I think I should be named The Great Victorio, or some similiar cheesy magician's name because I seem to have a knack for magic tricks....
I had a phone call today that told me that (drum roll here!) The MRSA is gone again! Now if thats not a good disappearing act what is? Now you see it now you don't folks.
Unfortunately this doesn't really make a difference with the awards because I need to have been free of MRSA for 6 months which I obviously haven't been, but I am still happy it has gone again.
It is a right pain that it surfaced again at this time, but I'm assured by everyone that the awards will still be fantabulous which I'm certain they will be. I do believe that everything happens for a reason and this is no different, for some reason this is how it has to be and thats that.
I also want to say thank you to all my lovely friends who have left nice comments, and shown me support via emails or texts. I'm a very lucky girl.
Now, for my next trick, I'm going to saw someone in half!! Any volunteers.....?
xxxxx
Just thought I'd point out that I've updated three times in the last week, so have a read back in case you missed an entry!
Also "the great Victorio" is not a very cool magician name and if I was to become a magician I would think of something better ;)
Wednesday, 30 April 2008
Saturday, 26 April 2008
You shall go to the ball!
I had a bit of a rough day yesterday. A lovely nurse came to see me from my hospital for a routine home visit.
Everyone who attends the CF awards has to have a letter from their hospital that says they aren't growing certain nasty bugs. This is done so that cross-infection risk is minimised, and is important for the safety of everyone. I have grown MRSA before which is obviously one of the nasties they have to be careful of, but have been free of it for nearly two years now.
Imagine how gutted I am I was when my nurse told me that it has come back just before the awards. I honestly could have cried when she told me. What made me more upset was that the hospital had known since Feb but the information hadn't been passed onto me. I have visited my transplant center 3 times since this result and have not been isolation or anything so have put others at risk without realising it.
My mum immediately went and found my awards letter and I am still allowed to attend but will have to remain in isolation. I get to watch the ceremony via a tv link, still get to stay at hotel, and the celebs will come and see me separately after the ceremony. Apparently if i win i can still collect my award but I will be brought in a different way and will be taken straight out afterwards :(
I'm trying to look on bright side of it all, at least i wont be puting myself or others at risk, and i still get to attend which is the main thing. The trust have been so kind, I'm sure it will still be a lovely night.
I should explain that the MRSA is only in my lungs and doesn't really effect me as such. It is however a hard bug to get rid of and can obviously be dangerous to others with low immunity or open wounds etc. I am not to concerned but will be trying to work out an action plan with the hospital as if it was found on my skin we would have serious problems as this is a contra-indication for transplant.
So definately a bit of a bugger and I was pretty fed up yesterday (my lung function wasn't great either despite feeling ok in myself) but I am SO glad that I won't miss out on the evening and am trying to keep it all in perspective.
XxXxX
Everyone who attends the CF awards has to have a letter from their hospital that says they aren't growing certain nasty bugs. This is done so that cross-infection risk is minimised, and is important for the safety of everyone. I have grown MRSA before which is obviously one of the nasties they have to be careful of, but have been free of it for nearly two years now.
Imagine how gutted I am I was when my nurse told me that it has come back just before the awards. I honestly could have cried when she told me. What made me more upset was that the hospital had known since Feb but the information hadn't been passed onto me. I have visited my transplant center 3 times since this result and have not been isolation or anything so have put others at risk without realising it.
My mum immediately went and found my awards letter and I am still allowed to attend but will have to remain in isolation. I get to watch the ceremony via a tv link, still get to stay at hotel, and the celebs will come and see me separately after the ceremony. Apparently if i win i can still collect my award but I will be brought in a different way and will be taken straight out afterwards :(
I'm trying to look on bright side of it all, at least i wont be puting myself or others at risk, and i still get to attend which is the main thing. The trust have been so kind, I'm sure it will still be a lovely night.
I should explain that the MRSA is only in my lungs and doesn't really effect me as such. It is however a hard bug to get rid of and can obviously be dangerous to others with low immunity or open wounds etc. I am not to concerned but will be trying to work out an action plan with the hospital as if it was found on my skin we would have serious problems as this is a contra-indication for transplant.
So definately a bit of a bugger and I was pretty fed up yesterday (my lung function wasn't great either despite feeling ok in myself) but I am SO glad that I won't miss out on the evening and am trying to keep it all in perspective.
XxXxX
Wednesday, 23 April 2008
smiley girl
Wow! where did that week go?!
Right first of all last Wednesday. Most of you will remember my lovely friend who arranged for the Phantom to come for tea a few months ago. Well, my 21st birthday is less than two weeks away now and as her present to me she announced that she had booked tickets to go and see Phantom! Bless her and the two other people involved, T and L, they had thought of everything. T borrowed his dads jeep and drove us all the way up to london so i didn't have to struggle with public transport, dropped me right outside the theatre and got seats at ground level.
The performance, as always was absolutely magical, and although it probably sounds very silly and sentimental, but i could feel the tears in my eyes when those first notes were played. I love this musical and it holds so many good memories for me, being able to watch after so long was absolutely amazing.
After the show we all went backstage to the Phantoms dressing room. This was indescribable for me! The times i have waited at the stage door over the years made it a very surreal experience to be going inside! Ramin (phantom) was charming as always and I had a fabulous time!
Its amazing to me that people go to the bother of arranging these things for me. I have so many wonderful, and kind friends and family who do so much to make me smile. I really am very grateful.
Work still continues on the uni work. I have got quite a bit done now but am still pushing on with it all. Im also quite pleased today that I have finally decided on a dress for my 21st. I have friends and family coming over on the day so wanted to look nice. It was quite a long search but I'm very happy with the end result, although its a bit shorter than i would usually go for! Better start moisturising my legs!!!
Have a good week everyone!
xxxxxx
Right first of all last Wednesday. Most of you will remember my lovely friend who arranged for the Phantom to come for tea a few months ago. Well, my 21st birthday is less than two weeks away now and as her present to me she announced that she had booked tickets to go and see Phantom! Bless her and the two other people involved, T and L, they had thought of everything. T borrowed his dads jeep and drove us all the way up to london so i didn't have to struggle with public transport, dropped me right outside the theatre and got seats at ground level.
The performance, as always was absolutely magical, and although it probably sounds very silly and sentimental, but i could feel the tears in my eyes when those first notes were played. I love this musical and it holds so many good memories for me, being able to watch after so long was absolutely amazing.
After the show we all went backstage to the Phantoms dressing room. This was indescribable for me! The times i have waited at the stage door over the years made it a very surreal experience to be going inside! Ramin (phantom) was charming as always and I had a fabulous time!
Its amazing to me that people go to the bother of arranging these things for me. I have so many wonderful, and kind friends and family who do so much to make me smile. I really am very grateful.
Work still continues on the uni work. I have got quite a bit done now but am still pushing on with it all. Im also quite pleased today that I have finally decided on a dress for my 21st. I have friends and family coming over on the day so wanted to look nice. It was quite a long search but I'm very happy with the end result, although its a bit shorter than i would usually go for! Better start moisturising my legs!!!
Have a good week everyone!
xxxxxx
Monday, 14 April 2008
London Pride
Hello!
I can't believe a whole week has gone by since i blogged last! Everything is good here, I'm keeping ok, have been very busy with OU work. Nearly finished my first course now but have an end of course 3000 word essay to complete, one last effort! I want to get it finished asap because obviously im so close to the end of the course that if i got my transplant at this late stage i dont know what would happen with it (i cant pass the course without it). I'm sure something would be sorted out but best to get a move on just in case.
Yesterday I watched the marathon coverage on tv. I absolutely LOVE the marathon and for years we have gone up to london to cheer on the runners. Unfortunately because of the bad weather i couldnt go this year, sitting in my wheelchair means i get very cold and wet and i didnt want to risk getting ill, plus alot of stations were shut which is my worst nightmare having to walk from station to station.
I would say though that if you ever get chance to go up and watch you should jump at the chance, it is an AMAZING day out. The sense of community and goodwill is everwhere, thousands of people from all backgrounds running together, most for charity, helping each other along, and strangers cheering on people they've never met. It gives me a sense of real pride and is truly awe inspiring. The stories behind the faces are humbling too.
If I get my transplant the marathon would be an ultimate goal for me, I would absolutely LOVE to take part one day and think it would be an amazing tribute to my donor.
Anyway I must go now and get some more work done. It's my 21st birthday coming up next month and I have a some lovely things to look forward to, one of which is on Wednesday, I will blog after but suffice to say it will be phantastic! ;)
What else?! x
I can't believe a whole week has gone by since i blogged last! Everything is good here, I'm keeping ok, have been very busy with OU work. Nearly finished my first course now but have an end of course 3000 word essay to complete, one last effort! I want to get it finished asap because obviously im so close to the end of the course that if i got my transplant at this late stage i dont know what would happen with it (i cant pass the course without it). I'm sure something would be sorted out but best to get a move on just in case.
Yesterday I watched the marathon coverage on tv. I absolutely LOVE the marathon and for years we have gone up to london to cheer on the runners. Unfortunately because of the bad weather i couldnt go this year, sitting in my wheelchair means i get very cold and wet and i didnt want to risk getting ill, plus alot of stations were shut which is my worst nightmare having to walk from station to station.
I would say though that if you ever get chance to go up and watch you should jump at the chance, it is an AMAZING day out. The sense of community and goodwill is everwhere, thousands of people from all backgrounds running together, most for charity, helping each other along, and strangers cheering on people they've never met. It gives me a sense of real pride and is truly awe inspiring. The stories behind the faces are humbling too.
If I get my transplant the marathon would be an ultimate goal for me, I would absolutely LOVE to take part one day and think it would be an amazing tribute to my donor.
Anyway I must go now and get some more work done. It's my 21st birthday coming up next month and I have a some lovely things to look forward to, one of which is on Wednesday, I will blog after but suffice to say it will be phantastic! ;)
What else?! x
Friday, 4 April 2008
Lights, camera, ACTION!
Today was very exciting!
The PR company came to film my footage for the awards! To say I was nervous was an understatement (i may or may not have been sick with nerves before they came) but I needn't have been. I know it sounds stupid but, being restricted in where and when i can get out makes me feel quite cut off from people. I don't meet many new faces and being with your own or familiar company doesn't do much for your social skills, I get very intimidated and worried in these situations plus i'm very shy anyway which doesn't help. It really makes you doubt yourself.
Obviously the prospect of three people and a rather large camera didn't fill me with self confidence, but the team were absolutely brilliant! They were all so friendly and really took time to sit and put me at my ease. Kit the producer sat and talked through what would be happening while Lee and Stuart set up in our garden. We filmed outside because it was such nice weather even though our garden isn't up to much at the moment!
They were all really attentive to how much I could do without being tired which was another big relief! We filmed an interview where I could talk about my life and how CF affects me, then we did some still shots that will be combined with special effects and some footage of me doing everyday things that the interview answers will be played over.
To be completely honest a day I was dreading turned into a really good laugh. I had lots of fun and enjoyed chatting with the guys,it took me out of myself.
They filmed for about two hours but it will be condensed down into about a two minute clip. They like to get as much film as possible so they have the choice in what they use.
I have also bought a dress after alot of shopping. The awards are on the 29th of May....I can't wait now! xxx
The PR company came to film my footage for the awards! To say I was nervous was an understatement (i may or may not have been sick with nerves before they came) but I needn't have been. I know it sounds stupid but, being restricted in where and when i can get out makes me feel quite cut off from people. I don't meet many new faces and being with your own or familiar company doesn't do much for your social skills, I get very intimidated and worried in these situations plus i'm very shy anyway which doesn't help. It really makes you doubt yourself.
Obviously the prospect of three people and a rather large camera didn't fill me with self confidence, but the team were absolutely brilliant! They were all so friendly and really took time to sit and put me at my ease. Kit the producer sat and talked through what would be happening while Lee and Stuart set up in our garden. We filmed outside because it was such nice weather even though our garden isn't up to much at the moment!
They were all really attentive to how much I could do without being tired which was another big relief! We filmed an interview where I could talk about my life and how CF affects me, then we did some still shots that will be combined with special effects and some footage of me doing everyday things that the interview answers will be played over.
To be completely honest a day I was dreading turned into a really good laugh. I had lots of fun and enjoyed chatting with the guys,it took me out of myself.
They filmed for about two hours but it will be condensed down into about a two minute clip. They like to get as much film as possible so they have the choice in what they use.
I have also bought a dress after alot of shopping. The awards are on the 29th of May....I can't wait now! xxx
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