It's that time of year, again. My sewing machine has been singing, cloth snippets sprinkle the floor, and everyone checks clothes piles for pins before snatching them off the sofa or lounging over them. (A nasty habit I discourage, growl about, snap over yet never quite manage to eradicate)
Costumes have taken shape. Plans are made to decorate the front yard (although I'm not so sure the cobwebs will make it out...) and the excitement surrounding trick or treating is beginning to build.
School parties are also being planned, and the buzz on all the parenting with food allergy boards centers on the challenge of preparing appealing treats that the kids will enjoy.
Unfortunately, although we've all read and raved over "The Unhealthy Truth", I see that it just hasn't been taken to heart by many.
In the face of adversity...and potential tears or disappointment...the worst in us comes out. Parents who spring for organic milk, hormone free meat, and all natural juice are stocking their cupboards with vibrant sprinkles, frighteningly neon chewy candies, bright lollipops and other chemical experiments. Favorite ghoul goodies of the year include crispy rice treats, made with marshmallows (corn syrup, blue dye and powdered sugar), crisped rice cereal, margarine and lots of sugar, colored with bottled coloring or decorated with canned frosting (more corn syrup and several preservatives and artificial flavoring compounds) and food coloring gels; clear cups filled with artificially vibrant colors of gelatin decorated to look like monster heads, and of course homemade cookies and cupcakes with monstrous amounts of tinted icing.
These goodies can be made without gluten, or dairy, or nuts. They are free of the top 8 allergens and sometimes even a few more. They can delight kids who eat the evil eight on a daily basis, while allowing our own necessarily deprived kids feel like one of the bunch.
It's lonely having allergies that preclude even those decorations. Although, I'm happy for the excited parents and the smiling recipients.
Unfortunately, I can't help but wonder what the long term trade off is.
Artificial colors trigger major migraines in my oldest. Studies show that they cause hyperactive activity in children not diagnosed with ADHD. They are a neurological stimulant. And certain ones are linked to cancer in laboratory animals.
And they don't even have any redeeming nutritional flavor. And, as petrochemicals derived from coal tar, they're bad for the environment to boot.
Halloween isn't just a once a year, rare treat excuse for a food fest. It's the gateway to 3 months full of food related activities. As we finish off the Trick or Treat leftovers, we'll start in on Friendship Feasts, winter wonderlands, and ending with Valentines. Then a short break before spring and summer parties. More sugar, more food coloring to cover the absence of allergens.
As we drift farther into the year away from 'candy day' we tell ourselves that we're cutting back. But in reality, Halloween is the setback day. We make an allowance for this one "special day" of sugar and sweet poisons, then we simply spend the next several months making less bad choices, remembering how much junk we sent coursing through our brains and intestines to celebrate the spirits...and congratulate ourselves on comparative restraint.
My kids know that food colorings aren't a special treat. They'll be not only content, but giddy over a few chocolate bars and some Yummy Earth Lollipops, supplemented with silly bandz.
Of course, they are blessed with an immediate reaction. They can look at a confection and weigh it's tantalizing taste with tonight's pain, and although I recognize the maturity involved it breaks my heart to see them struggle.
Unfortunately, this is the time of year when dye triggered reactions or 'allergies' are the loneliest. As I bond with other food allergy moms, I'm still the odd man out...but even if I COULD give my kids that stuff, I like to think I wouldn't want to. I realize that it would be a slippery slope, one I'm glad not to have to navigate.
Meanwhile, we'll enjoy the finer points of Halloween. The harvest festivals, the scarecrows and pumpkin carving, the costumes and spooky decorations. We'll bake cookies, and squash, and put away the air conditioner. We'll turn on the porch light and sip cocoa. And the kids will tumble into bed, having survived the toughest food allergy holiday of the year.
Tuesday, October 26, 2010
Tuesday, September 28, 2010
There is nothing in our society more emotional than the subject of food. Just ask any mother to be...the battle between breast and bottle usurps more conversations and internet boards than any other newborn topic. Then there is the question of when to introduce solids (You're a bad mom if you intro too early. An even worse one if you starve your poor darling by introducing 'too late'. And the standards keep changing.) Then there are religious dietary restrictions. Health nuts. Food allergies. Food intolerances. Behavior disorders responding to dietary intervention. Pesticides, salicylates, MSG, preservatives, sugar and transfats.
However...although many of these may bring about a spike in blood pressure, or a bona fide shouting match...the most explosive issue in PTA meetings across America can be the issue surrounding a simple Peanut Butter sandwich.
It's simple. It's easy. It's tasty. It's deadly to a select few.
And that's what adults can't even wrap their brains around.
It scares me to think what kids can do. That even at their most malicious, the elementary school kids who pick up on their parents' annoyance with a potential peanut butter ban or their classmates obvious avoidance of anything peanut related, won't realize the potential cost of exposure. They may think they're being funny by shoving a granola bar under an allergy sufferer's nose, or smearing peanut butter on someone's arm. They may know it's mean. But teasing, in their brains, is designed to demonstrate the futility of an irrational fear. There's no room in their for the possibility that a fear of food could possibly be rational.
What really scares me are the potential consequences. Not just for the victim, but the attacker.
Imagine that you're 8 years old. You hate pink. You passionately hate pink. Your friend's favorite color is pink, and she happens to wear a pink baseball cap to school one day. "Wear it!" she says, and you shake your head.
This evolves into a battle of wills, and at some point she jumps up and pops it on your head...you brush it off, glare at her, the teacher tells you both to knock it off, she giggles uncomfortably and you later make up.
Now imagine you're the "bully" with the pink cap. And your friend says she doesn't want to wear it. After insisting that it's pretty, it'll look nice, it won't clash with her iron-red hair, you pop it on her head...and she knocks it off, falls down and starts gasping for breath. An ambulance arrives and she's rushed to the hospital, unconscious.
Obviously, you're at fault for forcing the cap over her head. You knew she didn't like pink, didn't want to wear the cap, and you refused to accept her wishes. But you didn't comprehend that putting a cap on her head could kill her.
It's the same thing with food allergies. For the vast majority of kids, food is simply an aesthetic experience. They may not like certain textures or temperatures, or flavors. But they express their unique opinions and that's that. Most adults experience childhood opinions simply as an extension of their sense of selves...kids express opinions and in their limited lifespan sense that whether they get a red or green lollipop is a matter of life and death; they want to live...they want a red one like their best friend or they'll be doomed to dorky green forever. (This is what spawned the infamous "Get what you get and don't throw a fit" saying)
Unfortunately, food allergic kids get lumped in the same category as the doomed dorks...the ones who are picky, won't eat crusts or colors or soggy crackers. The ones who recoil from plantlike objects on their plate.
It's a hard situation. No one can fault the tuna fish lover for sticking their tongue out at the picky eater or waving their odorous sandwich under the nose of someone who's pretending to gag. As long as both parties are having relative fun, it's relatively harmless.
But what about a kid who is fearful of peanut butter sandwiches...because they have an epi pen sequestered in their belt? Or because they've recently tested positive for peanuts as an allergen and their parents are in the process of ascertaining how serious the allergy is? Their fear is real, based on symptomatic consequences, not aesthetics.
How is a yard duty to know the difference between one kid screaming "No, keep that sandwich away!" because it's gross and they make people laugh by reacting, and another screaming "No, keep it away" out of real fear? The fact is they can't. At this point in time, the severity and far reaching implications of food allergy are just too abstract for most people.
Food allergies shouldn't relegate a kid to a lifelong bubble. A child with food restrictions is still a child, first and foremost. They deserve to live life to the fullest of their ability, and even the ADA protects that right.
Which is why the new trend of Food Bullies is so disturbing. Neither the bully nor the victim are sure how to define it. Even witnesses might not process, immediately, the dangers of what's going on. But, it impacts a child's sense of safety. It threatens certain children's safety, and perhaps their lives.
My kids are lucky. If faced with a food bully, they will be annoyed. Frustrated, their feelings possibly hurt. Penguin assures me that the worst bullies she sees are substitute teachers, who tell her that milk is important and she will get very sick if she keeps refusing to drink it. I'm not sure if this makes me pleased, or sad. Since the behavior is obviously judgemental, but not necessarily bullying. And there's not much I can do (other than calling the office each time it happens to express my displeasure. Which I do. I don't think it's happened in awhile, it's just made a deep impact.) Anyways...my kids will survive food bullies.
But not every parent can literally say the same.
Not every bully is intentional, and that thought is just as scary.
I will continue to teach my kids the importance of tolerance, and accepting that something specific might be important to one person for reasons that we simply can't comprehend but should respect.
However...although many of these may bring about a spike in blood pressure, or a bona fide shouting match...the most explosive issue in PTA meetings across America can be the issue surrounding a simple Peanut Butter sandwich.
It's simple. It's easy. It's tasty. It's deadly to a select few.
And that's what adults can't even wrap their brains around.
It scares me to think what kids can do. That even at their most malicious, the elementary school kids who pick up on their parents' annoyance with a potential peanut butter ban or their classmates obvious avoidance of anything peanut related, won't realize the potential cost of exposure. They may think they're being funny by shoving a granola bar under an allergy sufferer's nose, or smearing peanut butter on someone's arm. They may know it's mean. But teasing, in their brains, is designed to demonstrate the futility of an irrational fear. There's no room in their for the possibility that a fear of food could possibly be rational.
What really scares me are the potential consequences. Not just for the victim, but the attacker.
Imagine that you're 8 years old. You hate pink. You passionately hate pink. Your friend's favorite color is pink, and she happens to wear a pink baseball cap to school one day. "Wear it!" she says, and you shake your head.
This evolves into a battle of wills, and at some point she jumps up and pops it on your head...you brush it off, glare at her, the teacher tells you both to knock it off, she giggles uncomfortably and you later make up.
Now imagine you're the "bully" with the pink cap. And your friend says she doesn't want to wear it. After insisting that it's pretty, it'll look nice, it won't clash with her iron-red hair, you pop it on her head...and she knocks it off, falls down and starts gasping for breath. An ambulance arrives and she's rushed to the hospital, unconscious.
Obviously, you're at fault for forcing the cap over her head. You knew she didn't like pink, didn't want to wear the cap, and you refused to accept her wishes. But you didn't comprehend that putting a cap on her head could kill her.
It's the same thing with food allergies. For the vast majority of kids, food is simply an aesthetic experience. They may not like certain textures or temperatures, or flavors. But they express their unique opinions and that's that. Most adults experience childhood opinions simply as an extension of their sense of selves...kids express opinions and in their limited lifespan sense that whether they get a red or green lollipop is a matter of life and death; they want to live...they want a red one like their best friend or they'll be doomed to dorky green forever. (This is what spawned the infamous "Get what you get and don't throw a fit" saying)
Unfortunately, food allergic kids get lumped in the same category as the doomed dorks...the ones who are picky, won't eat crusts or colors or soggy crackers. The ones who recoil from plantlike objects on their plate.
It's a hard situation. No one can fault the tuna fish lover for sticking their tongue out at the picky eater or waving their odorous sandwich under the nose of someone who's pretending to gag. As long as both parties are having relative fun, it's relatively harmless.
But what about a kid who is fearful of peanut butter sandwiches...because they have an epi pen sequestered in their belt? Or because they've recently tested positive for peanuts as an allergen and their parents are in the process of ascertaining how serious the allergy is? Their fear is real, based on symptomatic consequences, not aesthetics.
How is a yard duty to know the difference between one kid screaming "No, keep that sandwich away!" because it's gross and they make people laugh by reacting, and another screaming "No, keep it away" out of real fear? The fact is they can't. At this point in time, the severity and far reaching implications of food allergy are just too abstract for most people.
Food allergies shouldn't relegate a kid to a lifelong bubble. A child with food restrictions is still a child, first and foremost. They deserve to live life to the fullest of their ability, and even the ADA protects that right.
Which is why the new trend of Food Bullies is so disturbing. Neither the bully nor the victim are sure how to define it. Even witnesses might not process, immediately, the dangers of what's going on. But, it impacts a child's sense of safety. It threatens certain children's safety, and perhaps their lives.
My kids are lucky. If faced with a food bully, they will be annoyed. Frustrated, their feelings possibly hurt. Penguin assures me that the worst bullies she sees are substitute teachers, who tell her that milk is important and she will get very sick if she keeps refusing to drink it. I'm not sure if this makes me pleased, or sad. Since the behavior is obviously judgemental, but not necessarily bullying. And there's not much I can do (other than calling the office each time it happens to express my displeasure. Which I do. I don't think it's happened in awhile, it's just made a deep impact.) Anyways...my kids will survive food bullies.
But not every parent can literally say the same.
Not every bully is intentional, and that thought is just as scary.
I will continue to teach my kids the importance of tolerance, and accepting that something specific might be important to one person for reasons that we simply can't comprehend but should respect.
Monday, September 06, 2010
Time in a bottle
Some days I wish I could simply bottle.
It's Labor Day weekend. We should be going to a park, or the zoo, or cleaning out the garage. We probably should be barbequing. Or shopping.
Instead, I'm sitting at the computer, listening to the chatter of two voices and the clink of their toys as they create a wonderland in the livingroom. There are corrals set up around the fireplace. Toy bins have been upended to make either traps or houses, it's hard to tell which. Molded plastic horses, and kitens, and dogs and jungle animals are carefully laid out in intricate interactions across the floor. There are strings draped from chair rungs to plastic hooves, and bits of paper shredded and piled as 'winter preperations'. There's giggling, and I catch bits and pieces of phrases like "Oh, wait...no, I have it...they should..." and "That's a great idea! And then..."
I let the moments wrap around me, holding my breath when I slip into the room, watching their heads bowed together over a cheap plastic saddle, and slipping out again, careful not to diturb their game.
We don't get full blown games like this very often anymore.
There was a time when any item, any moment, every day was filled with fantasy worlds and magical moments. But at 8 and 12, we're straddling the lines between child and teenager. Family or friends. Toys and gadgets. Games and gossip.
Today, I'm listening to the blossom of creativity as they dream. Anything could happen.
Earlier, Penguin asked for pizza bread, expressing a desire for some savory baked item. We went online, then whipped together a cup of brown rice flour, an egg, some salt, oil and just over half a cup of water.
Her tummy is filled with this concoction dipped in pasta sauce. (her sister spread jam on it...Bumblebee believes anything baked should be sweet) And I feel like it is a good day. A successful day. A fulfilling day.
Even if there are dishes to do and no path cutting across the living room.
There's laundry to fold, and shelves that need dusting...but just now, I'm going to close my eyes and listen to kids being kids. Because today won't last. And a camera couldn't hope to capture it.
It's Labor Day weekend. We should be going to a park, or the zoo, or cleaning out the garage. We probably should be barbequing. Or shopping.
Instead, I'm sitting at the computer, listening to the chatter of two voices and the clink of their toys as they create a wonderland in the livingroom. There are corrals set up around the fireplace. Toy bins have been upended to make either traps or houses, it's hard to tell which. Molded plastic horses, and kitens, and dogs and jungle animals are carefully laid out in intricate interactions across the floor. There are strings draped from chair rungs to plastic hooves, and bits of paper shredded and piled as 'winter preperations'. There's giggling, and I catch bits and pieces of phrases like "Oh, wait...no, I have it...they should..." and "That's a great idea! And then..."
I let the moments wrap around me, holding my breath when I slip into the room, watching their heads bowed together over a cheap plastic saddle, and slipping out again, careful not to diturb their game.
We don't get full blown games like this very often anymore.
There was a time when any item, any moment, every day was filled with fantasy worlds and magical moments. But at 8 and 12, we're straddling the lines between child and teenager. Family or friends. Toys and gadgets. Games and gossip.
Today, I'm listening to the blossom of creativity as they dream. Anything could happen.
Earlier, Penguin asked for pizza bread, expressing a desire for some savory baked item. We went online, then whipped together a cup of brown rice flour, an egg, some salt, oil and just over half a cup of water.
Her tummy is filled with this concoction dipped in pasta sauce. (her sister spread jam on it...Bumblebee believes anything baked should be sweet) And I feel like it is a good day. A successful day. A fulfilling day.
Even if there are dishes to do and no path cutting across the living room.
There's laundry to fold, and shelves that need dusting...but just now, I'm going to close my eyes and listen to kids being kids. Because today won't last. And a camera couldn't hope to capture it.
Monday, August 09, 2010
Jealousy
Jealousy burns, bitter and sour, a shield against hurt and anger. Frustration.
Some parents get to look at a treat lovingly prepared by their kids, and see the pride, the smiling faces. All they have to fear is a bit of dust, unclean hands. Unique flavoring, and how exactly to keep themselves from betraying their misgivings.
And then there's the food allergy parent. The corn allergy parent, to be exact.
My loving kids ransacked their brains and raided the kitchen. They found bananas, strawberries, and chocolate chips. They searched the cupboards for real chopsticks. They put two and two together and tucked them, secretly, into the freezer. A few hours later, they began bugging me for popsicles.
I knew something was up...but not what.
I treasure the pride, the ear-to-ear grins, the shining eyes.
But they were out of safe bananas last time I went to the store. And I tend to react to store bought strawberries.
So all I could do was squish them up tight in a hug, grin back my tears, and thank them from the bottom of my heart, while breaking theirs.
Maybe it's not such a big deal to say "not right now" if you don't have food allergies. Maybe just the restrictions make food itself seem like a much bigger deal than it is. But it gets old, being on my toes all the time.
Choosing whether to grin and bear the digestive disturbances that go on and on and on...or the discomfort of being in the spotlight.
I know the grass is always greener. We have so much to be thankful for. But tonight, I'm feeling sad.
And in dire need of a chocolate covered banana that hasn't been gassed to ripen properly. At least the kids aren't too old to snuggle up and watch "Road to El Dorado" with me. A good snuggle and a funny movie might just make up for it all.
Well, that and a handful of chocolate chips.
Some parents get to look at a treat lovingly prepared by their kids, and see the pride, the smiling faces. All they have to fear is a bit of dust, unclean hands. Unique flavoring, and how exactly to keep themselves from betraying their misgivings.
And then there's the food allergy parent. The corn allergy parent, to be exact.
My loving kids ransacked their brains and raided the kitchen. They found bananas, strawberries, and chocolate chips. They searched the cupboards for real chopsticks. They put two and two together and tucked them, secretly, into the freezer. A few hours later, they began bugging me for popsicles.
I knew something was up...but not what.
I treasure the pride, the ear-to-ear grins, the shining eyes.
But they were out of safe bananas last time I went to the store. And I tend to react to store bought strawberries.
So all I could do was squish them up tight in a hug, grin back my tears, and thank them from the bottom of my heart, while breaking theirs.
Maybe it's not such a big deal to say "not right now" if you don't have food allergies. Maybe just the restrictions make food itself seem like a much bigger deal than it is. But it gets old, being on my toes all the time.
Choosing whether to grin and bear the digestive disturbances that go on and on and on...or the discomfort of being in the spotlight.
I know the grass is always greener. We have so much to be thankful for. But tonight, I'm feeling sad.
And in dire need of a chocolate covered banana that hasn't been gassed to ripen properly. At least the kids aren't too old to snuggle up and watch "Road to El Dorado" with me. A good snuggle and a funny movie might just make up for it all.
Well, that and a handful of chocolate chips.
Memories
It's funny how the mind works.
Some deep seated memory can float to the surface, and pieces of a mystery will fall into place, leaving you chuckling to yourself (or smacking yourself in the forehead) but helpless to do anything to change the past. A memory is simply a memory.
Today's trigger was a family reunion, and my mind quickly drifted back several years, to the same family reunion (with more relatives I was excited about seeing.) my brother had an earache or some such not-bad, but not-sociable illness, and my dad volunteered to take me. Afterall, it was his family and he really wanted to visit with them.
We stopped at Subway on the way. Purchased sandwiches, and I got away with ordering my preferred salad-on-bread...although he insisted on the bread. We got to the picnic, and he wanted me to sit down and eat.
This made no sense to me.
I was 13 or 14 at the time. I could not understand why he didn't "get" that eating came at the end of fun. For me, eating was an End. I didn't like the beginning it signified. I'd eat, because I was hungry. But then I'd feel bloated...my clothes would hurt. My stomach would whine. I'd feel itchy, and hot, and nauseous. Eating was a "Now you curl up in a chair, close your eyes and listen to people tell stories" activity.
Eating meant time to get in the car, and go home, and curl up in bed with the trash can in easy reach.
Eating was social...but it came at the end of socializing for me. It was the start of a game called "How long can we be civil before giving in to misery this time?"
Looking back, this was the timeframe my Celiac symptoms started kicking in. That 'healthy' whole wheat bread packed a whollop of gluten. And it made me cringe because my instincts said bread was bad. Salad was good. However, I was losing weight which made my parents want to stuff me full of carbs and ice cream. It all makes perfect sense, looking back now.
But this memory took place then, before we knew that food could bite back. So my dad and I arrived, he told me to sit and eat, and I refused. He was frustrated, disappointed, I knew my behavior was embarrassing him. But still, I put it off, trying to be polite and feeling utterly confused and frustrated. To me, everyone had to know what eating felt like and I wanted to go exploring. Greet some people. Commune with nature. Go on an expedition with my cousin. (I was just barely young enough to pretend we were lost in a forest...we'd both read My Side of the Mountain...and the reunion took place in a campground area so no one had to put up overnight guests.) Eating would have ruined it all.
It was bad enough they'd made me choke down breakfast.
My dad was smart. He didn't get into a big blow out fight with me. He didn't turn it into a battle of wills, or let this disagreement turn into a showdown in front of his entire family. He simply let go and said if I wanted to go hungry I could go hungry.
And as I recall I was perfectly happy until I got hungry.
At which point I learned that my beloved salad-on-bread had been disposed of because mayo doesn't keep. And food time was over, so most was packed up and put away. You don't get dessert until you eat lunch...and my lunch was gone.
I remember feeling confused, betrayed, hungry. And the look I got from my dad confused me further. He'd won, he was right. But so was I, in my mind. Eating would have destroyed the afternoon of fun. Why on Earth were people chatting it up after eating? How could they stomach a game of volleyball with a whirlwind in their bellies? Were grownups some sort of masochists who thrived on abdominal discontent or did they have some magic spell I didn't know about?
I'm sure I was rotten to me dad for the rest of the afternoon, and pouted all the way home. I know I was tired and cranky. Now I know that I was missing a piece of the puzzle...the piece that says you aren't supposed to feel like you're exploding two bites into dinner. A satisfying meal shouldn't leave you wanting to curl up and sleep it off so you don't have to pay attention to each step of digestion. But then...then I thought I was normal.
My parents were missing the piece of how food made me feel. They assumed I simply didn't want to sit still long enough to swallow. They thought I might be concerned about calories (hence the bread, and the bowls of ice cream I consumed under watchful eyes). They thought it was a teenage rebel thing. And probably there was some teenage attitude. I'm certain I was a handful.
But now I know that it wasn't all teenage angst. I had Celiac Disease. I have Celiac Disease. I still hesitate to eat before socializing, it's just an ingrained, learned behavior. I'm still startled to notice when I don't feel rotten after eating. I still think "Oh, rats, I just ate!" when the kids or my husband want to go out on the spur of a moment. There's so much more to food intolerances than we know. And when they begin early, there's this added dimension of not having a normal baseline to guide symptoms by.
I found an old diary from when I was 9. It had all of 5 entries in it. One read "Got my allergy shots today. Read a book. Threw up in kitchen and went to bed early. Wrote in diary. Going to sleep."
Hmmm. Another said I felt sick after dinner and went to bed. I wish I'd kept a better record of how often those allergy shots made me sick, because that seems like another piece of the puzzle.
Meanwhile, memories will continue to arise...revealing more of how undiagnosed food intolerances have affected my life and who I am. And Dad...I'm really sorry I was so rotten to you that day. I wanted what you wanted, to enjoy the picnic and the company. We just had different ideas on how to make that happen.
Some deep seated memory can float to the surface, and pieces of a mystery will fall into place, leaving you chuckling to yourself (or smacking yourself in the forehead) but helpless to do anything to change the past. A memory is simply a memory.
Today's trigger was a family reunion, and my mind quickly drifted back several years, to the same family reunion (with more relatives I was excited about seeing.) my brother had an earache or some such not-bad, but not-sociable illness, and my dad volunteered to take me. Afterall, it was his family and he really wanted to visit with them.
We stopped at Subway on the way. Purchased sandwiches, and I got away with ordering my preferred salad-on-bread...although he insisted on the bread. We got to the picnic, and he wanted me to sit down and eat.
This made no sense to me.
I was 13 or 14 at the time. I could not understand why he didn't "get" that eating came at the end of fun. For me, eating was an End. I didn't like the beginning it signified. I'd eat, because I was hungry. But then I'd feel bloated...my clothes would hurt. My stomach would whine. I'd feel itchy, and hot, and nauseous. Eating was a "Now you curl up in a chair, close your eyes and listen to people tell stories" activity.
Eating meant time to get in the car, and go home, and curl up in bed with the trash can in easy reach.
Eating was social...but it came at the end of socializing for me. It was the start of a game called "How long can we be civil before giving in to misery this time?"
Looking back, this was the timeframe my Celiac symptoms started kicking in. That 'healthy' whole wheat bread packed a whollop of gluten. And it made me cringe because my instincts said bread was bad. Salad was good. However, I was losing weight which made my parents want to stuff me full of carbs and ice cream. It all makes perfect sense, looking back now.
But this memory took place then, before we knew that food could bite back. So my dad and I arrived, he told me to sit and eat, and I refused. He was frustrated, disappointed, I knew my behavior was embarrassing him. But still, I put it off, trying to be polite and feeling utterly confused and frustrated. To me, everyone had to know what eating felt like and I wanted to go exploring. Greet some people. Commune with nature. Go on an expedition with my cousin. (I was just barely young enough to pretend we were lost in a forest...we'd both read My Side of the Mountain...and the reunion took place in a campground area so no one had to put up overnight guests.) Eating would have ruined it all.
It was bad enough they'd made me choke down breakfast.
My dad was smart. He didn't get into a big blow out fight with me. He didn't turn it into a battle of wills, or let this disagreement turn into a showdown in front of his entire family. He simply let go and said if I wanted to go hungry I could go hungry.
And as I recall I was perfectly happy until I got hungry.
At which point I learned that my beloved salad-on-bread had been disposed of because mayo doesn't keep. And food time was over, so most was packed up and put away. You don't get dessert until you eat lunch...and my lunch was gone.
I remember feeling confused, betrayed, hungry. And the look I got from my dad confused me further. He'd won, he was right. But so was I, in my mind. Eating would have destroyed the afternoon of fun. Why on Earth were people chatting it up after eating? How could they stomach a game of volleyball with a whirlwind in their bellies? Were grownups some sort of masochists who thrived on abdominal discontent or did they have some magic spell I didn't know about?
I'm sure I was rotten to me dad for the rest of the afternoon, and pouted all the way home. I know I was tired and cranky. Now I know that I was missing a piece of the puzzle...the piece that says you aren't supposed to feel like you're exploding two bites into dinner. A satisfying meal shouldn't leave you wanting to curl up and sleep it off so you don't have to pay attention to each step of digestion. But then...then I thought I was normal.
My parents were missing the piece of how food made me feel. They assumed I simply didn't want to sit still long enough to swallow. They thought I might be concerned about calories (hence the bread, and the bowls of ice cream I consumed under watchful eyes). They thought it was a teenage rebel thing. And probably there was some teenage attitude. I'm certain I was a handful.
But now I know that it wasn't all teenage angst. I had Celiac Disease. I have Celiac Disease. I still hesitate to eat before socializing, it's just an ingrained, learned behavior. I'm still startled to notice when I don't feel rotten after eating. I still think "Oh, rats, I just ate!" when the kids or my husband want to go out on the spur of a moment. There's so much more to food intolerances than we know. And when they begin early, there's this added dimension of not having a normal baseline to guide symptoms by.
I found an old diary from when I was 9. It had all of 5 entries in it. One read "Got my allergy shots today. Read a book. Threw up in kitchen and went to bed early. Wrote in diary. Going to sleep."
Hmmm. Another said I felt sick after dinner and went to bed. I wish I'd kept a better record of how often those allergy shots made me sick, because that seems like another piece of the puzzle.
Meanwhile, memories will continue to arise...revealing more of how undiagnosed food intolerances have affected my life and who I am. And Dad...I'm really sorry I was so rotten to you that day. I wanted what you wanted, to enjoy the picnic and the company. We just had different ideas on how to make that happen.
Saturday, July 31, 2010
Enjoy Life
In the world of food allergies, there are certain companies that stand out.
And in the world of Corn Allergies, company loyalty seems to reach an all-new high. We thoroughly read every label, looking for minute additives...and then catch the hopeful words "No Corn". Of course, we know that these two little words simply mean whatever the company has decided that they mean. Perhaps that there is no unprocessed corn product. Or that there is no high fructose corn syrup (Post declared it's Raisin Bran corn free because they use regular corn syrup) Or maybe it means that they actually, *gasp*, know the origins of all of their products...and not one are derived from corn.
As a corn allergy sufferer, I'm always holding my breath for the latter.
Then there are companies who try, really hard, to understand the dynamics of corn allergy. Who contact FAAN and work with them. Continually proclaiming their product to be corn free while the supersensitive of us shiver, shake and break out in hives. "Well, you see, that's very unusual," is the usual response.
But we asked in advance because we knew this was a potential problem.
You can almost hear the shrugging on the other end of the line.
Fortunately, there is one brand that doesn't shrug it off. Enjoy Life foods does claim their food to be corn free, as per FAAN's standards. But they will be upfront and admit in letters and email that if you are very sensitive to corn, the only products truly safe are the Cinnamon Crunch Granola, the Semi Sweet Chocolate Chips and the Boom Choco Boom Dark Chocolate Bar. (Note: Only the varieties above are safe to my knowledge. Always read labels, and contact the company directly about any questions.) Other products have minute amounts of maltodextrin or xanthan or other corn derivatives.
While some of my fellow Uncornies scorn Enjoy Life for claiming corn free when they use some corn derivatives, I have to give them credit for patiently walking the middle ground. They are honest and upfront. As far as the general public goes, these products are corn free. And for the majority of corn allergy sufferers muddling through the grocery store, the purer derivatives are safe enough. It's only for a few of us that there is a problem.
And Enjoy Life is kind enough to answer our questions, offer advice, and encourage us to check with a medical professional before taking any risks.
After 7 years (or so) of experience contacting companies and requesting information, I have to say that Enjoy Life is one of the best companies to deal with. They are responsive, and seem open. They are encouraging and do their best to really understand, or at least sympathize with what the food allergy patient deals with daily.
Thanks Enjoy Life!!!
And in the world of Corn Allergies, company loyalty seems to reach an all-new high. We thoroughly read every label, looking for minute additives...and then catch the hopeful words "No Corn". Of course, we know that these two little words simply mean whatever the company has decided that they mean. Perhaps that there is no unprocessed corn product. Or that there is no high fructose corn syrup (Post declared it's Raisin Bran corn free because they use regular corn syrup) Or maybe it means that they actually, *gasp*, know the origins of all of their products...and not one are derived from corn.
As a corn allergy sufferer, I'm always holding my breath for the latter.
Then there are companies who try, really hard, to understand the dynamics of corn allergy. Who contact FAAN and work with them. Continually proclaiming their product to be corn free while the supersensitive of us shiver, shake and break out in hives. "Well, you see, that's very unusual," is the usual response.
But we asked in advance because we knew this was a potential problem.
You can almost hear the shrugging on the other end of the line.
Fortunately, there is one brand that doesn't shrug it off. Enjoy Life foods does claim their food to be corn free, as per FAAN's standards. But they will be upfront and admit in letters and email that if you are very sensitive to corn, the only products truly safe are the Cinnamon Crunch Granola, the Semi Sweet Chocolate Chips and the Boom Choco Boom Dark Chocolate Bar. (Note: Only the varieties above are safe to my knowledge. Always read labels, and contact the company directly about any questions.) Other products have minute amounts of maltodextrin or xanthan or other corn derivatives.
While some of my fellow Uncornies scorn Enjoy Life for claiming corn free when they use some corn derivatives, I have to give them credit for patiently walking the middle ground. They are honest and upfront. As far as the general public goes, these products are corn free. And for the majority of corn allergy sufferers muddling through the grocery store, the purer derivatives are safe enough. It's only for a few of us that there is a problem.
And Enjoy Life is kind enough to answer our questions, offer advice, and encourage us to check with a medical professional before taking any risks.
After 7 years (or so) of experience contacting companies and requesting information, I have to say that Enjoy Life is one of the best companies to deal with. They are responsive, and seem open. They are encouraging and do their best to really understand, or at least sympathize with what the food allergy patient deals with daily.
Thanks Enjoy Life!!!
Monday, July 19, 2010
Assembly
My husband is on the floor, with an open box and a variety of parts and pieces carefully spread out around him.
"Can I help?" Bumblebee asks.
"Sure," he says, while carefully looking at a packet of screws.
"I found a paper! Hey, these are the directions!"
"Awesome, but we don't need the directions."
She looks at him suspiciously and he defends himself by claiming he's a boy and boys don't usually need directions.
She perks up and grins. "I'm a girl! I could read them for you!"
Problem solved.
"Can I help?" Bumblebee asks.
"Sure," he says, while carefully looking at a packet of screws.
"I found a paper! Hey, these are the directions!"
"Awesome, but we don't need the directions."
She looks at him suspiciously and he defends himself by claiming he's a boy and boys don't usually need directions.
She perks up and grins. "I'm a girl! I could read them for you!"
Problem solved.
Sunday, July 18, 2010
Dear Company Spokesperson,
Thank you so much for your response to the inquiry as to whether or not the ingredients in your product contain corn.
I have to point out, however, that you were not being asked to comment on the safety of corn derivatives for individuals with corn allergies. Nor are you being asked to replace the role of medical advisor. And if I took your advice to discuss every product I was considering placing across my lips with my medical provider, my medical provider would not have time to attend to any other patients. That's why they suggest I do my own research. As they advise every patient to do.
Which is why you received a letter inquiring as to the origination of your ingredients.
I'm pleased to hear that you know of no documented reactions to caramel color/citric acid/microcrystalline cellulose etc. Unfortunately, I have experienced reactions under blind trial conditions. These reactions were identified through the use of food diaries and helpful companies who were willing to share the source of their ingredients. How else would I know why ascorbic from batch A made me sick and ascorbic acid from batch B didn't?
I believe my doctor's response was "Huh, that's weird. There are no documented cases of allergic reactions to these derivatives. But if they affect you like this, I think you should definitely avoid them."
Which brings me full circle to the problem at hand.
Where were your ingredients derived? I am asking for my health, not for the heck of it. I'm not asking for proprietary information. I'm asking for sources of ingredients listed in your product.
If you don't want my business, simply respond that you don't serve people with unique allergies. Don't quote the FDA's impressive quality control measures. I presume, since you are still in business, that you adhere to their policies. I don't really care about FAAN's policies since the top 8 allergens, as identified by the FDA, don't really pertain to corn. But I do think that as a consumer, I have the right to know where products come from. What country. What plant. And whether the plant originated as a seedling or a science fiction worthy science experiment.
Thank you.
This letter was inspired by THIS post at Delphi forums.
Thank you so much for your response to the inquiry as to whether or not the ingredients in your product contain corn.
I have to point out, however, that you were not being asked to comment on the safety of corn derivatives for individuals with corn allergies. Nor are you being asked to replace the role of medical advisor. And if I took your advice to discuss every product I was considering placing across my lips with my medical provider, my medical provider would not have time to attend to any other patients. That's why they suggest I do my own research. As they advise every patient to do.
Which is why you received a letter inquiring as to the origination of your ingredients.
I'm pleased to hear that you know of no documented reactions to caramel color/citric acid/microcrystalline cellulose etc. Unfortunately, I have experienced reactions under blind trial conditions. These reactions were identified through the use of food diaries and helpful companies who were willing to share the source of their ingredients. How else would I know why ascorbic from batch A made me sick and ascorbic acid from batch B didn't?
I believe my doctor's response was "Huh, that's weird. There are no documented cases of allergic reactions to these derivatives. But if they affect you like this, I think you should definitely avoid them."
Which brings me full circle to the problem at hand.
Where were your ingredients derived? I am asking for my health, not for the heck of it. I'm not asking for proprietary information. I'm asking for sources of ingredients listed in your product.
If you don't want my business, simply respond that you don't serve people with unique allergies. Don't quote the FDA's impressive quality control measures. I presume, since you are still in business, that you adhere to their policies. I don't really care about FAAN's policies since the top 8 allergens, as identified by the FDA, don't really pertain to corn. But I do think that as a consumer, I have the right to know where products come from. What country. What plant. And whether the plant originated as a seedling or a science fiction worthy science experiment.
Thank you.
This letter was inspired by THIS post at Delphi forums.
Wednesday, July 14, 2010
Living the Mixed Kitchen Life
Tonight, I ,anaged to get dinner on the table somewhere around the time that 3 of us were hungry. It was nothing fancy. Simply rice pasta (courtesy of Trader Joe's), and a scramble of eggs with carmelized onion and a few greens of varying kinds for those who wanted and could eat them.
Bumblebee ate early, and was requested next door, where I offered to walk her.
"Don't poison my dinner," I teasingly warned Penguin and my dear husband.
Amidst their protests that they love me, would never poison me, did I even have to remind them? I headed out the door with Bumblebee, gave her a kiss, told her when to return and to be good, and returned home.
Writing the prior paragraph took longer than the entire process.
However, when I stepped into the kitchen, Penguin was staring at her plate and my husband was at the sink. My place was empty.
"What happened?" I queried, trying to see the joke in the matter and thinking that it really looked like my dish in the sink that was being furiously scrubbed.
Dh turned and gave me the look that I deserved to give him.
"One thing. You asked me to do one little thing. And I couldn't do it!"
"I was only gone two minutes!" I exclaimed, more confused than upset.
"I know!"
At this point Penguin couldn't help bursting into laughter at the ridiculousness of the situation (and probably scared that her parents were going to start a full fledged fight at the dinner table) And confessed that they'd poisoned my plate accidentally.
Apparently he reached across the table to help Penguin pour some sauce, and a small amount splashed onto my plate.
If we were a normal household, I'd have had a sprinkle of undesired flavoring, and ignored it.
But with food allergies? It meant an extra plate and eating tomorrow's leftovers.
Dh was really upset with himself, but like I told him...better to acknowledge the error and not make me sick (I might have suspected eggs! Or onion! Or the cheaper TJ pasta! Or heaven forbid the handful of chocolate chips I treated myself to after dinner)
It disturbs us because neither of us like the message we send our kids when a crumb, or a drop, of something unintentional happens to land in an unexpected area. But, the kids aren't satisfied on a corn free diet, and my husband doesn't really want to restrict his diet that far. And asking makes me feel bad.
So, we'll continue to be supervigilant. I'll try not to lose my temper when accidents happen (I try...And this time there was plenty to eat so I really wasn't upset!) And he'll have to forgive himself when things do. The real point is that we need to continue to be aware and avert disaster.
Bumblebee ate early, and was requested next door, where I offered to walk her.
"Don't poison my dinner," I teasingly warned Penguin and my dear husband.
Amidst their protests that they love me, would never poison me, did I even have to remind them? I headed out the door with Bumblebee, gave her a kiss, told her when to return and to be good, and returned home.
Writing the prior paragraph took longer than the entire process.
However, when I stepped into the kitchen, Penguin was staring at her plate and my husband was at the sink. My place was empty.
"What happened?" I queried, trying to see the joke in the matter and thinking that it really looked like my dish in the sink that was being furiously scrubbed.
Dh turned and gave me the look that I deserved to give him.
"One thing. You asked me to do one little thing. And I couldn't do it!"
"I was only gone two minutes!" I exclaimed, more confused than upset.
"I know!"
At this point Penguin couldn't help bursting into laughter at the ridiculousness of the situation (and probably scared that her parents were going to start a full fledged fight at the dinner table) And confessed that they'd poisoned my plate accidentally.
Apparently he reached across the table to help Penguin pour some sauce, and a small amount splashed onto my plate.
If we were a normal household, I'd have had a sprinkle of undesired flavoring, and ignored it.
But with food allergies? It meant an extra plate and eating tomorrow's leftovers.
Dh was really upset with himself, but like I told him...better to acknowledge the error and not make me sick (I might have suspected eggs! Or onion! Or the cheaper TJ pasta! Or heaven forbid the handful of chocolate chips I treated myself to after dinner)
It disturbs us because neither of us like the message we send our kids when a crumb, or a drop, of something unintentional happens to land in an unexpected area. But, the kids aren't satisfied on a corn free diet, and my husband doesn't really want to restrict his diet that far. And asking makes me feel bad.
So, we'll continue to be supervigilant. I'll try not to lose my temper when accidents happen (I try...And this time there was plenty to eat so I really wasn't upset!) And he'll have to forgive himself when things do. The real point is that we need to continue to be aware and avert disaster.
Monday, July 12, 2010
Baking free
No gluten. No dairy. No corn.
After 4-5 years, you'd think I had this down. But no, I still manage to burn a batch of cookies by doing something dumb, like not thinking.
So here are a few of my lessons learned the hard way:
Turn the oven down. This is the one I get caught on most frequently. I go into autopilot and turn the oven up to 350*. Casseroles still cook at 350*. Cookies and cake go in at 325*.
Cream the sugar with the eggs, not the fat. Something about gluten free foods reduces the structural stability of the finished product. Beating the eggs with sugar helps to build the framework that gluten would otherwise offer.
To help things rise, beat the eggs in a liquid. I have no idea why this works. But if I measure out the liquid first, then beat in the eggs, then fold the dry mix in, I get nice floofy pancakes instead of creamy crepes. No baking soda required (which, in turn, means no sugar is necessary. The batter isn't sweet, but it isn't bitter either.)
Use a smaller container. There just isn't the same stability in gluten free cooking. Especially when you don't have butter. (or margarine) Smaller containers offer the batter something to climb up against, to cling to, to push on. Whatever the mechanism, they are less likely to come out of the oven with a dense, flat cake.
Extra grease or parchment paper is a must. GF goodies stick, and crumble. Loosen them ASAP, too.
Chill the dough. Cookies spread less and really are easier to work with if you take the time to toss the dough into the fridge for half of an hour. (Yes, I still skip this step a lot. And I get a lot of well-done cookies to show for it.)
Use spices for flavor. Nutmeg and cinnamon add a nice touch to just about anything sweet, especially when you don't have vanilla. Using brown sugar instead of white addsd more depth of flavor, too.
Don't expect your creations to mimic Mrs. Field's famous cookies. Just be happy that they are sweet and satisfying, especially if you can't handle the gums.
After 4-5 years, you'd think I had this down. But no, I still manage to burn a batch of cookies by doing something dumb, like not thinking.
So here are a few of my lessons learned the hard way:
Turn the oven down. This is the one I get caught on most frequently. I go into autopilot and turn the oven up to 350*. Casseroles still cook at 350*. Cookies and cake go in at 325*.
Cream the sugar with the eggs, not the fat. Something about gluten free foods reduces the structural stability of the finished product. Beating the eggs with sugar helps to build the framework that gluten would otherwise offer.
To help things rise, beat the eggs in a liquid. I have no idea why this works. But if I measure out the liquid first, then beat in the eggs, then fold the dry mix in, I get nice floofy pancakes instead of creamy crepes. No baking soda required (which, in turn, means no sugar is necessary. The batter isn't sweet, but it isn't bitter either.)
Use a smaller container. There just isn't the same stability in gluten free cooking. Especially when you don't have butter. (or margarine) Smaller containers offer the batter something to climb up against, to cling to, to push on. Whatever the mechanism, they are less likely to come out of the oven with a dense, flat cake.
Extra grease or parchment paper is a must. GF goodies stick, and crumble. Loosen them ASAP, too.
Chill the dough. Cookies spread less and really are easier to work with if you take the time to toss the dough into the fridge for half of an hour. (Yes, I still skip this step a lot. And I get a lot of well-done cookies to show for it.)
Use spices for flavor. Nutmeg and cinnamon add a nice touch to just about anything sweet, especially when you don't have vanilla. Using brown sugar instead of white addsd more depth of flavor, too.
Don't expect your creations to mimic Mrs. Field's famous cookies. Just be happy that they are sweet and satisfying, especially if you can't handle the gums.
Saturday, July 10, 2010
The Kernel of Fear
For about a year now, we've had a leaky bathtub faucet. I've been assailed by guilt whenever the radio reminds me to turn off the tap while flossing, reprimanded by my kids for wasting water while waiting for it to heat and lain awake listening to the drip-drip-drip.
It's not that I didn't want to repair it. As soon as I realized it couldn't flip all the way off, I got on the phone and the landlord sent a plumber out.
Unfortunately...he couldn't twist the faucet off the wall because it had rusted together with the pipes behind the wall. "No problem," I was assured, "We just go in from behind. It'll take a day, two at the most."
Well...behind that wall was a massive china cabinet, with every piece of china and breakable knick-knack that I had any desire of keeping intact. In the interest of protecting those breakables, the whole thing had been tightly bolted to the wall. Which would take a day or two to reposition by itself.
I'll admit, I hid behind this feat for much longer than necessary.
Why?
The fear of corn.
You see, in order to get to the pipes, they needed to slice through the wall. When they were through, they needed to replaster the wall, patching up the drywall. And there's corn in that.
Cornstarch makes a handy adhesive that doesn't appeal to bugs. (Hm, I wonder why? Maybe they instinctively suspect that it's dangerous?) Interestingly enough, I've heard that there's wheat starch in some drywall compounds, too. Of course, gypsum is the main ingredient. But there's corn, too.
And where there's corn, there's pain.
They'd be filling my house with cornstarch, turning off my water, and taking over the bathroom. While I hung out, smiling politely and asking if there was anything I could do to help besides stay out of the way.
Knowing my reactions to corn, this just built the dread. And the longer it's gone on, the bigger the tower of dread. I huddled in the shadow of it, thinking. I hate missing events. I was too sick to go to the science fair last year. I was miserable through at least one concert, and passed out on my husband's shoulder when a woman wearing too much ethyl-based perfume sat down next to me at a concert. I bloat up to a 5 month pregnant belly just walking past the kettle corn booth. And let's not talk about what happens when food hits the irritated areas of my intestines. We'll leave it at, I want to be home alone for that. I was home alone for that the first time the landlord called to schedule things. I leaned my forehead against the cool ceramic side of the bathtub, listened to the "drip, drip, drip" of the faucet, and immediately decided I didn't care. I pleaded stomach flu, and put off rescheduling for um...well...yes, a whole year.
Home is my refuge. My safe space. My bubble.
I let certain things in, take calculated risks. But...we make sure they aren't airborne risks.
Sawing through drywall would create airborne corn. To settle on the counters. The table. The pots and pans hanging on the wall.
Now, I try not to let corn dictate my life any more than it already needs to by virtue of it's presence. But...this...This was different. It meant a lot more invasion. It meant nowhere to hide for an indeterminable amount of time.
I'm glad to say that we finally dealt with it. Our kind landlord found a lovely, no frills gentleman who looked at the job that I was assured would take nothing less than a full days work, assuming nothing went wrong once they got into the wall, simply nodded and said he could do it. He didn't elaborate. He arrived at noon. I hid in my room as I heard the sawing commence immediately. Not long afterward, the faucet clanged into the bathtub (Which is just outside the door to my room). After about 3 hours, he was spackling up the patch on the wall. And we opted not to paint, since that area is generally covered by a piece of furniture anyways.
I've been corned. But not as badly as it could have been. Not nearly as badly as my nightmares warned me. The worst part is actually the discomfiture I feel inside. The massive emotional reaction I've had to the whole incident. The dread, the memories of whispering responses through cramps as I try to smile politely. The fear of being mid-reaction when he showed up. (It would just be embarrassing. I know, I know. Grow up and deal with it. But...) I lived through similar experiences just fine. So why do they haunt rather than reassure? How could I have let this go on for a year because of a simple fear? (There were plenty of other things to focus on, so it's not like the tub was the only thing on my mind for the past 365 days, but still. You'd think I'd have acted sooner.)
I can't really justify, only acknowledge that corn in particular can wreak havoc with your emotions. It makes a person feel paranoid. Seeking bananas or eggs from a "safe" source can make you feel like you have OCD. Taking great pains to keep the corn free dishes isolated from a few drips of citric acid enhanced tomato sauce or even a few crumbs of enriched flour, doesn't improve that image much. And I don't know about others, but when I take a step back, my precautions always seem ludicrous. But when I let go and try to act normal...I get sick.
Not just "Ugh, that didn't sit right. Hopefully I'll be in for lunch" kind of sick, but an ongoing, slow recovery, frequent backsliding kind of sick.
After a few brushes with trust and food, or just breathing, it seems relatively fair to be paranoid.
It's enough to make you crazy. But, as this incident has reminded me, even when grounded in cold hard truth...fear can't dictate your life.
It's not that I didn't want to repair it. As soon as I realized it couldn't flip all the way off, I got on the phone and the landlord sent a plumber out.
Unfortunately...he couldn't twist the faucet off the wall because it had rusted together with the pipes behind the wall. "No problem," I was assured, "We just go in from behind. It'll take a day, two at the most."
Well...behind that wall was a massive china cabinet, with every piece of china and breakable knick-knack that I had any desire of keeping intact. In the interest of protecting those breakables, the whole thing had been tightly bolted to the wall. Which would take a day or two to reposition by itself.
I'll admit, I hid behind this feat for much longer than necessary.
Why?
The fear of corn.
You see, in order to get to the pipes, they needed to slice through the wall. When they were through, they needed to replaster the wall, patching up the drywall. And there's corn in that.
Cornstarch makes a handy adhesive that doesn't appeal to bugs. (Hm, I wonder why? Maybe they instinctively suspect that it's dangerous?) Interestingly enough, I've heard that there's wheat starch in some drywall compounds, too. Of course, gypsum is the main ingredient. But there's corn, too.
And where there's corn, there's pain.
They'd be filling my house with cornstarch, turning off my water, and taking over the bathroom. While I hung out, smiling politely and asking if there was anything I could do to help besides stay out of the way.
Knowing my reactions to corn, this just built the dread. And the longer it's gone on, the bigger the tower of dread. I huddled in the shadow of it, thinking. I hate missing events. I was too sick to go to the science fair last year. I was miserable through at least one concert, and passed out on my husband's shoulder when a woman wearing too much ethyl-based perfume sat down next to me at a concert. I bloat up to a 5 month pregnant belly just walking past the kettle corn booth. And let's not talk about what happens when food hits the irritated areas of my intestines. We'll leave it at, I want to be home alone for that. I was home alone for that the first time the landlord called to schedule things. I leaned my forehead against the cool ceramic side of the bathtub, listened to the "drip, drip, drip" of the faucet, and immediately decided I didn't care. I pleaded stomach flu, and put off rescheduling for um...well...yes, a whole year.
Home is my refuge. My safe space. My bubble.
I let certain things in, take calculated risks. But...we make sure they aren't airborne risks.
Sawing through drywall would create airborne corn. To settle on the counters. The table. The pots and pans hanging on the wall.
Now, I try not to let corn dictate my life any more than it already needs to by virtue of it's presence. But...this...This was different. It meant a lot more invasion. It meant nowhere to hide for an indeterminable amount of time.
I'm glad to say that we finally dealt with it. Our kind landlord found a lovely, no frills gentleman who looked at the job that I was assured would take nothing less than a full days work, assuming nothing went wrong once they got into the wall, simply nodded and said he could do it. He didn't elaborate. He arrived at noon. I hid in my room as I heard the sawing commence immediately. Not long afterward, the faucet clanged into the bathtub (Which is just outside the door to my room). After about 3 hours, he was spackling up the patch on the wall. And we opted not to paint, since that area is generally covered by a piece of furniture anyways.
I've been corned. But not as badly as it could have been. Not nearly as badly as my nightmares warned me. The worst part is actually the discomfiture I feel inside. The massive emotional reaction I've had to the whole incident. The dread, the memories of whispering responses through cramps as I try to smile politely. The fear of being mid-reaction when he showed up. (It would just be embarrassing. I know, I know. Grow up and deal with it. But...) I lived through similar experiences just fine. So why do they haunt rather than reassure? How could I have let this go on for a year because of a simple fear? (There were plenty of other things to focus on, so it's not like the tub was the only thing on my mind for the past 365 days, but still. You'd think I'd have acted sooner.)
I can't really justify, only acknowledge that corn in particular can wreak havoc with your emotions. It makes a person feel paranoid. Seeking bananas or eggs from a "safe" source can make you feel like you have OCD. Taking great pains to keep the corn free dishes isolated from a few drips of citric acid enhanced tomato sauce or even a few crumbs of enriched flour, doesn't improve that image much. And I don't know about others, but when I take a step back, my precautions always seem ludicrous. But when I let go and try to act normal...I get sick.
Not just "Ugh, that didn't sit right. Hopefully I'll be in for lunch" kind of sick, but an ongoing, slow recovery, frequent backsliding kind of sick.
After a few brushes with trust and food, or just breathing, it seems relatively fair to be paranoid.
It's enough to make you crazy. But, as this incident has reminded me, even when grounded in cold hard truth...fear can't dictate your life.
Saturday, June 26, 2010
Form Letters
Recently a form letter response was posted on one of my forums and I have a few thoughts to share on the subject.
More and more companies are developing formulaic answers to allergy questions. The problem is that there are more than just 8 allergens in the world. And even within those allergens, there is a wide variety of acceptable risk. Until relatively recently, companies who cared could be depended on to respond with a thoughtful, researched response. Other companies could be ferreted out by their lack of response and amusing replies (Such as my favorite: "I can't imagine why there'd be corn in cheese. Where do you buy your cheese?")
Anyways. Here is a typical form letter response from a big box company:
Thank you for taking the time to contact us regarding {product name}. We strive to maintain the highest quality products and appreciate your patronage.
(Company name} labeling declares major allergens (peanuts, soybeans, milk, eggs, fish, crustaceans, tree nuts, and wheat) and we follow the U.S. FDA's regulations. We recognize the serious nature of the allergen issue and we strive to minimize risk.
Both major and minor ingredients of all products, as well as all processing procedures and equipment, are closely scrutinized and all potential allergen issues ... are declared on our labeling.
If a product contains gluten (ie. wheat, oats, barley, etc...) as a major component, we will include it in the ingredient list. For consumers concerned about the presence of trace amounts of gluten, we suggest avoiding products that include natural flavors or spices.
We assure you that strict manufacturing processes and procedures are in place and that all of our manufacturing facilities follow rigid allergen control programs that include staff training, segregation of allergen ingredients, production scheduling, and thorough cleaning and sanitation.
Thank you for your continued support. If we can be of further assistance, please feel free to contact us {Contact info} Sincerely, Company representative
Now, at first glance, this letter seems very helpful. It's well written, professional, and addresses both allergies and gluten. They state that strict manufacturing processes are in place, reassuring the reader that quality and safety are paramount.
Now take a second glance. Note that only the top 8 allergens are addressed, "All potential allergen issues are declared..." This means that they decide, within the guidelines drawn by FDA and FAAN, what exactly is an allergy issue. Without consulting you, or your doctor.
Note also that specific manufacturing processes are not addressed. Is the facility dedicated allergen free? Are there open vats of certain allergens? What are the rigid allergen control programs?
While I have no doubt they are thorough, and present no problem to the average allergic individual, this letter does not specifically address any specific concerns. It's no better than a simple FAQ posted on a website.
As an allergy sufferer, it's my job to weigh my risk benefit ratio in any individual food. I don't have the convenience of farmland, or the money to create a self sustaining agricultural space. This means I do need to rely upon the grocery store to provide my daily caloric needs. Which, in turn, means that I need various companies to give me quality information on their products. I need to know where corn, or gluten, or dairy, or any other specific ingredient, might be in those products. I need to know where certain ingredients are derived. I may need more information on packaging protocols.
And I need my questions to be taken seriously, and answered by an individual who thinks for themselves, not a machine or someone clicking buttons that have been approved by the PR department.
For those new to the world of food allergies responses like the above can be downright dangerous. They give a false sense of security, and although they end with an entreaty to contact the company if there are further questions, they also give the individual a feeling that their answer should have been answered. After all, the company has mysterious, but strict, manufacturing processes. They train their employees. They scrutinize for allergens. And who better to recognize a specific allergen...the individual avoiding it,or the company cooking for a nation of buyers?
Right. The real answer isn't quite the one given.
For those who are new to the world of food allergies, don't be discouraged by canned answers. Ask, and keep asking. Some answers can be found in FAQ and form letters, but many more require an individual answer. And if your allergen isn't found on the top 8, you may need a direct response from someone who works with the product, not just someone in the office.
More and more companies are developing formulaic answers to allergy questions. The problem is that there are more than just 8 allergens in the world. And even within those allergens, there is a wide variety of acceptable risk. Until relatively recently, companies who cared could be depended on to respond with a thoughtful, researched response. Other companies could be ferreted out by their lack of response and amusing replies (Such as my favorite: "I can't imagine why there'd be corn in cheese. Where do you buy your cheese?")
Anyways. Here is a typical form letter response from a big box company:
Thank you for taking the time to contact us regarding {product name}. We strive to maintain the highest quality products and appreciate your patronage.
(Company name} labeling declares major allergens (peanuts, soybeans, milk, eggs, fish, crustaceans, tree nuts, and wheat) and we follow the U.S. FDA's regulations. We recognize the serious nature of the allergen issue and we strive to minimize risk.
Both major and minor ingredients of all products, as well as all processing procedures and equipment, are closely scrutinized and all potential allergen issues ... are declared on our labeling.
If a product contains gluten (ie. wheat, oats, barley, etc...) as a major component, we will include it in the ingredient list. For consumers concerned about the presence of trace amounts of gluten, we suggest avoiding products that include natural flavors or spices.
We assure you that strict manufacturing processes and procedures are in place and that all of our manufacturing facilities follow rigid allergen control programs that include staff training, segregation of allergen ingredients, production scheduling, and thorough cleaning and sanitation.
Thank you for your continued support. If we can be of further assistance, please feel free to contact us {Contact info} Sincerely, Company representative
Now, at first glance, this letter seems very helpful. It's well written, professional, and addresses both allergies and gluten. They state that strict manufacturing processes are in place, reassuring the reader that quality and safety are paramount.
Now take a second glance. Note that only the top 8 allergens are addressed, "All potential allergen issues are declared..." This means that they decide, within the guidelines drawn by FDA and FAAN, what exactly is an allergy issue. Without consulting you, or your doctor.
Note also that specific manufacturing processes are not addressed. Is the facility dedicated allergen free? Are there open vats of certain allergens? What are the rigid allergen control programs?
While I have no doubt they are thorough, and present no problem to the average allergic individual, this letter does not specifically address any specific concerns. It's no better than a simple FAQ posted on a website.
As an allergy sufferer, it's my job to weigh my risk benefit ratio in any individual food. I don't have the convenience of farmland, or the money to create a self sustaining agricultural space. This means I do need to rely upon the grocery store to provide my daily caloric needs. Which, in turn, means that I need various companies to give me quality information on their products. I need to know where corn, or gluten, or dairy, or any other specific ingredient, might be in those products. I need to know where certain ingredients are derived. I may need more information on packaging protocols.
And I need my questions to be taken seriously, and answered by an individual who thinks for themselves, not a machine or someone clicking buttons that have been approved by the PR department.
For those new to the world of food allergies responses like the above can be downright dangerous. They give a false sense of security, and although they end with an entreaty to contact the company if there are further questions, they also give the individual a feeling that their answer should have been answered. After all, the company has mysterious, but strict, manufacturing processes. They train their employees. They scrutinize for allergens. And who better to recognize a specific allergen...the individual avoiding it,or the company cooking for a nation of buyers?
Right. The real answer isn't quite the one given.
For those who are new to the world of food allergies, don't be discouraged by canned answers. Ask, and keep asking. Some answers can be found in FAQ and form letters, but many more require an individual answer. And if your allergen isn't found on the top 8, you may need a direct response from someone who works with the product, not just someone in the office.
Thursday, June 03, 2010
Corn, the Ungreen
Calling corn a sustainable crop is like saying oil is a renewable resource.
I loosely paraphrase this from "The Compassionate Carnivore" written by Catherine Friend. I love that concept. Environmentalists everywhere are jumping on the Cornwagon. Because it's a crop. It can be renewed within a growing season.
They don't think about the fact that it requires thousands of pounds of chemicals to be grown profitably. Or the tons of fossil fuels involved in the growth, transportation and processing of that corn into usable derivatives; then delivering the derivatives somewhere useful.
Corn is only green in the field. And then, it's only green to your eyes. Sure, in moderation it isn't harmful. But in the mass quantities it's grown today, it isn't good for the soil, or the Earth. Add in the GM seeds that are often used to grow conventional corn, the gallons of chemicals used to keep it "healthy" and pest free, and the machinery used to harvest and process it and you have an Earthday nightmare.
Not only is corn unsustainable, it's in everything. If something were to happen en masse to our corn crop, what would Americans eat?
Not corn chips or tacos or corn bread, obviously. No more popcorn.
Pizza makers would scramble to find a new product to dust their boards with. And soda drinkers will be left mixing juice with seltzer.
They may need to squeeze their own juice, too.
Cheese makers would be stuck with bricks of cheese, since the shredded requires an anticaking agent, and many would have to find new packaging that doesn't involve corn starch.
Conventional farmers would lose large quantities of their stock...Which means factory farms would be in serious trouble.
Tylenol, which is encapsulated with cornstarch, would be unavailable.
And you wouldn't be able to drown your headache in beer, which is fermented from corn, either.
Manufacturing would pause, since there's corn in several construction materials.
Soap, shampoo, cleaning products, even producers of hand sanitizers would run into a trouble. There would be nothing to ripen green fruit with, no dextrose for salt.
No toothpaste, no xanthan gum. No baby powder, or diapers, or menstrual pads.
The medication issue would probably be the worst, and all medical grade cleansers would be hoarded in hospitals for sterile procedures.
Of course, the good side would be that without corn, our diet as a nation might improve to the point that the need for certain medications and medical attention might actually drop.
Which would probably be good for the environment, too.
And of course, us uncornies would suddenly have a lot of doors open in the shopping world. :-)
I loosely paraphrase this from "The Compassionate Carnivore" written by Catherine Friend. I love that concept. Environmentalists everywhere are jumping on the Cornwagon. Because it's a crop. It can be renewed within a growing season.
They don't think about the fact that it requires thousands of pounds of chemicals to be grown profitably. Or the tons of fossil fuels involved in the growth, transportation and processing of that corn into usable derivatives; then delivering the derivatives somewhere useful.
Corn is only green in the field. And then, it's only green to your eyes. Sure, in moderation it isn't harmful. But in the mass quantities it's grown today, it isn't good for the soil, or the Earth. Add in the GM seeds that are often used to grow conventional corn, the gallons of chemicals used to keep it "healthy" and pest free, and the machinery used to harvest and process it and you have an Earthday nightmare.
Not only is corn unsustainable, it's in everything. If something were to happen en masse to our corn crop, what would Americans eat?
Not corn chips or tacos or corn bread, obviously. No more popcorn.
Pizza makers would scramble to find a new product to dust their boards with. And soda drinkers will be left mixing juice with seltzer.
They may need to squeeze their own juice, too.
Cheese makers would be stuck with bricks of cheese, since the shredded requires an anticaking agent, and many would have to find new packaging that doesn't involve corn starch.
Conventional farmers would lose large quantities of their stock...Which means factory farms would be in serious trouble.
Tylenol, which is encapsulated with cornstarch, would be unavailable.
And you wouldn't be able to drown your headache in beer, which is fermented from corn, either.
Manufacturing would pause, since there's corn in several construction materials.
Soap, shampoo, cleaning products, even producers of hand sanitizers would run into a trouble. There would be nothing to ripen green fruit with, no dextrose for salt.
No toothpaste, no xanthan gum. No baby powder, or diapers, or menstrual pads.
The medication issue would probably be the worst, and all medical grade cleansers would be hoarded in hospitals for sterile procedures.
Of course, the good side would be that without corn, our diet as a nation might improve to the point that the need for certain medications and medical attention might actually drop.
Which would probably be good for the environment, too.
And of course, us uncornies would suddenly have a lot of doors open in the shopping world. :-)
Sunday, May 16, 2010
Sometimes, as parents, we find ourselves making difficult decisions. Having to choose between buying our kids things that will make them happy, and keeping to a budget.
Of course, as adults we know they don't need extra toys. Or candy. Or other treats.
But everyone else seems to have them, and all the other parents say "Oh, well, it's only $5, $10, $50..."
Every little bit adds up.
Although it's hard to say no sometimes, I'm proud of my dd.
Just the other night she was asking something, and she smiled and said "Mommy, I think we have just the right amount of money. Because we have enough money for rent, and to eat every day and to buy treats once in awhile. But not every day, like some people. Because that's not healthy."
I'm glad that she doesn't feel deprived.
As I look around our home I see so many things I want to upgrade. Replace. Flat out get rid of! But I pause. Practicality sets in. Anything that I would want to replace in a year, needs to stay. If it's reparable, it stays. It doesn't always get tidied up, or repaired in a timely manner, but it's relatively clean and not unsafe.
I resent our expensive allergy friendly diet, and sometimes yearn for blue box mac and cheese, frozen dinners, the ease of a drive through happy meal.
Then I look around at the world. The first glance, of course, makes me want to upgrade more. Get rid of the old sheets! The plastic toys that look used. The chairs with tattered seatcovers. The clothes that I've owned for more than a year. Go out to a restaurant, if for no other reason than so my kids know what a happy meal toy is.
The second glance is what gives me pause. The landfills are overflowing. As I toss abandoned fast food coffee cups and grease stained bags that end up in our gutter in the trash, I see a lot of overflowing oversized trashcans by the curb come trashday, and although more than half the driveways sport recycle bins, it's far fewer than 90%. And they're rarely overflowing.
There's an island of plastic floating in the middle of the Pacific ocean.
Polar Bears in the arctic, who have never heard an airplane or seen an automobile, have discernible levels of plastics and pesticides in their blood stream.
Factory farms are steadily crowding out family farms, and humane (animal) farming is struggling to remain a viable resource in any community. One quarter of American meals are eaten in restaurants. 2/3 of the remaining meals are take out or pre-prepared. The remaining quarter or so of meals are prepared using exotic techniques such as spreading condiments onto sandwich bread or microwaving vegetables.
There's a pipe spewing hundreds of thousands of gallons of crude oil into the Gulf Coast waters as I type.
It's not that the second glance makes me want to move into a redwood tree like some kind of 60's fanatic (although I remember reading "My Side of the Mountain and dreaming about it.) but it does make me want to...either save the world or go back to bed and stay there.
And how can we help the world? By living smaller. Experts (such as the Sierra Club and National Wildlife Fed, and the Slow Food Movement, and Whole Foods) suggest paying attention to where your dollars go.
With a tight budget, I do that.
Avoid unnecessary packaging. Avoid excess waste.
Again, from a budgeting perspective, this is paramount.
Don't buy things you don't need. And keep the things you own in good condition, so you can reuse them or pass them on.
As someone without a lot of money to spread around, I do this. Garage sales never seem to work for us, and since I rarely have much extra cash to donate where I want to I assuage my conscience by sending used goods to places they can be put to the best use...if not a friend or family member, to a local job rehab center or the Salvation Army.
Reduce. Reuse. Recycle. Respect our resources.
When I'm tempted to buy junk, or feeling bad that I can't, I remind myself of those 4 Rs.
Like my daughter, I'm glad we're 'poor'. It's forced us to make hard decisions, to focus on what really matters, and to lighten the imprint we make on the Earth. Unlike her, I'm surprised that my kids seem to have a greater appreciation for their toys. They pull out the Barbies and create elaborate games. Other parents look askance when I talk about the intricate Littlest Pet Shop set up the girls were fighting over.
Of course, maybe it's healthier to get outside and ride a bike. But when that's not feasible, I'd rather they have a box of scrap paper to build origami cranes, or a closet full of board games, or a plastic tub of plastic animals to turn to than a TV to turn on. (yes, we own a TV. No, it is not hooked up to cable.)
And I'm really surprised to hear the reinforcement come from her mouth. She's glad we can't afford too many treats? For sweets in lunches every day? She's glad I don't buy her too many toys?
I'm sure I could do a better job at being green, and raising green kids. I could walk more, or buy a bike. I could make a more concerted effort to get to the farmer's market. And I do intend to work on continuing to lessen my carbon print. But for now, I'm going to be happy that our budget keeps us (somewhat) green. And my kids know it.
I just hope that she continues to see the positive...and not resent the sacrifices.
Of course, as adults we know they don't need extra toys. Or candy. Or other treats.
But everyone else seems to have them, and all the other parents say "Oh, well, it's only $5, $10, $50..."
Every little bit adds up.
Although it's hard to say no sometimes, I'm proud of my dd.
Just the other night she was asking something, and she smiled and said "Mommy, I think we have just the right amount of money. Because we have enough money for rent, and to eat every day and to buy treats once in awhile. But not every day, like some people. Because that's not healthy."
I'm glad that she doesn't feel deprived.
As I look around our home I see so many things I want to upgrade. Replace. Flat out get rid of! But I pause. Practicality sets in. Anything that I would want to replace in a year, needs to stay. If it's reparable, it stays. It doesn't always get tidied up, or repaired in a timely manner, but it's relatively clean and not unsafe.
I resent our expensive allergy friendly diet, and sometimes yearn for blue box mac and cheese, frozen dinners, the ease of a drive through happy meal.
Then I look around at the world. The first glance, of course, makes me want to upgrade more. Get rid of the old sheets! The plastic toys that look used. The chairs with tattered seatcovers. The clothes that I've owned for more than a year. Go out to a restaurant, if for no other reason than so my kids know what a happy meal toy is.
The second glance is what gives me pause. The landfills are overflowing. As I toss abandoned fast food coffee cups and grease stained bags that end up in our gutter in the trash, I see a lot of overflowing oversized trashcans by the curb come trashday, and although more than half the driveways sport recycle bins, it's far fewer than 90%. And they're rarely overflowing.
There's an island of plastic floating in the middle of the Pacific ocean.
Polar Bears in the arctic, who have never heard an airplane or seen an automobile, have discernible levels of plastics and pesticides in their blood stream.
Factory farms are steadily crowding out family farms, and humane (animal) farming is struggling to remain a viable resource in any community. One quarter of American meals are eaten in restaurants. 2/3 of the remaining meals are take out or pre-prepared. The remaining quarter or so of meals are prepared using exotic techniques such as spreading condiments onto sandwich bread or microwaving vegetables.
There's a pipe spewing hundreds of thousands of gallons of crude oil into the Gulf Coast waters as I type.
It's not that the second glance makes me want to move into a redwood tree like some kind of 60's fanatic (although I remember reading "My Side of the Mountain and dreaming about it.) but it does make me want to...either save the world or go back to bed and stay there.
And how can we help the world? By living smaller. Experts (such as the Sierra Club and National Wildlife Fed, and the Slow Food Movement, and Whole Foods) suggest paying attention to where your dollars go.
With a tight budget, I do that.
Avoid unnecessary packaging. Avoid excess waste.
Again, from a budgeting perspective, this is paramount.
Don't buy things you don't need. And keep the things you own in good condition, so you can reuse them or pass them on.
As someone without a lot of money to spread around, I do this. Garage sales never seem to work for us, and since I rarely have much extra cash to donate where I want to I assuage my conscience by sending used goods to places they can be put to the best use...if not a friend or family member, to a local job rehab center or the Salvation Army.
Reduce. Reuse. Recycle. Respect our resources.
When I'm tempted to buy junk, or feeling bad that I can't, I remind myself of those 4 Rs.
Like my daughter, I'm glad we're 'poor'. It's forced us to make hard decisions, to focus on what really matters, and to lighten the imprint we make on the Earth. Unlike her, I'm surprised that my kids seem to have a greater appreciation for their toys. They pull out the Barbies and create elaborate games. Other parents look askance when I talk about the intricate Littlest Pet Shop set up the girls were fighting over.
Of course, maybe it's healthier to get outside and ride a bike. But when that's not feasible, I'd rather they have a box of scrap paper to build origami cranes, or a closet full of board games, or a plastic tub of plastic animals to turn to than a TV to turn on. (yes, we own a TV. No, it is not hooked up to cable.)
And I'm really surprised to hear the reinforcement come from her mouth. She's glad we can't afford too many treats? For sweets in lunches every day? She's glad I don't buy her too many toys?
I'm sure I could do a better job at being green, and raising green kids. I could walk more, or buy a bike. I could make a more concerted effort to get to the farmer's market. And I do intend to work on continuing to lessen my carbon print. But for now, I'm going to be happy that our budget keeps us (somewhat) green. And my kids know it.
I just hope that she continues to see the positive...and not resent the sacrifices.
Wednesday, May 12, 2010
There's corn in that. There's corn in that, too.
And that. And that. And...oh, forget it!
Sometimes, a corn allergy feels especially difficult because of the prevalence of corn derivatives used in products. I've always felt that we need full disclosure on labels. Sure, it's hard for big corporations. But in our society, we can't have a big enough garden or keep chickens and beef cattle in our back yard. City ordinances and space constraints prevent us providing our own unique meal needs from scratch. We need to rely on companies to provide our basics, as well as our treats.
This means we need to be able to depend on a label, both for food and medications.
There is now an online petition to help build support for adding corn to the required to be labeled list. If you would like to participate, please click here and sign your support! Thanks!
And that. And that. And...oh, forget it!
Sometimes, a corn allergy feels especially difficult because of the prevalence of corn derivatives used in products. I've always felt that we need full disclosure on labels. Sure, it's hard for big corporations. But in our society, we can't have a big enough garden or keep chickens and beef cattle in our back yard. City ordinances and space constraints prevent us providing our own unique meal needs from scratch. We need to rely on companies to provide our basics, as well as our treats.
This means we need to be able to depend on a label, both for food and medications.
There is now an online petition to help build support for adding corn to the required to be labeled list. If you would like to participate, please click here and sign your support! Thanks!
Saturday, May 01, 2010
When cows are fed with corn instead of grass, they produce more of the harmful toxin, e. coli. This is caused by improper breakdown of the starches, since cattle are designed by nature to chomp grass not leftover grains. Of course, when they do eat a primarily grain fed diet, their flesh is better marbled with fat...so it appears more desirable to the decadent meat eaters.
(I wonder if part of the reason unhealthy meat appeals to us is that somewhere deep inside our primitive selves remember that we aren't supposed to destroy healthy, strong, vital animals...we are supposed to strengthen other species by taking down the weak and preying on the less healthy.)
I also wonder if the same is true for human diet? Maybe not so much over abundance of E Coli (we might notice that?) but other inhospitable organisms. Like the kinds that may (or may not) be linked to Crohns disease, and other Inflammatory Bowel Disease. Or simply an overgrowth of bad bacteria that leads to an epidemic of IBS?
Of course, I'm not a doctor. The two probably aren't related. A professional would surely tell you...it's just stress. Maybe what we really should ask is who's stress matters most...ours, or that of the animals we eat?
(I wonder if part of the reason unhealthy meat appeals to us is that somewhere deep inside our primitive selves remember that we aren't supposed to destroy healthy, strong, vital animals...we are supposed to strengthen other species by taking down the weak and preying on the less healthy.)
I also wonder if the same is true for human diet? Maybe not so much over abundance of E Coli (we might notice that?) but other inhospitable organisms. Like the kinds that may (or may not) be linked to Crohns disease, and other Inflammatory Bowel Disease. Or simply an overgrowth of bad bacteria that leads to an epidemic of IBS?
Of course, I'm not a doctor. The two probably aren't related. A professional would surely tell you...it's just stress. Maybe what we really should ask is who's stress matters most...ours, or that of the animals we eat?
Saturday, April 17, 2010
The Gluten Free Fad
For the past few years the gluten free bubble has been filling, quickly. There's been increased demand for Gluten free foods, awareness has skyrocketed, and offerings increased.
People have used to gluten free diet to lose weight, treat autism, improve depression, and cure a range of digestive issues. Some even latched onto it as the next great health phenomenon. Gluten free was to the 2000's as granola was to the 70's.
But research shows, or claims to show, that the fad is slowly fading. The masses find a strict gluten free diet difficult to adhere to, and the concept of 'simply' removing a dietary mainstay is proving not so simple. Choosing gluten free products can be confusing and frustrating. Substitutions that are high in fat and starches and artificial substances are gumming up the "healthy, natural" niche that gluten free used to fall in.
It makes sense that people who found success in the GF lifestyle because they were opting for whole foods, rather than prepackaged calories, are now finding that a whole food diet including some gluten grains is perfectly acceptable for them, in fact may work better than one full of gluten free pastries. For those who jumped on the bandwagon simply because it was a bandwagon, the next new trend is coming (whatever it is) and they'll happily leave gluten free labels by the wayside. And those who were buying gluten free simply because of the China dog food scandal are relaxing, realizing that gluten as an additive and gluten as a naturally occurring substance are two very different things.
Meanwhile, those who are gluten free out of medical necessity are both revelling in the widened selection in the marketplace, brought about by the gluten free trend, and wading through the increased muddy definitions of "gluten free". When it was just a health requirement, the concept was relatively easy. Either it was gluten free, or not. Products that took the time to proclaim themselves gluten free were generally aware of the concerns and requirements. Products that were naturally gluten free were, well, naturally gluten free.
Times have changed. Food producers recognize that the general masses, the majority of individuals that they are trying to appeal to, don't care if their gluten free food is tested or not. They don't care about cross contamination. So they are adjusting their packaging or recipes accordingly. The savvy gluten free eater needs to discriminate between gluten free food, and food that doesn't contain gluten ingredients but may have been exposed to some flour sediment. (Which contains gluten) This brings about a lot of debates. "That's not gluten free!" "Oh, but it is!"
No wonder the gluten free fad is fading. For the sake of ease, and variety, a person following any diet for medical reasons needs to not only understand their own dietary restrictions, but the reasons surrounding why different people might follow a similar diet. And how strict they need to be. Unless you see clear, definitive results and have a supportive network of friends and family, a restrictive diet is too confining. And the complications and expense simply aren't worth it for the sake of a fad.
The flip side is that the fad reputation gives those of us following the diet religiously for the sake of their own health a bad name. Those following the fad can cheat, and even give up. Those of us who need to be strict, need to be strict. Which is hard on the host as well as the guest or customer. Hopefully as the fad fades, awareness will continue to increase, and we will get truth in labeling...not just a few isolated ingredients deemed dangerous by the government, but any ingredient...because the statistically insignificant strict, picky eaters count.
People have used to gluten free diet to lose weight, treat autism, improve depression, and cure a range of digestive issues. Some even latched onto it as the next great health phenomenon. Gluten free was to the 2000's as granola was to the 70's.
But research shows, or claims to show, that the fad is slowly fading. The masses find a strict gluten free diet difficult to adhere to, and the concept of 'simply' removing a dietary mainstay is proving not so simple. Choosing gluten free products can be confusing and frustrating. Substitutions that are high in fat and starches and artificial substances are gumming up the "healthy, natural" niche that gluten free used to fall in.
It makes sense that people who found success in the GF lifestyle because they were opting for whole foods, rather than prepackaged calories, are now finding that a whole food diet including some gluten grains is perfectly acceptable for them, in fact may work better than one full of gluten free pastries. For those who jumped on the bandwagon simply because it was a bandwagon, the next new trend is coming (whatever it is) and they'll happily leave gluten free labels by the wayside. And those who were buying gluten free simply because of the China dog food scandal are relaxing, realizing that gluten as an additive and gluten as a naturally occurring substance are two very different things.
Meanwhile, those who are gluten free out of medical necessity are both revelling in the widened selection in the marketplace, brought about by the gluten free trend, and wading through the increased muddy definitions of "gluten free". When it was just a health requirement, the concept was relatively easy. Either it was gluten free, or not. Products that took the time to proclaim themselves gluten free were generally aware of the concerns and requirements. Products that were naturally gluten free were, well, naturally gluten free.
Times have changed. Food producers recognize that the general masses, the majority of individuals that they are trying to appeal to, don't care if their gluten free food is tested or not. They don't care about cross contamination. So they are adjusting their packaging or recipes accordingly. The savvy gluten free eater needs to discriminate between gluten free food, and food that doesn't contain gluten ingredients but may have been exposed to some flour sediment. (Which contains gluten) This brings about a lot of debates. "That's not gluten free!" "Oh, but it is!"
No wonder the gluten free fad is fading. For the sake of ease, and variety, a person following any diet for medical reasons needs to not only understand their own dietary restrictions, but the reasons surrounding why different people might follow a similar diet. And how strict they need to be. Unless you see clear, definitive results and have a supportive network of friends and family, a restrictive diet is too confining. And the complications and expense simply aren't worth it for the sake of a fad.
The flip side is that the fad reputation gives those of us following the diet religiously for the sake of their own health a bad name. Those following the fad can cheat, and even give up. Those of us who need to be strict, need to be strict. Which is hard on the host as well as the guest or customer. Hopefully as the fad fades, awareness will continue to increase, and we will get truth in labeling...not just a few isolated ingredients deemed dangerous by the government, but any ingredient...because the statistically insignificant strict, picky eaters count.
Sunday, March 28, 2010
Earth Hour
Last night, for what I think was the third time ever, we took part in Earth Hour. The time between 8:30pm and 9:30pm when the whole world turns off all lights and nonessential appliances (such as the energy-sapping computer I'm using right now) and televises their dedication to energy preservation.
The televised part confused Bumblebee, so we stopped watching early on.
However, the girls were happy to light their room by candlelight as they tried to fall asleep without their friendly hall-light shining through the door.
Mr. Violets and I enjoyed the quiet, the flickering candles, the chance to simply sit. Okay, fine. I read by candlelight. And he watched until he fell asleep.
But it was oddly rejuvenating.
It felt good to remember that plugging in is a privilige we've come to take for granted. Even the ready access we have to literature is a blessing that is relatively recent in the grand scheme of things.
Hot water, clothes washers and dryers, computers and fans /9not to mention heaters) are all the benefit of technology. But with technology comes responsibility, and Earth Hour gave us a chance to remember that we've gotten lazy with our lights. It's time to reconnect, to the Earth, and make sure our tread is light.
The televised part confused Bumblebee, so we stopped watching early on.
However, the girls were happy to light their room by candlelight as they tried to fall asleep without their friendly hall-light shining through the door.
Mr. Violets and I enjoyed the quiet, the flickering candles, the chance to simply sit. Okay, fine. I read by candlelight. And he watched until he fell asleep.
But it was oddly rejuvenating.
It felt good to remember that plugging in is a privilige we've come to take for granted. Even the ready access we have to literature is a blessing that is relatively recent in the grand scheme of things.
Hot water, clothes washers and dryers, computers and fans /9not to mention heaters) are all the benefit of technology. But with technology comes responsibility, and Earth Hour gave us a chance to remember that we've gotten lazy with our lights. It's time to reconnect, to the Earth, and make sure our tread is light.
Recently, I requested copies of our medical history. Instead of just sending them to our new doctors, I asked for an extra copy to be sent here, to us. My intention is to keep a copy in my own files, so that I know exactly what the new doctors have on file, and I admit I was a bit curious, myself, to see something more than the simple test results that get forwarded to me.
In other words...what notes do the doctors make to themselves?
If I was expecting to find big, bold declarations of "OMG, corn is evil! This woman must never be exposed to corn products! Or gluten!" in decisive, red warning letters, I was sorely disappointed. Corn gets a brief mention, and is followed up in several mispellings. In fact, at one point it states that I'm allergic to "cort- meds" instead of corn in meds. There is a cataloguing on symptoms that wane and wax, a lot of "symptomatic relief through dietary measures" and "told to continue".
Maybe my diagnosis really is "interesting, very interesting." (Just kidding. It's actually "Probably stress related, but...")
I found it fascinating that while the corn, and the gluten, were in there, and validated...they seem such a small, insignificant portion of my medical record and my kids medical records. There's much more in there on discussion about vaccines, or the fact that I actually ask questions about medical treatments or diagnosis (I also found that the question asking does not necessarily go over well.)
I also found in there some comments that I haven't seen. Some blood test results that the doctors made note they wanted to keep an eye on, while they reassured me that the results were meaningless and they don't need to follow up. I'm not sure how to address that with the next doctor.
All fascination aside, it's left me thinking about food and diet and doctors. How the AMA and various cancer societies, and even certain medical groups (*ahem*Kaiser*ahem*) have amassed campaigns to raise awareness about the important link between diet and health. How questions about food seem to be one of the first that I'm asked when I present a digestive complaint to either my own dr, or the children's pediatrician. And yet, in the grand medical scheme f things, that dietary journey really plays a small part in their thinking process.
My life has changed dramatically since giving up corn. Pain is no longer consuming, although the threat of an emptying stomach lingers. I've given up restaurants, and discovered that movie theatres make me itchy and make it difficult to breathe. Dinner, lunches, parties, baking have all become challenges. Simple social situations are obstacles in that the ice breaking meal must be avoided. There are challenges in self consciousness, assertiveness, courtesy, and will power. There's lack of spontaneity and the fear of food (ingredients, suppliers, labels) and how to balance living with living healthfully, There is obsessive compulsive label reading, often followed by company inquiries.
And that all boils down to "advised to continue as it seems to help."
I've learned to identify corn derivatives by monikers like dextrose, cellulose, and citric acid. I've learned to trace potential contamination from corn by processing lines, packaging and ingredients like "juice". I've spent hours on the phone with drug companies.
I'm not sure what this feeling it leaves is. Part is self doubt (although I can conjure the frustration I felt chained to the bathroom a few years ago after accidentally switching toothpaste with my husband.) Part is frustration..."All you've had to offer me the last few years is 'be more strict with your diet, read labels better' and 'wait and see' so I've been driving myself batty trying to comply and the notes boil down to 'huh, probably stress, but diet helps?" as if it's a secondary afterthought?
The Celiac part isn't even in there. The shaky shivers and projectile vomiting is recorded as if I were trying to be noncompliant during a ct scan. (In hindsight, the drink was flavored.) The whole arm rash that followed the contrast dye isn't in there either. I never did learn whether that was a corn reaction or some sort of iodine reaction.
Perhaps I do complain too much. But why do I end up losing weight and passing out if I ignore my symptoms and try to live my life the way others seem to live theirs? Volunteering freely, walking a mile or more without napping before and after, showing up to stand on their feet even with a cold? Why can't I breathe when trying to help with paper mache? And why do I spend a month cuddling with a heating pad after trying to ignore airborn particles? Or accidentally ingesting "real" corn derivatives? Why doesn't pretending it's just my imagination banish it all to my imagination, especially if and when it's annoying not scaring me? (And I do follow that path every now and then...am I concerned? Not really. Mostly annoyed and a little bit lost. I want to be there, I want to be dependable. But then, when I feel most confident, I'm floored. Usually it's traceable to my getting cocky and missing some dumb ingredient because I was feeling great. And then it's a painful trip back up to confidence.)
Am I just crazy? Maybe. But then a lot of other people are crazy, too. (And they seem to be following my same pattern.) Maybe it is stress. Stress plays such an intricate role in everyone's life these days. And dietary restrictions are certainly stressful. But ignoring them leads to more stress. (Who can I call to pick up the kids? Maybe I'll be okay to drive. Or, um, maybe not.)
Sometimes I wish I had the means to follow up on research. To put all these pieces together and make something meaningful to bring to society and say "Look. What we're doing is wrong. Look, people are suffering. Look. There's an answer. And it's not a pill." Other days I wish there was a simple pill.
At any rate, I see why corn allergy isn't headline news. It's taking a backseat to other conditions the medical community tries to rule out. It's not until a gung-ho professional starts to make connections, and see that medical equipment and procedures really are affected by the supplies and the ingredients used in treatments that studies will be done. How many people will be dismissed? Will continue to fight to follow that tiny thread of light through the dark maze of dietary questions? Corn is just a kernel to most doctors. For us, it's already popped.
In other words...what notes do the doctors make to themselves?
If I was expecting to find big, bold declarations of "OMG, corn is evil! This woman must never be exposed to corn products! Or gluten!" in decisive, red warning letters, I was sorely disappointed. Corn gets a brief mention, and is followed up in several mispellings. In fact, at one point it states that I'm allergic to "cort- meds" instead of corn in meds. There is a cataloguing on symptoms that wane and wax, a lot of "symptomatic relief through dietary measures" and "told to continue".
Maybe my diagnosis really is "interesting, very interesting." (Just kidding. It's actually "Probably stress related, but...")
I found it fascinating that while the corn, and the gluten, were in there, and validated...they seem such a small, insignificant portion of my medical record and my kids medical records. There's much more in there on discussion about vaccines, or the fact that I actually ask questions about medical treatments or diagnosis (I also found that the question asking does not necessarily go over well.)
I also found in there some comments that I haven't seen. Some blood test results that the doctors made note they wanted to keep an eye on, while they reassured me that the results were meaningless and they don't need to follow up. I'm not sure how to address that with the next doctor.
All fascination aside, it's left me thinking about food and diet and doctors. How the AMA and various cancer societies, and even certain medical groups (*ahem*Kaiser*ahem*) have amassed campaigns to raise awareness about the important link between diet and health. How questions about food seem to be one of the first that I'm asked when I present a digestive complaint to either my own dr, or the children's pediatrician. And yet, in the grand medical scheme f things, that dietary journey really plays a small part in their thinking process.
My life has changed dramatically since giving up corn. Pain is no longer consuming, although the threat of an emptying stomach lingers. I've given up restaurants, and discovered that movie theatres make me itchy and make it difficult to breathe. Dinner, lunches, parties, baking have all become challenges. Simple social situations are obstacles in that the ice breaking meal must be avoided. There are challenges in self consciousness, assertiveness, courtesy, and will power. There's lack of spontaneity and the fear of food (ingredients, suppliers, labels) and how to balance living with living healthfully, There is obsessive compulsive label reading, often followed by company inquiries.
And that all boils down to "advised to continue as it seems to help."
I've learned to identify corn derivatives by monikers like dextrose, cellulose, and citric acid. I've learned to trace potential contamination from corn by processing lines, packaging and ingredients like "juice". I've spent hours on the phone with drug companies.
I'm not sure what this feeling it leaves is. Part is self doubt (although I can conjure the frustration I felt chained to the bathroom a few years ago after accidentally switching toothpaste with my husband.) Part is frustration..."All you've had to offer me the last few years is 'be more strict with your diet, read labels better' and 'wait and see' so I've been driving myself batty trying to comply and the notes boil down to 'huh, probably stress, but diet helps?" as if it's a secondary afterthought?
The Celiac part isn't even in there. The shaky shivers and projectile vomiting is recorded as if I were trying to be noncompliant during a ct scan. (In hindsight, the drink was flavored.) The whole arm rash that followed the contrast dye isn't in there either. I never did learn whether that was a corn reaction or some sort of iodine reaction.
Perhaps I do complain too much. But why do I end up losing weight and passing out if I ignore my symptoms and try to live my life the way others seem to live theirs? Volunteering freely, walking a mile or more without napping before and after, showing up to stand on their feet even with a cold? Why can't I breathe when trying to help with paper mache? And why do I spend a month cuddling with a heating pad after trying to ignore airborn particles? Or accidentally ingesting "real" corn derivatives? Why doesn't pretending it's just my imagination banish it all to my imagination, especially if and when it's annoying not scaring me? (And I do follow that path every now and then...am I concerned? Not really. Mostly annoyed and a little bit lost. I want to be there, I want to be dependable. But then, when I feel most confident, I'm floored. Usually it's traceable to my getting cocky and missing some dumb ingredient because I was feeling great. And then it's a painful trip back up to confidence.)
Am I just crazy? Maybe. But then a lot of other people are crazy, too. (And they seem to be following my same pattern.) Maybe it is stress. Stress plays such an intricate role in everyone's life these days. And dietary restrictions are certainly stressful. But ignoring them leads to more stress. (Who can I call to pick up the kids? Maybe I'll be okay to drive. Or, um, maybe not.)
Sometimes I wish I had the means to follow up on research. To put all these pieces together and make something meaningful to bring to society and say "Look. What we're doing is wrong. Look, people are suffering. Look. There's an answer. And it's not a pill." Other days I wish there was a simple pill.
At any rate, I see why corn allergy isn't headline news. It's taking a backseat to other conditions the medical community tries to rule out. It's not until a gung-ho professional starts to make connections, and see that medical equipment and procedures really are affected by the supplies and the ingredients used in treatments that studies will be done. How many people will be dismissed? Will continue to fight to follow that tiny thread of light through the dark maze of dietary questions? Corn is just a kernel to most doctors. For us, it's already popped.
Passover and Gluten
They say there are two things in this world that must never be discussed over a friendly dinner. And those are religion and politics.
Unfortunately, when it comes to food, religion sometimes is intricately linked with what one desires to ingest.
In fact, Passover is right around the corner. And with the Passover, comes a seder. And at every seder is a very important rule. Throughout Passover, strict Judaic law prohibits the ingestion of any fermentable grains. The exception to this rule is matzo, grown, harvested and treated in strict accordance with Old Testament laws.
Since traditional grains are forbidden during the Passover, many people presume that all Passover foods are gluten free. This is, unfortunately, not true.
While many Kosher for Passover items are, indeed, gluten free, anything containing Matzo or Matzo flour is not. Macaroons, safe. Matzo balls, not safe.
There is some discussion about whether or not gluten is found in matzo meal. This debate often crosses into religious territory. There are individuals who believe that for the sake of unity, they must consume a small amount of Matzo during the Passover seder. They feel that during the processing of the matzo meal, and the Rabbi's blessing, the gluten is essentially removed from the grain. Now, it may be that in faith G-d will bless the individual and help their body to avoid damage from a small amount of gluten grain taken solely as a religious ritual. It may also be that a small amount of gluten grain once a year is not enough to cause permanent damage to an individual who is otherwise extremely cautious.
However, the matzo meal itself remains a gluten grain. And as such, it poses a risk to those with Celiac disease, and anyone with a wheat allergy.
On the other hand, it's corn free for the uncorny wheat eater.
The corn free celiac will be happy to know that most kosher-for-passover items are safe for cosumption. The ingredient list should be scrutinized for the words "matzo" or "matzo meal", both of which must be avoided. There may be a few organizations which do permit corn derivatives in their products, under the assumption that to avoid corn completely only for Passover is an unrealistic endeavor. However, they will state the source if corn is, indeed, used, out of respect for the strict observers.
For most traditional wheat and corn ingredients, potato is used as a starch source. Almond meal is also used freely in Passover foods, so if there is a nut allergy in the house read carefully for that, too.
Kosher is not allergy friendly. Nor is it a health conscious certification. My kids were disappointed to see that of all the kosher for passover candy displayed, not one was free of artificial coloring and flavoring. It's also worth noting that many of the products are full of sulfites. Kosher products can be a wonderful addition to a food allergy family, but only in that grains are clearly listed on Passover products (as is soy, which is also forbidden during Passover) and milk is also clearly listed, since milk and meat cannot be consumed at the same time.
Unfortunately, when it comes to food, religion sometimes is intricately linked with what one desires to ingest.
In fact, Passover is right around the corner. And with the Passover, comes a seder. And at every seder is a very important rule. Throughout Passover, strict Judaic law prohibits the ingestion of any fermentable grains. The exception to this rule is matzo, grown, harvested and treated in strict accordance with Old Testament laws.
Since traditional grains are forbidden during the Passover, many people presume that all Passover foods are gluten free. This is, unfortunately, not true.
While many Kosher for Passover items are, indeed, gluten free, anything containing Matzo or Matzo flour is not. Macaroons, safe. Matzo balls, not safe.
There is some discussion about whether or not gluten is found in matzo meal. This debate often crosses into religious territory. There are individuals who believe that for the sake of unity, they must consume a small amount of Matzo during the Passover seder. They feel that during the processing of the matzo meal, and the Rabbi's blessing, the gluten is essentially removed from the grain. Now, it may be that in faith G-d will bless the individual and help their body to avoid damage from a small amount of gluten grain taken solely as a religious ritual. It may also be that a small amount of gluten grain once a year is not enough to cause permanent damage to an individual who is otherwise extremely cautious.
However, the matzo meal itself remains a gluten grain. And as such, it poses a risk to those with Celiac disease, and anyone with a wheat allergy.
On the other hand, it's corn free for the uncorny wheat eater.
The corn free celiac will be happy to know that most kosher-for-passover items are safe for cosumption. The ingredient list should be scrutinized for the words "matzo" or "matzo meal", both of which must be avoided. There may be a few organizations which do permit corn derivatives in their products, under the assumption that to avoid corn completely only for Passover is an unrealistic endeavor. However, they will state the source if corn is, indeed, used, out of respect for the strict observers.
For most traditional wheat and corn ingredients, potato is used as a starch source. Almond meal is also used freely in Passover foods, so if there is a nut allergy in the house read carefully for that, too.
Kosher is not allergy friendly. Nor is it a health conscious certification. My kids were disappointed to see that of all the kosher for passover candy displayed, not one was free of artificial coloring and flavoring. It's also worth noting that many of the products are full of sulfites. Kosher products can be a wonderful addition to a food allergy family, but only in that grains are clearly listed on Passover products (as is soy, which is also forbidden during Passover) and milk is also clearly listed, since milk and meat cannot be consumed at the same time.
Tuesday, March 16, 2010
Planning a Gluten Free Birthday Party
It's that time of year again. The crazies set in, and on top of all the science experiments, girl scout cookies, homework, classes, and "finally, the big holidays are over, let's put as much focus as we can on the little ones" projects...we have two birthdays to celebrate!
With food allergies and chronic health woes, the birthday parties are more challenging than one might suspect! Once upon a time, we started birthday talk with "What will we serve?" We dreamt of cake, we agonized over appetizers. Now...the food aspect can quickly overwhelm us. What will we serve? What will the guests be willing to eat? How will it taste? How much will it cost? Do we dare even try to feed them? (And should we warn them about the grapeseed oil and tapioca starch?)
Nevermind all that. We've found a much better approach. The kids have informed me that they hate the food aspect of parties. They never even liked "real" cake that much anyways, and even though it makes their friends crazy, their friends don't care much about cake they only expect it because cake and birthday parties are synonymous. With that in mind, we now start our plans with a theme. This year, Bumblebee chose a garden theme. Of course, her birthday's in March and one year it threatened to snow for the first time in over 20 years...so this was just another excuse for us to pull out the creativity caps and plan a birthday party to remember!
The first step is to design invitations. She wanted to hand out invitations this year, instead of just emailing them. So we pulled out my scrapbooking papers, and traced out hexagons, added petals and cut them out. She wrote the party details on each petal, with a big "It's a Party!" in the middle, and we folded the petals down to a pretty flower packet.
We started the party with a craft. She didn't like the planters we found in our price range, and the birdhouse kits didn't look very practical. But she fell in love with the little "Everything Grows with Love" signs, and then I stumbled on some bug themed magnets on clearance at Target. Cost: $6 for 2 crafts for a dozen kids. (Plus extra glue and paintbrushes)
After crafts, it was time to really get the kids excited. Besides, our favorite part of any birthday party we throw is the treasure hunt. (and who doesn't like hidden treasure?) I told the girls that I'd invited a garden fairy to give them some treasures, but she couldn't be found. She'd left a note leading them to the first clue...which was another note. All in all, there were 12 clues...leading them around the house and neighborhood in search of Gardenia. The final note apologized for missing them, but there was a fairy emergency and told them that the treasure could be found in the rose garden. Since it hadn't been there earlier in the hunt...it had a nice, magical touch. The treasure was a little gardening kit and jumprope, and this was the big party expenditure. (Actually, it was again quite inexpensive...I believe the treasure cost was around $16 total.)
The hunt left everyone starving. The food was definitely not your classic party fare, but we had planned a little carrot patch out of hummus dip which was deemed adorable and although the kids didn't eat much hummus, the carrots and even a few heads of broccoli vanished. We also put out some sunny orange slices and apple wedges, which disappeared in a hurry.
The highlight, of course, was the cake. Instead of a "regular" cake, Bumblebee designed little loaf cakes frosted with chocolate glaze and decorated with lollipop flowers, a pinwheel and a dye free gummy worm. The cakes were a little well done around the edges, and denser than the kids were used to. But there were no complaints...and the gummy worms won lots of brownie points (Thank you surfsweets!)
At this point the kids were good to go, and would have been perfectly happy to be set loose in the yard for the last 15 minutes or so. However, Bumblebee had wanted to play a few games so we rallied the guests. First, we played Pass The Flower, which consists of kids sitting in a circle and passing a fabric flower to the sound of Disney tunes. The person left holding the flower when the music stops is "out".
Then we played a unique party game that we called "Seed, sun, flower" We chose a caller (birthday Bumblebee) and she called commands. On Seed, they crouched; on Sun the stretched like a flower to the sun and on "Flower" they hopped as if being picked. This seemed to be the favorite, and half the guests wanted to keep playing when I suggested that they take the jumpropes outside if they wanted any outside time before parents arrived.
The best news is the kids were all dragged away protesting. The sign of a truly successful party: no one wants to go home!
With food allergies and chronic health woes, the birthday parties are more challenging than one might suspect! Once upon a time, we started birthday talk with "What will we serve?" We dreamt of cake, we agonized over appetizers. Now...the food aspect can quickly overwhelm us. What will we serve? What will the guests be willing to eat? How will it taste? How much will it cost? Do we dare even try to feed them? (And should we warn them about the grapeseed oil and tapioca starch?)
Nevermind all that. We've found a much better approach. The kids have informed me that they hate the food aspect of parties. They never even liked "real" cake that much anyways, and even though it makes their friends crazy, their friends don't care much about cake they only expect it because cake and birthday parties are synonymous. With that in mind, we now start our plans with a theme. This year, Bumblebee chose a garden theme. Of course, her birthday's in March and one year it threatened to snow for the first time in over 20 years...so this was just another excuse for us to pull out the creativity caps and plan a birthday party to remember!The first step is to design invitations. She wanted to hand out invitations this year, instead of just emailing them. So we pulled out my scrapbooking papers, and traced out hexagons, added petals and cut them out. She wrote the party details on each petal, with a big "It's a Party!" in the middle, and we folded the petals down to a pretty flower packet.
We started the party with a craft. She didn't like the planters we found in our price range, and the birdhouse kits didn't look very practical. But she fell in love with the little "Everything Grows with Love" signs, and then I stumbled on some bug themed magnets on clearance at Target. Cost: $6 for 2 crafts for a dozen kids. (Plus extra glue and paintbrushes)
After crafts, it was time to really get the kids excited. Besides, our favorite part of any birthday party we throw is the treasure hunt. (and who doesn't like hidden treasure?) I told the girls that I'd invited a garden fairy to give them some treasures, but she couldn't be found. She'd left a note leading them to the first clue...which was another note. All in all, there were 12 clues...leading them around the house and neighborhood in search of Gardenia. The final note apologized for missing them, but there was a fairy emergency and told them that the treasure could be found in the rose garden. Since it hadn't been there earlier in the hunt...it had a nice, magical touch. The treasure was a little gardening kit and jumprope, and this was the big party expenditure. (Actually, it was again quite inexpensive...I believe the treasure cost was around $16 total.)
The hunt left everyone starving. The food was definitely not your classic party fare, but we had planned a little carrot patch out of hummus dip which was deemed adorable and although the kids didn't eat much hummus, the carrots and even a few heads of broccoli vanished. We also put out some sunny orange slices and apple wedges, which disappeared in a hurry.
The highlight, of course, was the cake. Instead of a "regular" cake, Bumblebee designed little loaf cakes frosted with chocolate glaze and decorated with lollipop flowers, a pinwheel and a dye free gummy worm. The cakes were a little well done around the edges, and denser than the kids were used to. But there were no complaints...and the gummy worms won lots of brownie points (Thank you surfsweets!)At this point the kids were good to go, and would have been perfectly happy to be set loose in the yard for the last 15 minutes or so. However, Bumblebee had wanted to play a few games so we rallied the guests. First, we played Pass The Flower, which consists of kids sitting in a circle and passing a fabric flower to the sound of Disney tunes. The person left holding the flower when the music stops is "out".
Then we played a unique party game that we called "Seed, sun, flower" We chose a caller (birthday Bumblebee) and she called commands. On Seed, they crouched; on Sun the stretched like a flower to the sun and on "Flower" they hopped as if being picked. This seemed to be the favorite, and half the guests wanted to keep playing when I suggested that they take the jumpropes outside if they wanted any outside time before parents arrived.
Tuesday, March 09, 2010
"Mommy," Penguin's voice is hushed, tinged with a note of horror, "Some crayons are made out of...soybeans."
Er. Um. Yes, yes, I'd heard about that.
"But what about kids who are allergic?!?"
Er...well, depending on how bad their allergy is, their parents have to research the crayons and art supplies, and sometimes provide safe ones for their kids preschool or kindergarten class.
"Could the kids wear gloves?"
If they're old enough not to eat the crayons, and be trusted to wear them.
"Thats why they just buy crayons for everybody?"
Yes. Kindergarteners and preschoolers might not keep their own crayons to themselves.
"What about kids my age? Would they just bring their own?"
Probably. Or they could be trusted to wear gloves and not eat the crayons. I hope.
She giggles. Then frowns. "What about the ones who don't want to look like dorks?"
Er. Um. Yes, yes, I'd heard about that.
"But what about kids who are allergic?!?"
Er...well, depending on how bad their allergy is, their parents have to research the crayons and art supplies, and sometimes provide safe ones for their kids preschool or kindergarten class.
"Could the kids wear gloves?"
If they're old enough not to eat the crayons, and be trusted to wear them.
"Thats why they just buy crayons for everybody?"
Yes. Kindergarteners and preschoolers might not keep their own crayons to themselves.
"What about kids my age? Would they just bring their own?"
Probably. Or they could be trusted to wear gloves and not eat the crayons. I hope.
She giggles. Then frowns. "What about the ones who don't want to look like dorks?"
Friday, March 05, 2010
Fourth trip to the pharmacy in 4 weeks.
Even though they assured the neurologist that they did have a safe medication for us, when I got there I found that the first ingredient was lactose monohydrate. Which Penguin has reacted to in blind trials of medication. (namely the sudafed incidents--store brand okay, name brand not.)
I give up! Okay, I don't give up. But I sure am frustrated. And if I were the neurologist, I'd be frustrated too. There should be an easier way to determine safe medications. They can't check other headache formulas and give the doctor a list of what they have that's free of blue dye and lactose? They have to fill them one by one? Ugh! And they have to argue with me each step of the way. One argument including the fact that they do have a hospital emergency room right on sight if I want to give it a try "right now". (Um, she doesn't have a headache this instant and if I were expecting anaphylaxis, giving her something likely to cause anaphylaxis would be cruel, unusual and criminal.)
If this keeps up, I'm going to need migraine medecine. I've got a headache already.
Even though they assured the neurologist that they did have a safe medication for us, when I got there I found that the first ingredient was lactose monohydrate. Which Penguin has reacted to in blind trials of medication. (namely the sudafed incidents--store brand okay, name brand not.)
I give up! Okay, I don't give up. But I sure am frustrated. And if I were the neurologist, I'd be frustrated too. There should be an easier way to determine safe medications. They can't check other headache formulas and give the doctor a list of what they have that's free of blue dye and lactose? They have to fill them one by one? Ugh! And they have to argue with me each step of the way. One argument including the fact that they do have a hospital emergency room right on sight if I want to give it a try "right now". (Um, she doesn't have a headache this instant and if I were expecting anaphylaxis, giving her something likely to cause anaphylaxis would be cruel, unusual and criminal.)
If this keeps up, I'm going to need migraine medecine. I've got a headache already.
A Trip to the Pharmacy
My daughter lives with chronic migraines headaches. Mostly, they're under control. But over the past few months, every weather change has put her to bed. It made us want to re-evaluate our options. And we changed insurance companies, so we also wanted to touch base with our new doctor and bring them up to speed with our unique situation.
The pediatrician seemed nice, albeit eager to provide a prescription. Since that's what we were looking for, we let our qestions continue to hang in the air and headed for the pharmacy. With the misguided expectation that our questions regarding the medication would be answered there.
The pharmacy was busy. We waited in line for an hour and when I asked for more information, the pharmacy technician looked like she wanted to cry. I offered to return at a later time, and asked when they were least busy.
At her suggestion, I returned in the morning. Twice. This was only a mild inconvenience. After all, I know we have special needs. We will need more time than the "average" customer. So, it's common courtesy to return when there are fewer other customers around and the personnel are free to consult their computers and start problem solving with you. If I was willing to wait until a more opportune time, I thought they would be more apt to be helpful.
When I returned, I asked about blue dye and lactose. 2 hours later (and several assurances of "I'm sorry for the wait, it really will only be about 5 more minutes) I was told the suggested medication was lactose free and the pharmacist needed to talk to me. A half hour after that, I saw the pharmacist.
She handed me the medication and said "There's no problem." So I affirmed that there was no dye or lactose. "There's no lactose," she said. What about dye?
She rolled her eyes. She conceded that there was a small amount but that I should just deal with it.
I explained that this was a migraine medication and that blue dye triggers migraines in my daughter. I didn't want to risk doubling her pain. The pharmacist just stared. I explained that she'd reacted to blue dye in medications before. The pharmacist shook her head and said it wasn't a problem this time.
I asked if there was a different option. Perhaps a different manufacturer. "We don't do that." I was told. "Could I get a paper prescription and go elsewhere?" No, they 'don't work that way'.
So then I asked what my options were. "You have no options," she told me. "You take the medicine."
I'm not paying for medication that will make my daughter worse.
"We'll bill you either way," she said with a shrug.
And they have. Whether or not I pay for medication we can't use and didn't accept remains to be seen. (I vote no, and I'm pretty persistent.) Currently they are looking into it, and will call me back.
Meanwhile, we were referred to a migraine class that helps individuals identify triggers (which I rudely turned down. I regret my attitude, although I still don't feel a pressing need for the class unless it helps us navigate the pharmacy better.) And then a neurologist. Who is now the one dealing with pharmacy.
4 weeks later, we have no word on whether or not the pharmacy is capable of procuring safe, affordable abortive (taken only at onset) pain medication for a nearly 12 year old who can't tolerate a clinically insignificant ingredient used to color a tablet.
Statistically speaking, dye reactions or allergies are rare. Insignificant. Dye is used to change the appearance of medication, food, vitamins, even toothpaste. Blue, of all colors, is even reputed to be unappetizing. Blue plates encourage smaller portions. Blue kitchens reduce snacking urges. Blue is a rare color found in nature (and what's the last really-blue fruit or veggie you ate? Even blueberries are more purple than blue.) And yet, it's apparently a vital component in medications.
Which makes us statistically insignificant. The drug manufacturers dismiss us as statistical anomalies, just numbers on papers, and certain members of the medical community do as well. But I'm still sitting here wondering what will happen when it's something serious? What if she needed an antibiotic? Will we end up having to go the intravenous route because they can't get their act together?
What about me? (selfish as that sounds) I have a corn allergy. The last time I needed an antibiotic for a kidney infection, it took nearly a week to get compounded. It needed to get compounded. What's the protocol for that in a pharmaceutical setting that doesn't recognize inactive ingredients as allergens?
Statistically, an individual is not likely to react adversely to dyes in medication. Or corn derivatives. But we do. And we deserve access to safe, affordable options. Even if the pharmacist does find that our prescriptions are the one in a million that require forethought and attention.
The pediatrician seemed nice, albeit eager to provide a prescription. Since that's what we were looking for, we let our qestions continue to hang in the air and headed for the pharmacy. With the misguided expectation that our questions regarding the medication would be answered there.
The pharmacy was busy. We waited in line for an hour and when I asked for more information, the pharmacy technician looked like she wanted to cry. I offered to return at a later time, and asked when they were least busy.
At her suggestion, I returned in the morning. Twice. This was only a mild inconvenience. After all, I know we have special needs. We will need more time than the "average" customer. So, it's common courtesy to return when there are fewer other customers around and the personnel are free to consult their computers and start problem solving with you. If I was willing to wait until a more opportune time, I thought they would be more apt to be helpful.
When I returned, I asked about blue dye and lactose. 2 hours later (and several assurances of "I'm sorry for the wait, it really will only be about 5 more minutes) I was told the suggested medication was lactose free and the pharmacist needed to talk to me. A half hour after that, I saw the pharmacist.
She handed me the medication and said "There's no problem." So I affirmed that there was no dye or lactose. "There's no lactose," she said. What about dye?
She rolled her eyes. She conceded that there was a small amount but that I should just deal with it.
I explained that this was a migraine medication and that blue dye triggers migraines in my daughter. I didn't want to risk doubling her pain. The pharmacist just stared. I explained that she'd reacted to blue dye in medications before. The pharmacist shook her head and said it wasn't a problem this time.
I asked if there was a different option. Perhaps a different manufacturer. "We don't do that." I was told. "Could I get a paper prescription and go elsewhere?" No, they 'don't work that way'.
So then I asked what my options were. "You have no options," she told me. "You take the medicine."
I'm not paying for medication that will make my daughter worse.
"We'll bill you either way," she said with a shrug.
And they have. Whether or not I pay for medication we can't use and didn't accept remains to be seen. (I vote no, and I'm pretty persistent.) Currently they are looking into it, and will call me back.
Meanwhile, we were referred to a migraine class that helps individuals identify triggers (which I rudely turned down. I regret my attitude, although I still don't feel a pressing need for the class unless it helps us navigate the pharmacy better.) And then a neurologist. Who is now the one dealing with pharmacy.
4 weeks later, we have no word on whether or not the pharmacy is capable of procuring safe, affordable abortive (taken only at onset) pain medication for a nearly 12 year old who can't tolerate a clinically insignificant ingredient used to color a tablet.
Statistically speaking, dye reactions or allergies are rare. Insignificant. Dye is used to change the appearance of medication, food, vitamins, even toothpaste. Blue, of all colors, is even reputed to be unappetizing. Blue plates encourage smaller portions. Blue kitchens reduce snacking urges. Blue is a rare color found in nature (and what's the last really-blue fruit or veggie you ate? Even blueberries are more purple than blue.) And yet, it's apparently a vital component in medications.
Which makes us statistically insignificant. The drug manufacturers dismiss us as statistical anomalies, just numbers on papers, and certain members of the medical community do as well. But I'm still sitting here wondering what will happen when it's something serious? What if she needed an antibiotic? Will we end up having to go the intravenous route because they can't get their act together?
What about me? (selfish as that sounds) I have a corn allergy. The last time I needed an antibiotic for a kidney infection, it took nearly a week to get compounded. It needed to get compounded. What's the protocol for that in a pharmaceutical setting that doesn't recognize inactive ingredients as allergens?
Statistically, an individual is not likely to react adversely to dyes in medication. Or corn derivatives. But we do. And we deserve access to safe, affordable options. Even if the pharmacist does find that our prescriptions are the one in a million that require forethought and attention.
Sunday, February 28, 2010
Have your cookies...(But don't eat them)
It's that time of year again.
This year, both my girls came home sporting bright yellow envelopes, colorful order forms, and ear to ear grins. Girl Scout cookies!
Of course, I put on a brave smile and listen to them chatter about what they will do with the money they earn. The youngest is much, much more interested in what she, personally, can earn (a PSP! All she has to do is sell one thousand boxes. That doesn't sound too hard, right?) But there's a little something in my oldest's eyes.
We won't be buying very many boxes. They all have gluten, and dairy. They all have corn. The Dulce le Leches even have food coloring!
However, this seemed like the perfect opportunity to educate other allergy sufferers (especially those who might have fewer, easier allergens to navigate) on the finer points of cookie ordering. For many, this is is the season that comes but once a year. A season chock full of thin mints, hoedowns/peanut butter patties/tagalongs and Samoas/caramel deLites, adorable imps in brown and green vests and girl power galore.
Some place an order because they can't survive without the mints. Others order simply because they want to support scouting. And each troop gets a portion of the proceeds, while each girl is given incentives to strive for. It's a win/win situation. Unless you have food allergies.
If you do deal with food allergies, the dancing pigtails you see through the kitchen window when your doorbell rings may cause your heart to sink. However, what few people realize is that each order form actually carries a list of ingredients for each of the cookie varieties. You can look up the lists yourself at either Little Brownie Bakers or ABC Bakery (depending on which official Girl Scout bakery your local GS council chooses to order from.) ABC Bakery is especially allergy friendly, with extra precautions in place.
If you simply can't (or don't want to) eat the cookies, you can ask your local girl scout about the Cookie Share program. Some parents don't want to overplay the "give us money" number, but I think the program's kind of cool. Basically, you sign up to buy a box or two or ten of girl scout cookies, and designate where you want the cookies to go. Our local council offers to either send cases to the Military over seas, or to the local food bank. The council chooses appropriate cookies (thin mints do not fair well in Afghanistan, but trefoils and do-si-dos will still melt in a serviceman's mouth) to be sent to the location and distributed appropriately. I like to send to the military, since I hear they get pretty lonely and especially miss girl scout cookies...which are only available for a limited time. The familiar cookies have been sent to brighten the days of disaster victims, as well. And bring about smiles at the food pantry just when Christmas generosity has worn off and the "treats" section is looking thin.
If you choose to donate, the cookies go to a good cause, the girl gets credit toward her incentive and the troop still earns their cut. You get a receipt for your taxes. Everyone is happy.
This year, both my girls came home sporting bright yellow envelopes, colorful order forms, and ear to ear grins. Girl Scout cookies!
Of course, I put on a brave smile and listen to them chatter about what they will do with the money they earn. The youngest is much, much more interested in what she, personally, can earn (a PSP! All she has to do is sell one thousand boxes. That doesn't sound too hard, right?) But there's a little something in my oldest's eyes.
We won't be buying very many boxes. They all have gluten, and dairy. They all have corn. The Dulce le Leches even have food coloring!
However, this seemed like the perfect opportunity to educate other allergy sufferers (especially those who might have fewer, easier allergens to navigate) on the finer points of cookie ordering. For many, this is is the season that comes but once a year. A season chock full of thin mints, hoedowns/peanut butter patties/tagalongs and Samoas/caramel deLites, adorable imps in brown and green vests and girl power galore.
Some place an order because they can't survive without the mints. Others order simply because they want to support scouting. And each troop gets a portion of the proceeds, while each girl is given incentives to strive for. It's a win/win situation. Unless you have food allergies.
If you do deal with food allergies, the dancing pigtails you see through the kitchen window when your doorbell rings may cause your heart to sink. However, what few people realize is that each order form actually carries a list of ingredients for each of the cookie varieties. You can look up the lists yourself at either Little Brownie Bakers or ABC Bakery (depending on which official Girl Scout bakery your local GS council chooses to order from.) ABC Bakery is especially allergy friendly, with extra precautions in place.
If you simply can't (or don't want to) eat the cookies, you can ask your local girl scout about the Cookie Share program. Some parents don't want to overplay the "give us money" number, but I think the program's kind of cool. Basically, you sign up to buy a box or two or ten of girl scout cookies, and designate where you want the cookies to go. Our local council offers to either send cases to the Military over seas, or to the local food bank. The council chooses appropriate cookies (thin mints do not fair well in Afghanistan, but trefoils and do-si-dos will still melt in a serviceman's mouth) to be sent to the location and distributed appropriately. I like to send to the military, since I hear they get pretty lonely and especially miss girl scout cookies...which are only available for a limited time. The familiar cookies have been sent to brighten the days of disaster victims, as well. And bring about smiles at the food pantry just when Christmas generosity has worn off and the "treats" section is looking thin.
If you choose to donate, the cookies go to a good cause, the girl gets credit toward her incentive and the troop still earns their cut. You get a receipt for your taxes. Everyone is happy.
Saturday, February 27, 2010
Blue Dye
It's out there. It's a neurostimulant. It's actually being used as an experimental treatment for migraines.
I knew that it affected migraines because several years ago, we traced some very spectacular looking migraines (total pallor, projectile vomiting, collapse) to blue toothpaste and pretty blue jellybeans used in math centers. (Count the red and blue jelly beans. Now eat the blue ones. How many are left? No wonder Penguin doesn't like math.)
However, the greater medical community (and the even greater American populace) seems to remain in the dark.
I recently had yet another argument with a pharmacist about the relevance of inactive ingredients in medications. She stated that it wouldn't be serious. I politely replied that it would counteract our attempts to treat the migraine by adding new triggers. She disagreed, because there isn't a lot of blue in the medication. It looks white and red.
This is the trouble. Even if people begin to suspect a trigger, whether it's for migraines or stomach aches or behavioral issues, members of the medical community dismiss them in a hurry. They're too quick to cast shadows of doubt on people's personal observations. They ignore statements. Talk over people in reassuring tones. And sometimes we let them. I know I used to. And sometimes, especially when I'm sick (and it's regarding me) I let them.
But this was for my daughter. So I persisted.
We spoke with a new neurologist on Wednesday. She was interested, and believed us about the blue dye being a trigger.
Unfortunately, she's never had to deal with the pharmacy and inactive ingredients before. And apparently she's had as much trouble with them as we did. I think part of the problem is that it isn't the neurologist's job to look at the inactive ingredients of a medication. It's the pharmacist's job to find a suitable form of a prescription medication. They are supposed to be the experts in formulas. The doctors are supposed to know diagnosis, tests to use for diagnosis, and suggested treatments. It's the patient's job to choose a treatment, in consultation with the dr, and then carry it out. It's the pharmacist's job to assist them in getting the suitable treatment.
But when they don't feel like helping, it leaves the patient high and dry. The government is making it more and more difficult to access compounded medication. Compounding pharmacists need to protect themselves in order to serve the majority of their customers; and compounding pharmacies are a dying breed.
With the rising awareness of dye reactions, inactive ingredients in medication is going to continue to be problematic. And misinformed medical personnel can actually prolong diagnosis if the patient believes, in error, that medication is safe for them. If it should be safe, but it causes a rash, or anxiety, or depression, or insomnia...these symptoms could be construed as complications of conditions being treated.
How many people take medicine for depression? Or blood pressure? Or ADHD? Or countless other mild, but chronic, medical conditions? Ones that include symptoms like headaches, anxiety, behavioral issues, insomnia. How do you know of your symptroms are solved by a medication that can cause the symptoms you're treating? What sense is there in treating my daughter's migraine with a medication that contains an ingredient known to trigger her migraines?
I may not have a medical degree, but that doesn't mean I don't need an answer to that question before taking a chance. I'm concerned for the individuals who miss the fine print, who don't question the pharmacist, who suffer in the dark.
But I'm not sure how to fix it.
I knew that it affected migraines because several years ago, we traced some very spectacular looking migraines (total pallor, projectile vomiting, collapse) to blue toothpaste and pretty blue jellybeans used in math centers. (Count the red and blue jelly beans. Now eat the blue ones. How many are left? No wonder Penguin doesn't like math.)
However, the greater medical community (and the even greater American populace) seems to remain in the dark.
I recently had yet another argument with a pharmacist about the relevance of inactive ingredients in medications. She stated that it wouldn't be serious. I politely replied that it would counteract our attempts to treat the migraine by adding new triggers. She disagreed, because there isn't a lot of blue in the medication. It looks white and red.
This is the trouble. Even if people begin to suspect a trigger, whether it's for migraines or stomach aches or behavioral issues, members of the medical community dismiss them in a hurry. They're too quick to cast shadows of doubt on people's personal observations. They ignore statements. Talk over people in reassuring tones. And sometimes we let them. I know I used to. And sometimes, especially when I'm sick (and it's regarding me) I let them.
But this was for my daughter. So I persisted.
We spoke with a new neurologist on Wednesday. She was interested, and believed us about the blue dye being a trigger.
Unfortunately, she's never had to deal with the pharmacy and inactive ingredients before. And apparently she's had as much trouble with them as we did. I think part of the problem is that it isn't the neurologist's job to look at the inactive ingredients of a medication. It's the pharmacist's job to find a suitable form of a prescription medication. They are supposed to be the experts in formulas. The doctors are supposed to know diagnosis, tests to use for diagnosis, and suggested treatments. It's the patient's job to choose a treatment, in consultation with the dr, and then carry it out. It's the pharmacist's job to assist them in getting the suitable treatment.
But when they don't feel like helping, it leaves the patient high and dry. The government is making it more and more difficult to access compounded medication. Compounding pharmacists need to protect themselves in order to serve the majority of their customers; and compounding pharmacies are a dying breed.
With the rising awareness of dye reactions, inactive ingredients in medication is going to continue to be problematic. And misinformed medical personnel can actually prolong diagnosis if the patient believes, in error, that medication is safe for them. If it should be safe, but it causes a rash, or anxiety, or depression, or insomnia...these symptoms could be construed as complications of conditions being treated.
How many people take medicine for depression? Or blood pressure? Or ADHD? Or countless other mild, but chronic, medical conditions? Ones that include symptoms like headaches, anxiety, behavioral issues, insomnia. How do you know of your symptroms are solved by a medication that can cause the symptoms you're treating? What sense is there in treating my daughter's migraine with a medication that contains an ingredient known to trigger her migraines?
I may not have a medical degree, but that doesn't mean I don't need an answer to that question before taking a chance. I'm concerned for the individuals who miss the fine print, who don't question the pharmacist, who suffer in the dark.
But I'm not sure how to fix it.
Wednesday, February 03, 2010
If I were to fix the healthcare system...
Just a few of my thoughts after spending a day arguing with our new "insurance specific" pharmacy about whether or not blue dye reactions are valid, and another entire day waiting next to the phone to talk to a doctor about migraines and dye and medication options. I can see where this insurance could be good for someone without allergies or extenuating circumstances. But, we have extenuating circumstances. And I don't have the patience for them to learn on us, especially if they don't want to learn from us.
- Forget insurance for everyone. Healthcare for everyone. Affordable healthcare.
- Standardized billing codes. They have standard numbers for produce, they can create nationwide billing codes for well child, well adult, pap smear, emergency stitches, UTIs, heart attacks, etc.
- Responsibility in the healthcare field. Everyone makes mistakes. Doctors and nurses are human. But grown ups own up to their mistakes. If a healthcare provider makes an error, they should cover the costs of fixing it. Period. That's the way it is in any other industry. If they forget to run a B12 test when they draw blood, they pay to draw more blood. If they cause an allergic reaction by inadvertently giving a medication containing a known allergen (for the individual) the individual should not bear the cost of treatment. (within reason. If they insist on a -cillin drug and know that they'll react, it's their own fault.) If they remove the wrong mole, they should cover the cost to go back in and remove the right one.
- Full disclosure. All options should be discussed. And if an insurance plan does not cover the cost of a chosen course of treatment, a payment plan should be implemented. One that takes into account a person's financial situation. In other words, income should not dictate your access to the best treatments.
- For non-medically necessary treatments and procedures, predicted costs should be readily accessible. The patient's portion of a payment for a ct scan or laparoscopic surgery "just to see" should be part of a decision making process if the patient feels it is relevant.
- An extremely unsatisfactory office visit deserves a refund of at least part of the copay. The patient is the customer. They should be treated with respect, educated to their degree of willingness and interest, and should be a partner in their own healthcare. If a doctor disagrees with a patient, they should free them to go elsewhere. Doctors should be free to admit when they aren't comfortable treating a patient's condition and not willing to learn. This would probably cut down on misdiagnosis, and overuse of the mental health system. :P
- Not sure if this should be a healthcare mandate, but patients should be encouraged to use doctors wisely. Perhaps a "good patient" benefit for not overusing the cold/flu visits? Or for getting standard tests run prior to an appointment so that you can have the best use of your, and the doctor's, time. (A doctor can request or approve a request for tests but insist the patient come to an office visit to receive results and discuss options.) This would encourage doctors to educate patients on managing their health, and encourage patients to take charge of their own health, and make wise personal decisions (wait and see if a low grade fever breaks within 48 hours) Perhaps having a health nurse who can reccomend home treatments with the caveat that any patient wanting to be seen will be given an appt would work.
- Pharmacies should be required to release a prescription (print an electronic one) if the patient requests it. That way if there is a disagreement between patient and pharmacist, the patient can go to a different pharmacy. This would encourage the pharmacist to work with patients, as well as empower patients to self advocate when necessary.
- The process for applying for insurance should be fixed. You should be able to get a quote before submitting estimated payments. You should be able to get quotes from several companies. And you should be able to regularly shop around while insured, without endangering your insurance. If currently insured, there should be no "pre-existing conditions", even if you're switching from employee sponsored to self subscribed. And self subscribers shouldn't have to pay more than employee-sponsored programs do.
Just a few of my thoughts after spending a day arguing with our new "insurance specific" pharmacy about whether or not blue dye reactions are valid, and another entire day waiting next to the phone to talk to a doctor about migraines and dye and medication options. I can see where this insurance could be good for someone without allergies or extenuating circumstances. But, we have extenuating circumstances. And I don't have the patience for them to learn on us, especially if they don't want to learn from us.
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