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.

May 1, 2008

On this day I did a blood test. The result came back as 900. Say no more.

April 2008

I meant to do my blood test this month but I kept forgetting. I am currently house sitting, where I am writting this. I need to get back to see my GP. I've heard that he's leaving the area, he still has my damn book. I wish I'd known that he was leaving, then I would have started trying to educate a different doctor. I'll have to start from the beginning with someone else. I think that at this point it's quite obvious that I am loosing any motivation that I may have originally had for this whole diet/ pku management thing. I feel so isolated here. I feel I have no support at all. It's so easy just to give up. This all seems like such a difficult thing to do, but I feel that it should be easy, a no brainer. I feel like my life and my health is just something else that I'm failing at. Or maybe it's because I hate myself sometimes? My next appointment at Westmead isn't until the middle of June. I really feel that I need to go out there more than every six months. I never say it though because these appointments are so hard to get that I don't want to take an appointment that could go to someone who hasn't been in for a while (I'm not sure that that sentence makes sense even to me!) I have to somehow get myself back on the wagon, as it were. I'll have another blood test on May 1st, I'll even post it in! I haven't lost any weight, I may even have put some on. My blood glucose level is acceptable, but I'm told that it shouldn't get any higher. The circumference of my ever increasing gut, is enough to suggest that I could be pre-diabetic. So what the hell and I waiting for?

March 2008

Did a blood test on the first. My results are all over the place, sometimes in the 400's sometimes the 700's. I sometimes wonder if the results reflect my mood? Sound a bit crazy really. I had organized to go back onto the Phlexy-10 supplement, it doesn't taste like my favourite cocktail any more than the Lophlex does but at least I know I can swallow it. I don't anticipate going back onto any supplement will be easy. I just have to make myself do it. So far I have failed to get the script made up, so I am still supplement free. Why do I do this? My GP still has my PKU Handbook. I wonder if he's actually read it? This month's blood test was 690. Quite pleased with that really!

January & February 2008

January 2008, When New Years' Day rolled around it seemed pretty stupid doing a blood test, so I didn't. February 2008, I did a blood test on the first but it seems to have gone missing, as no result was posted. Maybe I forgot to post it?

December 7, 2007

I couldn't do it. The mere thought of the Lophlex made me feel ill. What to do with the boxes. I shouldn't give up though. I'm such a quitter. I decided to have a go at the berry. I knew what to expect this time. I thought I was ready.. The reaction was much the same. My experience with the orange Lophlex had set up what seemed like a conditioned response. The trigger was not the smell, but more importantly the taste, or was it the anticipation of the taste based on a negative experience? I don't blame the Lophlex, many people swear by it. It's so easy, it's so convenient. Yes, but it's so vile. I wasn't expecting it to taste like my favourite cocktail, but I didn't expect that the mere act of walking past the box it arrived in to make me feel nauseous. I guess it may be back to the drawing board. This months blood test result was 780.

December 6, 2007

At 9 am there was a lock at the front door. I scrambled out of bed to find yet another courier on my door step. This time he held a clipboard for me to sign for the very large box of Lophlex he was keen to off load. He asked me if I wanted it put anywhere in particular. I suggested that just inside would be fine. I looked at the box with some dismay. I tried to move it. I was too heavy to lift. No wonder he seemed so keen to get rid of it. I was still in some degree of shock from the orange vomit incident, so the thought of ingesting that stuff any time soon was incomprehensible. It was all too much first thing in the morning so I had a cup of coffee and contemplated the situation.

December 5, 2007

Late this morning, I opened my front door and found a box sitting on the porch. I thought I had to sign something, apparently no this time. The box said that it contained tins of soy infant formula. That is wrong for so many reasons I didn't know what to think first. The box also proclaimed that the company had been caring for babies since 1896. That's just wonderful, really. I'm 40, live on my own, have no 'significant other' and certainly no soy drinking infants - poor babies! What to do. I considered not opening the box and getting on the phone to them, but that seemed too hard, so I opened it. There, packed lovingly, swaddled in bubble wrap, lay two sample packs of Lophlex. I felt like a bit of an idiot, good thing I didn't ring them up. Just think, if I'd opened the door to the courier, I probably would have sent it straight back. After some chilling in the fridge (of the Lophlex, not myself) I stood in the kitchen, eagerly clutching an orange coloured sachet. I figured that orange was a good place to start, since two of the three boxes were full of the same. I carefully considered the sachet and it's contents. I remembered a friend sating of a previous supplement that it smelt like someone had thrown up after eating oranges. Not very helpful really, as I was trying, with a lot of difficulty to take a supplement after quite some years. It became known as orange vomit, or that orange vomitty stuff in the jug. Today, though, I was both nervous and excited, similar to the nerves one feels when about to meet your best friends' new boyfriend - you so don't want to hate him. He doesn't have to be your best buddy, you just have to not hate each other. After all, you already have something in common - your friend. Clutching my new companion in my hand, I opened the top. For goodness sake, don't be tempted to smell it. Whew, that was close!. Well, it looks like a sports drink, so how do you drink a sports drink? Just squirt it down your throat, right? Let's just say that the results were instant. Running for the kitchen sink every last bit of orange vomit came back. The squirt may have been the problem. I have a dreadful feeling that orange my have run it's course. Once I've collected myself I'll have a go at berry. Berry is the other box being delivered, maybe as soon as tomorrow.

December 4, 2007

I have spent the day waiting for the courier and craving meat. I've started skipping breakfast again, well skipping isn't exactly correct, it's more like forgetting to eat it. That's probably going to have to change.

December 3, 2007

Today has been pretty ordinary really, except for the fact that I started to crave ham, not a whole pigs worth, just a few slices. Can I blame the pork rashers? This is exactly what I meant by knowing when to stop. It took me a while to figure out that these were actual cravings. Some people a addicted to alcohol, some to cigarettes, with me it seems to be meat. How nuts is that? Maybe this will change when my new supplement arrives. Hopefully it might work like a nicotine patch! Speaking of supplements, I am expecting my first delivery of my new stuff, Lophlex LQ. I'm a bit nervous about it, because let's face it, I don't really have a good record. I'm being sent some samples so that I can try the different flavours, the three boxes of Lophlex should arrive by the end of the week.

December 2, 2007

There was one, probably rather important detail that I neglected to mention about my blood test days, I try and be really ;'good' leading up to the day and then when I've had the test, I tend to 'reward' myself with food - a cross between a treat and a celebration. But sometimes, like all celebrations, things can get a bit out of hand. It can be hard knowing when enough is enough. I like to think that I have a certain amount of self awareness. I know that I'm a bit nuts. I know that I'm dysfunctional and I know that sometimes I do things with my life and my diet that are counter productive. It is believed to be an evolutionary development in human being that we crave the foods that our bodies need (I don't know what this says about some cravings that women can get during pregnancy though!) Having discovered this little gem, I decided not to beat myself up about higher blood test results and I'd even give in to some of those evolutionary cravings! Particularly since I haven't been on a supplement. The true test may come when my new supplement arrives. So last night's dinner consisted of the following - Two pork rashers (I don't even like pork that much) with roast vegetables. So I got heaps of protein and heaps of fat at the same time. Cut the fat off? Are you joking? The fat is usually the best bit. I remember telling my doctor at Westmead once that I loved lamb fat in particular. I was told that I could eat the fat but should leave the meat. No one's saying it now though! Today I am experiencing a degree of what I think must be guilt. Not 'get thee to a confessional' kind of guilt, but rather 'I really shouldn't have done that' kind of guilt. Now don't misunderstand me here. I am not feeling guilt over the protein explosion that I so eagerly ingested, but rather the fat. I must have chosen the fattiest kind of meat I could find. The really sad bit is that there is more of it in the freezer. Oh, well, it will keep for another blood test day! No wonder I'm fat and crazy!!

Happy Birthday!!

I originally started this as a journal on December the first 2007. I had considered making a documentary instead. But lets face it, my life is pretty boring! Doesn't stand up to too much investigation! I was going to do this for one year. Here it is! But nothing interesting has happened. You can't end on an anticlimax, so here I am - still. I was trying to think of smart ways to include some of the original journal entries and I can't think of any 'smart' ways so I'll just whack them in. There is one already here called Journal entry one, or something fascinating like that. Stay tuned for the next wonderful installment....

A Picnic for One

Well, I made it to the picnic. The day was warm and I managed to get sunburnt. At one point I was even offered some sunscreen and turned it down. Burned and stupid! It took me over three hours and needed three trains to get there (one more than I'd bargained on) I arrived to find people scattered on the ground, on picnic blankets and on chairs. I think I was the last to arrived. It was good to meet up with people I'd met on the pku tree forum, apart from that it felt a little alien. I sat back and watched others until I got myself together. I had a flashback to childhood and all my issues with food. When I started school I was going to ware a school uniform and look like everyone else and I was going to eat sandwiches and therefore BE the same as everyone else! I had probably discovered that sandwiches were the food of choice at 'big school' from my next door neighbour who was a year older than me. We all like to think that we're individuals, but deep down we all want to be accepted and to fit in. My mother had gone to great lengths to assure that I got to eat those two slices of bread 5 days a week. I had never had 'normal' bread before and the low protein alternatives available at the time were pretty shocking. But then it happened... I came home in tears. 'What's wrong?' 'Simone hated my asparagus sandwich.' This was serious stuff! Someone, had laughed at my lunch and said it was yuck! My mother asked me if I liked asparagus sandwiches, which I did, so she surmised that it didn't matter what Simone thought about my sandwich, let her eat her boring Vegemite one. It was OK for me to like what I liked, I didn't need Simone's approval. So back to the picnic... I had put a fair amount of thought into what I would take to eat at this picnic. I'd done a pretty fair job, all things considering, but it was as though Simone was looking over my shoulder waiting to see what disaster I had packed. 'You're not seriously going to eat that are you?' Maybe not. How about an innocent question about the protein content per serve. I felt like the world was sitting in judgement over what I would pull out of my backpack = which they weren't. I eventually got over myself and ate my lunch - I even shared it! I was told how organized I was (obviously doesn't know me!) It wasn't a bad day and I ended up being glad that I'd gone. I got to the railway station with one minute to spare. It would have been a two hour wait if I'd missed it. Now that would have pissed me off, sandwich or no sandwich!