Well Oly and Lauren left for home today as we leave for our holiday to. We had a wonderful time the 4th of us .it was really great to have them here and I look forward to our next visit.  We had a very nice low key new years eve party to. With Oly, Lauren, Cole and I and Coles brother chris and sister in law Rae-Anne.  After spending the day showing oly and lauren around kamloops , sushi lunch, shopping and buying a wii u we came home and made appies, played wii and rang in the new year. This morning Oly had some of my low protein toast and fruit for breakfast and he said he doesn’t normally eat toast so im glad he liked it. It was so nice to talk pku life and share every day life meal ideas and diet tips. We both agreed to do a blood test soon and keep in touch!

I spent most of my childhood years alone with my PKU. Fighting it and denieing it. I had no one else to talk to who understood me. I spent most of my time around adults telling me how it should be, what I need to do, what was good and what was bad for me and educating me on my PKU life.

I tuned them out mostly and did what I wanted to do . I ate things I shouldn’t, tried things here and there, cheated, though my formula down the sink and lied about what I was eating.  Putting off blood tests and fighting with my mom over meal planning and menus.

I had no friends with PKU and had never met anyone with PKU. At least that I could remember.

When I started middle school Things really got rocky and more difficult with me, and my levels so out of control. I needed alot more help in school. The darkness that I was living in was dragging me down and making every day life hard. I started to see the school counselors a lot, skipping classes to be there almost every day. I grew connected to one of my school counselors over time and developed a relationship. We stayed in contact long after my middle school years.

Sometime into our sessions, I mentioned my pku, and really learnt how small of a world it was. She new someone with PKU too!! A friends son the same age as me. Who lives in Vancouver and went to the same clinic as I did.

The first time I was admitted to BC Children’s Hospital to be withdrawn from high levels a few calls where made and Oliver and his mom came to meet me.  nearly 14 years ago now. We hit it off and even had a young romance. Dating for a while, and trying to maintain it long distance after I left the hospital.

I learnt a lot from Oliver, our PKU lives where so different and I was so amazed to meet some one else. We kept in contact over the years, even went to appointments together, and tried to visit each other when we could.  Ollie visited me in the hospital both times I was admitted and even took me out on hospital day passes. Ollie showed me around Vancouver, we had a pretty free roam of the city. We road the sky train, walked around down town, Ollie took me to one of the tallest buildings a rotating restaurant to look at the view, ride the sea buss and just all over. We made some good memories.  Eventually we transitioned to the adult clinic together.  Then soon after life took a different path and we went our separate ways, briefly connecting in passing.

However, after the last PKU event in Vancouver we re connected again, and now hes actually here!! Ollie and his fiance have been staying with us for a few days and its been so great having him hear, Reflecting over the good times and the bad times  , old memories, and talking about how our PKU lives have evolved. Sharing recipes, and trying foods. Cooking for each other, talking about changes in PKU treatment and our hopes for the future.  Sharing our excitement for the new food subsidy and how we plan to get back on track.

Its been fun sharing my knowledge with him, and showing him my baking and cooking skills and just daily routine stuff.  The first night they came , I made a big Ham dinner as the wheeler family was here too and the kids. I made mashed potatoes, mushroom caps with dayiah cheese and steamed carrots for Ollie and I.

The second day , I made low protein Blue berry pancakes for breakfast and then we all went to all you can eat sushi , Ollie and I had Vegetable sushi, yam sushi, avocado sushi and cucumber sushi.

I slept late because I had to work and so Ollie made me dinner! Pasta with low protein bread bruchettea that was really good. He made mushrooms, onions and tomatoes and olive oil.

Last night I made my version of a low protein of pasta salad.

Tonight I am thinking of making squash or my version of lower protein scallop potatoes and stir fry. I have also made 2 loafs of bread and a dozen pizza pops this morning.  I am going to see if Ollie and I can make some perogies later to for new years eve party.

I have really enjoyed having them here and am happy to have my friend back , rediscovering our bond and becoming friends again.

So I wanted to share a basic back ground and a post dedicated to Ollie. My first PKU friend. The first person I met in person that started my need to connect with others around the world.  It showed me how it was like to talk to someone on a different level who gets it much more deeper than doctors, deiticans and medical staff.  Having a PKU friend goes such a long way. I am so glad Ollie and I have re connected!

 

As the Holidays come to a close, and the new year approaches we yet again begin to reflect on the ups and downs of 2013 and what we want to change for 2014. Making new years resolutions that if we are lucky will last about 3 months before we forget . January brings a time of hope, new beginning, fresh starts, and the busiest  time of year for the gyms.

Every year most of us promise our selves we will finally loose that weight, we will be healthy, change our life styles and get into shape. If only it was that easy.

I almost don’t want to make a new years resolution this year, as I have never achieved one yet. Than I decided that maybe its the physiological aspect that’s really holding us back from achieving our resolution, or maybe its the fact that I always make the same one every year.

So this year I am going to try something different. I have been reflecting the last month or so on what changes I want to make for 2014 and have decided to start right at the beginning with changing my resolution.

This year my new years resolution, is to be better with money. I want to save money, and be smarter with my spending. I want to stay out of my over draft, and my credit card debut and I plan to do this by setting myself a budget and paying off my debut right in January.  I would like to put money away for a few different things so since I have a credit union I have opened up a few different savings accounts and labelled them for the goals I hope to achieve.

I have various accounts for : Travel, House Renovations ( kitchen and bathroom) , Future wedding, Having a baby, slush fund/ emergency fund, my LPN annual fees and also a Christmas account. Every year I go in to debut at Christmas, because I do not save all year round for it even though it always comes. This year id like to put the money away a head of time. so when the holidays come around again , I don’t put myself into debut.

So this is my new years plan, but along with my resolution , I am setting goals for myself. I am not calling them new years resolutions, I am writing them down as things I want to achieve , a big goal at the end and then little goals along the way to measure my progress.

So of course my number 1 over all goal is of course yet again weight loss. I need to loose about 50 lbs. I am very over weight. Obese type 1 I am told. This is very depressing for me. I have struggled all my life with my weight and i’m sick and tired of it. It effects every aspect of my life. My lack of self esteem and my confidence. my own body image and self worth. I am letting it torment me and control me. It effects my daily life, my relationship and my soul. I hate looking in the mirrors, I have no clothes that fit nicely, I see faults every where, to the rolls in my tummy, the flab in my arms and back and even my legs. or my new double chin. Its wearing me out emotionally and physically and its keeping me held down. Its a constant battle I fight with my self, but yet I do nothing about it. I have gotten lazy and make excuses all the time. I am no where near as active as I want to be. I cannot keep up with Cole , our my friends. I let it hold me back from trying new things or even just going out. I don’t feel normal or pretty, I feel frumpy. I am most comfortable in a t-shirt and yoga pants because jeans make me feel fat, I have gone up 3 pant sizes since the summer.

For me loosing weight is so discouraging. The more low protein I eat the more weight I gain. When my levels are really low and I’m doing so well with my PKU , for example when I was keeping my levels consistently under 5, I gained 10 lbs. Then I stopped eating low protein food for a few months, tried to eat more regular food, my levels went up to 9.8 and I lost 4 lbs. I cant seem to win.  Its a roller coaster ride and I am sick of the up and down. falling off track , hitting rock bottom and pulling my way out again and making that slow steady climb back up. I am tired of feeling like I have to choose between my levels and weight.

So it is my goal to quit making excuses, to finally start looking after my body and making a real effort this year. I am making it not just about loosing weight, I am making it about the hole. Making my body healthy. Taking the year to focus on my levels, my weight, my chronic pain, my anxiety and depression. In stages, with steps along the way. Slowly starting one thing at a time and increasing and combing them together. My ultimate goal is to get my body ready and healthy so that I can finally have a baby . With the new food subsidy starting tomorrow that will take the stress off being financially able to maintain my levels and give me more time to focus on learning to retrain my mind and my body. To focus on portion sizes and the different food groups. For meal planning and preparation. Than to work on a activity schedule as I am not calling it a work out schedule, that never helps. I want to try new activities and new sports  , new things, not just going to a gym. I want to me more active.  Then I eventually want to come off almost all my medications. at least my pain medications and supplements. I do not want to mess around with my anti depressants at the moment but eventually them too. I want to keep my levels under 5 so that when Cole and I decide we want to have a baby I will have already been successful with the pre conception diet and will have my body adjusted so it will be easier to have a successful pregnancy with low levels.

I know it sounds like a lot, but im head I am breaking it down into categories and prioritizing each one with steps and goals to help monitor my progress but also to help me see results and not get discouraged. I am feeling optimistic and think but changing the way I think and the way I set my goals and resolutions that this year will be more successful and I am looking forward to the future of 2014 with happiness.

I want to take this time in closing to wish you all , my friends, my family, my PKU friends, followers and fans , a Very happy 2014 full of peace, love , joy health and happiness!

Happy New Year ,

From Cole, Figaro ( our cat) and I !

Merry Christmas everyone . Best wishes of love, health ,happiness, joy , and  peace. I hope everyone is having a wonderful day with family and friends!

 

 

 

Sharing a few of my photos with you on this count down till Christmas to share a little holiday cheer. I just love Christmas time and decorating. Cole and I got a real tree again this year and though we didn’t have time to go out into the woods and cut one down, we picked out a lovely one from coopers. Coopers brought some in from the tree farm down from our house. We had a Christmas party last weekend with friends so I had to get the house decorated before the party. 

Almost finished my Christmas shopping, just have a few more small things to pick up and Stocking Stuffers for Cole. 

The next few weeks are going to be pretty busy so I wont be able to be on-line as much but I will be checking back now and then. 

After Christmas my good friend Oliver , who has PKU like me and was the first person I ever met with PKU back when I was 13 is coming to visit us for a few days. With his Fiancée. I am really looking forward to seeing them! 

As well our good friends Nick and Daphne and their 2 little girls will be stopping in on there way back from the island on their way home to Edmonton. So lots of visits with friends and family and of course work in between. 

I hope everyone has a truly magical and wonderful Christmas and send you all well wishes , of health, happiness , love and peace for 2014~ 

I had been contemplating sharing this next blog post with you for about a month, but have decided to share it as I did after all agree to be forthcoming and honest with my PKU life for my followers.

Back in November I had a terrible disagreement with a long time good friend who I value you alot. So I was quiet upset for a while, Though we have moved past it , I wanted to share how I feel now that I can step back and look at the situation un emotional.

The discussion completely blind sided me and I was not expecting it. My friend told me that she felt that I am consumed by my PKU and as well on a sickness . She felt that it cant be good for my mental state and was concerned how all I ever do is talk about how sick I am and that its unhealthy to be so wrapped up in my sickness. She said she felt that I’m making myself sicker than I am .  That I play into things to much and I should be more grateful that I don’t have something more serious and life threatening. She said that I play myself as a victim with PKU.

I was so taken back and offended that anyone would feel this way or say these things. I still cannot wrap my head around this and feel it was way out of line and of base. I am proud to have PKU. It has give me so much life experience and skills to better my life and those around me.  I do not see myself as unlucky, unhealthy or a victim. I feel stronger and empowered.

For those of you who know me , really know me, know that what I do for PKU brings me great Joy. I do not see it as something that is making me sick, I AM NOT SICK WITH PKU, I do not dwell on the fact that I have PKU. My goal and my purpose is to educate others, help others, create and spread awareness for PKU, advocate to the government to improve treatments and quality of life for those who have been born with PKU. To help others around the world obtain the level of care we enjoy here in Canada, and to help others who struggle as I HAD IN THE PAST!!

What hurt the most is that my friend and I have been friends for 11 years and hearing her feelings like this made me feel that maybe she really dosent know me and how hard I work for others. It hurt to think my actions could be precieved this way and that my  friend says shes not the only one who feels this way about me and that others  have talked to her about it. Which essentially to me means that people who I thought where my friends have been talking   behind my back . That my “friends” have expressed that they think  how I have let this consume and take over my life and there is more to life. Well in that case, there not real friends. No one has ever approached me before or expressed these thoughts and feelings. This experience is the first I have had with negativity towards my life style. I had not felt anything other than support.

My friend asked me if I wanted to only be know as the girl with PKU for the rest of my life, and for me that is a very easy answer. Yes! I am OK with that, because I strive to be the change I want to see.  I want to push PKU treatment and health care forward and impact others lives, giving them the quality of life that we all deserve as human beings.

I am proud of how far I have come and how full of a life I have been leading. Having PKU has given me a passion, I have embraced it and accepted it. I am not unhealthy , I am stronger for it.

Not every day easy, all of us who have PKU or a loved one with PKU know what a roller coaster it can be and how hard we all work . Specially if you are an adult off diet, a women on the MPKU diet, a child struggling to maintain your diet or anything else . I do not sit here and feel sorry for myself and I keep a positive attitude. Does it suck  ? yes sometimes it does! Is it hard? yes sometimes it is, Do I wish that I didnt have PKU? sometimes, but I know I could never eat any animal products or meat.

The hardest thing is the side effects I suffer from having high levels as  a teenager and when my levels spike now or if I have fallen off track and am struggling to re gain control of my phe levels. But I accept it and know that its my own fault that my levels where high or fallen off track. There is no point to be bitter, to play the blame game, or to fault everyone else and the health care system for my weaknesses, not everything is PKU related and I know that. So I just do my best and take one day at a time.

I am still me, a hole person, with many things that make me who I am , PKU is just one of the things that makes me unique and my life is a bit different but really is there anyone who can say they are normal? I mean what even is normal? We all have something or end up with something. It is what we do with it that defines us as a person. My life with PKU has given me experience to stand up and use my voice to better PKU care, and If I had something other than PKU for example Diabetes than I would stand up and use my voice for that as well and encourage anyone who has something else to do the same. I dont use my passion for anything else other than PKU because PKU is what I know and it is personal for me, but I support friends and family and community members when they have something they are passionate about and trying to create change or are simply living with something else. Maybe that is also the nurse in me? PKU is one of the reasons I became a nurse and when I learn about other disorders and diseases I think I have more compassion because I can understand more then someone else. I love learning and will do what I can to support others.

My sister says I am passionate for PKU, and I am. I am OK with that.

Though its never easy to have an experience like this with a good close friend, I have learned from it , taken a step back and instead of being upset , angry or crying I can stand tall and say no , they are wrong. I do not doubt myself or am I re thinking my actions. I stand confident that I know this person described my friend is not me. I just hope one day, she sees that too.

 

Well I am borrowing my good friend Claudia’a lap top and am slowly getting back to emails , messages and planning my next blog post. I have ideas whirling around in my head but they have not reached my finger tips . The past few weeks , well months maybe have been very tough. I am feeling quiet overwhelmed but haven’t found a way out yet. I do feel like I am reaching the surface though, that it is in reach.  I have been in a rut and mostly just working. I think night shifts are catching up with me. I miss Cole. We work opposite shifts, Cole works Monday through Friday, and I work Thursday to Sunday nights and sleep while Cole is off. On my days off I stay home or hang out with Claudia. Its just the same every week. Its been hard to keep active or even feel happy but I am dealing and I am carrying on.  I did got swimming with Katie and it was fantastic to be in the water very therapeutic. It was also a snow day we got 4 inches of fresh powdery snow. So in the spirit of the season I have been busying myself with decorating and cleaning the house, cooking and Christmas shopping. I just have Cole left to do now. His main gift and stocking stuffers.

Tonight is my Friday at work so when I go home I am off for a couple days. I plan to finish up my shopping and the house needs al ot of cleaning. we had a Christmas party on Saturday evening before work. Claudia , Casey, Tom, Cole, Rae-Anne and Katie. We made lots of fresh appys, veggies, cookies, hot chocolate, apple cider, tea, spring rolls, and it was a great time. It was very nice to socialize with friends and relax.  So I am going to step back and take a little time on this next set of days off and relax, spend time with Cole, enjoy our beautiful Christmas tree, and our decorations, spend time with friends , go to the gym, go swimming, baking and cooking and spend time with Claudia.

I am going to continue to think about my next blog post and try to coax it into words . I haven’t written in some time I know I just havent found the words but they are there swirling around beginning to take shapes as sentences. so be sure to check back soon.

 

I look forward to re connecting to the PKU community and keeping this more up to date!

 

 

My  laptop is broken , I can’t afford a new one right now , so I am with out a computer for a few months. Until I can save up.  I have my tablet and phone but it will be frustrating to do much on them . so please bare with me if I don’t respond to messages and emails right away. Also my blogs ,fan page and groups will be effected during this time. Thank you for understanding. This effects me much more and it will be difficult to keep connected at this time. Blogging and long emails are difficult to type out on this tablet one finger one letter at a time.  I’m hoping to be able to afford a new lap top by February. Going with out for that long will be extremely difficult and a real adjustment for me. Specially on night shifts !!! 

 

I use my laptop for everything even photo editing my Christmas photo gifts and even watching TV, download movies , TV shows , music and Netflix!! 

I’ll be sure to let everyone know when I get a new lap top and back on line fully. 

Well I managed to get my get up and go going this morning. I woke up early again. Seems to be a pattern on my days off. Up at 5 am, had low protein scrambled eggs and apple cinnamon pancakes for breakfast, than I had a bath. Went to yoga for an hour, went to the gym for an hour. I did 30 mins of cardio on the elliptical, 20 mins on the weight circuit, 10 mins of stretching.  It was nice I had the hole gym to myself so I shut of their TV and turned on my music on my cell phone but didn’t plug in the headphones, propped my phone up against a shelf and went about my work out. After I went to the grocery store, to get my align and a few ingredients for a new fall dessert my sister invented. I came home and made 2 loafs of low protein bread, my sisters fall dessert recipe, started a big pot of home made soup, that is still slow cooking , made a low protein pasta salad for lunch then went to bed to have a nap before work.

So yup its been a busy day, but a good day.  I still want to make banana bread and apple crisp but maybe tomorrow. At least I will have enough to eat tonight!