New Blog

New Blog

Avatar of Timothy

New Blog

June 21, 2010 in Uncategorized

Anyway I tend to be fairly inconsistent at blogging, and I tend to ramble with my thoughts a bit, but here goes. I have PKU, and I never really got into it. It seems to me that so many people online discussing it here make it such a big part of their life that I don't really feel like I connect with anything of the sort. I tend to only look up stuff about PKU when it gets in my way. I have viewed it in my life as merely an annoyance. At the same time, I follow the diet, drink the formula, yadda yadda, and it really doesn't bother me. I don't understand everyone who has such a hard time doing so, to me I just think of myself as a vegetarian, and roll with it. I really enjoy reading and participating in health and wellness diets/activities anyway, so its just another reason. I recall being asked by a gene therapist if I had "cravings" for meat a few years ago when I decided to get back on the diet, acting if it were going to be unable to actually stop myself, or was so weak willed that I couldn't actually make the decision not to eat meat on my own and go through with it. Anyway they tested my IQ having been off the diet, and it hadn't changed, neither did I really show any particular symptoms that I am supposed to have had. I was taking the formula at the time which really may not have accomplished all that much since the supplemental tyrosine would also be found in cheese, milk, meat, and nuts, or seeds. So it seems that I was unable to see firsthand the toxicity effects of the phenylalanine, I recall having participated in a study that had similar results in my case, although it only took place for a few months iirc. (I also recall that there were more individuals than myself who could say the same however my clinic was moved as a political attaboy by my beloved governor, and I lost contact with them) So why am I on the diet? Maybe I was bullied into it by the scare tactics of the gene therapists, (half kidding although I haven't had a very good experience with them) but really more so that I want to avoid issues further down the line, I know I have the condition due to the smell of the keytones in my urine, and the elevated phe levels of my blood, so I suppose its better to be safe than sorry. Anyway I recall questions like "don't you want to be normal?" I have never seen myself as otherwise unfortunately. But I would rather not be "normal". I would rather be different, but not because of some stupid disorder, or some feeling of entitlement, but rather because I decided I was going to do something with myself rather than live life in complete mediocrity doing what everyone else does. Being normal is obscenely mundane. I believe it was Thoreau that said "Most men live lives of quiet desparation." Which is exactly what I have observed of my family, and my neighbors in this middle, maybe upper middle class. I don't want that for myself at all, I would rather live a life that is more akin to a dramatic battle, or a romantic story... most people see this as unrealistic of course, but again these are the people living lives of quiet desperation while those self-made millionaires, or great philanthropists all tend to agree with the unrealistic side, now is this a cause of their success, or an effect of their circumstance? Keep in mind though that these individuals are self-made starting from a middle class background.

1 Review of New Blog

  1. Registered: Jun 23, 2010

    Posts: 0

    dallas, Georgia

    I know just how you feel….. when I am ready to leave a blog I will…. this is my first day on

Add Comment Register


Your email address will not be published. Required fields are marked *

Comment *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Processing your request, Please wait....


Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional