Off the starting blocks, with a long way to go.

I received the first response back for the book project and it was really great! If more people send stuff like this, the pku book is going to be outrageously good! She even sent in a photograph in case I wanted to use it. Seeing that toddlers' face looking up at me from that photo makes it that much more real. I'm still sending out the guidelines and having problems with some of the email addresses. Maybe the problem is with the attachment? I have no idea so will just have to keep trying. Technology frustrates the hell out of me. Who the hell came up with the spin that it makes our lives easier? Yeah, until it stops working and you and your computer geek can't figure out why and then you have to pay another computer geek who tells you he doesn't know either. That's just great. I'm going to print a copy of that photo and put it near the computer to help remind me that this is real and it's happening. And to remind me why.

Confessions of a cheating twat.

There, I've admitted it. I've been cheating on my blog. I'm not proud of it. Cheating on my loyal and faithful blog and for what? Quickies on Twitter, shame on me. I know it's just you and me here, no one else gives a stuff and I don't care. On Twitter you're a whore to the world but still no one cares. It can hardly count as a valid form of communication, can it my pretty? When I found out my blood phe had gone up two months in a row I got pretty down about it, still am I guess. I know I have a touch of the blahs again and shouldn't make rash decisions or say things I may or may not regret, but I'm tired, depressed and a bit pissed off with just about everything. The adults' Advocacy group is shaping up to be a real pain. It was set up as a direct result of an expressed need by PKU adults. If I hadn't believed that a need existed and a group of this kind was wanted, I wouldn't have bothered. I am getting criticism from some, for even having the idea. I'm told that other groups exist to work for the needs of people with pku, therefore PAN is redundant before it even gets going. I think I'm supposed to 'see the light' and come into the fold. The fact remains that if adults with PKU are still struggling and are still feeling that they lack a voice, it doesn't matter what any particular group has done in the past. It still seems to me that there is a need. But could I really be bothered? I don't need the extra hassle and stress at the moment. I was foolish enough to think that we were all on the same side and should be able to work together. What an idiot I am !! What happens to people once they join a group? I find it personally disappointing. There, my blog, I have unburdened my evil inner being. I've missed you. Let's not fight again!

Back on the Round About?

My blood phe has gone up. My test for April came back as 840, that's up from 730. Current 'wisdom' would tell me that this is still an acceptable number since it's under 1000. Like Hell it is! I can't say that I'm suprised that it's high though. there were those wretched anti-mad pills and I guess I slacked off a bit. Gee I need to find a new doctor. I've started sending out the letters about the adult group, I got a response back from one today. You know the sort of response, 'Oh, yes, thank you for bothering but that's not my department, not my concern' that kind of thing. Well mate, I'm here and I'm making it your concern. I won't be fobbed off. If being 'nice' isn't going to work (and I've been told that it probably won't) well, I'll just have to get more officious. The other way is so much more pleasant for all of us though! Sent two more today, one to the prime minister and one for the federal health minister. I'm sure these people don't know what to make of someone not actually wanting anything from them! There's plenty of time for that, let's at least start out in a positive frame of mind and see how that goes.

Introducing...

Still not feeling sane but did it anyway. The PKU-adult Advocacy Network (PAN) is off to a smewhat shakey start. People are supportive of the idea but I wonder what will pan out (no pun intended) I started sending out 'letters of introduction' simply to find that people are having difficulty openning it as an email attachment. What next! I'll probably need to start faxing them. Some people are full of enthusiam with no real vision of how they are going to get stuff done and others are so full of ideas I never stop hearing about them! I feel that nothing I do will be right, or good enough. Maybe that shouldn't matter. I think I just have the 'blahs' today, I'm not feeling well, I could even convince myself that I have swine flu. I'm thinking of calling a taxi and going home. Today sucks.