I have a feeling this blog post may push a few buttons but I need to get something off my chest!

Not everything is because of PKU!!

I know right? To think! What could I possibly mean? well let me elaborate. I am so tired of reading about how everything is because you have PKU.  When you go to a new doctor, or go to the clinic even for a cold or some sort of pain, god for bid you get admitted to the ER and everyone panics because you have PKU. Then they spend hours wasting time making sure its not related to your PKU, when they could have just asked you.  Honestly, I know more about my PKU then most doctors around here. But a doctor will never admit that. They have to know everything, they cant ask a patient for help, even when I have lived with it all my life, and they have never heard  of it.

That is just one example from my own life, but the cause behind this post today is from my annoyance with the adults who blame everything in their life because they have PKU.  Failed marriages, loss of a job, headaches, unemployment, to many bills, bad relationships, arguments, and their attitude are all because they have PKU. They blame everyone else , from there parents, to how they are raised, their families, Their employers an even their doctors and PKU clinic staff.  I understand the bitterness and hard feelings. It has not always been as it is now , and many people feel like they had to pay that price.  But we cannot just sit around and point fingers. We have to be the change we want to see.  If we want something to change then we need to stand up and make it happen and just not sit around and point fingers.

I know its hard when you are effected by high levels, and you cannot always see things they way other people can.  I get so frustrated though when I am told I don’t understand or I don’t get it. That I have it easier and the kids today have it easier.  I am 27 years old now, and I have had my struggles. I have been knocked down to the point of crying on the floor of my apartment while cole holds me and rocks me in his arms, with high levels and side effects.  I have not let it get the best of me and I do not blame it on being born with PKU. I may have resented my PKU as a teenager, but why? its apart of me.  It helps make me who I am and I consider myself lucky, It could always be worse. I am blessed to have not been born with something worse. Id rather have PKU than have something like CF where the expected outcome is grim.  Id rather have PKU and control my diet and my PHE than have something fatal like CF or cancer. At least with PKU I can still live  a fairly normal life, I am not mentally retarded and I have a good quality of life.

I recognize its not with out the struggles and the ups and downs, it could be better but it could be worse. I choose to strive to do my best to make it better.

Dont get me wrong, every day is different just like everyone’s perspective. But I do not see the point on letting it hold me back. I am not with out my “I hate PKU ” moments.

I know its really hard for those adults who where taken off diet when they where young. Its not because they where “guinea pigs” it was not because there doctors wanted to make them suffer, thats the way it was. They thought they knew best, that was the treatment of the time.  Its sad and I am grateful for those Pioneer PKU adults who paved they way for research and  new treatments.  Everyone did what they thought was best, its in the past and its time to move forward.  We are so lucky to have the treatments and the research we have now.  Instead of being bitter and resentful, indulge in treatments today, try new foods and formula. BE thankful we have come as far as we have and enjoy the standards we are lucky to have now.  Even with all our new products , new formula, new treatments like KUVAN and Peg pal , there are a lot of places and people dont have the same aces. So let us celebrate and be grateful and recognize how blessed we are. Lets all help each other and continue to push PKU forward so we all can have the same acess and benifits.

That however is my 2 cents. My rant for today is over.

Thanks for listening.