How Do I Look?

In today's society, there is a definite image that is considered "beautiful." If you look at celebrities, most if not all have tan skin with beautiful hair and eyes. You rarely see one with pale white skin, blond hair, and blue eyes. But someone with PKU has exactly that.

As I have stated in previous posts, people with PKU can't have phenylalanine. Well, phenylalanine is a big part in the ingredients of pigment. So without pigment, people with PKU mostly have blond hair, blue eyes, and pale white skin.

Nowadays, you can change almost anything about yourself. So of course, we have the option to dye our hair. Someone with PKU can do that, but most dyes won't last long in our hair. We have the option to go tanning, but the tan won't last long at all, if it even works. I don't know who would want to change their eye color, but there is colored contacts for that.

As for me, I have a very mild case of PKU which means my body makes a little amount of pigment. So I have brown hair, blue eyes, and pale white skin. I don't mind, that's how God made me. :)

I am thankful for what God gave me and how He made me. Just remember not to take for granted your skin or hair colors. Someone else would love to have them and can't get them. :)

Until next time,
Phe

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Phe_ThePKUGirl

A Little Update

So, a few posts ago I told you about the medication, Kuvan. I want to know more about it and see if I would be a good candidate for it. The only way to do that is to see my Metabolic Specialist. The only problem was that it had been 4 to 5 years since I saw her. I didn't remember her phone number or her name ( my mom did all that for me).

Well, it took me a while but I found her name and her phone number. I called and I now have an appointment in February 7th. I am very nervous. She has always been a harsh lady, doesn't sugar coat ANYTHING. I'm hoping I remember her wrong. But if not I know she is going to chew me out for going off diet. But I know I that I deserve a good talking to.

Anyways, that is my update.

Until next time,
Phe

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Phe_ThePKUGirl

Homemade

When you are running late for work and you don't have time for breakfast what do you do? Some people stop at McDonald's or another fast food restaurant. When you get home from a long busy day at work and you don't want to cook what do you do? Some people go out to dinner. That's not so easy for someone with PKU.

Have you ever went to a restaurant and tried to order something with no meat and low protein. Trust me it doesn't leave much on the menu to choose from. Every Sunday night after church my husband's family and some people from the church go to McDonald's for some food and time to fellowship. Everyone gets some sort of meat. As for me it's the same thing every time, french fries and a fruit and walnut salad (I don't eat walnuts).

McDonald's
http://www.mcdonalds.com/us/en/full_menu_explorer.html
Look through the menu and find 8 things someone with PKU can order without having to alter anything. (Not including drinks or desserts)

Burger King
http://www.bk.com/en/us/menu-nutrition/full-menu.html
They have even less to offer than McDonald's.

Wendy's
http://wendys.com/food/Menu.jsp
Not much here either.

Taco Bell
http://www.tacobell.com/food/tacos
Slightly more than the others.

Some people think fast food shouldn't be eaten anyways no matter what kind a hurry you are in. Well, let's take a look at some sit down resturants.

Olive Garden
http://www.olivegarden.com/Menu/Specials/

Red Robin
http://www.redrobin.com/food/

Applebee's
http://www.applebees.com/


Ok, you get the point. It's very hard to go to a restaurant that has a wide variety of low protein foods. I would rather be safe than sorry and make things at home so I know what goes into my food. Next time you go out to eat count the items on the menu and see how many things can be ordered by someone with PKU.

Until next time,
Phe

Tis The Season

As we all know, it is flu season. We are all aware of the extra precautions to take in order to stay away from the tissues, cough medicine and all that yucky stuff. Well, normally, you would just wash your hands a lot more than normal and take extra vitamin C. It's a little more complicated for someone with PKU.

It's much harder to stay feeling healthy when you have PKU. Not only do you have to wash your hands regularly and take vitamin C, but you also have to take zinc. Protein has zinc (of course) and that's what helps your immune system stay healthy. You also have to make sure to eat right and follow the diet as closely as possible to make sure you are feeling healthy to begin with. If you aren't feeling well in the first place due to high protein levels, then the flu will knock you out.

I already had the flu this year and it was not fun. I had a flu shot, so luckily I didn't get it as bad as I could have. Like I have mentioned before, I have not been following the low protein diet closely in just over 4 years. So, I was hit hard with the flu this year. I am so glad I had gotten the flu shot, or I would have been in trouble.

It sounds really easy to stay on top of PKU. But there are a lot of things that you have to do and it takes a lot of money. The medication I mentioned in my last post, Kuvan, on average it costs $57,000 a year and for the maximum dose, $200,000 a year. You also have to take into consideration the traveling costs to see all your doctors. In my case, I have to drive 4 hours or 220 miles.

Not only is it the medications and the formulas expensive, but you have to think of the grocery bill. Someone with PKU eats very often. We can't have much protein, and protein is what makes someone feel full and stay full. Someone with PKU eats more often and more because we never actually feel full. So, it's only reasonable you have to buy more food. Well, that adds up.

Anyways, stay healthy everyone!!

Until next time,
Phe

A New Medication!

There is a medication for everything now days. All you have to do is go to your doctor and tell him or her what your symptoms. Well until now, I couldn't do that with my PKU. I was doing a little research and I found there is a medication to help make my life a little easier.

I was looking for a topic to write about tonight when I stumbled across a page that talked about a prescription. It's a medicine called, KUVAN. It acts with an enzyme in your body to reduce blood Phe levels. It would in a sense take the place of formula, but in a different way. Formula gives me the protein I need when it's already broken down. This medication would make it so I didn't need my formula. It would break down the protein for me.

I just found out about this medication threw my research. I haven't seen my doctor (for PKU) in almost 4 years. Guess it's time to make an appointment!! I will let you know how it goes!!

Until next time,
Phe

Something Fast...

It's been a rough few months for my husband and me. We moved 165 miles away from where we were living with less than a weeks notice. My husband's job went south (they wanted us to move over 1000 miles away than where we were with 2 weeks notice or find a different job). So, we found a different job. With moving with such short notice we didn't have a place to stay. My grandparents generously offered their travel trailer for us to stay in until we found a place.

It's not so easy to cook in a travel trailer, as you can imagine. So, we have been improvising. We both work and have to take lunches to work. It only takes a little while to get sick of sandwiches. So we started buying frozen meals, like TV dinners. Have you ever looked to see how much protein is in some of those??? I never thought to look (that was dumb of me).

I started not to feel so good and I couldn't figure it out. I was going grocery shopping when I decided to look at the protein content in everything. Well, most of the things I was buying had about just as much protein as I thought... that was until I got into the frozen food section.

Marie Callender's
Smokey Cheddar Mac                                15grams
Stuffed Pasta Medley                                  21 grams
Fettuccine Alfredo with Garlic Bread           24 grams
Pasta Al Dente Rigatoni Marinara Classico  19 grams 




I mean it makes sense why there is so much protein. It is a MEAL! I guess I didn't think about it. There aren't many frozen meals that people with PKU can have (without meat). But I guess, there is no such thing as a "fast meal."

Until next time,
Phe

It's Been Awhile!

Man, it seems like it has been forever since I have posted. I have been quite the busy bee lately. I got a new job that has kept me busy, plus looking for a new place, and of course taking care of my husband and the dog. It sure doesn't seem like much in comparison to the things some of you have to do on a daily basis, but it's a lot for me. Especially, since I went from taking care of the dog and my husband and nothing else.

Well, now that Thanksgiving has come and gone I want to share some of the things that I am thankful for this year. First of all, I am thankful for my wonderful husband who works so hard to take care of me and make sure I am happy and comfortable. Of course, I am thankful for all of my family. They are all so wonderful.

I am, also, thankful for my church and salvation. I don't know about everyone who reads this, but I know I wouldn't be here today if it weren't for God's grace and mercy. I am thankful for the country I live in. It has the technology to detect and diagnose things like PKU that can be treated. I am thankful for so much more, but I don't want to take the time and list them all.

I hope you all had a wonderful Thanksgiving and are looking forward to Christmas as much as I am. Only 21 short days until Christmas.

Until next time,
Phe