Up The Farway Tree

Never enough time...

I have never quite got round to blogging as my time has just been swept away the last couple of weeks and I have never quite caught my tail.

At the weekend we had to head back to mum and dads again in preparation for my uncle's funeral. We had a rosary on the Sunday night with close family and the funeral was on Monday morning. There were people from all areas of his life and it was nice to see so many people gather together - many of whom also accompanied us to the graveyard. Afterwards people gathered in the church hall and then close family returned to mum and dads for a little while which was nice and gave us all a chance to talk about old memories - lots of stories I had never even heard before.

I also have to say with great sadness that Jessica Wales passed away this week, aged 20 years. She developed complications following her transplant and was just not strong enough to fight any longer. She had touched many people both in her personal life and also through the media work she did on behalf of LLTGL. She had made many celebrity contacts through a twitter campaign and Natalie Imbruglia even headlined a concert - Save Jess-tival - on her behalf. Messages of condolence flooded in from many high profile people including Sarah and Gordon Brown who had been touched by her story. I think this just goes a little way to show how much impact she had in her short life - and it is this work of campaigning that LLTGL are determined to carry on. No one should have to wait this long for a transplant and there is a lot of work still to be done to improve this situation. I think if we can all adopt even an ounce of Jess' enthusiasm for spreading the word then we will start to make a difference.

On the topic of trying to make a difference, myself and Emily are starting to move forwards again with our booklet. It is so hard for us both to find the time needed for this project but we are slowly but surely getting there. I designed a short questionnaire this week in order to get some rough statistics for our booklet and within 48 hours of asking the CF community to help complete it we have nearly reached the 100 responses needed :-) It's amazing the support you can get when you ask.

I have also been busy this week because I was doing some extra PBL at the uni so covered another group as well as my own. The groups were back to back and on the same subject matter so it wasn't too bad - although I am very tired now! The topic is on lungs at the moment which is somewhat ironic.

I managed to catch up with my friend and her husband - who was caught in an avalanche at new year. He had a lucky escape but has broken his leg in three places (all pinned and screwed together now) so will be hobbling on crutches for a while. Hopefully the recovery will be smooth and there will be no lasting damage. I think boredom might become the main issue in a few weeks time! Myself and Andrew are also going to visit a friend and her husband tomorrow for an overnight so I am looking forward to catching up as we have not seen them for a while.

Finally, I also had an appointment with facial pain guy who says he has now reached the limit of his knowledge so needs to pass me over to pain clinic. Unfortunately I have not received an appointment yet even though he did the referral was back in October. His secretary was going to chase this and re-send letter if need be. It is so frustrating!! I am also hoping that whatever they suggest might inadvertently help the joint pain too as this has been quite bad lately - largely pain in one hip which is making walking sore - but also having pain and stiffness in my fingers which is new. I suspect the finger pain might be weather related though so perhaps the milder weather will help (when it comes!) Not sure about the hip though - it's exactly what I had last year but in the opposite hip. I tried to run across a pedestrian crossing yesterday so I didn't miss the green man and I nearly fell over because it sort of gave way. I looked like some bumbling mad woman haha. Nothing new there then. Anyway hopefully the referral will get sorted and we can start a new plan of action for this year and then I will be raring to go :-)