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!!!