Ups and Downs...

Ups and Downs…

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Ups and Downs…


August 19, 2010 in Uncategorized

Well, today I blew past my protein goal... I underestimated the protein content of an item. I am not that bummed, because I know that there will be times that I do not live up to my goals- especially in the beginning when I am adjusting to a new diet. My diet is not as restricted as it probably will be once I begin the Kuvan trial (or, more likely, after it has been determined whether I respond to Kuvan or not). Anyone on a new diet? If anyone else is beginning a new diet, please comment here... Let's share our stories- successes and failures. Successes are great, and failures only remain failures if we do not learn from them. Otherwise, if we learn from them, failures become lessons. Today, for me, was a lesson. For those on a diet- KEEP IT UP! Hang in there... It is worth it. It is very hard to get back on the diet. I wish I never went off the diet.

5 Reviews of Ups and Downs…

  1. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    It is hard, and I don’t think any of us will ever be perfect at it :-). I’m 31, and I have had major ups and downs over my lifetime. I went back on diet (cut out all the regular breads, pastas, and vegan dishes I had let myself get used to) and started monitoring my phe intake last October. I still slip up, but I feel a lot better, and a few days of moodiness/lack of energy when I’m relaxed with my eating is all it takes for me to get back on track now. It can be done, and it does get easier! Keep working at it!

  2. Registered: May 27, 2009

    Posts: 0

    , Florida

    Since I was on the diet as a kid it’s not that intimidating now… Ibam understanding PKU much better now- I guess everyone is. Thank you Sarahl, please keep in touch!

  3. Registered: Jul 1, 2009

    Posts: 0


    I just thank God I never went off diet! I’m finding it difficult enough to do the preconception diet. If I had ever gone off diet completely, that difficulty would be compounded. I really feel for all you people out there who were taken off the diet at a young age. It must be extremely difficult!

  4. Registered: Jul 18, 2010

    Posts: 0

    Ripley, Tennessee

    I was on diet from birth to 8 and then they said I could stop. They were wrong. I have attempted to go back on diet a few times but it has been more than 10 years since the last time, now I made the decision to get serious. I am waiting on my formula to get in and I can’t go on diet completely but I have not eaten any meat or eggs since August 5. I am very proud of myself. I know that I will feel much better eventually. I am 48 years young and if I can do this any one can, hang in there.

  5. Registered: May 27, 2009

    Posts: 0

    , Florida

    Thank you for sharing that. I have been off diet since I was about 11 or 12, though I took the drink for a few years longer. I tried to go back on in 2000 and again (very briefly) in 2005, but I am now ready. I understand it better and has been a source of insight and support. I have a great rep from BioMarin who kept calling me until I scheduled an appointment with my dietician and specialist. She was extremely helpful. Some, the more cynical among us, might say she had a vested interest in selling me on Kuvan, but I believe she truly wanted to see me get back into treatment. She knows Kuvan may not work for me. PUBLIC THANKS TO LANA URBAN!!!

    Anyway, stay in touch, I think the support- knowing that we are not alone in this- is important to succeeding!

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