A jounal written by an adult with the rare genetic disorder, PKU, approaching middle age and struggling with issues of diet, weight gain and the propect of diabetes.
Wednesday, 5 November 2008
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.