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August 30, 2010 in Uncategorized

I've been wondering how to find a behavior therapist for a few years. I went off diet as a kid and am significantly opposed to the idea of resuming diet for a few reasons: i cant find a supplement that duznt make me very sick. i cant commit to a lifestyle change b/c i prefer one that changes often & without having to attach to medications. im afraid of all the things that i will miss and hate the idea of a lifestyle of denial b/c i think it will erase all attempts at normalcy in my life. but if i could find a behavior therapist who understands PKU, then i could hope for some types of adjustments and get on diet again already. but i have these psychological/mental blocks that make it hard for me even to decide a relationship b/c of the repercussions of my current problems and my fear of *** bc im terrified of getting pregnant. am i alone with all these worries? and should i just kiss my life goodbye b/c i cant get past this on my own?

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  1. Registered: Aug 27, 2010

    Posts: 0

    Plainfield, Illinois

    One of the hardest aspects about having PKU isn’t the dietary ones; they are the psychological ones. I used to ask “why me?” The question still remains the same today; but the years have changed the inflexion and the intonation, thus it has changed the very question itself. I used to think that having PKU was the worst thing in the world that could ever happen to anyone.

    There has been a lot of research and development of new formulas so there may be a more palatable formula out there for you. Also, research GMP products, as they have no medicinal taste, and are very good. I believe Cambrooke foods sells a GMP formula.

    If you are afraid of a pregnancy, you could see a doctor about a form of birth control. Your best bet may be to speak to a clinic or a doctor that deals specifically with PKU and explain your thoughts and concerns to them. They may have some solutions that you have not thought about, or be able to direct you to proper counseling.

  2. Registered: Aug 25, 2010

    Posts: 0

    Indian Harbour Beach, Florida

    Im always worried I might get pregnant, even though i know nothing happened. Its always an anxiety of mine. Im single again, cause I let them know Im prone to mood swings, and weird hormone imbalances due to sometimes going off diet with my pku, but it seems no one really takes it that seriously. What supplements make you sick? 3 yrs ago i was given a new supplement to try, was on it for 2 weeks before i started seizureing, pulling my hair out, and had other horrible psychological issues because when i called my pku doctor about it, they said, O yeah thats because we gave you a high phe supplement by mistake. They knew about it for a week and didnt tell me, so now 3 yrs later, i still am always vomiting, blacking out, fainting, chronic migranes, and severe stomach pain and cardio vascular problems. They had me on another one also that made me vomit and get diareah all the time. As far as taste, well i liked the Loflex because you only have to mix it with 2oz water so its like a shot and you dont have to drink it all day. Im now on phenyl ade chocolate flavor and orange cream. I had to go back on a high cal supplement because with my nausea and stomach pain, i wouldnt eat for 2 months. I dont know about a therapist, im looking for one myself, but as i search, i will let you know!

  3. Registered: May 19, 2010

    Posts: 0

    Southampton, Pennsylvania

    well – ive tried everything available and truly believe that it is the lifestyle imposition that I hate the most -i dont focus on food. asa matter of fact, whenever im busy, food is the first thing off my list. if i hafta watch for regular doses of anything including all that counting of grams and amts and how much i ate and if i had enuf formula in a day -it’s mentally oppressive to me. i focus on my rest to remain stress-free and my mood swings are occasional and infrequent. im on kuvan and that is simple since it only means that i have applesauce every morning -THAT is the least imposition on my lifestyle and my health. i WANT to be on diet, but i think i need real help to make it work for me. im sure i could manage it WHEN my level is down to 2, but until it is my focus and memory is just NOT sufficient to get me there. NOW HOW did the doctors and nutritionists overlook that reality when prescribing all these wonderful ideas? perhaps their success is only focused on parents who control their child’s PKU and by the time they are adults -its 2nd nature. no need to help the hopeless cases who now suffer the effects of all ignorance b/c we were told to go off diet when we were 5.

    Yes -i looked into birth control. im not afraid of getting pregnant in general. im afraid of the whole possibility of the accident when i take birth control & wind up being the 1% that duznt work. its my reality since i am PKU -small percentage of population as well. i feel guilty about falling in love & am afraid to destroy my child’s life by trying to hava child at all b/c I CANNOT control my level and seem to have no possible solutions to open that door again. It’s an entire life’s stress factor and doctors think we’re unreasonable BECAUSE we understand. Its a whole complicated mess. And -i lost a fiance from all this as well. NO help -very pathetic

  4. Registered: Aug 27, 2010

    Posts: 0

    Plainfield, Illinois

    Joy, certainly dealing with the mental aspects of PKU can be exhausting. I like you, have tried every formula that has ever been produced, and the GMP products were by far the best in my opinion. I also hate the tediousness of having to measure all of the foods I eat. Your first step to getting back on track, is to form a support group. The support group will be there to help you and keep you motivated. They will also help you know that you are not alone in the struggle, and you can share your frustrations with them. Consider this website as a part of your support.

    Perhaps because your focus is not what you want it to be, you should consider working slowly towards your goal of being on diet. It is too difficult to go from one extreme to the other, meaning totally off diet to a strict regimented PKU diet. Start small, eliminate one bad food per week or per month whatever will get you back into the PKU lifestyle. For example, start by saying “I’m not going to eat chicken” and every week or month add a new food that you will eliminate from your diet. On the flipside, as you remove a bad food or practice, add a PKU positive one. For instance, if you stop eating chicken, try to start eating a low-protein food. Don’t worry about quantity of food at this point, just focus on first eating the right things and eliminating the bad things. Over time, you will gain better focus and mental memory, and as you gradually begin to lead a more PKU like lifestyle you can continue to improve your control.

    Going back to the PKU lifestyle takes time, and should not be an overnight thing. It is a long battle that you have to want to win, and you have to be willing to take the steps to achieve that goal. By starting small and gradually working your way back into things, you will have a much better chance for success.

    Always know, that you have an online support group here at this site. You can do it, it will just take some hard work.

  5. Registered: May 19, 2010

    Posts: 0

    Southampton, Pennsylvania

    yeah -not sure i want it that badly. it is AWFUL hard work and I prefer to keep my life UNcomplicated. This just makes normal things like breakfast impossibly difficult. It’s such a bother b/c there is no PKU food that tastes like anything normal and I already feel deprived enuf of a relationship and all normalcy. Ive given up on connecting with others “normally” -so, I suppose Ill never be married. Ive never wanted children b/c of the PKU curse as well. I just cant seem to feel like PKU-diet offers much of anything. I cant even lose weight like a normal person. Im trying to be healthy as tho I’m NOT PKU. I know it duznt work that well. But -for now, my plan is to educate a personal fitness trainer on my PKU dietary rules/management and she will help me construct an assimilated diet plan so I can be as healthy as possible without it costing me thousands of dollars eating sandy food. PKU is horrible, has screwed up my life, and I hate it. -thats my vent. I also hava brother with PKU(he prefers denial).

  6. Registered: Aug 27, 2010

    Posts: 0

    Plainfield, Illinois

    Well I think you are probably doing the best possible thing you can do for yourself. You are educating yourself and not ignoring the fact that you have PKU. You may return to the diet in the future because you want to do something positive for yourself or for your future children; you will return to the diet only when you’re ready and not before then.

    Like you, I used to be very angry about having PKU. I felt that nobody else could fully understand what my life was like having to manage my diet so strictly, and that nobody wanted to help or that they would make fun of me because my foods were different than “normal” food. I gradually went off my diet because of it. As I grew older, I realized that I underestimated many people for a long time. I realized that I had friends and family that were supportive and were willing to help me manage my PKU. It took a long time, but I finally realized the only person I was hurting by not being on the diet was myself. When I was younger, the way I used to think that I could get back at my parents when I was mad at them was by eating something that I shouldn’t. I stopped that way of thinking a long time ago, but it took even longer for me to realize that the person I was really hurting was myself.

    Living with PKU can be a challenge, but there are worse things that you could have to deal with. If the cost of food and formula is a challenge, you may want to contact the companies that make the products and see if they could contact your insurance and negotiate some coverage arrangement. There are several states that require insurance coverage for medical foods, and even some states that provide it for free.

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