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.  ;)