Tuesday, April 02, 2013


Its been an odd few weeks.
Firstly was the anniversary of Eva's passing. For someone who I never met, I am still in disbelief at the amount she touched my life and I often find myself thinking about her. It takes someone truly special to have that effect on people.

The day before Eva's anniversary, her friend Meg also passed. Strange that the dates would be so close. I related a lot to Meg. She had CF, but also had depressive streaks and often found herself abusing her body and lungs. But things changed for her. She had a little baby boy, who has not long turned one and she began looking after herself, seeing the wonder in his eyes kept her going. That was until her health took a turn for the worst and she ended up in hospital for a long time and unable to look after her little boy any more  It tore her apart and so she went back to old habits  She was trying to improve things, but sadly complications of her CF lead to her dying. Its sad, because that little boy will never remember his mum, I just hope that the family portray her in a positive life. And that, right now, her and Eva are rocking out some place  dancing and talking non stop, breathing easy.

I have had my niece down for a few days and although we didnt really do anything, the company was nice. I even had one of those laughing fits, the one where you cant breathe for laughing and cant stop laughing. As is usual with those types of laughing fits, it was over something silly and not even funny. We have a new couch in the living room, one of those where the foot rest comes up. I was went to get something and sat down next to my dad, but sideways. Suddenly I went flying back and mid sentence, I found myself sitting below my dad facing the celining. Turns out, they recline more that we knewm you just have to lean on it a certain way. But the shock of it happening and the look on my dads face, I was just in heap.

We also started talking to Mike again, my sisters husband. I dont think I have ever written much in here about him, but its an odd relationship and not one I feel like exploring right now. It went well and wasnt too akward, but I dont know how I feel about it yet.He is going to be doing some work for us and I dont think I will know how I feel until I reach a point where I end up alone with him. Its so long since I spoke to him and although he helped me through a rough patch, he was also a bad patch of it. Alas, I think it will be a very long time till I get stuck at that point, so for now I am trying not to worry about it.

Heamatology clinic went okay. Except for them having no idea why I was there and so I had to wait for nearly 3 hours whilst they sorted notes out. I am right, in that I will never outgrow my drug allergy as my doctors where hoping, however, there are alternatives that can used instead of that drug and so it should not be a reason against not have a port line fitted.

I also had chest clinic. Again, this went ok, though no real answers. I am exhausted all the time, even more so the last few days, so they are checking some things in my blood, but it is unlikely to come up with anything. At the time my chest was actully behaving, however, it once again feels like it is filling up this week. The amount of coughing I am doing, I feel like I am drowning, without going near water.

And that is pretty much it in my life. Exciting huh. Tomorrow I have transplant clinic, which I have no worries about as I know my liver works fine and such. Oh and I also have tooth ache again and my stomach is playing up. But I am once again putting it on a back burner. t-minus 6 weeks to London.

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