Better Millk 3-Day Challenge

Today I received a surprise in the mail. A package labeled Cambrooke Foods (which is a PKU food company). Inside it contained: instructions on how I begin the challenge, recipes for the product, a pamphlet labeled The GMP Revolution, and 6 packets of Camino Pro Bettermilk. Bettermilk is a new formula they're promoting. I looked at booth they had at Camp PHEver last summer, and it looked pretty interesting. It's high in good protein but is relatively low in PHE. (1.5 equivalents for each packet) The challenge is to try their product for 3 days, 2 packets a day. But the hard part is I have to use 5 of them in a recipe, then I can drink the last one. After I'm done I fill out a survey for their research. It sounds cool, and I'm eager to get started. Don't know when I'm going to get started but it will be relatively soon. When I drank a sample of the bettermilk it tasted pretty good. The one major downer for me right now is how much PHE allowance it takes up. Don't know what I'm expecting at this point but the recipes look awesome. (They even have one for ice cream... possibly my favorite dessert in the world!) The pictures above are of the box and it's contents. The one on bottom are the packets which are rather large in size, they contain 15g each. I'll post about the results after I complete it. :) And post the recipes along with pictures of how it turned out!!!

The Many Faces of Hungry

Yesterday while mowing the lawn I had sudden inspiration. I had been feeling hungry and my stomach was protesting the wait. When I realized... I wasn't hungry for food! I was hungry for my formula! As I kept mowing I kept thinking about it. I decided that there were 3 different types of hungry.

1. There's when you're really hungry for food. You'll eat anything! Even yourself if you could!

2. There's when your body is hungry for nutrients that it's lacking! (For PKU it's when you are hungry for formula)

3. And then there's when your actually thirsty, but your body feels like it's hungry.

There could be more but these are the ones I came up with.

With other news I thought I'd like to hear what you would like to know. If you leave a question (any question) as a comment I will answer it as truthfully as I can. Only rule: It has to do with PKU in some way. Okay? I know it's a short post... more like a thought to be honest but next week I'll come up with something longer. ;) See you next week!

Phenylalaine Breakdown

I am a swimmer. I am on my school's swim team and I love the water. It's a great way for me to get exercise too. Everyone needs to exercise! It's interesting though because when PKU'ers exercise they can actually break down the Protein (Phenylalanine) faster. That's because your working hard and using energy. The process has to go faster to keep up with the demand. If you exercise constantly then you can actually keep it going at the faster rate. That allows the PKU'er to consume more PHE. So with my swimming, I exercise a lot. In the mornings we have a land workout and after school we swim. I found myself hungry all the time. (Which is normal in every swimmer.) I got boosted from 18 equivalents to 20, and my formula amount rocketed. I needed more vitamins and nutrients. I also needed more PHE to keep up with the process.

Now I have Classic PKU (the most severe kind). To me have that PHE increase opened my eyes to the world of Physical Fitness. Every PKU would like to be able to have a little more PHE. With regular exercise it's possible. There are so many types of exercising out there. You could: Run, swim, dance, play soccer, basketball, football, tennis, do yoga, gymnastics, lift weights, etc. It goes on and on! There is something out there for everyone, all you have to do is find it? How do you find it? You try everything until you find what you want.

I found swimming. Arguably the best sport for your body. It helps my break down system go faster and lowers my PHE level so I can eat more. Any sport can do the same. Besides exercise is fun!

The Formula Wars

I love my formula. It tastes good, it goes well in smoothies, and somewhere out there is a recipe to turn it into ice cream. (If anyone has the recipe for Phenylade vanilla ice cream please share it as a comment please.) But there is one thing I hate about it... I hate adjusting to it when they change its build up. Whenever I see a sticker saying Now With:---------------------- I think. Uh-oh. I've had some pretty rotten experiences with it too. When I was younger I had a different formula non-flavored, it was okay I drank it. I was 9'ish when they changed the flavor completely by adding nutrients. That's when the struggle began. I was small so I didn't really truly understand the importance of Formula and got rid of it however I could. We changed formulas a couple times and i tried a lot of different types. Before I found Phenylade Vanilla. Since then it's changed 2x but I've adjusted to both by forcing myself to drink it for a couple days. After a while I think it tastes even better than the old formula! But those first couple of days are nasty. The last time I mistook the new taste as leftover soap from washing it! (That was Wednesday.) It tastes okay now. I'm used to it. And really it wasn't that drastic of a change as the first time with this formula.

Another change that usually happens with Formula happens every months or so... a new prescription. Because PKU Formula is a nutrient supplement and they want to make sure you get the right amount of everything. It's easier to adjust to, but recently my prescription got changed as well. Now I have 2 packets Phenylade 60, 160 grams Phenylade. It tastes more watery than before, but on the upside I can drink it faster!

Oh another thing about formula. I love putting it and making it into other things such as a smoothie. If anyone has some really good recipes for Phenylade Vanilla just comment them underneath! Thanks!

Camp for All and All for Camp!

Sorry about the procrastination of this post. I was studying my brains out for my AP Psychology test which I took today. Changed the layout again, you may stop reading this for 10 seconds to admire it. ;) 1,2,3,4,5,6,7,8,9,10. Back to reading!

So as the weather is FINALLY (cross your fingers, knock on wood) turning warm my thoughts head back to the idea... hope... dream of a Camp for PKU'ers in Utah. There are several camps all over the US that host kids with PKU for a week full of fun, friends (with PKU), and food that they can eat. Every other year I myself head to Camp PHEver in Texas (Plane tickets are costly.) But it's a load of fun. My personal favorite things:

1. The food- At Camp PHEver they have chefs volunteer to cook our food. It always turns out amazing! They cook foods I didn't even know had a PKU version!!!
   
2. Friends- I have plenty of friends here in Utah. But PKU friends in Utah?? I have one or two I haven't seen for years. When I go to camp I make SO many friends! All my age! It's amazing! Sometimes though it seems as if EVERYONE with PKU moved to Texas though, because that's where the bulk of them live.
3. Fun- At Camp For All (where Camp PHEver is hosted) they go all out. High ropes course, horseback riding, dances, cook offs, the works. It's so much fun to go to an actual camp, and do what other kids do at summer camp without having to worry constantly about food.
   

Now I love Camp PHEver but... I have a dream that someday Utah will have it's own "Camp PHEver" with a different name of course. But the idea being the same: make friends, learn about your diet, have a load of fun. Having a Camp in Utah would benefit the several states that come to our clinic as well as other Western States! (Now I'm sounding like a persuasive essay.) Think of it: a nice cabin campsite in the sunshine next to real mountains. Utah is an IDEAL spot for a camp. Roasting Marshmallows, playing games, having cook offs... sounds like a perfect camping trip to me.

The Drama of Blood Tests

Every month PKU'ers are supposed to get a blood test done. It's unpleasant but it needs to get done. There are 2 ways to do this. Finger pricks or Arm shots. Which one is better? For me I prefer Arm shots. I don't bleed in my fingers, and usually it takes multiple pricks to fill the 2 circles they told us is bare minimum. Then it turns out the sample was soiled in some way... every time. So I prefer a clean blood shot in the arm.

This is abnormal. According to my new doctor every PKU'er in the clinic does finger pricks, so why can't I? For several days I have been thinking about this. With the new lancets they have all you need to do is place it in the right position and push in. A little needle comes and goes; you hardly even see it. In my daydreams and nightmares it's a stabbing motion. Can I really stab myself? Even if it's in the finger?

I know that finger pricks are a ton cheaper. I can do them at home. But... if the sample is spoiled then I have really sore fingers for nothing.

The doctor's at my clinic are trying to force me to finger prick myself. There is no way to avoid it anymore. At this stage of life I need to have consistent tests taken because my brain is growing right now. If I don't I will get brain damage. I simply have too many plans in life to get brain damage. So I will try to do it even if it means: having sore fingers continually. It's going to be hard to get over my fears. I realize I do fear those lancets they have right now but we all need to do things we don't want to do. Even when they can cause a lot of pain.

I don't mean to sound self-righteous or heroic. I feel very the opposite. It's just one piece of the baggage that comes with PKU... one I've been avoiding for a long time. It's time to get over my fears and prick myself... and prick myself... and prick myself. Hopefully I'll get a clean sample someday.

New Favorite Recipe!

I just got back from a friend's house and soon I need to unpack, then repack. At noon I'll be off again. But before I go at my friend's house we tried this really good recipe that turned out great. It's pretty easy, so here we go:

Ingredients:

• Sliced veggies (we used potatoes, asparagus, sweet potatoes, onions,and other random veggies)
• A pan
• Pam/ or some other nonstick spray
• 1/8 cup olive oil
• Garlic Salt
• Salt
• Non salt seasoning

What you do:

1. Preheat the oven to 400 degrees
   
2. Spray the nonstick spray on the pan/sheet
3. Lay out the veggies
4. Drizzle the olive oil over the veggies
5. Then season it (use very little salt, the garlic salt should take care of it.)
6. Cook it in the oven until all the veggies are soft (about 10 minutes... sorry if I'm off)

That's it!

The fun thing about the friend I stayed with is that she's vegetarian. When I stay at her house it's not just "potatoes and salad" no we eat a variety of foods. It's nice that her family tried to learn what I could and couldn't have. But it's also good if you know it yourself. Well I better go do what I'm supposed to be doing... :) I'll see you next week!