Dear Friends...

Friends, 

Last post I told you about my highly exciting news.  (About studying abroad in Chester, England.)  

Well, I've been saving up for this trip for a year.  And I managed to save $3,400, while attending school this semester.  I also, have a grant for $2,000.  

But, I'm short $2,000. (Which would be used for my plane ticket.)  

So in efforts to raise that money by January 7th, I've started an online fundraiser.  If you can donate, I would greatly appreciate it.  It doesn't have to be a lot of money.  I'm thankful for every dollar.    

Here's the link:

http://www.gofundme.com/hyeiks   

If 200 people just donated $10, then I would be there.  If 100 people just donated $20, then I would be there.  

It doesn't take a lot to make a difference.  

As many of you know, I'm in school to be a teacher.  Part of the reason I want to do this study abroad trip so bad, is so that I can see how another country's school system works.  Every country (every teacher for that matter) has its own philosophies, and I want to build my own philosophy based on what I've seen works in many different places.  

I once had a 6th grade teacher who visited Egypt right before teaching us all about it.  That year, I loved social science.  Because she brought it all to life.  I want to bring the world alive to the students I teach someday.  To have been places and collected trinkets to show and stories to tell.

This "travelling the world" thing isn't a new desire.  I've always wanted to travel.  When I was very little I thought I would visit all sorts of places like China, or Africa.  Then, as I grew a little older and learned a little more about my diet, I decided I couldn't travel anywhere outside of the U.S.  I thought that was the only place where my diet would work.  But, as a grew older and learned even more I found out that I could travel.  

I want to show PKU kids, that you can travel the world.  That study abroad is an option!  I want to see what living in the UK with PKU is like.  If I have the time/resources I want to visit their clinic and talk with the doctors about their views on PKU.  

Travelling abroad is about becoming something bigger for me.  To gain perception and learn different views.  To discover who I am and what I believe in.  As well as be a role model for those who look up to me.  

I've never wanted to make money off of my blog.  I've kept ads off the sides for a reason.  And I'm sorry to ask this now.  But, I really need help to get there, and to accomplish my dreams.  

If you can't donate.  That's fine.  I won't be angry or hurt or anything.  Keep reading.  I'm going to England, and you won't want to miss the adventures that come with it. :)

If you can, please do. :)  And thank you in advance!!!

-Your Friendly Blogger,

Cassandra  

Good News!!!

After a year of planning and working, I am very pleased to announce some very exciting news...

I am OFFICIALLY going to study abroad in Chester, England next semester!!!!

So... what does that mean exactly?

It means that next semester I will be attending the University of Chester as a student.  In England.  For 6'ish months.

I am sooooooooo excited!!!  

(And yes, that many o's were necessary to convey my inner feelings.)

What it means for this blog... is that you're going to get a new perspective on PKU.  Or maybe even more than one.  

1. PKU'er in England
2. PKU'er doing study abroad (and how it's possible and you shouldn't think that can't leave the country just because you have PKU)

 This is going to be fun.  And I have a lot of ideas for posts with this blog.  (As well as things I want to do and see).  So you should be excited as well.  :)

Thanks for always reading my blog.  I'm thankful for each and everyone of you.


We are going to have so much fun!  :)   

Magic Pill

"If there was a magic pill that cure ______ would you take it?"

This is a question that has been asked countless times, to all sorts of people who don't fit in with society's norm.  

Some people say, "Yes.  I would please, invent this magic pill that'll make me all better."

Other say, "No, I'm not broken I don't need a pill to fix me."

The other day I was in my Intro to Deaf Ed Class and we were discussing this question.  And naturally my mind wandered in PKU territory. 

Would I take a "magic pill" if it could cure my PKU?

I'm not sure. 

And I know that may sound silly to some.  They're probably at their computers right now rolling their eyes.  "Oh please, we know that if there really was a pill you'd take it". 

You may be right.  But considering that there are a few treatments out there (KUVAN and PEGPAL) that I haven't had even the slightest desire to join?  Maybe not.

PKU is a part of me.  It's a part of my life.  I have made PKU a part of my identity, and without it... It would be hard to change that.  It's a lifestyle.  PKU keeps me healthy.    

Sure there are things I'd love to go without (cough- blood tests- cough, cough).  But in reality, I'm sure they'd make me keep doing blood tests so that they could measure the affects on the pill.  So...

Would I take the pill?  If it made me magically better?  I don't know.  If the time ever comes that a simple pill could fix my DNA... I'd consider it.  I mean, Pizza smells really good.  But, on the other hand... I kind of like having PKU.  It makes me unique.

Would you take the pill if it could "cure" you?

(P.S. I understand that there are illnesses and syndromes that just make life hard.  And that don't have upsides.  And if you would take the pill.  I wouldn't judge.  It's a philosophical debate that's been around for ages.  Kind of like which comes first the chicken or the egg?)   

Lunch Time!!

Lately, I have been really excited for lunch time.

Why?

Well because for the semester I've been using one of these:

   A bento box!!!  

Now, my bento lunchbox looks a lot like this one (which I got off of google really fast... thanks to chefmom.com for the pic).  But the sections are little boxes that I can take out and put in.  And a couple of them have lids so I can put juicy items in it, without having to worry about it getting everywhere.

The best thing about about it is that it's fun to pack as well as to eat.  And I actually get a nice lunch.  :)

Confession: As a college student I find it really hard to eat lunch.  Especially since I'm on campus all day everyday.  But, this has actually helped.

I usually try to include a variety of items in my lunches.  In the past I've packed: raisins, apple slices, bell peppers, carrots, cucumber, leftovers from dinner, fruit snacks, pudding, peach slices, PKU tortilla sandwiches...

And I haven't even explored that much with it.

When I was in elementary school I did the whole pretty lunchbox thing, and in high school it became the sack lunch thing.

But, it was never as much fun putting together than it is with my bento box.  (I'm not sure why.)  And it tends to be healthier too.  (Again not sure why, these are just my observations.)

Now, if you look online you'll see thousands of pictures of moms making sure picture perfect lunches for their children... I don't do that.  Not at all.  I figure it's just going to be eaten, so why try and make a pig out of grapes or something as incredibly hard as that.

I cut up my fruit into chunks so I can pack in more.  I fill the lunchbox, and my biggest thing is variety.  One week I'll have cucumbers from the grocery store so I'll pack that as my veggie.  But then the next week I'll buy broccoli instead, so I can get that variety.

Also, I have 5 sections in my box.  I always fill at least 1 with a veggie and another with a fruit.  Then I go from there and use what's on hand, but haven't used lately.

It just makes lunchtime a lot of fun for me!

Anyways, enjoy!

The Halloween Stash

Happy Halloween!!!

I'm sure a lot of you are wondering:  What do I do about Halloween?

Well, back in the days when I still Trick-or-Treated my mom had established a simple system.

She would buy the kind of candy that was low-protein.  Basically hard candy.  That would be the candy she would hand out.  (Although based on the number of kids in our area, I'm sure she had a bag of it stashed away as well.)

My sister and I would go trick-or-treating.  We'd always pick the candy we could have, and liked.  But if that particular house didn't have that candy, I'd choose something I knew my mom or dad liked.  (Later that extended to my little brother or friends as well.)

Then, very ceremoniously, my sister and I would dump our goodies on the floor and go through it with our parents.  That was for 2 reasons: to make sure the candy was safe (as in not poisoned), and to sort out the candy we couldn't have.

Note:  I have classic PKU, and so does my sister.  However, we were allowed chocolate growing up.  In fact, I didn't even consider the fact that some PKU'ers considered chocolate as a "no-food" until just recently.  It is high, in phe.  We'd just control ourselves on the amount.

So, the candy was sorted.  Then my mom would trade us candy.  For each piece of candy we couldn't have, she'd trade us one of the lower phe candies she had bought.  That way, we'd have just as much candy as before... without it being stuff we couldn't have.

But, we didn't leave it at that.  Because, nobody wants their kids vibrating from sugar overdose for the next two weeks.  And because we were allowed chocolate.  My mom kept the Halloween bags.  She had a 3 pieces a day rule.  And only one of them could be chocolate.  :)

If was fine.  In fact, it was great!  I had no qualms about any of it.  Eventually it became a game with my sister and me to see if we could make our Halloween candy last until Easter.  haha.

That's just what we did.

Now, I've been seeing a lot of people freaking out about being "gluten-free", "nut-free", "dairy-free"... all sorts of stuff.  To the point that they are giving out carrots or key rings.  And, their kids, aren't even the ones that need to be any of those things.

I appreciate the consideration.  I do.  The gesture is kind.

But, I don't want anyone stressing over a problem that isn't theirs.  (It's not even that bad of a problem.)  We can figure it out.  And we will.  We're intelligent beings.

I know there are other allergies out there, a lot worse than PKU.

But, I still stand by what I said.  If it's not your problem why worry?  If you're worrying so hard that you end up giving key chains away, then you're worrying too hard.

We can handle it.  Stop worrying.  Enjoy Halloween.  It's a Holiday after all.  :)

 

Recipes Galore!!!

 Last week, I talked about PKU Adults; and I showed you a great resource for PKU Adults.

This week, I'm going to be talking about a different website/resource that I have found.  (The past couple months these resources have been popping up everywhere.)

I'm sure (at the PKU families are aware) of a company called Nutria.  They sell PKU friendly foods (and formula).  Anyways, they have a website called: medicalfood.com

They sell PKU friendly foods there (of course) because that is what their company is about.

 But, they also have a "Learning Center"so you can learn more about PKU.  I'm all about educating yourself if you know someone with PKU.  The more education the better!!!

They also have (this is my favorite part) Recipes and Meal Ideas.  Maybe the title is misleading, because they don't have a huge amount of recipes... but they have a good amount.

I'm a part of their "Recipe of the Month Club".  They basically email you a recipe every month.  It's free, and the recipes look delicious.  I'll admit I have yet to try any, but someday... right?

So far I've been email a recipe for Cheese Biscuits, Jack-O-Lantern Cupcakes, and a couple others.  But there are recipes just waiting to be tried on the website itself as well.

It's really cool.

Oh boy, I just realized that if I keep showing you guys the resources I use, you'll just go straight to the source and less to my blog...

Maybe I should keep my secrets. ;)

Or maybe not.  Anyways, enjoy!  And come back!

PKU Adults: A Mythical Being

 I was scrolling through Facebook the other day when I came across this:

http://adultswithpku.org/Home.aspx

It's a website, put out by the NPKUA (National PKU Alliance) for Adults with PKU!!!!

I'm sure all of you are just sitting back thinking, "Yay.  So what?"  I don't think you understand, how monumental this is for me as a PKU'er.  

It feels like for the first time, they are recognizing that there are adults who have PKU.  Until, I attended PKU Camp, I had never met an Adult PKU'er.  In fact, I had barely interacted with PKU'ers my own age.  If it wasn't for Camp PHEver, I wouldn't have met a PKU Adult until I was one myself.  
 Before then, Adults PKU'ers were a thing of myth to me.  I knew I was going to have PKU my entire life, but only because the doctors told me that was the case.  I didn't have an example to look up to.  

But, I talked a lot about that earlier (see May 2014 entitled: What every child needs).

As an Adult PKU'er myself, I still haven't met a lot of PKU Adults.   Most of the activities held in my are are for young children.  For a while, it felt like once you turned 18 you were cut off from any social interactions with other PKU'ers.

Most of the things I know about PKU I've either googled, asked my dietician, or experienced myself.

But this website changes things!

Nationally, they are recognizing that PKU Adults exist.  It's a source of information for whatever questions you may have.  There's a forum.  (Just, don't be one of those lunatics who get into some dumb argument over something that's your own opinion.)  It talks about insurance.  It has the latest PKU news on it.

There's a MENTOR PROGRAM FOR Maternal PKU!!!!  So that PKU ladies who want to be pregnant or are currently pregnant can get advice from ladies with PKU who already have been through it.     

This is exciting, because for the longest time I didn't know if I was going to be able to have kids.  I didn't know anyone who had been PKU and had kids.  But, now you can have someone who's been there and done that to help and support!

This website, at least to me, means that PKU Adults are finally being recognized.  PKU is a life-long life-style.  Back in the 80's (or so, it's not a solid fact) PKU'ers went off diet when they were a certain age.  There were no PKU Adults.  Now there are.  Because, now we know that PKU is for life.  And now, we are recognizing that they are there. 

PKU Adults are not mythical beings.  They are real!  And I am one of them.

Signs

Every PKU'er knows how important it is to stay on diet.  If you don't you could end up really hurting your brain (aka mental retardation).

Nobody wants that.

When I was little I used to think that if I went over one day, the next I would be mentally retarded.  But it's not like that.

It's a gradual process.  And that's what makes it hard.  The fact that you don't see anything "horrible" happen immediately after having a high day.  And for a moment you think, "this is all a huge conspiracy.  PKU doesn't even exist."

But here's the thing... If you pay attention there are small signs telling you when you've had too much Phe that day.  And warning you what can happen.

There is variation.  Everyone is different.  I'm just going off my own symptoms.

For me, I know I've had too much Phe when I get a headache.  It's hard to focus on anything.  I'm overly moody.  My forehead feels like it's overheating.  And eventually (if I ignore it, which I seldom do) I vomit.

Yeah... not that pleasant.

And yet, important.  Because if we didn't have these signs, we'd just keep consuming phe.  And then one day, we'd go over the tipping point.  I don't need to tell you what happens then.

But, knowing when you've had enough phe is important.  That way you can stay far away from the danger zone, and live the healthy life you can live while on diet.

PANCAKES!!!

I made delicious PKU Pancakes on Sunday.  (Thanks mom!) 

I haven't had pancakes in forever!!!  And I really excited when my gorgeous mother found me an easy recipe.  In fact, I made them straightaway. 

Here's how they turned out:

  Delicious!  (Actually they were a little crumbly, but that's my fault and how stingy I was with the rice milk.  And even with crumbliness, they were pretty awesome.)

Recipe:

Ingredients:

• 1 1/4 cup Rice flour
• 1/2 cup Wheat or Tapioca Starch (I used wheat... it was what I had on hand)
• 2 tsp Baking Powder
• 1/2 tsp salt
• 2 Tbsp Sugar (I used sugar for my first go but I'm sure honey or any other replacement would work as well...)                                                                                                                        
• 1/4 cup Applesauce (or you could use sweet potato, banana, or even pumpkin!)
• 2 Tbsp Oil (kind doesn't matter)
• 1/2-1 3/4 cup liquid (yeah that's right liquid... it could be coconut milk, rice milk, water, anything...  But start at 1/2 cup and go from there to the consistency you want.  I used rice milk)

 Directions:

1. Mix ingredients above the line together (dry ingredients)
2. Mix ingredients below the line together (wet items)
3. Mix both bowls together
4. Pour onto greased frying pan.  And you probably know the rest... (here's a hint: Flip the pancake when the bottom is cooked)

You know what's cool about pancakes?  The versatility.  Add dried cherries and chocolate chips?  Yum.  Use pumpkin instead of applesauce and add cinnamon?  Autumn Themed pancakes.

You can eat them with just about anything and be happy.

Pancakes are delicious.  And fun.  Enjoy!!!

 So your welcome for providing you with a great recipe.  (And thanks to both my mother and dailydietribe.com for the recipe.)

Is PKU a culture?

As many of you know, I'm on my 3rd year of college.  I know!  Where has the time gone!  But, this year one of the classes I'm taking is called "American Sign Language 2".  In this class we have an amazing textbook by: Thomas K. Holcomb entitled "Introduction to American Deaf Culture".  

I was reading in it yesterday and I came upon a fascinating concept.  "Culture versus Community".  The textbook talked about the Deaf communities.  But, me being me, I'm going to take the idea another route.  

What is a community?  According to Holcomb it's, "typically perceived as a group of people who happen to reside in a similar geographical location."  Google defined it as, "a group of people living in the same place or having a particular characteristic in common."  

Would that mean that high school cliques are communities?  In my experience as a swimmer, we definitely have a community.  We all go to the same high school, and have a love of swimming in common.  But, I think the fact that we spend time together really makes it a community.  

If you had a group of people who all loved sports, but didn't spend anytime together... you'd just have a handful of sport-lovers.    

So, my own definition of community would have to be: "a group of people living in the same region, who have a characteristic in common, and who spend time together because of that characteristic."

But what is a culture?  Paraphrasing Holcomb he says, "it is more than just shared language, food, and clothes.  It is the shared values and beliefs of a community."  When I looked at google it didn't have a satisfying answer.  In fact, it tried to define it  as "bacteria and germs" even after I added community to the search engine.

So.,. culture is the shared values and ideals of a community.  (At least on the deeper level.)

Maybe I should change my definition of community.  

Community is a group of people who happen to reside in the same area, who share a characteristic, values, and ideals.  And who are drawn together because of that culture.

I hear the words culture and community thrown around a lot.  All the time I see posters shout "Join our club and be a part of the community!"  

And I wonder, is PKU a culture?  I'm not so sure.  We have a characteristic in common: Phenylketonuria.  But do we have the same beliefs?  Do we have the same ideas?  

Maybe I just don't see it, because where I live we don't have a strong community.  Maybe I don't see it because I've never been to the National PKU Conference.  (Although I was really close to going this summer...)  Maybe I'm just out of the loop.  Or maybe it depends on where you live, and how close-knit the community is...

But if we did... what do think our common beliefs would be?  Is PKU a culture?  (Not rhetorical questions by the way!)

Honestly, what are some common beliefs that you think PKU'ers have?  I'd love to hear some of your ideas.  :) 

The Familiarity Effect

Back in 11th grade I took AP Psychology.  I learned lots of neat things about the brain, and I still remember quite a few of those things to this day.  But, one of the biggest things that stuck with me is psychological phenomenon called: Judging.

(Now bear with me, because in a few moments this article is going to take an unexpected turn.)

People automatically judge things within 30 seconds of seeing it.  It's been scientifically proven.  And honestly, that's okay.  Because, judging is how your brain copes with new information.  If we didn't judge things, we couldn't totally process them.

 This happens when we see new people too.  30 seconds after seeing them you've categorized them and stored it all away in their compartment.

But, science also says that the more you see someone and the more you interact with them, the more you are familiar with them.  And the more familiar you are with them, the more you actually like them.

For example, you walk into a small class and find a seat.  You happen to be sitting next to a tall boy with an extremely big nose.  Already you've judged him.  But as the class progresses, and the more you work with this boy the more you like him.  You don't see that big nose that used to bother you slightly.  Instead you see his personality.  You see the class clown that everyone likes.  You see your friend.

Now, I've stayed within the realms of proven science so far.  But, I'm going to take this principal and see if I can apply it in another direction.

You see people everyday.  In fact, you see certain people everyday for hours on end.  You are looking at them.  You have time to get familiar with their face, their size, their hair...

In fact, you grow to like who they are and what they look like.  No matter what they look like.  Because you like what your familiar with.

But, what about yourself?  You don't get that chance to get familiar with yourself.  Even if your a mirror hog, you only get at most 2 hours of exposure to your own face.  And you get even less exposure to the rest of you.

Maybe (and remember this is all theoretical- dreamed up by me.) just maybe, you don't like certain characteristics of yourself because you haven't had the time to get familiar with it.

What would happen if you spent just a few minutes each morning just looking at yourself?  Not in a critical "I am so ugly I should go see a plastic surgeon" kind of way.  But in a "this is who I am" kind of way.

They say talking in a mirror helps boost elf-esteem.  And this is kind of the same concept.  Just take a look at yourself in the mirror.  Make expressions, so that you can see what you look like when you're using those expressions.  Go ahead and talk, maybe even laugh.  That way you can see yourself and in a way interact with yourself.

As you get familiar with yourself, I hypothesize, you'll find that you like yourself more.  That you can see through the physical attributes, and that you'll begin to see the person underneath more.

Again, this is just a theory I've worked on.  And it's worked for me.  Let me know if it works for anyone else!

Thanks for reading my blog!  Come back anytime!    

Pink Sauce

Unlike some other food bloggers, I am not a great cook.  My mom and sister are both amazing cooks.  I can follow a recipe.  

But lately I've been in this experimenting mood.  It's been kind of weird.  And most of my experiments end up... let's just say it's classified.  

Friday, however, I had a couple of tomatoes that wanted to use.  But, I wasn't sure exactly how.  So, out of the blue I decided to make spaghetti sauce out of it.  And to my surprise it actually went (mostly) right!

What I did was I blended up the tomatoes with some rice milk and water in a blender.  Now I didn't blend it up too well because I wanted tomato chunks in the sauce.  I put the mixture into a pot and put it on simmer.  

Then I added spices: garlic, salt, and basil.  I just added it until it tasted right.  (Sorry I was just experimenting so I didn't get any measurements.)  

It tasted great, but I was faced with a problem.  The sauce was more like a soup, I needed some way to thicken  it.  Being the 21st century girl I am, I googled "how to thicken sauces"  and found a very helpful website: 

http://www.wikihow.com/Thicken-Sauce

It had seven different ways to thicken a sauce, but in the end I used a mixture of two different ways.  

At first, I started with the "Reducing Method" where you basically simmer the water away until it's thicker and the flavor is more concentrated.  (When you do this, make sure you stir occasionally so that the bottom doesn't burn.) 

It worked, but it was really slow.  And I was hungry, so I decided to hurry it up by using a different solution to help it along.

The second solution was called "The Flour Method".  I added tapioca flour, but I'm sure regular flour, or rice flour would work too.  What you do, is you add flour (it gives you an estimate of how much on the website, but I eyeballed it).  Now, I didn't do exactly as the instructions called for.  I just added the flour and turned up the heat.  

It did have a flour-like taste, so I added more spices.  And it seemed to work out just fine.  If I use this method again, I'd turn the heat up higher so the flour would dissolve better and give less of the flour taste.  

It was a great sauce, considering it was my first time ever doing something like that.  Funny thing though, it was bright pink.  From the flour and rice milk I guess.  I wonder if all tomato sauces are really pink and they add food coloring to make it the traditional red?  

Another method I didn't try (simply because I didn't have it on hand) but would in the future was the "Pureed Veggie Method".  Apparently it thickens without adding a taste.

Anyways, that was one of my successful adventures in the kitchen.  What's cool about being able to make sauces, it that once you become an expert you won't need to buy sauces from the store anymore.  And you can control the ingredients making it more PKU friendly, like I did with the rice milk and tapioca flour.  

Thanks for reading!  Sorry, I didn't think to take pictures as I was experimenting.  Maybe next time!     

      

A "Pintresting" Post (pun intended)

I haven't written a blogpost in forever.  I'm really sorry to everyone.  Excuses are just that (excuses), so I won't offer any but I have a goal of posting once a week for the rest of the school semester.

Okay, so today's topic:

Pintrest has been regarded as many things.  A place to waste time.  A place where you can find some really neat projects that you wish you could do.  A place to put all your project ideas before you start them.  

Well, I want to talk about 1 way that Pintrest can actually be a help to PKU'ers.  

Hint:  Have you ever wished you could make something else instead of your basic 10 recipes that you make all the time?

Well, using Pintrest you can actually find a lot of PKU proof recipes.  

I have 118 pins in my "PKU Friendly Food" board.  It's currently my largest board.  And the great thing about it is, a lot of PKU'er Pinners have a PKU -proof board.  So pretty easily you can go and look at all these great recipes.    

I've Pinned recipes that aren't strictly PKU because I can see an easy way to change it so it does become PKU-proof.  

Now, the question really is whether you're going to try those recipes.  Or if they'll be sitting there forever.  It takes a little bit of dedication to actually cook something up from Pintrest.  But, if you're tired of the same old PKU-proof dishes it's a great way to add variety.  

Make a goal.  "I'm going to try 1 new dish a week."  That's not too hard is it?  Then buy the ingredients.  (I go to the grocery store every other week, so to save on cost I would choose 2 similar dishes.  That way I don't have to buy as many ingredients.)  Cook the meal.  If you like it, write it down or print it out.  If you don't, delete it.  You don't need to keep nasty recipes around.  

If you're finding it hard to get yourself to cook a new meal 1x a week for whatever reason.  Choose a day of the week and make that night "new recipe night".  If it becomes a habit to make a new dish, it won't be as hard to get around to it.  

In conclusion (since I always feel as if I'm just throwing things around and rambling): Do you ever feel like you eat the same things over and over again?  Especially as a PKU'er when you're options are limited anyways?  Well, Pintrest actually has a lot of recipes that are PKU-proof or can be adjusted really easily.  You can find them on other people's PKU boards or you can search PKU in the search bar.  If you're having a hard time actually making the foods, make a goal.  Make 1 new dish a week.  If you need to make that new dish on the same night every week, that way it becomes habit.  And you won't have a problem anymore.  :)  

Geez, that conclusion was tons better than the rest of the post.  The only reason I'm not rewriting this post all over again, is because I promised myself I'd post today, and I don't really have the time.  So, I'm sorry again for rambling and for not posting forever (even though I warned you it would happen).       

 Thanks for reading my blog.  :) I'll see you again soon.

  

  

A Little Story

This time I'm going to tell you a little story.


One day, when Cassandra was just an 11 year old girl she and her mother went to a meeting for girl's who were about to turn 12 in her church.


It was as fun as a meeting could be, but the best part were the refreshments.  (Of course it was the best part!  Refreshments always are!)  Cassandra was delighted when she saw that it was pink lemonade and cookies.  She grabbed a cookie and grabbed a lemonade.  And because she was a growing 11 year old girl, she ate them very quickly. 


As she was drinking the lemonade, she thought, "this tastes kind of tangy."  Her mom noticed the taste too and became concerned.  "Is this sugar free?"  She asked a couple of the leaders.  No one knew why she would ask such a question but they went and checked. 


It did. 


Very concerned now they went home and Cassandra was placed on a 3-day (for that is the time it would take to level out her Phe levels) no-Phe diet; which consisted mostly of applesauce and lemon pudding. 


And Cassandra was okay.  (Thanks to her mom.)


Now, you're probably asking "Why were they serving little 11-year old girls sugar-free lemonade???"


Here's the reason.  One of the other 11-year old girls had diabetes.  And in the effort to accommodate for her diet, they forgot about Cassandra's.


Sometimes, diets clash.  People forget.  Or they don't connect certain foods to Phe.  Or maybe they just never understood the diet in the first place.


So you need to responsible for yourself and read labels whenever possible.  I learned it the hard way. :P  The only people who will really understand your diet are: you're parents, your dietician, and you.  (And of course other PKU'ers.)


I don't mean to come off preachy.  But it's true, and it needs to be said.  Your diet relies on you to take care of it. 


But, don't worry.  Because you're not totally alone.  There are people willing to help, just remember that they don't know everything about the diet, and most likely there are times when they'll forget all about it. 


So be responsible!  Drink your milk!  And count your Phe!  And smile, because life is good! 

A PKU Connection

I feel like I say this a lot.  But... sorry about the month-long absence.  I'm currently working 2 jobs and taking a summer class, and it's really hard to find the time to get on.

Anyways, recently my sister (who also has PKU) and I were at a family party.  The food being served was Mexican, which typically is a huge "NO" for PKU'ers.  (It's all meat, beans, and cheese.)  But, there was enough things that we could eat that my sister and I filled our plates.

She turned to me and said something, that I thought was quite important.  She said:

"It's easier with a friend."

 I heartily agreed.  And I do now.  It's nice when people try and learn your diet.  In fact, it makes you feel quite special.  But, nothing can replace a fellow PKU'er.

It's important to be in contact with someone who truly sympathizes.  Someone who knows all the ups and downs from experience.  Someone who can give you ideas and solutions, that they've tried themselves.

I'm lucky.  My sister and I are a couple years apart, so I've had her to talk to almost my whole life.  But, if you don't have a sibling with PKU there are other ways you can connect with other PKU'ers.

Facebook is a big one.  There are several facebook groups with PKU'ers from all over the world.  There are PKU groups supported by the clinic you attend.  (Ask your dietician for information.)  You could go old style and get a penpal. 

At the very least, you've found my blog.  And you can connect to me.  :) 

But, why is it easier when you connect with other PKU groups?  (Besides the sympathy...)

People naturally look for others like them.  That they have something in common with.  So that they can connect.  Like in a high school lunch room; we naturally congregate into cliches.

People need people like them.  And PKU is a trait of ours that we try and find a group to connect with over.
If you can't connect, then that trait becomes less desirable.  Less important.

From what I've seen (and I am far from any professional) people with PKU that doesn't have a support group behind them or at least a person to talk to... they tend to fall away from the diet.  I'm not quite sure why.  But, if I have to guess... I would say that they hide the "odd trait" in order to fit in better. 

Why do you think support groups actually work?  Or exercising groups?  You've connected to people over a trait, and don't want to let them down.

I feel like I'm rambling.  But when I condense it all to one sentence, it boils down to this:

It's easier with a friend.  

Just like my sister said.  :)  I'll try to get on and post again within the month.  But if I don't... I'm terribly sorry.  Like I said.  I'm insanely busy.  Thanks!!!

 

      
      

What Every Child Needs

As I've probably mentioned before, I am in college studying Deaf Education.  (For those who aren't exactly sure what that is... It's just Elementary Education but in American Sign Language.)  And Deaf Education, actually is hot debate in the Deaf world right now.  Whether it's better to mainstream students or to send them to a Deaf School.


Yes, I know this is a PKU Blog, but humor me for a moment. 


One of the arguments for Deaf Schools is the fact that kids need a role model.  They need an example of someone like them, who has grow up successfully and done well.  That way they know, that they can be successful and happy too. 


As I've thought about this, I've realized... this goes for everyone.  Every single child needs a role model.  Some one to look up to.  But for now (because you're right this is a PKU Blog) I'll apply this idea to PKU'ers.


Imagine.  You're a child with PKU.  You know there are people out there with PKU like you.  (The doctor told you so.)  But, you've never met another PKU'er.  You have no idea that in some places there is a strong community.  And you have no idea what PKU'ers are capable of, simply because you've never met another PKU'er.  Let alone an adult.


But, imagine.  You have met PKU adults.  You know PKU won't hold you back, because it hasn't held them back.  They follow their diets diligently, making you want to follow yours.  If only to be just like them.  If your a girl, you know PKU Pregnancy is nothing to fear.  That it's possible.  Because you've seen your role models go through it. 


Which picture is better? 


I think that the second one is better.  The first one is more prone to loneliness and the feeling that PKU is holding you back.  That it's hard, and it's a curse.  I'm not saying that it's a definite thing.  But, if in my head it seems more likely.


The PKU community where I live is young.  The activities focus on the young kids, helping them make friends.  Which is great.  They honestly need friends.  And occasionally they'll have a young adult activity.  But, it's not their focus.  I'm lucky.  I have my sister who also has PKU.  But, until I was 14 I had never truly seen PKU adults. 


I'm sure they were there.  I just didn't focus on them.  But, until PKU camp.  I had no idea what a PKU lifestyle would look like when I was an adult.  What it would be like.  It was a mystery.  There were times, when I didn't think having a family was even possible.  I didn't know a lot about PKU Pregnancy.  I had never met anyone who had experienced it.  The idea was really scary to me.


I think, and this is just my opinion, but I think that all PKU communities would be wise to have the kids and the young adults really get to know each other.  I'm not sure how.  But, I am sure that every child needs that example to look towards.  I think with this bond, kids would be able to stay on their diet easier.  Because they have a clue what it will be like when they grow up. 


And they won't be afraid.

Tradition!

Recently on a PKU facebook page that I facebook-like called "International PKU Recipe Database", there was a question asked I answered it.  BUt I would like to share some further feelings about this subject.  

Here's the Question:

I'm a mom to a 9 month girl with pku what do I do for Easter meals and baskets?

The question is a very good one, sometimes I think that we forget that before we had to deal with our diets that our parents had to.  The whole idea of a strict diet for life is pretty intimidating.  Before us, they had no knowledge of PKU.  And yet, they still learned and dealt with it for most of our childhoods.  ...But that's really a topic for another day.

Now, to answer the question.  Most hard candies (excluding sugar-free) are free in Phe.  And usually there are low-Pro Chocolate Bunnies for sale at one of the PKU food websites.  And peeps are good too!  It's not hard to fill an Easter basket full of goodies.  

When it comes to Easter meals (or really any holiday) if you want to have a traditional meal, just take a special PKU-proof recipe and serve once a year on that holiday.  It becomes a tradition.  And your child will know to expect it on that holiday.  It doesn't matter if the recipe seems "unconventional" for the holiday, if it's a tradition... it's a tradition.   

And traditions are some of the best parts of any holiday.  

Have a great day!  

Belated Birthday!!!!

Oh My Goodness!  I can't believe I forgot!

On February 28th, 2011 I wrote my first post.  That means that on February 28, 2014 was my blog's 3rd birthday!  I feel like a bad mother for forgetting it.  (In my defense however, it was during my writing hiatus when I was busy from dawn until dusk with my Practicum.)

But it feels unreal that my blog could really be 3 years old.  How long to most blog's last?  I'm not sure.  I think a significant number of them are missionary blogs, and teenager drama-filled online journals.  (Tow totally different things by the way!)

Here's a cupcake to celebrate!!!

If my blog were really a child it would be in the adorable but mischievous stages of toddler hood.  I'm sure of it.  

Anyways, enough about that.  Let's look at some stats:

9,076 views in all time history!  Around October 2011 there was this incredible jump that has remained consistent through the years.  I mean it's really impressive. 

There's what my chart looks like for those that are interested.  It's this little chart that keeps me going, telling me that people actually look at my blog and care.  (I honestly have no idea why that spike in Oct 2013 occurred...)  

And here are the top 5 posts of 2014.

Top 5 Posts (As reported in 2014)

1. Happy PKU Awareness Month (March 2011)- 601 page views
2. A PKU Story- 234 page views
3. The Tigger Theory- 226 page views (though I think that people looking up Tigger might accidentally stumble across this one) 
4. PRISM301- 147 page views
5. New Favorite Recipe- 143 page views

Anyways, happy 3rd Birthday Blog.  I can't believe I've made it this long.  And hopefully I'll still be blogging to celebrate a 4th.  :)

P.S.  Sorry about being absent for the past 2 weeks.  My computer contracted a pretty serious virus, and I've been making treks to the library to get homework done.  In fact, that's where I am now typing this.  It's just been a real hassle.  But hey, that's life!  And have a great day!  

            

Thank You.

The other day I was talking to a bunch of my friends, and I'm not sure how it came up, but we were talking about my diet.  They were going off about how limited it was, and how sorry they were, and how someday in heaven they were going to force me to eat all sorts of foods.

It was fine.  I've had lots of conversations that mimic this one almost word for word.  I just play along, no harm done.

In fact, I didn't think anything about it.  Until...

One of my friends came up to me a few days later and said, "So I was researching your diet the other day..."

This particular friend hadn't really dealt with my diet that much.  So when he said that, I was kind of shocked.  I mean, who in their right mind would go and research a complicated metabolic disorder?  (Oh right... that's you guys.  Haha.)

No one (that's not related to me) has ever gone out of their way to research my diet.

I was touched.  Really.

A conversation ensued that was quite intelligent.  He had researched more of the technical, genetic, chemistry stuff.  So we talked about that.

It's been on my mind ever since.

He's not an expert at my diet (but then again neither am I), but he actually tried.  He was interested in it, and went out to look for stuff.

I didn't even know he was doing it.

I like talking about my diet, and informing the world that PKU exists.  I really do.  But it's something special when someone actually goes out of their way to learn something that complicated.  (Now it helps that he actually likes chemistry so it was fun for him...)

But... it meant a lot to me.

I just wanted to thank you, my friend.  You know who you are. :)

Too Hot, Too Cold, Just Right.

The other day Phenylade Essentials (my formula company that I follow on Face Book)  posted a comic. 

It's a comic that I can really relate to, if not all PKU'ers. 

Imagine... you're on the go.  Going to be gone all day.  So you bring your medicine.  No biggie.  But it's a really hot summer day (and I really can't wait for those right now)  and soon you're formula is disgustingly hot!  EW! 

Who likes drinking warm beverages that are SUPPOSED to be cool?  Not me.

So what do you do?  Some people freeze their medicine so this doesn't happen, some add more cold water, some add ice... I put mine in ice or preferably a fridge for a couple minutes.  Not a long time, because I actually don't like my formula super cold either.  I like mine "freshly made".  So, I try not to wait too long before drinking it.

And if I need all my formula for the day... then I bring the second batch in powder form and make it in a water fountain.

You just do what you have to.

But I'm curious... How do you (PKU'ers) keep your formulas cool?  And how do you (non-PKU'ers) keep other cool beverages cold?  

Scale Evolution

I think we can all agree that Technology has really changed in the last decade.  New and improved versions of whatever device come out yearly (if not more often). 

This includes the geekiest of equipment.  Calculators?  So complicated now.  Don't believe me?  Try operating a graphing calculator. (Sooooo many buttons.)

But this also applies to scales.  Scales?  Why would we be talking about scales?

Well, one of the things a PKU'er needs to do is weigh all their food (weighing food is especially important when it comes to medicine and during certain times of their lives)

... With a scale. 

Over my lifetime I've owned 3 different scales.  And it's funny because you can clearly see the technology development in each one.  Here's what I mean:

Scale 1: The Triple-Beam Balance Scale. 
      This is the scale I've had the majority of my life.  The concept is pretty simple, I'm sure you've all used one (think High School Chemistry).  It's pretty clunky, and is hard to pack.  But, the lack of batteries mean you never have to have a panic attack rush to the store, because you're out of batteries and don't have any of the same type in the house.

  Scale 2: The Digital Scale
     If the last scale's concept was easy, this one is even easier.  You just place the food on it, and it weighs.  This picture isn't the exact scale I used, mine had a few more buttons.  But it's close.  Easy to pack.  But the batteries didn't last long at all.  This one I used for a few years. 

Scale 3: The Sleek Scale
     The latest and greatest of the scales!  It looks so sleek and sophisticated compared to the other two. The batteries don't die quickly (at least not so far).  Of course it is run on those fancy circle batteries that are pretty expensive for something so small (I forget what they're called...).  And it's easy to pack in shape, but the scale is SO easy to turn on that if you don't want to waste batteries you have to be careful packing it. 



Just looking at the pictures you can see the influence technology has had on the scale design.  And that, I present to you ladies and gentlemen is the EVOLUTION OF SCALES. 

Return of the PKU'er

I'm back!!!!!

AND I'm still alive.  AND I came up with some really good blog post ideas.  So get ready!



For the past 5 weeks I've been doing my practicum.  Which means, I've been basically a teacher's aide 3 days a week in a classroom.  But I loved it.!!!  And I miss the kiddos in my class a lot!

Anyways, as a teacher you still have to pay for school lunches.  And it's generally what the kids are eating.  But there is an added salad bar for teachers.  So technically I could've had school lunch.  I didn't want to pay for school lunches.  I've always brought food from home, so the concept is just odd to me.  Plus, it's more expensive.  So, I never did school lunch.

I brought home lunches everyday.  In fact, most of the teachers did.  My first day I had an apple, a package of fruit snacks, pretzels, and a cup of applesauce.  I pulled out my sack lunch from the fridge (literally in a plastic Smiths bag) and looked around.

Every other teacher had these elaborate lunches, whether they were leftovers, or salads, or microwave meals.  And I had brought- essentially- a kids lunch.  The kind I had brought to school from kindergarten until 12th grade.

That's when I decided I needed to put a little more effort into my lunches.  From then on, I'd cook enough dinner to have leftovers for the next day's lunch.  Or I'd throw together a salad before I went to bed. 

It was actually really nice.  I enjoyed being creative and having good solid lunches.  It wasn't even hard.  Lunch was just so much more enjoyable as a meal. 

I guess you could say one of the things I learned at practicum, is that when you actually put effort into food... you enjoy it more. 

Another thing I learned, is that eating in the teacher's lounge NEVER gets old.  :) 

        

Hiatus Excuses.

I'm just going to post a short post this week.  Just an update of my life. 

The next five weeks are possibly going to be the hardest this semester.  I'm completing my Practicum, so I'm actually in an elementary school classroom 3 days a week.  And because of this all my classes are in the evening.

Yesterday I left the house at 8 am and returned at 8:30 pm, and then started on my homework until 11 pm, when I passed out.  And the whole 5-week period promises to be just as bad. 

I'm very tired, and a bit overwhelmed with all the work I need to do. So if I don't post in the next following weeks, know that it's because I'm trying to get everything I need done.   

Thanks for reading this.  Hopefully, I'll be able to post.  :) 

More Than A Disability

Did you know Phenylketonuria is a considered a disability? 

I didn't even consider it until my Senior year of High school, when I was told that I should "get some disability aid for college."  Even then I was in denial about it.  I was pretty smart, I got good grades.  I certainly didn't FEEL disabled in any sort of way.

Yet Section 504 of the Rehabilitation Act covers, "physical or mental impairment which substantially limits one or more major life activities."  (Section 504)  For those who aren't familiar with Section 504 it protects individuals with disabilities from exclusion from any government funded establishment.

The law covers a wide range of impairments from learning problems to diabetes.  Including Phenylketonuria.  So yes, apparently PKU is a disability.

That doesn't mean I'm disabled. 

Something that I learned in my Intro to Special Ed class that when referring to someone with a disability you put the disability at the end.  A person with down syndrome is just that.  A person... who has down syndrome.  They are not a down syndrome person.

You put the disability at the end, because first and foremost they are a person.  I am a person with PKU.  (Note: I do use the term PKU'er.  It's a community phrase and is acceptable in the PKU world.)  I am a person... who just happens to have PKU.

It's something that I've stressed a few times.  People are really complex.  They aren't just one thing.  Yes, PKU helps define me.  It's a big part of my life.  But it's not my whole life.  I have other interests. 

While PKU is considered a disability, I am not disabled.  I am a person who has PKU.  And that is something we need to remember about everyone.  They are more than their circumstances.

I'm sorry if I've ramble along.  I hope I've made sense.  I just have so many ideas and information concerning this subject rattling around in my brain.  It was really hard to get this much on my screen.  (I want to say "down on paper"  but it never was on paper.)  ;)  So thanks for reading.  I'll see you again soon.         

A VERY serious issue... sort of.

I know.  I know.  Unexpected hiatus.  Sorry.  I went on Christmas Break and... yeah.  It was a very relaxing break.

Now this upcoming subject may seem silly to you, but to some PKU'ers it's a real concern!   ;)

The awful, horrible, stinky  

Milk Breath!!!!!!!

Right about now all you non-PKU'ers are wondering: "what's milk breath?"

And all the PKU'ers are nodding thinking, "Finally she gets to an issue I care about."

Well, Milk Breath is a phenomenon that occurs after a PKU'er drinks some of their formula.  You see the formula- though is nutritious and (hopefully) delicious- leaves an odor on one's breath.  PKU'ers are very self-cautious of this fact.  They may avoid talking or even smiling when they have milk breath, which causes their friends to think that they don't like them anymore.      

 But what can one do?  After all, sugar free gum has aspartame (which we can't have) in it.  And chewing sugar filled gum all the time is horrible for your teeth.  

Here are some suggestions that I have thought of (and in some cases even tried):

1. Altoids.  Strong and tasty.  These mints will cover up the smell, and they come in several different flavors.  Plus, people won't loom at you funny for having a package in your purse/pocket.
2. Tic Taks.  Do you remember when Tic Taks were like the coolest things?  Well, they're right next to the gum in the checkout line.  Lots and lots of different flavors.  Although, they aren't as strong as Altoids they are just as tasty.
3. Earth Gum.  It's gum!  Made out of trees.  Just look on the back before buying.  I've tried one brand sold on a PKU website.  But there are other brands and I'm not sure if they're PKU-proof.  Doesn't last long, but then again.  You only need it long enough to cover up your breath.
4. The little "On the go" toothbrushes.  As long as you don't mind either: swallowing the toothpaste or running off the bathroom it's actually a really good idea.  Not as cheap as some of the other options... but your dentist will love you.

I can see some of the non-PKU'ers don't understand.  They are wondering why on earth we can't just brush our teeth 2x a day like a regular person and be fine.

Let's suppose I was a college student.  With an ever-changing busy schedule.  I need my formula during the day.  So, I bring it with me and drink it throughout the day.  Now, I have Milk Breath.  Which makes me feel self-conscious.  

Since it's the middle of the day I don't have time to run off and brush my teeth.  But if I had a pack of Altoids in my backpack... I just slip one into my mouth and be done with it.  TAA-DAA!!!!

And there are my suggestions for Milk Breath.  You're welcome.

(And I hope you didn't laugh once.  This is a very serious matter indeed.  ;)