Happy No Year

It is the end of yet another monotonous year in my uneventful life. I will be glad when this year is over. However, I said that last year and the year before and probably the year before that. I want to try and make something happen this year, but it can't happen all at once or it will stress me out. I'd like not to start the year too crazy. Just for a laugh, I'm going to do a blood test on New Years' Day. Given the stuff I've been eating lately it should be very interesting. This year I'll turn 42 - that's supposed to be the meaning of life isn't it? Maybe it will be a good year? If life is supposed to begin at 40, I'm still waiting, not panicking yet, just waiting.

The Devil's in the Detail

I think it can be said that I can have good ideas. Yes, that's great, but I'm not very practical. Here is one of my latest, not very practical ideas. I would like to set up a pku, or special diets, meal delivery progamme. The food would look good (hopefully) taste good, be low protein and come with all the relevant nutritional information. There is a company in Scotland that does a similar thing. However, it seems to operate as part of a larger catering operation. The biggest problem in setting such a service up in Australia is one of cost. Low protein products are incredibly expensive here and you'd probably go broke before it got off the ground. But damn it! It's such a good idea! Having discovered the awful truth about people with pku not eating vegetables, something has to be done. So if the food is already made and delivered to your door, what could be easier? There has to be a way to set this up here. Maybe there is some sort of funding available, it is a one off kind of thing. I don't know. I'm starting to rave again.

The Sound of One Hand Clapping

'What is the sound of one hand clapping?' This is a question Zen Buddhism asks us, as a tool to totally open and cleanse the mind. It is supposed to have no answer. To those of us, however, who can 'clap' with one hand, there's no great mystery there, but I add it to demonstrate a concept. How about this one 'If a tree falls down in a Forest and there's no one there to hear it, does it make a sound?' What ever works for you. On Tuesday at my clinic appointment, I had such a zen moment, maybe it could be explained thus - 'If a vegetable grows in a garden and there's no body who wants to eat it, is it still a vegetable or is it a weed?' Now that works for me! Apparently there are people with pku ( I will assume these are adults) who claim not to like and therefore do not eat vegetables! My brain was blown straight to a zen dimension, completely voided of all other thought but 'How can this be? It's not possible. What's left to eat?' Five days later I still can't grasp this concept. Enlightenment surely can't be too far away! I wonder if I understood properly? Maybe I misheard what was said? Apparently these people have forsaken vegetables in preference for low protein products ie muffins, cakes, pikelets and anything in a packet or box that has come from one of the manufacturers of over priced lo-pro and protein free food alternatives. On the pkutree.com.au site I sometimes wage a little battle on what I call 'fake' foods. I thought it would created a tirade, it didn't. By 'fake' foods I mean things like lo-pro chocolate, cheeses etc. How about some chocolate milk for your pku child? This product contains neither chocolate or milk. Some believe that if they educate their child to the difference it will be ok - maybe it will. I do understand that parents don't want their children to miss out on things and are always on the lookout for suitable food stuffs that can be included to what can otherwise be a pretty boring diet. But what about the future? No one really knows what the effect will be as a child gets older and has to make his or her own food choices. I digress somewhat. These people who don't eat vegetables are doing all their own baking: bread, muffins etc and are always open to try a new lo-pro product. On these forums it is hard not to compare your efforts to those of others living with the same disease. I always feel that I come up short. I have been beating myself up a bit over this, as I do practically none of it. I can barely remember to buy bread let alone go home and bake some! I'm not going to feel like this anymore. Maybe this will be part of my New Years Resolution. Maybe it should be a new years revolution! Forget about fake food eaters, what about the no food eaters! Vegetables are supposed to be the main feature of our diet as people with pku, that's why it has been such a zen moment. I truly can't believe this. How much things have changed and so quickly! I remember as a child having a friend who had some weird disorder in which she couldn't eat vegetables and ate predominantly meat. When we discovered each others 'weirdnesses' we just stood and stared at each other in a total lack of comprehension - another zen moment! I feel something should be done about this situation. But what do you do? Where to start? I'm not even really sure what the issues are, maybe it's a lack of cooking skill, or a lack of nutritional information, fear of doing or eating the wrong thing? Who knows, I sure as hell can't figure it out. What we need is a so called 'celebrity chef' to produce a child with pku, a child who can hardly eat anything and then people in general might take an interest.

Dumbing us Down

Perhaps the most stunning revelation to come from my trip to Westmead last Tuesday came from the dietitian. Mary always seems disorganized and somewhat eccentric but I have never doubted that she knows what she's talking about. I would always trust what she told me and this came from her. The bar has been raise (or lowered, depends how you look at it) in relation to acceptable blood phenylalanine levels. Apparently it just too hard, so it's been made more achievable. Well excuse me if we find it hard. Boo Hoo!! Of course it's hard. At least someone's finally acknowledging that it is hard now, I guess. But how, exactly is this supposed to help people? Australia already seem to have one of the highest acceptable blood ranges in the world, so why make it higher? Are we all doing so brilliantly well, or do too many of us say we're 'fine' when the doctor asks us how we are? I for one know that my GP, who is still very 'hands off' in regards to pku will see this as another reason not to get involved. Suddenly a blood count that was once considered too high is alright, the thing is, nothing's changed, just a doctor's perception. I am quite concerned about the effect that this will have on individuals now and in the future. With all that we know now about the effects that pku can have on someone's quality of life, our hospital goes and does this to us. I see this as a step backwards in the treatment of pku.

On the road again, but off the track.

Last Tuesday I went on my bi-annual pilgrimage to the pku clinic. It takes so long and seems so pointless sometimes and that makes the whole thing a lot worse. I find it frustrating and for a long time now I have portioned all the blame on the hospital itself. However, new revelations have come to light that make me realize that they aren't necessarily the ones (solely) wasting my time - I'm doing it to myself. Example, I walk into the doctors office, Dr asks, 'How have you been? I respond 'Oh, I'm fine thanks.' or 'Ok, I guess'. However, I never elaborate. Let's get this into some sort of perspective - this specialist is not asking me how I am simply to pass the time of day, this is someone who is asking because they REALLY want to know! It's her job moron!! That's why she's a doctor and not a lawyer. Is this what's called a 'light bulb moment'? Of course I don't know what the symptoms and side effects of high phe levels are, I've never complained of any! Wouldn't want to waste anyones time now would I? This could simply be one of those things one puts down to experience except that I'm not fine. The doctor has written a letter to my GP saying that although she believes that I need to be back on anti-mad pills, my depression is probably not as a result of the pku and that a phe level of under 1000 is ok (for me) It's only when it reaches above 1400 that I will have problems. Problem is, I have problems now. See my problem? My blood test results for December were steady at 910. This is apparently now, OK. The plot thickens!

June 16, 2008

The PKU clinic is only held on one half day a month, in the morning. It makes it hard to get appointments and difficult to get there. They must be used to this though as a train timetable always seem available when making appointments. My appointment was for noon but the train wasn't due in until 12.03. On the way extra stations were added to the stopping pattern. I started getting clammy as I considered what to do. Getting from points A to B can trigger off an anxiety response in me. I calmed myself, saying that at least the train was heading in the right direction and still moving - I'd get there when I'd get there. On arriving at the hospital, I forgot what floor to go to, so I went to all of them. I walked in and the place seemed deserted. I was asked if I'd had a blood test recently, I admitted that I hadn't done one this month. I said that I thought that the last one wasn't too good. This facilitated a conversation about what was 'good' and what was 'bad' I admitted that when a result was 'good' ie on the low side, I felt encouraged, but when it was 'bad' ie high, especially if it was higher than I was expecting,I felt pretty awful and got depressed about it. I seem to internalize the whole process and blame myself - I take it all so personally. I need to find a way to channel all of that into something positive. Apparently it is quite common for people with pku to have odd attitudes to food, including the guilt thing. This stems from learning about food choices in childhood ie 'good foods' and 'bad foods' So 'good' and 'bad' need to be replaced in adulthood with ideas of what foods are better for my particular needs and which aren't. Visits to a psychologist have been recommended, some people have found it helpful with food issues.

June 15, 2008

I forgot to do a blood test this month. Tomorrow I have an appointment at Westmead, so there's not really point doing it now. I haven't been taking a supplement, so I think I may have to tell a little whit one about that. When I couldn't take the Lophlex I rang the hospital hoping to get a script for Phlexy-10. I couldn't get one here, seeing as though adults don't have pku, so I'm probably making it up or have miraculously outgrown a recessive genetic metabolic disorder. Having acquired the script I never managed to get it made up. So I think I'll have to fake it 'till I make it.