Completely un-cf related but I thought I should blog it anyway.

Hey guys!

My blog update today is gonna be completely un-cf related but I want to blog it because it is important to me and the way I am feeling. First of all I would like to say that most things on the cf side of things are ok apart from my stomach. The bo-tox really hasn't helped and it has been causing me a lot of pain but apart from that everything else is hunky dory.

So my blog today is gonna be about love and how it has changed me perception on life and life surroundings.

Love is a difficult subject for me because I genuinely find it hard to trust people and let them into my life because I have been hurt so many times I cant actually count on one hand. Of course I am not completely innocent and I am sure some of the people that have come into my life wish they hadn't. I used to let people into my life and trust them straight away because I didn't know that they were gonna hurt me. I've been cheated on and I can tell you now it absolutely kills you. It makes you think that you are worthless and that you aren't good enough for anyone because they obviously found someone better. At the moment I really don't want a relationship, not because I wouldn't want someone to be there and to have a laugh with I just don't think I can cope with getting hurt again. Sometimes I think that people go off me because they realise what my health issues entail and can't cope with how much time and effort it consumes out of my life, I know I shouldn't think like that because I am sure that isn't the case but I can't help it sometimes. When I love someone I don't ever stop because that way my heart doesn't hurt but it can be hard especially when your feelings come back for someone. When you love someone with all your heart and soul that feeling will never disappear and they can hurt you a million times but your love for them will never change. I guess that is why I find it hard to let people in because I am always worried that they will never feel the same for me as I do for them. My relationship I had when I was going through my transplant and when I was ventilated was amazing, best relationship I have ever had because we understood each other and we got on so well. I can never take away what he done for me because he saved me and got me through some pretty horrendous times. I guess it just faded like most things do but my feelings for him will never change. To be honest I am surprised he stuck around, most guys when they see the slightest signs of danger bugger off because they are scared to face up to it. I guess that is stereotyping a little but its the experiences I have had. I am glad for those memories and I am glad that someone was there for me when I really needed it but I still can't bring myself to have a relationship in case that sort of hurt and sickness happens again.

Sorry for not posting about my cf but I wanted you guys to understand a bit about me.

Grace xx

Things need to change!

Hey guys!

My last post was pretty much me being down in the dumps again! well, things need to start to change because I am absolutely fed up of feeling rubbish, my lungs and my liver and pancreas are all working fine and that is something I am grateful for everyday of my life! I am glad that I can still run and walk everywhere and that I have come within a few inches of death and have walked through the other side. It has given me a great perspective on my life and what the word "life" actually means, yes I am going to have bad times and times when I am in pain because that is what comes with the nature of my illness and I have accepted that, what I wont and refuse to accept is the "end stage" of my illness, I really hate it how they call it that because its the persons choice whether or not they want to give up or not, its up to them if they want to hang on to get that call for transplantation. People are scared of CF because of what it can bring, what it has brought. I am not scared of CF because I know I will beat it. Yes that's right, I WILL beat it, not just for me but for all the lives that didn't need to be taken (Brian) I will fight with what ever it takes to here the words "cystic fibrosis has been cured" just you watch me CF, you will never have me, or define me. I am an individual, your just one aspect of me. I will run this marathon to prove that I can reach the stars, to prove that just because I am CF does not mean I am not able to do things on a BIG scale.

All I have to say is... CF....bring it on.

p.s if you want to sponsor me here is my money giving page.

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=GraceRosam&pageUrl=3


Grace xxx

A bit up and down but I'll get there

Hey guys!

So my last post was about my annual review and how it went really well! It has been a bit up and down since then because I keep getting terrible mood swings..not just ahh I'm so angry or ahh I'm so upset..proper full blown I hate the world mood swings.. I personally think its because I am still not over the death of my friend and I still can hear due to fluid behind my ear drums..so it has all built up over the last couple of weeks, going to the hospital tomorrow isn't helping the situation either because I may have to have another blood transfusion because my blood count is low..yet again! So its all a bit blehh right now. Bless my mum trying to make me feel better by buying me a LOAD of chocolate... it can't be easy on her either watching me suffer emotionally from my CF.. this seriously has been the longest I have been struggling for though because normally I pick myself up and dust myself down pretty well! I'm seeing Anna (my physiologist) next week which should help a lot, she got me through my transplant and when I had to go on a ventilator so this should be easy :L well..I'm hoping it to be easy.

I want to talk about my friends now.. I actually have no idea how they put up with me! I love them all so much... I am going to mention a few names and I hope I don't get flagged for it! My conversations with my friend Andy are just to funny! He always knows how to make me laugh! although I do crack myself up too! My friend Kira has really supported me after the loss of my friend Brian! can't thank her enough really, she picked me up in a really dark moment! My friend Linsay who is also Kiras sister..she always knows how to get me laughing! and her birthday was a gooood day! (nandos and hide and seek in Ikea) All my other friends are amazing too but these three really picked me up after the loss of Brian.

I'd also like to say that my friend Andy is also running the half marathon and if you would like to sponcer him then please let me know :)

Grace xx

annual review

My annual review went very well actually! waaaaay better than I expected! My lung function is practically normal for my height and age! normal meaning someone without cf, so I am pretty pleased about that! Also my liver is holding out good as well and so is my pancreas! which is amazing. It was a long day because I had a liver appointment after my annual review because they like to combine appointments so I don't keep having to go back to the hospital all the time. They are happy with my weight but I need to slow down on all the fat things I eat because I am getting a chunky monkey! I dont absorb vitimin D very well so I am new tablets for that and so far they seem to be doing the trick! My bones are still weak but they are not sure whether its just soft bones or brittle bones because I am still quite young! hopefully its just soft bones because I really dont wanna have to deal with brittle bones too! I have my follow up appointment in a few weeks time so I will let you know the results of my chest xray and glucose tollerance test then!

I am very pleased with the overall outcome of my annual review and it has given me a much needed boost! Time to carry on kicking Cfs butt and get into gear for my half marathon!

thanks for reading

Grace xx

Positive things because I've been negative for a while.

Today I'm going to write about all the good things in my life because recently I've been so negative.
Ok, let's start with my beautiful sister! She's my world! I love her so much! She looks so much like me and she's a little cutie! She's one years of age and already has such a personality on her!
Next thing is my friends and my twitter cf family!! My friends are amazing! They picked me up a lot this week after loosing my friend Brian. Couldn't live without them! My twitter cf family are also amazing! Such a strong bunch of people and they always help you out when you need it! They also picked me up when I lost Brian.
The next thing is my college course. I really love studying health and social care because I really want to be a nurse and I find the overall subject interesting!
The next thing is my lung function! My lung function really isn't that bad compared to some people's, it currently lies at 76% and for an 18 year old that's not bad!
The final thing is my close relationship with my family. Without them I wouldn't be here today and I love them to bits for all there support!

Thanks for reading!

Grace xx

Such a sad week.

Three lives have been lost this week to this poxy illness. I have lost my good friend Brian. He helped me through so much and now he's gone. I can't tell you enough how important organ donation is because his life didn't have to end. I am really struggling recently to pull myself round from all this bad news. I know this sounds so selfish but all these deaths due to cf have made me think about my life and what may happen in the future. I don't want to die :'( and I'm sure Brian didn't either. He really inspired me because he was on the transplant list for lungs, heart and liver. He never got them in time..I'm so grateful to whoever gave me my organs. It makes me value my life so much. I just hope that Brian finds peace and that he's breathing easy now. Such a lovely guy! My thoughts are with his wife and family. He's gonna be greatly missed.


Sorry for the depressing blog but I need to sort out things in my mind.
Rest in peace Brian and the other two cfers who passed. God bless.

Grace xx

My thoughts and feelings over the last two weeks

Hey guys!

As you read in my last post that I have been struggling a little with my CF. Well, I thought I would write about how I've been feeling because I know some of my CF family can either relate or have helped me through these two weeks.

Well..I'm not going to sugar coat it..I've struggled and I've been in horrible pain. Most of my blog is quite positive towards my CF and how I deal with it..well I'm going to warn you that this post isn't going to be positive..its gonna be harsh..reality..and most of all very personal so if you don't want to read about how I have suffered then I suggest you stop reading now.

So these last two weeks I have been on such a huge downer. Loads and loads of things have been going through my head..none of which are good things. I will start with my attitude to friends. My friends have always been amazing when it comes to my CF, always there for me and I love them for that. But I have really pushed everyone away these past two weeks because what is the point of putting your friends through the stress about worrying about you? or the stress of hanging round with the "sick" girl, now I know that my friends have never thought that but I cant help but think it. Then I shall move onto relationships..I had an amazing relationship for nearly two years and he was there for me throughout my transplant and when I had to go on a ventilator for my breathing, I will not take that away from him because I owe him my life for that but right now I cant be in a relationship, not because I don't want to be but because I don't want to put anyone through the emotional roller-coaster that is my life. I don't want them to watch me suffer like my family do, that is hard enough for me to deal with. I hate seeing the look on my mums face every time I get sick..it rips me apart. I never tell her that because she is my mum and she loves me very much. I have to be "brave" around my family and friends because I hate being the one who is seen as weak, seen as vulnerable. I cant deal with that. So when I'm sick I put on a shell and get on with it..that is all I've ever known to do. I don't want my partner to see me without any make up or looking rough on a hospital bed because to me a girlfriend is gorgeous..well..when I'm sick I am far from that!
This bit is going to hurt most of you so please stop reading if your already nearly in tears.

The last part of my feelings these two weeks have made me over think and I've come to the conclusion that I am a ticking death sentence. I don't ever think this when I am well but when I am down I am really down. CF shortens your life..so in theory it is a death sentence. Not a death sentence that completely punishes you because of course you can have good times and be happy but when your sick with CF you are really sick..any person who doesn't have CF and gets a cold or a cough..it will go in a week or two...mine goes in about a month or more. Sometimes it is so hard to deal with but I get on with it because thats what I do. I survive. I'm so grateful for my twitter CF family, they have spoken to me and got me through and urged me to carry on.. Thank god for social networking!

Sorry for such a depressing blog but I thought you ought to know how I feel when I get sick!

Thanks for reading!

Grace xx

Sorry I haven't updated in a while (cf side of things)

Hello guys! 

Sorry I haven't updated in a while! a lot has happened so I haven't really had the chance. So since I last updated I've had a really nasty ear infection! both ears have suffered but my right ear the most! it was soooo painful. I couldn't really stand up without feeling all dizzy! My chest has been playing up too! I really hate winter because it messes up my chest so much! winter makes me feel so rubbish and drained!  Also I've had my bo-tox operation. The operation went ok! I was very scared about having the general sedation because the last time I got put to sleep I woke up and I couldn't breathe and I had to spend 3 weeks on a ventilator..so I was a bit nervous, understandably. I woke up and I was fine though! I was so relieved. A few hours later I was allowed to go home..BUT as soon as I arrived home, about ten minutes later we got a call from the ward to say that my haemoglobin level was low (blood count) and I needed an emergency blood transfusion. So we had to drive all the way back to London to the hospital and for me to stay the night, I felt a lot better after I had it but I was annoyed that they didn't spot it before. Since then my chest hasn't been brilliant but I went to the gym today and ran four miles, so I cant really complain ;) aha. These last two weeks have been really hard on me and I've been at my lowest point for ages. Of course I will never give up but I really have felt like its been one thing after the other recently. But I will carry on because its what I do best! Fight. 

Thanks for reading guys :) 

Grace xx