Phenylketonuria

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    Low protein lunch

    I found some gluten free soft tacos at the Super market recently, only 1.1g protein per taco. Makes for a very easy and delicious lunch 😁
    #Phenylketonuria #lowprotein

    Post

    Wasn’t I always ‘The Queen’?

    Labels

    and titles are a thing we never really give much thought to, or, at least, I

    never did.  The title ‘Queen’ never

    really even fell onto my radar until a few short years ago.  I mean really think about it; you’re born and

    you are someone’s daughter or son, if you have a sibling you’re automatically a

    brother or sister, you grow up you are a mister or miss, then as a girl

    you  marry and become a Mrs.  You have children you’re a mom or dad, then

    as I recently became grandma or grandpa. Then you have professional titles

    & labels: doctor, judge, pastor, and so on. I never thought of Queen as one

    of those professional titles I’d ever achieve or hold because my generation and

    the ones before me knew that as a title bestowed upon a monarch and, yes,

    earned through glitzy and glamorous televised competition. Of course nowadays

    the term queen is used commonly as a term of endearment when a husband refers

    to his wife or kids about their mother, even when we refer to a strong woman. Again,

    the term and title ‘Queen’ wasn’t anything I really ever thought about until

    almost three years ago now. Frankly, at the time, I wasn’t aware of how much

    the journey I was embarking on would change my life, nor how embracing a title

    would affect my life and those around me.

    When

    I originally stumbled across the pageant brainstorm I had it in mind for a

    friend or someone else; anyone else other than me. The obvious flaw in my plan

    was that adult PKU patients, especially, those who’ve been “off-diet” tend to

    be riddled with anxiety, #Agoraphobia, and so many other social issues that make

    it hard for us to function in the “normal realm” I knew this; I have all these

    issues myself. How could I expect them to put themselves out there on display

    for the world if I weren’t willing to myself?

    In

    2017 I started down a path to create awareness for my condition, #Phenylketonuria

    (PKU), mainly to shed light onto the ever growing adult PKU patient population.

    PKU has long been thought of as primarily a childhood condition, but as we know

    children grow up. As far as I had known PKU had never been used as a pageant

    platform and I saw a growing trend in PKU women and girls being ashamed of

    their overall size. Our diets tend to be mainly carb, processed food and high

    calorie based especially if we can’t afford to purchase low protein foods, even

    those foods fit into these categories. Then I found Miss Plus America, not only

    was MPA about celebrating the beauty of all women, but it was very important to

    the system that their queens focus on and work for their platform and their

    platform is very personally important to them. I next worried about what others

    might think or say about me (being over 200 pounds) parading around in a crown

    and calling myself a queen. Now, I have been overly blessed to have a husband

    that tells me every day that I am beautiful, but I still have my days when I

    feel like, I know I could stand to lose weight. I am also blessed with friends

    that remind me almost daily; “you need to

    focus on being healthy and functioning, not your waist size, you know that.

    Happy weight, not what society says is acceptable. You need keep your eye on

    the prize, creating awareness and this is a great creative way.” I bit the

    bullet and contacted Mama Marcella, then spoke with Nanette for my initial interview,

    who at the time was executive director of MPA, and that’s when I heard the

    theme that would resonate in my head from that day forward. I had a mission, I

    had a reason (a good one) and that I’ve always been a queen.

    I’m

    not going to lie. I was not in any way prepared for MPA 2017, I was a hot mess.

    Kansas didn’t have a preliminary pageant established; I would be going in as an

    at-large delegate. Between my medical expenses and life I certainly didn’t have

    the funds to be a real contender, but I put it in my head; I just needed to

    make it there, I just needed to set my feet on the stage. I arrived into a whirlwind

    of makeup, dancing and women from all walks of life. I laughed, I cried, I made

    friends and I told my story over and over. In the end I didn’t place, I had set

    out to do what I wanted to; I brought PKU awareness into the lives of people

    that otherwise never would’ve heard about it. I was very set that I wouldn’t be

    returning in 2018, but throughout the week I got friend request upon friend

    request from my sister queens. The remaining theme I heard from them is

    something I never really heard much in my life, well I guess I did, but I never

    really paid attention, “You are strong,

    you have a purpose and haven’t you always been a queen.”  But I explained time and time again I was not

    doing it again…then I got home. I never realized how many actually watched my

    journey which I shared via FB; former classmates, friends, family, my extended

    global PKU family and now my sister queens. Support poured in from all over. “Are you going to compete again? But you are

    a Queen, you can do this.” I hadn’t realized how much my little experiment affected

    not only the ladies in the PKU community but ladies all around me. I continued

    communicating with my fellow sister queens, they offered not only friendship,

    but spiritual and moral support. They never failed to remind me, “it’s not that crown that makes you a queen,

    it’s what you do and who you are and you are a Queen.” The problem is I was

    pretty sure that I still didn’t believe this myself, but I had learned from my “off-diet”

    years to “fake it until you make it.” For years I had the person I showed the

    world and the person I was at home and with my new PKU treatment working better

    and better I had no use for this “skill” the two had melded into one. I decided

    to use this to develop a new personality; Queen Ozma.

    Queen

    Ozma, who was she? If you’ve followed the Oz series of books you may know her.

    She is the true ruler of Oz, her father was the king was dethroned by the

    wizard. Being Mrs. Kansas the title seemed to fit. Queen Ozma is pure of heart.

    Her movements are dignified, smooth and graceful, her manners imply proper

    etiquette. She is also portrayed as an extremely compassionate and benevolent

    little ruler. Her story was the Cinderella story of Oz and her most famous

    quote was “But in Oz we are loved for

    ourselves alone, and for our kindness to one another, and for our good deeds.”

    I went into MPA 2018 as “Queen Ozma” and introduced my new platform; I was not

    only focusing on PKU awareness, but #RareDisease awareness as a whole. Apparently

    took everyone by storm, but again, I didn’t walk away with a national title,

    but again, this didn’t matter to me. I did what I set out to do. I paced myself

    more, I got out there more for my platform and I owned my crown.

    I

    returned home with a new sense of myself. I was soon contacted by the 2017 Miss

    Plus America Elite Ivonne and her stylist. She asked if she could coach me for

    the 2019 MPA Nationals. While I had aced the interview I hadn’t fared as well

    in stage presence, but off stage I shined. I told her I needed to talk to my

    family first. Which was a short conversation; I spoke to my mom and she asked

    me explain “Queen Ozma”; I did  and I

    told her that I didn’t know if I could do it again, this whole journey was

    about shedding light on my true self, my PKU and my journey and developing “The

    Queen” wasn’t doing that. She responded in way I didn’t expect, she was

    confused because “The Queen” was more like me growing up than I had been in

    decades. My husband responded in a similar way, while he hadn’t know me as a

    child he had heard stories and that he agreed with my mom and what was one more

    round going to hurt.

    Then

    it sunk in when I donned my crown to become Queen Ozma for cosplay at a

    Supernatural convention of all things (They has done a storyline that involved

    Dorothy and Oz, so it seemed like a fun fit). I was asked over and over again

    why I was not on stage for the cosplay contest and could people pose for

    pictures with me for a game they had going on, my initial response was always

    gracious, “Yes, of course, we can take a

    photo.  Do you want to wear the crown for

    one?  My friend and I came for the

    experience. We’ve never cosplayed or been to a convention like this. We collected

    things to donate for the collection drive. I’m in pageants and this was part of

    my stage wear this year, we thought it might be fun for me to try out cosplay.”

    Then I would explain PKU and rare disease awareness. Their response was

    usually about the same and always unexpected, “So, this isn’t cosplay. This is who you are. You’re really a Queen? That is so cool. You should own that, this family is about

    acceptance in who you are. You’re the Rare Queen.” My response soon transitioned

    to; “This isn’t cosplay for me, I’m a

    Queen. I’m Mrs. Kansas Plus America,

    I’m the Rare Queen. This is my first convention and I’m so blessed to be here.”

    The

    writing prompt that inspired this story was “What’s

    a label you identify with – for better or for worse – you never thought you’d

    have before your journey with a health challenge or #Disability?” But the

    thing is I’ve always had my PKU, its part of what make me who I am. It is part

    of my genetics, my DNA and there is nothing wrong with that. It’s funny that it

    took a long winding journey and two separate groups of what were, at the time,

    strangers for me to realize, wasn’t I always The Queen.

    #MyIdentity

    #PKUStrong #RareDisease #SPNFamily #MPA