I am often asked about my career as a Licensed Practical Nurse. I am asked frequently if having PKU and my experiences in health care pointed me towards being a nurse.  Or of I had always dreamed about being a nurse. Honestly becoming a nurse, was not my first choice. I had many ideas prior to deciding . While I was in school I had not thought much about post secondary education. I was a horrible student with a C- average. I failed many subjects and skipped school many many times. I just wanted to be done. My only focus was getting out. My only dreams where of being a mother and a wife. Even though my hole life , until I was 18, I was told I would never be able to have a baby. However that’s a story for another time. I held out hope.

As I started grade 10 in high school, I really started to think more about post secondary, in my heart I always always knew that I would do something. I just didn’t think I was smart enough or good enough. I just knew I wanted to have a post secondary education. My mind swirled with options, One thing that I kept coming back to was, how much  I  enjoyed  was , working at the pre-school. I loved babies. I loved being around young babies and toddlers. I finished school by doing a CAP program and I used work hours as extra credit. I volunteered at 3 pre- school classes a week. Even working at the day care on our high school property where students and teachers who had young children could attend. I began to consider for a while, being an ECE ( early childhood educator) for a long time.

After high school when Cole and I where still new in our relationship, I held various jobs, a beauty specialist at super store, the head cashier at winners, a photographer and sales associate at sears portrait studio. That was one of my most favorite jobs. After that I worked at sears, I was a receptionist at Slegg Lumber, and 2 chiropractic offices. Even with my various jobs, I always thought about post secondary. I had to put it on hold for many years, with injuries, illness, financial set backs , life sort of got away and it was not the right time. I kept applying and looking around though. I had applied at Camosun College twice for ECE and had been accepted but then could not get financing. After I got over my disappointment I began looking at other options , funding and colleges. I than considered a career as a counselor. I spent alot of time in the counselor’s office in school. They really helped me out alot and I wanted to help people. That was the one thing I knew when considering a career of my own. I wanted to work with people, I wanted to make a difference and help people.

Nursing was not even on my radar, One day in 2008 I decided to make an appt with a career counselor at sprott shaw college. Cole and I went in and we talked about my life and my experiences, careers I had considered and why.  joe my career counselor who became my friend, mentioned practical nursing, and something in side my brain clicked. I instantly flashed through my life,  focusing on when I was in highschool, to the time I was fighting my battle with high levels, When I grew sicker and sicker. I needed to be admitted to BC Children’s hospital , twice on long term admissions. I spent a lot of time around nurses and doctors. I was a bit resentful at times to all the authority around me, the people poking and prodding me and testing me. But at the end of the night, my nurses where my angels. They made me feel so comfortable. They helped me more than anything. I remember 3 nurses who impacted my life so much. I was a rebellious teenager and I was away from my friends, my family, my baby siblings and my home. For weeks on end and my family could not visit. I became very attached to a few of my nurses. One nurse in particular, she would end her shift and than come and sit with me, french braid my hair and talk with me about my day. I oped up to her and shared my feelings. I remember her smile and her kindness. I dont think I could have gotten by with out her. The next thing I knew, I was reaching over and signing the papers on the application and admission packages.

The process after that was a whirl wind. It all happened to fast. Next thing I know, I was getting my funding, a student loan and money from Cole. I did all my pre-requisitions, admission tests, doctors visits, immunizations and planing for school. I was registered for classes to begin in February 2009. I signed up in October 2008. In January I was started biology 12 as a pre reg for the course. At the same time, our home had flooded and we where in the middle of a move and has alot of our furniture. I had to finish biology, move and go through an insurance claim all by February to start classes. It was a very busy time.

Once i started school, it became all about my grades. I was determine to be a better student. To focus and to succeed. I did not work while in school, Cole supported us and bought all my low protein food so I could stay healthy and keep my levels low so I could focus, learn and retain what I learnt. My life became all about my grades and meeting my own expectations. If it effected Cole or I or my grades I cut it out. I really learnt who my friends where and lost a few along the way. I wanted to be a good student. I tried hard, studied harder, and tried every single skill on my practicums. There where of course a few moments where I was like ” what did I get myself into” But they where over come with moments where I was fascinated with learning. Everything interested me. I really grew as a person.I came into the course naive, never seeing any one naked expect cole of course ( laughing out loud at that) Blood and bodily fluids freaked me out and I did not have a care aid back ground like most of my classmates. I learnt how to separate though and I obtained what they called “nurses brain” like a switch that gets flicked and takes you away from those feelings and you just do it and over come it. I learnt that even though things use to make me cringe, helping people is what mattered. Looking after my residents or my patients was the my focus, it was all that matters, and it still is. I am helping them, and most times they are as emberessed as I am and grateful for the help. When I am at work, when I am with my residents, nothing phases me. I do everything I can to make them comfortable and happy. Yet nudity on tv and real life still makes me cringe a little with emberessement. Blood bothers me in large amounts but now i just switch on my nurses brain and be confident in my skills and let my hands take over.

Going through school and having the access to the low protein foods , keeping my levels low and feeling clear headed and accomplishment with my great grades, proved to me how important it was for me to maintain lower levels. My PKU and my health need to be the best they can be, so i can be the best me for my patients. One of our classes in school focuses on our rights and responsibilities as a nurse , one of those being related to looking after my body. I know I cannot practice or be a good nurse if my levels are effected. I cannot administer medications or preform a procedure if my brain is foggy. It is my right and my responsibility to my residents to keep my brain safe so I can give safe quality care.

Working shift work is hard on my body and makes it challenging to maintain low levels. Luckily I work in such a great place. I also work 8 hour shifts. On my day shifts I need to bring lunch with me , normally my hardest meal of the day. I tend to bring salads, soups or pizza pops. Afternoon shifts I need to bring dinner. My low protein pasta does not keep well so when I am working I tend to bring mashed potatoes, cream corn and applesauce. On night shifts, I have a snack at 1 am, either something low protein, and than my breakfast at 5 am. Usually low protein bread or a bagel and my formula. luckily in my LCU we have a toaster, kettle and microwave.

Working sporadically and casually for 2 years since graduating , saw a roller coaster of levels due to finances and ability to afford low protein food. The less I worked, the less I could access low protein food. So then it was harder for me to work. Certainly yet another pku roller coaster.

Now since moving to kamloops I have been working regularly , and I filled a night line for 5 months temporarily. Worked casually again in September and last night started back on the night line. I never thought id ever enjoy a night shift , or feel comfortable. However I like the stability. I like having a set schedule and not being on call all the time. It has made it a lot easier to be prepared and pre plan. It is a bit harder to dedicate a day to cooking and baking as I am so tired on my days off , but i think i am adjusting much quicker this time around.

Looking back over the 3 years I have been an LPN , there has been ups and downs, with my body physically and my limitations with my back injury, as well as financially being able to maintain my low protein food usage. I wouldn’t change it for the world though. I know now this is what I was meant to do. I love my residents and have formed many bonds. I love working in just one place, and I love my co workers. I am very happy hear and can see myself doing this for many years to come. I do always have a back up though. If a time came where my back failed me or I was unable to be a nurse, my next best of course is a dietitian! I mean really could it have been anything else?

Traveling with PKU is difficult for me. It is possible, it just takes a lot of prepping, planning and organization. No matter how prepared I think I am , something always throws me off. I think if I was asked what my biggest challenge about trying to be compliant with my diet, I would say traveling . Even though we have never gone very far or traveled by air. The farthest we have been is a road trip to Edmonton Alberta this summer. Even then it was hard for me.  When we lived in Victoria, just traveling to Clinton had its challenges. I always have so much luggage compared to Cole. Even now when we drive out for a weekend it has its challenges.

The most traveling we do is, back home to the island to visit family, to Vancouver for PKU events, and every now and then to visit friends, Edmonton, Castelgar/ Trail, Qusenl and even to Clinton on weekends.

We hope one day to travel father, specially on a nice vacation. Cuba, Mexico or Hawaii.

For now, when we travel for vacations, I always bring a lot with me! usually prepping a few days before and packing the day before so to not miss anything. I bring with me a case of formula, because you never know what may happen. if you decide to stay longer or if something happens. I always feel safer with extra formula. I bring baked foods, such as my pizza pops.  Buns, and a few loafs of bread.  I bring extra water bottles for formula, and lots and lots of straws , even at 27 years old I cannot drink my formula with out them. I also bring all my MIO’s to flavor my formula.  I bring snacks for the road trip such as dried fruit, cereal, and things that don’t need to be heated or cooked. Lots of water, low protein cookies, salad or sand-whiches in Tupperware . Also canned fruit, peaches pears and applesauce. We always take a cooler for those things and anything that needs to be kept cold. We bring a back pack of all the food not needed to store. I also bring my low protein Dayia cheese, So delicious coconut milk, lots of applesauce. I also bring lots of bags of my Aproten Pasta and Rice. Even bring Miracle whip so if all else fails I can make a pasta salad.

So even with all this prepping and planning why do I always fall off track when we go away? Well eating out, eating on the go, eating on the road, and family or friends meals. When you are not in control of what is being made or making it yourself its so much harder.  Or when you are staying with friends and family and you don’t feel comfortable in their kitchen or even cooking in their space.

Even though we bring food for the road, its never what we want to eat, in that moment. It keeps us going but if we have time to stop Cole and I like to get an actual sit down meal in at a restaurant. Then when we are visiting friends or family away from Clinton , like back on the island we have so many people to visit and running around to do, we end up grabbing something in between visits. For me my go to on the go fast food is sushi, my downfall. yam tempera roll and an avocado roll.

Last time we went to Victoria I was taking part in the 30 day young and raw green smoothie challenge so I had all my veggies and fruit with me including my blender and coconut water. Though I totally did not continue after a few days after arriving.

Longer stays are always harder. It usually means more things to pack to. Sometimes I feel like I’m bringing everything but the kitchen sink with me.

When we do finally get to travel abroad, I will have to have a letter for customs for my food and formula and a letter from my doctor at my pku clinic.  I will also have to call ahead to make arrangements with the hotel. I will need to arrange for a kitchenette. When we get a hotel anywhere I always make sure I have at least a fridge and access to a microwave. I usually will research the hotel to see if there is a restaurant and what they serve. Also if they can accommodate me.

When we travel abroad I will also need a letter for extra baggage for my food and formula. I will have a few water bottles and straws , a few packages of formula, and some pizza pops in my carry on. My biggest night mare is that they loose my luggage and my formula. So I plan to keep a week worth of packages in my carry on. I know some people will have their formula shipped ahead to their destination but I think that there is a lot more hassle along with that. I think when we travel I will reach out to my  PKU network and see if there is anyone with PKU in that area that I can connect with, mostly for a meet and great, but also in case of emergency its nice to know they are there. I am more than willing to opening myself to anyone with PKU traveling through kamloops if they need anything or want to meet.

I know many many people who travel with PKU and with little children. It is more than possible, please do not be discouraged.  Instead be encouraged, do not let PKU stop you from traveling and seeing the world. Every day with PKU is planning, prepping and preparing, traveling just takes a little more. I have always said, there is this hole world out there, most people only see it in books and on TV. I want to see it, I want to live it and be apart of it.

I will not let my PKU hold me back, the only thing holding me back from going right now is fiances. There is always something right?

I have had writers block for a while and have been wondering about what to write about so I posted on my PKU facebook profile for suggestions. One of the requests I have gotten a few times now is about dating with PKU or how it effects my relationship with Cole. Cole and I have been together over 8 years now and have been living together for 7 years. I barely notice anymore how PKU impacts our life or our relationship. It is so natural and just a lifestyle. I really have to think back to dating in high school and when Cole and I first started dating.

In high school I had  a few boyfriends, I wasn’t really aloud to date, and If I did I hid it from my home life. I also didn’t really share it that much with my boyfriends or my friends. A lot people didn’t even no I had pku. They knew I had something but I never shared much details. Looking back, I wish I had of shared it with them, it really effected the person that I was . my moods, my drama queen reputation was fueled by my high levels.

None of my boyfriends were really serious. I think the longest non serious boyfriend was on and off 11 months. All at school so never met the families or went out on actual dates. Before Cole I had one serious boyfriend. I thought I was in love and later had my heart smashed to pieces. ( never fully getting over it)  But that door is closed along with that story. As for the PKU side of that relationship, he did know. I spent a lot of time at his house, I even lived there for a while when I ran away from home. I use to do that a lot. I had anger issues from my high levels, This boyfriend knew about my PKU since We dated for along time and spent a lot of time outside of school together and with me at his house so much and so often. I got to know his family and comfortable enough to eat with with them, go out to eat, or to drink my formula and cook in their kitchen. I even left some food and formula there.  I didn’t share how my PKU effected me  , to them it was more allergies and that I had to eat certain foods and I could not eat other foods. I also traveled a bit with him and his family. So when we ate out I just ordered my usual mashed potatoes and grilled vegetables. I did not and have never eaten meat. I just said I was allergic to protein. I did not go into detail like I do now. That boyfriend and I did talk a little more about it because we talked of the future and marriage and babies. So I had to explain MPKU and how important it was to plan ahead and “be careful” . This boy friend was my longest relationship before Cole.

After that relationship crashed and burned I did not have another serious relationship until Cole and carried some deep scares. Was less open and withdrew a lot. I acted out though and was very troubled. When I met Cole I was not looking for a relationship and was very tentative. I was scared as hell. I really liked him and found him very attractive. But I was hurting and my trust was broken. However I made it a point early on with Cole to be open , honest , and very clear about communication. In the beginning when we first met, Cole took me on actual dates, he was a total gentlemen, opening doors, paying for dinner and dates, and thinking up new and exciting dates. When we went out the first couple of times I hid it from him. I was pretty off track with my life, my diet and my levels and eating badly as well as cheating with higher phe foods. I was a lot eating ALOT Of rice!! I remember we went to Boston pizza and I ordered a rice dish of some sort that I know now was really high in phe.

I don’t really remember when I told Cole about my PKU, I think it was when we started to spend more time together after I moved out of my parents place and in with roomates. I think it was after we started staying over at each others houses and when we started cooking for each other. Cole was very interested and asked a lot of questions. He wanted to learn and be involved. I was so shocked and taken back by his interest. I had never shared so much about my PKU with anyone. His interest inspired me to reign back in my bad habits I had developed over the years of cheating and high levels. We began cooking and baking together , Cole took such an interest in finding foods I can eat, making sure I had low protein food and my formula. He bought me my low protein foods because I could not afford them at minim wage as a cashier and since i had moved out my parents place. Cole also drove me to my clinic appts in Vancouver since I didn’t drive. He also came into the appts with me and talked to my clinic staff and asked questions. Cole also taught his family about my PKU and what i could and could not eat. They all embraced my pku and dietary restrictions. I was never left out at family meals and events. I am so blessed to have them as my family now. I am forever grateful for all they have done for me over the years and the way the embraced me and how they care about my health.

Each day I strived to get better and honor their care and interest to my health. I wanted to make them proud and each day i felt better and stronger. Eventually getting off all my meds I was on for sideffects of the high levels. The days became weeks, and weeks became months, then years and life just went on. Working together and celebrating each low level or accomplishment, and working together when things got rough or when we where broke and struggling. Being the team that we are , supporting each other in every way.  There was our share of rough times , I can remember break downs, sitting on the floor of our apartment crying, so far off track and sick of the ups and downs, the freaking pku roller coaster. Cole holding me in his arms saying how we will make a plan and we will get back on track. Making goals talking out a plan and ordering food. Never letting it come between us and bringing us down. It made us stronger and more in love than ever.

Luckily Cole and his family are all pretty healthy eaters so really cole and I eat pretty similar.  We eat our own breakfasts because Cole has always been up before me with his work schedule, but when we are able to eat breakfast together, I like to make my low protein pancakes and pancakes for him. Or he makes us home made hashbrowns, or fried potatoes with veggies.  Lunch is a bit harder. on weekends or when we get a day off together we usually eat diffrent, or I try to match him with something low protein.

Dinner we are usually pretty close. I will either make mashed potatoes, squash, roasted potatoes and some sort of veggies. Than I through some meat in the oven to bake, broil or roast. I have had to learn to cook meat as I like to have dinner made for when Cole gets home from work. I tend to still over cook meat though as I am paranoid about making him sick. Cole also loves salad.

IF I make something low protein for me, like my pasta or pizza or whatever, I try to make the same as him. I have banned rice from my house though do to my addiction to it. So If make myself low protein rice , Cole makes his own dinner or I make him a salad and meat.

We don’t really drink, and if we go out to BBQ or a friends, almost everyone knows about my PKU now and they are happy to accommodate me. If they cant I just bring my own. It does not bother me to eat differently. Now that I am healthy I enjoy food.

My PKU has not been a burden on our relationship or our life. When it comes to diet. Where it is a burden is that we have not had any children. We have been together 8 years as I said, but we have yet to have kids. It is something that weighs on my shoulders so heavily. I feel that If I did not have PKU we may have already had a baby. I want to have a baby so badly. I want to have HIS baby! I want to make a baby with him, to be pregnant and to carry our child. It kills me that I have watched my friends for years have babies. There is nothing I want more then to be Coles wife and to have our child. But I have been on Birth control for many many years and we are no where near agreement on when we will have our first child. I believe Cole does not want to have a baby at all. The idea of it and the risk to him, are not worth it. With each year that goes by, on birth control and childless weighs a bit harder on my heart and my shoulders. It is my fear and my nightmare that i may not be able to have children.

Cole and I talked about it early on and we decided to hold off untill either BC agreed to cover all treatments for PKU, or that a blood phe home testing device was invented so we could see my blood levels instantly instead of having to wait. But each year that goes by that neither of those come to pass, I re evaluate our decision, which leads to a an I HATE PKU day. But I continue to wait, trying to be patient, for the goverment and for cole. I want him to want to have a baby and I wait for the day where he says yes.

If I did not have PKU i know for sure I would have already had kids. AS it is when and if we ever have kids, I only want 1 . I have never wanted more than one. If I can have one healthy happy normal baby, than that is all I can ask for , my dreams would be answered, and would not take the risk again or push my luck. It would be nice to have 2 but I don’t want to set my self up for disappointment or to let myself think about it.  One baby would be enough for me. I would be happy and content because my dreams and my prayers would be fulfilled and I would be blessed.

So you can see, PKU has not really had much of an impact on my relationship, or the way I live my life. I have said this before and been quoted on it many times, I do not let my PKU control me, It is a way of life, a lifestyle and I control it.

I treasure Cole and I love him so much. I am so lucky to have found my soulmate so young and each day is a blessing . I am lucky to be in love with my best friend, and 8 years later to be so in love and happy. His support, his love and his encouragement have helped make me who I am today. I do not know where I would be with out cole. He makes me want to be better to do better, and he inspired me to become the PKU advocate I am today. I am so glad I opened up my life and shared my PKU. Being open about it and sharing with my friends, my family, coles family and my co workers, keeps me accountable and I feel secure knowing the people in my life know about my PKU and accept it as apart of me. I am still me, not my pku.  It does not define me, but it is apart of me. I was not healthy until I embraced it and accepted it.  I am happy to share my story and my PKU with whoever asks me.

It surprises me still to this day when a friend invites us over for dinner and has lots of food I can eat, or when someone stands up for pku, advocates for it or educates others on it. It fills me with pride! I really know that I am cared about.  I feel special and loved. I could not ask for more.