I have been waiting MONTHS to blog about my recent experiences. What was a waiting for? Well, I was waiting to know the results of my months of medical trials. The bad news, I still have no clue what is going on with my body (and neither does my doctor). The good news, I'm going to blog anyway.
First things first, you have to know something about me if you don't already. I have something called PKU. Google it if you have no clue. For those of you that have a clue, the following online broadcast about the effects of PKU explains me so well. It's long...but the first 20 minutes or so will help you understand me more. If you don't know me, you probably won't care. But for those that know me well, I highly recommend it.
My entire life I have been following special diets with little hope of change. The past year, their was at last hope. A medical company developed a drug that works in some people that could make life "normal".
My disease is rare, so little had been done before...mostly because of supply and demand. The science and technology are there, but the demand is low. With the new drug came something odd...marketing. The drug company needs demand...they need everyone from our small PKU population to try their "product". And that means marketing. Suddenly for the first time in my life I am able to find useful tools. There are special journals, a social website, free conferences, and online radio talk shows. I received more info from one of the broadcasts then from other sources most my life.
Also for the first time in my life, I have been able to eat "normal". I have tried pepperoni pizza, cheese quesadillas, fettuccine Alfredo, grilled cheese, ham, mozzarella sticks, etc. It's not really "normal". I have no idea how to eat "normal". My protein levels have been all over the board (translation: doctors have NO idea how much protein I am supposed to eat these days). Although eating "normal" is fun and easier socially, most the time I just crave french fries :)
Most my life, I have been eating about 15g-20g of protein a day. Right now I am supposed to eat 40g a day. My test results are "confusing" (Those were my doctor's words). I am finding it not really worth the problems - I feel a bit slow. My new found love for cheese would easily be traded for some french fries.
Does my future hold cheese or french fries? I have no idea. I'll write more as I find out. But it is indeed an interesting adventure, hopefully one without lasting brain damage :)
1 comment:
Hey Erin, I'm curious if you are talking about Kuvan and if you have since gone off of it? I was on Kuvan for about 3 years and just this summer went off of it after having increasing health issues. It was nice and so convient to be able to eat cheese, pasta, bread and such... but I'm finding going back to the diet only makes me feel more level, controlled and better overall. Would be interested to hear more of your experience.
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