BC Residents and news, Events, Social Media

May is PKU Awareness month

May is PKU Awareness month. In honour of PKU awareness I am partaking in a PKU photoaday challenge and I am organizing a kamloops Walk for PKU.

The Walk will be held on May 30th at MacArthur Island Sports center, in kamloops from 1 to 4 pm. We will have refreshments and a silent auction. Donations raised will go directly to CanPKU to help fund other events, education days, seminars, advocacy and lobbying campaigns and more.

The PKU photo a day challenge is online through facebook and instagram. 2015-05-02 01.51.31

To partake upload a photo using the hashtag #PKUphotoaday . Each number corresponds to the day of the month.

How are you celebrating PKU Awareness month?

Low pro food / cooking, Managing the diet

My opinion on eating out with PKU.

A thread on one my facebook groups has created some drama and sparked my writers block.

It seems expectations of eating out with diet restrictions have drastically changed over the years.  Many question the rolls and responsibility of corporate restaurant changes when it comes to catering to the restrictions of the partons.

Where I was raised with the notion that If I could not eat off the menu, or could not be accommodated then we simply changed where we were going out to eat. Now a days it seems many PKU families bring their own food or ask the chef to prepare a low protein option. With so much focus on healthy eating, diet restrictions and things like gluten free options and clean eating , how much responsibility is held by the restaurant vs the people?

It seems the normal expectation in society is that it is the restaurant’s job to accommodate. I have very mixed thoughts on this and thought I would share.

These are my own opions are not a reflection on anyone else and not an attack on anyones parenting or how they rasie their PKU Children.

I was raised to believe that ordering off menu meals was rude and insulting to the chef. When you go outto eat you are choosing the place you wish to eat based on what you know about it, previous experiance or the reputation. You are going out to enjoy a meal prepared for you and for something diffrent. Usually for a special occasion too.

I was always taught that with my PKU I had to be careful of what my options where and ask the protein content if I did not know it. When I was younger we would call a head and ask if they served mashed potatoes or vegetables and what they where made with. Then we would look up the phe amounts before going. Now if you have a smart phone you can do so in real time.  When we ate out for breakfast I would be fine with either toast and jam or a side of shredded hash browns and an apple juice. This was very easy to do at places like Dennys and or white spot. Nowadays I really enjoy Coras as they have so much fresh fruit and toast. Even though toast is higher I would accomodate for it in my day .

Lunch is als pretty easy when eating out. Most fast food places, and many pubs and family spot will offer a garden salad and fries or sweet potato fries. Though I know longer eat at fast food places, I remember as a kid going to Mcdonalds and my mom would count out my fries and I was aloud 10 fries and a salad.

I have dinner down to a science. ” I will have a side of mashed potatoes, seasonal vegetables, no gravy,plate margarine is fine, and can I get that all on one plate instead of 2 side plates?”  When I count I count the potatoes a bit higher then what is listed to accommodate for any milk products.

I haven ever asked a restaurant to cook my own low protein food or brought my own food with me. To me that teaches one self to be entitled. It also brings more attention then needed. Asa  child I would have been embarrassed to cause such a fuss. It would make me feel different and shining a big spotlight on me.

I felt much more special when I could find something on the menu that I could have. It made me feel special and excited to feel some what “normal” .

Restaurants that have things I can order are my favorite places to eat and I can going to return again and again. If I cant eat their then i am simply going to go somewhere else.

When I am invited out to dinner with friends and family I call the place a head of time and ask them to see a menu . This way I am not asking the host or my friend who may not know and not inconvenience them on their birthday or special occasion.  and the majority of the time I can find something to order, If not I eat a head of time and just order a drink . Then I simply do not go back. Now my close family and friends know me well enough that they ask me first what places i can eat at at and we choose somewhere together from that list.

Eating out does not have to be such a hassle. It is a luxury for enjoyment and a choice we make. It is not a necessity. I do not expect special treatment. am i sometimes annoyed by the accommodations and options for those who chose to eat gluten free, yes. Do i wish I had more options and choices yes. But I do not let it take away from my experience and the social of eating out with friends. It does not effect my day to day life. It does not have a direct impact on my diet, my self esteem me health or my PHE levels. It is simply a social activity I enjoy from time to time and wish other could do the same.

When did we all become so entitled? In today’s society we should be more thankful for the changes and choices to restaurant eating and celebrate the small victories like being able to find something that already compliments my diet.

Again this is just my opinion. I am not a PKU parent, I am adult with PKU . I have lived this life and these experiences. This is from my point of view from what I have learned and lived over the years.

PKU has never taken away from my experiance or stopped me form enjoying a meal out. It does not have to do the same for anyone else.

Not to mention the violations and suits a restaurant could face by preparing food not from their own menu. It i snot always their choice and they must follow the law, permits, and have license to protect. There are to many variables on what could go wrong when a chef is working with unfamiliar food products. It is unfair to expect that of them. Or to put that situation on them. Please consider them and their business when making your decisions and expectations.

That's my PKU life

52 days.

I am breaking my hiatus and attempting to write again. It has been 52 days since my last a post and I have sure felt it. I have had words spiraling around mixed with my emotions and thoughts but just have been unable to put them out there.

I needed this hiatus. It has been an incredibly tough time. Though we continue to feel the pressure I see the light at the end of the tunnel.

Over the past few weeks we have been through alot. February was one of the worst months we have had and I am so glad it is over. A true test of strength . Normally in times of struggles writing helps get me through. This time I just needed to get out of my head.  To live in the moment and find myself and re connect.

Sometimes being stuck in your head can be detrimental. once stuck there its easy to stay there, the weight of everything pulls you down and your thoughts spiral and build up.

Living in the moment focusing on today brings out your strength and proves to you , you can handle anything. That you do have the skills, the ability and you do get through it. You just do it!

February was a slow month for work.  Being on call each day waiting for the phone to ring. I ended up only working 3 shifts in february.

On Valentines day Cole and I went for a drive through the grass lands for an adventure. We took Copper and my camera and just planned to enjoy the day. We have been having spring like weather for a few days at that time and the snow had mostly melted. There was still some ice and snow up in the grasslands but it was a beautiful sunny day. Lots of mud and puddles. I was shooting photos out the truck window and enjoying the breeze. We approached a large looking puddle and cole told me to roll up the window while we drove through so we didnt get wet. We went to drive through the puddle and ended up hitting a sheet of ice at such an angle that the truck right side broke and the wheels went down, there was water up to the door and we where stuck. Not going any where!! We could not get a tow truck as we where on a dirt road 20 km from the main road. Ww called a friend to pick me up and Coles brother to come asses the damage on coles truck. We had to adandon it over night as it was not driveable and we could not get it out. Coles brother chris was able to pull it out of the puddle but they where going to have to fix the truck up there.  Chris picked cole up on sunday to drive back to the grasslands and work on coles truck. They where able to pull it down the road some more close to the pavement and main road but as they where pulling it the wheel bearing broke off and so did the tires. They had to abadon in again for the night. Chris had some parts at his house so they went back to pick up the parts and on there way driving back to coles truck a drunk driver ran a stop sign and smashed into cole and chris. Chris was driving. Cole was the passenger. Chris truck was heavily damaged and written off. Cole had some soft tissue injuries and a very sore hand from bracing for the impact. Which we recently learnt is actually broken. So now Cole has his first cast and is off work for 8 to 12 weeks.

So Between us both we pretty much both have not worked much in the past few weeks. February is a very slow time of year for casual nurses. March is to apparently.

amongst the 2 car accidents, I had a devastating lost. My beloved uncle John passed away on Feb 2st after nearly a month in the hospital with an internal bleed caused by his liver cancer. He suffered so much. I was unable to go and visit him since Cole and I both had not been working. I did get to talk to him a couple times but it took alot of energy out of him. I spoke to him the morning that he passed away. I did not know it would be the last time I talked to him. I am comforted to know that when he woke up in heaven, he was finally pain free and no longer suffering.  He had such a hard life and had lived in chronic pain for so many years.  I am happy to know he is no longer suffering and he is with my beloved grandparents, his parents. But I miss him terribly. I still cannot believe he is gone. He was 63 years old. The same age my grandparents passed away from Cancer. My grandma had lung cancer that spread to her liver. My grandpa had back/ bone cancer and he passed away 3 days after his diagnosis. My uncle started with Bladder Cancer and lead to liver.

At work on the few shifts I had had , I had 2 deaths right in the same week I knew I was loosing my uncle and after. So it really brought that home. I have been a LPN now for 5 years and in my 5 years I had one of my own patients die. Now I have had 2 more with in weeks of each other.  When i lost my grandparents I was 12 and 13 years old. Now I am an adult and a nurse and my uncle is the first loved one I have lost since my childhood, my nursing skills helped me get through it and also re awoken how it is to be that family member , no matter how prepared you think you are.

With Cole and I both working very little we have been finding ways to fill our free time, and we had been having such gorgeous warm weather for weeks now, so we have been hiking and walking almost every other day.  On february 1st I shifted my focus and my goals from wanting to have a baby to wanting to focus on myself. Wanting to focus on fitness and my physical self. To finally loose the weight I have been trying unsuccessfully to loose for many years.

I started tracking my intake again but this time with my fitness pal. And unlike all my previous attempts at losing weight , this time I am focusing on calories and not my phe levels. I am still of course trying to keep them in range but I am having to cut back my low protein portions, increase fresh healthy foods. I am weighing and measuring and recording everything.  I have had to include some higher protein foods to achieve my balance with calories and weight loss so my levels have risen a bit but I am losing. I have lost 9 lbs since February 1st. My levels have been in the 11-13 range . I would like to keep them around 9 or 10 at the most so it is still a work in progress. The first day I ate like normal and recorded everything to see what my intake was like and I was shocked to see i was consuming over 2500 calories a day. I have been living my life around my low protein food. EAting whatever i wanted and as much as i want as long as it was low protein. So my levels stayed super low but my waist got bigger and bigger. Within 24 hours i cut my calories to 1740 and drastically cut my portions. It was a real eye opener how small real portions actually are. The first 2 weeks where so tough!I was so hungry and cranky and moody, and angry!!! I had stomach pains and hunger and felt like withdrawals. But i just took everything one day at a time and I am really enjoying the time out doors. I look forward to the hiking with cole and copper . I am enjoying setting and reaching goals and challenging myself. I am enjoying the way my body feels after a hike and I am noticing small changes. I am feeling proud of myself.

I am also still in Cognitive behaviour therapy group once a week. We are going into our 10th week and I am beginning one on one sessions for trauma counselling. At first I was unsure what to expect and didnt really understand what the therapy was suppose to accomplish or what I would learn from it and I had my gaurds up aganist it. Now I really am feeling like I am taking it in and learning. I do feel personal growth and new skills. IT has been good for me. I am learning more about myself and who I am . I have kept myself down and as a victim for so long that I no longer had a relationship with myself or recognized who I am. I felt undeserving of self compassion and it is something I still struggle with. I have compassion for my family, my friends , my co workers and my residents but not for myself. I feel like from what I have been through over the years that I am not good enough.

These last few weeks I am starting to reconnect and feel like these puzzle pieces are starting to come together and pieces of me i am recognizing again. I have genuinely laughed, cried, been happy, been angry and have had real emotions that i have aloud myself to feel deeply and not just surface thick.

I am re connecting with activities that make me happy. Like being out doors, hiking, being out in the sun, spending time with copper and cole ,  I have made a few new friends and have been trying new things. I am having spending lots of time in the yard getting it ready for spring. Doing yard work, pruning bushes, weeding garden beds and clearing away the debris from winter. Yesterday I even got my flower beds seeded. I have started my herb and veggie seedlings inside and am planning my garden for this season. It was plus 17 and beautiful sun yesterday so i spent all day outside. Today however it is raining so its an inside day. Hoping to do some baking!

So that has been my journey over the last 52 days, The ups and downs and highs and lows. Writing out in words does not do it justice. Fitting it all into this one blog post makes it seem so little now , but getting through each day has been a real challenge and facing each moment head on . It has taken great strength . The support from my friends and family has been so appreciated. I have enjoyed not being on line as much and taking a step back from the groups and fb and interacting but I am happy to get back to my blog. I love writting here and interacting with you all.  I hope to write again more often!  I hope you are all doing well and for those that make it through this whole post, I thank you!

All the best ,

Amanda

Low pro food / cooking

Cooking day.

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Been in the kitchen all day making what I call lunch foods. Even thought I be trying each for dinner tonight lol.

I did a lot of deep frying today. I really need a deep fryer. I am using a pasta pot filled half way with vegetable oil. Heated and then checking them temperature with a meat thermometer.

Today I made Buffalo things ( deep fried Cauiflower) The recipe comes from Cookforlove.org and I mention it in a previous post.

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you can find the recipe at the following link :

http://cookforlove.org/buffalo-things/

I also made Salad Rolls. An Original recipe by Nicole Pallone. I followed her recipe exactly . Though I attempted to deep fry them the rice paper went black , they burnt and fell apart. So then I tried broiling them in the oven. As you can see they are a bit burnt. Next time I am just going to leave them alone. I have had them before at a BC PKU event and just loved them. They are a lot quicker and easier to make then I first thought they were.

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Nicoles Recipe : 

Here is the spring roll recipe i am going to make tomorrow!

Low Protein Spring Rolls
Ingredients:
120g shredded or julienned carrots
130g chopped cabbage (I used coleslaw mix)
175g bean sprouts
100g chopped water chestnuts
16g chopped green onion (that is all I had!)
Salt & pepper to taste
2tbsp sesame oil
1pkg mung bean vermicelli noodles
1pkg rice paper wrappers (label said 0.4g of protein each)
Fresh basil – one leaf per roll
Optional – your favorite hot sauce!
Sweet Thai chilli Sauce
Directions:
Lightly sauté the first 5 ingredients in the sesame oil, literally just a few minutes to soften and combine the flavours.
Add salt & pepper as desired. Set aside.
Drop the rice noodles in boiling water per package directions until soft, then drain and rinse with cold water.
Put a plate on your kitchen scale. Set up a pan/bowl of hot water large enough to submerge each rice paper wrapper.
For each spring roll, submerge a wrapper until soft and pliable then place on the plate on the scale. Add 30 grams of the
vegetable mixture and 15 grams of cooked rice noodles. Wrap per the package instructions and voila! Serve with plum
sauce or sweet chili sauce and let the whole family enjoy.
Nutritional Information:
Each spring roll is 3.18 exchanges or 47.7mg of phe. This includes the wrapper which, at 0.4g of protein each was
counted as 1.33 exchanges (20mg of phe).

and then I made some low protein taste connections Perogi’s

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The recipe is very simple. I boiled 2 cups water, 2 tablespoons vegetable oil, and 2 cups taste connections multi purpose baking mix. I stirred all together very quickly. Then used my hands to make sure I was getting all the flour.  I let it cool and I made my filling which is country sunrise low protein mashed potatoes, green onions, garlic and a little dayia cheese shreds. I ripped off handfuls of dough and worked it till it was soft, patted down into a circle, put a teaspoon of filling on , folded it over and then deep fried it till they floated.

All in all it was a sucessful cooking day. All thought I am a bit disappointed with the appearance of my salad rolls. I am totally going to have to attempt them again soon!

Please feel free to share this post. If you try any of the recipes I would love to hear what you think!

Low pro food / cooking, Managing the diet

I’ve found a love, of CookForLove!

I tend to be a creature of habbits. Sticking to the same patterns, the same foods, the same way of cooking. I am reluctant to try new things. I always have been. With having to spend my whole life up untill last year paying for my own low protein foods , it was not worth the risk. I am a picky eater and If I dont like something I will not eat it. It is such a shame to waste food, specially my low protein foods.

That being said, you will see i have been long over do for jumping on the cook for love fan wagon. Now that I have , I can rant and rave about how awesome it is with everyone else!

I have always been a supporter , due to the reputation in the community, how well everyone loves it, what it has done for the community and expanding  variety in diets. I am always quick to point others to their site along with the cambrooke foods recipe section.

When it came to my own culinary needs, I found the recipes to be long and intimidating and did not think I had the time to try them out. With a lot more free time on my hands now that I am working casually and trying to focus on more healthy foods, not just low protein products, I have dived right in.

I can see what all the fuss is about!!

My first experiment was the cook for love buffalo wings. I had them at a BC PKU day event and fell in love but felt I would never be able to pull them off!!

WELL! I sure did. Not only that but I took the whole batch to work and shared them with all my co workers. They all left with the cook for love link and the recipe.

While at work the other day  I heard staff members not even in my department talking about them! They have made the rounds! One care aid told another, soon the kitchen staff and the housing  departments where talking about them!

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next up I want to try the other “wings” the bread, scones, english muffins and cinnamon buns! oh heck! i want to try it all!!

If you would like the recipe or to see what all the fuss is about check it out!!

http://www.cookforlove.org

Low pro food / cooking

How do I make my Eggz?

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I get asked so often how I mix my Cambrooke eggz, I do not follow the recipe on the bag.  So I am finally writing it down!  I make it my own way and what I do is:
mix 1/2 Cup Cambrooke Eggz
with 10 tablespoons coconut milk,
wisk with fork
pour into heated non stick skillet, ( i usually go between 4 and 5)
cook till peels away from skillet without sticking or crumbling
Add Daiya Cheese shreds  and vegetables of your choice,
fold over half and then flip. cook each side till light golden or to desired texture.
Makes a fabulous omelet.
Add thai sweet chili sauce or fresh maple syrup ,
salt and butter to taste!
BC Residents and news, Low pro food / cooking, Managing the diet

Wish list

I get asked alot about what products I like and am currently filling out the survey for BC residents on what items we would like to see with our subsidy and I thought I would share my ” wish list” with you. I have tried all these products before. They make my diet way easier and give me more variety and easy options for work and school. You will notice there are no pre made breads or pastas on my list. Aproten is my most favorite pasta and I have that already. With breads, I have better success making my own then any pre made. I find them tough and don’t always come in good condition. I consider them a waste of money. I prefer to make my own with wheatstarch, or the cook for love recipes, and of course the taste connections. SO instead my wish list is items I cannot make myself.

Here is my wish list , if I could choose what foods I would like to see included that are currently not included under our subsidy.

These do not include the products I love and have access to already. Special products now referred to as the BC Medical food nutrition program, does a fabulous job and has a lot of selection already!

Taste Connections :

Low protein bread mix,

multi baking mix,

versa mix,

wheatstarch ,

sugar cookie mix,

cake mixes ( strawberry and lemon)

I have been asked why I prefer taste connections of cambrooke, its not that they are better, I love cambrooke am a proud supporter . They also have great customer service too. However Taste Connections products as I have said before are made with more whole nutrition, no chemicals or GMOs and are made by Malany. They also imate “regular” food textures so closely anyone can eat them and you cant tell the difference. They don’t taste like medical or imitation and the mixes are so easy to work with. If you have never had “regular ” breads or bakery products you would not know the difference and thats fine. however I use to cheat a lot and miss those textures, and the taste. Taste connections is the closet I have ever found!

Cambrooke Foods:

GO pockets ,

Bigger bagels,

ravioli,

mini pizza pockets,

pita pockets,

tweez ,

cozy morning cereal.

Cambrooke foods is my go to store for those pre made foods I cannot make myself, or do not have the time to make. They are so convenient its like going to a grocery store. They are supper easy to take to work or school and traveling. with way less time and energy! These are my go to products that I miss from them.

PKU perspectives:

La Tiara Taco Shells,

Country Sunrise BACON MIX 

Country Sunrise SAUSAGE Mix 

Wai Lana Chips

What I love the most about PKU Perspectives is their country sunrise products and the “meat alternatives” that have given me the opportunity to try new things , things I would never have dreamed I could have before with a normal looking meal when I sit down. Like camping making low protein smokies or burgers. I am not a big fan of the cambrooke pre made meat alternatives but love the textures of the pku perspectives ones and the ease of making them on my own!

Toronto Specialty food shop:

Frostline Non-Dairy Ice Cream Mix – Vanilla

I have actually never had this, and usually opt for a lower in protein ice cream option, or i splurge and have regular ice cream as i have never found a suitable replacement to the texture and taste, so wouldn’t it be nice if this was my answer for those summer time ice cream cones!!

So there it is, my wish list of products I would like to see covered in BC along with our products already covered. Do you agree disagree? what are your go to foods? Would you like to share a review or experience on a food I have listed on my wish list? Would love to hear feed back on how you like an item and maybe see your review on my blog? email me with your submission.

Please also dont forget to fill out the survey for the BCMNP through CanPKU. The link is in my previous blog post and on fb! It is 2 questions and very quick and easy. You input is very valuable and needed! Nicole Pallone is meeting with the team on thursday so the sooner the better!!