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.)