Saturday, October 13, 2012

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.

Thursday, October 04, 2012

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.

Saturday, July 21, 2012

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?

Tuesday, July 10, 2012

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. 

Tuesday, July 03, 2012

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.

Monday, June 11, 2012

Some days, I feel like my heart has been broken so many times that there is just an empty shell, where I try and paste the pieces back together every now and then.  I watch my daughter struggle to keep her emotions in check.  I do my best to keep her environment safe so that if (and often when) she loses control, she's safe and the people around her are, too.
Then I field comments from those who don't get it.  Unfortunately, that's nearly everyone.  "You really need to nip this in the bud," one nurse told me.  I had to bite my tongue to keep from retorting that it's too late.  I've spent years asking for help.  I spent years trying everything they told me.  I spent years ducking my head to hide the tears when the professional I was working with said that if I really was taking her advice it would be working.
Some days I feel like I've spent years pulling my family apart, just to make things worse.  A label.  We finally have a label that seems to give us permission to backtrack.  That label tells us that we aren't crazy.  There really is more going on.  It's a buffer between what should work and what really does.  But it doesn't cure anything.
Taking care of a child with anxiety is like watching a train approach a break in the track.  You know you can't get ahold of the conductor.  You can do everything you know how to minimize the risks and damage.  You can clear the area, try to shove part of the track back into place and hope it holds.  But you can't fix anything.  The train is going to come by.  All you can do is stand at a safe distance, try to catch the conductor's attention so he'll slow down and pray that all your worry will be for nothing.
Sometimes, she'll surprise me and sail right through that bumpy track without so much as a jostling her passengers.  Other days, it's as if a quarter was left flat, something I totally missed, and it's just enough to veer her offrail.  Unexpectedly, we're calling in damage control.  Emergency vehicles.  Sometimes, we over react.  Others, we don't move fast enough.

Tuesday, May 29, 2012

Putting Things in Perspective

Over the past several years we've come to just assume what I 'can't' do.  It's obvious that my stamina remains low, although it has improved.  My poor husband vacillates between assuming I have energy well beyond my ability, or that I am practically an invalid, completely incapacitated.  Neither, of course, is true.
But today, we went for a walk.  In fact, the kids and I traveled all the way to the local park.  Without a car.  This doesn't seem like much of an accomplishment, as the local park is just within a mile of our house.  But, as I walked past the parking lot towards the playground I let my mind wander back over the past several years.  Back to when my oldest was just about 7 or 8 years old, and my youngest was 3 or 4.  When my diagnosis began, and my recovery was just beginning.  We'd spend a lot of time at parks back then.
Unfortunately, this specific park was never one of my favorites.  I had to laugh when I remember why.  I'd pull into the parking lot and the playground itself felt like it was an insurmountable distance away.  And the restrooms were so far from the playground, that it seemed ridiculous to me.  "Who would plan so poorly?" I'd grumble as I plodded back and forth with kids who just wanted to have fun.

Of course, today things were much different.  Not only have the kids reached an age where they are able to moniter themselves for the time it takes me to use the restroom, the playground doesn't seem nearly so far from the parking lot.  Or the restroom.  In fact, the park itself "feels" walking distance from my house.

Even just 2 years ago that wasn't the case.  I know this is the result of improved muscle tone, the ability to actually digest some of the food that I consume, and I'm certain that my weight (still a steady 112!  I've been over a hundred pounds for a year!)  has something to do with it.  But it still feels great to put things in perspective.

Some days, I'm tired, overwhelmed and depressed.  This condition, trying to learn to manage corn allergies and celiac disease and everything else while raising a family has limited my life in many ways.  Money being, of course, the biggest concern.  When things get hard, I forget to look at the light.  How far I've come towards the end of the tunnel.  How much I've put behind me.

How much we've all lived through and survived.  But we have survived.  We've thrived.  And hopefully, we're all a little bit healthier for it.

Wednesday, April 25, 2012

This is why we're Generation RX

Day one: "I feel sick"; pale, deep dark circles, nausea, not eating...she stays home and sleeps.
Day two: "I'm going to throw up," she stays home and sleeps, eventually eating in the evening and then feeling nauseous partly from not eating to avoid throwing up.
Day three: "I'm hungry," but she still wants a bucket nearby, just in case, and her hands and knees are still shaky from 2 days home sick, sleeping and not eating.  She can't make it to school for a full day, but she's definitely on the mend.
Day four: School will not allow her to return without a doctor's note because she's been sick.

At no point in that process did she need to be seen.  She was hydrated.  She was keeping sips of water and juice down.  Any doctor can tell you that viruses do not respond to antibiotics.  Stomach bugs are miserable, but unless there is dehydration, they just need to be waited out.  Follow the BRAT diet.  (That's bananas, rice, applesauce and toast)

So, now that she's feeling better, she needs to be seen.  And if she feels worse tomorrow and actually needs to be seen?  That's another copay.  And a dr who sees an overanxious mom rather than a kid who was sick, got better and then suddenly took a turn for the worse.

I can see why doctors are pressured to hand out antibiotics and unnecessary tests.  It's not just the parents and patients who jump the gun.  It's the societal pressure; the red tape and rules that society members need to navigate.  Some people get hit harder than others with a cold or flu.  It doesn't always need medical intervention.  Getting that doctor's note confirming it, though, may take away not only open appointments from people who need them but costs insurance and patients a lot of money.  It's not about the money, but if that cold costs a hundred dollars in copays to prove to a school or boss you were not functioning, you're not going to want to make an appointment for that strange lump you noticed under an arm or any other non urgent seeming symptom.

I don't know what the answer is.  But it's something that a lot of people don't seem to realize is much of an issue...probably because they happen to have really strong constitutions or never get sick to begin with.  So I thought I'd blog about it, before bringing a child on the mend to the doctor for a rather expensive "I agree she looks like she's recovering" note.

Sunday, April 22, 2012

Earth Huggers

Earth day is here.  Corn allergies make one much more in tune to what is going on in the environment.  Pesticide residue, genetically modified organisms and the honey bee disappearance all seem to appear when you start asking questions about corn and corn syrup.

And then there is the food supply.  Artificial food colorings are derived from what?  Crude oil?  I'm not allergic to that.  I don't think.  But do I want it in my body?  What else is in our food that we don't know to think about?

Earth day is the day to remember to ask.

What are we doing to save the Earth?  Probably not nearly enough.  I still drive more than I'd like.  My car isn't electric or even a hybrid.  We still use processed foods, and my garden is a hopeless tangle of weeds.  But, this week when my husband took the trash out on trash night he popped his head back in to say "Really?  There's just one kitchen bag full of trash out there.  Are you sure we emptied all the cans?" (Yes, we had!)  And then he informed me that the recycling bin couldn't quite close all the way.  Good news for Earth week.

Friday, April 20, 2012

The Secret Power of Plants

Today, I found an article that talks about plant intelligence.  Essentially, plants are naturally hardwired to survive.  They also work together to fight off insects; and will share the nutrients in the ground with plants of their own species while greedily growing in the presence of 'strangers'. 
I read that article, and the one it linked off of.  It made me think of genetically altered varieties.  What happens when we begin injecting DNA with new material?  Do the plant messages get along?  Do they send conflicting messages?  How far can it go? 
Food for thought.  Plants have adapted at a natural pace; making peace with their DNA in their own way over the past millenia.  They've created a variety of defense mechanisms that we can only begin to think to look for and learn about.  How can we study the repercussions of things we don't know were there to begin with? 

Tuesday, April 17, 2012

Food allergies are not a disease.
Some days, I get frustrated.  Living with a food allergy is not akin to being permanently ill.  I'm not on death's door.  Food allergies are not a life sentence.  And yet, as a chronic medical condition, it's hard to stay out of patient mentality.

Earlier, someone told my daughter that it must be hard to have her mom so sick all the time.  Immediately, I fell into the trap.  Other food allergy sufferers, especially those with a corn allergy, may know the trap I mean.  The one where you flash, quickly, on evenings when you really wished you could have gone out to dinner.  Or birthday parties where you had to abstain from cake.  Or that awesome gingerbread house that you didn't dare let get through the front door.  You're assailed by memories of the days when you gave in and paid for it, the nausea and cramping, the sound of kids voices in another room as you curl up in bed biting your lip to avoid groaning.  This is accompanied by guilt, and a knife like shame.  Yes, I'm sick all the time.  Head down.  It's hard.  Half smile, shrug.  We survive.

Today, I read this article on Facebook and thought 'that's great'.  A cure?  More money for drug and vaccine research?  Wait a moment.  Food allergies are not an illness.
We don't need another medical condition treated with more drugs.  We don't need more vaccines to try and combat the damage we're doing to our bodies and the environment with our questionable diets and pesticide and herbicide use (both on farms and around our homes)  We need to take action.  We need to do something. We need prevention.

I'm not saying I don't want to cure anaphylaxis.  Peanut allergies terrify me.  Even as a food allergy parent, I'm more than a little nervous inviting a nut allergic child over.  Not that I don't want to include them, I just don't want to be responsible for harming them with the jar of peanut butter I've kept in the fridge since Bumblebee passed her challenge.  But combating allergies and anaphylaxis with more new innovative treatments just makes food allergy into another illness we need to cure.  It removes the focus from prevention and understanding.  (What's wrong with our environment?  How can we avoid triggering them in the first place?)

The earlier comment was followed by a discourse on time in the doctors office where both my daughter and I shifted uncomfortably before changing the subject.  We don't spend much time with a doctor now that I'm diagnosed, now that her sister is diagnosed.  There's just no point.  As a food allergy sufferer, I simply live a different kind of norm.  As a corn allergic individual, my life tends to be even more limited.  That doesn't mean I'm sick all the time, just that I'm less reliable than many.  I'm more susceptible to environmental issues like popcorn and cleaners.  It's a frustrating theory to relate.  I missed a large portion of my life to 'being sick'.  Ironically back then, prediagnosis, I didn't have a label so I was just...spending a lot of time in bed and in the restroom.  Now that I have a label and am managing symptoms...I have the reputation of being always sick.  It makes me forget that other parents get tired sometimes.  Other parents get headaches, or come down with the flu.  Just because I don't feel up to inviting someone home doesn't mean that I'm 'sick all the time'.  But somehow, because allergies lead to that patient mentality, I feel a sense of guilt. 

We need to do something.  Not just research for cures, I'm not looking for more medications.  We need to find the root cause so we can address it as a society.  Food allergies aren't just something that affects someone else.  The first reaction can occur any time during one's lifetime.  Between 2% and 10% of the population suffer from allergies; and the CDC reports that the number of children affected has risen 18% between 1997 and 2007.  Food allergies aren't the only childhood condition on the rise.  Asthma, autism, ADHD, and diabetes are just a few of the new childhood conditions frequently seen by pediatricians.

That tells me that food allergies aren't a new illness to treat, they're a symptom of something bigger.  With all the additives and preservatives in our food supply, and the GMO's that aren't currently labeled , and the lack of open space for kids to run wild in and the multitude of vaccines given before the third birthday and...well, the list gets pretty long.  Which is causing the problems, or is it a combination?  Food allergies are a lifelong condition; a symptom of something wrong in our environment or our lifestyle.  There isn't a simple cause and effect to track.  The cure is to find out what the overall trigger is.  Looking for new ways to simply overcome our immune system pushes us back to a sense of victimization.  Searching for a cure puts the power in the hands of drug companies, when in fact we need to be united.  Food allergies aren't a disease.  They're a reason to eat healthier, to be more informed and to take control of our lives (and our health) again.

Saturday, April 14, 2012

Ways to Make a Difference

If corn allergy (or intolerance) has touched your life, consider joining the write in campaign.  Nicole over at Corn Freedom is spear heading the plan to raise awareness; especially among the medical community.  Erica has more information on her blog, Corn Free Lifestyle.  While they are looking for all aspects of corn allergy, they especially want to hear from individuals who notice neurological and behavioral responses to corn exposure.  It doesn't have to be long, just a few succinct paragraphs.

Another way to make a difference is to join the Just Label It campaign.  This one isn't corn specific, but the goal is to get GMOs labeled.  Those of us with corn allergy know how vital it is to be able to control what we put in our bodies, what we feed our families.  It's an essential part of managing our health.  Many of us suspect that GMOs may be partly responsible for the rise in food allergies.  Whether that's true or not, we deserve to make a choice...which means we deserve to have our food clearly labeled.

Wednesday, April 11, 2012

A Day in the Life with Corn Allergy

Corn allergy.  At first, this diagnosis was overwhelming.  It was consuming.  It was defining.  And yet, it was freeing too.  It's difficult to express how it feels to finally have validation.  These symptoms, these real and debillitating, seemingly random symptoms, were not 'just stress'.  I did not need a psychologist, or a psychiatrist, or a really good massage (although that last one might have been nice!)  I simply needed to change my diet, and subsequently my lifestyle.
The diet itself has been eye opening.  I am blessed to live in a state where farmer's markets and fresh produce are available year round.  I can get to the health food store in under twenty minutes.  So, while my diet may not be all that varied, at least it's survivable.
Our day to day life has evolved to include these corn restrictions (and the rest of the family's restrictions) to the point that it's matter of fact.  I don't share meals not planned with me in mind.  I don't eat at family gatherings, unless I bring my own food.  I don't eat out.
It's not that big of an issue, unless other people ask questions and remind us that it is an issue.  Our lifestyle, to the outsider, seems unique and quaint.  We're health nuts, who eat a lot of chocolate.  We're organic.  We're...well...different.  Everyone's different.  So, in our day to day life, that part doesn't bother me.
What I live in fear of are the few days a year when I can't do it alone.  The days when I need to go to the dentist, or the doctor.  These are the days when I need outside help.  The days I'm least able to self advocate, most vulnerable, and most desperate.  You see, corn derivatives show up in medical supplies.  Although I was diagnosed by a medical doctor, who urged me to look deeper, she herself was surprised by what I found.  And insurance issues coupled with the economical downturn have forced me to seek medical care from new doctors, new health centers, new providers who are not so sure they really believe in 'corn allergy'.  Or, if they do, are fairly certain that corn derivatives rarely make their way into pharmaceuticals.  Instead of a simple diagnosis and prescription, my office visits often end in a frustrating cycle that sends me back and forth between a pharmacist and the medical provider, with a nurse intervening who reassures me that my worries are foundless or simply explains that they don't cater to those kinds of needs.  (Only to huff and grumble when I ask them to direct me to someone who can help me, and how exactly I can tell the difference from the anticipated reaction to corn derivatives in the medication and a worsening of my condition that merits immediate medical condition.  After two or three individuals have received the same question, someone eventually finds in my records that I do, indeed, already have a compounding pharmacy that does, indeed, manage to suit my needs.  And after's only once or twice that the prescription gets rerouted to the wrong pharmacy.)  As you might imagine, I'd rather avoid the fuss.
Day to day, I can make it normal to keep tabs on popcorn related fundraisers so I can make alternate arrangements for my kids that day.  I can wear a mask to the farmer's market and the mall that includes a movie theater.  I can skip food related events or finagle my way through with as much finesse as I can wrangle for the evening.  I can prepare 3 meals a day, forgo yeasted breads and make my own broth once a week.  I can clean with vinegar and baking soda, and use safe soaps on my dishes and clothing.
But I can't make my own medication.  I can't diagnose myself.  And I can't get help if and when I need it; unless the person I'm addressing takes my explanations and concerns seriously.  I know how it sounds "I'm allergic to corn...wait, are there corn derivatives in that IV?  In this pill?  Are your gloves dusted with cornstarch?"  But I've learned the hard way, time and again, that I'm not just paranoid.  These are valid concerns.
So my pain killers are compounded, with weeks worth of effort put into the signature authorizing it.  I can't take most nutritional supplements although they'd do me good.  And unless it's serious, and I can convince a dr and a pharmacist to work together on a solution, I skip the meds and go to bed.  it's the one part of 'normal' I can never normalize.  A simple sinus infection is drama.  I don't want to know what happens when it isn't so simple.

Tuesday, April 10, 2012

Why is it that we have to work so hard to avoid questionable ingredients?  Why should it be so expensive NOT to eat food created in a laboratory, that took millions of dollars worth of research to develop.
As consumers, we have the right to choose.  It shouldn't cost more to get pure, old fashioned, real food.

Friday, March 16, 2012

Childhood Anxiety

Anxiety in kids.  I've been trying to help Bumblebee for years now, with the wrong understanding of Anxiety.  It's real, it's physical, and it's just as dangerous as Anxiety and Depression in adults is.
I know I haven't been posting much lately.  I just feel so overwhelmed with trying to find the tools she needs.  I thought corn allergy was hard.  I thought migraines were difficult.  I thought the casein free, gluten free diet was big.  But those had tangible culprits, something specific that we could categorize and address.
Anxiety is so much more.  It's buried deep inside, it's complicated.  And it hurts just to watch someone suffer.
I'll leave you with this comment from Bumblebee.
"Why shouldn't I hit people?  People hit me all the time.  They hit me with their words.  They hit me with their words more and more and more, and the nicer (the words) are the harder they hurt."
I didn't know how to respond to that and it breaks my heart.  (I stopped talking and just held her until she stopped fighting and snuggled.)
We talk to doctors, we look for help.  I suppose the fact that she can verbalize that message is a good thing.  But I can't begin to express what it does to my heart.