2013- PKU AWARENESS DAY!!!

HAPPY PKU AWARENESS DAY!!!

Honestly, it kinda snuck up on me this year.  But don't worry I did celebrate it.   :)

I wore a PKU Blue shirt and am making a nice low-pro dinner tonight.  I know, I know.  I could've have done a lot more to celebrate.  

I wanted to paint PKU on my cheeks and wear it around campus.  But I had a huge presentation today and needed to look nice.  (I've been worrying about it all day.  But not it's done for better or for worse.) 

But, even though I was lame this year other people weren't.  I know for a fact, that there was a Bakery in Texas that was serving PKU cookies.  And people have been changing their profile pics to the picture that I pasted above.  People are really getting into the spirit of things.  

And it makes my heart feel warm.  :)  

So once again!

HAPPY PKU AWARENESS DAY!!!!!!!!!  

 

Cook For Love

Okay guys, this one is going to be a quickie.  :)

The other day, one of my PKU friends posted a link on facebook: www.cookforlove.org

It's this really cool site that posts good PKU recipe ideas!  

Here's the bio for it:
"Cook for Love evolved out of two stubborn moms’ belief that even given the severe dietary restrictions, people with PKU should not have to settle for less when it comes to the enjoyment of food. When her daughter Molly went to kindergarten, Brenda Winiarski enrolled in culinary school. Together with Rosie Loughran, whose son Liam has PKU, they formed a not-for-profit called Cook for Love, Inc.
The founders recognize and respect that people with PKU lack a liver enzyme, not taste buds. They both struggled in the kitchen when their children were diagnosed with PKU trying to come up with foods that their children could eat and the entire family would enjoy. Their goal is to simply help you avoid some of the frustration they felt.
Through an on-line culinary website, Brenda and Rosie provide step by step instructions to make a meal that you or a loved one will truly enjoy.
Whether you love to cook, or are doing it solely out of love, join them on www.cookforlove.org as they share their recipes and experiences."

I am super excited to start trying some of the recipes out. :)  But if you're in dire need of a new PKU recipe, this is the place to go. 

Now I have been getting a few questions about me.  The mysterious writer.  Here's a quick update on my life:  I am a college student (sophomore) and am still studying to be a teacher. Actually, my technical major is Deaf Education, and I hope to teach at a Deaf School one day. 

That's basically it. :)  Anyways, thanks for reading!  See you again!   
 





 

Veggies... In a Bag

So, the other day a roommate and I tried this recipe for a really easy healthy snack; and it turned out so good, I had to share.

Veggie Bag
(Or at least, that's what I'm naming it. )

Ingredients:

• Olive Oil
• Salt/Pepper
• Garlic
• Lemon juice
• Various RAW Veggies (We used celery, carrots, broccoli.  But I'm sure other veggies would take delicious in this too.)

Instructions 

1. In a small bowl pour some olive oil.
2. Mix in lemon juice, salt, pepper, and garlic (according to taste).
3. Cut veggies into eatable sizes.  
4. Put veggies in a bag (we used a gallon sized bag, but it was for more than 1 person).
5. Pour the dressing into the bag with veggies.     
6. Shake the bag, dance with the bag, and throw it into the air repeatedly.  This will get it all mixed up, so that all the veggies get some dressing on it.  If you feel boring you can just shake the bag, but I really recommend the dancing.
7. Eat it!  Straight from the bag, or poured into a bowl.  It doesn't matter.  

(Sorry I don't have proportions or measurements up here.  My roommate and I literally just smelled the dressing to figure out what it was missing and poured blindly.)

Have fun trying this recipe.  I think it's really tasty.  See you next week! 
   

Must be November...

How lucky are we? 

We all have so many blessings. 

When my Grandma was in nursing school, it said in her textbooks that PKU'ers got permanent brain damage early in life.  There was nothing anyone could do.

Now... PKU'ers can life a perfectly happy life while on a diet.

Maybe in the future there will be one little pill you have to take once a day, that makes it so PKU'ers don't have to be on diet.

But for now.  We're blessed.

The PKU Community is exactly that.  A community.  There are activities, and summer camps.  There are seminars and once a year there's a National PKU Meeting.

We can buy Low-protein foods online.  And not from just one company!  There are a lot of companies out there that cater to PKU'ers:

•  Cambrooke
• Dietspec
• Ener-g
• Med-diet
• Medical Food
• My Special Diet
• Maddy's
• Pku Perspectives
• Taste Connections

There's probably more out there. 

But that just covers the food.  There are a lot of PKU Formula companies as well (some of them serve both PKU food and formula).  If you don't like the taste of your formula... there are so many other options out there.  And they just keep getting better and healthier for you all the time.

I love trying out the new formulas.  Who knows if it'll taste better than the one I have right now?  (I seriously doubt it, because I really like my formula but...)

I digress.  Point is:  PKU'ers are blessed.  We have it a lot easier than those who came before us.  We have so much to be thankful for!  So this Thanksgiving, don't forget to add PKU onto the list of things you're grateful for.

P.S.  I'm also grateful for you!  Because most likely, if you're reading this then you have been following my blog for a while.  And have listened to what I have to say.  So thank you. :) 

       

The Way Into a PKU'ers Heart

Okay it's time... I've had this topic stirring in the back of my mind for a while.  And I think I'm ready to share it to the world.

I've done a couple posts about dating (Food And Dates, A Real Date-Killer, Oh, You're a Salad Eater?)  Mostly about keeping the status quo, trying to make a good impression, what to so about food on dates... All important.

But today I'm going to let the world in on a little secret. (Especially to those dating a PKU'er.)

One of the biggest things a PKU'er wants is someone who'll make an effort to understand PKU. 

It's complicated.

 We get that.  We probably don't understand all of it ourselves and we've had to deal with it since birth.  But making that effort to understand... that makes the world for us. 

I know it sounds contradictory to what I said in "A Real Date-Killer".  But hear me out. 

When I was younger (remember I was MUCH younger and quite the romantic!)  I used to imagine meeting someone.  While talking to me I would accidentally let it slip about my diet.  He'd find out what it was called, and then instead of asking me about it endlessly he'd look it up on the internet.  Then he'd bring me the stack of blog posts and articles he was trying to make heads or tails of, and I'd answer his well-researched questions. 

I know what your thinking but I was like 10 or 11 at the time! 

Here's the difference between what I described in "A Real Date-Killer" and in my young daydreams. 

When your on a date, you're supposed to be getting to know about each other.  What's your favorite color?  Do you have a pet?  Would you rather put your hand in a box with an unidentified snake or a mechanical whirring sound?  PKU (especially on a first date) tends to hog the conversation.  So you don't really get to know each other!   

When you go look it up yourself, it shows that your interested in them.  You are willing to live with PKU in your life.  You're willing to understand them.  At least to me, that kind of act would melt my heart.  (Then again if you're reading this... you're probably already looking up PKU.  So... good for you!)

Anyways, go on with your lives.  Thanks for reading this silly post of mine.  :)

Restaurant Review 5: A Classy Place

          Last week I ate at a fancy place called: "The Blue Lemon". 

It had a huge line and was full to the brim.  But that only testified to how good it really was. 

And the food was good. 

There were soups, sandwiches, and pastas.  As well as several different sides: sweet potato fries, rice, dips, fruit, veggies, and salads.  Sounds ideal right? 

Well, all the main dishes had meat and cheese and all that.  (No surprise.)  But there were several side dishes that are PKU proof.  And like I said before...

The food is delicious. 

WARNING:  The side dish portions are small.  I blame the classiness of the place.  So order accordingly.

Yes.  This place is classy.  Very classy.  I would say it was a 5-star place, but it really isn't.  It's like a mixture between a really fancy restaurant and Zupas. 

As you can tell, I liked this restaurant.  :)

But how friendly is it on the PKU Scale???

Probably a 9 (out of 10). 

It would be a 10 IF the serving sizes on the side dished were bigger.  That way you could just order a side dish and be good.  They have plenty of options of side dishes.  Really unique ones that other restaurants don't have.  Which I love!

I don't know about you but I get tired of the salad or fries option. Hmmmm... maybe that could be a different blog post. 

Anways... conclusion: The Blue Lemon is a great place.  Fancy but not too fancy.  Great food.  I'm definitely going to go back there.      



 

So You're Thinking About Applying For The PKU Scholarship...

The last couple posts I have mentioned that I was working on a big project.  Well it's time to reveal what it was...

The Gunthrie-Koch PKU Scholarship!!!

The deadline was today (October 15th).

So I decided to write a short guide based on my experience to applying for this awesome scholarship.

1. First off, start early.  I would suggest around August maybe even mid-July.  It will take at least a month, and October is around mid-terms.

2. Print everything out.  ESPECIALLY the checklist!  The checklist will help you make sure that you have everything when it's time to mail off.  Believe me, you will thank me for this tip. 

3. Start by ordering your ACT.  It will cost money, but think of it as an investment.  If you get the scholarship, you'll get your money back.  Also, getting your ACT processed and mailed will take around 2 weeks normally.  If you order it priority it will cost a lot more.

4. References.  You need 3 references as well as a reference from your clinic.  Talk to your dietician or doctor and ask them to do it for you.  And choose your other 3 references carefully.  You need someone who won't constantly forget to do it.  Make sure you drop off the papers and pick them up personally.  Have a definite deadline.  People are busy, so YOU need to be on top of it.

5. Transcripts.  YOU NEED BOTH YOUR HIGH SCHOOL AND COLLEGE TRANSCRIPTS!  I almost didn't catch this.  So I just want to make it clear for others.  You need both.  They shouldn't take long.  Just make sure to get it done!

6. Just sit down and fill out the packet.  It's the easiest part of the scholarship.  The trick is actually sitting down and DOING it.  Pick an afternoon.  Sit down.  Do it.  WARNING: There are financial questions, so you may have to ask your parent's about income at some point.

7. Essay Questions.  Honestly you should read the essay questions back up near the beginning.  Then spend the whole process thinking about your answers.  That way you already know what your going to say when you start typing.  It's easier.  Remember: they're looking for excellent students with PKU.  So it's okay to put yourself in the best light.  How else are they supposed to know how great and deserving you really are? 

Just keep chugging away at it.  It'll be over... eventually.  :)

Here is the official webpage:                
http://www.pkunews.org/guthrie/guthschol.htm

Good luck!

(And tip: If you're coming up at the deadline and aren't quite finished it's okay to ask for an extension.  If it's still before the deadline, you'll still look like a professional.  People have to ask for extensions on projects all the time.  Just make sure you ask BEFOREHAND.  Otherwise it's just late. )

Wish me luck with my application! :)

PRISM301

YAY!  I post on Tuesday again!  (I'm almost done with that project.) 

Now before I get into my main topic today, first things first.  PLEASE ANSWER THE POLL THAT'S TO THE LEFT OF THE SCREEN (where the quotes of the week usually are)!  I want to write posts that interest you.  But in order to do so, I need to know what you guys are interested in. 

In fact, go do that right now.  I'll wait.

................................................................................................................ Done?

Good.  Moving on.

Do you remember a certain post about a medication that goes by the name of PEG PAL?  If not that's okay.    (here's the link if you want to take a look at it: http://www.blogger.com/blogger.g?blogID=7281517512816906548#editor/target=post;postID=350263321752237644;onPublishedMenu=posts;onClosedMenu=posts;postNum=31;src=postname) 

It basically talks about PEG PAL and what it is. 

Well, here's an update.  PEG PAL is in experimental human testing.  The study is actually being called the PRISM301 STUDY.  I actually got a flyer about it early August.  Apparently you qualify if you are:

• 18-70 years old
• Have a diagnosis of PKU with a high Phe level
• Have not yet received PEG PAL

You need a high Phe level so that they can see if PEG PAL works on lowering it.

During the study you're supposed to stay on your PKU diet.  You meet with the study clinic several times. (I'm basing this information  off of their website.)  During the appointments you will participate in blood and urine tests. They'll teach you how to give yourself the injections, and you'll do so once a day, and you'll keep a diet record for three days before certain tests.  Then there's a weekly phone call update.

Sounds like a lot.  But it IS a study.  And imagine if it worked? 

I'm not doing it.  I  know how that sounds.  But here my reasoning:  I'm a poor college student with no car.  The travel reimbursements wouldn't cover my travel costs.  And I'd have to miss a lot of school.  So... maybe later.  Probably not.  It will probably be done with testing before I'm done with school.  But maybe...

Anyways, if you want learn more about the PRISM301 Study the website is: www.pkutrial.com. 

See you all next week!

Nothing But Stress

Remember that project I mentioned last week?  Still working on it.  So once again, I'm sorry for the late post. 

Between this project, midterms, the ever-present social drama, and bad weather I'm finding myself in a lot of stress. 

Did you know that stress is made up of external or internal factors and that your body simply responds to it?  Well it does. 

When your feeling stressed you trigger the locus coeruleus (a small part of your brain next to the brain stem).  That triggers the hypothalamic-pituitary-adrenal (HPA) axis and the sympathetic nervous system (SNS). 

The SNS releases epinephrine and norepinephrine.  Which are stimulants.

Everyone reacts a little differently to the stimulants.  But some symptoms that is very common is an increased blood pressure.  Basically your body is getting into "Fight or Flight Mode".  Short amounts of exposure to stress isn't bad.  In fact, it can be quite healthy.  However, long exposures to stress is bed for your body; especially for the heart.

So... 

Some good things you can do for stress include:

1.    A 20-30 minute meditation session
• According to www.medicinenet.com (note: link doesn't work) "A one or two 20-30 minute meditation sessions a day can have lasting beneficial effects on health."  Some adaptions I think would work include: taking a nap, having some quiet time, or writing in a journal.
2.  Yoga
• Yoga uses breathing exercises, meditation, and light exercise. Because of this it's considered one of the best stress relievers.  Plus if you continue to do yoga your body can handle stress better.
3. Happy Music
• Music affects the way you feel.  So when your stressed and you listen to happy music with a positive beat, you're going to feel happier.  If it helps go ahead and dance to your music.
4. Breathing Exercises
• If your in a time crunch and don't have time to meditate or bend in half... just breath.  Breath slowly.  Become aware of your breathing.  It's actually a really cool activity.  When you just focus on your breathing, everything else just kind of fades away.
5. Laugh
• Go talk with friends.  Play games.  Laugh.  De-stress. 
6. Exercise
• Actually according to recent studies (that I read about on www.medicinenet.com ) exercise is one of the best... if not THE BEST thing you can do for stress.  Since your body is already in fight or flight mode, it's ready to go.  It's ready for action.  

Life is stressful.  There are always things that need to be done; things that demand our immediate attention.  But it's not healthy to life in a constant state of stress.  No matter who you are.  So, net time you're feeling really stressed try one of these out. 

Thanks for reading. :)

Restaurant Review 4: How Hot Is Too Hot?

What I know about Mongolia:
1. Genghis Kahn created the empire, which became the country.
2.  They have good food. 

How do I know this?  Well the first one is thanks to Wikipedia and google.  :)  The second one I experienced firsthand when I was taken to HuHot Mongolian Grill. 

Okay, so you walk in.  It's this nice place with a nice atmosphere... good music playing.  But the most impressive thing that catches your eye is the round grill.  You can't wait to see it up close.  But before you wander up to it; a host comes up and seats you. 

That was my first impression. 

Once seated, Drinks and appetizers are ordered.  (By the way, they have the cool drink machine that can get you several unique flavors of any soda.  I ordered a Peach Sprite!)  As far as PKU proof appetizers are concerned there's only one: Spring Rolls.  (Since its a buffet, I skipped the appetizers and moved on to the main course.) 

Which is the best part of the whole meal.    The server gives everyone a bowl and you head a build-your-own-Asian -food -bowl Station. 

First, the noodles.  They have 3 types including egg noodles.
Second, veggies.  Fill the bowl up!  They have all sorts of grill-able veggies. 
Third, ladle the sauce on.  Choose a sauce... or a variety of sauces!   I was told 5-6 ladles of sauce is enough.  Any less and it'll burn onto the grill.  Don't know what sauces are PKU proof?  They list ALL the ingredients RIGHT there on the signs!!! (Oh and they also list how hot each sauce is.)

Then comes a cool part.  You give your bowl to a griller.  He dumps it onto the grill.  It's way cool to watch him work!  And sometimes, to clean the grill he sets it on fire!  SO COOL!

Then you try it.  If you don't like it... you can tell the server and he'll take it away.  And you can try again! 

It's a lot of fun! As well as really tasty! 

I like it a lot! (As you can tell.) 

Only problem... it's pretty expensive.  Dinner is $13 each.  Lunch is $8.49 on weekdays, $10 on weekends.     

Well, I guess it IS a buffet. 

How does it rate on the PKU friendly scale? 

• Well based on the many different options they give you as well as labeling the sauces...  I'd have to give them 8/10.  They could have more PKU friendly appetizers and desserts.  But they scored pretty good.  And I'd recommend this restaurant to anyone craving Asian food anytime.  :)

*Sorry about this post being late, and not as well-done as usual... I'm currently working on a big project.*   

 

Basic PKU Genetics

PKU is a Genetic Disorder. 

It's literally a mistake in the DNA causing a mutation of sorts to occur.  This mutation happens in the PAH gene.  Usually the gene converts phenylalanine into nutrients we can use.  Ours can't. 

The mistake is genetic.  That means it carries on down the generations from parent to child.  It is also recessive.  It needs both parents to "carry" the gene in order for it to be apparent in the child.  If one parent is not a carrier, then the gene is smothered by the dominant gene.

So to get a PKU kid you need each parent to be a carrier.  Simple. 

But what happens when the PKU kid grows up and starts their own family?  What happens to the genes then? 

Well, that depends on the person they are marrying.  I drew a couple pungent squares to illustrate the concept.  (excuse my not so good pictures)

First off:

• The non-PKU gene is a "X"
• And the PKU gene is a "x"   

A non carrier will have "XX"
A carrier will have "Xx"
A PKU'er will have "xx"

First diagram: If a PKU'er marries a PKU'er

 

Looking at the diagram you can see that each kid will have a 100% of having PKU.

 

 

Second Diagram: If a PKU'er marries a Carrier

Looking at the square you see that each kid will have a 50% chance of having PKU and a 50% chance of being a carrier.

 

Last Diagram: If a PKU'er marries a Non-Carrier

Each kid will have a 100% chance of being a Carrier.

 

Now, look at the way I worded each chance.  "Each kid."  It's like rolling a dice.  If you get a 6 on one roll, does that mean you can't get a 6 on your next roll?  No.  For each and every child there is the same amount of chance that they will have PKU as they will be a carrier (at least if you marry a carrier). 



So, basically.  Those are the statistics for a PKU'er who decides to get married and have a family. 

Genetics is fascinating.   

Have a wonderful week!

Explaining PKU: In 3 Different Ways

How does one accurately describe PKU without misleading people?  How does one brush off the subject, because they have somewhere to be?  How does one give enough information without making the listener's head explode? 

In general, what does one say when someone asks about it?

This is a problem that I'm fairly confidant every PKU'er has pondered.  (And if not they are now.)

Well, how much time do you have?  And how well do you know them?  (Imagine giving the person next to you on the bus a detailed explanation.)  And how interested are they really?  (What if they ask just to be polite?)

Here are 3 different ways to describe PKU going from general to detailed. 

1. PKU For That Total Stranger On The Bus
• Phenylketonuria just means I have to be on a low protein diet.  (And beans and soy and tofu are still high in protein!)
2. PKU For Polite (but Clueless) Friends
• Phenylketonuria is a genetic disorder where I can't digest proteins as fast as other people, and the excess proteins block my brain synapses.  What it basically means for me is that I have to limit my protein intake with a special diet.  I count how much protein I get a day, just like some people count calories.  I just stay in a range of _______ (equivalents, mg, however you count it) and I'm fine.  :)     
3. PKU for PKU Enthusiasts (that may or may not be out there)
• Phenylketonuria is a genetic disorder where my body can't digest a certain amino acid: phenylalanine.  (Amino acids are the building blocks of protein.) Phenylalanine is used to make Tyrosine, which is very important.  That's why I drink my (insert whatever you call your formula here).  It gives me the tyrosine that I need, as well as other nutrients that I don't get because I'm on a low-protein diet.  I need to be on a low protein diet because the phenylalanine (as it builds up) leads to high Phe levels in the bloodstream.  Which leads to problems with thinking and behavior.  That's the reason why I need to get  my blood tested frequently.  So I can adjust my Phe intake as I live.  If I go off-diet it can lead to brain damage.  Which is pretty scary so I want to stay on diet.  But thanks for listening and thanks for really caring about my diet.  It really means a lot to me to have someone who really wants to understand. 

There!  Now you have a way to describe PKU in most situations.  :)  And worst comes to worse, and they just don't understand... tell them to google it.  OR EVEN BETTER!  Give them my blog address!  They can read this and problem solved. 

I was just reading back and I really like that PKU Enthusiasts reply... now all I need is for someone who knows nothing about PKU but really wants to know everything about it to come up and talk to me.  Haha.  :) 

Anyways, have a good week.  And be happy knowing you have a ready made speech for the next person who asks about PKU.  :)  Smile!
  

Kryptonite

My Kryptonite is Math. 

That's not so unusual; it's a lot of people's Kryptonite. 

Recently I read an article that indicated that math is the Kryptonite of most Classic PKU'ers (which I am).  (the article is: http://pkuinfo.org/_media/pku/antshel_2010_mgm.pdf )

And it doesn't seem to be a coincidence!    

We all know that PKU affects the logic and math center of the brain first.  But the people in the test were already diagnosed and treated early on! 

Here's the abstract of the paper:

• Despite having average intellectual abilities, academic difficulties are relatively common in children and adolescents with PKU. These academic difficulties may be a function of attention deficit hyperactivity disorder (ADHD), executive functioning deficits, and processing speed deficits, all of which are known to affect academic performance in non-PKU populations. This review focuses on what is currently known about academic performance in youth with PKU and offers suggestions for future research.

Basically what they've found is that treated PKU'ers that do well in school still have problems with math.  If you look closer at the article it says that they don't really know the reason why PKU'ers have issues with math in particular.  But a logical guess (based on non-PKU people) is that it has something to do with ADHD, or processing deficits, or something like that. 

Here's my own experience with Math and PKU:

     As a kid I had a set-back with math.  I moved from one school district to another and the curriculum didn't quite match up.  As a result I learned my times tables in 5th grade... with help from my parents.  By 6th grade I had pretty much caught up.

    Then middle school arrived and so did Algebra.  I was an average student.  I had trouble with tests, but my teacher was willing to work with me.  And I was fine.  In 9th grade that teacher even invited me to be a special program where you take 2 math classes in 1 year.  (Apparently my CRT scores were pretty high)  I was the worst in the class.  But I still passed. 

     High school.  10th grade I took Pre-Calculus.  It was a rule that year that you couldn't have lunch unless you got at LEAST an 80% on your tests.  I spent pretty much every lunch that year in the math classroom, trying to pass each lunch.  It was embarrassing!  I had to take each math test at least 3 times to pass it.  And by that point I'd just memorize the questions.  The next year, I repeated PreCalc, I chose to.  I didn't want to be in AP Calculus unless I KNEW how to do PreCalc.  They had changed the rules for that year.  (Thank goodness!)  And to pass you had to have a test score that corresponded with how much homework you turned in.  That year my math teacher (different guy) just let me fix my mistakes on my test and turn that in. 
 
    12th grade.  I took AP Calculus.  I got good grades (despite my pathetic test scores).  And I flunked the AP test. 

From my experience I have observed a few things.  I would understand the problems in class.  I would understand it on my homework.  And yet... I wouldn't remember it on my test.  I took the ACT test twice.  The first time: I got a 24.  The second time: I got a 21.  Now I didn't study at all for the 1st one.  But the second one I did!  And still got a lower score.

It was like I had good math days, and bad math days.  And I had no way to predict what it was going to be!  It was frustrating!  I began to loathe math! 

But, it seeing this article... helped me understand that it wasn't all me.  Yes it was partially me.  I still needed to study.  I still needed to try my best.  I couldn't blame the PKU for everything. 

     It's small setback.  A little bit of Kryptonite. Kryptonite hasn't killed Superman yet.  So I guess I'll just have to live with it.  And become a little stronger, just to compensate.




 

The Tigger Theory

The other day I attended an inspirational talk about "Being Happy".  And something the speaker said really stuck out at me.

 He said: "Why be an Eyore when you can be a Tigger?"  (The speaker's name is Kevin Miller for anyone who's interested.)

I took that question and expanded it in my own way.

So... what's the answer to the question?  Why are we Eyores when we could be Tiggers?  What makes a Eyore and what makes a Tigger? 

Eyore is an old, depressed donkey that has a tendency to loose his tail.

Meanwhile Tigger is a delightful, exuberant tiger that's always bouncing all over the place singing his little chants.  Even the way he spells his name is dramatic with a

"T-I-double GAH- ER". 

So why would want to be Eyores?  Being a Tigger sounds a whole lot more fun. 

Let me go off on a little tangent and somehow return to this question later on.

One of Tigger's favorite chants goes like this:  "The wonderful thing about tiggers, Is tiggers are wonderful things! Their tops are made out of rubber!  Their bottoms are made out of springs!  They're bouncy, trouncy, flouncy, pouncy.  Fun, fun, fun, fun, fun!  But the most wonderful thing about tiggers is I'm the only one!"

Everyone is different. 

For example, I'm fairly certain I'm the only left-handed, LDS girl with PKU that writes blogs and stories, and is a total bookworm.  (And if you find anyone with these characteristics that's not me, let me know!  I want to meet this girl!)

Tigger is happy because he embraces his individuality.  He likes being different. 

Now apply that to PKU... (because that's what this blog is dedicated to)

PKU makes you unique.  Embrace it!!!  Teach others about it!  Wear it proudly on your shirt!  (Seriously, if you make a shirt email me a pic!)

Be a Tigger!  Stop worrying about what people think about you and embrace your uniqueness!

Don't be an Eyore, all gloomy and sad.  Worrying that people will think you're weird because you're always carrying your formula around.  Worrying that people will ask why you aren't eating what their eating.  Worrying all the time that people will find out you're different.

STOP!!!  You can be different and still be happy!  People will probably ask questions about PKU; answer them proudly.  People will probably say, "I'm so sorry!!!"(Or some other irritating comment that makes you want to grind your teeth.)  Be nice.

Just remember:

Be different. 

Be a Tigger.

Be Happy.

BE YOU!         






   

Beating the Heat

I don't know about you guys, but where I live it's been in the 100's most of the summer (degrees Fahrenheit).  No one wants to cook when it's already boiling outside, in fact no one wants to GO outside!  So we've had to be pretty creative to "beat the heat" and still have a fun summer.  Here are some fun HOT day things:

1. Make Popsicles!  (SUPER easy.  Just make juice or lemonade and put it in ice cube trays.  After it's firmed a little, put in toothpicks and let it freeze all the way.)
2. Go to the pool  
3. Visit a beach/lake/ pond SOMETHING like that.  If you aren't near one you could always make an indoor beach and pretend (great for little kids)
4. Play in the sprinklers/ have a water fight (not JUST for little kids. ;)
5. Freeze some fruit and eat that.  Healthy as well as delicious!
6. Make a smoothie! ;)
7. Set up a tent and sleep outside (watch the stars they're amazing!)
8. Take walks in the evenings when it's cooling down.  (I know in my neighborhood, everyone is outside then so it's a great chance to socialize)
9. Go for an ice cream run.  
10. DRINK LOTS OF WATER!!!  (This is really important on hot days.)

Stay cool, and hydrated.  And have a great week!

*Note:  I know this isn't one of my typical PKU Posts, but if you look closely it definitely is influenced by my PKU lifestyle. :)*

Cheddar: A cheesy sequel

Last week I gave everyone the recipe for Mozerella cheese.  This week I'm giving you the recipe for Cheddar (thanks to sweetroots.blogspot.com for the recipe).

Coconut Milk Cheddar Cheese
Ingredients:

• 2 cans coconut milk (full fat, thai kitchen brand preferred)
• 3 Tbsp agar flakes* (see note below if using agar POWDER)
• 1 tsp balsamic vinegar
• 4 Tbsp tapioca starch
• 1 tsp smoked paprika
• 1/4 tsp liquid smoke
• 2 tsp sea salt
• 1/4 cup nutritional yeast (optional; but definitely gives it more cheesy-ness)    
• Pinch of Turmeric (optional; but gives it an authentic cheese color)

 Instructions:

1. Boil coconut until no longer separated.  
2. Add  white balsamic vinegar, agar flakes, and salt
3. Boil for 15 minutes (no need to boil if using agar powder)
4. Add remaining ingredients one at a time, whisking all the while.  
5. Cook another 5-10 minutes.
6. Remove from pan and but in greased, flat bottom glass dish, or parchment paper lined loaf pan (or rubber loaf pan).
7. Let cool 2 hours.  You could stick it in the fridge when cool and use the next day!  
8. Slice and enjoy (if put in fridge you can actually grate it!  Even if it's more slippery)

 *Note: Agar powder speeds this wonderful process of veagan cheese-making.  With the agar powder you don't have to boil it nearly as long.  Use only 3 tsp of powder!  After you add the vinegar, agar powder, and salt to the milk mixture, let it get a good boil then add all the remaining ingredients one-by-one, whisking all the while.  Remove from heat and place in container.  

   

Have fun with that Cheddar Cheese!  Bye!

Mozzarella Cheese... LOW PRO STYLE!!!

My family makes its own cheese.

That sentence makes me feel really self-sufficient.  Though if I were to be totally honest it's PKU cheese, and it's my mom who mainly makes it.  Haha. 

But now I have the recipe.  So I can make it when I move back to college in the Fall.  And soon you will have it too.  So you can try it too!

Enough chat, here's the recipe:  (it's very very good!)

Fresh Vegan Mozzarella Pizza

Ingredients:

• 1 can good-quality coconut milk
• 1 tsp coconut vinegar
• 2/3 tsp salt
• 3/4 tsp agar powder
• 1 TB tapioca flour

 Instructions:

1. Place the coconut milk into a small saucepan over medium-low heat.
2. Whisk until well-emulsified (aka liquified evenly )
3. Add in the vinegar, salt, and agar
4. Whisk frequently for about 15 minutes or until a small boil occurs
5. Reduce the heat immediately 
6. Mix the tapioca flour  
7. Heat for 5-10 minutes more
8. Transfer to a flat bottomed glass prex dish to slightly gel for about an hour (we actually used silicon bread pans for this, and it worked)

 Then you are done!  You've made your own PKU CHEESE!!!  Don't you feel accomplished?  ;)  

Anyways credits for this recipe goes to www.olivesfordinner.com for their fabulous recipe, that my mom found one day.  They have some pretty good stuff if you want to check it out.  

Thanks!  And I'll see you soon! 
    

Living Examples

     In the past year I have met 3 different people who were all put on diets recently.  The diets were restrictive.  No dairy, no eggs, no grains... basically carbs and veggies. 

Does that sound familiar?  It should ;)  I've been talking about a diet like that for a couple years now.  Haha.  The diet they are on is NOT PKU (there are some differences)  but it is strikingly similar.

In fact, those 3 people have asked me "how I do it".  How do I find things to eat?  How have I followed my diet after all this time? 

     Here is my answer: (note: these individuals were put on their diets after years of no restrictions, which is always harder than following right after birth like I did.)  I just do it week by week, day by day.  I'm not perfect at it (who is?)  But I try.  There are lots of things you can eat.  You just have to look for them, and find things that you like.  True you have to cook a little more than the average person... but honestly home-cooked food TASTES better.  You just need to look,and experiment, and find things you like.  People tend to fall into eating grooves.  Just find your groove.  You'll be okay.

     Just by following their diets PKU'ers are great examples to people put on medical diets.  As I've talked to those three people and given them ideas, I feel like I've helped.  People can look at me as an example. of someone who is doing alright on a diet.  Then maybe they can feel more confident about their own lives. 

     I just want to ask PKU'ers one thing: PLEASE don't be shy about your PKU.  You could help so many people, and not even realize it at the time.  You could be an example that they look up to.  It's just one thing that's helping me stay on my diet, and helping me continue this blog.  So that I can help people.  Which as I grow is something that has become important to me. 

     So today blog post in 10 seconds:  PKU'ers be an example to other people on medical diets.  People on medical diets?  You'll be okay.  Just live it day by day.  :)

Okay, well see you soon.  Thanks for reading this. 

At the Check Out Stand

Recently I got a job at a grocery store.

And today I noticed something...  most people don't get fruit and veggies.  They get chips, and crackers, and soda, and candy, and other junk food.  But most of all they get meat.

I'm not anti-meat just because I can't have it.

But until today I never known so many different types of meats existed.  Or that the regular person used so much.  They hardly ever got fruits and veggies.  And when they did it was either: potatoes, apples, bananas, or grapes.

Then there are those who get LOTS of fruits and veggies.  And they are super healthy and buy only health foods.

I love fruits and veggies, and I just wanted to put a plug out there that fruits and veggies are GOOD!  They taste good, they are versatile, they are healthy.  You don't have to go all health-nut to enjoy some good fruits and veggies!

So below are a few of my favorites (had to limit to top 5) and some ways to enjoy them.

My Favorite Fruits are:

• Coconut (yes it is a fruit)- A PKU'er can do so much with this!  I use coconut milk in all sorts of recipes, but it's also very good just shredded.
• Apples- Very good raw.  You can also dip them in almond bark, or cut them into slices and pour lemon juice on them, or you could caramelize them.
• Pineapple- This fruit tastes carbonated.  A good healthy snack when you feel like having a soda.  It's also good grilled, on a pizza, fresh, or dipped in almond bark.
• Grapes- Frozen grapes are perfect for a warm sunny day.  But grapes are also good fresh, or in a fruit salad, or a smoothie.
• Bananas- I HAD to mention the Banana.  It is the base of EVERY good smoothie.  :)  And it's good in almond bark, or fresh, or frozen.

(Yes I know I just listed some of the most common fruits bought, but they're popular for a REASON and I never said I didn't fall into the same rut.  I just noticed it today)

My favorite Veggies:

• Bell Peppers- Doesn't matter the color, bell peppers are delicious.  You can roast them, eat them with a dip, have them raw, or add them to a stir fry.  
• Potatoes- Even though the potato has practically no nutritional value.  We all love it.  You can roast them, mash them, fry them, make hash browns.  They are very versatile.
• Corn- Again, not the healthiest of the veggies.  But they can be grilled or steamed it is really yummy.  
• Carrots- Dipped in ranch, or roasted, or steamed, or plain raw; Carrots are delicious.  And a fabulous snack!
• Zucchini- These veggies take on the taste of whatever you cook them in.

          In an earlier post: Tastiest Way To Get Rid Of Zucchini!            I showed you a weird yet delicious recipe for Zucchini Cobbler!  You could also saute them, roast       them, grill them, all sorts of things.  


Again I don't profess to be the healthiest of eaters.  But, this post is just meant or be a kind of reminder that fruits and veggies are good.  And you can do so much with them.  Go and buy more fruits and veggies. :)  I know I will... :D

A Post for Ladies

Sorry about the sudden break in blogging.  I had finals, then I moved back home, and then I had to find a job for the summer.

But I return bearing a really good post. 

Last night, the clinic in my area hosted a "Female Teen/Young Adult" get-together; in order to discuss topic a that every female PKU'er worries about.

PKU Pregnancy

It was actually pretty cool, because it brought people, who weren't following their diets currently, out.  I met several girls who I had never seen before.  (And the PKU community is a rather small one.)

We ate at a restaurant, which was kind enough to cook some low-pro food for us, and we talked.  We talked to woman who had already been pregnant or were currently pregnant and had PKU.  What they said was very reassuring.

It's not as hard as one might think. 

The lady I talked to said, "the hardest part was getting her levels down to a 2 before trying.  After that it's really easy to keep it down, because your tolerance goes up."  

Which makes sense, because suddenly you're feeding two people instead of one.  Some other helpful things she said were: 

"Your formula also goes up, but sometimes if you can't eat it all they'll half it with pills."

 "You have to keep a diet record and do weekly blood draws..."

"When I go see my doctor he doesn't have to do anything different than other pregnancies."

 And finally:

"It's a lot of work, but once your holding that little baby in your arms, it'll all seem worth it." 

It's not impossible.  That is the message I wanted to spread today.  Just a message of relief.  It's hard work; but every pregnancy is.  And if that's what you want... YOU CAN DO IT! 

(And I believe there are blogs of PKU woman who are currently or have been pregnant if you want to see more of the day-to-day stuff.)

        

A REAL Date-killer

Last week I talked about a fake date-killer.  This time I'm going to talk about a REAL one. 

So guys might not care about the salad, but they get really freaked out when you mention your "diet".  Yes, mentioning your diet on a date is a DATE-KILLER. 

When you mention your diet, even if it's offhandedly, one of two things can happen:

1. They never ask you on another date ever again.
2. They ask more questions.

Some guys just can't "handle" a girl who has dietary needs.  I've talked to some people who had guys mention how they could never be with a girl who has a diet like that ON THEIR DATE!!!! 

And when the guy asks more questions about it.  (However kind he may be.)  You can bet that you're going to spend the majority of the date talking about what you can and can't eat.

Date: "Can you have chicken?"

You: "No.  It has a lot of PHE in it."

Date: "How about turkey?"

You: "Same deal... no."

Date: "How about fish?"

You: "Still has a lot of PHE."

Date: "What about water?"

You: "Actually that I can have." (while in you mind you're thinking: Of course I can have water!  You've been watching me drink it for the whole date!) 

It's nice that he's interested.  But while he's busy asking questions about your diet, you lose the chance to get to know each other.  In his head your "the girl with the really complicated diet".

 You could be using the time that you spend trying to explain your diet to find out more interesting things like: what color is his toothbrush?  What's his favorite type of goat?  What's his favorite cartoon?  What is his closet-nerdy habit?  What is his favorite crayon in those big coloring boxes?  Etc...

The funny thing is, even if I know the guy pretty well.  We've been friends for a LONG time, the moment we're in a date setting they suddenly want to know all the gritty detail of my diet.

It's a Date-killer.

So some good advice?  Save discussing you're diet for another day.  Definitely not the first date.  Once you get to know him a little better, and he knows that you're not only your diet.  Because the moment you're diet is mentioned... it becomes the choice topic for a long long long long time. 

    

 

Oh, You're a Salad-Eater?

The other day I was talking with my friends about dates/dating/ guys ... you know.  We were talking about "Date-Killers".  (The things that really make a date awkward or can sometimes even ruin it).

I went home, and later I was still thinking about it.  What are some "Date-Killers"?  And are they real or just a Myth?

Well, when I was 12 years old I was told that one dates you shouldn't order salad or spaghetti because they're really messy.  And on top of being messy, salad makes him think "oh you're one of THOSE girls.  The ones who obsess about their weight and whatnot."

Basically they told me, salad is a Date-killer.

Which for PKU'ers is kind of sad.  Most of the time all we can eat at restaurants IS the salad.  So what do we do?

My first date I decided that I didn't care if my date thought that.  He should already know me well enough to know somewhat about my diet, if he was going to ask me out on a date.  So I ordered a salad.  I order salad a lot on dates, and you know what?  No one cares.  :)

So that Date-Killer has been DE-MYTHED.  Next time I'll talk about a REAL Date-killer, one that I've experienced myself.  Should come with an intriguing story. :)   

(Sorry that this was short.)

Test Day

I love smoothies.  I've mentioned that in a couple posts before.  But I do.  I love smoothies. 

And I ALWAYS make a smoothie for breakfast the morning of a huge test (like the ACT, or an AP Test). 

ALWAYS.

It's a tradition.  I put my medicine and some fruit and some rice milk (or coconut or dairy free, depending on what I have) in a blender and I make it. 

Well, Tuesday I had a HUGE test.  I was taking the PRAXIS.  Which for all those who don't know what that is, it's a test you have to take to be a teacher.  At my college we have to take it in order to get into the teaching program.  Anyways, I was taking the test because I'm going to apply for the teacher's program (which by the way is VERY competitive). 

I was so nervous.  The night before I went to bed at a decent time and just laid there.  I couldn't sleep, and when I finally dozed off I woke up again thinking I was going to be late for the test.  I must've woken up at least 4 times that night.  And the worst part of it was the test was scheduled for 1 pm.  There was no way I was going to sleep in THAT much!!! 

(What does this have to do with smoothies???  I'm getting there.)

The next morning I was SO tired and SO nervous, and I had a piercing migraine.  I don't think I've ever been so nervous for a test before.  I simply didn't have time to make a smoothie for breakfast.  I went to my first two classes smoothie-less and could barely pay attention.

But I learned something very interesting in my 2nd class.  We were talking about endorphins, and what makes it.  And the lecturer (who was a guest speaker that day) said something to the effect of:
"When you do stressed, or nervous, or depressed and you do something you like, or eat something you like, or exercise you're body creates endorphins.  That's what happens when your studying and you suddenly have a comfort food craving."

(Yeah that's the example she used)

Well, I had gone out of my way to collect smoothie items the previous day and I really wanted my smoothie.  So I booked it to my apartment (I had 2 hours until I needed to be at the testing center) and made my smoothie.

It was delicious. :)

But it was kind of funny.  After drinking that smoothie I already felt calmer.  And I still had an hour to get to the test.  So I decided to walk.  It was beautiful weather, and I'm so glad I did.  By the time I reached the test, I was nervous but nowhere near the point I had been that morning.

And the good news is... I survived.  (I won't find out the results for another 11 days.  :-P )

Moral of the story: When your stressed/ depressed/ or extremely nervous, make a smoothie.  Haha.  Okay, make whatever you want.  And exercise.  And do something you like to do.  It helps.  :)

Later Gators!

Wisdom Teeth

My eyes wandered down the list the dentist had given me.

Recommended Foods List:

• Ice Cream
• Smoothies
• Jell-o
• Yogurt
• Mac'n cheese
• Chicken Noodle Soup
• ....

What? 

If you haven't guessed yet, the list was for Post-Wisdom Teeth Surgery. 

Yes, this week I got my Wisdom Teeth removed.

It wasn't too bad.  3 of my 4 Wisdom had grown in already and all they needed to do was pull them out.

But, because of this I was given an extra challenge.  How to stay on the dentist's diet AND the PKU diet?

This week I explored that question.

The top 2 hardest challenges:

1. Remembering to take all the pills AND drink my formula!  I felt like I was constantly taking them all the time.  Or near the end I'd almost forget one or the other.
2. Not being fresh fruits and veggies.  I naturally go and eat a piece of fruit when I'm hungry, so not being able to do that?  It was pretty challenging.  A couple of days ago I made the mistake of eating an orange too soon.  It BURNED!!!

 Here is my revised "Wisdom Teeth Foods"  For the PKU Child:

• Rice Dream Ice Cream
• Sorbet
• Melted Butter/Margarine on PKU bread (to soften it up)
• Smoothies
• Rice (be careful with this one... maybe near the end of recovery)
• Popsicles
• Mashed Potatoes
• And anything else you think might be okay.  Like I said my recovery wasn't that too bad.  It all depends to what you feel up to.  

That was my Spring Break.  Wasn't as bad as it sounds.  I got a lot of time to read and watch movies.  =)  Well enjoy your week!  Be happy!

Happy 2nd Bday!!!

Guess What???

It's my Blog's 2nd Birthday!  

(Well technically it was the 28th of Feb.  But I wasn't able to get on yesterday) 

Hurrah!!!!!!!! 

I never imagined that my blog would amount to much.  At first, it was really for my own sake.  To "help" others yes, but to help me take control of my PKU.  To help me gain interest and responsibility for it. 

Now let's look at some stats for this past year.

Top 5 Posts:

1. Happy PKU Awareness Month (from 2011)- 408 views
2. A PKU Story- 185 views
3. New Favorite Recipe!- 143 views
4. Happy PKU Awareness Day 2012- 74 views
5. Hello to you too!- 66 views 

Top 5 Searches:

1. pku	36
2. pku awareness month	23
3. phenylketonuria	22
4. people with phenylketonuria	15
5. people with pku	10

Top 5 Countries:
 

1. United States	2488
2. Norway	251
3. Russia	194
4. Germany	84
5. Canada	80

I never imagined my blog would be so popular.  Thank you.  All of you.  :)  Especially those who have become "followers"  whenever I see someone on the list that doesn't share the same last name as me, it makes me feel good.  

Special thanks needs to be given to pkuworld.com for putting my blog on your list.  I know that I wouldn't have achieved this much without your referrals.  (Wow... suddenly I feel like I'm giving an Oscars speech or something.)  But anyways thanks everybody!  I never imagined that my blog would live to see 2 years, or that it would keep going after 2 years.  

I have plenty more ideas of blog posts, and I'll see you next time.  Who knows maybe my blog will live to see 3 years?  :)