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Social life part two: friends PKU never held me back from joining new clubs, sports teams or making friends. I prefer to only disclose my PKU on a need-to-know basis. This allows others to get to know ME, NOT my disorder. Your child does not need to be a walking billboard. Don’t get me wrong, I am not ashamed of PKU but strive not to let it define me. You and your child will find ways to communicate with others when you feel ready. •
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I can understand parents’ concerns about the effect of PKU (or another metabolic disorder) on their child’s social life. At this point, it is your life. You pour an absurd amount of time and energy into planning and preparing so your child may live a healthy life. ‼️ Good news- it gets easier. As your child grows, they will develop independence. Let them order at the restaurant. If it comes out wrong, they will learn quickly how to communicate the limitations of the diet effectively. Help them prepare low pro food to bring with them to social events. Provide support but let them experience these little challenges in a safe, controlled environment. •
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I have been so blessed with a wonderful friend group through the various stages of life. These friends have been some of my biggest support systems, even to this day. Sometimes friends and family worry more about my diet than I do. They have seen my biggest challenges and been there through it all ❣️ From high school sports teams ➡️ homecoming dances ➡️ prom ➡️ college ➡️ nursing school ➡️ sorority ➡️ young, single professional ➡️ grad school ➡️ marriage ➡️ making a home, PKU has not made a difference. •
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#pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku
This amazing image is of a pharmacy stocked with low protein foods in Italy that my mom happened upon in her travels. Not only is the food readily available but is also covered by insurance in Italy. What a luxurious idea it seems for our food to be treated as what it truly is—a medical necessity. ‘Food is medicine’ has never been more applicable than for people with PKU and other allied metabolic disorders. And yet in the United States insurance does not cover it and pharmacies do not stock it. We order food from around the country and the world that costs hundreds of dollars and may take weeks to arrive. Without this food, people struggle to stay on diet or even eat enough to not be hungry all of the time. Medical foods and formulas should be universally covered. Please lend your support to the Medical Nutrition Equity Act (HR 2501) in any way you can. #pkuawarenessmonth #pkufood
Hallo guys...Yang pada bingung cari tempat oleh oleh yang unik dan lengkap langsung datang ke toko @ayahbakery_
Disini banyak bolu, bika Ambon, dan lain lain..nah yang pecinta bolu langsung mampir aja ke storenya @ayahbakery_ ya Dan @ayahbakery_ lagi ngadain GIVE AWAY nih
Untuk 5 orang Pemenang dapat 5 bolu GRATIS..
Caranya:
1.Follow instagramnya @ayahbakery_ dan like postingan diatas
2.komen dibawah “pengen makan enak” dan tag 5 teman kalian
3 untuk pemenang diumumkan hari Sabtu 2 Maret 2019
Buruan yuk... ikutan give awaynya!!! .
JL.sudarso KM.30 Pasar Minas HP: 085361865420
JL. Raya KM 6 Perawang HP:082160997205
JL. M. Yamin SH- Simpang SPBU NO.5 Bangkinang
JL.Raya KM.4,5 Perawang HP:082160997205
JL.Garuda Sakti KM.2 Pekanbaru .
JL.Raya KM. 4 Perawang
#oleholehkhasriau #oleholehriau #oleholehenak #cake #cakeriau #bolu #boluriau #mukbang #foodies #food #ayahbakery #ayahbakery_ #cakehits #pkufood #bikaambon #bronislumer #cakeriau #tokoroti
Working with elevated levels all week after a viral illness that quadrupled my levels and then delicious brussels and artichokes on Easter Sunday. By mid week all I wanted was a large, veggie loaded green salad. Fresh rolls satisfy my veggie cravings but are still super low in phe. There are 70 mg of phe for two rolls stuffed full with green leaf lettuce, cucumber slices, a scoop of low pro noodles with coconut aminos and fresh mint leaves. Add whatever veggies you want and top with sweet chili sauce for all the flavor and fresh veggie feels. •
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#pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku
Sometimes new PKU moms tell me they worry about what impact PKU will have on their child’s social life. ️♀️ Part I: dating life. As a young woman, PKU never affected my dating life. If anything it was a topic of conversation on a dull first date. My husband had no comprehension of metabolic disorders (let alone PKU) when he walked into a bar in Hanover, NH six years ago to this very day. That night he joined my trivia team named HBN for “hot blonde nurses”, subtle I know ♀️ Over the past six years, he has worked to understand PKU and has been extremely supportive. However, seeing me manage the diet so effortlessly sometimes gives him a false sense of security and he occasionally takes for granted how much work can go into it. When I need more from him, I tell him and we work to make the best plan for good health moving forward. Those around you may stumble but they will find their own special way of being supportive. With PKU, you must speak up and advocate for yourself. Never lose your voice You must share what you need from others to live a healthy lifestyle. Last weekend I came home to this delicious, low protein meal that my husband made all on his own from start ➡️ finish. I was overwhelmed with gratitude because I know how hard he tried on this single dish. He doesn’t excel at cooking or grocery shopping but he is my rock. He is there even when my levels are high and is actually unfazed by any side effects I experience. Of course, I had to take a picture of this yummy dish but there were staged photos he took on the camera already. Maybe he actually is developing a knack for this? : no insta hubby ❣️
#sayhellotomokka :There is always something new to learn and feel each Sunday!
Have a nice weekend ♥️♥️
: Marble Sugar Iced Coffee
Only IDR 25.000
Valid 'til June 30th 2019
#jktfoodies #bdgfoodies #sbyfoodies #cirebonfood #balilife #balifood #balifoodies #bekasihits #bekasifood #jktfoodbang #kulinerjkt #infokuliner #kulinersby #kulinerjakarta #kulinerbdg #kulinersurabaya #jogjafoodies #jogjabikinlaper #pkukuliner #kulinerbandung #pkufood #pkueatlovers #surabayakuliner #balikuliner #ramadhanceria #berbukadenganyangmanis
#sayhellotomokka : It's almost Iftar Time.
'Marble Sugar Iced Coffee' will be perfect for you ♥️♥️
Only IDR 25.000
Valid until 30 June 2019.
#jktfoodies #bdgfoodies #sbyfoodies #cirebonfood #balilife #balifood #balifoodies #bekasihits #bekasifood #jktfoodbang #kulinerjkt #infokuliner #kulinersby #kulinerjakarta #kulinerbdg #kulinersurabaya #jogjafoodies #jogjabikinlaper #pkukuliner #kulinerbandung #pkufood #pkueatlovers #surabayakuliner #balikuliner #ramadhanceria #berbukadenganyangmanis
Zenbu Dynamite Roll w/ Cheese
Nih aku pesan dynnamic roll yang isinya ada ebi, crab stick, unagi, kani, avocado, dll. Yang di sajikan diatas hotplate dengan cheese yang rasanya super duper gewd
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Zenburesto, Ska, Pekanbaru
❤️ 8.5/10 lebih enak Tokyo Roll yang atasnya salmon
Rp95.000,-
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#sushi #dynamiteroll #zenburesto #sushilovers #cheese #hotplate #pkulover #pkucity #pekanbarukuliner #pkufood #makananpku #pekanbarufood #avocado #ebi #salmon #avocadocoffee #avocado #ska #beatricequarters #ska #malskapekanbaru #malska
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