Sunday, May 20, 2012
Another year alive. And like my family always say every 20th of May - "We're winning".
Having a long term illness is funny. It doesn't really dawn on me that I could die from CF, or that I should have died at 10 if it wasn't for my parents. It sounds weird, but it's easy to forget. So on every birthday, it's remind you that your still beating CF, and will continue to do so. In case it's hasn't registered with you....it's my birthday today, and for some reason, every other CF'er out there always asks "and what age are you", so to put everyone's mind at ease, I'm 26. This question probably stems from the opening sentence of the paragraph. I'm on the other side of a 1/4 of a century now!!!
I got a new Neb the other day. I always get disappointed with new nebs. Apart from the Eflow Neb. I always think its going to be better looking or do something fancier, but they never do. They still always make a "HMMMMMMMM" noise, and still vibrate. Apart from the Eflow. But I needed a new one, and it arrived in about 3 days!!!!
I'm very excited about the new drug coming out which treats Delta508, which is the gene I have. I'd say it will be at least another year to be brought out on the market. At least.
Iv read that it costs about €280,000 a year for one person to be on it. That seems like a lot, and you will probably think that they won't pay it. So here's what I came up with. I'm not on that much medication, and the last time I calculated it up, my medication was over €100,000 a year. So if I'm not on that much meds, then a person with CF who is sicker then me will probably be on more then €280k a year. This new medication is two tablets a day. It targets the cause of CF and not the symptoms, meaning the symptoms will get better, lung function will go up, and potentially fewer hospital emissions, resulting in the health service paying less per person with CF then they would if they were not on the new drug. So in the long run, €280,000 is probably cheaper then the current average CF patient.
I ran a race yesterday. I was 2nd, and made a valuable mistake. I'm still not confident enough to realise I could run at a certain pace, and that will come with more races. It was a 10k race. I could probably count this race as my first proper race in 18 months. I ran one on Paddys Day, but it wasn't really a race. I wasn't fit and I was just arsing around really.
The course was very hilly. A two lap race. From 2k until 4.5k was uphill, and not an easy uphill (Is there such thing as going uphill easy?). On the second lap, the hill was from 6k until 9.5km. The leader went out at some mad pace, and I didn't go with him. I should have. My 5k split was faster then my Paddys day 5k race, and felt easy. I had to throw in a 4:43 mile to catch him. I didn't expect to do a time like that during it. It was a good race and I will take coming second as its a comeback.
We also won the county team. Im from Meath but run for Dublin. It breaks my heart every time!! So a gold amd a silver medal!!!
Onwards and upwards from here. Not sure when the next race is so more raining to be done!!!!
I'm off for a long Sunday run, and my legs are bloody killing me. I wouldn't have it any other way on my birthday!!!!