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.
Welcome to my un-corny life...a series of vignettes interspersed among real food allergy (intolerance?) discussion.
Sunday, January 25, 2009
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.
Thursday, December 25, 2008
I want to take a moment to thank everyone for their support. I'm still dealing with a reaction, and some lingering depression; but I know that it's going to be short lived. (Okay, so I don't know. But I really, really hope it is...) And that helps.
Now, for the actual blog entry. The reason I've decided to leave my earlier ramble up is so that I can refer back to it; also so that others who deal with reactions can possibly relate. Any kind of GI trouble is so socially taboo that it feels isolating, it's not something we talk about. And when we feel better; we try not to think about it. Don't know about you, but I try really hard not to relive moments of physical pain.
Through the e-mails and message boards I frequent, I've been given a lot to consider regarding the relationship between depression and reactions; though I'm not a doctor and I haven't put it all together yet I'd like to start listing it here. I'm not writing at my best, so you'll have to bear with me.
First, and foremost, it's depressing not to feel well. It's even more frustrating when you feel as if you go above and beyond to isolate yourself, to be "different" and still you end up getting sick. Why not give in, live cheap and easy? You're just going to get sick anyways.
This is an "in-your-head" type reaction, but it's human and a valid response. I'm past the isolation, mostly. While I miss the idea of restaurants, I don't miss eating out because I did make the connection that they "hurt" me. And I think that a daily grind would drain me, even if it didn't make me collapse. But it is depressing to spend twice as much on food than a "normal" variation and then have trouble keeping it down.
On the physical level, it's worth noting that the gut is responsible for the production of seratonin. Seratonin is a hormone that affects mood. Most antidepressants work by increasing seratonin levels in the body.
GI reactions cause inflammation in the lining of the gut. In the case of celiac disease, actual physical damage is caused when the immune system kicks in and attacks the lining of the small intestine. Theoretically, this damage could (and would) affect the production of seratonin. Lowered levels of seratonin=depression.
Also of note, researchers recently found that people who are under a lot of stress at the onslaught of a reaction typically have longer or re-curring symptoms which do not respond effectively to medication (antihistamines). These reactions may be caused by increased levels of cytokines like IL-6 or stress hormones called catecholamines. This study was limited to participants experiencing typical environmental allergies---runny nose, watery eyes etc. However, since mild food allergies are treated with anti-histamines as well, one would think the theory should cross into the realm of food allergies.
This supports the frustrating fact that I, at least, find myself reacting worst when it's least convenient. (Like I volunteered to do yard duty or drive the carpool.) The incidents when I end up berating myself because it must be in my head may actually be in my cytokines. :P
I found more discussion on the connection between allergies and depression in an article from Ron Hoggan, MA and James Braly MD here:
Then there is the theory put forth by Dr. Theron Randolph; that some food induced reactions can cause "brain allergy". Dr. Abram Hoffer reports that depression and allergy often co-exist in his patients.
Lastly, but not least, a GI reaction causes inflammation. This inflammation affects the functioning of the GI tract, possibly for a long time after the original antibodies have subsided. As I was one told...If you scrape your knee, it doesn't matter what kind of knee-socks you wear. The fabric rubbing over it is going to keep the scrape raw. And it's difficult to rest your digestive tract. And if you do choose to fast, there's a recovery period. And when you're already at least 10 pounds underweight, then your recovery period is going to be longer. The prospect is daunting and a long recovery period can be likened to chronic illness, the stress of long periods of not feeling well coupled with a sense of "when is this going to hit again" would take a toll on anyone.
So, there it is. I'm not lying in bed letting the depression overtake me, I'm reading and learning more. Now, if only the medical personnel weren't trained to look at all the symptoms, shrug and say with a confident, sympathetic smile..."Hon, I think you're just under too much stress."
Sure, stress is a piece of the puzzle. But it isn't the only one.
Now, for the actual blog entry. The reason I've decided to leave my earlier ramble up is so that I can refer back to it; also so that others who deal with reactions can possibly relate. Any kind of GI trouble is so socially taboo that it feels isolating, it's not something we talk about. And when we feel better; we try not to think about it. Don't know about you, but I try really hard not to relive moments of physical pain.
Through the e-mails and message boards I frequent, I've been given a lot to consider regarding the relationship between depression and reactions; though I'm not a doctor and I haven't put it all together yet I'd like to start listing it here. I'm not writing at my best, so you'll have to bear with me.
First, and foremost, it's depressing not to feel well. It's even more frustrating when you feel as if you go above and beyond to isolate yourself, to be "different" and still you end up getting sick. Why not give in, live cheap and easy? You're just going to get sick anyways.
This is an "in-your-head" type reaction, but it's human and a valid response. I'm past the isolation, mostly. While I miss the idea of restaurants, I don't miss eating out because I did make the connection that they "hurt" me. And I think that a daily grind would drain me, even if it didn't make me collapse. But it is depressing to spend twice as much on food than a "normal" variation and then have trouble keeping it down.
On the physical level, it's worth noting that the gut is responsible for the production of seratonin. Seratonin is a hormone that affects mood. Most antidepressants work by increasing seratonin levels in the body.
GI reactions cause inflammation in the lining of the gut. In the case of celiac disease, actual physical damage is caused when the immune system kicks in and attacks the lining of the small intestine. Theoretically, this damage could (and would) affect the production of seratonin. Lowered levels of seratonin=depression.
Also of note, researchers recently found that people who are under a lot of stress at the onslaught of a reaction typically have longer or re-curring symptoms which do not respond effectively to medication (antihistamines). These reactions may be caused by increased levels of cytokines like IL-6 or stress hormones called catecholamines. This study was limited to participants experiencing typical environmental allergies---runny nose, watery eyes etc. However, since mild food allergies are treated with anti-histamines as well, one would think the theory should cross into the realm of food allergies.
This supports the frustrating fact that I, at least, find myself reacting worst when it's least convenient. (Like I volunteered to do yard duty or drive the carpool.) The incidents when I end up berating myself because it must be in my head may actually be in my cytokines. :P
I found more discussion on the connection between allergies and depression in an article from Ron Hoggan, MA and James Braly MD here:
...celiac disease would probably be found in a relatively small, but significant percentage, of those afflicted. The prior two conditions of enzyme deficiency and intestinal permeability are abundantly found when sought, and it is these features which, we suspect, dominate the segment of the population which is chronically depressed.Enzyme deficiency would cause insufficient digestion of cereal grains, which then convert to morphine-like substances that can then pass through the permeable intestinal wall. Causing depression and other side effects.
Then there is the theory put forth by Dr. Theron Randolph; that some food induced reactions can cause "brain allergy". Dr. Abram Hoffer reports that depression and allergy often co-exist in his patients.
Lastly, but not least, a GI reaction causes inflammation. This inflammation affects the functioning of the GI tract, possibly for a long time after the original antibodies have subsided. As I was one told...If you scrape your knee, it doesn't matter what kind of knee-socks you wear. The fabric rubbing over it is going to keep the scrape raw. And it's difficult to rest your digestive tract. And if you do choose to fast, there's a recovery period. And when you're already at least 10 pounds underweight, then your recovery period is going to be longer. The prospect is daunting and a long recovery period can be likened to chronic illness, the stress of long periods of not feeling well coupled with a sense of "when is this going to hit again" would take a toll on anyone.
So, there it is. I'm not lying in bed letting the depression overtake me, I'm reading and learning more. Now, if only the medical personnel weren't trained to look at all the symptoms, shrug and say with a confident, sympathetic smile..."Hon, I think you're just under too much stress."
Sure, stress is a piece of the puzzle. But it isn't the only one.
Monday, December 22, 2008
It's beginning to feel a lot like Christmas...
Despite my aforementioned physical issues at the moment, I did want to include a happy post today.
It's beginning to feel a lot like Christmas! Baking has rejoined our Christmas routine, and there is just something about my youngest helping me in the kitchen that makes things brighter. She takes great pleasure out of baking, and the stress involved is generally worth it.
Our latest creation is sugar cookies. We took a regular recipe, adapted it to suit our needs (with oil and rice flours), chilled it and broke out the cutting board and rolling pin. This was my first time using this rolling pin...bought brand new so that I could have the pleasure of baking again, but I haven't been motivated enough. (See, I'm not really depressed...)
I warned her in advance that new recipes don't usually come out that great the first time. That there would be some tweaking involved. That she should not dissolve into tears or throw anything if it wasn't working out the way she imagined. I shot my oldest a "look" and informed her that gluten cut out cookies are just as frustrating, the only difference being that "normal" flour has many more experimenters and is, well, a lot cheaper to fail with!
She huffed at me. My youngest opened her eyes very wide, nodded solemnly and promised not to get upset if we could only experiment. And we did!!!!
They're just as nummy as they look...even better; since they don't hurt my tummy and my husband claims they're better than regular sugar cookies. (With the caveat that he only eats regular sugar cookies because the snickerdoodles or oatmeal ones are gone.) We did lose a few angels to pan-sticking and other breakage...but I was very impressed and walking-on-air happy. You might need to try a few gluten free, er, "goodies" to fully appreciate the sensation.
Now, if only they'd lasted long enough to decorate with mini chocolate chips...Or, something else uncorny...
It's beginning to feel a lot like Christmas! Baking has rejoined our Christmas routine, and there is just something about my youngest helping me in the kitchen that makes things brighter. She takes great pleasure out of baking, and the stress involved is generally worth it.
Our latest creation is sugar cookies. We took a regular recipe, adapted it to suit our needs (with oil and rice flours), chilled it and broke out the cutting board and rolling pin. This was my first time using this rolling pin...bought brand new so that I could have the pleasure of baking again, but I haven't been motivated enough. (See, I'm not really depressed...)
I warned her in advance that new recipes don't usually come out that great the first time. That there would be some tweaking involved. That she should not dissolve into tears or throw anything if it wasn't working out the way she imagined. I shot my oldest a "look" and informed her that gluten cut out cookies are just as frustrating, the only difference being that "normal" flour has many more experimenters and is, well, a lot cheaper to fail with!
She huffed at me. My youngest opened her eyes very wide, nodded solemnly and promised not to get upset if we could only experiment. And we did!!!!
They're just as nummy as they look...even better; since they don't hurt my tummy and my husband claims they're better than regular sugar cookies. (With the caveat that he only eats regular sugar cookies because the snickerdoodles or oatmeal ones are gone.) We did lose a few angels to pan-sticking and other breakage...but I was very impressed and walking-on-air happy. You might need to try a few gluten free, er, "goodies" to fully appreciate the sensation.Now, if only they'd lasted long enough to decorate with mini chocolate chips...Or, something else uncorny...
Labels:
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parenting with food allergies
Depression, perhaps?
Although I've had this blog for some time, I don't think I've ever formally defined it's purpose.
I'm not sure anyone formally defines their blogs, so hopefully that isn't a problem!
Is it here to detail highlights of my life? To inform others of the trials of allergy free living? Perhaps it's an attempt to connect and say "you aren't alone" to strangers who are in their own "Can it really be just stress?" quandry. Or maybe it's a bit of everything. I know there are a few friends who follow faithfully, a few family members who drop by occassionally, and fellow allergy sufferers who pop by just to nod and agree...or shake their heads and say to themselves that they're glad they aren't THAT bad off. :P
I think today's post is directed at the latter.
I've been dealing with some sort of reaction for nearly a month now. I got a good dose of...something...just around Thanksgiving, vomiting and all that good stuff. It hit at a particularly poignant moment since I was dreading leaving the house and then conveniently ill.
Maybe it was stress?
But why hasn't it gone away? And why is it getting worse at moments when I want, very much, for it to get better?
I've found myself wondering which comes first, the reaction or depression. Because while it's much harder to deal with a reaction while depressed, the fact is that it's pretty depressing to feel like there's a shattered disco ball being used like a pin-ball machine in your abdomen, especially when the muscles are also feeling very sore and bruised. And then the chills set in, ironically I feel like it's a hundred degrees in here while my teeth are chattering loudly enough to accompany the CD player and I'm sweating. Ick.
The only difference between now and the days before I'd identified triggers are that I harbor hope. There's hope that I'll track the reaction down. I know what normal is, sort of. At least...I know this isn't it. And it isn't a constant tide of pain vs discomfort. There's bits of normalcy in there. There never used to be.
I'm hopeful, but I'm scared too. I don't want to deal with this on a regular basis. I don't like not knowing when it's going to hit. Whenever it DOES hit I get so skittish. I shun company, I hide out at home. I want to ignore the phone and the door and the call of the grocery store (It's not like I'm that hungry, after all.) I used to get the stomach flu, and it was a distant memory within the week.
Now, it's long and drawn out and there's very unnecessary weight loss involved...especially when it ISN'T the flu.
To be honest, the discomfort and embarrassing nature of this malady isn't the only thing I'm afraid of. I know I ought to slip into the doctor's office, recite my list of complaints along with their severity and wait for prognosis. And I know that it's not serious...I'm not even concerned that it might be serious. What scares me is the thought that there's nothing more to do.
I know I don't have something scary like Cancer. I'm lucky, very lucky! I also don't have something scary but treatable like diabetes. Again...I'm lucky. I can eat chocolate now and then! But the mystery digestive ailment that responds violently to comfort drugs and pops up mysteriously; tracked to triggers such as minute amounts of corn in the new tube of my usual toothpaste or helping the kids to decorate "real" gingerbread houses is getting to me. I wish I had something to say other than "I'm just not feeling well today," I feel so whiny. And I'm whining about whining which simply makes it worse!
At any rate, I go back to my checklist. Foods haven't changed drastically, or even that subtly. All the same ingredients, all the same brands, all the same labels (even on eggs). Maybe it isn't food. I'm more prone to reactions this time of year, usually tracked to a trigger but maybe I'm wrong? Maybe I'm crazy? (Wait, blind tests have proven there's SOMETHING physical occurring beyond the state of my psyche)
What about stress?
It's my official diagnosis, one I've been given countless times. Maybe I'm depressed, something I've considered as well.
The thing is, I'm more mad at my body than I am "stressed". And I feel too happy to really be "depressed", if that makes sense. I may not feel like going to a downtown museum and walking through the crowds of the Christmas displays but lying down and listening to my kids play with their nativity set makes me grin. And I enjoy the Christmas displays when there aren't elbows in my ribs and strangers feet tripping me. When I awaken beside a bedtime invader ("It's cold in my room!") I just lay and savor the weight of her body and the sound of her breathing. Candles burning in the menorah filled me with peace. I missed reading together when a child fell asleep before her bedtime book.
Would I feel that way if I were depressed?
The landlord stopped by unexpectedly, and caught me with the living room a mess and my baking unfinished. (At least the kids were dressed...) And I laughed, even at the gentle critique (Yes...my yard's a disaster, it's worse than the living room. It's cold out there for cleaning, though!). If stress were the issue, wouldn't that have tied my stomach in knots? Or wouldn't I lose my calm when I discover that there are beads, scissors and a flurry of paper snowflake-makings filling my now-recently vacuumed living room?
Okay, so I did think "why even bother"? But then the snowflakes made me smile. And if I were depressed, I wouldn't keep re-cleaning...would I?
I'm starting to wonder how many other allergy/digestive sufferers go through this process during a reaction. If you struggle with depression in conjunction with a reaction (but don't know if it's really depression) let me know I'm not alone! You can let me know if I'm crazy too...everyone else does :P And if you know of a good way to get through the emotional aspects of a reaction cycle, post that, too. It's the most frustrating part. Because sometimes it leads to not caring anymore. Whats the point if its not going to permanently cure me?
I know that eventually I'll be fine again. I know that it isn't just stress. I also know that it stresses me out, and that stress exacerbates things...so maybe it is stress to a degree. At any rate, I have to get better. I want to enjoy playing with the kids. We've got playgrounds to explore, and games to play, and recipes to adapt. Not to mention holidays to celebrate...
I'm not sure anyone formally defines their blogs, so hopefully that isn't a problem!
Is it here to detail highlights of my life? To inform others of the trials of allergy free living? Perhaps it's an attempt to connect and say "you aren't alone" to strangers who are in their own "Can it really be just stress?" quandry. Or maybe it's a bit of everything. I know there are a few friends who follow faithfully, a few family members who drop by occassionally, and fellow allergy sufferers who pop by just to nod and agree...or shake their heads and say to themselves that they're glad they aren't THAT bad off. :P
I think today's post is directed at the latter.
I've been dealing with some sort of reaction for nearly a month now. I got a good dose of...something...just around Thanksgiving, vomiting and all that good stuff. It hit at a particularly poignant moment since I was dreading leaving the house and then conveniently ill.
Maybe it was stress?
But why hasn't it gone away? And why is it getting worse at moments when I want, very much, for it to get better?
I've found myself wondering which comes first, the reaction or depression. Because while it's much harder to deal with a reaction while depressed, the fact is that it's pretty depressing to feel like there's a shattered disco ball being used like a pin-ball machine in your abdomen, especially when the muscles are also feeling very sore and bruised. And then the chills set in, ironically I feel like it's a hundred degrees in here while my teeth are chattering loudly enough to accompany the CD player and I'm sweating. Ick.
The only difference between now and the days before I'd identified triggers are that I harbor hope. There's hope that I'll track the reaction down. I know what normal is, sort of. At least...I know this isn't it. And it isn't a constant tide of pain vs discomfort. There's bits of normalcy in there. There never used to be.
I'm hopeful, but I'm scared too. I don't want to deal with this on a regular basis. I don't like not knowing when it's going to hit. Whenever it DOES hit I get so skittish. I shun company, I hide out at home. I want to ignore the phone and the door and the call of the grocery store (It's not like I'm that hungry, after all.) I used to get the stomach flu, and it was a distant memory within the week.
Now, it's long and drawn out and there's very unnecessary weight loss involved...especially when it ISN'T the flu.
To be honest, the discomfort and embarrassing nature of this malady isn't the only thing I'm afraid of. I know I ought to slip into the doctor's office, recite my list of complaints along with their severity and wait for prognosis. And I know that it's not serious...I'm not even concerned that it might be serious. What scares me is the thought that there's nothing more to do.
I know I don't have something scary like Cancer. I'm lucky, very lucky! I also don't have something scary but treatable like diabetes. Again...I'm lucky. I can eat chocolate now and then! But the mystery digestive ailment that responds violently to comfort drugs and pops up mysteriously; tracked to triggers such as minute amounts of corn in the new tube of my usual toothpaste or helping the kids to decorate "real" gingerbread houses is getting to me. I wish I had something to say other than "I'm just not feeling well today," I feel so whiny. And I'm whining about whining which simply makes it worse!
At any rate, I go back to my checklist. Foods haven't changed drastically, or even that subtly. All the same ingredients, all the same brands, all the same labels (even on eggs). Maybe it isn't food. I'm more prone to reactions this time of year, usually tracked to a trigger but maybe I'm wrong? Maybe I'm crazy? (Wait, blind tests have proven there's SOMETHING physical occurring beyond the state of my psyche)
What about stress?
It's my official diagnosis, one I've been given countless times. Maybe I'm depressed, something I've considered as well.
The thing is, I'm more mad at my body than I am "stressed". And I feel too happy to really be "depressed", if that makes sense. I may not feel like going to a downtown museum and walking through the crowds of the Christmas displays but lying down and listening to my kids play with their nativity set makes me grin. And I enjoy the Christmas displays when there aren't elbows in my ribs and strangers feet tripping me. When I awaken beside a bedtime invader ("It's cold in my room!") I just lay and savor the weight of her body and the sound of her breathing. Candles burning in the menorah filled me with peace. I missed reading together when a child fell asleep before her bedtime book.
Would I feel that way if I were depressed?
The landlord stopped by unexpectedly, and caught me with the living room a mess and my baking unfinished. (At least the kids were dressed...) And I laughed, even at the gentle critique (Yes...my yard's a disaster, it's worse than the living room. It's cold out there for cleaning, though!). If stress were the issue, wouldn't that have tied my stomach in knots? Or wouldn't I lose my calm when I discover that there are beads, scissors and a flurry of paper snowflake-makings filling my now-recently vacuumed living room?
Okay, so I did think "why even bother"? But then the snowflakes made me smile. And if I were depressed, I wouldn't keep re-cleaning...would I?
I'm starting to wonder how many other allergy/digestive sufferers go through this process during a reaction. If you struggle with depression in conjunction with a reaction (but don't know if it's really depression) let me know I'm not alone! You can let me know if I'm crazy too...everyone else does :P And if you know of a good way to get through the emotional aspects of a reaction cycle, post that, too. It's the most frustrating part. Because sometimes it leads to not caring anymore. Whats the point if its not going to permanently cure me?
I know that eventually I'll be fine again. I know that it isn't just stress. I also know that it stresses me out, and that stress exacerbates things...so maybe it is stress to a degree. At any rate, I have to get better. I want to enjoy playing with the kids. We've got playgrounds to explore, and games to play, and recipes to adapt. Not to mention holidays to celebrate...
Saturday, December 20, 2008
Dreaming
Last night, I half awoke to find myself...looking at myself. My child-self, laying there on my pillow. I smiled, and wondered to myself what was wrong with the nose, because you see--my nose looked wrong, it was too pretty. And, I never had freckles.
As I was coming awake to ponder the mysterious appearance of freckles on my child-face; the form beside me sighed, stretched, and the shadow of my husband briefly graced it's features (Ah! It's his nose. Sort of.)
And sleepy eyes blinked open, smiling sheepishly (now that's my husband's grin) and said, in my daughter's voice "I had a bad dream..."
Sometimes I forget they inherited more from me than allergies.
There's love of books, they both got that. And my oldest hates math as much as I did. The youngest is shy to an extreme at times. (Although, my husband claims a bit of responsibility for that) They're dreamers, and thinkers, and plotters and planners. Their imagination is vast and their dreams are big.
For all that they inherited, they are simply themselves, and I'm amazed each day that I was lucky enough to become their mother.
As I was coming awake to ponder the mysterious appearance of freckles on my child-face; the form beside me sighed, stretched, and the shadow of my husband briefly graced it's features (Ah! It's his nose. Sort of.)
And sleepy eyes blinked open, smiling sheepishly (now that's my husband's grin) and said, in my daughter's voice "I had a bad dream..."
Sometimes I forget they inherited more from me than allergies.
There's love of books, they both got that. And my oldest hates math as much as I did. The youngest is shy to an extreme at times. (Although, my husband claims a bit of responsibility for that) They're dreamers, and thinkers, and plotters and planners. Their imagination is vast and their dreams are big.
For all that they inherited, they are simply themselves, and I'm amazed each day that I was lucky enough to become their mother.
Monday, December 01, 2008
Giving Thanks
This Thanksgiving was far from stressful.
We decided to ignore the fact that we live near virtually all of our family, ignore our friends and just relax (Sorry guys!). I didn't have to worry about timing dinner, or about how it would taste to tastebuds other than our own. The house didn't have to be spotless. And we didn't have to go sit on anyone else's couch and pray that gluten crumbs avoided our safe dishes :P
It's funny how large a part food really plays in our life.
We had a relaxed morning, other than the fighting kids. (She's looking at me! "She looked at me first!" But, Mommy, I was just looking like this, not like THIS!) We quickly dragged those fussbudgets out on a Playground parade, but that's a different blog. Found a new letterbox, planted by a new letterboxing family. A new cool park, near a generic but fun one.
The unique excitement of the day was when we spotted 3 turkeys (or were they vultures?) eating an opossum by the side of the road.
Not the kind of thing you see very often in CA! Well, in our urban-esque neck of the woods, anyways. Opossums are in zoos. So are vultures. Turkeys live on farms and sometimes in Disneyland.
Our home cooked meal consisted of a mess of Sweet Potatoes peeled, chopped and roasted with onions and a bit of oil. Another attempt at stuffing (It's getting closer all the time!) Some Green Beans with margarine for the girls and turkey breast for the husband. Oldest ate a bit and said it was good...but not good enough to give up being vegetarian. (Whatever that means, she did choose to eat turkey...) I scrambled a few eggs for my own protein source, and told youngest she had to stare at the turkey on the table real hard, and look at my eggs without screaming. In exchange, she didn't even have to put it on her plate. I'm just grateful she tasted the sweet potatoes and stuffing. And gobbled down her green beans.
Dessert was pumpkin pie-scicles (courtesy of an adapted Family Fun recipe...the kids want more sugar and spice next time) and apple slices baked in chebe bread pockets. Wow! It was a veritable feast!
Now that it's over, we're left counting our blessings.
Like my youngest, I'm grateful for trees, and air.
Like my oldest, I'm grateful for allergy free food, and for the Warrior's series of books (or at least, that she's actually finishing books)
I'm also grateful that we have a roof over our heads.
I'm grateful for the nights the kids spend asleep in their own beds.
I'm thankful for dh's new job (and that for many months, our biggest worry was simply getting a new job.)
I'm thankful for my husband, even when I'm mad at him.
I'm thankful for my kids, even when I threaten to sell them to the gypsies.
I'm thankful for the few precious moments I steal to myself at bedtime, soaking in a warm hot bath. And I'm thankful for the voices that shatter my peace (although I'd rather they stayed in bed, quietly)
I'm thankful we have toys to strew across the floor, and that the kids still want us parents to play, too.
I'm thankful for the mornings I wake up with an elbow in my eye and pins and needles in my leg from a child draping themselves uncomfortably over me in the night.
As hard as it gets sometimes, the rough spots remind us how good the good can be.
The past year or so has been filled with a lot of hurt, and I'm grateful for that too. Because now I can see the light that lays ahead.
If you're reading this, may your holiday season and all your days be filled with light and blessings.
We decided to ignore the fact that we live near virtually all of our family, ignore our friends and just relax (Sorry guys!). I didn't have to worry about timing dinner, or about how it would taste to tastebuds other than our own. The house didn't have to be spotless. And we didn't have to go sit on anyone else's couch and pray that gluten crumbs avoided our safe dishes :P
It's funny how large a part food really plays in our life.
We had a relaxed morning, other than the fighting kids. (She's looking at me! "She looked at me first!" But, Mommy, I was just looking like this, not like THIS!) We quickly dragged those fussbudgets out on a Playground parade, but that's a different blog. Found a new letterbox, planted by a new letterboxing family. A new cool park, near a generic but fun one.
The unique excitement of the day was when we spotted 3 turkeys (or were they vultures?) eating an opossum by the side of the road.
Not the kind of thing you see very often in CA! Well, in our urban-esque neck of the woods, anyways. Opossums are in zoos. So are vultures. Turkeys live on farms and sometimes in Disneyland.
Our home cooked meal consisted of a mess of Sweet Potatoes peeled, chopped and roasted with onions and a bit of oil. Another attempt at stuffing (It's getting closer all the time!) Some Green Beans with margarine for the girls and turkey breast for the husband. Oldest ate a bit and said it was good...but not good enough to give up being vegetarian. (Whatever that means, she did choose to eat turkey...) I scrambled a few eggs for my own protein source, and told youngest she had to stare at the turkey on the table real hard, and look at my eggs without screaming. In exchange, she didn't even have to put it on her plate. I'm just grateful she tasted the sweet potatoes and stuffing. And gobbled down her green beans.
Dessert was pumpkin pie-scicles (courtesy of an adapted Family Fun recipe...the kids want more sugar and spice next time) and apple slices baked in chebe bread pockets. Wow! It was a veritable feast!
Now that it's over, we're left counting our blessings.
Like my youngest, I'm grateful for trees, and air.
Like my oldest, I'm grateful for allergy free food, and for the Warrior's series of books (or at least, that she's actually finishing books)
I'm also grateful that we have a roof over our heads.
I'm grateful for the nights the kids spend asleep in their own beds.
I'm thankful for dh's new job (and that for many months, our biggest worry was simply getting a new job.)
I'm thankful for my husband, even when I'm mad at him.
I'm thankful for my kids, even when I threaten to sell them to the gypsies.
I'm thankful for the few precious moments I steal to myself at bedtime, soaking in a warm hot bath. And I'm thankful for the voices that shatter my peace (although I'd rather they stayed in bed, quietly)
I'm thankful we have toys to strew across the floor, and that the kids still want us parents to play, too.
I'm thankful for the mornings I wake up with an elbow in my eye and pins and needles in my leg from a child draping themselves uncomfortably over me in the night.
As hard as it gets sometimes, the rough spots remind us how good the good can be.
The past year or so has been filled with a lot of hurt, and I'm grateful for that too. Because now I can see the light that lays ahead.
If you're reading this, may your holiday season and all your days be filled with light and blessings.
Sunday, November 23, 2008
"Make new friends, but keep the old; One is silver and the other gold..."
Youngest has started Daisy scouts, and the campfire favorite is stuck in my head.
"Does that mean that new friends are better than old friends?" One child asks.
"No," I reply, explaining that it's important to keep in touch with special friends but it's also important to play with lots of different people.
My oldest pipes up, informing me that silver is ever so much better than gold.
I agree that silver is pretty, and she rolls her eyes in a way that only tweenage girls can master. "Moooom, it's BETTER than gold. People do CRAZY things for gold. I wouldn't want Gold."
That girl. I love her but I worry about her. This is the same child who, when asked if she would like to be an actress when she grows up, thought very carefully on the subject and then said yes. She'd enjoy being an actress very much if "they" promised not to pay her any money.
Pardon?
That's right. Well, she amended, they might be able to pay her like 1 or 2 dollars. Or maybe enough to adopt a dolphin. But not a lot. She definitely doesn't want to be a millionaire. That sounds like too much responsibility.
Youngest on the other hand would like to have more holidays like St. Patricks Day and Easter, when she might find a few coins hidden specifically for her to find. She very seriously tells me that she needs more money, but chores are way too hard for someone whose only 6.
So am I doing something wrong? Or something right?
The hardest part about parenting is that I might never know...Unless they tell me in 20 or 30 years.
"Does that mean that new friends are better than old friends?" One child asks.
"No," I reply, explaining that it's important to keep in touch with special friends but it's also important to play with lots of different people.
My oldest pipes up, informing me that silver is ever so much better than gold.
I agree that silver is pretty, and she rolls her eyes in a way that only tweenage girls can master. "Moooom, it's BETTER than gold. People do CRAZY things for gold. I wouldn't want Gold."
That girl. I love her but I worry about her. This is the same child who, when asked if she would like to be an actress when she grows up, thought very carefully on the subject and then said yes. She'd enjoy being an actress very much if "they" promised not to pay her any money.
Pardon?
That's right. Well, she amended, they might be able to pay her like 1 or 2 dollars. Or maybe enough to adopt a dolphin. But not a lot. She definitely doesn't want to be a millionaire. That sounds like too much responsibility.
Youngest on the other hand would like to have more holidays like St. Patricks Day and Easter, when she might find a few coins hidden specifically for her to find. She very seriously tells me that she needs more money, but chores are way too hard for someone whose only 6.
So am I doing something wrong? Or something right?
The hardest part about parenting is that I might never know...Unless they tell me in 20 or 30 years.
Friday, November 07, 2008
My girl, my miracle
Last night was a rough night for my youngest. So I whispered, as I often do, that I love her. And I called her my little miracle.
Because that's what she is.
"Why?" she asked.
"Well, because," I answered. And again began the funny story of her birth.
You see, I thought I was pregnant. But the doctor said no.
And of course, in the end, she was born. Against a few odds.
The story makes her laugh. But it isn't what she wanted to hear.
"But why?" she insisted. Why indeed? Simply because. Because she lights up my days, because she makes me laugh, because she completes our family. Because she's her irreplaceable self. There are too many reasons to count. That doesn't satisfy her, either.
"Did you know you saved my life?" I finally say, and she sighs and snuggles close. If she hadn't been diagnosed with a nut allergy, the pediatrician would never have thought to look for allergies in her big sister. And if he hadn't put big sis on an allergen free diet, I wouldn't have noticed I felt better on one too. And then I never would have seen the allergist who told me my "panic attacks" sounded like anaphylactoid reactions.
More importantly, I'd never have spent a full day out and about at Disneyland. I'd never have spent hours at the park, and sitting through a 2 hour play would still be painful. The possibilities fill my mind and make me shiver. "You won't survive a year," echoes in my head. I keep those thoughts to myself. I wasn't living when I was sick, I was only surviving five minutes at a time.
"You saved me by teaching me how to save you," I tell her and she grins, and snuggles close and tells me she's my angel. And she is.
Because that's what she is.
"Why?" she asked.
"Well, because," I answered. And again began the funny story of her birth.
You see, I thought I was pregnant. But the doctor said no.
And of course, in the end, she was born. Against a few odds.
The story makes her laugh. But it isn't what she wanted to hear.
"But why?" she insisted. Why indeed? Simply because. Because she lights up my days, because she makes me laugh, because she completes our family. Because she's her irreplaceable self. There are too many reasons to count. That doesn't satisfy her, either.
"Did you know you saved my life?" I finally say, and she sighs and snuggles close. If she hadn't been diagnosed with a nut allergy, the pediatrician would never have thought to look for allergies in her big sister. And if he hadn't put big sis on an allergen free diet, I wouldn't have noticed I felt better on one too. And then I never would have seen the allergist who told me my "panic attacks" sounded like anaphylactoid reactions.
More importantly, I'd never have spent a full day out and about at Disneyland. I'd never have spent hours at the park, and sitting through a 2 hour play would still be painful. The possibilities fill my mind and make me shiver. "You won't survive a year," echoes in my head. I keep those thoughts to myself. I wasn't living when I was sick, I was only surviving five minutes at a time.
"You saved me by teaching me how to save you," I tell her and she grins, and snuggles close and tells me she's my angel. And she is.
Monday, October 27, 2008
The funny thing with mice...
If anyone is working on a better mouse trap (and hopefully it's a friendly mousetrap, you know...the kind that keeps the mice happy and alive at least until you can release them far, far away from your own house.) cheese is not the answer.
No, a mouse will pass up forgotten potato chip crumbs and stale fish crackers in favor of ancient, empty plastic easter eggs and plastic, enclosed ant baits. That can't be healthy.
Ew. And you don't want to know.
I wonder if that's stress, too? Or maybe they're just as wary of corn as I am?
:P
No, a mouse will pass up forgotten potato chip crumbs and stale fish crackers in favor of ancient, empty plastic easter eggs and plastic, enclosed ant baits. That can't be healthy.
Ew. And you don't want to know.
I wonder if that's stress, too? Or maybe they're just as wary of corn as I am?
:P
Friday, October 03, 2008
Fixing FAAN
On another board, I was asked what my solution is, since I don't think that FAAN is helping. Scratch that, I know that in their good intentions toward the 90% of food related life threatening reactions, they are hurting the rest of us.
This surprises many. Especially the ones who deal with food allergies every day. But it doesn't surprise those of us dealing with corn. Corn is everywhere, it's touted as hypoallergenic, and it doesn't have to be an ingredient in the traditional sense of the word to jump out and attack a sensitive individual. Many sufferers react to food they later find out was wrapped in corn dusted cryovac. The irritated CSRs tell us that these are company standards, federal standards, it's just the way things are. They don't have to tell us that the package has poison in it, just the food. (Sorry, but corn, to many, is poison.)
Maybe the most frustrating thing is that I actually see their point of view. It's just a bit, and of all their customers...just one doesn't matter. The odds are, to them, that one phone call is a fluke anyways. Someone who really doesn't "get" the way things work.
That's why I wish the FAAN were doing things differently.
If I were to design a "better" food labelling program, this is what I'd start:
*Labelling sources for all ingredients where feasible. Vitamins (including excipients), xanthum gum, etc all come from somewhere whether it's petroleum or corn or soy.
*All Customer Service Reps need to be trained minimally in the existence of food allergies and the broad range of reactions. Then they need to be able to access whether or not a product contains any specific ingredients. They can answer yes or no to specific questions without giving away secret recipes. (Asking doctors to call is not acceptable. It seems simple enough, but very few medical personnel have the time or energy to put into researching daily food. Or even meds, for that matter.)
*Source materials for packaging need to be logged as well. There are computer programs to cross reference things, in this day and age it shouldn't be impossible to get a straight answer within 24 hours.
*Allergen and source labeling need to extend to medications. The excipients in different brands of drugs can cause problems and that needs to be addressed.
*Most importantly, education. Any food can cause an adverse reaction. All adverse reactions are undesirable and only an individual can decide for themselves what the acceptable risk is. Therefore, individuals need access to information about their food supply. Period.
I'm not a member of FAAN because only 1 of the several people I've dealt with there have seemed remotely interested in the statistically insignificant allergies. And yet every company I contact seems to send me to FAAN. For the most part, they diplomatically refer me back to the FDA who kindly responds that I may want to contact the FAAN for more info.
I've found that companies are proud to comply with FAAN's top 8 guidelines, and yet get distant and suspicious when they are pressed for more info because those guidelines don't meet my needs. I'm happy with a simple life...but seriously, when apples aren't safe because they're waxed and plain grains of rice are dusted with cornstarch laden vitamins "for the consumers own good" things are getting a bit out of hand, don't you think?
It seems simpler to just disclose. Yeah, there's corn in this. Let me decide, in the end, what kind of risk that means for me.
This surprises many. Especially the ones who deal with food allergies every day. But it doesn't surprise those of us dealing with corn. Corn is everywhere, it's touted as hypoallergenic, and it doesn't have to be an ingredient in the traditional sense of the word to jump out and attack a sensitive individual. Many sufferers react to food they later find out was wrapped in corn dusted cryovac. The irritated CSRs tell us that these are company standards, federal standards, it's just the way things are. They don't have to tell us that the package has poison in it, just the food. (Sorry, but corn, to many, is poison.)
Maybe the most frustrating thing is that I actually see their point of view. It's just a bit, and of all their customers...just one doesn't matter. The odds are, to them, that one phone call is a fluke anyways. Someone who really doesn't "get" the way things work.
That's why I wish the FAAN were doing things differently.
If I were to design a "better" food labelling program, this is what I'd start:
*Labelling sources for all ingredients where feasible. Vitamins (including excipients), xanthum gum, etc all come from somewhere whether it's petroleum or corn or soy.
*All Customer Service Reps need to be trained minimally in the existence of food allergies and the broad range of reactions. Then they need to be able to access whether or not a product contains any specific ingredients. They can answer yes or no to specific questions without giving away secret recipes. (Asking doctors to call is not acceptable. It seems simple enough, but very few medical personnel have the time or energy to put into researching daily food. Or even meds, for that matter.)
*Source materials for packaging need to be logged as well. There are computer programs to cross reference things, in this day and age it shouldn't be impossible to get a straight answer within 24 hours.
*Allergen and source labeling need to extend to medications. The excipients in different brands of drugs can cause problems and that needs to be addressed.
*Most importantly, education. Any food can cause an adverse reaction. All adverse reactions are undesirable and only an individual can decide for themselves what the acceptable risk is. Therefore, individuals need access to information about their food supply. Period.
I'm not a member of FAAN because only 1 of the several people I've dealt with there have seemed remotely interested in the statistically insignificant allergies. And yet every company I contact seems to send me to FAAN. For the most part, they diplomatically refer me back to the FDA who kindly responds that I may want to contact the FAAN for more info.
I've found that companies are proud to comply with FAAN's top 8 guidelines, and yet get distant and suspicious when they are pressed for more info because those guidelines don't meet my needs. I'm happy with a simple life...but seriously, when apples aren't safe because they're waxed and plain grains of rice are dusted with cornstarch laden vitamins "for the consumers own good" things are getting a bit out of hand, don't you think?
It seems simpler to just disclose. Yeah, there's corn in this. Let me decide, in the end, what kind of risk that means for me.
I'm sure it's stress...
I'm worn out and cranky, that's all. I'm hyper sensitive and hormonal.
I'm embarrassed that my daughter's class needs help making papier mache, and I can't do it. The starch, the flour, the blowing up of balloons...all poison to me. And I'm a stay at home mom, I'm supposed to do these sorts of things. Some parents take time off of work. Hint, hint.
"So, you'll get sick. Big deal, you have time to spend a few days in bed," I hear myself thinking.
The landlord laughs at my complaint that I need a working sink because I can't eat out. Can't.
A stranger overhears my dinner frustration and says "Honey, that's when you pick up the phone and call for pizza." I can't? They wouldn't stand for that. They'd make the dr give them something.
My daughter remembers at 8pm that there's a party tomorrow and of course she's providing the cookies, she's the one with the allergy. Do you know how much it would cost to feed 30 kids store bought allergy free cookies? I turn on the oven.
I find an email in my inbox stating that they've decided to have a pizza party at an afterschool event, and they know that I'll be happy to send a safe alternative for my allergic daughter. I wouldn't want her to "feel left out".
We're invited to a party, don't bring anything! But they forgot the promised fruit plate and veggie tray. Oh well, it happens. We leave early, the kids are hungry.
I overhear a comment that "Those food allergy people need to grow up and learn to cook," in response to some news story. I read comments on boards suggesting that food allergies are in our head and I want to scream. Spike their food with ex-lax, send them to work and then shrug and innocently ask if they've considered stress as the culprit? Or maybe it's just in their head.
And then my mind wanders. I actually think those of us who deal with food allergies might manage stress more efficiently than "normal" people. Because we deal with it daily, a constant knowledge that each bite of dinner is a dance with danger. A kiss can be deadly. A lunch date needs an inordinate amount of planning, analyzing and agonizing. A simple invite to a kid's birthday party can become a feat of ingenuity to spare the host's feelings. And we appear to make it all work seamlessly, magically.
"I'd never manage," someone tells me when I finally break down and vent. But what other choice would they have?
I'm embarrassed that my daughter's class needs help making papier mache, and I can't do it. The starch, the flour, the blowing up of balloons...all poison to me. And I'm a stay at home mom, I'm supposed to do these sorts of things. Some parents take time off of work. Hint, hint.
"So, you'll get sick. Big deal, you have time to spend a few days in bed," I hear myself thinking.
The landlord laughs at my complaint that I need a working sink because I can't eat out. Can't.
A stranger overhears my dinner frustration and says "Honey, that's when you pick up the phone and call for pizza." I can't? They wouldn't stand for that. They'd make the dr give them something.
My daughter remembers at 8pm that there's a party tomorrow and of course she's providing the cookies, she's the one with the allergy. Do you know how much it would cost to feed 30 kids store bought allergy free cookies? I turn on the oven.
I find an email in my inbox stating that they've decided to have a pizza party at an afterschool event, and they know that I'll be happy to send a safe alternative for my allergic daughter. I wouldn't want her to "feel left out".
We're invited to a party, don't bring anything! But they forgot the promised fruit plate and veggie tray. Oh well, it happens. We leave early, the kids are hungry.
I overhear a comment that "Those food allergy people need to grow up and learn to cook," in response to some news story. I read comments on boards suggesting that food allergies are in our head and I want to scream. Spike their food with ex-lax, send them to work and then shrug and innocently ask if they've considered stress as the culprit? Or maybe it's just in their head.
And then my mind wanders. I actually think those of us who deal with food allergies might manage stress more efficiently than "normal" people. Because we deal with it daily, a constant knowledge that each bite of dinner is a dance with danger. A kiss can be deadly. A lunch date needs an inordinate amount of planning, analyzing and agonizing. A simple invite to a kid's birthday party can become a feat of ingenuity to spare the host's feelings. And we appear to make it all work seamlessly, magically.
"I'd never manage," someone tells me when I finally break down and vent. But what other choice would they have?
Saturday, August 09, 2008
And now I'm a dinosaur...
Ah, kids. They say the funniest things.
My kids do, anyways.
We were recently blessed with the visit of my 3 year old niece. At lunch time, she politely clambored up on a chair, ready to share the meal, but was just barely tall enough to see over the table.
I, of course, told my oldest to grab the phone book.
Blank stare.
"The what?"
"The phone book. You know, that big yellow book over on the shelf under the cookbooks."
She shook her head. My youngest piped up to tell me we didn't have a phone book.
I told them we did. I described it. I mentioned it as the thing we use to look up phone numbers sometimes.
My oldest frowned. "Uh, mommy, that's what the computer is for!"
And that's not all. After I finished laughing, and agreed with her, and my niece pointed out that she was a big girl and really didn't want to sit on a "boost" anyway (She could use her knees just fine); my kids asked more about the mysterious phone book. First I pointed out that we do have one, a current one, they just don't see me use it very often. (It's not like I call for take out every, well, ever actually...)I told them that the phone company sends it out and people used to use it all the time to look up phone numbers and addresses of stores and even each other. I used to sit on one at my Grandma's house when I was little.
My youngest nodded sagely said "Oh, you mean before they had TV."
And my oldest wanted to know if the radio had been invented yet.
What will they do when I confess that I used to have to find my way around without GPS?
My kids do, anyways.
We were recently blessed with the visit of my 3 year old niece. At lunch time, she politely clambored up on a chair, ready to share the meal, but was just barely tall enough to see over the table.
I, of course, told my oldest to grab the phone book.
Blank stare.
"The what?"
"The phone book. You know, that big yellow book over on the shelf under the cookbooks."
She shook her head. My youngest piped up to tell me we didn't have a phone book.
I told them we did. I described it. I mentioned it as the thing we use to look up phone numbers sometimes.
My oldest frowned. "Uh, mommy, that's what the computer is for!"
And that's not all. After I finished laughing, and agreed with her, and my niece pointed out that she was a big girl and really didn't want to sit on a "boost" anyway (She could use her knees just fine); my kids asked more about the mysterious phone book. First I pointed out that we do have one, a current one, they just don't see me use it very often. (It's not like I call for take out every, well, ever actually...)I told them that the phone company sends it out and people used to use it all the time to look up phone numbers and addresses of stores and even each other. I used to sit on one at my Grandma's house when I was little.
My youngest nodded sagely said "Oh, you mean before they had TV."
And my oldest wanted to know if the radio had been invented yet.
What will they do when I confess that I used to have to find my way around without GPS?
Saturday, August 02, 2008
That's One Way to Look at it...
On the brighter side, my family went to the school earlier. We were planning on spending the morning riding bikes, or at least...the kids would ride while my husband ran alongside shouting encouragement and I took pictures. It's a fun outing. And eventually my oldest even let him take a break and watch with me. :)
While there, the girls found some trash in the bushes. Some bottles, and bottletops. They read the lids and asked us about them. "Alcohol," we said, "Someone must have left those behind."
My oldest started explaining alcohol to the youngest, then. It's bad. It makes people go crazy, which is probably why they were loopy enough to litter, at a school of all places. (My husband and I had raised eyebrows, we aren't exactly prohibitionists, though we don't drink much.) Then she paused. "Except my teacher said red wine is good. It's really healthy and makes you relax if you drink a little bit and so I think we should have some a lot of the time when we grow up. But only for grown ups." She paused again, as my husband and I tried hard not laugh and asked each other whether the teacher had any idea what message she had gotten across.
"Except for Mommy, Mommy's allergic to wine, probably."
I nodded, I probably am. I wouldn't trust it. And frankly, I'm not interested enough in drinking to even take a chance. I can be goofy without alcohol, and heaven knows I'm capable of getting sick as a hangover on the most trivial seeming things.
Then her face lit up. "Mommy, you're allergic to going crazy!"
And my youngest took up the chant, and gave me a huge hug, "Yay, mommy can't go crazy! She's allergic!"
I guess that's one more blessing to count. I'm allergic to going crazy. :)
(I'll just remind myself of that fact the next time I argue with a customer service person on the telephone who's trying to tell me that corn isn't one of the top 8 and therefore isn't a "real" allergy.)
While there, the girls found some trash in the bushes. Some bottles, and bottletops. They read the lids and asked us about them. "Alcohol," we said, "Someone must have left those behind."
My oldest started explaining alcohol to the youngest, then. It's bad. It makes people go crazy, which is probably why they were loopy enough to litter, at a school of all places. (My husband and I had raised eyebrows, we aren't exactly prohibitionists, though we don't drink much.) Then she paused. "Except my teacher said red wine is good. It's really healthy and makes you relax if you drink a little bit and so I think we should have some a lot of the time when we grow up. But only for grown ups." She paused again, as my husband and I tried hard not laugh and asked each other whether the teacher had any idea what message she had gotten across.
"Except for Mommy, Mommy's allergic to wine, probably."
I nodded, I probably am. I wouldn't trust it. And frankly, I'm not interested enough in drinking to even take a chance. I can be goofy without alcohol, and heaven knows I'm capable of getting sick as a hangover on the most trivial seeming things.
Then her face lit up. "Mommy, you're allergic to going crazy!"
And my youngest took up the chant, and gave me a huge hug, "Yay, mommy can't go crazy! She's allergic!"
I guess that's one more blessing to count. I'm allergic to going crazy. :)
(I'll just remind myself of that fact the next time I argue with a customer service person on the telephone who's trying to tell me that corn isn't one of the top 8 and therefore isn't a "real" allergy.)
You Can't get to heaven without Gluten...
No, I don't believe it.
But, the woman who was going door to door trying to recruit for a new religious movement does. Or did. I'm not sure if I convinced her.
You see, I like to be nice to these people. I suppose that's the problem. They knock, offer to discuss theology and I smile and say I only have a minute but, sure, why not? I'm up front with the fact that I am a believer and not planning to convert. I know, I know...I present them with a challenge.
But I never walked away hurting before.
Today's evangelist is convinced that there is a Mother God in addition to (or perhaps combined with?) the well known "Father" God. I followed her reasoning, smiled and said I'd pray on it. Who am I to argue with a belief? I keep an open mind, and do my praying in private.
Then she asked if I realized that I couldn't get to heaven without taking part in Passover or Communion under the Mother God.
Um, what?
She went on, some scare tactics blanketed in a loving, concerned tone. She asked if I had ever taken part in a Passover or Communion. And her question shook me back to reality enough to sputter that I had a medical condition which prevented me from ingesting gluten grains.
Yes, even holy ones. They cause digestive damage.
"But, oh, you poor, then you can't..." the horror danced over her face, tears swam in her eyes, surely there was some way...but, just a little, it clearly states right here in Revelation that you must partake of the body and blood of Christ in order to gain entrance to heaven. You've never participated? Confusion, compassion, concern. Is this a heathen? Who can quote the bible back to me?
I was suddenly aware that my daughter was watching with wide eyes. I pulled my dignity around my shoulders like a cloaked, asked for the right words and managed to say in an even tone that if God saw fit to allow me this condition, known as Celiac Disease, then surely he wouldn't banish me from Heaven for not choosing to suffer the consequences.
She grasped my forearm, and gave me that "look". One you might give to someone you know isn't going to survive but there's nothing more you can do. And left.
Communion has been a sore spot with me for years. I wondered why my first Communion sat so uncomfortably in my stomach, and why I felt so nauseous after Communion Sundays. I quit going up front, at times I requested just the blessing.
Was God trying to tell me something?
I married a man who is half Jewish. In the Jewish culture, the Passover is celebrated with the drinking of wine and the ingesting of Matzoh. There's more to the celebration, much more, but those are the relevant points for food allergies.
Every year, around spring, the question of whether Matzoh is safe for Celiac patients comes up somewhere. And every so often, during my more reflective states, I notice the concern surrounding communion. Jesus broke bread, at the last supper (Which may or may not have been a proper Passover Seder) and instructed his disciples to break bread together, to share wine together, to eat and drink in remembrance of the sacrifice He made.
What happens when a true believer can't take and eat, or drink?
The Catholic Church has struggled with the answer, as have Rabbis. Surely God doesn't want his children to suffer intestinal damage simply for taking part in a religious ritual. And yet, what does that mean? Will he heal them for acting in faith? Or do we need to have faith that he will forgive us for abstaining?
It seems to me that the right route is often the harder one. And I doubt this case is any different. Just more emotional, because it's about devout believers debating their health versus eternal life.
I choose both. If suicide is a sin, then surely choosing to damage the body God gave you is one.
I'm not ashamed of that decision. But, the look I was given earlier continues to haunt me.
Another reminder that food is an integral part of our society. And when there is a restriction, it can impact you in the least expected ways.
But, the woman who was going door to door trying to recruit for a new religious movement does. Or did. I'm not sure if I convinced her.
You see, I like to be nice to these people. I suppose that's the problem. They knock, offer to discuss theology and I smile and say I only have a minute but, sure, why not? I'm up front with the fact that I am a believer and not planning to convert. I know, I know...I present them with a challenge.
But I never walked away hurting before.
Today's evangelist is convinced that there is a Mother God in addition to (or perhaps combined with?) the well known "Father" God. I followed her reasoning, smiled and said I'd pray on it. Who am I to argue with a belief? I keep an open mind, and do my praying in private.
Then she asked if I realized that I couldn't get to heaven without taking part in Passover or Communion under the Mother God.
Um, what?
She went on, some scare tactics blanketed in a loving, concerned tone. She asked if I had ever taken part in a Passover or Communion. And her question shook me back to reality enough to sputter that I had a medical condition which prevented me from ingesting gluten grains.
Yes, even holy ones. They cause digestive damage.
"But, oh, you poor, then you can't..." the horror danced over her face, tears swam in her eyes, surely there was some way...but, just a little, it clearly states right here in Revelation that you must partake of the body and blood of Christ in order to gain entrance to heaven. You've never participated? Confusion, compassion, concern. Is this a heathen? Who can quote the bible back to me?
I was suddenly aware that my daughter was watching with wide eyes. I pulled my dignity around my shoulders like a cloaked, asked for the right words and managed to say in an even tone that if God saw fit to allow me this condition, known as Celiac Disease, then surely he wouldn't banish me from Heaven for not choosing to suffer the consequences.
She grasped my forearm, and gave me that "look". One you might give to someone you know isn't going to survive but there's nothing more you can do. And left.
Communion has been a sore spot with me for years. I wondered why my first Communion sat so uncomfortably in my stomach, and why I felt so nauseous after Communion Sundays. I quit going up front, at times I requested just the blessing.
Was God trying to tell me something?
I married a man who is half Jewish. In the Jewish culture, the Passover is celebrated with the drinking of wine and the ingesting of Matzoh. There's more to the celebration, much more, but those are the relevant points for food allergies.
Every year, around spring, the question of whether Matzoh is safe for Celiac patients comes up somewhere. And every so often, during my more reflective states, I notice the concern surrounding communion. Jesus broke bread, at the last supper (Which may or may not have been a proper Passover Seder) and instructed his disciples to break bread together, to share wine together, to eat and drink in remembrance of the sacrifice He made.
What happens when a true believer can't take and eat, or drink?
The Catholic Church has struggled with the answer, as have Rabbis. Surely God doesn't want his children to suffer intestinal damage simply for taking part in a religious ritual. And yet, what does that mean? Will he heal them for acting in faith? Or do we need to have faith that he will forgive us for abstaining?
It seems to me that the right route is often the harder one. And I doubt this case is any different. Just more emotional, because it's about devout believers debating their health versus eternal life.
I choose both. If suicide is a sin, then surely choosing to damage the body God gave you is one.
I'm not ashamed of that decision. But, the look I was given earlier continues to haunt me.
Another reminder that food is an integral part of our society. And when there is a restriction, it can impact you in the least expected ways.
Saturday, June 07, 2008
Food Allergy study Rant
Apparently, hundreds of parents are simply crazy. Yes, folks, studies have shown that regardless of parental confidence in their children's "allergies"; medical facts can't prove that the kids do, medically speaking, react.
Poor children are being deprived of "life giving" nutrients because the parents are hypochondriacs. At least, according to some specific guidelines that don't appear to take into consideration the potential for outgrown allergies, or exageration of symptoms to invoke cooperation, or the possibility that the reaction is delayed or even needs time to build up because maybe, just maybe, these parents have done a decent job of avoiding exposure and thus reaction.
Now, I don't know about you, but I find it absurd that its even a question of who's right, dr's or parents. Do schools need to accommodate parental requests regarding what children are told to ingest? Do parents need to relinquish control since they are required to send their children to school anyways?
I think that we've reached a point where the schools are providing too many throw away foods period. The kids don't need it to begin with.
But no, it's the parents who have a problem. How dare we be concerned with kids health! How dare we deny them donuts! How dare we nix nuts! How can we possibly ban pizza?
Many children spend half their waking hours under supervision of their school. Most then skip off to daycare for a few hours before heading home for dinner and bed. Is it really unreasonable that parents are noting symptoms and looking for answers?
Attitudes such as this "Fake food allergies" make parents feel even more out of control. Because their valid concerns are undermined by those who side with statistics. Statistically, I'm not going to drop dead when I hand out popcorn at the spring fling. That doesn't mean that the nasty rash and intestinal discomfort I later experience (or even begin experiencing after a few minutes) isn't going to irritate the heck out of me. And my kids?
I want anyone in a position of authority over them to take this whole "certain foods cause unpleasant symptoms" thing seriously. That may mean labeling a "little intolerance" as an allergy. At least until the medical community gets their act together and comes up with an appropriate label to be used for those who need food restrictions but are not anaphylactic.
A hundred years ago, food allergies may not have been prolific. But, foods were easier to avoid. They weren't nearly as invasive. They were often "whole". Easy to identify. I don't know about you, but common sense tells me that if every time I ate cornbread I threw it up and spent the next several days in a good deal of discomfort, I wouldn't have even bothered tracking down a doctor and trading a few chickens for his diagnosis of "I wonder if it's something known as an allergy..." I'd have followed my instincts and stopped eating corn bread. And I'd probably have noticed in a hurry that Grandma's cornstarch thickened pudding bothered me too.
A hundred years ago, I'd have had a few other options. Not the ones I have now, perhaps. Tapioca, rice, buckwheat, quinoa, amaranth weren't well known and variety wasn't necessarily the spice of life. But, seriously...salad would have been safe. Potatoes, apples, water, milk...
Food intolerances need a label now because our society has changed. Parental wishes need to be followed because we are the parents. We are the ones who put the kids to bed at night and wake them up in the morning. We brought them into this world, and we have every right to not only keep them in it but keep them happy to be here. Some would call it an obligation.
I don't care if someone out there thinks that food allergies are some freudian fraud, or if they are simply another Darwinian method to thin the herd. I don't care how many people are actually at risk for anaphylaxis. I want it acknowledged that it is a valid threat.
I want it acknowledged that food can be fatal. I want it acknowledged that food is just food, it isn't the end of the world if you can't feed me or my kids. It isn't the center of all celebration. No one is suffering for lack of sugar, or need for pizza, or wasting away for the want of a PB&J. Food restrictions make life hard. And "studies" like this, that indicate people choosing to improve their or their children's health through dietary intervention are actually in need of a psychiatrist simply make life harder for those who have valid reasons for adapting their diet.
Even if we don't have a valid reason, if it makes us happy to avoid something like the plague who is it hurting to accept that choice?
Poor children are being deprived of "life giving" nutrients because the parents are hypochondriacs. At least, according to some specific guidelines that don't appear to take into consideration the potential for outgrown allergies, or exageration of symptoms to invoke cooperation, or the possibility that the reaction is delayed or even needs time to build up because maybe, just maybe, these parents have done a decent job of avoiding exposure and thus reaction.
Now, I don't know about you, but I find it absurd that its even a question of who's right, dr's or parents. Do schools need to accommodate parental requests regarding what children are told to ingest? Do parents need to relinquish control since they are required to send their children to school anyways?
I think that we've reached a point where the schools are providing too many throw away foods period. The kids don't need it to begin with.
But no, it's the parents who have a problem. How dare we be concerned with kids health! How dare we deny them donuts! How dare we nix nuts! How can we possibly ban pizza?
Many children spend half their waking hours under supervision of their school. Most then skip off to daycare for a few hours before heading home for dinner and bed. Is it really unreasonable that parents are noting symptoms and looking for answers?
Attitudes such as this "Fake food allergies" make parents feel even more out of control. Because their valid concerns are undermined by those who side with statistics. Statistically, I'm not going to drop dead when I hand out popcorn at the spring fling. That doesn't mean that the nasty rash and intestinal discomfort I later experience (or even begin experiencing after a few minutes) isn't going to irritate the heck out of me. And my kids?
I want anyone in a position of authority over them to take this whole "certain foods cause unpleasant symptoms" thing seriously. That may mean labeling a "little intolerance" as an allergy. At least until the medical community gets their act together and comes up with an appropriate label to be used for those who need food restrictions but are not anaphylactic.
A hundred years ago, food allergies may not have been prolific. But, foods were easier to avoid. They weren't nearly as invasive. They were often "whole". Easy to identify. I don't know about you, but common sense tells me that if every time I ate cornbread I threw it up and spent the next several days in a good deal of discomfort, I wouldn't have even bothered tracking down a doctor and trading a few chickens for his diagnosis of "I wonder if it's something known as an allergy..." I'd have followed my instincts and stopped eating corn bread. And I'd probably have noticed in a hurry that Grandma's cornstarch thickened pudding bothered me too.
A hundred years ago, I'd have had a few other options. Not the ones I have now, perhaps. Tapioca, rice, buckwheat, quinoa, amaranth weren't well known and variety wasn't necessarily the spice of life. But, seriously...salad would have been safe. Potatoes, apples, water, milk...
Food intolerances need a label now because our society has changed. Parental wishes need to be followed because we are the parents. We are the ones who put the kids to bed at night and wake them up in the morning. We brought them into this world, and we have every right to not only keep them in it but keep them happy to be here. Some would call it an obligation.
I don't care if someone out there thinks that food allergies are some freudian fraud, or if they are simply another Darwinian method to thin the herd. I don't care how many people are actually at risk for anaphylaxis. I want it acknowledged that it is a valid threat.
I want it acknowledged that food can be fatal. I want it acknowledged that food is just food, it isn't the end of the world if you can't feed me or my kids. It isn't the center of all celebration. No one is suffering for lack of sugar, or need for pizza, or wasting away for the want of a PB&J. Food restrictions make life hard. And "studies" like this, that indicate people choosing to improve their or their children's health through dietary intervention are actually in need of a psychiatrist simply make life harder for those who have valid reasons for adapting their diet.
Even if we don't have a valid reason, if it makes us happy to avoid something like the plague who is it hurting to accept that choice?
Wednesday, April 30, 2008
Corn. It can cost a Kidney.
The true risks of a corn allergy hit home last week.
I awoke with the tell tale signs of a UTI. Thankfully, I recognized them and decided to get seen and tested ASAP. Urinalysis showed blood and the early stages of an infection. I was written a script, and sent on my way.
The pharmacist showed me the ingredients for the antibiotic of choice. Most of them were corn derived. The company that manufacturers is was closed for the evening. The compounding pharmacist said "We'll get back to you."
The next day, the antibiotic manufacturer didn't want to talk to me, because I'm not a doctor. No big deal, I was almost feeling better. I chugged water like crazy, rested, and waited for the compounding pharmacist.
The third day I did not feel well. The doctor called to see how I was doing. I told them, and they wanted to see me. They asked how long I'd been taking the antibiotic.
"You don't even have it yet?"
There was a sense of incredulity. Here is a simple to treat infection. One of the few that demands immediate treatment with an appropriate antibiotic. One that can be serious if left untreated. One that we have an appropriate medication for. Widely available. Well known.
And yet I, personally, could not access it.
I talked to the doctor for a long time. My options were to start the antibiotic, and ignore the corn. This would cause symptoms. The symptoms probably would not be life threatening. But, they would interfere with knowledge of whether or not the infection was responding to treatment. The medical community would not know if I was reacting to the antibiotic or the corn. I'd be dealing with 2 forms of physical stress. And it would lengthen my recovery time (the last I add in from experience. Corn causes intestinal inflammation, and I have digestive issues for weeks after accidentally ingesting it)
I could also be hospitalized for an IV infusion. This would bypass my digestive tract. It would probably avoid causing me much of a reaction, assuming they didn't use a corn based IV solution. (Yeah, I'd be checking each time. I'm sure the nurses would want to go on automatic, and be frustrated that they couldn't) It would cost a fortune. It's overkill for a run of the mill UTI.
I could wait, do nothing and lose a kidney.
We decided to start a different antibiotic, one that didn't have corn but was not specific. It would hopefully do *something* while we waited for the culture to come back with the exact strain of bacteria that had invaded my urinary tract.
By this time, my back hurt. That meant it had entered my kidney. We were frustrated that a "normal" person would have been almost through with their antibiotic course by this time, and relatively symptom free. I was getting worse, and not because I was obstinate or trying to ignore medical advice. I wanted help. They just didn't know how.
The pharmacist could not guarantee the brand, and the capsules could have corn in them though the drug itself, amoxicillin, was not adulterated. So I agreed to open the capsule, and take it in applesauce or another semi-liquid. The taste reminded me of the pink stuff I took when I was a kid, except that it didn't make my stomach clench and wasn't accompanied by a revolting bubblegum aftertaste. For future reference, antibiotics are better masked in carrot soup than applesauce.
The antibiotic worked for a few days. I woke up Monday feeling worse again, and shortly afterward the doctor's office called to say that the bacteria was resistant to amoxicillin. Then I got a hold of the compounding pharmacist, again, who apologized for taking so long and promised to get my Cipro by evening.
2 days on antibiotics, a week of frantic calls and office visits, and the only symptom still bothering me is an intermittent back pain and some nausea, which is common on antibiotics across the board. Kidney involvement is always risky, and permanent damage is a very real possibility.
All this simply because...there's corn in that. There's corn in everything, and no one knows it. Generally, I laugh. It's funny, people hear corn and they can't see the big picture. A little here, a little there. The FAAN calls it hypoallergenic. It's known by a thousand names. It has a myriad of uses, and growing. It took years to learn what I know to stay relatively safe. And yet, when I most need my knowledge, when it's necessary to turn to the medical community and work together for a solution, we're both lost. The pharmacist can't tell me what antibiotics might not have corn in them. The doctor can't find the information she needs to choose the best of a limited amount of pre-made corn free medications. And this time, my needs were simple. What happens next time?
Statistically, few people react to the excipients of drugs. I'm lucky. I'm just a statistic. One in a million. Insignificant. Unique.
But I exist. And I'd like to keep my kidneys, thank you very much.
I awoke with the tell tale signs of a UTI. Thankfully, I recognized them and decided to get seen and tested ASAP. Urinalysis showed blood and the early stages of an infection. I was written a script, and sent on my way.
The pharmacist showed me the ingredients for the antibiotic of choice. Most of them were corn derived. The company that manufacturers is was closed for the evening. The compounding pharmacist said "We'll get back to you."
The next day, the antibiotic manufacturer didn't want to talk to me, because I'm not a doctor. No big deal, I was almost feeling better. I chugged water like crazy, rested, and waited for the compounding pharmacist.
The third day I did not feel well. The doctor called to see how I was doing. I told them, and they wanted to see me. They asked how long I'd been taking the antibiotic.
"You don't even have it yet?"
There was a sense of incredulity. Here is a simple to treat infection. One of the few that demands immediate treatment with an appropriate antibiotic. One that can be serious if left untreated. One that we have an appropriate medication for. Widely available. Well known.
And yet I, personally, could not access it.
I talked to the doctor for a long time. My options were to start the antibiotic, and ignore the corn. This would cause symptoms. The symptoms probably would not be life threatening. But, they would interfere with knowledge of whether or not the infection was responding to treatment. The medical community would not know if I was reacting to the antibiotic or the corn. I'd be dealing with 2 forms of physical stress. And it would lengthen my recovery time (the last I add in from experience. Corn causes intestinal inflammation, and I have digestive issues for weeks after accidentally ingesting it)
I could also be hospitalized for an IV infusion. This would bypass my digestive tract. It would probably avoid causing me much of a reaction, assuming they didn't use a corn based IV solution. (Yeah, I'd be checking each time. I'm sure the nurses would want to go on automatic, and be frustrated that they couldn't) It would cost a fortune. It's overkill for a run of the mill UTI.
I could wait, do nothing and lose a kidney.
We decided to start a different antibiotic, one that didn't have corn but was not specific. It would hopefully do *something* while we waited for the culture to come back with the exact strain of bacteria that had invaded my urinary tract.
By this time, my back hurt. That meant it had entered my kidney. We were frustrated that a "normal" person would have been almost through with their antibiotic course by this time, and relatively symptom free. I was getting worse, and not because I was obstinate or trying to ignore medical advice. I wanted help. They just didn't know how.
The pharmacist could not guarantee the brand, and the capsules could have corn in them though the drug itself, amoxicillin, was not adulterated. So I agreed to open the capsule, and take it in applesauce or another semi-liquid. The taste reminded me of the pink stuff I took when I was a kid, except that it didn't make my stomach clench and wasn't accompanied by a revolting bubblegum aftertaste. For future reference, antibiotics are better masked in carrot soup than applesauce.
The antibiotic worked for a few days. I woke up Monday feeling worse again, and shortly afterward the doctor's office called to say that the bacteria was resistant to amoxicillin. Then I got a hold of the compounding pharmacist, again, who apologized for taking so long and promised to get my Cipro by evening.
2 days on antibiotics, a week of frantic calls and office visits, and the only symptom still bothering me is an intermittent back pain and some nausea, which is common on antibiotics across the board. Kidney involvement is always risky, and permanent damage is a very real possibility.
All this simply because...there's corn in that. There's corn in everything, and no one knows it. Generally, I laugh. It's funny, people hear corn and they can't see the big picture. A little here, a little there. The FAAN calls it hypoallergenic. It's known by a thousand names. It has a myriad of uses, and growing. It took years to learn what I know to stay relatively safe. And yet, when I most need my knowledge, when it's necessary to turn to the medical community and work together for a solution, we're both lost. The pharmacist can't tell me what antibiotics might not have corn in them. The doctor can't find the information she needs to choose the best of a limited amount of pre-made corn free medications. And this time, my needs were simple. What happens next time?
Statistically, few people react to the excipients of drugs. I'm lucky. I'm just a statistic. One in a million. Insignificant. Unique.
But I exist. And I'd like to keep my kidneys, thank you very much.
Sunday, December 23, 2007
Martyrdom: The strange side effect of a glutening.
I'm learning, slowly, what a gluten exposure really looks like. Not the big shebang. That's obvious, and painful, and I get through it because I recognize it quickly for what it is. But the little, insidious glutening that occurs when you walk through a bakery and can almost taste the sweet poison. When you help a child decorate a gingerbread house, made with real gingerbread. When you sit down and play with the playdoh, too, and forget to remind the kids to scrub their hands afterwards.
At first, it's not much. I think "Oh, I hope I don't pay for that later!" hold my breath, and go about my day. Later, I may notice an upset stomach. But, I can deal with it. Maybe some itching. Again, I can handle it.
I find myself thinking, "Maybe I'm coming down with something." And maybe I am.
I'm tired. Not sleepy. But I don't relate it to gluten. I just feel lazy. The only connection I make is when I find myself craving gluten, and tell myself (and sometimes my husband) that I'm lucky. Mild stomach issues, and a bunch of cravings. I can handle this. I hope it passes soon.
I go to the grocery store. I feel overwhelmed. I don't feel like cooking, what can I get for the kids?
I buy gluten. The bread looks tempting. I can avoid it, easily. We'll watch for crumbs. Oh, and look at those scones. My youngest will love them. I'll get frozen dairy free pizza for oldest, she deserves a treat. I'll be careful with which pans I use. Crackers. Those look good. Oh, lets get a bunch. I'll just vacuum the living room carefully. They'll make a good snack.
And I go on. At the check out counter, I realize I have cashew butter, eggs and a bunch of food for the rest of my family. Huh. Well, no matter, I don't feel like cooking. I'll eat "something". Next time, yes, next time I'll be more organized.
Except that soon, there are crumbs on the counter that I don't feel like chasing down. I'm scatterbrained and cranky. I'm behind on the dishes. I make their dinner, and while they eat I carefully prepare mine on an ever shrinking "clean space" to avoid gluten or corn contamination. They can't help because the risk of gluten cross contamination rises, so they grumble. I think, again and again, that they are suffering because of me. The more gluten there is in the house, the harder it becomes to keep things clean. More than once, I toss the entire silverware drawer into the dishwasher because someone reaches in with a contaminated hand.
I start to feel like this is my job, to let them be "normal" and just work harder. I can manage with just a little extra work. I can avoid crumbs. I can live with an occasional, mild reaction. I'm better now, so much better than I was. And it's true. I am.
Slowly, I feel more overwhelmed with less stimuli. I lose my ability to step back, smile and say "Wait a minute, one at a time." We run out of bread and I panic. What will the kids eat? I have a bad day, a stay at home kind of day, and chalk it up to IBS. And stress. Because, of course, it really all boils down to stress. Didn't the doctors spend years telling me it was stress? I guess they were right. Look at the superhuman measures I've been taking to avoid eating the wrong food. To avoid cross contamination. It can't be gluten. It can't be corn. And yet, here I am, with this knot in my stomach, and the swishing crampy nausea. It's stress, probably from trying so hard to avoid the wrong foods. Yes, that's it. I need to adjust. Whats wrong with me? Why aren't I used to this by now?
And then, I get a hive or two. At first, I say something bit me. Then I call it a rash, or a pimple (pimples probably aren't supposed to itch and ache like crazy, or go away when you take Claritin D12, but I ignore that fact for now.) And then, I wonder why life got so stressful.
The kitchen comes into clearer focus. My daughter hugs me with gritty, gluten-crumb hands. Hands that hit right where the rash or pimples are cropping up.
And truth slaps me in the face. It's the gluten, you idiot. It's everywhere, there are crumbs on the sofa, on the kitchen table. What have the kids eaten recently that you weren't allergic to?
A sense of de ja vu strikes. I know this feeling, this moment of realization. It happens 2 or 3 weeks after a mild glutening, when the symptoms are mild but persistent, when I think I'm fighting off an infection. When slowly I let the danger foods creep into my kids diet, and I tell myself that I have to. I have to let them eat that stuff. I can't afford to feed them my safe foods. They won't like my foods as much, and its so much effort. I stop coking much for myself, because I'm busy keeping them fed with convenience foods. (Ironic that they seem to take up so much more of my time than cooking whole foods)
It's not that much effort, by the way. And they love a variety of foods that I make safely for everyone. But once in awhile, when the gluten gets me down, I let the doubts creep in. A mild depression settles in, accompanied by brain fog. And I become the martyr.
It's time to scrub the counters, clean out the cupboards, and regain control of my life. Because I'm not a martyr. I'm a mom. I can't be a good mom if I'm only 60%. And part of parenting involves teaching the kids family cooperation, how to participate in planning and preparing meals, and budgeting skills. A minimal gluten house won't hurt them.
But a glutened house certainly hurts us all.
At first, it's not much. I think "Oh, I hope I don't pay for that later!" hold my breath, and go about my day. Later, I may notice an upset stomach. But, I can deal with it. Maybe some itching. Again, I can handle it.
I find myself thinking, "Maybe I'm coming down with something." And maybe I am.
I'm tired. Not sleepy. But I don't relate it to gluten. I just feel lazy. The only connection I make is when I find myself craving gluten, and tell myself (and sometimes my husband) that I'm lucky. Mild stomach issues, and a bunch of cravings. I can handle this. I hope it passes soon.
I go to the grocery store. I feel overwhelmed. I don't feel like cooking, what can I get for the kids?
I buy gluten. The bread looks tempting. I can avoid it, easily. We'll watch for crumbs. Oh, and look at those scones. My youngest will love them. I'll get frozen dairy free pizza for oldest, she deserves a treat. I'll be careful with which pans I use. Crackers. Those look good. Oh, lets get a bunch. I'll just vacuum the living room carefully. They'll make a good snack.
And I go on. At the check out counter, I realize I have cashew butter, eggs and a bunch of food for the rest of my family. Huh. Well, no matter, I don't feel like cooking. I'll eat "something". Next time, yes, next time I'll be more organized.
Except that soon, there are crumbs on the counter that I don't feel like chasing down. I'm scatterbrained and cranky. I'm behind on the dishes. I make their dinner, and while they eat I carefully prepare mine on an ever shrinking "clean space" to avoid gluten or corn contamination. They can't help because the risk of gluten cross contamination rises, so they grumble. I think, again and again, that they are suffering because of me. The more gluten there is in the house, the harder it becomes to keep things clean. More than once, I toss the entire silverware drawer into the dishwasher because someone reaches in with a contaminated hand.
I start to feel like this is my job, to let them be "normal" and just work harder. I can manage with just a little extra work. I can avoid crumbs. I can live with an occasional, mild reaction. I'm better now, so much better than I was. And it's true. I am.
Slowly, I feel more overwhelmed with less stimuli. I lose my ability to step back, smile and say "Wait a minute, one at a time." We run out of bread and I panic. What will the kids eat? I have a bad day, a stay at home kind of day, and chalk it up to IBS. And stress. Because, of course, it really all boils down to stress. Didn't the doctors spend years telling me it was stress? I guess they were right. Look at the superhuman measures I've been taking to avoid eating the wrong food. To avoid cross contamination. It can't be gluten. It can't be corn. And yet, here I am, with this knot in my stomach, and the swishing crampy nausea. It's stress, probably from trying so hard to avoid the wrong foods. Yes, that's it. I need to adjust. Whats wrong with me? Why aren't I used to this by now?
And then, I get a hive or two. At first, I say something bit me. Then I call it a rash, or a pimple (pimples probably aren't supposed to itch and ache like crazy, or go away when you take Claritin D12, but I ignore that fact for now.) And then, I wonder why life got so stressful.
The kitchen comes into clearer focus. My daughter hugs me with gritty, gluten-crumb hands. Hands that hit right where the rash or pimples are cropping up.
And truth slaps me in the face. It's the gluten, you idiot. It's everywhere, there are crumbs on the sofa, on the kitchen table. What have the kids eaten recently that you weren't allergic to?
A sense of de ja vu strikes. I know this feeling, this moment of realization. It happens 2 or 3 weeks after a mild glutening, when the symptoms are mild but persistent, when I think I'm fighting off an infection. When slowly I let the danger foods creep into my kids diet, and I tell myself that I have to. I have to let them eat that stuff. I can't afford to feed them my safe foods. They won't like my foods as much, and its so much effort. I stop coking much for myself, because I'm busy keeping them fed with convenience foods. (Ironic that they seem to take up so much more of my time than cooking whole foods)
It's not that much effort, by the way. And they love a variety of foods that I make safely for everyone. But once in awhile, when the gluten gets me down, I let the doubts creep in. A mild depression settles in, accompanied by brain fog. And I become the martyr.
It's time to scrub the counters, clean out the cupboards, and regain control of my life. Because I'm not a martyr. I'm a mom. I can't be a good mom if I'm only 60%. And part of parenting involves teaching the kids family cooperation, how to participate in planning and preparing meals, and budgeting skills. A minimal gluten house won't hurt them.
But a glutened house certainly hurts us all.
Monday, December 17, 2007
A little bit of Sympathy
My daughter is 9. She's allergic to dairy. It's not serious, but its uncomfortable and her suffering seems lengthy, so we avoid dairy like the plague. She's also allergic to blue dye (Well, not technically, but it gives her a migraine) so there are few "regular" treats that she enjoys.
Last week she told me that school was unfair, and she hates parties. Apparently, they regularly serve popcorn for treats, there have been birthday parties she couldn't participate in, and now a pizza party was being planned.
For the first time ever, she's feeling isolated in school. My heart bled for her, as I asked what she needed.
I reminded her the teacher knows about her allergy. She nodded.
I reminded her, gently, that we couldn't ask them to provide safe treats for her, specifically. I don't trust them to label read. She knows, she says, she doesn't care, really.
I told her we couldn't ask them to stop having parties, and she told me I was crazy, she doesn't want them to stop having parties, either. (This, I admit, confused me since she hates parties)
I asked about sending a safe treat for her to keep on hand. She shook her head.
I held her for awhile, just trying to comfort her. And then she looked up at me, tears glistening in her eyes.
"I just want the teacher to know, mom, I want her to know I have a dairy allergy. And I want her to say 'I'm sorry, you can't have this tomorrow, but maybe you can bring your own treat.' Then I'd feel better."
Just a few words of sympathy, acknowledgment. Its often forgotten in our rush, in our knowledge that people understand a situation is unfair. And yet, somehow, it can go a long ways towards lightening a burden.
Last week she told me that school was unfair, and she hates parties. Apparently, they regularly serve popcorn for treats, there have been birthday parties she couldn't participate in, and now a pizza party was being planned.
For the first time ever, she's feeling isolated in school. My heart bled for her, as I asked what she needed.
I reminded her the teacher knows about her allergy. She nodded.
I reminded her, gently, that we couldn't ask them to provide safe treats for her, specifically. I don't trust them to label read. She knows, she says, she doesn't care, really.
I told her we couldn't ask them to stop having parties, and she told me I was crazy, she doesn't want them to stop having parties, either. (This, I admit, confused me since she hates parties)
I asked about sending a safe treat for her to keep on hand. She shook her head.
I held her for awhile, just trying to comfort her. And then she looked up at me, tears glistening in her eyes.
"I just want the teacher to know, mom, I want her to know I have a dairy allergy. And I want her to say 'I'm sorry, you can't have this tomorrow, but maybe you can bring your own treat.' Then I'd feel better."
Just a few words of sympathy, acknowledgment. Its often forgotten in our rush, in our knowledge that people understand a situation is unfair. And yet, somehow, it can go a long ways towards lightening a burden.
Wednesday, December 05, 2007
The Gift of Guilt
It's that time of year again.
We drive down the street amidst sparkling multicolored lights, inflatable santa's wave cheerfully in the wind, and in the stores lines wind around bright displays of tempting last minute "perfect gift" merchandise.
I love this time of year. I love the lights, the sounds of carols, and the scent of holiday baking. I love the chill in the air (as long as I don't have to be out for too long) and like most people I start longing for the taste of my favorite treats. Unlike most people, I will be making any (and every) thing myself.
Like many people out there, I have food allergies. Of course, if you're reading this blog you already knew that. For some reason holidays can be the hardest. This year, I'm simply grateful for the opportunity to eat a small variety of treats. I'm working on expanding my diet (carefully testing a few new foods. Hoping I can tolerate tomato now, or maybe some nice pinto beans. Not exactly holiday themed, but they do add to the menu.)
I'm also reading up on posts from various forums, and thinking back on years past. Sprinkled throughout the anticipatory ramblings of some members is always a thin, but constant note of dissent. Some people dread the holidays.
And it isn't because they don't like carols, or the festive mood. They don't seem to dread the lines, or wrapping gifts or even shopping. The most voiced complaints? Generic gifts.
It's not that these people are ungrateful. The comments are almost always made in the midst of a post about "what should I get for this person I don't know very well, but really want to remember for the holidays this year." They're softened with the sentiment that "it IS the thought that counts..." but, well, there is that BUT.
Perfume, bath lotions, fancy body lotions and food are some of the nation's favorite "I really don't know you...but you're human, so enjoy" gifts. Popular for teenage nieces and nephews, for long lost cousins and that coworker you've never really seen but know is lurking behind an office door, these items are loved by many. (At least, one presumes that they are enjoyed by someone, since they sell so well.) But they are also very personal items. And there are many giftees who become emotional on the subject.
It's not that they think the giver is inconsiderate. Or even that they take the gift to mean "Here, have a batch of hives and a trip to the ER for Christmas!" They know that it's the gift that counts. They appreciate the thought, time and cash that this tacit remembrance cost. The real root of their complaint seems to be the underlying guilt associated with not being able to appreciate it. Or even to explore a new, potentially exciting product. And, deep down, the strong desire to enjoy it, as the giver most likely hopes they will.
People know that its not the gift that counts, but sometimes the thought means much more than a package. Some people would truly appreciate a card much more than a plate of homemade brownies (especially if the receiver is allergic to nuts and the brownies are studded with pecans.) And frankly, some givers seem intent on simply providing shiny paper and lots of bows. The receiver is little more than a name on their list. In some cases, its fine. But when you know someone won't be able to eat the popcorn in the popcorn tin its just a waste of money and energy to wrap it up for them. Saying it's the thought that counts won't change that. In fact, when one intentionally hands another person something that they already know won't be enjoyed by the receiver, the thought comes through loud and clear, and not the way one hopefully intended.
This year, I hope we all avoid the gift of guilt. But of course, it will lay there under the surface. All we can do is try to muster enough holiday spirit to drown that wave of disappointment when we're handed something we can't eat (or touch, or even open) for safety's sake and remind ourselves that we didn't ask someone to go out of their way for us. Try not to feel guilty, because we are human (even if we don't enjoy Aunt Mary's secret recipe stollen or neighbor Ginger's famous sugar cookies) And so are they.
We drive down the street amidst sparkling multicolored lights, inflatable santa's wave cheerfully in the wind, and in the stores lines wind around bright displays of tempting last minute "perfect gift" merchandise.
I love this time of year. I love the lights, the sounds of carols, and the scent of holiday baking. I love the chill in the air (as long as I don't have to be out for too long) and like most people I start longing for the taste of my favorite treats. Unlike most people, I will be making any (and every) thing myself.
Like many people out there, I have food allergies. Of course, if you're reading this blog you already knew that. For some reason holidays can be the hardest. This year, I'm simply grateful for the opportunity to eat a small variety of treats. I'm working on expanding my diet (carefully testing a few new foods. Hoping I can tolerate tomato now, or maybe some nice pinto beans. Not exactly holiday themed, but they do add to the menu.)
I'm also reading up on posts from various forums, and thinking back on years past. Sprinkled throughout the anticipatory ramblings of some members is always a thin, but constant note of dissent. Some people dread the holidays.
And it isn't because they don't like carols, or the festive mood. They don't seem to dread the lines, or wrapping gifts or even shopping. The most voiced complaints? Generic gifts.
It's not that these people are ungrateful. The comments are almost always made in the midst of a post about "what should I get for this person I don't know very well, but really want to remember for the holidays this year." They're softened with the sentiment that "it IS the thought that counts..." but, well, there is that BUT.
Perfume, bath lotions, fancy body lotions and food are some of the nation's favorite "I really don't know you...but you're human, so enjoy" gifts. Popular for teenage nieces and nephews, for long lost cousins and that coworker you've never really seen but know is lurking behind an office door, these items are loved by many. (At least, one presumes that they are enjoyed by someone, since they sell so well.) But they are also very personal items. And there are many giftees who become emotional on the subject.
It's not that they think the giver is inconsiderate. Or even that they take the gift to mean "Here, have a batch of hives and a trip to the ER for Christmas!" They know that it's the gift that counts. They appreciate the thought, time and cash that this tacit remembrance cost. The real root of their complaint seems to be the underlying guilt associated with not being able to appreciate it. Or even to explore a new, potentially exciting product. And, deep down, the strong desire to enjoy it, as the giver most likely hopes they will.
People know that its not the gift that counts, but sometimes the thought means much more than a package. Some people would truly appreciate a card much more than a plate of homemade brownies (especially if the receiver is allergic to nuts and the brownies are studded with pecans.) And frankly, some givers seem intent on simply providing shiny paper and lots of bows. The receiver is little more than a name on their list. In some cases, its fine. But when you know someone won't be able to eat the popcorn in the popcorn tin its just a waste of money and energy to wrap it up for them. Saying it's the thought that counts won't change that. In fact, when one intentionally hands another person something that they already know won't be enjoyed by the receiver, the thought comes through loud and clear, and not the way one hopefully intended.
This year, I hope we all avoid the gift of guilt. But of course, it will lay there under the surface. All we can do is try to muster enough holiday spirit to drown that wave of disappointment when we're handed something we can't eat (or touch, or even open) for safety's sake and remind ourselves that we didn't ask someone to go out of their way for us. Try not to feel guilty, because we are human (even if we don't enjoy Aunt Mary's secret recipe stollen or neighbor Ginger's famous sugar cookies) And so are they.
Saturday, August 18, 2007
The good in people
Today, I felt like I stepped back in time. Or into the kind of past you see on TV. I've never met so many good tempered people gathered together at one time before.
Let me start at the beginning. My local health food store is moving. In preparation for the big event, they stopped restocking the shelves and promised loyal customers that the last day everything would receive markdowns. Today's the last day.
I knew it would be hot, and crowded. My heart plummeted when I saw people walking over from two parking lots down. But...25% off is just too good to miss, when your grocery bill has been creeping upwards. So we waited our turn, the kids grumbling quietly in the backseat.
Our first miracle was finding a parking space right in front of the store. The carts were entirely gone. There were none even floating in the parking lot. A line was forming near the exit for those willing to follow a fellow shopper to their car and take the cart from there.
Not a good sign. Something felt wrong so far, but I hadn't put my finger on it yet.
We wove our way into the produce section. I blinked a few times before understanding that the wall of people in front of me were actually in line. It was winding its way all the way through the bulk foods and around cases of apples and displays of strawberries.
My youngest started to cry. I quickly assured her that we didn't really need any produce, and zipped through the line to the less crowded, but still very busy area behind. I found a lot of empty shelves. Interesting items were out, but not many suited our allergies. We wound our way about, occasionally stopping to grab the last one or two boxes of anything I buy on a relatively regular basis.
Something still didn't feel right. It was like walking through a dream world. People were there, people were everywhere, but it wasn't a painful crowded experience.
I've gone shopping the day before Thanksgiving, and on Christmas eve, I've been in stores the Friday before cooking holidays and visited plenty of clearance sales. They're never quite this crowded. But, those crowds are much more miserable to navigate.
We were bumped once. The offender turned to quickly apologize, not just to me but to my daughter. People were...smiling. People apologized for being in the way of display cases, tall customers were handing out of reach items down to shorter customers. I saw one woman pass a container to another family after they said "Oh, she got the last one." A man in line offered some of his soup cans to a woman who mentioned she was on the same diet because she didn't realize there were suitable soups. Now, none of these actions are terribly extraordinary. The extraordinary thing is that every where we turned, we saw someone going out of their way to help someone else.
I don't know what it was about today. But, I am impressed. Shocked, in fact. We stood in line for half an hour, and it hit me. Despite the crowds, lack of organization on the shelves, and limited selections; no one, not one person was angry or frustrated. There were plenty of laughter and smiles. In the world of Hogwarts, you'd think the entire store had been under a "Cheering Charm".
It was the craziest I've ever seen a shop (unless you count Toys R Us the Sunday before Christmas) and it was the most pleasant shopping trip I think I've ever taken. I mentioned this to the cashier and she said she'd been noticing the same thing. She'd never seen anything like it.
My faith in humanity has been restored.
Let me start at the beginning. My local health food store is moving. In preparation for the big event, they stopped restocking the shelves and promised loyal customers that the last day everything would receive markdowns. Today's the last day.
I knew it would be hot, and crowded. My heart plummeted when I saw people walking over from two parking lots down. But...25% off is just too good to miss, when your grocery bill has been creeping upwards. So we waited our turn, the kids grumbling quietly in the backseat.
Our first miracle was finding a parking space right in front of the store. The carts were entirely gone. There were none even floating in the parking lot. A line was forming near the exit for those willing to follow a fellow shopper to their car and take the cart from there.
Not a good sign. Something felt wrong so far, but I hadn't put my finger on it yet.
We wove our way into the produce section. I blinked a few times before understanding that the wall of people in front of me were actually in line. It was winding its way all the way through the bulk foods and around cases of apples and displays of strawberries.
My youngest started to cry. I quickly assured her that we didn't really need any produce, and zipped through the line to the less crowded, but still very busy area behind. I found a lot of empty shelves. Interesting items were out, but not many suited our allergies. We wound our way about, occasionally stopping to grab the last one or two boxes of anything I buy on a relatively regular basis.
Something still didn't feel right. It was like walking through a dream world. People were there, people were everywhere, but it wasn't a painful crowded experience.
I've gone shopping the day before Thanksgiving, and on Christmas eve, I've been in stores the Friday before cooking holidays and visited plenty of clearance sales. They're never quite this crowded. But, those crowds are much more miserable to navigate.
We were bumped once. The offender turned to quickly apologize, not just to me but to my daughter. People were...smiling. People apologized for being in the way of display cases, tall customers were handing out of reach items down to shorter customers. I saw one woman pass a container to another family after they said "Oh, she got the last one." A man in line offered some of his soup cans to a woman who mentioned she was on the same diet because she didn't realize there were suitable soups. Now, none of these actions are terribly extraordinary. The extraordinary thing is that every where we turned, we saw someone going out of their way to help someone else.
I don't know what it was about today. But, I am impressed. Shocked, in fact. We stood in line for half an hour, and it hit me. Despite the crowds, lack of organization on the shelves, and limited selections; no one, not one person was angry or frustrated. There were plenty of laughter and smiles. In the world of Hogwarts, you'd think the entire store had been under a "Cheering Charm".
It was the craziest I've ever seen a shop (unless you count Toys R Us the Sunday before Christmas) and it was the most pleasant shopping trip I think I've ever taken. I mentioned this to the cashier and she said she'd been noticing the same thing. She'd never seen anything like it.
My faith in humanity has been restored.
Thursday, August 09, 2007
Allergic to my daughter?
Well, here's a post I never thought I'd need to make.
Last night, as many nights, I awoke to the sound of muffled footsteps stumbling into my room. The tiny voice whispering, "I had a bad dream," floated through my half conscious mind and as usual, I scootched myself over and folded back the covers. It may not be Dr Spock approved, but it sure helps everyone get enough sleep.
I wrapped my arm around her, and took a deep breath of freshly washed hair. Promptly, I felt my nose stuff up and throat itch. "Ugh," I thought to myself, "Thats some strong shampoo." But, I figured once I fell asleep again it really wouldn't bother me too much.
Then my ears starting feeling tight, painfully tight as if they needed to pop. Where my nose and cheek brushed the top of her already sleeping head, I began to itch.
I groaned and rolled over. My back started to itch. Slowly it spread, until I realized that it wasn't going to go away. I sat up and looked down on her serene face.
Then crawled out of bed and grabbed some Claritin-D12 (Its corn free) and navigated the tubes and wires of my husband's C-pap machine to sleep on the other side of him. Awoke with a mild rash on my face and neck, which faded as the day passed (with the help of Claritin-D12, an antihistamine. The only over the counter antihistamine I can find without any of my allergens in it.)
There are little things that you don't think of when dealing with allergies. Snuggling your baby in the middle of the night is definitely one of those little things that you don't want to miss out on. You also don't want to suffer for it later. I know that we have to take superhuman measures when we bake together. My littlest has had to wash her hands 7 times in the middle of one batch of muffins. There is no tasting and returning the spoon to the bowl, not because we might share germs but because we might share gluten. Or corn. Or dairy.
These steps we can all understand. But snuggling? I know that most people starting the journey, or the lucky ones who've never thought of traveling it will think cautions about snuggling someone with the wrong shampoo would think the one doing the cautioning was a bit paranoid. After all, you have to draw the line somewhere.
Where do you draw it? How far do you go to protect yourself? And how do you decide what is reasonable?
I won't be giving up snuggles. But I'll keep that Claritin on hand. Thank heavens there are still a few safe treatments out there.
Last night, as many nights, I awoke to the sound of muffled footsteps stumbling into my room. The tiny voice whispering, "I had a bad dream," floated through my half conscious mind and as usual, I scootched myself over and folded back the covers. It may not be Dr Spock approved, but it sure helps everyone get enough sleep.
I wrapped my arm around her, and took a deep breath of freshly washed hair. Promptly, I felt my nose stuff up and throat itch. "Ugh," I thought to myself, "Thats some strong shampoo." But, I figured once I fell asleep again it really wouldn't bother me too much.
Then my ears starting feeling tight, painfully tight as if they needed to pop. Where my nose and cheek brushed the top of her already sleeping head, I began to itch.
I groaned and rolled over. My back started to itch. Slowly it spread, until I realized that it wasn't going to go away. I sat up and looked down on her serene face.
Then crawled out of bed and grabbed some Claritin-D12 (Its corn free) and navigated the tubes and wires of my husband's C-pap machine to sleep on the other side of him. Awoke with a mild rash on my face and neck, which faded as the day passed (with the help of Claritin-D12, an antihistamine. The only over the counter antihistamine I can find without any of my allergens in it.)
There are little things that you don't think of when dealing with allergies. Snuggling your baby in the middle of the night is definitely one of those little things that you don't want to miss out on. You also don't want to suffer for it later. I know that we have to take superhuman measures when we bake together. My littlest has had to wash her hands 7 times in the middle of one batch of muffins. There is no tasting and returning the spoon to the bowl, not because we might share germs but because we might share gluten. Or corn. Or dairy.
These steps we can all understand. But snuggling? I know that most people starting the journey, or the lucky ones who've never thought of traveling it will think cautions about snuggling someone with the wrong shampoo would think the one doing the cautioning was a bit paranoid. After all, you have to draw the line somewhere.
Where do you draw it? How far do you go to protect yourself? And how do you decide what is reasonable?
I won't be giving up snuggles. But I'll keep that Claritin on hand. Thank heavens there are still a few safe treatments out there.
Wednesday, June 06, 2007
Life in Perspective
A few years ago, I was on a parenting forum with other parents of other children around my kids ages. There was nothing particularly special or unique about us. We just formed a web community, filled with unique individuals with similar parenting styles and a connection that you just can't explain.
We cared about one another, kept some track of our kids progress, laughed at the silly stuff and rejoiced at each others milestones. We're still a relatively close community, though as the kids age there's less and less to unite us online.
But there is one moment that changed us all, forever. One member, whose daughter was just a few months older than mine, awoke to tragedy. Her toddler had crawled out of bed in the middle of the night and attempted to climb the dresser. It fell, crushing her.
There was no second chance, and worse...nothing that anyone had done "wrong". She was asleep in her room, with the door closed to prevent accidents if she happened to wake and wander. It was a setting like thousands of other households in the United States. She wasn't neglected, she wasn't abused, and no one had "accidentally" left something dangerous within reach. It just never occurred to anyone that a dresser might tip over.
In Earthquake county, we bolt our bookcases to the walls and protect our knick knacks. Nut never had I imagined a full sized dresser might tip. I've tried to move one, it's not easy.
But what happened to this child isn't unique. And this weekend, tragedy struck again, when a young boy climbing a dresser tipped it over. He was fine. But, it fell on top of his 6 month old brother, who didn't survive.
According to the CPSC, at least 8,000 children are injured in furniture tips and falls every year. In the grand scheme of things, it is unlikely for a child to be fatally injured by a falling dresser. But when it's your child, statistics don't matter.
There is something we can do to prevent further tragedy. In households with young children, all furniture should be securely fastened to a wall. It doesn't matter how closely you watch, or how careful you are. Accidents happen. We can be "overly cautious" with a few extra nails. And we can pass the word on to other parents, so they can anticipate the unfathomable and prevent another nightmare.
We cared about one another, kept some track of our kids progress, laughed at the silly stuff and rejoiced at each others milestones. We're still a relatively close community, though as the kids age there's less and less to unite us online.
But there is one moment that changed us all, forever. One member, whose daughter was just a few months older than mine, awoke to tragedy. Her toddler had crawled out of bed in the middle of the night and attempted to climb the dresser. It fell, crushing her.
There was no second chance, and worse...nothing that anyone had done "wrong". She was asleep in her room, with the door closed to prevent accidents if she happened to wake and wander. It was a setting like thousands of other households in the United States. She wasn't neglected, she wasn't abused, and no one had "accidentally" left something dangerous within reach. It just never occurred to anyone that a dresser might tip over.
In Earthquake county, we bolt our bookcases to the walls and protect our knick knacks. Nut never had I imagined a full sized dresser might tip. I've tried to move one, it's not easy.
But what happened to this child isn't unique. And this weekend, tragedy struck again, when a young boy climbing a dresser tipped it over. He was fine. But, it fell on top of his 6 month old brother, who didn't survive.
According to the CPSC, at least 8,000 children are injured in furniture tips and falls every year. In the grand scheme of things, it is unlikely for a child to be fatally injured by a falling dresser. But when it's your child, statistics don't matter.
There is something we can do to prevent further tragedy. In households with young children, all furniture should be securely fastened to a wall. It doesn't matter how closely you watch, or how careful you are. Accidents happen. We can be "overly cautious" with a few extra nails. And we can pass the word on to other parents, so they can anticipate the unfathomable and prevent another nightmare.
Monday, June 04, 2007
Girl Scout Fun
This week end my daughter went on her very first Girl Scout overnight.
Like any Brownie, she was nervous. But unlike most Brownie scouts, she also had to be concerned about what she could eat. She has to avoid dairy and blue dye in order to avoid a nasty migraine.
I must admit, I was concerned as well. I feel so caught up in the whole food allergy jungle, that I'm never quite sure what "normal" is anymore or where we all fit in. And there are many nights when I look at the clock, know the kids are hungry and just can't fathom what to fix. (My youngest is allergic to nuts. I need to avoid gluten, corn, potato, squash, beef, most legumes, cruciferous veggies and olive oil. Maybe more, it gets overwhelming.) There's not a lot left, especially when you want it to taste good enough for a picky 5 year old palate.
How was this trip going to happen without her feeling that much different?
Thankfully my worries really were for nothing. There is another girl in her troop avoiding dairy (and gluten). The leaders really did provide the food; for everyone. In fact, my daughter came home with not only her own emergency snacks (I hid some granola bars in there, hoping that if worst came to worst, she could at least have her own calories on hand.) but a bag full of leftovers. There were Newmans dairy free cookies, dried fruit and koala crisp cereal. All items that are uniquely special treats in our household...she fared quite well!
Most precious to us, however, is the fact that the troop cared enough to make the trip safe for her. The one thing she did not bring home was an upset stomach, which she assures me time after time is much worse than any peer pressure or feeling of being singled out her 9 year old mind can imagine. Thank you Girl Scouts!
Like any Brownie, she was nervous. But unlike most Brownie scouts, she also had to be concerned about what she could eat. She has to avoid dairy and blue dye in order to avoid a nasty migraine.
I must admit, I was concerned as well. I feel so caught up in the whole food allergy jungle, that I'm never quite sure what "normal" is anymore or where we all fit in. And there are many nights when I look at the clock, know the kids are hungry and just can't fathom what to fix. (My youngest is allergic to nuts. I need to avoid gluten, corn, potato, squash, beef, most legumes, cruciferous veggies and olive oil. Maybe more, it gets overwhelming.) There's not a lot left, especially when you want it to taste good enough for a picky 5 year old palate.
How was this trip going to happen without her feeling that much different?
Thankfully my worries really were for nothing. There is another girl in her troop avoiding dairy (and gluten). The leaders really did provide the food; for everyone. In fact, my daughter came home with not only her own emergency snacks (I hid some granola bars in there, hoping that if worst came to worst, she could at least have her own calories on hand.) but a bag full of leftovers. There were Newmans dairy free cookies, dried fruit and koala crisp cereal. All items that are uniquely special treats in our household...she fared quite well!
Most precious to us, however, is the fact that the troop cared enough to make the trip safe for her. The one thing she did not bring home was an upset stomach, which she assures me time after time is much worse than any peer pressure or feeling of being singled out her 9 year old mind can imagine. Thank you Girl Scouts!
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parenting with food allergies,
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