Living with PKU has not always been easy. In fact I would not call it easy ever. Every day you have to think ahead, plan a head, measure, weigh, cook or bake and its a constant and ongoing as breathing. Eventually it does become second nature I would say. Really having PKU is a lifestyle . I am always watching what I eat , making decisions based on meals, time of day, what I have available and how I feel. I dont ever just eat with out thinking. Everytime I pick up some food there is information running through my brain. What size is this, what is the portion in measuring cups , how hungry am I , is this my best choice? what do i feel like that I can have. What have I already eaten today? Did I have my formula? Do I want it before or after I eat? Did I take my pills? What does the nutritional information say? how many grams of protein? how does that convert to phe? ( where is my food list book????) how many calories? What is the level of nutrition is this a healthy option? Then I have to remeber to right it down and calculate at the end of the day.  These are the things in the back of my mind that become so second nature I dont really notice or think about the process.  I have a system down pretty good. I wake up ,I grab my sports bottle and a straw. I take out my pills and I mix  I my formula, 1 package of MTE and 1 scoop of orange cream essentials in 4 oz of water in my sports bottle. I add 1 or 2 tsp of benefiber an I take my pills. I make my breakfast and pour a glass of water to drink while I eat. I sit down and turn on the news.  If I am working I prepare my meal to take , If I am off I go to the gym or the pool then come home and have lunch.  sometimes its as simple as grabbing something low protein from the freezer or I have to think and plan and see what I can have and what I feel like. am I cold? can I have something hot?  Do I want something light like a salad and a smoothie or do I want something more filling like a pasta salad? Is it wednesday is it my sushi date with the girls? IF im having sushi that means low protein for dinner. Now that Iam trying to be more strict and on track better I am paying more attention to nutrtion and healhy choices, but also to making sure I get a variety of the diffrent meal groups. I do not eat enough fruit and vegtables.  I am actually quit a picky eater. Nor do I drink enough water. So I am constantly trying to remind myself to be more open to foods and to having even just alittle bit is better than none.   I dont normally snack inbetween meals so After lunch I am able to relax alittle bit untill I have to start planning dinner. Dinner is a bit more complex as I have to cook for cole to. I think about if I am making 2 seperate meals? or what I can make that he can also eat? what he would feel like? what I have avalbile and what I ate that day. If I am making potatoes or rice and what vegtables to have with it? what meat to cook cole?  How big of a salad to make? if its only for cole or If I feel like some to, or if we are having company.  i eye ball most of my foods at this point in my life but If I am unsure I measure after I cook or bake and measure just what I am taking. 

All of this over the years has just become a part of life.  It has helped me to develop skills in diligence  organization, planning, time managment, and of course cooking and baking. 

Many people do not realize these thoughts of someone with PKU. As a child my mother did all of this for me. She measured and weighed my food. She decided what I was to eat , she planned my meals out on the fridge. She made my formula, and she did all my calculations . All I had to do is get up and look on the fridge to see what I was eating that day. As I grew up , I began to rebel. I never really thought about the reasons why. I think back now and I just got sick of the no control. I got sick of having it all planned for me and not liking the foods. I hated most the foods that where chosen for me, So I cheated. I would not eat what was on the menu and lied about what I was eating even when my levels where coming back high. I still would not admit it even when I ended up in the hospital admitted from side effects of the high levels. I would not admit to myself or anyone the damage that I was doing to my body. I also did not understand. It was not that I was not educated. I had it drilled in my brain from the time I could talk. I just tuned it out. Was sick of hearing it. I made myself so sick. In the long run no one suffered but me. I will never let that happen ever again.  I have my ups and my downs and its not always easy and I am not pefect. I try to get back on track when I fail and I start again, My motto has become ,” each day is a new day and a fresh start. What you did yesterday does not matter now, Today is a chance to do it over or do it better. ”  I do the best I can and that is all I expect.  I still struggle specially with keeping low protein in my diet. I get tired and I get frustrated with having to bake and cook all the time and sometimes I feel to lazy to do so, but than when I am hungry and looking for something quick and easy I have myself to blame for not baking a head of time. even still as an adult PKU is a learning process. I still have alot to learn! But my PKU is a part of me. It has made me who I am today and is my way of life. It does not control me. I control it!!! 

Well its been a few days since my last post, My days are all mixes up since working so many night shifts. I am starting to get a over night shift pattern developed.  I have been taking canned peaches and applesauce for a snack at 1 am and then I try so hard not to eat again till breakfast at 5 am. Where i have been having either a bananna or applesauce and one rice cake with 2 scoops of my phenly ade.  I am suppose to be lowering my scoops of phenyl ade and mixing it with mte but i am to hungry if i do that so when i am working over night i have the 2 scoops. When I get home from work I dont eat anything else and I go to bed . I sleep till 12 or 1 and then I wake up and have lunch  and dinner at regular time. I have a bigger dinner , usually something thicker like potatoes or pasta salad with 2 scoops phenylade.  Where as lunch I have the one and one with the mte. On my days off like tomorrow I will just have the one and one mixture. 

I have been really focusing on increasing my water in take the past few days. I feel I have been doing well except for today. Has anyone ever noticed the more water the drink the more you crave it? I have finally been getting in the recommended amount. I think i finally understand why people say when you are hungry you may actually be dehydrated, because my hunger is much more manageable since I am drinking more water. I also have lost one pound. I think its from the water. I dont feel as bloated and my pants fit better. 

I did another blood test on the weekend and will mail it tomorrow.  so they will have 3 im waiting for results to get back on . I am hoping this one is lower. I have been eating less and my intake has been under 300 for all 3 days prior to the blood work.  My calories where a bit high thought But I am happy I can do my own records again and that I got the new version of the food list. I know that when I get the blood level back i can go back in my note book and look at those days and see what I did and what changes I need to make. 

I bought a 3 subject notebook that fits in my purse. I take it every where with me and write down everything but i dont always calculate it every day, sometimes i go back and do  them all at the end of the week . each subject tab is a month. The first few pages are a list of my weekly weights, monthly measurements and a list of physical activity and what dates I went to the gym and what I did. It helps keep me organized and visualize my progress.  

Just going over my weekly plan for this week. I am starting yoga this week with a friend. and hoping to get back into the gym and pool this week. went for a lovely hike this weekend to and got some great photos so i am hoping to get out with my camera. 

Well thats all for tonight, 

best wishes! 

xoxo Amanda