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!

"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.

Fractured fairytales

I feel myself unravelling. I wonder if the way I see the world and my fractured place in it, is an accurate reflection of reality. My last blood test came back as 980. I thought it would have gone down, not up. I'm tired but can't sleep, hungry (sometimes) but can't eat. I start to feel that the world would be better off if I wasn't in it. I was doing great with the Plexy 10 until I reached the end of the first box. It seems to happen that way. It's like I feel that having finished the box that should be it. I can't handle stress but everything seems to be stressing me out. How do I stay motivated to stay on this supplement and diet if I don't give a rats about myself? It's a vicious cycle - I need to be on the supplement in order to feel better about myself but I need to feel better about myself in order to stay on the supplement. To voice the actors lament, 'what's my motivation?' I have no children, no 'other', significant or otherwise, in fact I hardly have any family at all. The motivation has to come from somewhere inside me and let's face it, sometimes it just aint there. I used to think that a slow decent into madness would be a bit like Alice's trip to Wonderland (I use the word trip deliberately, as there is an opinion that Lewis Carol was on opium when he wrote it, explains a lot really) However, it hasn't been a day dream to an exciting fantasy land, but one of anxiety and some despair. It wasn't until I developed an anxiety disorder that I realised that my happy slide into crazyville wasn't going to work out like that. Just another unfulfilled dream I guess. Fairytales are supposed to start with "Once upon a time" and end with "And they all lived happily ever after." This one hasn't, so far. At least Alice had Wonderland.

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.