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.  ;)