PKU Journal

August 27, 2007 - Blood phenylalanine levels for this month were 720. I'm quite pleased with that. October 22, 2007 - Blood test results for this month were 920. I'm pretty bummed out about that. December 1, 2007 - Today is the beginning of the rest of my life. how many times have I heard platitudes like that? I'd love to be able to start each day by looking in the bathroom mirror, recanting the mantra and actually mean it. How about 'Fake it 'til you Make it' Is the brain so easily tricked? Having PKU is something I've largely been able to ignore as an adult, but now it feels like it's coming back to bite me. As the title suggests, I have recently turned 40. I am also overweight, have PKU and now have a family precedent of type 2 diabetes. Last week I went out to the PKU clinic at Westmead hospital, my first vistit in four years, or so I kept being reminded. In fact it had been so long since my last visit that my file had been sent off to some warehouse. Oops! It appears that there is no information available on PKU and diabetes ie adults with PKU developing type 2 diabetes and the management thereof. I can't accept this, it just can't be right. It has to be out there somewhere, right? Into the bargain my GP has been labouring under the misconception that adults don't in fact have PKU at all. Babies, yes. Children, yes. Adults it would appear not. Am I supposed to have died when I turned 18 or should I feel cheated that I didn't managed to somehow grow an extra liver enzyme? It's like saying that I can wake up tomorrow morning with different coloured eyes. Anyway, the GP consulted with an equally uninformed colleague and a dietitian, neither of whom (surprise surprise) had come across an adult with PKU. Therefore, they were all right and I the stupid patient must be wrong. I'm still not quite sure why I didn't get up and walk out right then. Since I have been to Westmead, however, he is starting to change his mind (since another medical professional has confirmed my diagnosis. He even asked if he could borrow my PKU Handbook, which I took as a good sign. The handbook is very general and he'd probably be better off Googling PKU instead. I told him what had been discussed at Westmead ie weight loss, diabetes etc and that there doesn't seem to be any information available. He might have a better time Googling it than me, I don't know what the hell I'm doing. I asked 'shouldn't I get on the scales or something?' He agreed but said that he didn't want to ask me. Was he trying to save me the embarrassment? They told us that I am about six kgs over weight. I'd just finished telling him that I thought I'd gained between 15-20 kg since arriving here. One of us in the room is definitely deluded, my money's on the smart looking scales - good looking but not too smart. I decided that the first of each month should be blood test day, that should be easy to remember even for me. I don't hold out high hopes on a good result, given I've been sick with what I affectionately call a sinus migraine - feels a lot like a migraine but in your face and ordinary headache tablets do little to move it. This means that I haven't been eating much, but having decided that today was the day I went ahead anyway. Just think, this time next month it will be a blood test on New Years day. Now that sounds like a bit of a dumb idea.

Recipe 1

STROGANOFF SAUCE Ingredients; 1/2 Onion button mushrooms, sliced 1 tablespoon butter/ margarine 1 tablespoon flour 1 tablespoon tomato paste 1 1/4 cups chicken or beef stock (see note) 1/2 cup sour cream. Method; Saute mushrooms and onion in margarine. Add flour and cook over medium heat for about 2 minutes, stirring constantly. Add tomato paste and stock. Stir over medium heat until mixture starts to thicken. Remove from heat and add sour cream. Heat through. Serve with vegetables or pasta of choice. NB. The stock I use is Massel Ultracube. They taste pretty good and contain no animal products.

Eureka!

I FOUND IT!! I've just managed to find my blog site for the very first time! It really is out there, somewhere in cyberspace! I am being very good now (well better anyway) in relation to supplements and diet. But there is nothing out there to motivate me to do the right thing by myself. But if I don't give a stuff about myself who else will? I started keeping a journal of my dysfunctional journey on December 1 last year, just after I'd been to Westmead (hospital) Finding no information that seemed relevant to my concerns I decided to create some, but as I have demonstrated, at least to myself, is that cyberspace is a big universe and I have bad direction. In cyber space they can't hear you scream. I have been trying to figure out a sensible way to add those journal entries. I can't find a sensible way so I think I'll just start putting them in. I have also decided to start including some recipes. This will help me start focusing on what foods and recipes might be suitable. Living on my own I quite often simply can't be bothered, so some of these recipes will come from my if I could only be bothered (or had a cook and a maid)wish list. Some of them I've actually cooked and know that they work. Please don't take my word for anything. I don't pretend to know much of anything, so if you like an idea but are not too sure of it ask your dietitian, who will either say 'Great idea where did you find it?" or 'You'd have to be joking, don't touch it." Hopefully it will be more of the former and less of the latter.

Blogging for Morons

Maybe techno-cripples such as myself a not supposed to have blog sites. I have not once successfully managed to find this site eg if I didn't know where it was I'd never find it. It simply doesn't seem to exist. Maybe it's been sucked into fat air! I'm feeling that I may as well sit at home and talk to myself than do this. Each time it's a new challenge. I know that the first time I type it in and it appears like magic I'll be stoked. So, I guess I'll keep doing this until I figure it out. Hello, is anyone out there?

The Journey of 1000 Miles Begins with a Single Step, so the Chinese philosopher told us. I like to think that I have taken that step. I like to think of myself on a path heading in a certain direction but sometimes I don't seem to know where that is. My last blood test results came back at 890. Yes, it's high but not as high as you may think. I was once told that it seems that I have a high tolerance for phenylalanine (given I can't metabolize it!) so a result of around 700 was OK. Less would obviously be better I guess. On the first of the month I do my phe test. I think from next month I will also do a fasting blood glucose test just so there's a record. I think I have put on more weight. I thought I'd cheer myself up last week by buying new clothes from a department store, rather than from an op shop and had to take a dress back saying 'super size me' . I purchased my first size 16 garment. Things are getting serious. I bought myself some fake sugar the other day to start replacing the shovels of sugar I heap into my coffee. I'm hoping it will help cut back on calories and help the blood glucose level, which is still OK. Here's hoping. I will now attempt to post this blog. Patience is a virtue (so I'm told!)

An Introduction to this site. One wouldn't need to be a rocket scientist to have already figured out that I am 40 years old (well, just turned 41 now), am overweight and have Phenylketonuria. about two years ago my mother was diagnosed with type 2 diabetes. Already being a little overweight and reaching the top of the hill, it didn't take much for me to figure out that the top of the hill could be followed by a slippery slope - over the hill and gaining speed! I made an appointment at Westmead hospital, where I have my biannual appointments, in the hope of finding out some information. My attempts at searching the Internet had proved somewhat useless. The hospital could tell me even less. With advise like 'It's too hard, just don't do it.' I felt none the wiser. everyone agreed that I needed to loose weight, no argument here. No one weighed me. Ironically I used to be underweight and at one stage was 2 kgs of being technically anorexic. They all weighed me then. apparently the inability to keep weight either on or off is quite a common problem with PKU. Wish I knew that a few years ago. This general lack of information is the main reason for this site. I don't have diabetes but I don't quite not have diabetes either. hopefully I won't, but this is the journey one way or the other.