"Let's Do Lunch"

I have been think of adding restaurant reviews to this blog site. I haven't got too far with adding in recipes so what about reviews? I want to but together a group and call them the Lunch club. I know it sounds a bit cucumber sandwiches and cups of tea but it was the best I could come up with. Let's face it, just having one extra person means you can double what you order off a menu, so a group of around 4-6 would be ideal. We could start locally and work our way down the blue mountains! Once I have recruited some willing diners we might be able to start up in the new year!

Finger Crossing

Tomorrow if the PKU Christmas Picnic. It has been raining on and off for a while now, and everyone is hoping that it will be fine on Sunday. I want to go so that I can meet up with some of the people I have met through the pkutree forum. I'm feeling sick at the moment and I feel that the greatest challenge from the day could come from how I feel, rather than from the conditions. I came into the museum today because I made a big deal out of the fact that I would - yes, I have a toothache, but don't worry, I'll go in regardless because I said that I would. That sort of dross, so here I am. If things don't pick up here soon I'll leave early. I did nothing yesterday, so have everything to do and organize today if I am to be on the 7.36 am train. The picnic is being held at Olympic Park (at least it's being used for something I guess) but there is absolutely no shelter. Doesn't sound like the best venue to me. There are probably no seats either, will have to pack a plastic bag to sit on! It's sounding great isn't it? Can't wait. Truely. I'm looking at the space here and thinking that this would make a good venue. Shade if needed, chairs if needed, indoors if needed and space to run around if needed and an old steam engine named 'Possum' to climb on. Sounds perfect. Next Wednesday is International day for People with a Disability (can't call them disabled apparently as it puts the disability before the person) We are have a bus load of people arriving and a host of stuff happening. It has all been organised at the last minute. Maybe we could convince council that it is in their best interests to let in a group of pku kids and adults for the day - good publicity etc. I'll see how it goes.

'I have a Dream'

'I have a Dream" I said that to a friend once, who then told me that the last person who said that got shot. Depends on the dream, surely. I am being inspired by the ideas and discoveries of others. discovery 1 - there is a place somewhere in Scotland of all places (love ya Scotland. My mum's a Ferguson, after all, or maybe one shouldn't admit to that !) Well, this place produces pre-packaged pku meals, or at least that's my understanding of it. Imagine getting all your dinners for the week delivered to your door! No counting protein, no stressing about being 'good' or' bad' just open the freezer, pop it in the oven and there you have a meal you didn't have to prepare and don't have to feel guilty about! discovery 2 - open a pku restaurant. Not on the surface a very practical idea, but how about a vegetarian cafe/ restaurant that caters to special diets. Menus could have a nutritional rating system, listing protein, fat, sodium, GI etc. I really don't believe that an adult going out for a meal with friends should have to order chips off the menu, for lack of any real options. If you want to order chips and salad all power to you, but you should have a choice. Not far from where I live, a 100 year old church is for sale/ rent(?). It's sanctuary area is like a simple stage and the congregation would have been sitting on tiered seating (no sleeping during the sermon 'coz you'd be seen!) Downstairs, is another open area and another stage and a fairly large, well equipped kitchen, two stoves, two entrances and plenty of bench space. Can you see where this dream is heading? The restaurant as described. Good food, good service, live music venue (downstairs) How about Sunday brunch at the church? Upstairs, touring stage shows of a better quality than the local musical society offerings with removable seating to make way for an open exhibition space. There is yet another storey up from this that could be used as an office. Operating separately, under a different business name, would be the prepared meals bit. There are a few small rooms near the kitchen that could accommodate freezers. I figure that this type of business might generate grants or subsidies of some kind and would undoubtedly operate at a loss. But it's such a good idea! What's stopping me? Money. I don't seem to have $400,000 (for the business alone) I've always said that I'm an ideas person and don't have a practical bone in my body. For a little while the thought of this was exciting. Just thought that I'd share. Note to self, buy a lottery ticket!

Downwardly Mobile!

I have been anxiously waiting the arrival of my latest test results. Every time they arrive, I sit down and brace myself, usually for the unexpected. This time I was expecting it to be even higher than the last little effort of 1140. Given that about 700 should be my limit, it's no wonder that I often feel a bit weird. It arrived the other day. Drum roll please. 910. To my way of thinking, that's a fair deal lower. Never was too good at maths though! The anti-mad pills that suppressed my appetite and made me feel sick may have made the difference. The difference being that with next to no appetite I don't crave food that I shouldn't eat, it's hard enough to eat at all. If I took something for the nausea I could go back on the tablets. Then I'd just have to deal with the fatigue and lethargy! Why does life have to be so damned complicated sometimes?

Blah

I'm thinking that I should have cancelled today. I'm in at the museum today, I felt that I needed to turn up, I thought that we were going to have a long over due meeting - we're not. My mother is sick today so couldn't drive me in, she rang me as I was about to leave the house. Waited ages for a taxi. Hope I don't have to catch one home. Cost ten dollars. I stayed up late watching garbage on TV, serves me right. I'm tired. I have a rash under my chin and on my right arm. It's made worse by heat. It's a hot day. Is it eczema? Mine usually isn't itchy. I didn't remember to get my usual gluten free, vegetable rolls for lunch, so I brought in something naughty - Spag bol. I'm thinking it might be too hot to want to eat it. Tough luck sister. My work mate could talk under water I wish she'd shut the hell up. I've told her that I don't feel on top of my game today, but still she talks. Today I'd like to close my eyes and wake up somewhere else. Or maybe I could simply close my eyes, wake up and discover that I'm home in bed. Beautiful!

Crawling onto the wagon

I'm trying to be good, really I am! Maybe if I say it often enough it will start happening! Fake it 'till you make! Maybe I need to find a sensible way to do that! I've just been inspired to have some Phlexy-10. I haven't had it for a while. I need to get back on that particular horse. I don't know why it is that I seem to feel that I've finished it by the time I get to the end of the first box. Only six more sitting in the lounge room. I seem to keep finding out things that I have never heard of before. This time it's the phenylalanine to tyrosine ratio and how this is important. I could probably guess at why I just can't figure out why I need to think about it. If I'm (let's imagine an ideal world) taking the amount of supplement that I should in fact be taking, then wouldn't it follow that I would be ingesting the right amount of tyrosine? Why don't I know this and why have I never been told?? This stuff is really starting to piss me off. Why does that wretched adult pku clinic exist if it isn't giving out basic information? When I asked about pku and diabetes the response was 'don't do it, don't go there it's just too hard.' That suggests that there is information obtained from others who have developed type 2 diabetes. Maybe not, maybe the statement comes from the knowledge that these two metabolic disorders are largely incompatible. Now, however, I'm not sure. I told my doctor the other week that it seems that people with pku and high phe levels can have bad trouble with their sinuses ( a recurring problem of mine) He contradicted me, but then quickly added "I'm not saying that you're wrong, I'm just saying that I've never heard of that." And there you have it. This was one of the doctors that had decided that adults didn't have pku because he'd never come across one. Guess what mate, you have now, so get over yourself.

Don't get even, get mad.

'I'm as mad as hell and I'm not gunna take it anymore.' That's what the film Newsfront encouraged us to do in the 70's. i have been doing some research on PKU on the net and listening (or at least reading) about the experiences of others with PKU and have found that there are a host of 'symptoms' and side effects of high phenylalanine that I have that I had always fobbed off as thinks peculiar to me. It would seem that some of them are fairly common to PKU. Headaches (hello!) anxiety, depression, poor short term memory even a degree of pain from nerve endings. The depression comes them the fact that with PKU the body can't produce Tyrosine, which is needed to produce dopamine in the brain. The nerve pain probably fromt he fact that high blood phenylalanine levels effect the central nervous system. It's been known for some time that I suffer from depression and anxiety. I was never told that this was normal given the circumstances. I have been left to believe that these things were just part of me and not necessarily part of having PKU. Why wasn't Itold? At the PKU clinic they chastise you if you don't turn up regularly, but they don't really give you much incentive to. I start to wonder why I bother at all, given the total lack of input from them. On a lighter note, I had some blood tests done the other week and it turns out my blood sugar is good at 5, my vitamin B and D also good and my cholesterol good. So there you go. All this pent up pissed-offness has served to motivate me to be better with my diet - ironic really. Let's just hope that my lack of appetite hasn't pushed my levels up even higher.

One foot on a banana skin

Well, the year is nearly over. I think I'm starting to at least try and be 'good'. My last blood count was 1140 and I wouldn't be surprised if this time it was higher still. I have been put onto a different lot of anti depressants (commonly called at my place, anti mad pills) The fact is I feel so sick that I wouldn't know if I'm depressed or not. Nausea, dizziness tiredness are just the beginning, but it is the loss of appetite that could be sending my levels higher. Some of the side effects are very similar to PKU. So if I already have phe levels that are too high, is it smart for me to take a drug with side effects that are the same as having high levels of blood phe? I don't know what's causing what. I have also recently been diagnosed with cluster headaches. The tablets for which seem to make me tired and sick. The long and short of it is that I don't know what to do with my diet. Should I eat lower protein foods because my blood levels will rise or should I eat higher protein foods because I'm not ingesting enough phenylalanine? I decided to try and eat less protein. I guess I'll know soon enough if it's worked.