It has been a while since I have updated you all. I'm sorry for that. This last month has been completely CRAZY!! There was a trip to Texas for a wedding, that trip lasted a week. I helped at my church for Vacation Bible School, I went to Teen church camp for a few days, my father's birthday party along with my grandparents anniversary party. Like I said, this has been a very busy month.
Even though this has been a very busy time, I still cannot get baby off my brain. I guess I have come to the point in my life where I think I'm ready. It doesn't matter how much I want to become a mommy right now, I can't because I have to get my diet on track first. I am so close to be getting my levels right!!
I do feel a bit discouraged though. I recently joined a group on Facebook for women with PKU who want to be, who are, and who have been pregnant. I look on the page and I see women who say they are going back on their "precon," or preconception diet. When they say that, they also share their current levels, usually really close to mine. A week or two later, they post saying that their levels have gone down dramatically and are on track to getting pregnant. Me, however, I have been working on my levels since the end of January.
I know it's an ongoing process and it's easier for some people. I just wish it was that easy for me.
Until Next time,
Phe
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Tuesday, August 7, 2012
Monday, June 25, 2012
Cheating
Have you ever wanted to lose a few pounds? Well, if you have you started a diet. You watch what you eat, count calories, cut out carbs, or something else. It gets stressful and sometimes you want to cheat on your diet. It's normal right?
Everyone on any kind of diet has the temptation to cheat. It's the same situation with someone with PKU. Someone on a regular diet just has to stay on their diet longer, that's the only consequence they get. People on the PKU diet have quite a few consequences, and sometimes we aren't the only ones who get punished.
I can't speak for everyone with PKU when it comes to the symptoms we get. I know when I have had too much protein I dont get any symptoms until the next day. I get VERY moody, I get so tired from doing nothing at all, and I just feel foggy. Like I said, everyone has different symptoms.
Some people get cravings for certain things. I know of someone who craves a Whopper from Burger King. Other people crave peanuts. I know I crave Velveeta Mac & Cheese. Weird huh?
Anyways, that's a ll I have for you now.
Unitl next time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Everyone on any kind of diet has the temptation to cheat. It's the same situation with someone with PKU. Someone on a regular diet just has to stay on their diet longer, that's the only consequence they get. People on the PKU diet have quite a few consequences, and sometimes we aren't the only ones who get punished.
I can't speak for everyone with PKU when it comes to the symptoms we get. I know when I have had too much protein I dont get any symptoms until the next day. I get VERY moody, I get so tired from doing nothing at all, and I just feel foggy. Like I said, everyone has different symptoms.
Some people get cravings for certain things. I know of someone who craves a Whopper from Burger King. Other people crave peanuts. I know I crave Velveeta Mac & Cheese. Weird huh?
Anyways, that's a ll I have for you now.
Unitl next time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Tuesday, June 12, 2012
Only Human
Sometimes in life, people get so determined to do something that when they slip up they are very angry with themselves. It's that way with many to all goals people set for themselves. It's no different for people with PKU.
Just because people with PKU aren't supposed to have a certain type, like bacon, doesn't mean we haven't tried it. Well for some people, it instantly becomes their favorite food. Well, when your favorite food is something you are not supposed to have it makes it harder to stay away from. It's like a dog. Dogs love chocolate, even though they aren't supposed to have it.
Now, I know it is hard to resist high protein foods when they happen to be your favorite. It becomes easier to slip up. We have to realize that we are only human. We will make mistakes, just like everyone else. It's easy to get mad at yourselves for your mistakes, but that isn't going to make them go away. You just have to jump back up and face it again. Everything makes you stronger.
This is mostly to help myself. I have been facing this a lot lately. Not being on the low protein diet made it easy for high protein foods to become my favorite. Because of that I have been finding it hard to stay away from temptations of the high protein foods.
Just remember to stay positive.
Until Next Time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Just because people with PKU aren't supposed to have a certain type, like bacon, doesn't mean we haven't tried it. Well for some people, it instantly becomes their favorite food. Well, when your favorite food is something you are not supposed to have it makes it harder to stay away from. It's like a dog. Dogs love chocolate, even though they aren't supposed to have it.
Now, I know it is hard to resist high protein foods when they happen to be your favorite. It becomes easier to slip up. We have to realize that we are only human. We will make mistakes, just like everyone else. It's easy to get mad at yourselves for your mistakes, but that isn't going to make them go away. You just have to jump back up and face it again. Everything makes you stronger.
This is mostly to help myself. I have been facing this a lot lately. Not being on the low protein diet made it easy for high protein foods to become my favorite. Because of that I have been finding it hard to stay away from temptations of the high protein foods.
Just remember to stay positive.
Until Next Time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Friday, June 1, 2012
Day By Day
I want to thank you all for supporting me, whether it's by following the page and reading my posts, commenting on the Facebook page, or being here for me in my daily life. I have a wonderful support system that includes my family, my friends, my doctors, and many more. I never realized how many people read my blog. I have people at work talking to me about it, my hair dresser, random people adding me on Facebook because they have questions or comments about the blog. It's really nice to see everyone getting something from this page.
Well, make sure the support continues, not just for me, but for anyone else you know who has PKU. There could be things that they are struggling with that they can't explain. PKU doesn't just affect what we can eat, it effects a lot of things in life. Too much protein causes mood changes that we can't explain. I know I have said this before, but I keep saying it because it is important to remember. Sometimes I am extremely grumpy with my husband, he hasn't done anything to upset me. No matter how hard I try, I can't contain it.
It's not only mood changes that PKU effects. There have been many studies to prove that PKU patients with a high protein level have a decreased IQ. This, by no means, means that someone with PKU is "slow" or dumb. It just means that their IQ isn't as high as it could be.
Another thing, something I hadn't shared with anyone until recently. PKU, also, effects the memory. Now, that could mean plenty of things. Some people have a hard time remembering what was said in a conversation the other day, or what they were talking about in the middle of speaking. Others have a hard time remembering a lot bigger things. For example, I don't remember a lot of things from growing up. I can't always bring them to recollection, so if someone is talking about a situation that I don't remember, I just agree with them. I'm too prideful and embarrassed to voice some of my problems. Sometimes it's hard to remember appointments, dates, what day of the week it is. I don't mean just for a moment. I mean it could take a while to remember, some have to look at calenders and planners to make sure.
I know I don't want to be treated differently because of these things, that is why I have never wanted to tell anyone about some of the struggles that comes along with PKU. Through all this, I want people with PKU to know that this is normal, but you should still talk to your doctor about it because it can be helped. I want to make those who know someone with PKU are aware of some of the things we struggle with.
That's all for now.
Until Next Time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Well, make sure the support continues, not just for me, but for anyone else you know who has PKU. There could be things that they are struggling with that they can't explain. PKU doesn't just affect what we can eat, it effects a lot of things in life. Too much protein causes mood changes that we can't explain. I know I have said this before, but I keep saying it because it is important to remember. Sometimes I am extremely grumpy with my husband, he hasn't done anything to upset me. No matter how hard I try, I can't contain it.
It's not only mood changes that PKU effects. There have been many studies to prove that PKU patients with a high protein level have a decreased IQ. This, by no means, means that someone with PKU is "slow" or dumb. It just means that their IQ isn't as high as it could be.
Another thing, something I hadn't shared with anyone until recently. PKU, also, effects the memory. Now, that could mean plenty of things. Some people have a hard time remembering what was said in a conversation the other day, or what they were talking about in the middle of speaking. Others have a hard time remembering a lot bigger things. For example, I don't remember a lot of things from growing up. I can't always bring them to recollection, so if someone is talking about a situation that I don't remember, I just agree with them. I'm too prideful and embarrassed to voice some of my problems. Sometimes it's hard to remember appointments, dates, what day of the week it is. I don't mean just for a moment. I mean it could take a while to remember, some have to look at calenders and planners to make sure.
I know I don't want to be treated differently because of these things, that is why I have never wanted to tell anyone about some of the struggles that comes along with PKU. Through all this, I want people with PKU to know that this is normal, but you should still talk to your doctor about it because it can be helped. I want to make those who know someone with PKU are aware of some of the things we struggle with.
That's all for now.
Until Next Time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Tuesday, May 29, 2012
A Little Update on Me
In some of my posts, I have mentioned that I am trying to go back on the PKU diet. I have been struggling a lot lately, especially with my small amounts of protein and drinking my formula consistently. I have always struggled with keeping my protein levels down, even when I was younger and on the diet. It's no different now.
I recently got a package in the mail, opened it, and discovered my formula! I was really excited to finally have it. I opened it, mixed some up, and drank it. I soon realized the taste had not changed. I can get past a gross taste as long as it doesn't smell gross, too. Thank goodness it smells like real strawberries. :) I still feel sick to my stomach for about 20 minutes after I drink my formula. I am not really sure why that is, but I can live through that as well. The only thing I have really been having trouble with is keeping my natural protein to a minimum. For so long I have had free reign on anything I wanted to eat. I never counted how much protein was in anything... Well, since going back on the diet means limiting my protein, I count it now.
I am only allotted 12 grams of protein a day. That isn't much considering how much protein is in vegetables even.
Potatoes : 2.1 Grams of protein
Broccoli : 4.2 grams
Banana : 1.2 grams
Orange : 1.1 grams
Spinach : 2.8 grams
Brussels Sprouts : 3 grams
Cauliflower : 3 grams
Sweet Onion : 2 grams
You get the point. I have to eat very carefully in order to not go over my daily amount. It's challenging to keep track and still eat right. I'm always looking for recipes for meals that have a very small amount of protein. They are out there... Most of them I have already tried and am getting tired of. I'm trying more and more recipes from my old PKU cookbook. I haven't tried too many but I will let you know when I have found some good ones.
Anyways, here is another recipe from my personal PKU cookbook.
I recently got a package in the mail, opened it, and discovered my formula! I was really excited to finally have it. I opened it, mixed some up, and drank it. I soon realized the taste had not changed. I can get past a gross taste as long as it doesn't smell gross, too. Thank goodness it smells like real strawberries. :) I still feel sick to my stomach for about 20 minutes after I drink my formula. I am not really sure why that is, but I can live through that as well. The only thing I have really been having trouble with is keeping my natural protein to a minimum. For so long I have had free reign on anything I wanted to eat. I never counted how much protein was in anything... Well, since going back on the diet means limiting my protein, I count it now.
I am only allotted 12 grams of protein a day. That isn't much considering how much protein is in vegetables even.
Potatoes : 2.1 Grams of protein
Broccoli : 4.2 grams
Banana : 1.2 grams
Orange : 1.1 grams
Spinach : 2.8 grams
Brussels Sprouts : 3 grams
Cauliflower : 3 grams
Sweet Onion : 2 grams
You get the point. I have to eat very carefully in order to not go over my daily amount. It's challenging to keep track and still eat right. I'm always looking for recipes for meals that have a very small amount of protein. They are out there... Most of them I have already tried and am getting tired of. I'm trying more and more recipes from my old PKU cookbook. I haven't tried too many but I will let you know when I have found some good ones.
Anyways, here is another recipe from my personal PKU cookbook.
Vegetable Pot Pie
(Dough Recipe Below)
Basic Vegetable Mixture:
1 cup diced potatoes
1 cup diced or sliced carrots
1/4 cup chopped onion
Vegetable Option 1
1 cup quartered fresh mushrooms or 1/2 cup sliced canned mushrooms
2 tablespoons frozen peas
Vegetable Option 2
1 cup fresh or frozen cut green beans
1/3 cup chopped celery
Gravy
2 Tablespoons cornstarch
1 pkg G. Washington's golden seasoning and Broth, or seasoning of your choice
1 3/4 cups water
Prepare pastry and set aside. Prepare vegetables from Basic Vegetable Mixture, then prepare vegetables from either of the two vegetable options. As all vegetables are prepared, dividing equally among 8 individual casserole dishes. Sprinkle with salt and pepper as desired.
To prepare Gravy, in a small saucepan mix cornstarch and broth powder. Add a few tablespoons of water and mix to a paste, then add remainder of water; bring to a boil, stirring constantly until thickened. Pour 3 tablespoons of gravy over vegetables in each casserole, just enough to cover vegetables. Cut pastry into rounds to fit casserole dish; place a round of pastry on each pie. Bake at 400 degrees for 12 to 15 minutes.
Yields: 8 Pot pies
Storage Tip:
Pot pies freeze well, either baked or unbaked. Thaw and reheat in microwave oven, or bake as directed.
Phenylalanine (mg) Protein (gm) Calories
Using Option 1
Per recipe 309 8.6 231
Per Pie 39 1.1 29
(not including crust)
Using Option 2 294 7.3 226
Per Pie 37 0.9 28 (not including crust)
Pot Pie Dough
1 1/2 cups Wheat Starch
1/2 teaspoon salt
1/2 cup Butter flavored Crisco
1 tablespoon water
2 1/2 tablespoons light Karo corn syrup
Combine wheat starch and salt in a mixing bowl. Cut in shortening with a pastry blender, fork, or 2 knives, until mixture resembles coarse bread crumbs; sprinkle water over and blend with a fork. Dribble syrup over and continue mixing with a fork. Dough will be moist. Gather dough into a ball, adding wheat starch to your hands if sticky. toll out onto surface dusted with wheat starch, or pat out into desired shape.
Makes enough dough for one of the following:
10 pot pies
8 small turnovers
4 large turnovers
four 4-inch diameter pie pans
Phenylalanine (mg) Protein (gm) Calories
Per recipe 29 0.5 1696
Per pot pie 3 - 170
Per small turnover 4 0.1 212
Per large turnover
or 4-inch pie pan 7 0.1 424
I hope you enjoy that!
Until Next Time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Saturday, May 12, 2012
In Need of Cooperation!
I know it has been a while since we have talked! I have had a somewhat crazy schedule lately. On top of being busy, I am still waiting for my order of formula to get here. I'm not a very patient person to begin with... but let me tell you, my body isn't very patient either. Have you ever had those times when you were SO tired you wanted to fall asleep, but you still had things to get done? That has become an everyday thing with me lately.
When I last saw my Metabolic Specialist, I have been consuming 12 grams of protein a day. That is what Dr. Huntington thought my body needs in order to kick it into gear. I have no problem with that. I mean, sure, it's challenging at times, but considering I went from eating close to whatever I want to eating 12 grams of protein a day, I'd say I am doing pretty well.
Anyways, that's not the point. A woman my age should be consuming 46 grams of protein a day. But since I have PKU and my body can't break down that much protein very well, I need some help from medical protein. I get my medical protein from a drink that is most known as, formula. Like I said, I have no problem cutting myself down to 12 grams of protein a day, but I haven't received my order of formula, yet. Therefore, I run out of energy quickly, and get sleepy.
With only taking in a little amount of protein, my body likes to tell me I'm hungry. When I don't eat protein right away, I get sleepy. It is now to the point where, I wake up in the morning, take a shower, get dressed and ready for the day then I'm ready for a nap. My body has gone into panic mode, it thinks I am starving myself, even though I'm not. So, I tend to take a nap everyday that I can squeeze one in.
I'm so excited to get my formula, so I can stop feeling so tired and hungry all the time, and not have to worry about when I can fit in a nap.
PKU Friendly Monkey Bread
2 T sugar
1 ½ t cinnamon
3 ½ C Mixquick
1/3 C coffee rich
1/3 C water
2 T sugar
2 T margarine
1 t vanilla
1 t egg replacer, mixed w/ 2 T water (enough egg replacer and water to equal 1 egg)
Heat oven to 375. Spray a 9x5x3 loaf pan. Mix 2 T sugar and the cinnamon. Stir remaining ingredients until soft dough forms. Pinch off 1 ½ inch pieces of dough; roll into cinnamon sugar mixture and place in pan. Bake 20 – 25 minutes or until golden. Let stand in pan about 10 minutes and remove to wire rack. Drizzle with glaze and cut into slices. Serve warm or rewarmed in microwave.
Powered Sugar Glaze
½ C powdered sugar
2 -3 t water
Yield: 12 slices
Phe per recipe: app. 19mg
Phe per slice: app 2mg
Thanks for reading!!
Until Next Time,
PHE
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
When I last saw my Metabolic Specialist, I have been consuming 12 grams of protein a day. That is what Dr. Huntington thought my body needs in order to kick it into gear. I have no problem with that. I mean, sure, it's challenging at times, but considering I went from eating close to whatever I want to eating 12 grams of protein a day, I'd say I am doing pretty well.
Anyways, that's not the point. A woman my age should be consuming 46 grams of protein a day. But since I have PKU and my body can't break down that much protein very well, I need some help from medical protein. I get my medical protein from a drink that is most known as, formula. Like I said, I have no problem cutting myself down to 12 grams of protein a day, but I haven't received my order of formula, yet. Therefore, I run out of energy quickly, and get sleepy.
With only taking in a little amount of protein, my body likes to tell me I'm hungry. When I don't eat protein right away, I get sleepy. It is now to the point where, I wake up in the morning, take a shower, get dressed and ready for the day then I'm ready for a nap. My body has gone into panic mode, it thinks I am starving myself, even though I'm not. So, I tend to take a nap everyday that I can squeeze one in.
I'm so excited to get my formula, so I can stop feeling so tired and hungry all the time, and not have to worry about when I can fit in a nap.
PKU Friendly Monkey Bread
2 T sugar
1 ½ t cinnamon
3 ½ C Mixquick
1/3 C coffee rich
1/3 C water
2 T sugar
2 T margarine
1 t vanilla
1 t egg replacer, mixed w/ 2 T water (enough egg replacer and water to equal 1 egg)
Heat oven to 375. Spray a 9x5x3 loaf pan. Mix 2 T sugar and the cinnamon. Stir remaining ingredients until soft dough forms. Pinch off 1 ½ inch pieces of dough; roll into cinnamon sugar mixture and place in pan. Bake 20 – 25 minutes or until golden. Let stand in pan about 10 minutes and remove to wire rack. Drizzle with glaze and cut into slices. Serve warm or rewarmed in microwave.
Powered Sugar Glaze
½ C powdered sugar
2 -3 t water
Yield: 12 slices
Phe per recipe: app. 19mg
Phe per slice: app 2mg
Thanks for reading!!
Until Next Time,
PHE
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Friday, April 20, 2012
History Lesson!
Something a lot of people have asked me is, "When was PKU discovered?" "Is it a newly found condition?" So I have found some history on PKU for everyone. Get on your glasses and get ready to learn. :)
1951 First Supplement-
In 1951, a German professor, Horst Bickel, developed the first PKU formula. The unflavored protein drink provided many amino acids without Phe. For the first time, PKU patients could get most of the nutrition they needed while keeping Phe levels low.
1958 Simple Test Developed-
Robert Guthrie developed a way to test for high Phe in newborns using a drop of blood. The test was fast, simple and inexpensive, unlike earlier tests.
1966 PKU Newborn Screening-
In 1966, hospitals across the country started using the Guthrie test to screen all infants for PKU. By identifying newborns with PKU at birth and managing care from the beginning, mental retardation could at last be avoided.
2007 First Drug Therapy for PKU-
KUVAN Tablets became the first drug approved for PKU
There is a little history for you.
Until Next Time,
Phe
P.S. Now is the time of year that the March For Dimes is happening!! Nationwide there are walks being coordinated to provide medical help to babies born premature!! Learn more and Donate Now!!
http://www.marchforbabies.org/personal_page.asp?pp=4364044&ct=4&w=5545908&u=LauraRG
Follow Me on Facebook: http://www.facebook.com/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
If you ever have any question you can email me! lauragoode@hotmail.com
1934 PKU Discovered-
PKU was discovered in 1934, when a doctor in Norway, named Asbjorn Folling, noticed that several mentally retarded patients had a strange odor. He figured out that it was from something called "phenylacetic acid."
The patients' urine also had a very high level of a chemical called
"phenylketone." That is how the disease got its name, phenylketon-uria.
1950 The Child Who Never Grew-
Pearl Buck, best known for her Pulitzer-Prize winning The Good Earth,
delighted in the birth of her daughter Carol in 1920, and was
heartbroken when she failed to develop normally. Buck was unable to
discover what was wrong with Carol, who grew up mentally retarded as a
result of PKU. She published The Child Who Never Grew in 1950 with the hope that her experience could help others1951 First Supplement-
In 1951, a German professor, Horst Bickel, developed the first PKU formula. The unflavored protein drink provided many amino acids without Phe. For the first time, PKU patients could get most of the nutrition they needed while keeping Phe levels low.
1958 Simple Test Developed-
Robert Guthrie developed a way to test for high Phe in newborns using a drop of blood. The test was fast, simple and inexpensive, unlike earlier tests.
1966 PKU Newborn Screening-
In 1966, hospitals across the country started using the Guthrie test to screen all infants for PKU. By identifying newborns with PKU at birth and managing care from the beginning, mental retardation could at last be avoided.
2007 First Drug Therapy for PKU-
KUVAN Tablets became the first drug approved for PKU
There is a little history for you.
Until Next Time,
Phe
P.S. Now is the time of year that the March For Dimes is happening!! Nationwide there are walks being coordinated to provide medical help to babies born premature!! Learn more and Donate Now!!
http://www.marchforbabies.org/personal_page.asp?pp=4364044&ct=4&w=5545908&u=LauraRG
Follow Me on Facebook: http://www.facebook.com/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
If you ever have any question you can email me! lauragoode@hotmail.com
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