Happy Halloween!!!
I'm sure a lot of you are wondering: What do I do about Halloween?
Well, back in the days when I still Trick-or-Treated my mom had established a simple system.
She would buy the kind of candy that was low-protein. Basically hard candy. That would be the candy she would hand out. (Although based on the number of kids in our area, I'm sure she had a bag of it stashed away as well.)
My sister and I would go trick-or-treating. We'd always pick the candy we could have, and liked. But if that particular house didn't have that candy, I'd choose something I knew my mom or dad liked. (Later that extended to my little brother or friends as well.)
Then, very ceremoniously, my sister and I would dump our goodies on the floor and go through it with our parents. That was for 2 reasons: to make sure the candy was safe (as in not poisoned), and to sort out the candy we couldn't have.
Note: I have classic PKU, and so does my sister. However, we were allowed chocolate growing up. In fact, I didn't even consider the fact that some PKU'ers considered chocolate as a "no-food" until just recently. It is high, in phe. We'd just control ourselves on the amount.
So, the candy was sorted. Then my mom would trade us candy. For each piece of candy we couldn't have, she'd trade us one of the lower phe candies she had bought. That way, we'd have just as much candy as before... without it being stuff we couldn't have.
But, we didn't leave it at that. Because, nobody wants their kids vibrating from sugar overdose for the next two weeks. And because we were allowed chocolate. My mom kept the Halloween bags. She had a 3 pieces a day rule. And only one of them could be chocolate. :)
If was fine. In fact, it was great! I had no qualms about any of it. Eventually it became a game with my sister and me to see if we could make our Halloween candy last until Easter. haha.
That's just what we did.
Now, I've been seeing a lot of people freaking out about being "gluten-free", "nut-free", "dairy-free"... all sorts of stuff. To the point that they are giving out carrots or key rings. And, their kids, aren't even the ones that need to be any of those things.
I appreciate the consideration. I do. The gesture is kind.
But, I don't want anyone stressing over a problem that isn't theirs. (It's not even that bad of a problem.) We can figure it out. And we will. We're intelligent beings.
I know there are other allergies out there, a lot worse than PKU.
But, I still stand by what I said. If it's not your problem why worry? If you're worrying so hard that you end up giving key chains away, then you're worrying too hard.
We can handle it. Stop worrying. Enjoy Halloween. It's a Holiday after all. :)
Wednesday, October 29, 2014
Tuesday, October 21, 2014
Recipes Galore!!!
Last week, I talked about PKU Adults; and I showed you a great resource for PKU Adults.
This week, I'm going to be talking about a different website/resource that I have found. (The past couple months these resources have been popping up everywhere.)
I'm sure (at the PKU families are aware) of a company called Nutria. They sell PKU friendly foods (and formula). Anyways, they have a website called: medicalfood.com
They sell PKU friendly foods there (of course) because that is what their company is about.
But, they also have a "Learning Center"so you can learn more about PKU. I'm all about educating yourself if you know someone with PKU. The more education the better!!!
They also have (this is my favorite part) Recipes and Meal Ideas. Maybe the title is misleading, because they don't have a huge amount of recipes... but they have a good amount.
I'm a part of their "Recipe of the Month Club". They basically email you a recipe every month. It's free, and the recipes look delicious. I'll admit I have yet to try any, but someday... right?
So far I've been email a recipe for Cheese Biscuits, Jack-O-Lantern Cupcakes, and a couple others. But there are recipes just waiting to be tried on the website itself as well.
It's really cool.
Oh boy, I just realized that if I keep showing you guys the resources I use, you'll just go straight to the source and less to my blog...
Maybe I should keep my secrets. ;)
Or maybe not. Anyways, enjoy! And come back!
This week, I'm going to be talking about a different website/resource that I have found. (The past couple months these resources have been popping up everywhere.)
I'm sure (at the PKU families are aware) of a company called Nutria. They sell PKU friendly foods (and formula). Anyways, they have a website called: medicalfood.com
They sell PKU friendly foods there (of course) because that is what their company is about.
But, they also have a "Learning Center"so you can learn more about PKU. I'm all about educating yourself if you know someone with PKU. The more education the better!!!
They also have (this is my favorite part) Recipes and Meal Ideas. Maybe the title is misleading, because they don't have a huge amount of recipes... but they have a good amount.
I'm a part of their "Recipe of the Month Club". They basically email you a recipe every month. It's free, and the recipes look delicious. I'll admit I have yet to try any, but someday... right?
So far I've been email a recipe for Cheese Biscuits, Jack-O-Lantern Cupcakes, and a couple others. But there are recipes just waiting to be tried on the website itself as well.
It's really cool.
Oh boy, I just realized that if I keep showing you guys the resources I use, you'll just go straight to the source and less to my blog...
Maybe I should keep my secrets. ;)
Or maybe not. Anyways, enjoy! And come back!
Tuesday, October 14, 2014
PKU Adults: A Mythical Being
I was scrolling through Facebook the other day when I came across this:
http://adultswithpku.org/Home.aspx
It's a website, put out by the NPKUA (National PKU Alliance) for Adults with PKU!!!!
I'm sure all of you are just sitting back thinking, "Yay. So what?" I don't think you understand, how monumental this is for me as a PKU'er.
It feels like for the first time, they are recognizing that there are adults who have PKU. Until, I attended PKU Camp, I had never met an Adult PKU'er. In fact, I had barely interacted with PKU'ers my own age. If it wasn't for Camp PHEver, I wouldn't have met a PKU Adult until I was one myself.
Before then, Adults PKU'ers were a thing of myth to me. I knew I was going to have PKU my entire life, but only because the doctors told me that was the case. I didn't have an example to look up to.
But, I talked a lot about that earlier (see May 2014 entitled: What every child needs).
As an Adult PKU'er myself, I still haven't met a lot of PKU Adults. Most of the activities held in my are are for young children. For a while, it felt like once you turned 18 you were cut off from any social interactions with other PKU'ers.
Most of the things I know about PKU I've either googled, asked my dietician, or experienced myself.
But this website changes things!
Nationally, they are recognizing that PKU Adults exist. It's a source of information for whatever questions you may have. There's a forum. (Just, don't be one of those lunatics who get into some dumb argument over something that's your own opinion.) It talks about insurance. It has the latest PKU news on it.
There's a MENTOR PROGRAM FOR Maternal PKU!!!! So that PKU ladies who want to be pregnant or are currently pregnant can get advice from ladies with PKU who already have been through it.
This is exciting, because for the longest time I didn't know if I was going to be able to have kids. I didn't know anyone who had been PKU and had kids. But, now you can have someone who's been there and done that to help and support!
This website, at least to me, means that PKU Adults are finally being recognized. PKU is a life-long life-style. Back in the 80's (or so, it's not a solid fact) PKU'ers went off diet when they were a certain age. There were no PKU Adults. Now there are. Because, now we know that PKU is for life. And now, we are recognizing that they are there.
PKU Adults are not mythical beings. They are real! And I am one of them.
http://adultswithpku.org/Home.aspx
It's a website, put out by the NPKUA (National PKU Alliance) for Adults with PKU!!!!
I'm sure all of you are just sitting back thinking, "Yay. So what?" I don't think you understand, how monumental this is for me as a PKU'er.
It feels like for the first time, they are recognizing that there are adults who have PKU. Until, I attended PKU Camp, I had never met an Adult PKU'er. In fact, I had barely interacted with PKU'ers my own age. If it wasn't for Camp PHEver, I wouldn't have met a PKU Adult until I was one myself.
Before then, Adults PKU'ers were a thing of myth to me. I knew I was going to have PKU my entire life, but only because the doctors told me that was the case. I didn't have an example to look up to.
But, I talked a lot about that earlier (see May 2014 entitled: What every child needs).
As an Adult PKU'er myself, I still haven't met a lot of PKU Adults. Most of the activities held in my are are for young children. For a while, it felt like once you turned 18 you were cut off from any social interactions with other PKU'ers.
Most of the things I know about PKU I've either googled, asked my dietician, or experienced myself.
But this website changes things!
Nationally, they are recognizing that PKU Adults exist. It's a source of information for whatever questions you may have. There's a forum. (Just, don't be one of those lunatics who get into some dumb argument over something that's your own opinion.) It talks about insurance. It has the latest PKU news on it.
There's a MENTOR PROGRAM FOR Maternal PKU!!!! So that PKU ladies who want to be pregnant or are currently pregnant can get advice from ladies with PKU who already have been through it.
This is exciting, because for the longest time I didn't know if I was going to be able to have kids. I didn't know anyone who had been PKU and had kids. But, now you can have someone who's been there and done that to help and support!
This website, at least to me, means that PKU Adults are finally being recognized. PKU is a life-long life-style. Back in the 80's (or so, it's not a solid fact) PKU'ers went off diet when they were a certain age. There were no PKU Adults. Now there are. Because, now we know that PKU is for life. And now, we are recognizing that they are there.
PKU Adults are not mythical beings. They are real! And I am one of them.
Monday, October 6, 2014
Signs
Every PKU'er knows how important it is to stay on diet. If you don't you could end up really hurting your brain (aka mental retardation).
Nobody wants that.
When I was little I used to think that if I went over one day, the next I would be mentally retarded. But it's not like that.
It's a gradual process. And that's what makes it hard. The fact that you don't see anything "horrible" happen immediately after having a high day. And for a moment you think, "this is all a huge conspiracy. PKU doesn't even exist."
But here's the thing... If you pay attention there are small signs telling you when you've had too much Phe that day. And warning you what can happen.
There is variation. Everyone is different. I'm just going off my own symptoms.
For me, I know I've had too much Phe when I get a headache. It's hard to focus on anything. I'm overly moody. My forehead feels like it's overheating. And eventually (if I ignore it, which I seldom do) I vomit.
Yeah... not that pleasant.
And yet, important. Because if we didn't have these signs, we'd just keep consuming phe. And then one day, we'd go over the tipping point. I don't need to tell you what happens then.
But, knowing when you've had enough phe is important. That way you can stay far away from the danger zone, and live the healthy life you can live while on diet.
Nobody wants that.
When I was little I used to think that if I went over one day, the next I would be mentally retarded. But it's not like that.
It's a gradual process. And that's what makes it hard. The fact that you don't see anything "horrible" happen immediately after having a high day. And for a moment you think, "this is all a huge conspiracy. PKU doesn't even exist."
But here's the thing... If you pay attention there are small signs telling you when you've had too much Phe that day. And warning you what can happen.
There is variation. Everyone is different. I'm just going off my own symptoms.
For me, I know I've had too much Phe when I get a headache. It's hard to focus on anything. I'm overly moody. My forehead feels like it's overheating. And eventually (if I ignore it, which I seldom do) I vomit.
Yeah... not that pleasant.
And yet, important. Because if we didn't have these signs, we'd just keep consuming phe. And then one day, we'd go over the tipping point. I don't need to tell you what happens then.
But, knowing when you've had enough phe is important. That way you can stay far away from the danger zone, and live the healthy life you can live while on diet.
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