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!

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.

Fear and Loathing

"What's my motivation?" the actor screams. I don't know what it is now, but I think I now what it used to be - fear and loathing. Sounds dramatic doesn't it? I used to be a member of a religious order - no seriously. For four years. In many respects the longest four years of my life, but I don't regret it, I guess it was something I had to do. For a nember of reasons, it's a time of my life that I don't talk about much. It was during this time that I started having panic attacks. I hadn't been a Novice for very long, so I just assuming that I was having doubts about the whole vocation thing. Whatever it was I thought that I was losing whatever was left of my mind. Being a Novice in a Religious Order meant I told nobody anything. I was expected to be reasonably healthy in both body and mind. I felt that I was loosing both. The Community had some weird attitudes towards food, everything was designed to make you harmogenous, invisible, self-affacing. You didn't like standing out in anyway, even when you were received as a Novice into the community. It gave you the appearance of being modest and at the very least, unselfish. It was never about you, it was always about someone else. Some of the food stuff went like this; you cooked simple yet healthy meals. Most times of the year two courses were served, a main and a dessert. You ate everything that was provided regardless of personal preference. You hate it, tough luck Sister. The exception to this was if the food was 'medically harmful' to you. I didn't figure that I fitted into this category since the food itself didn't make me 'sick'. I was totally off the diet and hadn't taken a supplement since I 'graduated' from the Children's hospital. When I was on holidays in Sydney I got myself back to the hopital, saying that I thought that I was having panic attacks. To my suprise, no one questioned my self-diagnosis. My blood phenylalanine level came back at over 1400. I had discovered that the saying 'no brain, no pain' doesn't really follow. All of a sudden I was standing out and not for a good reason, but it did exempt me from the over cooked Friday night omlettes! Others were kind of jealous, I was kind of relieved. I was terrified of having to go onto low protein food substitutes if I couldn't get my levels down on my own. These products were always expensive and I struggled to see that the Community would be too happy to fork out big bucks on a packet of dried pasta and baking mix! Getting back onto the supplement was the hardest, that coupled with the constant hunger. Hunger like a gnawing pit in your stomach. I ate anything and everything that didn't have an animal somewhere in its DNA chain. I felt the need to apologize for this. At the time we had a Novice from another order staying with us who was a compulsive eater. Strict limits were put on who could eat what and when. I had free reign on the kitchen, others had to wait for designated meal times. I felt I needed to apologize for that too. For over two months my blood count stayed the same. I started to fear that the low-pro foods were around the corner, but then there was a shift. In the end I got it down to an acceptable level, almost half what it had been. I should be proud of this milestone. I have had reason to examine this time in my life and I was wondering what my motivation was. One word kept coming to mind - fear. When I realized that my mind was being affected, the fear gripped me like a vice, for even if I kept it together long enough to be Life Professed I may still ended up dependant on these women and I'd seen the way some of them had treated older sisters. One sister in particular gave us the creeps and the thought of being in any way dependant on such and emotionally stunted, objectionable person was truly horrific. So I sorted out my diet and got onto the supplement. My distaste for this person was my motivation. My distaste for her was greater than my distaste for the supplement! That's saying something. So there you have it! Fear and Loathing. Now if I could only find something else to hate as much, then I'd be set!