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.

The Patients are Revolting, so is the system!

I'm sick and tired of adults with pku constantly getting the rough end of the pineapple, the sharp end of the stick and generally being overlooked in regards to our needs as individuals with pku. Even parents of pku children don't always seem to get it. Newsflash - one day, all things being fair, your pku child will grow up and be a pku adult. I'd like to see a pku fundraiser, involving food in which anyone with pku attending could actually eat something there without having to provide their own. Or how about a pku group advertising their first meeting of the year as a 'brunch' to actually provide a low protein equivalent. We're talking a fruit salad and a tin of imitation cream here, nothing flash. Something that simple would help ease any feeling of exclusion that we all feel in many social situations. I am starting to believe that there is no organization that properly represents the needs of adults with pku. A national advocacy body aimed at education and highlighting the particular needs of adults with pku would be great. It wouldn't be to the exclusive benefit of adults, as there is obvious overlap in relation to access to special diet foods and government assistance. One day when I'm feeling a bit more sane I might look into that.

Anti-mads Revisited

My Dr was almost on time last week, so no sleeping bag was required for my evening appointment. I have been put back on anti-mad pills. This doctor will do just about anything if it is handed to him on hospital letterhead. I'm just the patient who's had the disease all their life, what would I know. The tablets are making me so tired that my arms feel too weak to hold things sometimes and I find myself sluring my speach a bit, but if they don't make me feel actually sick, I'll give them a go. There's just one thing though, the tablets contain Aspatame. So this doctor sits there with a 'just do it' attitude to diet compliance but then turns around and presribes me a medication with phenylalanine in it. You can't have it both ways. I found that I was too dopped up to be too angry about it. I've decided that as long as they don't make me totally dysfunctional, I'll keep on them, just to see what difference the extra phe makes on a daily basis. What the hell, I feel like crap anyway.

READ THIS!!

At the end of last year my GP suggested that I should keep a diary,to help track the pku I guess, or maybe it was supposed to be a food diary? I never quiet figured it out and he didn't seem to be able to explain it to me in such a way that made sense, so I ignored it. Itold him that if he or anyone else really wanted to know what I thought or felt and what my journey with pku is currently like, all they need to do it find this blog site. He wasn't interested enough to ask, or maybe he thought I was joking, people always think I'm joking, even when I'm clearly not. I think I need another GP. This one's now decided that he only works from 6pm -9pm and given he always runs hours late, I'm thinking I'll need to take a sleeping bag with me when I go on Tuesday. Oh Yes, he was one of the doctors who believed that adults don't have pku. I read something this morning that someone had put on the pkutree.com.au site from a Canadian site about a new enzyme treatment now undergoing human trials. The article mentioned how children need to be on a lo-pro diet and children this and children that, every once and a while there was a reference to teens but not once did the journalist mentioned adults or what having pku means in the life of an adult. People are more likely to be interested and donate money to anything that helps either small furry animals or poor sick little kiddies! I tried to remind a mother of a pku child once that one day her pku child would be a pku adult so that if us 'oldies' (anyone over 35!) seem to get carried away by certain things it's because we can see the writing on the wall, not just for us but for the 'sick little kiddies' in the future. We fight for things now so that others may have an easier future. Now I'm starting to sound like a political adfomercial! (I bet that word isn't in the spell check!) What stunt do us pku adults have to pull before anyone at all gets it? I NEED CAFFEINE! PS; spellcheck would let me have 'infomercial' but not 'adfomercial' I know what I mean and I like it. There's nothing quite like making up a new word!