Avatar of Mary



July 23, 2009 in Uncategorized

I feel so defeated...I read so many stories of people who just do and just are the diet. I just do not understand why I do not have that bug or itch... you know the bug or itch that tells you that you need to follow the diet or take of formula. I am trying to take it one step at a time, become regular with my formula and then work on counting the equivalents. I feel so alone and out of it... at times. I go back to when I grew up a lot because it is funny how you remember things as an adult. I realized how uninvolved I was in my diet when I was a kid; besides the cooking I was not part of the structuring or counting of my diet so as an adult I am at a loss. The transition to it to my responsibility was not smooth I was a teenager and in my own words a tirant!!!! I did not want to understand the importance of the diet and my mom wanted me to take control of the diet. So it was my choice... at age 13, no diet, that was my choice. I did not want to be special I wanted to be like all the kids at my school eating pizza, bugers etc. I decided to boycott this major part of my life. Denying that this diet was any part of me. Sometimes it helps to talk about it. Am I alone or has anybody else felt like this or had an experience like this? Everytime I try to move forward with the diet I mess it up by forgetting to bring my formula to work or to take it. I guess it just brings up all the feelings from the past. Leaving me feel so defeated.alt

4 Reviews of Defeated

  1. Registered: Apr 12, 2008

    Posts: 0

    Redding, California

    My son takes his formula twice a day. Once in the morning before leaving for school, and once around dinner time. We use to spread it out when he was younger, but this system just works better for him and his lifestyle at this time. He doesn’t forget to take it this way, and he doesn’t have to drink it in front of a bunch of people who don’t understand.
    Don’t be so hard on yourself! One day at a time, one success at a time. Failures are only stepping stones to success! There are many people out there who feel the way you do. You are not alone!

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    This makes me so sad to hear you say this! Although I am having success with my diet right now, it truely was not successful until only a year ago… Yes, I did follow my low-protein diet, however I never took my formula. It has always been a HUGE battle for me… to the point that my body was so protein-deficient… Always, I thought I was doing the right thing – not eating protein.. However, I did not get the proper amount of protein the body needs which comes through formula.. I used to cry every time I had to go to my clinician and face the fact that I needed to follow a special diet and do all of these things none of my friends had to do… Then, I finally dealt with the fact I had it, but still could not do the formula component. I have tried everything from Phenyl-free formula, flavored formulas, phlexy-10 bars, phlexy-10 pills (120 a day), to Camino Pro Drinks… I did the 120 pills for awhile and felt a difference, however I eventually stopped.. at one point all I did was take pills and drink water… So I finally found Camino Pro drinks which at first did not work… I usually cannot hold any of it down… Eventually, my body became used to the Camino drinks and I was able to include this into my diet… as you see, there is really no easy answer for this diet! It is all about experimenting and figuring out what your body can handle… please do not feel like you have given up! There are plenty of times I have felt the way you do now! Do you go to a clinic? Are you aware of Kuvan? There is help out there for you… if you need any advice, please ask me! I was once in your shoes, and I know how hard it is! Keep your head up :)

  3. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    Please don’t feel alone. We are ALL here for you. I think your plan of starting with the formula is the best one. There are so many formulas out there (I think 70 or 80 according to our nutritionist) that you can find one that works for you. It is hard to go back in the past and judge past decisions. You are where you are. Day by day, every little thing you do for your diet on a daily basis pays off. Don’t worry on being perfect, just work with what you can. My son, 15, talks about not wanting to be different in school too. He is eating the high pro stuff at school for that reason. We are trying to help him with his choices, but they are his choices to make. My son also does his formula in the morning and at night. That helped him with school. Keep it up!

  4. Registered: Aug 7, 2009

    Posts: 0

    , California

    I completely understand. However, I’ve been in charge of my diet since I was about 12. I stopped because I was just tired of being different. Everyone tries to say, “Oh it’s no big deal. You’re no different than anyone else.” Well guess what. They should walk in our shoes when we’re sitting at one our friends birthday pizza party eating PKU pizza that you can’t even bite through while watching all of your friends enjoy that regular pizza with the cheese that doesn’t turn brown when you cook it, and the crust that’s soft and fluffy.

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