Operation Blood Test Desensitization

Blood tests…anyone who knows me, knows that I hate them. I don’t like needles, lancets or blood. I never have, and I probably never will.

After almost twenty-eight years of dealing with this phobia (because to be honest it’s more than just ‘I don’t like them’…it’s an actual fear that gives me very real, very intense anxiety), I am determined to get to a point where I can at least do a blood test without freaking out. I’m sick of pacing our living room floor every time I try to do a level, and I know it’ll be hell someday when we want to have kids if I don’t get this under control. Thus Operation Blood Test Desensitization has begun!

I have officially done three blood tests in 2019! I didn’t do my first phe level of the year until early April, but since then I have sent one in every three weeks. My hope is that I will become more comfortable doing blood tests if I start doing them more consistently. Like maybe eventually I’ll just get used to it. Hopefully my logic works?

So far, level wise, I’m doing okay: 5.0, 4.5 and 5.9 mg/dL. These levels are a little higher than I am used to. They’re still within range though, so I’m not super concerned. Right now my main focus is beating this anxiety. I’ll worry about getting my phe levels lower later on (assuming they don’t get higher — obviously if they go up more I’ll start making dietary changes).

Wish me luck! For the first time in my life, I’m making this a priority, and I’m determined to see this through. If you’ve got tips share them below. I feel like I’ve tried everything just short of counseling, but who knows…maybe someone can suggest something I haven’t thought of yet.

Coping with Milestones and Life Changing Events

Those who know me know that I try to maintain a positive outlook on my PKU as much as possible. After all it is just a diet. Even with formula, Kuvan, blood tests and the extra preparation that goes into feeding myself, I know that I am still super blessed to have the life that I do.

I have a huge, supportive family. I am chasing my dreams by running my own dance studio. As a preschool teacher I have the privilege of interacting with some pretty awesome little humans. I have a super rambunctious puppy, Ari, who I love more than anything, and a less friendly but still very love-able cat named Ginger. And most importantly I am marrying the man of my dreams and my best friend, Nathan, this August (92 days and counting!). We own a home together, and I cannot wait to see where our future takes us.

So much has happened in the four years since I have last written a blog, and as usual when life gets busy, PKU has fallen into the background. Most days I have done fantastic with silently managing my diet. Once in awhile I struggle, but that’s to be expected and regardless I continue to be thankful that my situation isn’t worse.

However, I am learning that it isn’t always easy to put a smile on my face when I am experiencing a new milestone for the first time…because frankly our society puts so much emphasis on food in social settings and it can be a huge bummer when you’re reminded of your medical condition.

I remember being in sixth grade and attending my end-of-the-year camping trip with the kids in my class AND the students from the four other elementary schools in our school district. The trip itself was fantastic: canoeing, fishing, archery, campfires, etc. Everything an eleven year old could hope for! To this day I still remember most of the campfire songs that we sang. However, I also remember that one night all of the other students were surprised with cookies…cookies that I couldn’t eat. This may seem minuscule, but it was hard navigating this situation surrounded by kids who just met me and didn’t know anything about my PKU. My mom was fantastic about keeping me calm, and my teacher even stepped in to help. Obviously I lived to tell the tale, but it was difficult. I wouldn’t have handled it as well if it hadn’t been for their support.

Years later college came. I struggled a lot. There wasn’t much on campus for me to eat, and I had no clue what to do so I spent the majority of my first year of college eating salads and fries. I know, fries all the time, that’s like the ultimate dream for anyone who has PKU! Partially true, but it got old after awhile and probably wasn’t the healthiest either. Eventually my mom (super mom to the rescue again!) stepped in and got my expensive meal plan refunded since I wasn’t being provided adequate food, and I was able to stock up on low protein foods instead. Again, I totally survived and continued on to experience a smooth-sailing college life in terms of food, but for a blip in time it was stressful.

Fast forward to the present date, and I am planning one of the most important moments of my life: my wedding day. The day my best friend and I vow to always be there for one another. The day when both of our families will come together to celebrate us. The day that will change our lives forever. Anyone who has ever planned a wedding knows that it’s no joke! There’s venue tours, photographer portfolios to look at, DJ’s to meet, officiants to book, florists to find, centerpieces to make and…food tasting.

Everyone told me that wedding planning would some of the most jam-packed, exciting and memorable moments in my life. For the most part it has been, but no one told me the anxiety I would have leading up to food tasting, because I was terrified there would be nothing for me to sample. No one told me about the brick that would hit my chest as I started crying over salads in front of my fiancé, mother, mother-in-law and our wedding planner. No one told me how worried I would be that my two sisters who also have PKU (one with a much lower tolerance than me) would have food to eat. My mom, who I’m sure was shocked and devastated when I started sobbing, did her best to diffuse the situation. Later when telling my older sister what happened she sympathized with the whole situation. She doesn’t have PKU, but I think she remembers how uncomfortable it was when we were younger and went places that didn’t have food for me. Honestly? Although we aren’t completely out of the woods with this whole wedding thing, just knowing someone understood why I got upset helped and has alleviated a lot of my anxiety.

Anyway, now that I’ve rambled my point is this: I’ve noticed that I tend to struggle with new milestones or change when it comes to PKU. Once I become a little more comfortable with each change I tend to be okay. I find a new “normal” and figure out how to handle PKU in that new situation, and then all is well again. I struggled when meeting new kids as our school districts elementary schools merged into one middle school. I struggled with moving away to college, and now I’m struggling with wedding planning. I know there will be more struggles as I get older, but what has helped me the most? Support. Having family and friends look out for me as I figure this crazy thing called life out. The support my family and friends have given me has helped tremendously with reminding me that everything will be okay and what may momentarily feel like a huge deal will later seem tiny.

As your family member with PKU is experiencing life changes reach out to them. Make sure that they are transitioning to each new stage of life with ease and offer a hand or listening ear when needed. Those who have PKU: don’t be afraid to seek out help! I know for a fact I would not have been able to move on from these bumps in the road as easily if it hadn’t been for my mom, my teacher, my sister and so many more who have let me lean on them! And don’t forget that even if it’s hard right now, that doesn’t mean it will be like that forever. Life wasn’t meant to be easy all the time!

Do Unto Others…

Wow! I have not blogged in a very long time: seven months to be exact! I suppose that is what happens when life takes over :). Anyway at this point I don’t even know if this blog will end up related to PKU, so if it turns into a random vent about non related topics I apologize. Please bear with me. I have a lot on my mind that needs to be said regardless of whether or not anyone will actually end up reading it.

Lately it seems like everyone is on some sort of diet. Most people who are on a diet and/or working out are doing so to get themselves to a healthier weight. I have no problem with this. I am a firm believer that everyone is entitled to do what they feel is best for their health, and I applaud those who are trying to do right by their bodies. In a world where junk food is sold at literately every store it takes a lot of will power to eat healthy. However, what I find really difficult to accept lately is the overwhelming amount of individuals who are on weight loss diets and/or working out and think it is okay to disrespect me, because I don’t understand what it’s like to try to lose weight.

You’re right. I don’t know what it feels like to try to lose weight, and until I am in that position I would never claim that I do. Despite never being in that situation though I always do my absolute best to be positive and encouraging to friends who are trying to reach a healthier weight. They probably already beat themselves up enough over junk food they said they wouldn’t eat but did anyway, the trip to the gym that they never took, or the fact that they are not losing weight as quickly as they hoped. They don’t need me adding to their stress. I would never in a million years think to tell another individual, “You should eat a salad,” or “You need to go to the gym.” That would be rude and absurd. I am sure everyone would agree, that isn’t something you say to another human being…it’s just not. So riddle me this then: why is it okay for to degrade thin people with rude comments about their body size?

Recently while talking with a group of friends the topic of healthy eating was brought up. One of my friends commented that she stopped eating out. She figured she would accomplish her weight loss goal quicker by cutting fast food from her diet. As the conversation progressed I commented how I also cut back eating out and that I am down to only allowing myself to do so if I have left over cash from babysitting (an improvement from using my card and eating out several times a week!). I want to pack my meals, because it’s healthier (both in general and in regards to PKU) and it will save me tons of money. She got snappy and told me in a very curt tone, as if my opinion didn’t matter, “Oh whatever! You’re skinny. You can eat out. Go eat a doughnut.” (Disregard the fact that I technically really can’t eat doughnuts…)

I was so offended! If I would have told her “Oh whatever! You’re fat. You can’t eat out. Go eat a salad,” I would be labeled as a horrible person. A comment like that would be 100% unacceptable by any standards…as it should be. Her comment though, was some how okay? Huh? Even if it was her emotions that caused her to say what she did, it’s still not right. Taunting a larger individual about their body is wrong, and belittling someone who is smaller is as well. If it’s not your body, then you have no right to criticize it. Period.

I just can’t comprehend our societies sense of ‘one way is right, the other is wrong, and the one that is wrong needs to be squashed.’ Take a look at the media, and you will see thousands of examples of this! It’s in Dove’s advertisement for Dove Firming where they clearly state that it is ‘tested on real curves’ (implying that there is something fake about a body my size…?). They did the same thing in response to the ‘Love My Body’ campaign and called it the ‘Real Beauty’ campaign. While I get what Dove was trying to do and fully understand that Victoria Secrets models are highly edited (so perhaps that is what Dove meant by ‘real’), it still supports the idea that only one option can be right and we need to put down the ‘wrong’ option.

Anyway, I digress! The point is, I am really disgusted and offended by this obvious double standard. What’s really grated on my nerves is the fact that these friends who have been on a diet for weeks or maybe months can be so rude when my only intention was to be encouraging. Perhaps they forgot that I have been on a diet for almost twenty-four years now! Granted it is a diet of the medically necessary variety, so it is certainly not by my choice. However, assuming I don’t know what it’s like to want to eat something that I can’t or to eat something and then feel bad about it later is silly. I’ve been there, done that. Are my circumstances slightly different? Yes. Absolutely! However, I know a little more about restricting food than most people realize AND when I decide I’m done monitoring what I eat I don’t get the luxury of dropping my diet. I either maintain this diet, or I risk detrimental effects to my health…

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PS In the end this blog was aimed more towards my strong dislike for rude people than anything else, so I apologize to anyone looking for a ‘PKU related’ topic. I promise my next blog will be ‘PKU related.’ I also want to point out that I have NOTHING against individuals of any certain body type. In my opinion health is more important than looks. I am tired of people who feel it is okay to treat others one way only to expect to be treated a different way though. Whatever happened to ‘do unto others as you’d have them do unto you’? This goes for far more than just people discussing healthy eating. For example, I’ve had parents at work lose their marbles and yell at me for the smallest reasons while still expecting me to be completely polite. If you want me to be polite to you, then you need to be polite to me. If you don’t want me laughing at your meal choices or body type, then respect my body to. I deserve to be respected! The whole ‘go eat a doughnut’ dilemma was the current example of rude people that has been bugging me, so that is the rant you got to hear today. Sorry lol!

Thank you…

Thank you.

This simple phrase is one that many of us could recite at a young age. We were taught that it’s kind and courteous to show our appreciation by saying thank you. We were told that giving thanks is a part of this concept of ‘good manners,’ and that by saying thank you we were being polite. What we weren’t told is the true impact saying thank you can have. We weren’t told that these two words can uplift someone and brighten their day when they need it most. We weren’t told that it can remind another person that their efforts are appreciated, and it can encourage that same person to continue those efforts.

This past Sunday the world said goodbye to a very beautiful soul. That person was Kelli, a woman who had PKU. I had the fortunate opportunity to get to know Kelli through a PKU forum several years ago as a young teen. Although we never met in person, that did not stop her from providing as much support as she could during a time when my outlook on PKU was much different than it is today. It didn’t matter how silly or petty my concerns were, she was always willing to listen and had an abundant amount of encouragement to offer. In fact, she was often the one to remind me that these obstacles I was facing would one day be so miniscule in the grand scheme of things that they weren’t worth stressing over. For that I will forever be grateful. I never said thank you though, and I don’t know that she ever knew what a vast impact she truly had on my life.

Obviously I cannot go back in time and say thank you. However, I can thank those who are still in my life. So to my parents thank you for everything. Thank you for giving me a life that many people would die for. Thank you for providing for me, supporting me, and loving me through both the good and the bad. I wouldn’t be where I am today without you! Thank you to my siblings for putting up with me for the past twenty-three years. I know I am insane, but somehow you still love me (er…at least I hope you do LOL). To those who I met all those years ago on PKUboard.info and the PKU group on MSN thank you for shedding light into the mind of a confused teenager. To the more pleasant medical professionals that I have had the privilege to work with thank you for trying to understand me, for being my ‘cheerleaders,’ and for believing in me. It gave me to will power to take charge of my life and do what’s right for myself and my health. And to those doctors and dietitians who were not as supportive thank you as well. You taught me what it means to be strong. You taught me how to advocate for myself and how to get both what I want and need! To all of my PKU friends (both those that I have met in person and those who I have only ever chatted with via the internet) thank you for your friendship and support. I have always been a firm believer that support is the key to successful treatment, and you all have been a testament to that!

If you get the chance today, tell someone thank you. Whether it is someone who was brought into your life by PKU or not they deserve to know they are appreciated. Like I said, saying thank you can have a bigger impact on someone’s life than we realize. If someone has had a positive impact on your life it’s only fitting that you (hopefully) positively impact theirs by expressing your appreciation. You never know if you’ll get another chance to say thank you.

Thank you for reading ;).

Phe allowance vs. phe range

For as long as I can remember I have always been given one specific number in regards to my phe tolerance. I have always been told to consume X amount of phe—no more and no less. As you can imagine, and if you have PKU I am sure you understand, this leaves little room for flexibility. Sticking to this allowance so rigidly can mean adding high phe items to your formula if you are short some phe. Often times it also means not eating at the end of the day even when you are hungry.

For nearly two years my levels have been coming back ridiculously low; never higher than 1.7 mg/dl. As wonderful as this might sound sometimes low levels can cause just as many issues as high ones. For nearly two years I did exactly as I was told, and my phe levels continued to come back extremely low. Each time I was told that I need to get all of my phe in. No one ever thought ‘gee if her levels are coming back consistently low maybe her tolerance is actually higher than what we have been telling her.’ It never occurred to anyone on my medical team that maybe they were giving me the wrong number to aim for.

Have no fear though, because I eventually figured the problem out, albeit on my own. I just wasn’t okay with accepting that I was apparently doing something wrong and not complying with my diet. Being the stubborn person that I am after my level came back as 0.3 mg/dl and I was once again told I need to follow my diet better I decided enough was enough. To make a long story short I told my dietitian that I was increasing my phe intake, because clearly I needed more. I took things into my own hands and increased my tolerance by 300 mg of phe. Surprise! Surprise! My level came back as 3.6 mg/dl! That was the highest it had been in two years! After that I decided to be adventurous, and I increased my phe again. I did two blood tests at this higher allowance after my second increase, and both levels came back on the lower end of five.

Here’s my question: my level was good when I was consuming both 1200 and 1500 mg of phe, so why do I need to stick to one specific amount? I tend to aim closer to 1200 mg of phe, because I would prefer my levels to be lower. However, on days when I am still hungry late at night why can’t I go up to 1500 mg of phe since I know my level will still come back in a safe range? What’s wrong with eating a little more if you know your level will still come back okay? It just makes me wonder how high can others with PKU go before their levels get too high, and should I be thinking about my tolerance as 1200-1500 mg of phe each day rather than just 1200 mg of phe? This new thinking allows so much more flexibility in my diet. I wonder if we would have more people ‘complying’ with the diet if we thought about it in these terms and were able to find a lower and upper limit for phe and aim for something in the middle knowing that we could go slightly lower or higher if needed. This just seems more realistic then saying ‘eat this amount and only this amount.’ It seems more flexible for the busy lives that I am sure we all lead.

Any thoughts? Has anyone else ever decided to push the limits a little bit and think about their tolerance more as a range rather than one specific amount? Just curious if I am the only one who has found that they can actually tolerate more phe while still having good levels. I guess this is another reason why we need to be our own/our children’s advocates. If I hadn’t taken charge of figuring out what my tolerance really was I never would have made this discover, although the reason why I had to do the figuring out in this case is a blog for another day :|.

((Just to clarify my tolerance was 900 mg of phe. I admit increasing by 300 mg of phe was pretty ambitious, but this increase wasn’t nearly as insane as it would be for someone with a lower tolerance))

A Letter to the Medical Professionals

Dear Medical Professionals,

A recent message to the List Serv from a woman who was unhappy with the medical care her daughter is receiving has compelled me to write this.

I know that your jobs probably require long, exhausting hours, and the last thing you want is to be told how to care for your patients. My goal is not to upset anyone, and this isn’t directed at any specific person. I give all of the doctors, dietitians, genetic counselors, etc. props for all that they do! So many of you are amazing, and I wouldn’t be who I am today if it wasn’t for some of the awesome medical professionals who came into my life. Think of this more as friendly food for your thought.

Next time you are seeing a patient keep in mind that…

1. We are people first and people living with a genetic disorder second. If we forget to draw blood or send you a diet record understand that we attend school, work, extracurricular activities, and so on just like everyone else. We are trying our best, we really are. We’re just trying to lead lives outside of the medical world as well.

2. Some of us aren’t as clueless as you might think we are, so please don’t be offended if we want to try something our way first before doing it your way. It’s just that many of us adults and parents of older PKU children have been dealing with PKU long enough to have a few tricks up our sleeves.

3. Most of us want to have a positive relationship with our medical team. We like it when you get to know us as a person. It makes us feel as if we are more than just a name with a disorder slapped next to it, and we are more likely to trust you if you show us that you truly care.

4. We need you to stop and ask yourself if the medical advice you are giving us is really practical. If it’s not chances are we aren’t going to be able to do what you are asking of us, because sometimes it’s easier said than done.

5. We are going to make mistakes, and when we do we need you to be understanding. There is nothing worse than knowing you made a mistake and feeling even worse about it, because you are being reprimanded like a child. This is especially important to remember when you are working with teens! Being a teen is difficult in general. Being a teen with a genetic disorder is harder. Just be gentle and try not to give them one more thing to stress out about and dislike in their lives. They didn’t ask for this disorder and are probably doing the best that they can.

6. We might make decisions that you don’t agree with. You need to respect those decisions even if you completely disagree with them. These are our bodies (or our children’s bodies) that we are talking about. We are the ones who have to live with the decisions that are made regarding our medical care, so in the end we are the ones who need to make the final call.

7. If we express a concern about our treatment or an abnormal symptom that we are having we want it to be taken seriously. Chances are if we are taking the time to bring something to your attention it means we really do think it is a problem, and we don’t want that problem to be brushed aside.

8. You should encourage us to interact with other patients living with the same disorder. Obviously this is a little bit more difficult with HIPAA laws, but if you know a family or patient is struggling ask other patients to give consent for you to provide their information to that family (not sure if that is an okay thing to do under HIPAA?). Provide us with information about websites and local support groups, because the companionship and day-to-day advice that we can get from one another is so invaluable!!

9. Although sometimes it’s hard not to give your advice, when it comes to parenting decisions just remember that you aren’t the parent. You’re the medical professional. Your job is to provide medical advice, so please do so and avoid the parenting advice unless someone specifically asks you for your take on a parenting issue.

10. New parents of PKU babies are probably extremely stressed, afraid, and heartbroken. Be mindful of what you are telling them, because the last thing they need is to be terrified even more. Ask them whether or not they want to know only what they need to know right here and now or if they want to be told what to expect in the future. Some parents might not want to overwhelm themselves while others might be going crazy inside, because of the unknown.

11. Everything you say and do can have a huge impact on your patients lives! I cannot say this enough. You might not realize it, but you are so important in our lives and when you treat us like crap we remember it. When you go the extra mile and really provide us with the best care that you know how to we also remember that. Above all if you aren’t in this profession because you really want to help people, then find a new job!

Yours truly,

A girl who wants quality treatment for all PKU patients (and all disorders for that matter!)

Peppermint patty anyone?

So have you ever been on Pinterest before? If not you should definitely check it out. Not too long ago I discovered the joys of this amazing website, and since then I have been browsing around for new recipes that I want to try. At the moment I have a list of about fifteen new concoctions, but the one I am most excited about is a recipe for homemade peppermint patties! They are relatively easy to make, and the best part is by simply substituting the milk chocolate that the recipe calls for with chocolate flavored almond bark it is pretty low in phe. In my opinion (and the opinions all of my siblings–PKU and non PKU alike) it tastes just like a store bought York Peppermint Patty.

Here is the recipe. Give it a try if you have the chance.

***Peppermint patties***

2 1/2 cups confectioners’ sugar
1 1/2 tablespoons light corn syrup (I used dark corn syrup, and they still turned out fine)
2 tablespoons water
1 teaspoon peppermint extract
1 tablespoon vegetable shortening
8 ounces/4 squares chocolate almond bark (I used Ambrosia brand to calculate the phe)

Mix together the corn syrup, water, peppermint extract, and vegetable shortening in a medium sized bowl. Add the confectioners’ sugar slowly (1/4 cup at a time). When the confectioners’ sugar is completely blended, dust a work surface with remaining more confectioners’ sugar. Knead the dough until it is smooth. 

Using a rolling pin dusted in confectioners’ sugar, roll the dough out so that it is 1/4 to 1/8 inch. Use a small cookie cutter to cut the dough, and place the pieces on a wax paper/aluminum foil. Place the cut dough in the freeze for approximately 15 minutes so that they can get firm.

Shortly before the dough is done freezing, melt the chocolate almond bark in a microwave safe bowl in 15-20 second intervals. If the almond bark is too thick you can add 3-5 teaspoons of vegetable shortening. Do NOT use water. It will not work.

Dip them into melted almond bark. Use a fork to take them out of the almond bark, allow excess almond bark to drip off, and place back on the wax paper/aluminum foil. Put the peppermint patties back in the freeze for a few minutes to allow them to harder, and enjoy J 

Approximately 200 mg of phe/recipe–it made about 24 patties, so I am assuming it is about 8 mg phe/patty (about a third of what a store bought York Peppermint Patty has).

To lower the phe you can do 6 ounces chocolate almond bark and 2 ounces white almond bark (161 mg phe/recipe) or 4 ounces chocolate almond bark and 4 ounces white almond bark (122 mg phe/recipe). Your other option is to use only white almond bark. This will bring the recipe down to a whooping 44 mg of phe!!! You can also add sprinkles for decoration (orange/black for Halloween, red/blue for 4th of July,  red/green for Christmas etc).

My thoughts on Cambrooke’s COMPLETE bars

Wow! I’m not quite sure what else to say when it comes to the Camino Pro COMPLETE bars. I just got my samples today, and I have nothing but positives to say about this new product.

I took the peanut butter flavored bar with me to work today. I was extremely impressed with the flavor. I am on Kuvan, so I have tasted real peanut butter before, and the peanut butter COMPLETE bars taste pretty darn close to regular peanut butter. To someone who has never had peanut butter before you would never know the difference. The texture was a little bit chewy, but I didn’t mind this at all. To be honest I thought the texture was very similar to a Three Musketeer bar. The packaging is really nice as well. It’s very discrete, and I feel as if it would be less likely to raise questions at school or in the workplace compared to a glass of formula.

Out of the two flavors the fruit frenzy was my favorite. The best way I can describe it is by saying it tastes like raisin bread with a hint of apple flavor. I know that might sound like a weird way to explain the taste, but I promise it is yummy! My two younger sisters who also have PKU tried the fruit flavored COMPLETE bar as well, and they loved it to! We even gave four of our non PKU siblings a tiny nibble, and none of them believed me when I told them it was formula. One of them even jokingly asked if I would buy them for her!

One of my friends mentioned that the COMPLETE bars have a hefty amount of calories. They’re suppose to be meal replacement bars of some sort though right? If you eat one of these for breakfast or in place of an unhealthy snack (er…at least my snacks are usually unhealthy LOL), then it isn’t as if you’re really adding calories to your diet after all. You’re just replacing something you would normally eat with a COMPLETE bar instead.

All in all, Cambrooke has really outdone themselves with this product. Not only is it tasty, it’s smell-free, it’s convenient, and it doesn’t scream ‘medical food’ like some other formulas do…all of which win Camino Pro COMPLETE bars ‘brownie points’ in my book!

It IS okay to be normal!

I can’t help but wonder: why isn’t it okay for people who have PKU to be normal? Now, before you get your underwear in a bunch please let me explain, because I am not trying to offend anyone. I am fully aware that PKU people ARE normal.  I know that we are able to attend school, go to college, work a job, and start a family just like everyone else. However, sometimes it seems that more often than not when individuals living with PKU express ‘undesirable’ emotions or behavior everyone assumes it is due to their PKU.

You’re probably wondering what got me thinking about this right? Let me fill you in. A few days ago I was acting very silly with a group of friends. Anyone who knows me knows that this is not out of the ordinary. Someone who knew about my PKU, but was clearly not aware of my personality, commented that my phe levels must be high. To be honest I was extremely offended by this. I was not the only person acting like a goofball, and my silliness was not inappropriately timed. Not to mention I am almost 99% certain my levels were within the safe range of 2 to 6 mg/dl. So why is it that someone suddenly felt the need to explain my crazy behavior with a medical explanation, whereas other people can be silly without having their motives constantly put into question?

We encounter people who are grumpy, sad, tired, and overly excited everyday. A rough day or some bad news could easily cause negative emotions. Tiredness could be the result of a lack of sleep, and a large amount of excitement might be the result of an upcoming event. It is perfectly normal to feel these emotions. Even people who have PKU are entitled to bad days or a poor night of sleep. It is okay for people with PKU to have these normal behaviors! Having PKU does not make us immune to feeling emotions, even the ones that we wish we didn’t have, and not everything we do is caused by our PKU. Sometimes we are simply being normal, everyday people.

Time and time again I have heard parents of PKU children say ‘Little Susie is being so naughty. Her levels must be high!’ Now I am not saying that high phe levels do not have an effect on behavior. I am sure they do. BUT perhaps we need to consider that little Susie’s wildness is not always a side effect of PKU. Sometimes she is just being a child. Children don’t always listen, and regardless of what caused a child’s poor choices they still need to learn how to behave properly. They won’t learn how to survive in the world if they don’t. After all if I am late for work or disrespectful to my boss I cannot fix the situation by saying ‘sorry, my phe levels are high.’ Even if I am tired or irritable from high phe levels I have had to learn to adapt and compensate for my short comings so that I can do what I need to do. This is just my opinion, but I feel as if parents do their children a disservice by using PKU as a scapegoat, because honestly the world isn’t going to care if their phe levels are high.

Anyway, I apologize for turning this blog post into more of a rant. I got a little bit carried away. In the end it all comes down to the fact that I cannot stand when PKU is used as a scapegoat or explanation for someones behavior. We are human as well and can (and will!) have bad days and make less than brilliant decisions once in awhile. It’s a part of life, and it’s perfectly normal. It is okay to be normal!

Dear formula companies: stop teasing me!

First of all, by no means am I trying to knock the companies that develop low protein foods and formulas. The advancements in treatment options for PKU that have been made just in the past few years have been wonderful, and I am SOOOOO grateful for the companies that are dedicated to helping our small community! So many newer formulas such as the amino acid blend mix-ins made by Applied Nutrition, Camino Pro Restore, and now Camino Pro Complete bars have come out in such a short time. These newer developments are really giving PKU patients the freedom to personalize their treatment to meet their needs. Best of all most of these newer formulas (in my opinion) are delicious!!!

However, it’s a little bit disheartening when you hear about these new products and even get to try them only to learn that you will not be able to utilize them for one reason or another. For example, I think the Camino Pro Restore is absolutely amazing! The taste is great. The fact that it is pre-made is incredibly convenient, and the packaging does not scream “medical supplement” like some other formulas do. In fact if I was given the choice I would use Restore on a daily basis in a heartbeat. The problem is, there is no way I could afford this formula. I am fortunate that I live in a state where some formulas are covered, but Restore is not one of them. I couldn’t even imagine the battle I would go through if I tried to get my insurance to cover it, and even if I did get coverage the copay would be through the roof.

The Complete bars are pretty much the same story. My sister and I had the opportunity to taste test them last fall, and we both loved them. These would be great for my sister to take to school and for me to snack on while I am running from school to work to dance practice to babysitting and so on. Again though, I am sure the price will be costly.

Don’t get me wrong I know that by living in a state the provides some formulas I am already much better off than some PKU patients and their family. I also know that many people struggle with drinking formulas that they hate, so I am glad that I like the formula I am currently on (Phenylade Essentials–chocolate). I just wish I wasn’t teased with nutritional supplements that I like even more. Here’s hoping I become rich someday and can stock up one whichever formulas I please LOL! In any case kudos to the formula/low pro companies for continuing to make amazing products!!!

P.S. Sorry for not posting in such a long while. What can I say, life happened!