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.
I am PKU Strong 