and I was abnormally chatty to the lady doing it. I have to go back in febuary to check my stomach because it is not behaving!
I also went to see Union J which was brilliant, they were really good it was crazy!
I also got an A in my chemistry mock which I know I have mentioned before but I am still shocked I achieved it!
Now Christmas which I got some really nice things and I'm so happy and thankful for them!


New Year

Do you have a new year resultion yet? I think mine is gunna be drink less coca cola because that stuff does not help my teeth and maybe not too worry as much about things because everything turns out ok in the end. Also to revise and work hard for my exams...wow I have quite a few this year!
2014 is going to be a manic year, mock exams, real exams!!! A new school....it will be a very challenging year for me and I feel I'm gunna struggle slightly but i'll cope!
Lets just hope 2014 can be my year I am wellest and have a fab year!!


- I also have had over 5,000 reads which is madness thankyou! (I might start a youtube in the new year too)
- Stay Lovely xxx

Thursday, 5 December 2013

I apologise!

My blog schedule has gone! I'm sorry!

First of my annual review clinic was ok actually.
The dietician seem to understand how food can get boring and recommened a few simple things to help me out, and I also have now upgraded from creon 10,000 to creon 25,000! I'm feeling all grown up!
My physio looked at my posture coming to the conclusing my spine is a bit too bendy? Also I don't need to use my flixotide puffer anymore as it doesn't really help me!
They were also talking about when I have to move to adults which is scary! But the agreement is to start talking about it after my GCSE's which is a relive!
I have a bit of a cough at the moment only because its winter and my body seem to cope with winter well!
I also have a bone density scan soon which will be exciting, never had one before!

School
My first application for sixth form has been posted which is so scary and the prospect of moving on is really becoming a reality and it is really happening too fast for me.
I have good news though I did a chemistry mock and I got an A!! My FFT is a C and my teacher said I could get a B if I tried hard but no way did I think I'd ever get an A so saying I'm over the moon isn't even close, I was really proud of myself!

I also did a talk to my science class about my CF as it comes up in Biology 2, which was amusing! They were really nice about it and I showed them my video which seemed to go down well, maybe I should start getting paid and go round school just talking about it! ha ha! :D

I find out my GCSE results in January which is scary for English and Maths I hope I have passed so this not so much pressure next time around!

Christmas!
Christmas is so close now, i'm so excited! I thought i'd share with you what is on my christmas list!

- 5 Seconds Of Summer Tickets
- 5 Seconds Of Summer merch
- Urban Outfitters stuff
- Shoes, like vans and things

And some CD's like Lady Gaga's ARTPOP and Nirvana

I don't know what else yet which is really annoying my mum as it isn't helping her!

I am also seeing Union J in 17 days! Exciting!!


I'm so sorry it has been so long but I will be updating more in the Christmas holidays! ( I can't wait til the holidays!!)

- Stay Lovely xx