Saturday, August 22, 2009

Bit of a lapse in blogging!

Hmmm..... so I think my last blog was the pictures from my holiday (I really should of checked that out before I started this one!)- Ok I was wrong! I just went and checked quickly.

So since I've last blogged there has been a mixture of good things and bad things happening.
As I write I have currently been dating somebody for 17 days (woop woo!) and we are very happy at the moment :). We have taken a daytrip down to great yarmouth! His parents were away on holiday and had forgotten some medication, so we took it down to them, had a game of mini golf and a carvery before heading back home again. On this particular trip he learnt that I am a rubbish navigator!! I was supposed to be helping him with directions from about King's Lynn, which is all he really knew upto, but I fell asleep within about 20minutes of the journey and didn't wake up again until about 10mins away from Great Yarmouth-oops!! Good job he had borrowed a sat nav!!!! :)

The not so good news is that my brother and his partner were expecting a baby and she sadly lost it on thursday. They believe it is a miscarriage but there is still a slim chance that she is actually still pregnant but it is an ectopic pregnancy, which means it isn't a viable pregnancy. She is still having some more blood tests done to confirm which it is and whether more investigation will need to be done or not. I felt so sad for both of them, when they came to my parents house from the hospital after hearing the news. One of the hardest things I've ever had to do is comfort and hug my twin brother while he is in such obvious distress. My mum didn't know what to do either- they were both crying and she didn't know whether to go her son or his partner, she ended up hugging her and holding her, while I had my brother. I was so close to tears but we had someone else in the house and my little rational head kicked in and I went and kept them occupied in the garden (they are only 4), while the others all had a good cry together. To be fair the young one was very good and responded very well to a bribe of a gold penny (£1) if they played outside until me or mum said they could come back in and even more so when offered a biscuit and some apple juice (big treat!!). Although this pregnancy hasn't been successful they did go for carrier testing and found out that both are free from the CF gene, which means should they try again they know that CF is something they never have to worry about. I was pleased for my brother knowing that it means its not something he had to worry about. Before the results were back he had had some serious thinking to do anyway as if the baby was born with CF, I would never of been able to spend anytime with it knowing that im chronically colonised with pseudomonnas, as it just wouldnt of been fair on the baby. I think that really hit him, as I know he goes into denial about alot of aspects of CF, which isn't overly surprising and I think he sometimes feels guilty that he doesn't have CF but as his twin I do. So while I was happy for him to not be a carrier I also had a very selfish moment (and quite a few tears) over the fact that I ended up with CF and that he wasn't a carrier and it seemed so very unfair!

So that's all the sad bits ( I hope!).

Today I went to see the Bikers Branch of the Royal British Legion set off on a sponsored bike ride for the RBL. I got to have a ride on of their bikes- very exciting:

And the other two photos I've just tried to add have just disappeared! So I may try again later with them :)

My best friend is coming today as well to stay with me until tuesday-extremely happy and excited about this. I haven't seen her in nearly 3months!!!! Then on wednesday its my birthday-woop woo!

Will try to blog more regularly

Thursday, August 6, 2009

Bill Bailey, Oliver! and Clinic

Last wednesday me, my sister and my sister's partner all went to see Bill Bailey in Nottingham. I still really love Bill Bailey and whilst the show was just an updated version of Tinselworm, which I had already seen live and own on dvd, it was still really funny!! It was a good night out and I look forward to going to see Jimmy Carr with them both in November.

Saturday I went on a coach trip to London with my parents and we had tickets to see Oliver! It was a really good show and I also enjoyed that very much. I was abit disappointed that the boy playing Oliver wasn't one from the search for an oliver bbc1 and also felt a little bit let down by
Jodie Prenger as Nancy, the acting in a couple of bits was overly melodramatic and just not good!! but overall a very good show. I was very happy to of got the opportunity to see it on stage at the west end.

Sunday was a quiet day as was monday. Tuesday I had a meeting with the group I'm part of. The result of that meeting meant I spent all of tuesday evening and most of wednesday afternoon scanning in sheet music and sending it to various cast members, so we can all start to learn the words for out next show. I still have a few little bits left to do, which I will do tomorrow evening.

Today I was at clinic and was some mixed results. Positively my lung function had increased by 4%, so I am now at 76%. Whilst this is still good its still not the best it has been, especially in comparison to this time a year ago. In not so good news my weight has dropped 4kg in a month (Definitely not good!!) but still higher than it was 6months ago. So thats abit of a mix there of good and bad. The final result is definitely not good! My dietician finally told me today the results of my blood tests in regards to vitamin levels from my annual assessment in february. They are not good. My vitamin a, e & k are all low and my vitamin d level is dangerously level. Apparently everbody should have a vitamin D level of at least 75%, mine is 12%. Which is quite a big difference between the two. She didn't say what my scores were for my other vitamin levels just that they were low, but nearer the normal range than my vitamin D level is. This needs to be resolved by adjusting the doses of my vitamin tablets and will prob work out at an extra 7tablets on top of what I'm already taking. The dietician is going to work it out and then send the new prescription to my GP for them to prescribe it.

So overall a mixed clinic but quite a quick one for them - out in an hour and a half!