I've come to accept that sometimes, people who are aware of my allergies still forget.  And that's okay.  But recently, it came up.  An out of the blue, "Really?  Are you serious?" from someone who knows, or should know, that I have to be careful to the point of being extreme.  I can't eat that.  I can't eat this.  I can't be in the same house as popping corn.  It wasn't a big deal.
In fact, it wasn't a big deal to the point of them making it into a big deal.  (Really, I was already on to another subject.)  But then they finally came to terms with it by shrugging and saying I was always an au natural kind of girl.
Granola mom.  Grapenuts.  Tree hugger.
It gave me a jolt.  I mean, I always recycled.  But I grew up in California and it was sort of beaten over our heads in elementary school, by the tree hugger parents and new environmental curriculum teachers.  Reduce, reuse recycle.  Trim those 6 pack soda plastic holders.
I never was crazy about neon-colored food; it still amazes me that some people are.  The rest I do because of allergies.  Don't I?  
I mean, I shave my legs.  I used to wear a little bit of makeup.  Paint my nails.
I've given some of that up.  Partly from the allergies (Do you know how expensive it is to find makeup free of my specific allergens?  I still need to track down sunscreen.)  Partly from life...it takes too much energy to worry about it.  Partly it's just me.  I don't feel a *need* to sit in front of the mirror and enhance my face.

Huh.  Maybe I am a crunchy, grapenuts, tree-hugging granola mom.
Having unique food allergies has made me much more aware of the world around me, the political side of our food supply and my personal carbon footprint.  I'm not to the extreme that some people are in, and I think it might be because I'm not inherently crunchy.
Then again, maybe I am.  I inherently want to reduce our carbon footprint and protect our food supply.  I want natural, organic, pesticide free food.  I want farm fresh, local produce.  I want my kids to see the woods, and animals roaming free, and know where food comes from.  (Not the grocery store.)
On the other hand, I like little rubber duckies, and cute paper plates for birthday parties, and a variety of not-so Earth friendly possessions.

Which came first?  Crunchy or not?
I suppose it's all about awareness.  Without awareness, I wouldn't know how to make informed decisions or how to protect the Earth.  I wouldn't make 'better' choices because I wouldn't know the impact of my "worse" choices.

Without the allergies, I wouldn't have awareness.  And while I wish I didn't know a lot of what I do know, in the end I'm better for it.  Regardless of when the change occurred, I am the Granola Mom.  (Although, I'm allergic to granola, too.)  :P

Stress

When I began this blog, I was frustrated by the phrase "Maybe it's just stress..."  The doctors seemed to use it randomly, as a fall back, meaningless phrase to excuse the fact that they didn't know the answer.  It was a way to withdraw pressure from them and place blame back on the patient.  Not only do you feel awful, it's your own fault you feel awful.  You're too stressed and should have spent your copay on a good yoga class instead of this doctor visit.
For awhile, I believed them and strove for a more stress free life.  (I felt awful.  I alternated between worried I was dying and hoping for it.  Not because I wanted to die, mind you, simply because the pain and discomfort was really and truly THAT bad.  And all the doctors could do for me was say "Maybe it's just stress...")  What kept me looking for an answer was the fact that, although life was stressful, I always felt like I was handling it.  The most stressful moments came from my physical symptoms and the way they interfered with my real life.
And I found answers.  I discovered that corn derivatives are evil for my body.  I discovered that my immune system was attacking anything that remotely resembled a corn protein (or sugar) and was so smart that it didn't care what a label said.  If there was corn in there, my stomach found it and attacked me for it.  I discovered that gluten made my body fight back, too, though maybe not quite so hard.  I developed, fought and recovered from H Pylori.  I gained weight (in a good way).
Today, I'm actually functional.

I'm also under tremendous stress.  Everywhere I turn with my daughter there are dollar signs.  Or doctors saying that she needs things that cost more money (I'm sorry, but material items that will be disposed of in the short term are NOT needs.  Classes that I don't even expect her to attend and have to drag her to kicking and screaming are NOT needs.  Soda, candy, and single serving packages of junk food are NOT needs.  Nutritional drinks masked as milkshakes might justifiably make the list if they didn't end up smashed against the wall because I've already gone and laid the groundwork of good nutrition over the first 8 or 9 years of her life.)  The depression hit us hard.  (I think the history books will consider the last 5 years a depression, even if there wasn't a specific defining day of beginning)  I have a child with Anxiety (and depression, who acts out because we took too long to find her the labels and help she needed) and one with specific health conditions that need time, patience and treatment.  I have a household to run, temper tantrums to clean up after, interesting neighbors in the neighborhood, food to prepare and spend so much time holding things together for others that I can't wedge in a few hours for a regular job, even if I were to find one that would take me, faults and all.

To call that stress sometimes seems like an understatement.

But I'm not losing weight.  I'm not vomiting, or doubled over in pain.  I get occasional tension headaches that I'm not thrilled with...but with my specially compounded pure over the counter strength acetaminophen, I can handle those.

And still, there are a few people (mostly doctors) who when asking about my history want to blow off the corn allergy as 'probably stress related symptoms'.  I don't want to be bitter, or jaded, but it's my body.  What I do or don't put in it should be my choice.  I shouldn't need a doctors okay.  But to take medication that doesn't attack me I need them to stay on my side.  To get a note stating that I'm not being unreasonable when I bring my own food to an amusement park, or an airplane, or wherever they'd rather you buy food there, I need them on my side.  To reduce my stress level...so that I can trust them to BE on my side if I ever do get to a point when I need some help that doesn't come from inner strength or a homegrown garden...I need them on my side.
The dismissive hand in the air when I remind them of the corn/dextrose allergy is NOT reassuring.

Trying not to be a broken record

As 2013 winds to a close, I'm sitting here staring at a blank screen.  A blog, full of triumphs and tribulations, and mostly frustrations.  As I look back at the year, I'm not seeing anything particularly new or exciting to share.  We survived.  The economy is still impacting us, both actively and residually.  Diets are nothing radically different, and bumblebee is still in the throws of putting one foot in front of the other.  (Sometimes fighting the act quite valiantly.)

And I'm still depressed that I can not find safe chocolate chips in my price range.  Perhaps ever again!

On the other hand, we have an amazing garden growing at my wonderful green-thumbed mom's house.  Carrots, beets, arugula and kale...does it get any better than that?  (Oh, yes it does!)

While we are still ironing out a few kinks (our cantaloupe froze) the kids dined on roasted pumpkin tonight.  We've enjoyed zucchini soup.  Kale chips.  Beet green pilaf.  And lots and lots of tomatoes over the past year.  We're eagerly planning and looking forward to next year's crops!  (And maybe some better preservation so the bounty lasts!)

The dog is kicking me into shape.  Maybe I should say he's barking me into shape.  We take nice long walks together, and he won't let me laze out of them.  It's his job.  His passion in life.  His true purpose.  Get me moving.  Walking.  Running.  Whatever.  He just likes to go.  And he hates to go without me, because, you see...It's not him that needs the walk.  It's me, really.

My daughters...the eldest makes me proud and bittersweet happy as she grows into a lovely young woman with her own thoughts and ideas and plans that I can no longer help sway one way or the other.  She will be a force to reckon with in the world, once she's ready to be unleashed upon it.  Meanwhile, she soaks up learning like a sponge, she sharpens her skills and looks up in disbelief as the world stares at her talents in awe.
The younger makes a practice of breaking my heart.  She, too, will do great things...move mountains and raise armies and make a real difference in the world, if we can just get all of her energy focused forward and away from the anxieties that overtake her.

Someday perhaps we'll find all the answers we need for every last one of us, but in the meantime, maybe our goal isn't just to find those answers but to live without them.

Happy 2014 everyone.  May this be the year that we all find the answers we need, or the patience we need as we wait for them.

Eating Wrong

The trouble with following a specific dietary plan is that someone, everyone, has advice.  Usually, they want to make sure you know...you're doing it wrong.

We're gluten free.  At least, 2 of us are 100% gluten free.  The other 2 are somewhere between partially and mostly gluten free.

Now, I must explain to you that there are multiple ways of following a gluten free diet.  My way involves replacing traditional wheat based foods with whole grains and vegetables.  Spaghetti squash, for example, might take the place of flour-based noodles.

I'll admit that it's easy to slip into a habit of using rice everywhere.  Mostly because there are still a few digestive issues going on, and rice is cheap...and easy.  But I use brown rice, or a blend of white and brown rice products to increase the fiber content.  And both fruits and veggies are staples in our diet alongside beans and nut butter.

Our diet is relatively balanced.  Except for my daughter who has anxiety issues surrounding food.  Major, massive, heart pounding, scene stopping, "are you going to let her get away with that?" kind of anxiety issues surrounding food.  In fact, she's managed to starve herself for days on end to avoid eating something that looks the least bit...not right.  She needs help.  And we're trying, so, so hard to get it.  Oddly, our relatively healthy diet keeps getting in the way.

I want to share a recent conversation.  I called, again, to talk, again, to an advice nurse about her tummy aches...again.  Her doctor had prescribed a new dietary regimen, and her tummy aches changed in severity so I wanted to document it.

I got a spiel about fiber.  Fine.  I agree.  Fiber is important.  Then the nurse started in on an explanation about whole wheat and a list of specific brand names to look for.  By this time, my daughter was whimpering again and I was frustrated (this isn't the first time I've ever called for a tummy ache issue.  It isn't the first spiel on fiber, vegetables, the evils of soda, the woes of the Standard American Diet yadayadayada, and frankly...they're preaching to the choir.) so I cut her off and said "We're actually gluten free, but I'll keep an eye on her fiber intake.  We usually are good about it, but with the recent changes and her picky eating I don't know exactly how much she's had lately."

The response was interesting.  And infuriating.

"Why are you gluten free?"
"Some of us have Celiac and it's just easier to keep the house gluten free."
"Well, there's the problem!  Ma'am, I'm not your doctor, but really, your daughter needs more wheat.  There are very few people who really have Celiac Disease, and they suffer a lot, but most people are misdiagnosed.  You know, the rest of your family might really benefit from adding wheat back to your diet.  I just can't stress enough how important whole wheat is for good health."

At first, I was speechless.  And then, as words began to form in my head...I had to bite my tongue.  Take a deep breath.  Count to ten.

There is nothing inherently necessary in anyone's diet.  No one item is inherently vital to our health, except perhaps water.  Wheat...wheat is a grain which happens to be dominant in our current food supply.  It might be a source of fiber.  But so are oats.  Quinoa.  Raisins.  Brown rice.  Buckwheat.  And a thousand fruits and vegetables that may or may not end up on our plates at any given meal.

Wheat is not a necessary component of a healthy diet.  In fact, some dieticians (the ones who do their research and keep up to date on actual studies and current understandings) might say that a truly healthy diet is a balance of a variety of foods including starch, proteins, plants and fats.  Calcium rich foods should be included.  No item should be used to the exclusion of other items.

Wheat?  It's just convenient.  Too convenient in most standard diets.

When I got to 10...and back down to 0...I interrupted her litany on the virtues of this single grain to ask exactly how much dietary fiber an 11 year old girl should be ingesting each day.  She sputtered to a stop.  "There isn't an exact number we just know that she isn't getting enough..."   and then "...Well, ma'am, more whole wheat would really help her feel better..."
What minerals and nutrients, exactly, is she lacking that including wheat in her diet would improve?
"Well, I don't know, exactly, that's not the point.  The point is that she really needs more wheat..."

She admitted she wasn't our doctor and didn't have the authority to diagnose us as being misdiagnosed...and then I cut her off as she began to defend her advice with speculations regarding the overdiagnosis of a condition that most estimates claim is grossly under diagnosed.
In the end, I made an office appointment and spoke to an actual medical professional.  Who did not try to talk me out of a gluten free diet, but couldn't give me much advice either.

The problem, you see, is that we're eating wrong.  I don't buy fast food or soda.  The kids lack essential snack cakes, sprinkles and candy.  Idiotically, I serve up glasses of water and encourage them to drink from a handy waterbottle instead of purchasing soda on our outings.
Clearly, if I were to feed them like their peers...at least we could sheepishly admit that we have things to work on.  We'd have something to blame.  The good old usual suspects.
When you don't have the usual suspects, and you're already gluten free, I think the medical community must feel a little lost.  But don't quote me...I'm the one eating wrong.
And thriving.
(I just wish I could find the right wrong diet for my daughter.)

Thanksgiving, a little late

I've been having trouble feeling grateful lately.  My daughter is still struggling.  She has Anxiety Disorder, and it's not very well controlled at the moment. And to make matters worse, it sounds like something went wrong in her school records.  So not only are we dealing with the repercussions of misunderstandings leading to contradictory therapy, there's no record of any of her issues to begin with.
Yikes.
But, this is a season of Thanksgiving.  Not just Thanksgiving, but of miracles too.  (It is, after all, Hanukkah)
So, I'm trying to think of all the things I have to be thankful for.  And I've hit on one in particular.
It's hard to deal with anxiety as a kid.  It's hard to have panic attacks where you can't breathe and your tummy hurts.  And then, you can't help but snap at your friends.
When kids are in middle school, it's hard just to be different.  Different kids get picked on.  It's not okay to cry.  It's not cool to be seen with your mom.  In other words, anxiety disorders and middle school kids really don't mix.  They're like water and oil.
But some kids in middle school struggle.  Some struggle openly.
Today, I'm grateful for the parents who take the time to try to help their kids understand how hard it is to be different.  The ones who help their kids continue to be a friend to mine, even when she's not able to reciprocate very well.
I'm thankful for the continued birthday invitations, and playdate offers.  The understanding waves.  The heartfelt notes that invite my child over, and preface understanding that she may back out at the last minute.
I'm grateful for the look of concern, followed by confident voices because adults we know have learned the best way to react for her sake.

I suppose, in short, I'm grateful for true friends.

I think I'm in a fanciful mood today.  There are so many news stories, sad stories about girls who are lost.  In one way or another, they can't (or couldn't) find their way.  So many different reporters speculating on what went wrong and the sad state of society...or just looking for sensationalism.

I have a teenager and a tween daughter.

Although I've tried to prepare them for life, to be strong and stand tall...these news stories worry me.
So today I'm sending a fanciful, wordy, description-filled (mostly bad metaphores) to a hub that's meant to be female empowering.

http://hub.me/afzMk

If only every girl in the world knew...without a doubt that she were worthy and strong and beautiful; regardless of the bullies who might tell her otherwise.

They say that life never hands you more than you can handle.  But some days, it feels like someone's miscalculating.  Between the hit from the economy and the healthcare crunch, the dietary demands and the increased cost of gas...And the special issues that come with raising a quirky kid; especially after years of detrimental 'therapy'; it's really hard sometimes.

That's when my faith is strongest.  Because frankly, I can't do it alone.

But this wasn't going to be a religious post.  What I wanted to say, was that after all those years of doctors' stroking their chins and shrugging their shoulders and suggesting that 'Maybe it's just stress...' I'm sitting here under more stress than I feel like I can handle alone.

And guess what?  I don't feel like I'm dying.  My stomach isn't objecting to the calories I provide it with (whether or not those calories are nourishing.)  I'm not huddled up with a heating pad.  I'm still functioning.  I've been living a life as a security blanket, making ever increasing to do lists in my brain, and I'm still walking.  I'm sitting in meetings.  I'm interacting with other people, and the only possible reason that I feel like I'm exploding are the need to be two places at once and the strong, desperate desire to be at home catching up on the things that desperately need catching up on.  Things that can't be done in the 15 minutes here and there that I get to myself these days.

Even feeling torn in two, struggling to make ends meet while we struggle to find the right solution for those of us still struggling...I feel healthy.  And I wouldn't trade THAT for a box of pizza or an empty sink.

Life with a Corn Allergy: 8 years in.

It's actually been closer to 10 years since I was first diagnosed with a suspected corn allergy.  But I'd say it's been about 8 years since I really learned to live without corn or gluten.  And by live, I really mean LIVE.

At first, it was a huge transition.  HUGE!  I had to learn to cook from scratch.  I had to learn what cooking from scratch meant.

In the past decade, a lot has changed.  But what strikes me most is what has stayed the same.  As a community, those of us with corn allergies are still fighting for knowledge.  The food industry is becoming more polished in their responses, but the responses are still pretty much the same.  Customer service representatives scroll through pre-approved answers and try to use the most relevant ones, when asking about corn derived ingredients I learn about GMO policies, the top 8 allergens (which still do not include corn), the reasons people might avoid certain ingredients (I guess they get a lot of people wondering IF gluten is dangerous, regardless of whether it is in their product), and a variety of explanations about why certain ingredients (like ascorbic acid, a source of vitamin C and an antioxidant) are used.
I still struggle to get a clear picture about whether or not a new product is safe for me, personally, to risk consuming.  And once I do get answers, I still feel like I'm playing russian roulette every time I try something new.  I don't try new things very often.  I don't like gambling with my health.

I have learned how to cook brussel sprouts.  And kale.  I make cookies, cake and pizza dough and the only mix I use is Chebe's.  (Which may be going by the wayside.  My last communication with them was much less satisfying than in the past, and I've heard rumors that the boxed mixes found on store shelves may no longer be entirely corn free.  I'm holding my breath, but trying to get ready for the inevitable.)  I've even made bagels!  (A lot of work, but delicious)

I'm still dealing with professionals who are concerned about my food attitude.  Which is 'if it bites back, don't eat it.'  And whether my unhealthy avoidance of fast food is the root of my daughter's anxiety issues.  On this, I'm wearing very thin.  Most days I argue back that if I'm at fault, it's more likely the years of seeing me sick that's the problem...not the healthy me that simply doesn't eat store bought pizza.  But some days, I want to listen and give up and give in.

I still stumble into conversations about food allergies that hurt.  Ones where my needs are suddenly dismissed because they are simply too daunting for a potluck manager to overcome, or the person I'm talking with doesn't realize that I, myself, suffer from food allergies and makes cutting remarks about snowflakes and crazies or glass bubbles.  But those I manage much better than I used to.  I also stumble into conversations less frequently than I did in the beginning, when the overwhelming task of re-inventing my daily diet and family lifestyle was truly all consuming.

What concerns me most is what's gone downhill.  While I was diagnosed by a medical professional, and originally under the care of a knowledgeable doctor, my health insurance changed and I've subsequently had to change doctors to find ones that would accept my insurance.  I can not seem to find one within my current insurance who is knowledgeable, or even open minded about my allergies.  It's also harder and harder to get medication compounded, even though over the counter varieties consistently seem to make me sicker.

While the corn free commuity that is (and has always been) my life line continues to grow stronger, both in numbers and knowledge, I find an increasing discord among sufferers.  There are those who want corn treated like the other top 8, those who are new to diagnosis, and those who are frustrated from years of half answers and suffering.  There are those who want solutions, and those who want vengeance.  I still maintain that the only solution is to lobby for full disclosure of source ingredients, labeling of GMOs (Which may or may not contribute to the rise in food allergies and other health issues, but are definitely a variable that consumers have the right to control in their diet), and more research.  The cause and mechanics of corn allergy or intolerance or sensitivity remain a mystery, and to my knowledge very little has been done to remedy that.

Corn allergy doesn't consume my life anymore.  But it's still there.  And as it slips farther into the background I find myself caught in many worlds.  I might forget that I have special needs until things come up...emergency day trips, impromptu get togethers, or any sort of health issue including a random reaction to previously safe food.  And then I begin to feel like little more than a victim to this condition.

Thankful Thursday

Today's thankful thursday...Our local animal shelter.
Last year, my daughter's depression hit a peak that was scaring us.  She deals with anxiety issues, and sensory issues, and a myriad of issues and despite therapy (maybe even partially because of the wrong therapy) we were watching her spiral downhill.
There was one thing that seemed to consistently improve her mood, her ability to cope and her overall quality of life.  Which led to an improved quality of life for the rest of us.  And that was...dogs.

Our neighborhood seems to have a ridiculously high dog turnover rate.  One family is on their 5th dog in 2 years.  While I'm happy for their fortune...and Bumblebee was enjoying spending quality time with their pooches during their still-working hours (with their blessing), it was hard on all of us when they would make decisions to rehome their beloved pets.
Reasons varied.  Pets were occasionally offered directly to Bumblebee, which made the whole seperation ten times worse.  We rent.  We're financially challenged.  A pet?  Um...no.
But then we did some research on animals and anxiety/depression.  The facts were pretty concrete from what we'd seen with her.  We thought...maybe a hamster.  Or...a bunny.
But you can't bring either of those with you to the park, or a friend's house, or whatever.  We wanted (we needed) a pet that would help to get her out of the house and social.  That would directly and positively impact the depression we were all being sucked into.
A cat?  They seemed a distinct possibility.  But, you can't take a cat out in the yard when you can't breathe.  you can't take them for a walk.  And they do their own thing a lot.  They aren't necessarily cuddle bugs when you want them to be.
Bunny then.  But research shows that they are pretty needy.  Their upkeep cost was similar to a dog's and they live for 8 or more years.
I looked at my husband and said "If we're going to have a pet for the next 8 years, I'd rather have a dog."
He looked back at me and said "Me, too."
Enter the local animal shelter.
I'll skip through the looking process for this post.  Suffice it to say, we brought home this fluffball.  He was traumatized in the shelter setting, and removed to a no-kill; all frills facility where he was given his own little room with a cozy chair and a covered window.  He shivered, and used his wide eyed 'button' face on us.  (The face that makes him look like a teddy bear with button eyes and nose).  We were smitten.
Of course, we got him home and discovered that on leash he is loud and obnoxious, and off leash he's anxious to get back on leash and do some more walking.
He's kicked me into shape with his 3 miles a day or more, and makes sure we get moving.  He's dragged us out of the house for weekly obedience classes (which was a condition of adoption, since he was shivery and needed confidence boosting)  He's not quite the therapeutic dog we hoped he would be for Bumblebee.
He's better.  He's given my husband and I something new to focus on besides what went wrong today; he's given us all something to laugh about and talk about.  He gets us moving.  And once in a while, if we're really lucky, he snuggles up close.

So, we're thankful for the shelter.  Not only for giving him a chance to find us, but for helping us to keep helping him.  And in doing so, to help ourselves.

Thankful Thursday

Looking back over my blog, I've noted that the past few years have been rough.  I haven't been thinking or focusing enough on positive things.  Nor have I been keeping up with a faithful dialogue of my life, stressful or not.
And there's a lot of mention of depression, which I flirt with and am repeatedly told that there's not much I can do except reduce my stressload.  Since there isn't a lot I can do about that either, I decided I'd begin a series of thankful thursdays to last through Thanksgiving if not beyond.  (Eventually I may start being thankful for the same things over and over.)
This lovely epiphany began as I was strapping on my favorite apron and thought "This makes me happy."  I don't often wear aprons.  No one really does anymore, I've noticed.  They sell them all over the place, and hang in kitchens and appear on TV.  But how many times do you show up unexpectedly at someone's house and see them hastily untying a stained apron?
If people wear one, it's usually for show.

My favorite apron isn't exactly showy.  It does a lovely job of absorbing that extra backsplash when I'm washing dishes, although I usually am reminded to put it on *after* a large pot resettles itself with a clatter and splatter of suds down the front of my jeans.  But, tie it on I do.  And then I feel my mood raise.

I have no idea what was done to the fabric to create this cute design, but it appears to have been done by hand.   

You see, this apron is special.  It came to me when my parents were cleaning out my Grandmothers house and I mentioned I'd like some cute kitcheny things.  Along with a dozen egg beaters (which all were abandoned soon after, when I was diagnosed with Celiac and Corn allergy and terrified of cross contamination) I found this apron.  It was cute, I thought.  The little pattern at the bottom seemed unique.

I figured I should throw it in the wash.  After all, how long had it been in storage?  And what manner of flour might be hidden in it's folds?  Gingerly, I turned it around, looking for a tag.  That's when I discovered the most wonderful thing about this apron.

It's handmade.
Family research indicates it was originally handcrafted either by my grandmother when she was young or by my great grandmother.  Either way, it seems like an heirloom I should cherish.

A good collector knows that collectibles collect nothing but dust if they aren't loved and used.  So, it was thoroughly handwashed and now it is regularly worn. That's the best way to cherish something, don't you think?

I hate punishing my kids.  I absolutely hate having to come up with and follow through with consequences.  I'd much rather they behave like the perfect angels I know are buried in there; sometimes closer to the surface than others.  But, a good parent can't always be a child's friend.
Sometimes, parenting means being 'mean'.
Although one child is constantly testing and reevaluating her boundaries, the other sometimes takes me by surprise.
It is that child that blinked away tears tonight and told me I was right and thank you.

I don't know how to let her know how proud I am of the way she listens, accepts and respects rules.  She may rant and rail in her own way in private (And I'm certain with her friends) but some days...she makes me feel like maybe I haven't done so bad by them after all.

Wearing a Mask

I have a mask that I wear when I need to go somewhere there might be popcorn.
I hate wearing it.  Even though I splurged on a really cute version from icanbreathe.com; I still find myself avoiding places that sell corn.  I love the mask, it's cute and it definitely helps minimize if not avoid a reaction.  It's worth it's weight in gold for that alone.  The only problem with it at all is that it is 'different' and part of me becomes more aware of the fact that I'm different when I wear it.  I can't even set people's minds to rest by smiling, because they can't see my smile.  They also have trouble understanding me because they can't read my lips, and it does make some people look twice.

Today, my daughter's friend needed a ride home and we were passing the farmer's market.  The good one.  The one I love to go to, but never quite seem to make it to (partly because they sell kettle corn and I have to wear a mask and shower when I get home to avoid a reaction.)  I decided to stop, and let them look around and maybe, hopefully, get a few fresh fruits at a discount as they were closing up shop.

As we pulled up, I pulled out my mask and said that I hoped I wouldn't embarrass them too much by wearing it.  "Why?" the friend asked, and I started to explain about my allergies.
"I know that," she said, "But why wouldn't you want to wear your mask?"
I just shrugged and teased about them being too cool to be seen with me anyways, and I didn't want them to die of humiliation by my wearing an uncool mask.
"Well," said the friend matter of factly, "It'd be a lot more embarrassing to have you break out in a rash, swell up like a balloon and stop breathing and then for us to call an ambulance, and then try to explain to my dad that he has to come and get me right now because Penguin's mom died.  Just because you don't want to wear your mask."  She had a point.
I've been spending a lot of time with people who don't 'get' my allergies. It was shocking, and refreshing, to have a 13 y/o girl point out so succinctly that my options were limited and I had to make the best of them.
I wanted to hug her.
But I didn't.  I figured that if the mask didn't do it, a hug just might.   So instead, I tightened the mask, and set off.

Unfortunately, we didn't find anything (Anything!) appealing.  We had to go home and make cookies.
But I'm planning to drag myself back to that farmer's market, if for nothing else then the excuse to wear my mask in public and get comfortable with that particular aspect of my allergy.

Food Frustration

I don't know if it is possible to express the frustration that comes when a child is crying because she is hungry.  For a peach, which you have.  Which is cut, as requested, and placed in front of her.
And will not be eaten because...she's hungry.  And in tears.  Begging for a peach.  Which is in front of her.  Which she says she'd like to eat but she can't.

And everyone hates her.
Why can't she have a peach?

Doctor after doctor has talked with me.  We've discussed how she shouldn't be subjected to a limited diet.  She shouldn't have to put up with bland, distasteful food.  That I need to make sacrifices in my beliefs or maybe my needs.  That my symptoms probably won't be that bad, and parents make sacrifices, and my daughter needs to eat.  That I can't punish her by making her go hungry if she chooses not to eat.  That as a parent my responsibility is to feed my daughter, to find food and calories that will satisfy her.

So what do I do when I have what she wants and serve it up to her in the 'right' dish, in the 'right' way, looking all nice and pretty and it's perfectly ripe...and she breaks down in tears because all she wants is the peach that's sitting in front of her waiting to be eaten?

And for that matter...is pizza bread (crust topped with red sauce, onions, garlic, spices, and spinach) with turkey burgers and salad really that horrible of a meal?

Camping: A Recipe for Success

This weekend I did what once would have been impossible.
Our girl scout trip planned a family campalong.  We walked a good mile uphill from the parking lot, toting our tents, sleeping bags and food gear, set up adjoining campsites and then spent the night in the woods.  Far away from refrigeration, real kitchens, and electricity.
The hike scared me a little.  The food scared me a lot.  You just can't go 24 hours without eating.  And you can't just get by on a few snacks, either.  For a full 24 hours in the woods (especially if it includes a couple miles of hiking) you need real food.
I entered into this trip acknowledging that I would be bringing my own food.  I was greatly relieved to receive the email explaining that trying to organize food for multiple families was too much for the coordinator, and that any adults joining the trip would be expected to provide for their personal families.  Yay!  I wouldn't be the only one.
Next came choosing the meals.  This was harder than one might imagine, since the food needed to both suit my dietary needs and be something my very picky eater would be willing to consume in front of friends.  Some food she ended up having her own personal treats for.  We purchased sushi for the first lunch, for instance.
Here's what we ended up with overall:
Lunch:  I made savory popovers for me.  Dd had prepurchased sushi.
Snacks:  Trailmix.  Dried fruit and chocolate.  Hers included chocolate covered honeycomb and purchased roasted pumpkin seeds.
Dinner: We settled on foil packets of prebaked chicken, sweet potatoes and brussel sprouts.  Honestly...it didn't come out that great and Bumblebee gratefully shared another family's surplus mac and cheese.  But, the sweet potatoes would have been better with salt and cooked longer over the coals.  I was just guessing at times, since everything was precooked.
Dessert: cookies and s'mores.  The s'mores were provided by the coordinator, and I politely declined.
If we go again, I'm bringing apples to roast over the fire.
Breakfast was peanut butter cookies for me and we'd packed gluten free bagels for bumblebee.  She ended up sharing surplus food from other families, again.  That's okay...gluten free food is expensive and Penguin was more than happy that I toted it all back down the hill.

I'd also made chebe bread pull aparts, which I completely forgot to pull out and enjoy until we got home.  They were delicious.  I wish I'd warmed them on the coals and enjoyed them with my meal.  But I was pretty happy to discover them in the bag and have a lunch all ready to go while we were unpacking.
The trip was amazing.  There was a lot of bonding, and while the allergy issue came up it was also easily addressed and accepted then set aside.  Everyone acknowledged that the last place you want to risk a reaction is the middle of the woods, and we moved on.  I felt a little selfish not sharing my cookies.  But since no one else could share their food with me, an there seemed to be plenty to go around, I also felt like it was okay.
I actually enjoyed sleeping on the ground.  Okay...it was really hard and my hips hurt.  But once I figured out that bug spray gives me a headache, and that I was trying to sleep on a slope (and turned my head uphill instead of down) things improved greatly and I enjoyed looking out the tent window at the trees.  And listening to the owls and the rustle of wind in the trees.
Would we do it again?  Absolutely!  Maybe with less uphill walking to get to the campsite, but we'd do it again.

A return and an explanation

I haven't written for awhile.  Most of you, if you follow me, will have noticed.  Or not noticed, until this posting appears.  In either case, you may wonder why.
When I began this blog it was about living corn free.  Not just living corn free, though.  It was meant to share the sudden freedom that came from that allergy diagnosis.
Freedom?
Yes.  You see, pre diagnosis, they told me I had anxiety issues.  They taught me to breathe through reactions, that I stressed and worried too much and I learned to ignore vital signals my body was sending out to say "HELP!  There's something wrong!"
Some of those strategies helped.  I may have thought I was dying on occasion, but mostly that was just pain. And I wasn't really afraid I was dying.  Then I'd wake up feeling a bit better, (no longer on death's doorstep) and pull myself along and through the day, all the while chastising myself for my weakness.
Other people felt sick, too.  Others struggled to recover from pregnancy, others had menstrual cramps, others had to have lingering morning sickness...right?  That's just part of growing up and having kids and not sleeping well.  That's what the doctors said, what my friends said, what others that I dared to begin to open up to told me.
And then I discovered a diagnosis.  And one day I ate, and felt stronger instead of tired and nauseous.  It was a very odd sensation, one I couldn't remember.  It lit up my future and filled me with a hope I can't describe.  I wanted to share that hope with others.

While I was rejoicing in my freedom through food restrictions, my daughter was developing clinical anxiety.  She was 2 when I was first diagnosed, she was there when I was still having reactions that were debilitating and she was there for the ups and downs.  I don't know, and I'll never know, if what she saw then influenced the progress of her Anxiety, or if that Anxiety would have manifested regardless, choosing something besides food to center on if food and my safety weren't at the center of her universe during those formative years.  
When we finally recognized that her problems were beyond typical, we turned to professionals for help.  Unbeknownst to us, they took my food allergies and her food fears and began twisting them all up in gordian knots behind closed doors.  While every word they said to me was true, it felt somehow wrong.
I was told that my food issues were definitely affecting my daughter, that I needed to get over that whole desire for a gluten free, allergen free house.  I needed to accept and conquer my fear of food (which, by the way, was a valid fear.  It took years for me to learn to cook safely for myself.  I still am surprised by reactions on occasion.  My diet is generally balanced, but it is not easy to learn or explain.)
I listened to short discourses on how my child shouldn't be subject to bad tasting food or deprived of normal dietary options just because half of our family unit couldn't ingest them without being sick.  I found myself carefully questioned regarding my reactions and my daughter's reactions, and given suggestions that boiled down to giving up my safety zone in the kitchen and during social events to give anxiety girl a false sense of normalcy when it came to dietary options.  (Not to mention the budgeting nightmare this could cause.)

Something in those words reinforced the concept that food allergies are something to be ashamed of.

I've been trying to work with these people by accepting that an inherent part of my genetic make up is flawed.  And that treating that inherent flaw is somehow shaming.  Something I can and should be hiding like a particularly disfiguring birthmark or hideous haircut.  But food allergies?
I've come away again and again asking myself what's the matter with an apple.  What is inherently wrong with serving roast chicken with root vegetables?  And if you get right down to it, is there something particularly shameful about not knowing the McDonald's drivethrough menu by heart?

I've been staying away from my blog (and the rest of my writing) because I left reality for awhile trying to find it.  I think we're getting back there.  Anxiety child and my original attitude toward food allergy (that they exist and happen to share a lot of so-called anxiety symptoms, and if you have a definite cause for debillitating symptoms you should avoid that cause if at all possible) are not actually related.  So now my goal is to pick up where I sidetracked; return to food power and allergy freedom while continuing to help my daughter, and all that good stuff.

The only thing is that in between, I was trying so hard to understand this 'flaw' that I began to believe it was true.
The only reason I've decided to share this revelation is because I can't believe I'm the only one who struggles with getting the right support from so called support people.  And I want others who are struggling to know that food restrictions, regardless of the cause, are not an inherent flaw.  Society places too much importance on the sharing of food.  You are what you think and feel and how you act...not what you do or don't eat.

She's better, right?

I don't update this blog as much as I used to.  Frankly, I just don't have as many upbeat thoughts as I did.  We struggle with the economic downturn, and we've hit a food plateau.  We also struggle, a lot, to understand and move forward with Anxiety.
Anxiety is a condition.  Like food allergies, it's not a disease.  It's something we need to learn to live with, to help her to manage as she learns to function in life's settings.
Recently, my daughter tried to go to an overnight field trip that the school offers every year.  They have nearly 100% participation, and the kids always have a wonderful time.  My food allergy kid came home raving about the menu and can't wait to go back in 2 years, when she's old enough to chaperone.  The younger one?
Let's just say that in nearly 15 years, she's the first one who couldn't make it through the first night. 
She woke up and went to school the next day, and sat with the younger classroom.  She helped a second grade class paint welcome back signs for her peers. She tells me she made a good decision.

Her peers? They seem to accept this.  Their parents?  They want to know if she's 'better yet'.  Did you take her to the doctor?  What did the doctor say?  But she's all better now, right?

No.  She's not 'better'.  She's in a holding pattern.  Right now, she's barely holding things together and all we can do is offer her a routine. And demand that she stick to it, no matter how hard she fights.

When do you think she'll be better, people ask.
Better, I tell them, is all in the point of view.
People tend to think that if you go to the doctor, and you pay out enough good money, then someone will do something and there will be a magical change.  There isn't.  The doctors can offer a diagnosis, which helps in itself, but not necessarily a cure.  They can offer techniques.  They can offer treatments.  But they can't offer a cure.

She's better, right?
There are no words to explain how isolating it feels to have the only thing other parents can come up with to say be 'She's better, right?'  Ask me who she chose to do a book report on.  Ask me how many laps she walked in the walkathon.  Ask me how I'm holding up, and tell me some miracle will occur and she'll be okay.  Let me know that your kid doesn't think mine is all that weird.  Or that you're trying to understand how to explain it to them.  Keep an eye out, and offer to walk her to class if it seems she can't let me go.  Call, let me know that she was okay when you volunteered at lunch.  Or that she wasn't, and you did something to help.  Or let's just talk about the weather for awhile.

Raising a child with anxiety hurts my heart in ways I didn't know could physically hurt.  It turns life into a jigsaw puzzle of moments, pieces that I can put together to paint a picture of happiness, or paint a picture of tears.  Or the real, convoluted picture that is our life.  The one where we never know what will happen when we turn around, or blink our eyes.  Where we jump when the phone rings, because although it's probably a telemarketer it might also be someone saying we need you, we don't know what to do.  And the horror of answering that we don't either, but are on our way.

I live in California, where gas prices are volatile.  Watching last nights presidential debate (with one ear, since the other was occupied with day to day living) didn't reassure me much.  Waking up this morning to find it will cost an extra $4 to fill my gas tank didn't help.
Sure, it's not that much.  But, $4 can put a complete meal on the table.  It'll pay for a dozen eggs and some veggies.  Or a jar and a half of peanut butter.  $4 isn't just a half hours worth of work for those working minimum wage, it represents what else we can buy with that money.
Maybe you haven't noticed, but money's tight.  Not just in my household, but in households across the state and country.  It's tight in the board rooms of businesses, of city offices, and it's tight in every school district I know of.
Every time I think that there's light at the end of the tunnel, a firefly flicks by.  I know the light is there, really.  I mean, those fireflies are getting in somewhere, right?  But that knowledge doesn't help when the kids want to go to a park that's not walking distance.  Or when my anxiety ridden kid wants a ride to school, and I know I can't carry her if she melts down.  Or when my migraneur needs a doctor's note reminding the school that migraines are not truancy issues.  Or when the school asks for donations and the kids don't understand why this time I said no.  Or when your daughter is struggling to participate in scouts because you really can't afford the new and improved materials.

I didn't mean to start a rant.  It just came out.  We're okay, really, we are.  Or we will be.  (That light is going to burst into view any second now)  But I did want to say, what if we all took a few moments at bedtime and just started a mantra.  Something to the effect of "We will get through this."  "We'll find a way"  "Hey, America, it's going to be okay."

I have to say, I felt chills when I heard the term "Clean Coal" last night.  We have to get through this, but we have to get through it without sacrificing our children's health and future.  Our lifestyles are not sustainable.  Until we make them sustainable, and make sustainable lifestyles affordable to the masses, we're just putting bandaids on the real problem.

That's my opinion, anyway.

When Hungry Kids Don't Eat

Hungry kids eat.  This is the premise of most articles on picky eating.  It's the premise that any good pediatrician works with when they discuss picky eating, and it's the one that nutritionists start with when they begin working with a new patient on how to create better eating habits in their children.
While this is an excellent premise, it isn't always true.  Oh, normal kids will eat if they get hungry enough.  But there are a few stubborn children who don't.
My oldest was the former.  She seemed picky at times.  There was the ball phase...where she would only eat food that was ball shaped.  Since this included grapes, peas and a full blown temper tantrum in the produce department over a bag of brussel sprouts (which she won; they were brussel sprouts after all) her pediatrician was more amused than concerned.  But the phases passed, and over the course of a month at any given time, her diet was relatively balanced.
Enter the youngest member of the family.  From the start, she had a cagey relationship with food.  She'd hungrily latch on and midway through a meal, arch her back and start screaming.  It took a few months and a bit of a rash to discover that she was allergic to the almonds and nut products in my diet.  As a toddler, she seemed to eat a varied diet.  Of course, it was limited in that we avoided anything with nuts.  But she ate squash, tofu, apples and cheese with relish.  She even tasted the lemon in a box of sushi we once purchased.  Somewhere along the way, she started getting pickier though.  Food couldn't touch any other food on the plate.  If a cookie or breadstick broke in two, she'd collapse into inconsolible tears.  'She's tired', we told ourselves.  Even if she'd slept well.
Then there came a variety of diagnosis for the rest of us.  Our family diet became more limited, and it seemed logical that she would balk.  We've been juggling this attitude for years now.  I don't want to be a short order cook.  But she needs calories.
Some nutritionists suggest using pediatric 'milk shakes' similar to ensure.  Unfortunately, I've taught the child to read and some logic skills.  She won't touch a chocolate shake for breakfast, and the ingredient list just makes her think I'm trying to hurt her.  They suggest occasional trips out, fast food is affordable and it's high in calories.  But it's never been in our diet so she gives me a squinty eyed suspicious look.  Besides, her sister can't eat most fast food.  Why would I treat bumblebee to a dinner out when she's been incorrigible?  Right.  I wouldn't.  Scratch that idea.  What about soda with her meals?  She won't touch it with a ten foot pole.
After talking to a nutritionist and doctor, I find myself wondering if by serving veggies and water when the kids were little I somehow set up a junk food deficiency.  Wouldn't that be a good thing?  I suppose that depends on if the kids eat.
What happens when I decide I can be as stubborn as she is?  Recently I stopped worrying too much about what she ate.  She was pulling these tantrums over food, where she'd sit at the table with a plate of food in front of her and crying because she was hungry.  I took my cue from her newest therapist and shrugged.  There was food, tasty food.  There was food available.  I saw some of it enter her mouth.  If she was going to cry about it, I wasn't going to stay in the same room. 
She lost 10 pounds.  And then was hospitalized. 
Hungry kids don't always eat.  At least, not enough to keep themselves going and healthy, even if you make sure the foods they need are readily available. 
Several thousand dollars later, we're no closer to an answer to picky eating.  Our recommendation is to feed her anything at all she's willing to eat, even if I have to go out at 2am.  But, don't become a short order cook.  Make one meal and if she eats, great.  Hungry kids, after all, eventually eat. 
Please tell me I'm not the only one who thinks that's conflicting information?

The Power of "Can't"

Today, my daughter concluded her current extracurricular activity.  She worked behind the scenes to keep a performance running smoothly.  The reward was a small, supervised party followed by an unofficial trip to the local snack shop.  I heard about the unofficial part when making arrangements to carpool and the other mother asked if my child was going to the second party.  You see, the younger kids usually don't.  But Penguin isn't a younger child anymore.  She crossed the barrier into 'big kid'.  In fact, soon her friends will include a series of licensed drivers.  Yikes.
I weighed the question carefully.  The main question being why hadn't my daughter been the one to ask if she could go?  Did she want to?  Did I want her to?
"I'll have to get back to you," I told the other mom.  
Honestly, it would have been easier not to worry about it.  How would she get there?  How long would she stay?  As an unofficially supervised outing, what sort of adult influence would be present?  I could just pick her up at the proscribed time and bring her home.
Ironically, most of my concerns vanished as soon as I asked Penguin if she wanted to go and she answered no, with a shrug.  "I mean, I do want to.  But I can't and that's okay."  She left the words between us with a smile and turned back to her drawing.
"What do you mean, you can't?" I asked carefully.  In my head were a number of scenarios, the 'mean girls' attitude that is common among her peers being forefront.  Up until now, this group of kids has been friendly and embracing; clamoring for her attention.
She frowned at me.  "Food?  They're going there for ice cream, and it's just easier if I don't go.  I can't eat anything."
She said it flippantly.  Off handed.  Accepting.  Like she'd come to the brick wall in a maze and instead of feeling around to see if it were an illusion, she turned around and continued on her way.  But it felt like someone had just knocked the wind out of my sails.  Food allergies.  The brick wall we've been telling her doesn't exist for the past 5 years.  Yes, you have to avoid certain food.  But we'll find a way.  We'll make arrangements.  We'll make it work.
And now?
"Yes, you can!" I told her.  I pushed logistics and carpooling aside.  I told her she didn't have to eat, that just going could be fun.  I told her that she could ask for just a fruit bowl.  That they might sell juice (Overpriced and under-filling, but it's something).  I found myself selling an outing most parents were probably on the fence about.  Suddenly this outing, this little social sidestep became important to me.  And the way her face lit up with a slow, dawning smile of hope makes me think it was important to her, too.
I've realized over the past year or so that food allergies have really created a barrier for us, as well as a handy excuse.  There are a multitude of reasons we don't go to a movie theater, the primary ones being both physical and financial.  But it's that airborne corn allergy that I cite.  Even though I can't afford to spend nearly $10 a ticket on a 90 minute escape from reality (that may or may not be worth watching on a big screen), it feels horrible to state it out loud.  And the two facts are both perfectly valid and completely honest.  If I were given 2 free tickets to the movies, I'd send my child with a friend or relative because physically, it's not safe for me to go (just as it's not safe for me to eat in a restaurant; although I occasionally brave the atmosphere)  If they were to purge the theater of popcorn and air it out thoroughly, I'd still not go because of the cost.  And there are so many other things on my plate right now that a trip to the movies isn't even something I'm missing.
But, my children may see that as a barrier.  Food allergies = I can't.
I can't eat out.  I can't go to a theater.  I can't participate in birthday parties.  I can't be normal.
Like every other food allergy parent out there, my definitions of 'normal' changed the moment that food allergies came on the scene.  At first, it was for my kids.  When I was diagnosed, the lines of normal and martyr and sacrifice and safety got murky.  But we're redrawing them.  Normal isn't eating out nightly.  It doesn't have to be something we hide or are ashamed of.  Food allergies aren't something to be ashamed of.  They simply are a part if who we are. 

Anxiety Vs Food Allergy

A long time ago I was told I 'just' had anxiety.  My symptoms were in my head.  This confused me, since I wasn't scared.  After being reassured that there was nothing wrong, my symptoms irritated me more than anything else.  I would give myself stern talkings to and force myself to go participate, do something when I was feeling ick.  I indulged the avoidance only in two ways...I wasn't crazy about movie theaters (at least, going there with family members who generously treated me to what I now know was actually causing those anxiety symptoms) and restaurants, where the 'anxiety' symptoms sometimes became unbearable and once or twice crossed a line to embarrassing.
Once upon a time, I believed that what I felt was anxiety of some sort.  I learned what I could, applied what I read to my symptoms and carried on.  Until discovering that I had food allergies, of course, and eliminating nearly all of those nasty 'anxiety' symptoms.

My daughter is 10.  She was diagnosed with anxiety issues (The original diagnosis was 'some sort of anxiety disorder') 5 years ago, when she was in kindergarten.  Since then, we've worked with multiple doctors and a large handful of therapists/psychiatrists.
I've had to relearn everything.  When they called my nausea and cramping a 'nervous stomach' and the hot flashes and faint feelings 'nerves' and the hives and racing heart a 'panic attack'; they did a grave disservice to those who really and truly deal with anxiety.
I know what it's like to experience these symtpoms.  But my daughter experiences them along with the sensation that her very life is in danger.  She doesn't just feel 'scared'.  She goes into fight or flight mode.  She doesn't strike out in anger, she strikes out in self defense.  It's us who 'don't get it'.
When I look into her eyes during certain 'temper tantrums' I don't see a kid who wants her way.  I see a trapped animal, who is looking for a way out.
She's a normal kid.  She has real, honest to goodness temper tantrums and breaks down into 'I want my way!' kind of tears.  But that doesn't make the other kind, the ones that sent us looking for help, any less real.

I'm also learning that real, full blown, actual clinical "Anxiety" can coexist with something else.  I don't know what's going on in her little body, because when we or the professionals try to ask more questions to help clarify, her anxiety takes off.  It interferes with her ability to communicate.  It interferes with her ability to rationally interpret the signals her body sends out.  It might worsen headaches or stomach issues, but it isn't the cause of random fevers.  And I really don't know if it's the sole cause of those headaches and stomach issues.

Eight or so years ago, I went corn free and gluten free.  I thought that was hard.  I thought it was overwhelming.  I thought it was the most challenging thing I'd face.  But I was wrong.  Food allergies are a known target.  They are something that you can identify, and work around.  They are something you can at least understand and educate others about.  Anxiety?  That one's still a mystery.