Laying in bed having a little think to myself... Been on my laptop this evening looking over pictures of myself this past year and thinking back over everything! It's been like a rollercoaster . It's crazy how you think life can be going one way, then the next it's completely changed!
One photo album that popped up whilst looking through was my "funeral pics" I'd gone through the Internet picking out flowers and all sorts I began to plan it perfectly....yet now I struggle to plan a bloody wedding!
Can't believe I even thought about a funeral and now I couldn't feel more away from that time in my life!!
It's been such a crazy emotional year, didn't even realise how bad it had got, been thinking about it loads lately, must of put such a strain on everyone around me as well!
It scares me to think I would/could ever get back to that again, I think mentally it would be a lot harder to deal with!
As far as I know from reading up on people on kalydeco the don't seem to get any worse, so hopefully that's how it will go for me and I will never have to rely on oxygen and wheelchair again, time will tell, the only disadvantage I have is that I have been that low so my lungs already have been damaged so once all the crap has stopped coming up should find out what the situation is really, weather my lungs were mainly blocked with mucus crap or weather it is mainly scarring from infections.
Even if I get a good 2 years with my lungs like this il be happy then I can try the transplant root again. Just think I would be sooo nervous going for transplant again now. I received my clinic appointment letter high lighting everything that was mentioned etc and it said on there about going back on the active transplant list once I'm married...but I'm too scared And don't think it's the right thing for me! I know summertime is always the best time of year for me anyways so maybe see how I get on at christmas and then see what and how I'm feeling in January if things are still good then transplant isn't right for me yet, if things aren't good then it's back on the list I go. By January i will have been on kalydeco 6 months so long enough to see what the crack is!
God life is a confusing mess sometimes! Can't just be simple in my little world! And no matter what I decided there's always someone who doesn't agree or has an opinion on it! In the end of the day, it's my life and I know what's best for me and I'm sooo stubborn and never listen to what anyone's says anyways ;)
Iv already proven the right people wrong ;p
Had a good little day today, cleaned my gorgeous little house done all my washing and put it out to dry on the washing line in the beautiful sun! Then went over to the famalams for dinner and took our dogs for a walk to the park! Love the fact I could walk there and around and back without struggling or getting out of breath! Sooo good il add some piccys at the bottom.
Also to prove my sats are so good just done them and took a pic! Pulse rate is sooooooo low for me like I said before its normally at rest over 100! And sats were good at 95%
Thank god for kalydeco! If I could personally meet the people who invented the drug I would give them the biggest kiss on the cheek EVER!! Words can't express how much I love them! I hope there nice people as I only like nice people lol
That's all that's in sprogs head!
Love your comment, "I've already proven the right people wrong!" That's exactly how I feel about my daughter being on Kalydeco off label. Your great news just warms my heart. Love your smile and your upbeat spirit! So glad you are feeling better. Good luck with the wedding plans--you will make such a beautiful bride!ReplyDelete