Thursday, November 22, 2012

Thanksgiving ABC's

Happy Thanksgiving!  Have you ever made a list for things your grateful for?  Seeing as it's Thanksgiving I'm going to just that:
  
A- Apples (they are my go-to snack when I'm hungry)
B- Bread (The PKU kind is very yummy!)
C- Cats (I have black cat that I love very much!)
D- Dogs (see I'm not exclusive ;)  I have a dog too)
E- Electricity (because really... our society depends on it)
F- Friends and Family (Because they are all amazing people
G- Games (I love playing Board/ Card games)
H- Heel pricks that they give babies at birth (that's how they diagnose PKU and without it I wouldn't be typing this)
I- Ice Cubes (living in a dorm w. no ice and tap water that doesn't get very cold has made me appreciate ice cubes all the more!)
J- Jokes (Life would be a lot duller without them)
K- Kids :)  (I have nothing more to say about that)
L- Libraries (Because at heart I'm really a bookworm)
M- Music (It's fun to listen to, sing to, and dance there)
N- Nature (I love being outside, and it's beautiful)
O- Outdoors (It goes with nature)
P- PKU (a lot of who I am is because I have PKU)
Q- Quilts (Love snuggling under quilts on rainy days.  Especially ones made with love)
R- My Roommate (She's a dear, and we get along just great)
S- Smiles (nothing makes me happier than a returned smile)
T- Toothbrushes and Toothpaste (self-evident)
U- Universities (Specifically the one I go to)
V- Vehicles (They make traveling places a lot easier)
W- Water (Water is the elixir of life... really)
X- Treasure ("X" marks the spot! Haha!)
Y- You (because you take the time to read my blog)
Z- Zero, the number (Because Zero is my hero ;) and without it we couldn't go past 9)

Have a great Thanksgiving!

Tuesday, November 13, 2012

Life or Death Rituals

Every PKU'er has their own rituals when it comes to Powermilk.  Whether they drink from a specific type of water bottle, or they add something to the mixture, or even what times they drink it.

If their ritual is messed up in any sort of way, then they feel off all day.  At least I do.

Today one of my rituals was thrown off.  So was my day.   

What are my rituals?  It gets a bit detailed...

My ritual includes:
  • How much medicine I put in my water bottle at one time.
  • How much water I mix with it.
  • What sort of container I use.
  • When I drink it.
If one of these elements are thrown off...  okay.  Well it depends on which one is thrown off.  When is loose factor there. I don't drink my formula at the same time according to the minute.  It's more like "after breakfast".
If any of the other elements are thrown off.  It feels like a life or death matter.

Today I lost my last water bottle on the bus.  I had 2 but the other one was stolen  (I left it where I had been sitting and came back for it 5 minutes later to find it missing.).  So that was my last one.  My roommate lent me her water bottle but it's made differently... and I have to force myself to drink my medicine, because it's not what I'm used to.  (Fun Fact: It actually tastes different in different cups.)  So now I have to go and buy a new one, as soon as I can get to the store.

I know.  I know.  Stop complaining, this is a blog about PKU not a diary about you!  I'm sorry I'm off my game.  Like I said.  If the ritual is messed up... my day is messed up.

I know other PKU'ers who have other rituals.  I know a girl who adds strawberry syrup to her milk, and another who adds Sunny-D.  Everyone has their assigned "Powermilk" cups, and those few brave souls who drink out of a cup I applaud.  So it's not just me.  And I knwo they feel the same way I do about their rituals.  
Do any of you have rituals like that?  Where if you don't do it or it changes slightly you're whole day is... off?  (I dare all you to answer me back- and I know your reading this because I can see the stats.)

Thanks for reading this.  Thanks for finishing this.  Thanks for visiting my blog at all! :)  Have a good day!    

Monday, November 5, 2012

New Holiday Declared! ...Sorta.

Remember that post PKU Awareness Month? 

Well, there have been many different days that people would call "PKU Awareness Day".

I merely picked one of those days and made it my PKU Awareness Day.  Except I made it a month.  Because finding something to do to celebrate PKU everyday that month was fun!  It was something fun to do. 

Now Congress has officially made a PKU Awareness Day. Seriously.   

It's on December 3rd.

So make sure you celebrate it!

On npkua.org they have a list of 10 ways to celebrate it, and bring awareness to the world.  You can check those out on the website if you really want to.  A lot of it is "organize a dance-a-thon to raise money for PKU Awareness".  And those ideas are good too.  But I'm going to give you a list of 10 fun, little things you can do: 
  1. Since PKU is represented with blue- wear AS MUCH blue as possible!  Maybe spray blue hair coloring in your hair to make it blue too! (Make sure ll wash out)  Or you can go the easy route and wear a blue shirt.
  2. Make an ALL PKU meal for your family and /or friends.  :)
  3. Pass out PKU Stickers to everyone you meet. (And make sure they wear them!)- or just wear PKU stickers yourself.  I don't know where you'd get stickers... maybe you could make them!
  4. If you have PKU you can have fun and experiment with your formula.  (In my case I'd turn it into a smoothie)
  5. Make a t-shirt.  Put anything PKU related you want on it.  You can just print out a design on some special paper that allows you to iron on the design.  If done correctly this will last a long time. :)
  6. Post fun facts, or pictures about PKU on Facebook, twitter, tumblr... whatever you guys use. 
  7. Put up a poster in your window.  Make sure to use blue!  
  8. Throw a PKU Party and serve PKU snacks!  
  9. Write a song about PKU.  (Or a parody... those work just the same)  I want video footage if you do this one though!
  10. Make your dieticians happy keep a diet record for the day and see how you do.  Are you eating too high or too low?  Make adjustments.  :)  Then email your dieticians a thank you note.  They use a lot of chemistry and it's hard. ;)  Or you could just skip to part 2 and email your dietician.
Although many of these ideas are geared towards those with PKU you can celebrate if you don't have PKU.  I'm going all out this year.  I promise!!!  I want to hear about what you guys do for this year's PKU Awareness Day!  Email me pics, comment in the box below, give more great ideas for next year!  Just make sure you celebrate PKU Awareness Day!