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!

On the Merry-go-round of life

Today is designated the first day of Autumn. It is also the day designated as my blood test day, which I have just done, it took me two goes though, now my fingers are sore. My last blood test came back at 770. Ordinarily I would be thrilled, except for the fact that I feel so bad. I feel like my life is spiralling out of control and that at any minute it's all going to hit the fan, then fall in a stinking pile at my feet. Maybe I'd be feeling like this anyway. Once again I am very aware of the concept of being on a merry-go-round. Some things change but some stay the same. I have found that I am reacting to things in exactly the same way as I did maybe 10 years ago. I feel that the only reason I am coping at all is because I'm not trying to do anything - study, work, have a life etc It's quiet at the museum today and I'm not expecting anyone in. Today, in a fashion typical of this place, there is not one, but two separate events to raise money for the bushfire appeal, both held at the same time of course. At the movie club you needed to book in and it's an ordinary ticket price, the concert held at the club around the corner, is for a gold coin donation only. Maybe they could have worked together. The local council once again seems to be doing nothing. They gave 10, 000 dollars so feel they've done their bit. What about bringing the community together? This area is in the top three bush fire 'hot spots' (*no pun intended!) in the world. People here remember when this town was threatened by fire and Victorian firefighters helped us. People want to help and want to feel like they can do something. I can't help but to feel that the council is letting people down. I'm starting to get boring! Sorry! I wish I could think of some way of picking myself up a bit.

Pause for Reflection

Life can be so fleeting. In an instant everything that you knew, everything that you used to define your life can be gone. The bushfires in Victoria are both Australia's worst natural disaster and worst peace time tragedy. At time of writing, 181 people had lost their lives. I knew one of them. I don't wish to dwell on it as I feel a great need to leave it behind for a while. I'm feeling quite stressed and have that knot in my stomach that precedes an anxiety attack. It isn't just the fires though. I sense that I'm going to have a falling out with my mother. The whole day has a sense of foreboding about it. I wish I hadn't gotten out of bed. I have been trying to get my mother on the phone on and off all day to tell her about the death, but there is no answer. I wish today was over and I could go home. Sunday is the AGM of the PKU association and I've said I'll go. I've even managed to swap my day at the museum. I'll probably have to say something about the book project and I was hoping to hand out copies of the 'guidelines' then. I'd also said that I would write stuff for the newsletter. The deadline is coming up soon and I think I'm supposed to be filling two pages. I haven't finished it. I need to get my brain back so I can focus on next Sunday. I just hope I'm not feeling so stressed out by then.

Building up speed.

It has been ten days since I suggested I'd compile the 75th Anniversary book. I have just received my 17th offer of a contribution. With the odd stray (like myself) that I haven't added in yet, there is probably about twenty stories so far. It looks like this is actually going to happen, all I may have to do is point the ship in the right direction. I was asked today if I was going to go to the PKU Association's AGM. It's on at 10 am at Westmead Hospital. I would be guaranteed to be late and have no idea where to go once I get there, the place isn't referred to as 'Big W' for nothing. It also means taking another day off from the Museum and another day without access to emails and given I had 18 to wade through this morning, it's getting kind of necessary. However, I'm feeling that I should go. There are likely to be more pku adults there than I can contact via pku tree and I may be able to say something about the project in general business - assuming of course I have a clue what I'm actually doing by then. Crap.

The problem with ideas

I like to think that I have good ideas. Sometimes they're more trouble than they're worth. I mentioned on the pku tree site that I thought it would be a good idea to record people's stories, particularly the stories of us 'oldies', to record for posterity's sake the way it was when the effective management of pku was still in its infancy. This idea met with great enthusiasm by some people and ended with me agreeing to write/compile a book to commemorate the 75th anniversary of the discovery of pku. Four days ago this happened and today I find people wanting guidelines of what to write, urging that they need time to get their thoughts together. Guess what guys, I need time to get my thoughts together too. Something is always a good idea when it seems that someone else is going to do most of the work. I still can't get my head around the idea that I will actually be doing this. I find the stress of living so great sometimes. Hell, I can't even pay my damn bills, now I'm supposed to spend the next year doing this. At least if I do it there will be no one else to blame if it's crap. If someone else did a crap job on something that could end up being such a historically significant document, I'd be a bit pissed off. This is all on the same day I applied to be on a reality television programme. My agenda was to raise awareness about pku and special diets catering in general. I'm sick of being an after thought or overlooked all together, just the same, I hope to God I don't hear from them, after all, I have a book to write.