This entry, like so many lately, has been inspired by recent goings on in a variety of online communities I take part in.
The subject that inspired me was the frustrated comment that food allergies feel like a prison. I can understand where they're coming from. Indeed, it's frustrating when 'everyone' is going out to eat and you have to find something to bring along, or eat in advance, or just beg off. It's hard to avoid participating in the most fundamental of ice breakers..."Did you try that dip? OMG, it's to die for!" It's lonely to not identify with the curbside "what's new at Starbucks" conversation.
But I don't view food allergies as a prison.
For years, I was in pain. I did my best to ignore it, to push myself out, I put on a smile and bounced about, and laughed like there was no tomorrow. But I had that internal monologue going. "5 more minutes. Just 5 more minutes." I had a route mapped to the bathroom, I was imagining soothing white light coating my abdomen, I begged off citing "headaches" and "menstrual cramps". No one seemed to notice that I always had pms...and if it did come up I joked that I was stuck with "pre, post, present" syndrome. We laughed. Life goes on.
But every moment was just one step in front of another.
My daughter has fond memories of the days before I had "food allergies". When I'd tell her to grab a big pile of books, and we'd snuggle up in bed with the heating pad and read for hours. She remembers building a fort, and me telling her to bring the juice and a cup so I didn't have to leave. She doesn't know that I didn't have the strength to walk to the kitchen. And the memory chills me.
Although I am still dealing with many of the affects of food allergies, I'm also healing. I'm awed by the trips we take, to the zoo, to the library, to the park. Trips that I enjoy. I used to think I enjoyed them, but I hurt. I wasn't really "there". I was in my internal monologue of "5 more minutes, this doesn't hurt that bad." or "Breathe, just keep breathing, slowly, that's right." I love lamaze. I barely used it in labor, but I got a lot of use out of it for other reasons.
Sure, my heart still pauses when I have a meeting I can't miss. I still make sure I can have a quick getaway even though I haven't needed one in awhile. (Okay, okay, okay, I had a few close calls over Christmas. It was a nasty reminder of what life used to be like; and if it weren't for December, I probably would be feeling even less skittish at the moment.) As a good friend once told me "The best way to get over a fear is to jump right in. But, when you jump in and a freak wave knocks you over and tangles you up in seaweed, it just confirms that your fear was well founded. And obviously, it makes it much harder to 'just jump in' again." I'm just recovering from the seaweed memories. It doesn't mean that food allergies create a prison.
As far as I'm concerned, the allergies have set me free. That freedom is a bit scary at times. And of course...I still have physical symptoms that hold me back, and frustrate me. Restaurants are not a relaxing opportunity. Parties are scary. But only because of my memories and fear of embarrassing myself. I can't shake the memory of walking into a career counselors office, forcing a smile and vomiting into his trash can; running in shame. (Maybe I should get that health under control before job hunting?) Or the restaurants. *shivering*.
Now that was isolating. Violent stomach flu striking any moment of any day, several times a month with little warning other than the almost omni-present discomfort; now THAT was a prison. Doctors shaking their heads and telling me to buck up, shrugging, suggesting I relax...just jailors, throwing away another key. Medications that at best, left me sleepy and unsafe to drive? Just empty hope.
Discovering food allergies? It's like being set free after years of prison. Sure, I'm not living the life that TV tells me everyone wants. I may not be an executive anything, or the PTA mom, or a June Cleaver-wannnabe. I'm not a social butterfly, and I've never eaten at the half dozen restaurants I use as landmarks when giving directions. But I have some control over my health. I have hope. Hope! That thing with feathers, that perches on the soul...(Emily Dickinson)
I can bond at the park. I can bond with other parents over the trials of bedtime or their toddlers new cute boots. Everyone can relate to grocery budgeting, whether you buy ingredients or pre-packaged goods. And there's not one of us who doesn't have a pile of laundry calling.
Food allergies may have imprisoned me once, but now that they're labeled and acknowledged, they've set me free. I'm no more imprisoned than an Orhodox Jew, or Seventh Day Adventist. The only prison is in my own memories.
Saturday, January 31, 2009
Tuesday, January 27, 2009
There's Mercury in that Corn...
Well, as a corn allergic individual, I've learned that the vast majority of the time, "There's Corn in that. And there's Corn in that, too." However...I did not know that High Fructose Corn Syrup was contaminated with the heavy metal Mercury. In fact, it contains a LOT of mercury.
The Corn Refiners Association argues that they have cleaned up their act. Not only is there now no mercury in corn syrup, they now are using mercury free processing agents.
Amusing. If there never was mercury in corn syrup, why are they "now" using the mercury free versions of caustic soda and hydrochloric acid? And why has it never come out before that this "all natural sweetener" used to have mercury?
With all of the hype about corn syrup causing obesity, one would think that if there had been evidence before, even suspect, that it would have found it's way into American's ears. Unless, of course, there was a cover up. (Is this when Mel Gibson shows up at my door with "Conspiracy Theory" theme music?)
Perhaps the study was flawed? Then why was it confirmed by a second study conducted by the Institute for Agricultural and Trade Policy? This one showed that around 31% of the food and beverage products that contain high fructose corn syrup which were tested (purchased straight from supermarket shelves) contained mercury. The study was limited, meant only to challenge the findings of the first study after a notable lack of response from the FDA and other consumer advocacy groups. And it proved that the first study...had some merit, after all.
But corn is good. The Corn Refiners Association is huge industry. Corn is in everything, and they are looking for ways to stick it in products that lack this miracle food. It has fiber. And it grows well in North America. Most importantly, it's government subsidized. And it has so many other potential uses, such as ethanol.
Some days, I think that's about all corn is fit for...burning. At least it will kill us slowly, and it burns cleaner than coal.
The Corn Refiners Association argues that they have cleaned up their act. Not only is there now no mercury in corn syrup, they now are using mercury free processing agents.
Amusing. If there never was mercury in corn syrup, why are they "now" using the mercury free versions of caustic soda and hydrochloric acid? And why has it never come out before that this "all natural sweetener" used to have mercury?
With all of the hype about corn syrup causing obesity, one would think that if there had been evidence before, even suspect, that it would have found it's way into American's ears. Unless, of course, there was a cover up. (Is this when Mel Gibson shows up at my door with "Conspiracy Theory" theme music?)
Perhaps the study was flawed? Then why was it confirmed by a second study conducted by the Institute for Agricultural and Trade Policy? This one showed that around 31% of the food and beverage products that contain high fructose corn syrup which were tested (purchased straight from supermarket shelves) contained mercury. The study was limited, meant only to challenge the findings of the first study after a notable lack of response from the FDA and other consumer advocacy groups. And it proved that the first study...had some merit, after all.
But corn is good. The Corn Refiners Association is huge industry. Corn is in everything, and they are looking for ways to stick it in products that lack this miracle food. It has fiber. And it grows well in North America. Most importantly, it's government subsidized. And it has so many other potential uses, such as ethanol.
Some days, I think that's about all corn is fit for...burning. At least it will kill us slowly, and it burns cleaner than coal.
The Shrinking World
Our world is shrinking.
Not our planet, although if the arctic ice continues melting, the amount of available land will certainly continue to shrink. I mean our world, our environment...what we perceive as "the world".
We used to live in our own cities, and the boundaries were defined. We bought produce from the market, our staple pantry items from the corner store. The corner store was supplied from a local farmer. Who grew their own crops.
There were bigger companies, too. But their supplies, again, were limited by distance.
We used to travel through books, and talking on phones seemed miraculous. Our president was a mythical figure, and our state representative might be a vague idea as well. We lived in the here; and if we didn't like what was going on in our local community...we could do something about it, or we could find a better place to live.
That doesn't work anymore. We live globally. Our kitchen is stocked from all over the planet (Thailand, Indonesia, Brazil, Italy); our cupboards are filled with merchandise made in China from parts and pieces gathered from a selection of countries. Our corner store is located on our desktop, if not our palmpilot. GPS makes us feel right at ease in any "new" location...without even meeting the eyes of a local gas station attendandant.
The internet informs us not only of our local news but whats going on in Pakistan. The smaller the world gets, the more out of control we feel; and so the government makes new laws, new legislature meant to protect us from our own inadequacies.
Don't homeschool. Even if the public school is failing your child, the government challenges you to jump through hoops to keep your child home. Someone has to fail, even if it is your child.
Mass-vaccinate. Sure, hundreds die each year. But that's so thousands can live. They don't dare give freedom of choice to trained individual doctors who know a patient's history. No, much better to make that decision without looking a child in the face. Otherwise, they might hesitate; knowing the risks.
Forget compounding drugs. Someone, somewhere can take advantage of that. Besides, it's too risky. The compounding pharmacist might make a mistake. And that would be dangerous, at least as dangerous as anaphylaxis from the excipient used to bind the drug commercially. Much better to leave the statistically insignificant helpless. From a boardroom, they can't see them suffering anyways.
Crush the small farmer. They can't afford fancy machinery, they can't afford to lose a room full of carcasses and they can't dedicate an entire field's yield to testing. They can't provide a separate bathroom with proper sewage to the handfull of customers they have. They can't hire help unless they can afford to build a new housing unit. They can't charge for tours. Nevermind that they have such a limited distribution and work slowly enough for their production to be a safer choice than whats turned out at a frightening speed by bug businesses; nevermind that they have a personal rapport with customers and an intense personal drive to keep their customers happy. Forget the fact that customers are thinking individuals who can look around and make choices for themselves whether or not to risk eating the meat, or grain, or homemade apple pie that's for sale. They can't compete with billion dollar agricultural giants, so they can drown.
And now toys. Toys, and clothes, and hair accessories. All the little unique items found in church bazaars and craft fairs and online from individual entrepreneurs are being threatened. Mothers who work from home to produce slings, and cloth diapers, and handcrafted baby and child items are threatened. The retiree who spends his days creating heirloom quality children's toys in his backyard shop for a bit of supplemental income is threatened.
Why? Why, because those big companies...the ones who produce massive quantities of colorful, plastic future-landfill fodder...cut a few too many corners. They got so big, and the world so small, that they harmed a few too many kids. Too much lead showed up in items meant to be mouthed. And the government took action, looking only at the big companies, the CPSC created a Consumer Product Safety Improvement Act. And this act threatens the livelihood of thousands, just when the economy is at its weakest.
The worst thing is, it's disguised as a good thing.
In order to stay in business, all a company needs to do is send a portion of each batch of toys or clothing off for independant testing. They simply need to pass a lead screening, and prove that they meet the governments standards. It would be tragic if that hardwood race car carved by Joe happened to have lead in it. Or if that christening gown, with hand tatted lace, was laced with poisons. Who would guess? Certainly not the people who produced them in the first place, the ones whose livelihood depends on every customer's satisfaction.
It sounds reasonable until you do the math. In order to stay in business, small business owners would need to raise their prices astronomically. A $10 barrette set would go for close to $5000. After conservative testing had been paid for, anyways.
Whether I want to or not, I'm stuck buying the cheap ones from China. From a company that can afford to take risks with my child's safety, because the odds of that small batch of lead painted barrettes getting found are minute. The government will have much better luck tracking down small businesses who make a slight error, don't you think? And the small business owner won't have the resources to recover.
With price tags like that, entrepreneurs won't be able to get started. Famous Amos ate a Nestle Tollhouse cookie and said "Hey, someone should sell these." So he tried. And when it worked, he earned enough to grow and slowly start doing it "right".
If he'd been required to buy the production equipment, get a license, and have a third of his first batch tossed for testing purposes we'd never have found pre-packaged chocolate chip cookies on the store shelves.
What futures will be harmed because a visionaries hands were tied with red tape?
And when will it end? Where do we draw the line? When do we, as a society, see that parents can make the decision to parent? There is no "right" answer for everyone. It's okay to make mistakes, that's how we learn. The trouble is, individuals need the freedom to make mistakes, while corporations need the constrains of laws to keep them from forgetting their responsibility to each individual.
Our world needs to shrink again, in the opposite direction. We need to start shopping at our local stores, where our taxes stay in our own community, and we support people who live here, too. We need to be governed by our local officials, who can see our unique needs better in person. We need to be trusted to make decisions, and given full disclosure so that we can make an informed decision. And we need to learn not to simply pass the buck to the next guy. When we make mistakes, we need to own up to them. Just as we hold others responsible for their own errors.
Not our planet, although if the arctic ice continues melting, the amount of available land will certainly continue to shrink. I mean our world, our environment...what we perceive as "the world".
We used to live in our own cities, and the boundaries were defined. We bought produce from the market, our staple pantry items from the corner store. The corner store was supplied from a local farmer. Who grew their own crops.
There were bigger companies, too. But their supplies, again, were limited by distance.
We used to travel through books, and talking on phones seemed miraculous. Our president was a mythical figure, and our state representative might be a vague idea as well. We lived in the here; and if we didn't like what was going on in our local community...we could do something about it, or we could find a better place to live.
That doesn't work anymore. We live globally. Our kitchen is stocked from all over the planet (Thailand, Indonesia, Brazil, Italy); our cupboards are filled with merchandise made in China from parts and pieces gathered from a selection of countries. Our corner store is located on our desktop, if not our palmpilot. GPS makes us feel right at ease in any "new" location...without even meeting the eyes of a local gas station attendandant.
The internet informs us not only of our local news but whats going on in Pakistan. The smaller the world gets, the more out of control we feel; and so the government makes new laws, new legislature meant to protect us from our own inadequacies.
Don't homeschool. Even if the public school is failing your child, the government challenges you to jump through hoops to keep your child home. Someone has to fail, even if it is your child.
Mass-vaccinate. Sure, hundreds die each year. But that's so thousands can live. They don't dare give freedom of choice to trained individual doctors who know a patient's history. No, much better to make that decision without looking a child in the face. Otherwise, they might hesitate; knowing the risks.
Forget compounding drugs. Someone, somewhere can take advantage of that. Besides, it's too risky. The compounding pharmacist might make a mistake. And that would be dangerous, at least as dangerous as anaphylaxis from the excipient used to bind the drug commercially. Much better to leave the statistically insignificant helpless. From a boardroom, they can't see them suffering anyways.
Crush the small farmer. They can't afford fancy machinery, they can't afford to lose a room full of carcasses and they can't dedicate an entire field's yield to testing. They can't provide a separate bathroom with proper sewage to the handfull of customers they have. They can't hire help unless they can afford to build a new housing unit. They can't charge for tours. Nevermind that they have such a limited distribution and work slowly enough for their production to be a safer choice than whats turned out at a frightening speed by bug businesses; nevermind that they have a personal rapport with customers and an intense personal drive to keep their customers happy. Forget the fact that customers are thinking individuals who can look around and make choices for themselves whether or not to risk eating the meat, or grain, or homemade apple pie that's for sale. They can't compete with billion dollar agricultural giants, so they can drown.
And now toys. Toys, and clothes, and hair accessories. All the little unique items found in church bazaars and craft fairs and online from individual entrepreneurs are being threatened. Mothers who work from home to produce slings, and cloth diapers, and handcrafted baby and child items are threatened. The retiree who spends his days creating heirloom quality children's toys in his backyard shop for a bit of supplemental income is threatened.
Why? Why, because those big companies...the ones who produce massive quantities of colorful, plastic future-landfill fodder...cut a few too many corners. They got so big, and the world so small, that they harmed a few too many kids. Too much lead showed up in items meant to be mouthed. And the government took action, looking only at the big companies, the CPSC created a Consumer Product Safety Improvement Act. And this act threatens the livelihood of thousands, just when the economy is at its weakest.
The worst thing is, it's disguised as a good thing.
In order to stay in business, all a company needs to do is send a portion of each batch of toys or clothing off for independant testing. They simply need to pass a lead screening, and prove that they meet the governments standards. It would be tragic if that hardwood race car carved by Joe happened to have lead in it. Or if that christening gown, with hand tatted lace, was laced with poisons. Who would guess? Certainly not the people who produced them in the first place, the ones whose livelihood depends on every customer's satisfaction.
It sounds reasonable until you do the math. In order to stay in business, small business owners would need to raise their prices astronomically. A $10 barrette set would go for close to $5000. After conservative testing had been paid for, anyways.
Whether I want to or not, I'm stuck buying the cheap ones from China. From a company that can afford to take risks with my child's safety, because the odds of that small batch of lead painted barrettes getting found are minute. The government will have much better luck tracking down small businesses who make a slight error, don't you think? And the small business owner won't have the resources to recover.
With price tags like that, entrepreneurs won't be able to get started. Famous Amos ate a Nestle Tollhouse cookie and said "Hey, someone should sell these." So he tried. And when it worked, he earned enough to grow and slowly start doing it "right".
If he'd been required to buy the production equipment, get a license, and have a third of his first batch tossed for testing purposes we'd never have found pre-packaged chocolate chip cookies on the store shelves.
What futures will be harmed because a visionaries hands were tied with red tape?
And when will it end? Where do we draw the line? When do we, as a society, see that parents can make the decision to parent? There is no "right" answer for everyone. It's okay to make mistakes, that's how we learn. The trouble is, individuals need the freedom to make mistakes, while corporations need the constrains of laws to keep them from forgetting their responsibility to each individual.
Our world needs to shrink again, in the opposite direction. We need to start shopping at our local stores, where our taxes stay in our own community, and we support people who live here, too. We need to be governed by our local officials, who can see our unique needs better in person. We need to be trusted to make decisions, and given full disclosure so that we can make an informed decision. And we need to learn not to simply pass the buck to the next guy. When we make mistakes, we need to own up to them. Just as we hold others responsible for their own errors.
Sunday, January 25, 2009
The Tie That's Stressed
When we take our vows, most of us think of them romantically. For better or worse (Insert image of him snoring, or an image of her frantic scrubbing when the in-laws are due.) For richer or poorer (Image of Caroline Ingalls leaving the cushy town life to follow Charles into the Big Woods, the Prairie and so on.) In sickness and in health. (An image of an elderly couple entering a retirement home together).
But very few of us are lucky enough to stay healthy until we're a ripe old age. And for some of us, that "sickness and in health" bit doesn't just refer to the common cold. Nor does it mean anything out of a Nicholas Sparks novel.
When diagnosed with food mediated illness, most people are given a few dietary pointers, a reassuring smile and a few lists to bring with them to the grocery store. They can buy as many cookbooks as they want and there are many support groups out there to help them learn to navigate society with a food restriction. But there aren't many guidebooks that address how devastating a food restriction can be to your relationship.
Your marriage partner signs up to love you despite your faults (and sometimes because of them.) He (or she) is supposed to be the rock that you lean on when you just aren't strong enough to go it alone, and in return, you are supposed to be healthy and strong when they need you most. This give and take is tantamount to any relationship.
So, what happens when one partner suddenly can't hold up their end of the bargain, for an extended period of time? Both partners are frustrated. The dishes don't get washed, the laundry isn't done "right" and a few bills might slip through the cracks. Tension mounts. Eventually, one or the other may get fed up.
It can be especially frustrating when a diagnosis takes a long time coming. Celiac Disease can take 11 years, on average, to diagnose. One study found that half the patients involved had suffered for 28 years from unexplained symptoms and abnormal lab results before finally being properly diagnosed. Although education among doctors is rising, and they are slowly chipping that average down, years upon years of "stress" diagnosis and trips to the hospital (not to mention the innumerable pit stops) wear a person, and a couple, down. The suffering partner may begin to doubt themselves, or distance themselves. They are embarassed at their weakness and their physical symptoms. (No one, and I do mean No One, wants their lover to know how much time the need to spend in the bathroom. Any abdominal attack is a huge romance killer.)
The healthy partner may be frustrated by their own helplessness, and after awhile start to resent their suffering counterpart. After all, most people bounce back after a bout of the flu. So why aren't they? They may harbor secret fears that there's something more sinister about the malady, or they may take the low road and suspect that the real culprit lies somewhere in the head, rather than the gut. Such a diagnosis is devastating to someone who is suffering.
Not only is it miserable to be sick day in and day out, but the one person you should be able to count on, the one person who you can let your hair down in front of and break down in tears of frustration or rage against the latest doctor who shrugged you off is your spouse. And if they suddenly "take sides" against you, then you really start to feel like it might be hopeless.
Then comes the diagnosis. There is elation, for both parties. There is an adjustment period. And for some, that's all there is. Sure, it will take two to prepare dinners and both spouses will need to double check ingredients and be willing to make sacrifices, but there's hope.
Unfortunately, not all couples are able to come together and be made stronger by suffering. And the resultant dietary restrictions (which impact the freedom of eating out, the customary food bonding rituals, the parties and many holiday traditions) make it difficult to find common ground. Most magazine articles dealing with the subject of how to re-connect suggest relaxing with a regular date night. A relaxing dinner out is great for some...but not if your allergies are severe or if you're still learning how to manage them. For dietary-restricted individuals, a restaurant meal can be a nightmare. And it certainly won't bring you closer if you can't relax.
There are numerous counselors who suggest that a spouse spontaneously bring dinner home, another nightmare. Chocolate? Well, if he gets the "wrong one" she might end up crying, and not with happiness.
Dinnertime conversation can be difficult as well. After years of suffering, and then a period of learning, food restrictions may be paramount in your mind or theirs. There is a steep learning curve, and most people share what they are learning and excited about. (Trust me, it's exciting to learn that you aren't "just" stressed.) Sometimes that learning period lasts longer for one spouse or the other.
Parents of food allergic kids have the added stress of trying to balance their approach to the restrictions. One parent may focus on simply keeping the child safe, while the other wants to make sure that they don't "miss out" on life. And sometimes, one parent takes a stronger role in educating themselves in the restriction. There are many cases where a parent of a food allergic child chooses to "fight" the diagnosis, to the child's danger and obviously the detriment of the marriage. Our allergist says he hates being called as a witness in custody disputes, because he doesn't know which parent is right. He can only state in a court of law the same thing he's told both parents in person...avoid the offending substance.
And yet, still there remains little emotional support for those who are dealing with food restrictions, especially food allergies. There are groups such as FAAN and POFAK; but these focus on educating the masses and encouraging the food allergy sufferer to continue to live. Very little effort is put into preserving a relationship.
After all, it's just food. And once you know the problem, you're healed. It sounds easy. And from a simply medical standpoint, it is. Problem identified, treatment initiated. Problem solved.
Well, one problem is solved, but that problem opens the door to several more.
I've known several people who go through a divorce or end a long term relationship and cite their food restrictions as the final straw, if not the trigger. Many healthy partners feel that they didn't "sign up" for dietary changes and restrictions. They have their own pressures in daily life.
They don't seem to see that just because their loved one is suffering doesn't mean that they can't be a sounding board. And they may have spent a long time dreaming about "when things get back to normal". Not only are they needing to adjust to the their partner's new diet, they have to deal with the staunch reality that it will never be "the same". Their dreams need to change, too. They need a mourning period, and unfortunately, they usually feel guilty for it.
I wonder why there aren't more support groups for spouses of food allergic individuals? Or couples counselling designed for couples who are dealing with dietary restrictions. Googling has revealed very little on the subject. Even asking for help just dealing with the emtional aspect of food restrictions reveals that there is not nearly enough known about the psychological aspects of not only imposing self will to protect yourself from well meant peer pressure (Pizza! Ice Cream!) but a prolonged misdiagnosis of "stress" or "eating disorder".
If we really want to help people with food restrictions, we need to address all their needs, and work with the loved ones who are supporting them, too.
But very few of us are lucky enough to stay healthy until we're a ripe old age. And for some of us, that "sickness and in health" bit doesn't just refer to the common cold. Nor does it mean anything out of a Nicholas Sparks novel.
When diagnosed with food mediated illness, most people are given a few dietary pointers, a reassuring smile and a few lists to bring with them to the grocery store. They can buy as many cookbooks as they want and there are many support groups out there to help them learn to navigate society with a food restriction. But there aren't many guidebooks that address how devastating a food restriction can be to your relationship.
Your marriage partner signs up to love you despite your faults (and sometimes because of them.) He (or she) is supposed to be the rock that you lean on when you just aren't strong enough to go it alone, and in return, you are supposed to be healthy and strong when they need you most. This give and take is tantamount to any relationship.
So, what happens when one partner suddenly can't hold up their end of the bargain, for an extended period of time? Both partners are frustrated. The dishes don't get washed, the laundry isn't done "right" and a few bills might slip through the cracks. Tension mounts. Eventually, one or the other may get fed up.
It can be especially frustrating when a diagnosis takes a long time coming. Celiac Disease can take 11 years, on average, to diagnose. One study found that half the patients involved had suffered for 28 years from unexplained symptoms and abnormal lab results before finally being properly diagnosed. Although education among doctors is rising, and they are slowly chipping that average down, years upon years of "stress" diagnosis and trips to the hospital (not to mention the innumerable pit stops) wear a person, and a couple, down. The suffering partner may begin to doubt themselves, or distance themselves. They are embarassed at their weakness and their physical symptoms. (No one, and I do mean No One, wants their lover to know how much time the need to spend in the bathroom. Any abdominal attack is a huge romance killer.)
The healthy partner may be frustrated by their own helplessness, and after awhile start to resent their suffering counterpart. After all, most people bounce back after a bout of the flu. So why aren't they? They may harbor secret fears that there's something more sinister about the malady, or they may take the low road and suspect that the real culprit lies somewhere in the head, rather than the gut. Such a diagnosis is devastating to someone who is suffering.
Not only is it miserable to be sick day in and day out, but the one person you should be able to count on, the one person who you can let your hair down in front of and break down in tears of frustration or rage against the latest doctor who shrugged you off is your spouse. And if they suddenly "take sides" against you, then you really start to feel like it might be hopeless.
Then comes the diagnosis. There is elation, for both parties. There is an adjustment period. And for some, that's all there is. Sure, it will take two to prepare dinners and both spouses will need to double check ingredients and be willing to make sacrifices, but there's hope.
Unfortunately, not all couples are able to come together and be made stronger by suffering. And the resultant dietary restrictions (which impact the freedom of eating out, the customary food bonding rituals, the parties and many holiday traditions) make it difficult to find common ground. Most magazine articles dealing with the subject of how to re-connect suggest relaxing with a regular date night. A relaxing dinner out is great for some...but not if your allergies are severe or if you're still learning how to manage them. For dietary-restricted individuals, a restaurant meal can be a nightmare. And it certainly won't bring you closer if you can't relax.
There are numerous counselors who suggest that a spouse spontaneously bring dinner home, another nightmare. Chocolate? Well, if he gets the "wrong one" she might end up crying, and not with happiness.
Dinnertime conversation can be difficult as well. After years of suffering, and then a period of learning, food restrictions may be paramount in your mind or theirs. There is a steep learning curve, and most people share what they are learning and excited about. (Trust me, it's exciting to learn that you aren't "just" stressed.) Sometimes that learning period lasts longer for one spouse or the other.
Parents of food allergic kids have the added stress of trying to balance their approach to the restrictions. One parent may focus on simply keeping the child safe, while the other wants to make sure that they don't "miss out" on life. And sometimes, one parent takes a stronger role in educating themselves in the restriction. There are many cases where a parent of a food allergic child chooses to "fight" the diagnosis, to the child's danger and obviously the detriment of the marriage. Our allergist says he hates being called as a witness in custody disputes, because he doesn't know which parent is right. He can only state in a court of law the same thing he's told both parents in person...avoid the offending substance.
And yet, still there remains little emotional support for those who are dealing with food restrictions, especially food allergies. There are groups such as FAAN and POFAK; but these focus on educating the masses and encouraging the food allergy sufferer to continue to live. Very little effort is put into preserving a relationship.
After all, it's just food. And once you know the problem, you're healed. It sounds easy. And from a simply medical standpoint, it is. Problem identified, treatment initiated. Problem solved.
Well, one problem is solved, but that problem opens the door to several more.
I've known several people who go through a divorce or end a long term relationship and cite their food restrictions as the final straw, if not the trigger. Many healthy partners feel that they didn't "sign up" for dietary changes and restrictions. They have their own pressures in daily life.
They don't seem to see that just because their loved one is suffering doesn't mean that they can't be a sounding board. And they may have spent a long time dreaming about "when things get back to normal". Not only are they needing to adjust to the their partner's new diet, they have to deal with the staunch reality that it will never be "the same". Their dreams need to change, too. They need a mourning period, and unfortunately, they usually feel guilty for it.
I wonder why there aren't more support groups for spouses of food allergic individuals? Or couples counselling designed for couples who are dealing with dietary restrictions. Googling has revealed very little on the subject. Even asking for help just dealing with the emtional aspect of food restrictions reveals that there is not nearly enough known about the psychological aspects of not only imposing self will to protect yourself from well meant peer pressure (Pizza! Ice Cream!) but a prolonged misdiagnosis of "stress" or "eating disorder".
If we really want to help people with food restrictions, we need to address all their needs, and work with the loved ones who are supporting them, too.
Friday, January 23, 2009
The most frustrating thing in the world...
Is when you have successfully adapted a cake recipe. And you write it down. And you put it somewhere safe.
And then, when you've been craving said cake and there is a really good reason to make one, and you find a recipe that's in your handwriting. You make the recipe, thinking something seems wrong but you don't know exactly what. And when it comes out of the oven, it becomes apparent that it is nothing at all like the cake that you have been craving like crazy.
And you can't buy something similar. And when you try to find out if you wrote the recipe on the computer, you realize that you did not because your husband re organized all of your writing. In fact, his junior high papers are now mixed in with your carefully sorted-by-disk articles. Not to mention everything that you've taken hours and days and months to research about allergies and manufacturers, and...oh, yes, recipes.
And you can't just pull up a new recipe. This was converted from one that you stumbled across once that looked convertible, and took 3 tries.
You just wasted rice flour that costs $4 per pound; plus shipping. So you'll serve it to the family, who will enjoy it, but it still won't be that moist, yummy gingery cake that you've been craving and will, apparently, continue to crave until you find a similar recipe. And manage to properly convert it to gluten free/casein free/corn free. (Most gluten free recipes contain xanthan or guar gum, while guar is okay for some with corn allergies it's a major faux-pas for anyone with IBS. And why flirt with danger?)
I know the original handwritten notes are on a piece of paper I had just 2 days ago; that I used to share a different "cheese-less cheese cracker" with someone. So it has to be here somewhere. But, that doesn't make it any less disappointing.
And then, when you've been craving said cake and there is a really good reason to make one, and you find a recipe that's in your handwriting. You make the recipe, thinking something seems wrong but you don't know exactly what. And when it comes out of the oven, it becomes apparent that it is nothing at all like the cake that you have been craving like crazy.
And you can't buy something similar. And when you try to find out if you wrote the recipe on the computer, you realize that you did not because your husband re organized all of your writing. In fact, his junior high papers are now mixed in with your carefully sorted-by-disk articles. Not to mention everything that you've taken hours and days and months to research about allergies and manufacturers, and...oh, yes, recipes.
And you can't just pull up a new recipe. This was converted from one that you stumbled across once that looked convertible, and took 3 tries.
You just wasted rice flour that costs $4 per pound; plus shipping. So you'll serve it to the family, who will enjoy it, but it still won't be that moist, yummy gingery cake that you've been craving and will, apparently, continue to crave until you find a similar recipe. And manage to properly convert it to gluten free/casein free/corn free. (Most gluten free recipes contain xanthan or guar gum, while guar is okay for some with corn allergies it's a major faux-pas for anyone with IBS. And why flirt with danger?)
I know the original handwritten notes are on a piece of paper I had just 2 days ago; that I used to share a different "cheese-less cheese cracker" with someone. So it has to be here somewhere. But, that doesn't make it any less disappointing.
Monday, January 19, 2009
The A - Z Reading Challenge
If I'm going to try it, I might as well keep track of it.
And I suppose I might as well publish it, too, rather than keep it here on edit for all time...To be continuously updated. I hope!
A- Animal Vegetable Miracle by B Kingsolver
B- Brain that Changes Itself - Intriguing book, I learned a lot!
C- Cereal for Dinner -
D- Deerskin by Robin Mckinley - Enjoyed it; not appropriate at all for Penguin.
E- Ella Minnow Pea by Mark Dunn - I'm not really a fan of the epistolary novel, but this one had a neat premise. Quick read, loved the way the letters got more academic and then turned rather red-neck before resolution occurred.
F- the Frog Princess By E.D. Baker - This is our current read aloud series. Very cute books.
G-
H- Healing the New Childhood Epidemics - Good book about various (alternative) treatments to allergies, asthma, ADHD and autism. Kind of a "bring to the dr with you" sort of thing, though.
I-
J- Jerome K. Jerome's 3 men in a Boat - OMG, why had I never heard of this guy before? Loved it! And it's still totally relevant. Maybe a little outdated...but not so much that I had to stretch my imagination. I ended up reading quite a bit out loud to my dh.
K- Kabul Beauty School -
L- Loving Frank - Interesting read. I didn't like it, exactly. I was frustrated by their attitudes about "Living True". But, it was intriguing and I'm interested in looking up Ellen Keys work. (Oddly, I agree with the conflicting attitudes although they confused the heroine.) Did not see the end coming, I guess my history lessons were lacking!!!
M- March - Okay, I really liked this book, except for the gory bits. I'm squeamish, but it was a good read. Based on the life of Mr. Alcott, as Little Women was based on Louisa May's family life.
N-
O-
P- Picture of Dorian Gray by Wilde (Loved the beginning, the story however disturbed me more than anticipated.) Also screened Princess Ben for Penguin; totally appropriate and I ended up reading the whole thing.
Q- Queen Bees and Wannabees - As the mother of a tweenager, I really wish I hadn't read this book! Okay, okay, I know I *needed* to. But, ouch. I want to lock my baby up forever, now. (And I realized that some people never really outgrow cliques. Explains a few things.)
R- Rose Daughter by McKinley - The ending was a little too much. But I still enjoyed it.
S- Spindle's End by Mckinley -- OMG. could not put it down! Penguin and I have been playing tug of war with this one. Might even be worth owning. This is the 3rd McKinley book I've read this year, hmmm...Maybe I need to branch out a little...
T- To Say Nothing of the Dog by Connie Willis -- I'm not usually a sci-fi fan, but I really enjoyed this one! I found myself laughing out loud a few times.
U- The Unhealthy Truth by Robyn O'brian -- Wow. I just don't know what else to say.
V-
W- Who the H*ll is Pansy O'Hara -- Rather a dry read, but very interesting. Lists the back story on great books and authors of our time.
X-
Y-
Z-
**And I've even decided to add my thoughts on the books. You'll have to forgive the frequent editing; I'm not sure how else to keep it updated. And if I log it with the intention of reading THROUGH the alphabet, I'm more motivated to find a good book...
And I suppose I might as well publish it, too, rather than keep it here on edit for all time...To be continuously updated. I hope!
A- Animal Vegetable Miracle by B Kingsolver
B- Brain that Changes Itself - Intriguing book, I learned a lot!
C- Cereal for Dinner -
D- Deerskin by Robin Mckinley - Enjoyed it; not appropriate at all for Penguin.
E- Ella Minnow Pea by Mark Dunn - I'm not really a fan of the epistolary novel, but this one had a neat premise. Quick read, loved the way the letters got more academic and then turned rather red-neck before resolution occurred.
F- the Frog Princess By E.D. Baker - This is our current read aloud series. Very cute books.
G-
H- Healing the New Childhood Epidemics - Good book about various (alternative) treatments to allergies, asthma, ADHD and autism. Kind of a "bring to the dr with you" sort of thing, though.
I-
J- Jerome K. Jerome's 3 men in a Boat - OMG, why had I never heard of this guy before? Loved it! And it's still totally relevant. Maybe a little outdated...but not so much that I had to stretch my imagination. I ended up reading quite a bit out loud to my dh.
K- Kabul Beauty School -
L- Loving Frank - Interesting read. I didn't like it, exactly. I was frustrated by their attitudes about "Living True". But, it was intriguing and I'm interested in looking up Ellen Keys work. (Oddly, I agree with the conflicting attitudes although they confused the heroine.) Did not see the end coming, I guess my history lessons were lacking!!!
M- March - Okay, I really liked this book, except for the gory bits. I'm squeamish, but it was a good read. Based on the life of Mr. Alcott, as Little Women was based on Louisa May's family life.
N-
O-
P- Picture of Dorian Gray by Wilde (Loved the beginning, the story however disturbed me more than anticipated.) Also screened Princess Ben for Penguin; totally appropriate and I ended up reading the whole thing.
Q- Queen Bees and Wannabees - As the mother of a tweenager, I really wish I hadn't read this book! Okay, okay, I know I *needed* to. But, ouch. I want to lock my baby up forever, now. (And I realized that some people never really outgrow cliques. Explains a few things.)
R- Rose Daughter by McKinley - The ending was a little too much. But I still enjoyed it.
S- Spindle's End by Mckinley -- OMG. could not put it down! Penguin and I have been playing tug of war with this one. Might even be worth owning. This is the 3rd McKinley book I've read this year, hmmm...Maybe I need to branch out a little...
T- To Say Nothing of the Dog by Connie Willis -- I'm not usually a sci-fi fan, but I really enjoyed this one! I found myself laughing out loud a few times.
U- The Unhealthy Truth by Robyn O'brian -- Wow. I just don't know what else to say.
V-
W- Who the H*ll is Pansy O'Hara -- Rather a dry read, but very interesting. Lists the back story on great books and authors of our time.
X-
Y-
Z-
**And I've even decided to add my thoughts on the books. You'll have to forgive the frequent editing; I'm not sure how else to keep it updated. And if I log it with the intention of reading THROUGH the alphabet, I'm more motivated to find a good book...
Monday, January 12, 2009
My daughter's Journey
Although I often find myself sharing bits and pieces of my oldest daughter's story, I have yet to write it out with all the minute details. And those minute details will only get fuzzier as time goes by.
So here it is, in hopes that others can learn from our mistakes.
Penguin was what's known as a "happy spitter". In hindsight, she had all the hallmarks of classic reflux, but I was a first time mom. It didn't seem odd to pack 2 changes of clothes for her, an extra blouse for me and some receiving blankets to use as towels just so we could dash to the grocery store. That's why we had a diaper bag. And in the words of our pediatrician, all babies spit up. Some parents worry more than others. *smile*
So we didn't worry. I learned to sleep with her propped on my shoulder until she was crawling, because if she went back in the crib after that midnight feeding, she'd spit, choke, and we'd be up all night.
Dutifully, we introduced rice cereal just before she turned 6 months old. She started spitting up less, and slept a little better. "Of course, it stays with her longer than mommy's milk" our wise pediatrician told us. We never thought about the thick porridge simply being easier to keep in.
Soon afterward, we stayed with my inlaws for a few days. I took a nap, and was woken by a screaming baby.
"She wants mommy," my mother in law shrugged.
But my daughter had never cried like this before. She sounded as if she were in pain. She spat up, and it was discolored. I called the dr.
While waiting anxiously for him to call back, my sister in law suggested I feed her more yoghurt.
More?
Apparently she'd been hungry earlier and they'd gotten almost an entire carton of yoghurt down. That explained the funky spit up. The pediatrician called back, gave me a lecture on early dairy introduction (don't do it) and told me to ride it out.
She didn't scream like that again for almost a year, when we introduced cows milk. She screamed as angry bubbles gurgled in her tummy, and I prayed it wasn't really an allergy. The pediatrician reassuringly suggested we wait a few weeks and try cheese, instead. Cheese is easier to digest.
Around this time, she also began complaining of headaches. She'd insist on playing with the curtains drawn. "Light hurt!" Classic migraines, which her father and I get too. We thought the poor kid was just starting early. And man, was she susceptible to "the stomach flu". But it couldn't be the cheese. Cheese is healthy, the dr assured us.
When she collapsed on the ground, pale, sweaty and screaming hysterically,we raced to the pediatrician. "Did you try Tylenol?" A sheepish "no". He told us to try Tylenol next time. No fever, no vomiting. (that came later, and we were assured, was migraine related.) It couldn't have been the mac and cheese followed by ice cream. No way. Nuh, uh. Dairy foods are important, remember? Calcium is vital to growing bones.
I did start to suspect that there was some sort of dairy issue. It tugged at the back of my mind. But, it wasn't blatant. No rashes. No prolonged vomiting. She gained great. Everyone told me I was paranoid. And frankly, I didn't feel that great myself so it was easy to ignore the red flags.
We decided it might be a "tolerance" issue. We avoided liquid milk, the occasional accidental sip at church or a friend's house gave her horrible tummy aches. But cheese was okay, at least in moderation. Sure she still got tummy aches, but those were from overeating. Or excitement. Or, something. Kids get tummy aches. You hug them and put them to bed.
Right?
At some point we went back to the doctor. We saw a pediatric GI. We did some testing. We found nothing. "She's got you wrapped around her finger," he said waggling his own finger. He told me to quit worrying. (Interestingly enough, I read the GI doctor's report recently. He write that the "mother", me, had obvious symptoms of Celiac Disease and definite Dermatitis Herpetiformis. So much for "rosacea" and "stress". I still wish he'd explained those things to me, personally. He did not test Penguin properly for Celiac disease.)
She was an extreme child. She'd run away and when caught and scolded, she'd soon turn pale and sweaty and have a headache. The doctors told me it was migraine. "Geesh, she's starting early." And that at her age, all we could do was give her Tylenol or Motrin and put her to bed. Give her lots of hugs and snuggles.
We'd fight over tooth brushing. I'd put the baby in the crib, pin Penguin down, scrub those teeth and let her spit. She'd cry. She'd apologize for being difficult. She'd complain of a headache. I'd hug her and tell her that if she wouldn't fight so hard, she wouldn't get a headache. Then we'd go through the process again.
She developed cyclic vomiting. "It's migraine related," I was told. Don't worry. No, not food. Don't take her off dairy. She's a growing girl. She needs the calcium. Just keep tabs on anything acidic, like OJ.
We learned to adapt. After all, I didn't feel that great myself. I focused on whole foods, finding that perfect level of health. My husband commented that he felt so much better, and I wondered why it wasn't helping us?
I started to worry that there was something serious when I found my 4 y/o curled up under the slide holding her head, and she asked me if we could invite some kids home so she could lay in bed and listen to them play.
That's not normal.
The dr shrugged helplessly.
When the baby was dx with a nut allergy, the pediatrician tapped his chin and suggested that we look for foods as a trigger for Penguin's headaches. I found several books on the subject. We tried an elimination diet. The rash on my face cleared up (An ah-ha moment for me) but her headaches were still there.
The doctor told me to use Motrin and Tylenol. He gave me the "safe" high end dose for her weight (not the one on the package) and I bought them in different flavors so that she could differentiate which made her headache worse. She claimed Motrin made her head hurt. "Impossible," the doctor said. Next month, she complained that Tylenol made her head hurt. The doctor suggested we look into a behavioral cause, rather than honest to goodness pain. If it weren't for the sudden loss of color in her face and the way she seemed so frustrated by her headaches, I'd have believed him.
When she entered Kindergarten, the school called on a regular basis to have me pick her up. The first time I found her covered in blue vomit, I said "Ew." The second time it happened, I remembered the grape flavored medicine. I told the teacher not to serve her any more fruit chews or jelly beans during math lesson. She spent less time in the office.
We noticed that her toothpaste was blue, and switched to Tom's of Maine.
She began brushing her own teeth and the nightly headache went away. (I still feel like a heel)
But we only had a piece of the puzzle.
She was still getting headaches, just not quite as spectacular. Every birthday party resulted in tummy aches. So did school parties, and hot lunch. We called it some sort of lactose intolerance, and blamed the rest on excitement.
There are things we choose not to believe.
We went through allergy testing, found that she was allergic to grass (which explained the mystery hives after PE) and certain trees (we later traced tree-tag to headaches and rashes, as well) We were put on a more thorough elimination diet. She got better, but not 100% after eliminating dairy. And she got an "unrelated" sinus infection that wouldn't quit.
We started working on the sinus infections. She was running fevers of 105, 106. I'd walk in to check on her and could smell her cooking. The fever would break within an hour, and we were told that was good. Just a sinus infection. Use pseuphedrine. Push fluids. Here's some flonase and antibiotics.
Eventually, we discovered that her adenoids were blocking the drainage from her sinuses. Given the excessively high fevers, we opted to remove them. Sinus infections gone.
Headaches with vomiting still present. On to medication for migraines.
(Meanwhile, I was dx with celiac and a host of other food intolerances.)
After the migraine medication worked for a period of time, Penguin commented that it was weird that she still threw up. This was news to me, and she gave a vivid description of reflux. She considered it normal. Just like going to bed with a tummy ache after a birthday party was normal. It was a good thing we knew to avoid blue sprinkles, because a headache on top of those tummy aches would have been really bad.
Back to the doctor. Reflux is associated with dairy. It wouldn't hurt to cut it out. But give it 6 weeks this time.
During those 6 weeks, she had only one tummy ache with vomiting. It followed a glass of chocolate rice milk that contained whey protein. At the end of 6 weeks, my 8 year old turned down pizza or macaroni (two favorite foods) because she didn't want those tummy aches back. I realized that I no longer had to change her pillowcase daily. She didn't have a sore throat in the mornings. She slept a little better, too. And we were able to successfully cut back her migraine meds.
The best part? Instant improved confidence. She wanted to go on playdates. She was glad to go to Girl Scouts and birthday parties. And she told me how to best advocate for her needs.
Since then, we've added gluten to the mix. I worry about limiting her too much, and making her feel "different". She's not anaphylactic, and as far as the doctor could tell there was no villous damage (yet). The gluten was for residual headaches and family reasons. (Plus, when she got inadvertently and secretly "glutened" it caused physical symptoms.) But as she tells me, it's harder to be sick in front of your friends than it is to not eat what they eat. Of course, that doesn't mean it's easy to say no to cookies.
My grocery bill is sky high, I don't know what to make for dinner, and some days I just want to go back to bed and call for pizza.
But my daughter is healthy, and that's what matters.
Rice pasta anyone?
So here it is, in hopes that others can learn from our mistakes.
Penguin was what's known as a "happy spitter". In hindsight, she had all the hallmarks of classic reflux, but I was a first time mom. It didn't seem odd to pack 2 changes of clothes for her, an extra blouse for me and some receiving blankets to use as towels just so we could dash to the grocery store. That's why we had a diaper bag. And in the words of our pediatrician, all babies spit up. Some parents worry more than others. *smile*
So we didn't worry. I learned to sleep with her propped on my shoulder until she was crawling, because if she went back in the crib after that midnight feeding, she'd spit, choke, and we'd be up all night.
Dutifully, we introduced rice cereal just before she turned 6 months old. She started spitting up less, and slept a little better. "Of course, it stays with her longer than mommy's milk" our wise pediatrician told us. We never thought about the thick porridge simply being easier to keep in.
Soon afterward, we stayed with my inlaws for a few days. I took a nap, and was woken by a screaming baby.
"She wants mommy," my mother in law shrugged.
But my daughter had never cried like this before. She sounded as if she were in pain. She spat up, and it was discolored. I called the dr.
While waiting anxiously for him to call back, my sister in law suggested I feed her more yoghurt.
More?
Apparently she'd been hungry earlier and they'd gotten almost an entire carton of yoghurt down. That explained the funky spit up. The pediatrician called back, gave me a lecture on early dairy introduction (don't do it) and told me to ride it out.
She didn't scream like that again for almost a year, when we introduced cows milk. She screamed as angry bubbles gurgled in her tummy, and I prayed it wasn't really an allergy. The pediatrician reassuringly suggested we wait a few weeks and try cheese, instead. Cheese is easier to digest.
Around this time, she also began complaining of headaches. She'd insist on playing with the curtains drawn. "Light hurt!" Classic migraines, which her father and I get too. We thought the poor kid was just starting early. And man, was she susceptible to "the stomach flu". But it couldn't be the cheese. Cheese is healthy, the dr assured us.
When she collapsed on the ground, pale, sweaty and screaming hysterically,we raced to the pediatrician. "Did you try Tylenol?" A sheepish "no". He told us to try Tylenol next time. No fever, no vomiting. (that came later, and we were assured, was migraine related.) It couldn't have been the mac and cheese followed by ice cream. No way. Nuh, uh. Dairy foods are important, remember? Calcium is vital to growing bones.
I did start to suspect that there was some sort of dairy issue. It tugged at the back of my mind. But, it wasn't blatant. No rashes. No prolonged vomiting. She gained great. Everyone told me I was paranoid. And frankly, I didn't feel that great myself so it was easy to ignore the red flags.
We decided it might be a "tolerance" issue. We avoided liquid milk, the occasional accidental sip at church or a friend's house gave her horrible tummy aches. But cheese was okay, at least in moderation. Sure she still got tummy aches, but those were from overeating. Or excitement. Or, something. Kids get tummy aches. You hug them and put them to bed.
Right?
At some point we went back to the doctor. We saw a pediatric GI. We did some testing. We found nothing. "She's got you wrapped around her finger," he said waggling his own finger. He told me to quit worrying. (Interestingly enough, I read the GI doctor's report recently. He write that the "mother", me, had obvious symptoms of Celiac Disease and definite Dermatitis Herpetiformis. So much for "rosacea" and "stress". I still wish he'd explained those things to me, personally. He did not test Penguin properly for Celiac disease.)
She was an extreme child. She'd run away and when caught and scolded, she'd soon turn pale and sweaty and have a headache. The doctors told me it was migraine. "Geesh, she's starting early." And that at her age, all we could do was give her Tylenol or Motrin and put her to bed. Give her lots of hugs and snuggles.
We'd fight over tooth brushing. I'd put the baby in the crib, pin Penguin down, scrub those teeth and let her spit. She'd cry. She'd apologize for being difficult. She'd complain of a headache. I'd hug her and tell her that if she wouldn't fight so hard, she wouldn't get a headache. Then we'd go through the process again.
She developed cyclic vomiting. "It's migraine related," I was told. Don't worry. No, not food. Don't take her off dairy. She's a growing girl. She needs the calcium. Just keep tabs on anything acidic, like OJ.
We learned to adapt. After all, I didn't feel that great myself. I focused on whole foods, finding that perfect level of health. My husband commented that he felt so much better, and I wondered why it wasn't helping us?
I started to worry that there was something serious when I found my 4 y/o curled up under the slide holding her head, and she asked me if we could invite some kids home so she could lay in bed and listen to them play.
That's not normal.
The dr shrugged helplessly.
When the baby was dx with a nut allergy, the pediatrician tapped his chin and suggested that we look for foods as a trigger for Penguin's headaches. I found several books on the subject. We tried an elimination diet. The rash on my face cleared up (An ah-ha moment for me) but her headaches were still there.
The doctor told me to use Motrin and Tylenol. He gave me the "safe" high end dose for her weight (not the one on the package) and I bought them in different flavors so that she could differentiate which made her headache worse. She claimed Motrin made her head hurt. "Impossible," the doctor said. Next month, she complained that Tylenol made her head hurt. The doctor suggested we look into a behavioral cause, rather than honest to goodness pain. If it weren't for the sudden loss of color in her face and the way she seemed so frustrated by her headaches, I'd have believed him.
When she entered Kindergarten, the school called on a regular basis to have me pick her up. The first time I found her covered in blue vomit, I said "Ew." The second time it happened, I remembered the grape flavored medicine. I told the teacher not to serve her any more fruit chews or jelly beans during math lesson. She spent less time in the office.
We noticed that her toothpaste was blue, and switched to Tom's of Maine.
She began brushing her own teeth and the nightly headache went away. (I still feel like a heel)
But we only had a piece of the puzzle.
She was still getting headaches, just not quite as spectacular. Every birthday party resulted in tummy aches. So did school parties, and hot lunch. We called it some sort of lactose intolerance, and blamed the rest on excitement.
There are things we choose not to believe.
We went through allergy testing, found that she was allergic to grass (which explained the mystery hives after PE) and certain trees (we later traced tree-tag to headaches and rashes, as well) We were put on a more thorough elimination diet. She got better, but not 100% after eliminating dairy. And she got an "unrelated" sinus infection that wouldn't quit.
We started working on the sinus infections. She was running fevers of 105, 106. I'd walk in to check on her and could smell her cooking. The fever would break within an hour, and we were told that was good. Just a sinus infection. Use pseuphedrine. Push fluids. Here's some flonase and antibiotics.
Eventually, we discovered that her adenoids were blocking the drainage from her sinuses. Given the excessively high fevers, we opted to remove them. Sinus infections gone.
Headaches with vomiting still present. On to medication for migraines.
(Meanwhile, I was dx with celiac and a host of other food intolerances.)
After the migraine medication worked for a period of time, Penguin commented that it was weird that she still threw up. This was news to me, and she gave a vivid description of reflux. She considered it normal. Just like going to bed with a tummy ache after a birthday party was normal. It was a good thing we knew to avoid blue sprinkles, because a headache on top of those tummy aches would have been really bad.
Back to the doctor. Reflux is associated with dairy. It wouldn't hurt to cut it out. But give it 6 weeks this time.
During those 6 weeks, she had only one tummy ache with vomiting. It followed a glass of chocolate rice milk that contained whey protein. At the end of 6 weeks, my 8 year old turned down pizza or macaroni (two favorite foods) because she didn't want those tummy aches back. I realized that I no longer had to change her pillowcase daily. She didn't have a sore throat in the mornings. She slept a little better, too. And we were able to successfully cut back her migraine meds.
The best part? Instant improved confidence. She wanted to go on playdates. She was glad to go to Girl Scouts and birthday parties. And she told me how to best advocate for her needs.
Since then, we've added gluten to the mix. I worry about limiting her too much, and making her feel "different". She's not anaphylactic, and as far as the doctor could tell there was no villous damage (yet). The gluten was for residual headaches and family reasons. (Plus, when she got inadvertently and secretly "glutened" it caused physical symptoms.) But as she tells me, it's harder to be sick in front of your friends than it is to not eat what they eat. Of course, that doesn't mean it's easy to say no to cookies.
My grocery bill is sky high, I don't know what to make for dinner, and some days I just want to go back to bed and call for pizza.
But my daughter is healthy, and that's what matters.
Rice pasta anyone?
Saturday, January 10, 2009
Geneticall Modified Organisms
The very name sounds frightening. But it doesn't come close to the problem.
Why am I talking about Genetic Modifications, or GMOs? The subject has come up frequently since president elect Obama's choice for Secretary of Agriculture, Vilsack, was announced about a month ago. Vilsack is known as a proponent of bio-tech...in ither words, he is believed to strongly support research into genetic modification of crops and animal cloning etc.
GMOs have been the subject of hot debate for many years, and they don't appear to be falling off the docket any time soon. The "pro" side claims that genetic modification has gone on for centuries, and the current gene-splicing research is simply a modern, streamlined version of what orur forefathers did. The idea being that farmers of old would indeed try to cross breed varieties of wheat, corn, oats, etc to bring out the more desirable traits. Like breeding horses, sometimes it worked and sometimes it didn't. And when it didn't, they probably lay in bed thinking that there had to be a better way.
Enter gene splicing. Now we don't have to rely on the whim of mother nature to get the exact traits we're looking for. In a nutshell, scientists find what they are seeking in DNA, then splice the DNA together and watch what happens.
It seems like a good plan. It's certainly more succinct than cross breeding, growing and then harvesting. It's much more scientific than finger crossing and silent prayer.
But the "con" side wants to know about potential pitfalls. Is it safe for human consumption? Is it safe for non-human consumption? Is it safe for the environment? The fact is that we don't know. There's a lot that we just don't know, and that ignorance cn prove fatal for the environment. (I think we're all well acquainted with DDT controversy of the 60's. Dr. Muller actually won a nobel prize for discovering that DDT could be used as an insecticidal. 20 years later, the Dept of Agriculture was phasing it out due to it's possible role in the dramatic decline of the Peregrine Falcon population.)
The threat of GMOs go much deeper than insecticides and pesticides and herbicides. The fear of GMOs comes with the realization that it is virtually impossible to experiment with GMOs and keep the genetically modified genes contained. Nature still does it's job, as it's been programmed to do year after year. Birds eat seed in the field, squirrels steal seed and they get transported. The pollen travels on the wind to another local (organic?) field. And, like time immemorial, the genetic alterations are preserved. Offspring shoot up along highways, and in the middle of other fields. Heirloom varieties of various produce and grain get tainted. These occurrences are impossible to contain, and are impossible to reverse. Even worse? It takes a professional with fancy lab equipment to tell the difference.
That may seem like a good thing. If the only difference between genetically altered crops and normal crops is under a microscope, what's the fuss? Right?
Right?
Wrong. Our bodies may not be able to interpret the difference with our five traditional senses, but over time the differences may reveal themselves.
There was a time when obstetricians reccomended that pregnant women take up smoking, since it made childbirth that much easier. They have turned tables on that advice since the realization that babies with smaller birthrates had a lower survival rate. And a glass of wine is no longer reccomended either, due to the affect alcohol has on a still forming fetus.
These correlations took years to make. And thousands, if not millions, of human beings paid the price. Our children benefit by learning from those mistakes, though.
Genetic Modification doesn't leave room for them to benefit if big companies like Monsanto are wrong. If GMOs are as dangerous to the environment (and the animal life ingesting them) as some people fear, the price will be a hefty one. Clean up efforts will take lifetimes. There will be no starting over from square one, because simply by growing these man-manipulated organisms, we are setting them free in the wild. And honestly...our knowledge is not yet deep enough to truly fathom the potential far reaching implications of those actions.
Through traditional modifications, the gluten content of grain has more than tripled since ancient times. As has the incidence of celiac disease. (Yes, wasting diseases that sound like Celiac were reported even in biblical times) In fact, areas where wheat was most recently introduced (such as southern Ireland) have the highest incidence of Celiac disease.
What does that have to do with GMOs? Well, by using natural resources, humans interfered with nature's plan, developing higher gluten content in wheat and then learned to regret it in certain poulations. Luckily...due to our forced limitations, we were able to identify and treat the problem (hence, 1 in 133 people "simply" avoid gluten containing grains.)
How do we track down reactions to a DNA variability embedded in "normal" food? When one potato chip doesn't attack, but the next one does?
What will happen when a full percent of the poulation needs to avoid GMOs for medical reasons? If that number rises? And those GMOs are rampant in our food supply, blowing unchecked through our prized amber waves of grain?
What if 3 generations down the road, a Nobel Peace prize is awarded to the woman who discovers that early or prenatal exposure to GMOs are linked with heart disease in later life, or infertility, or some new, unknown plague that will only become apparent in our offspring?
What if Genetic Modification isn't a legacy, but a curse?
Organic groups have playfully deemed Genetically Modified Organisms as "Frankenfood", citing the eerily apt connection between Mary Shelley's ignorant but brilliant protagonist and our own agricultural industry's ambitious vision. But just as in her dark fantasy, I fear that "Frankenfood" will come to haunt us for generations to come.
And that's why I signed a petition (I know, internet petitions get little recognition according to Snopes. But it's something.), and sent in letters through a link in this article. And why I prefer organic foods, even when allergies don't demand them.
Why am I talking about Genetic Modifications, or GMOs? The subject has come up frequently since president elect Obama's choice for Secretary of Agriculture, Vilsack, was announced about a month ago. Vilsack is known as a proponent of bio-tech...in ither words, he is believed to strongly support research into genetic modification of crops and animal cloning etc.
GMOs have been the subject of hot debate for many years, and they don't appear to be falling off the docket any time soon. The "pro" side claims that genetic modification has gone on for centuries, and the current gene-splicing research is simply a modern, streamlined version of what orur forefathers did. The idea being that farmers of old would indeed try to cross breed varieties of wheat, corn, oats, etc to bring out the more desirable traits. Like breeding horses, sometimes it worked and sometimes it didn't. And when it didn't, they probably lay in bed thinking that there had to be a better way.
Enter gene splicing. Now we don't have to rely on the whim of mother nature to get the exact traits we're looking for. In a nutshell, scientists find what they are seeking in DNA, then splice the DNA together and watch what happens.
It seems like a good plan. It's certainly more succinct than cross breeding, growing and then harvesting. It's much more scientific than finger crossing and silent prayer.
But the "con" side wants to know about potential pitfalls. Is it safe for human consumption? Is it safe for non-human consumption? Is it safe for the environment? The fact is that we don't know. There's a lot that we just don't know, and that ignorance cn prove fatal for the environment. (I think we're all well acquainted with DDT controversy of the 60's. Dr. Muller actually won a nobel prize for discovering that DDT could be used as an insecticidal. 20 years later, the Dept of Agriculture was phasing it out due to it's possible role in the dramatic decline of the Peregrine Falcon population.)
The threat of GMOs go much deeper than insecticides and pesticides and herbicides. The fear of GMOs comes with the realization that it is virtually impossible to experiment with GMOs and keep the genetically modified genes contained. Nature still does it's job, as it's been programmed to do year after year. Birds eat seed in the field, squirrels steal seed and they get transported. The pollen travels on the wind to another local (organic?) field. And, like time immemorial, the genetic alterations are preserved. Offspring shoot up along highways, and in the middle of other fields. Heirloom varieties of various produce and grain get tainted. These occurrences are impossible to contain, and are impossible to reverse. Even worse? It takes a professional with fancy lab equipment to tell the difference.
That may seem like a good thing. If the only difference between genetically altered crops and normal crops is under a microscope, what's the fuss? Right?
Right?
Wrong. Our bodies may not be able to interpret the difference with our five traditional senses, but over time the differences may reveal themselves.
There was a time when obstetricians reccomended that pregnant women take up smoking, since it made childbirth that much easier. They have turned tables on that advice since the realization that babies with smaller birthrates had a lower survival rate. And a glass of wine is no longer reccomended either, due to the affect alcohol has on a still forming fetus.
These correlations took years to make. And thousands, if not millions, of human beings paid the price. Our children benefit by learning from those mistakes, though.
Genetic Modification doesn't leave room for them to benefit if big companies like Monsanto are wrong. If GMOs are as dangerous to the environment (and the animal life ingesting them) as some people fear, the price will be a hefty one. Clean up efforts will take lifetimes. There will be no starting over from square one, because simply by growing these man-manipulated organisms, we are setting them free in the wild. And honestly...our knowledge is not yet deep enough to truly fathom the potential far reaching implications of those actions.
Through traditional modifications, the gluten content of grain has more than tripled since ancient times. As has the incidence of celiac disease. (Yes, wasting diseases that sound like Celiac were reported even in biblical times) In fact, areas where wheat was most recently introduced (such as southern Ireland) have the highest incidence of Celiac disease.
What does that have to do with GMOs? Well, by using natural resources, humans interfered with nature's plan, developing higher gluten content in wheat and then learned to regret it in certain poulations. Luckily...due to our forced limitations, we were able to identify and treat the problem (hence, 1 in 133 people "simply" avoid gluten containing grains.)
How do we track down reactions to a DNA variability embedded in "normal" food? When one potato chip doesn't attack, but the next one does?
What will happen when a full percent of the poulation needs to avoid GMOs for medical reasons? If that number rises? And those GMOs are rampant in our food supply, blowing unchecked through our prized amber waves of grain?
What if 3 generations down the road, a Nobel Peace prize is awarded to the woman who discovers that early or prenatal exposure to GMOs are linked with heart disease in later life, or infertility, or some new, unknown plague that will only become apparent in our offspring?
What if Genetic Modification isn't a legacy, but a curse?
Organic groups have playfully deemed Genetically Modified Organisms as "Frankenfood", citing the eerily apt connection between Mary Shelley's ignorant but brilliant protagonist and our own agricultural industry's ambitious vision. But just as in her dark fantasy, I fear that "Frankenfood" will come to haunt us for generations to come.
And that's why I signed a petition (I know, internet petitions get little recognition according to Snopes. But it's something.), and sent in letters through a link in this article. And why I prefer organic foods, even when allergies don't demand them.
Friday, January 02, 2009
It's a New Year...
Happy New Years!
2008 was...long. It was chalk full of good and bad, and yet the two went hand in hand so that I couldn't extract one from the other even if I were to try.
For anyone wondering, my reaction is subsiding. The last little bit (the part that drove me over the edge) was tracked down to a parenting choice. I chose to expose myself to airborne corn and gluten rather than leave my daughter crying at girl scouts. I don't know if I would change that decision, although I've been trying really hard to deny that it was what pushed me over the edge.
My abdomen still feels bruised, but I'm doing better and certainly more cheerful. The turn in my mood coming just in time to enjoy the final night of Hanukkah lights, and the warmth of good company. (A cold has since struck, but since my reaction to waking up with a scratchy throat and fever was to fall back in the pillows and laugh until I couldn't breathe, I think it's safe to say I'm feeling better.)
I just filled the freezer with gluten free brownies (that won't last long); there's a pot of rice in the fridge to make fried rice out of and a can of theoretically corn free tuna I'm debating about guinea pigging.
The big question being...do I really want to be a guinea pig when I've bee sick for a month? And the answer being no. But, I also want a low-fiber form of protein besides eggs. So I'm still flirting with the thought of tuna.
My list of New Years Resolutions is relatively simple and some of them utterly un-American Woman.
* Gain 10 pounds. Or however much I need to make that freaky floating rib disappear when I'm changing anywhere near a mirror.
* Find 3 recipes everyone in the family can and will eat. Healthy recipes...not desserts.
* Read. I'm thinking of taking the alphabet challenge...26 books, one for each letter of the alphabet. But I want to read non-fiction, too. I really want to brush up on current allergy/intolerance literature...it's just that some of it makes me too mad to continue.
*Make my dollars count. I'm going to strive to think about what each dollar represents, look for American Made goods and (ouch) pay a little extra to support local business. (I only said a LITTLE extra).
*Re-feather our nest egg. I still want a house before the kids grow up and jump ship...And a car that isn't a money pit.
As for last years resolutions?
They were cheesy.
But I did it.
I reintroduced pinto beans and peas to my diet; broadening my options a lot.
I also did a decent job avoiding plastic. The only plastic bags I brought into the house were from our Disney trip (I totally forgot to bring bags on vacation) and the Mervyn's clearance sale; when their clearance policy required purchases to be stapled into plastic bags. And we put enough into savings to keep us in our home (without selling our souls to the bank) until my husband found a job after his company went under.
Life's good.
2008 was...long. It was chalk full of good and bad, and yet the two went hand in hand so that I couldn't extract one from the other even if I were to try.
For anyone wondering, my reaction is subsiding. The last little bit (the part that drove me over the edge) was tracked down to a parenting choice. I chose to expose myself to airborne corn and gluten rather than leave my daughter crying at girl scouts. I don't know if I would change that decision, although I've been trying really hard to deny that it was what pushed me over the edge.
My abdomen still feels bruised, but I'm doing better and certainly more cheerful. The turn in my mood coming just in time to enjoy the final night of Hanukkah lights, and the warmth of good company. (A cold has since struck, but since my reaction to waking up with a scratchy throat and fever was to fall back in the pillows and laugh until I couldn't breathe, I think it's safe to say I'm feeling better.)
I just filled the freezer with gluten free brownies (that won't last long); there's a pot of rice in the fridge to make fried rice out of and a can of theoretically corn free tuna I'm debating about guinea pigging.
The big question being...do I really want to be a guinea pig when I've bee sick for a month? And the answer being no. But, I also want a low-fiber form of protein besides eggs. So I'm still flirting with the thought of tuna.
My list of New Years Resolutions is relatively simple and some of them utterly un-American Woman.
* Gain 10 pounds. Or however much I need to make that freaky floating rib disappear when I'm changing anywhere near a mirror.
* Find 3 recipes everyone in the family can and will eat. Healthy recipes...not desserts.
* Read. I'm thinking of taking the alphabet challenge...26 books, one for each letter of the alphabet. But I want to read non-fiction, too. I really want to brush up on current allergy/intolerance literature...it's just that some of it makes me too mad to continue.
*Make my dollars count. I'm going to strive to think about what each dollar represents, look for American Made goods and (ouch) pay a little extra to support local business. (I only said a LITTLE extra).
*Re-feather our nest egg. I still want a house before the kids grow up and jump ship...And a car that isn't a money pit.
As for last years resolutions?
They were cheesy.
But I did it.
I reintroduced pinto beans and peas to my diet; broadening my options a lot.
I also did a decent job avoiding plastic. The only plastic bags I brought into the house were from our Disney trip (I totally forgot to bring bags on vacation) and the Mervyn's clearance sale; when their clearance policy required purchases to be stapled into plastic bags. And we put enough into savings to keep us in our home (without selling our souls to the bank) until my husband found a job after his company went under.
Life's good.
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