facebook, News, Social Media, That's my PKU life

3 years today.

On this date 3 years ago tonight I was working  a night shift at my old job and decided to start this very blog. I never knew that it would do as well as it has done. I am so grateful and appreciative of it.

In honour of 3 years blogging about my life with PKU it is my hope to share my older posts on my fb fan page, to reintroduce them to all new members and to refresh for regulars.

Each day I will do my best to start from the beginning and share each post over again in order.  Please patient with me when I miss a day here and there.  Life is about to get busy for us!

I hope you will enjoy the look back and share any posts that you deem share worthy with others.

My blog goal in 2016 is to write more and to reach more people.

Help me reach this goal by continuing to read, comment , give feedback , ask questions and share!

 

 

BC Residents and news, News, Social Media

PKU and Poltics.

 

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With the coming Canadian election approaching us on October 16th 2015 I wanted to take a moment to talk about voting and politics.

As a young adult I never had any interest in politics. I just didn’t understand  , never did the research of get involved.  I had no interest and found it all confusing and daunting.

As I grew older and got more involved in the PKU community I began to see things differently. The more I got involved and the more I heard the voices of others around me, I learnt the importance my voice could carry if used right. My experiences in public speaking, awarness and advocacy efforts with CanPKU taught me a lot about politics and how to work towards change. I’ve attended parliament with CanPKU and spoke at the legislator to politicians, I have written campaign letters and done petitions and I have done my research into each party and what their platforms are.

It was not until the last provincial election that I really got involved. After years of watching and listening and researching and learning how to talk to politicians how to ask and how to deal with them I reached out to our MLA candidates about why I should vote for them in the provincial election? Just how would they help someone like me?  Most of my letters and emails went unanswered or dismissed.  I requested meetings with each member. One MLA called me and we talked on the phone. However one MLA did answer my request. Our now BC Health Minister Terry Lake met with me for 2 hours! It was such a positive experience and meeting that The honourable Terry Lake earned my respect and my vote. After the election he was named the health minister and shortly after we received low protein food subsidy for all PKU patients in BC.

Since my experience with Terry, I have followed his career as health minister not only for PKU but because I am a nurse. I work as an part time Licensed practical nurse in an extended care hospital for the elderly. I follow the issues in health care and the politicians promises and platforms on how they will or how they plan to make a difference.

I follow other social issues now, things that effect myself, my PKU community, my health care community, my fellow nurses, my family, and what effects cole and I personally. I have taken time to understand my beliefs and views . I know what issues I think need to be changed. We watch the news and watch the debates when we can.

I really believe the more voices that join together and tell our government what we want the more change we can make in our beautiful nation. I find it irritating and frustrating that so many people choose not to vote. I am writing this post today to encourage everyone to get involved. to take the time, be interested, do the research the parties , the leaders and the platforms. Find where you stand and who you side with. Look at the issues that effect you , or that you are about. What drives your passion, and understand the way voting and government works.

All to often I hear people say they won’t vote because they don’t like the options, that it comes down to the lesser of the evils, or that there voice won’t matter. All voices matter. The more of you that vote depending on what party you choose, the better the chances of that party getting into power there is.

There are some great links online to help you understand.

Here are 2 of my favorites.

Strategic Voting 2015 Canadian Federal Election

http://www.strategicvoting.ca/

 

and :

Canadian Election Quiz, I side with.com

https://canada.isidewith.com/political-quiz

i found the second link to be extremely helpful as it showed me what issues where the most important to me and how much I agreed with each party in percentages.

Dont get me wrong, there are pros and cons to each party. There are things I like about each and things I hate about each. I am currently torn between 2 parties but am leading more closely to another.

When making my decision I also look at the party leaders. Who I feel would make a better leader. I also look at the past track records, and development of past issues and how they where changes or not changed. I also look to the future as some things we face today we have never faced before. I look at the promises and the facts. I also look critically at the adds, specially the attack ads.  I have no respect for the attack adds. It seems to me only one party is truly advertising and has not openly attacked another party in an add. I look at facts, science, and my community. I look at what affects me at work, at home, and in my province.

Voting is  a right, a responsibility and an honour years ago women did not have. So please take the time to research and exercise your vote. its simple and has more impact than you can know right now!

It is time for Change in Canada and I am calling on all of you to get out in vote!

 

 

 

 

Social Media

May 31st / Day 31

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‪#‎pkuphotoaday‬ ‪#‎pku‬ ‪#‎phenylketonuria‬ ‪#‎pkuawarenessmonth‬

May 31st day 31
Pku formula selfie part 2

Thank you everyone for following along on my pku photo a day challenge for awareness month.

My goal with this challenge was to educate more then my pku community and to teach people who knew nothing about pku . If anyone has learnt anything from my photos then my goal is completed .

I ask you now to help me spread the word . For everyone who has learnt anything please share what you learnt with others .

Word of mouth is key. Alone we are rare together we are strong !!!

Social Media

May 29th / Day 29

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‪#‎pkuphotoaday‬ ‪#‎pku‬ ‪#‎phenylketonuria‬ ‪#‎pkuawarenessmonth‬

May 29th day 29
Pku fact sheet /graphic

This is a screen shot of the maternal pku section of www.npkua.org

Women with pku who wish to have a baby one day must deal with mpku syndrome.

When Cole and I are ready to have a baby it is critical that I have my levels low and in range prior to conceiving , the duration of the pregnancy and breastfeeding.

If not there are many great risks to myself but also to the unborn baby. The side effects could be fatal.

For us to have a suscessful future pregnancy my levels need to between 2 to 4 mg/dl as whatever my levels are in my blood are double in the uterus and are toxic.

High levels to a fetus can lead to the baby being born mentally handicapped , disabled ,heart and brain defects , brain damage , microcephaly , poor fetal growth , or more .

Despite how scary this sounds. ..if I maintain my levels and keep myself healthy it is 100 % possible to have a normal pregnancy and healthy baby .

Many women my age have had great success . I have met many inspirational women at my clinic who have perfectly healthy children with no side effects.

Now with our low protein subsidy and support systems I have in place , I am hopeful for the future and dream of the day Cole and I start a family.

At times it is very overwhelming and scary . Sometimes I feel this is the worst part of having pku. Sometimes I think if I didn’t have pku..Cole and I would have already had a baby.

This year we celebrate 10 years together and I turn 29. I always wanted to have a baby before I was 30. It is still my dream but seems to be still out of reach.

Social Media

May 27/ Day 27

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‪#‎pkuphotoaday‬ ‪#‎pku‬ ‪#‎phenylketonuria‬ ‪#‎pkuawarenessmonth‬
May 27 / day 27

Pku shirts.

What a better way to spread awareness then with a total shirt ?

These are my pku shirts . The white one was one I had made for myself from Vista print years ago.

The orange shirt is from our advocacy campaign to get our Government to cover low protein foods and kuvan. We all wore them to our 2012 events and media coverage . Our camping was a success and we achieved our goal of funding for low protein food in BC!

Health minister Terry Lake rewarded bc residents with a 250 dollar monthly subsidy or 3000 a year ! Our coverage began January 2014!

The black t shirt is the shirts we sold to raise funds and support for Avery ride for pku in June 2014. Avery ride for pku was a ride across Canada by Kevin Dube. His neice Avery was born with pku and Kevin wanted to do something for pku. Kevin road coast coast summer 2014 and raised over 60 thousand dollars for pku! It was a huge success

Social Media

May 26 / Day 26

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‪#‎pkuphotoaday‬ ‪#‎pku‬ ‪#‎phenylketonuria‬ ‪#‎pkuawarenessmonth‬

May 26 /day 26

Eat your veggies!

Since having pku means I eat a lot of fruit and veggies I have really taken an interest in growing my own .

For the past 2 years I have quit successful gardens . With inspiration drawing from my mother in law and my sister in law. My mother in law Tracy has the largest garden I have ever seen. It’s half an acer and she grows everything !! I love harvest time at the Rickett ranch. During the summer we get most of our produce from her. I grow at home just what we eat on a daily basis. Salad essentials .

These are some of my seedlings I started inside in April. Ready for transplantation to the outdoor garden this week.

These are tomatoes , broccoli , peppers , onions , pees, celery and asparagus.

I start these seeds in doors and when the ground is ready outside I plant lettuce , carrots , beans , cucumber , radishes ,beats and more. I also planted potatoes this year. They are doing fabulous! !

There is nothing like growing your own food . Knowing exactly what it takes and what is in it. To dig in the earth and make these seeds grow into food.