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.