When I first started this blog, I envisioned letting the world in on the trials and tribulations of living with a corn allergy.  In fact, I envisined a lot more triumph than continuing trial. 
Unfortunately, as I look back over the years, I see that I've led followers on a confusing voyage...not just corn, but other food intolerances...Not just food intolerances but a host of other, unique and nonsequitor ramblings.  I've let you into my life (which is awfully corny for being maize free) and ranted about GMO. 
All of which are important, in some step of the grand scheme oft hings...but not necessarilly quite what I anticipated doing.  (Luckily, I'm told this is what blogs are for...artless ramblings about everyday things.  Sometimes with a running theme) 
I just want to thank you all for hanging in there with me.
I've discovered that I'm not just dealing with a corn allergy.  I'm not sure what it is yet...although after years of looking, you'd think I'd have an inkling.   I'm getting closer...maybe.  And I'll keep you all (somewhat) updated. 
Meanwhile, I'm going to try and get back on track to the trials and tribulations...focusing on the tribulations...of life with food allergies. 
It's not easy to live with restrictions.  But the challenges presented in life should enhance it, not dull it.  Challenge adds flavor.  I've been looking at the boundaries as if they were a prison of sorts. 
I'm adapting my New Years resolutions to include embracing these boundaries.  So I can't walk out...I can still fly.  (I'm working on those wings, and promise to keep them well away from the sun.) 

(And for those who read my earlier diatribe on finance and food allergy...tonight's dinner was rice pasta, egg and a few veggies.  Approx $1.25 per serving.  Last night I served veggies, pasta and some sort of Trader Joe's meat protein for the girls.  It came to closer $2 per serving.  Still, not TOO bad.  Although Bumblebee supplemented hers with crackers.) 

Missing the holiday spirit...

Last night, as I lay in bed trying to discern the reason I'm not quite into the holidays this year, it came to me.  Although, I've felt worse some years...and been mid diagnosis some years...I've fought hard to get out,  get baking, to grasp the little things and play them up.  This year, we have our gifts together and the tree up, the elf is finding new spots to hide, the kids are giddy with excitement...and yet the baking isn't even done yet.
Every time I think of it, the nausea is still too much.
And I feel down.  Really down.
As I lamented to my husband the lack of excitement, and that all I really want to do is curl up and enjoy the days with him and the girls, it occurred to me that my lack of social graces is mostly inspired by...shame.  After 10 years...I have a diagnosis.  I'm intolerant of or allergic to corn.  I have Celiac Disease.  And the two conditions have triggered multiple other identified intolerances.  I've just been treated for H pylori.
I should feel great, right?
I'm exhausted.  I'm sleeping more often than a 3 month old.  My abdominal region feels crushed, bruised.  I'm desperately trying to eat enough to keep the scale from dipping under 90 lbs.  And at my last dr appt, the dr flitted her eyes around the room, then shrugged and buried her nose in the notepad in front of her, not even writing...just tapping. 
That tapping, the not meeting my eyes, the little frown...the shrug and release to a dr I've never met who can't see me for a month...not reassuring.  There's a diagnosis missing. 

In the past, by Christmas, I've been optimistic.  I've thought I had the answers I needed, and believed I was on the mend.  I could answer questions positively and clearly, or simply evade them by pretending I wasn't that bad.  This year, I'm lighter than I've been in at least 5 years.  I can't stop bleeding, and I'm not buying perimenopause 'nothing to worry about, just be patient'.  The nausea and cramping are really bringing me down.  I'm not playing poor me...I'm trying to simply state the facts.
I'm also worried about my daughter who has developed trichotillomania, or the urge to pluck out her eyelashes methodically.  I know this is the right diagnosis, although so far my attempts to get her help have not really led anywhere other than "Tell her to stop!"  Which, of course, I've tried.  :P
While I love hanging out with family, and I would love to have a get together, or attend one, I've felt up to either for a full...oh, five?  Fifteen?  minutes at a time over the course of the past 3 months.  I'm really hesitant to make plans because of how bad it makes me feel to leave early or change my mind last minute.  I'm haunted by memories of discomfort and reactions.  I'm withdrawing from questions because I have no answers.  And I'm avoiding...because I'm finding that after years of this whole sick-at-the-last-minute business, even those I love are starting to think I'm choosing others first.  When the truth is, I'm embarrassed that I'm still sick, that my stomach is threatening (and I'm now aware that I'm the only one fighting to keep her digestion under control), that I don't have answers and am starting to give up finding any.
(I didn't say that I'm giving up.  I'm saying that I'm starting to give up hope of finding answers.  There's a huge difference, as I found myself trying to explain to my husband.)

In past years, I've daydreamed about hosting parties.  I've enjoyed getting together, if only for an hour, with loved ones and family.  I've told myself that this will happen, someday, when I'm better.
This year, I'm not so sure. 
My goals for the new year are to get the house clean again, to get food under control, to get help from the medical community.
Humble enterprises.
I thought by now I'd be farther in my journey.  It's hard to admit to myself that what I thought was the bigger picture is only a few puzzle pieces.  And I'm wondering if the missing diagnosis could possibly explain both the food reactions and the menstrual irregularities. 
I suppose you could say that I don't want to ruin anyone else's holiday with my own frustration and shrugged shoulders.  I'm disappointed that the answers gained over the past few years simply aren't quite good enough, and I'm ashamed of where my limitations have led me, and uncertain what lies ahead.
 So this year, while I'm thinking of family and friends...I'm going to be happy that they are celebrating.  I'm sending best wishes.  And I'm hoping that they understand why I'm playing the Christmas Card friend (which reminds me...I never did get Christmas cards mailed...make that a 'New Years card friend') instead of a hostess.  I'm going to focus on what I am up to instead of worrying about appearances and what I'm not up to. 
And I'm going to try really hard not to feel guilty about it.  It's the holidays, and even if I'm still climbing my way back up from my last reaction and the bout with H Pylori, and still seeking answers, I'm going to salvage what I can...even if it means sacrificing what I wish I were doing.  I'm going to enjoy Christmas, regardless of the social aspect...or lack thereof.  And in the new year, I will find healing, and strength.  And maybe we can get together 'just because', and celebrate friendships and family without the stress of holidays as an excuse. 
If there are other readers struggling to find missing pieces and feeling discouraged, I just wanted to let you know you're not alone.  Let's band together online, and embrace our strengths...accept our weaknesses...and just enjoy the day. 
Happy Holidays. 

The trouble with being a full time homemaking mom is that there's plenty of leeway for adapting my activity to suit my physical needs.  And so, as nausea and cramping and general fatigue increase, I instinctively adapt.  But there's very little gauge, from my end of things. 

It's been years since I spent my days going from bed...to an internal soliloquy about getting back to a heating pad...to crawling back into bed for a brief reprieve.  It's been years since a little old lady cornered me outside a public restroom for going out and about and exposing the rest of the world in "my condition".  It's been years since I shot up 3 waist band sizes in an afternoon.  Or vomited blood. Or even curled up on the bathroom floor and wished I could just fall asleep and not hurt anymore. 
Put in perspective, I'm doing great. 
I get frustrated sometimes...but I don't wonder how I'm going to find the strength to walk from the car to the school and back. 
So it caught me by surprise to have my husband tell me he was worried.  I've been slacking off, I know...but I've been feeling 'bleh'. 
At least since September.  And we had a rough summer.  And I've been hormonal. 
Gently he pointed out that according to my faithful little planner that I record in but ignore, I've been 'hormonal' since May.  And nauseous.  And that my diet is dwindling again.  (variety wise, not calorie wise!)  In his eyes, I'm slowly fading away and it's scaring him. 
Of course, I had no response for that.  Other than to splutter that of course I had been eating a lot of rice...it settles well, and there were things I didn't want to miss.  I haven't lost that much weight, I think.  (He didn't actually have to say "You're missing them anyway")  I paused.  I harumphed.  I called.  I made the appointment. 
I wish I could say it went well. 
The first time the dr asked if I was taking any medication for my Celiac Disease, it didn't seem unusual.  But the 3rd time, I got an uncomfortable feeling that I'd just wasted a copay. 
I explained to her about corn, and at least that's in my record now.  They took enough blood to put my entire arm to sleep, and I'm enormously relieved to find that the phlebotomist was understanding about my freaky rolling veins and patiently used a child sized needle.  (It takes twice as long, but is less likely to lead to a lost or collapsed vein.) 
But I pretty much left with the diagnosis of..."You're skinny.  You need to gain some weight." 
Which seemed obvious.
The GI will call if they need to see me.  Maybe the blood tests will be enlightening.  But I have a sinking suspicion that I'm stuck with "skinny". 
At least it's a new diagnosis.  Usually they just say "Huh, that's weird.  Maybe it's just stress."  

Time in a bottle

Some days I wish I could simply bottle. 
It's Labor Day weekend.  We should be going to a park, or the zoo, or cleaning out the garage.  We probably should be barbequing.  Or shopping.
Instead, I'm sitting at the computer, listening to the chatter of two voices and the clink of their toys as they create a wonderland in the livingroom.  There are corrals set up around the fireplace.  Toy bins have been upended to make either traps or houses, it's hard to tell which.  Molded plastic horses, and kitens, and dogs and jungle animals are carefully laid out in intricate interactions across the floor.  There are strings draped from chair rungs to plastic hooves, and bits of paper shredded and piled as 'winter preperations'.  There's giggling, and I catch bits and pieces of phrases like "Oh, wait...no, I have it...they should..." and "That's a great idea!  And then..." 
I let the moments wrap around me, holding my breath when I slip into the room, watching their heads bowed together over a cheap plastic saddle, and slipping out again, careful not to diturb their game. 
We don't get full blown games like this very often anymore. 
There was a time when any item, any moment, every day was filled with fantasy worlds and magical moments.  But at 8 and 12, we're straddling the lines between child and teenager.  Family or friends.  Toys and gadgets.  Games and gossip. 
Today, I'm listening to the blossom of creativity as they dream.  Anything could happen. 
Earlier, Penguin asked for pizza bread, expressing a desire for some savory baked item.  We went online, then whipped together a cup of brown rice flour, an egg, some salt, oil and just over half a cup of water. 
Her tummy is filled with this concoction dipped in pasta sauce.  (her sister spread jam on it...Bumblebee believes anything baked should be sweet)  And I feel like it is a good day.  A successful day.  A fulfilling day. 
Even if there are dishes to do and no path cutting across the living room. 
There's laundry to fold, and shelves that need dusting...but just now, I'm going to close my eyes and listen to kids being kids.  Because today won't last.  And a camera couldn't hope to capture it. 

Recently, I requested copies of our medical history.  Instead of just sending them to our new doctors, I asked for an extra copy to be sent here, to us.  My intention is to keep a copy in my own files, so that I know exactly what the new doctors have on file, and I admit I was a bit curious, myself, to see something more than the simple test results that get forwarded to me.

In other words...what notes do the doctors make to themselves?

If I was expecting to find big, bold declarations of "OMG, corn is evil!  This woman must never be exposed to corn products!  Or gluten!" in decisive, red warning letters, I was sorely disappointed.  Corn gets a brief mention, and is followed up in several mispellings.  In fact, at one point it states that I'm allergic to "cort- meds" instead of corn in meds.  There is a cataloguing on symptoms that wane and wax, a lot of "symptomatic relief through dietary measures" and "told to continue". 

Maybe my diagnosis really is "interesting, very interesting."  (Just kidding.  It's actually "Probably stress related, but...")

I found it fascinating that while the corn, and the gluten, were in there, and validated...they seem such a small, insignificant portion of my medical record and my kids medical records.  There's much more in there on discussion about vaccines, or the fact that I actually ask questions about medical treatments or diagnosis (I also found that the question asking does not necessarily go over well.) 

I also found in there some comments that I haven't seen.  Some blood test results that the doctors made note they wanted to keep an eye on, while they reassured me that the results were meaningless and they don't need to follow up.  I'm not sure how to address that with the next doctor.

All fascination aside, it's left me thinking about food and diet and doctors.  How the AMA and various cancer societies, and even certain medical groups (*ahem*Kaiser*ahem*) have amassed campaigns to raise awareness about the important link between diet and health.  How questions about food seem to be one of the first that I'm asked when I present a digestive complaint to either my own dr, or the children's pediatrician.  And yet, in the grand medical scheme f things, that dietary journey really plays a small part in their thinking process.

My life has changed dramatically since giving up corn.  Pain is no longer consuming, although the threat of an emptying stomach lingers.  I've given up restaurants, and discovered that movie theatres make me itchy and make it difficult to breathe.  Dinner, lunches, parties, baking have all become challenges.  Simple social situations are obstacles in that the ice breaking meal must be avoided.  There are challenges in self consciousness, assertiveness, courtesy, and will power.  There's lack of spontaneity and the fear of food (ingredients, suppliers, labels) and how to balance living with living healthfully, There is obsessive compulsive label reading, often followed by company inquiries. 

And that all boils down to "advised to continue as it seems to help."

I've learned to identify corn derivatives by monikers like dextrose, cellulose, and citric acid.  I've learned to trace potential contamination from corn by processing lines, packaging and ingredients like "juice".  I've spent hours on the phone with drug companies.

I'm not sure what this feeling it leaves is.  Part is self doubt (although I can conjure the frustration I felt chained to the bathroom a few years ago after accidentally switching toothpaste with my husband.)  Part is frustration..."All you've had to offer me the last few years is 'be more strict with your diet, read labels better' and 'wait and see' so I've been driving myself batty trying to comply and the notes boil down to 'huh, probably stress, but diet helps?"  as if it's a secondary afterthought?
The Celiac part isn't even in there.  The shaky shivers and projectile vomiting is recorded as if I were trying to be noncompliant during a ct scan.  (In hindsight, the drink was flavored.)  The whole arm rash that followed the contrast dye isn't in there either.  I never did learn whether that was a corn reaction or some sort of iodine reaction. 
Perhaps I do complain too much.  But why do I end up losing weight and passing out if I ignore my symptoms and try to live my life the way others seem to live theirs?  Volunteering freely, walking a mile or more without napping before and after, showing up to stand on their feet even with a cold?  Why can't I breathe when trying to help with paper mache?  And why do I spend a month cuddling with a heating pad after trying to ignore airborn particles?  Or accidentally ingesting "real" corn derivatives?   Why doesn't pretending it's just my imagination banish it all to my imagination, especially if and when it's annoying not scaring me?  (And I do follow that path every now and then...am I concerned?  Not really.  Mostly annoyed and a little bit lost.  I want to be there, I want to be dependable.  But then, when I feel most confident, I'm floored.  Usually it's traceable to my getting cocky and missing some dumb ingredient because I was feeling great.  And then it's a painful trip back up to confidence.) 
Am I just crazy?  Maybe.  But then a lot of other people are crazy, too.  (And they seem to be following my same pattern.)  Maybe it is stress.  Stress plays such an intricate role in everyone's life these days.  And dietary restrictions are certainly stressful.  But ignoring them leads to more stress.  (Who can I call to pick up the kids?  Maybe I'll be okay to drive.  Or, um, maybe not.) 

Sometimes I wish I had the means to follow up on research.  To put all these pieces together and make something meaningful to bring to society and say "Look.  What we're doing is wrong.  Look, people are suffering.  Look.  There's an answer.  And it's not a pill."  Other days I wish there was a simple pill. 


At any rate, I see why corn allergy isn't headline news.  It's taking a backseat to other conditions the medical community tries to rule out.  It's not until a gung-ho professional starts to make connections, and see that medical equipment and procedures really are affected by the supplies and the ingredients used in treatments that studies will be done.  How many people will be dismissed?  Will continue to fight to follow that tiny thread of light through the dark maze of dietary questions?  Corn is just a kernel to most doctors.  For us, it's already popped. 

Blue Dye

It's out there.  It's a neurostimulant.  It's actually being used as an experimental treatment for migraines.
I knew that it affected migraines because several years ago, we traced some very spectacular looking migraines (total pallor, projectile vomiting, collapse) to blue toothpaste and pretty blue jellybeans used in math centers.  (Count the red and blue jelly beans.  Now eat the blue ones.  How many are left?  No wonder Penguin doesn't like math.)

However, the greater medical community (and the even greater American populace) seems to remain in the dark. 

I recently had yet another argument with a pharmacist about the relevance of inactive ingredients in medications.  She stated that it wouldn't be serious.  I politely replied that it would counteract our attempts to treat the migraine by adding new triggers.  She disagreed, because there isn't a lot of blue in the medication.  It looks white and red.

This is the trouble.  Even if people begin to suspect a trigger, whether it's for migraines or stomach aches or behavioral issues, members of the medical community dismiss them in a hurry.  They're too quick to cast shadows of doubt on people's personal observations.   They ignore statements.  Talk over people in reassuring tones.  And sometimes we let them.  I know I used to.  And sometimes, especially when I'm sick (and it's regarding me) I let them.

But this was for my daughter.  So I persisted.
We spoke with a new neurologist on Wednesday.  She was interested, and believed us about the blue dye being a trigger.

Unfortunately, she's never had to deal with the pharmacy and inactive ingredients before.  And apparently she's had as much trouble with them as we did.  I think part of the problem is that it isn't the neurologist's job to look at the inactive ingredients of a medication.  It's the pharmacist's job to find a suitable form of a prescription medication.  They are supposed to be the experts in formulas.  The doctors are supposed to know diagnosis, tests to use for diagnosis, and suggested treatments.  It's the patient's job to choose a treatment, in consultation with the dr, and then carry it out.  It's the pharmacist's job to assist them in getting the suitable treatment. 

But when they don't feel like helping, it leaves the patient high and dry.  The government is making it more and more difficult to access compounded medication.  Compounding pharmacists need to protect themselves in order to serve the majority of their customers; and compounding pharmacies are a dying breed. 

With the rising awareness of dye reactions, inactive ingredients in medication is going to continue to be problematic.  And misinformed medical personnel can actually prolong diagnosis if the patient believes, in error, that medication is safe for them.  If it should be safe, but it causes a rash, or anxiety, or depression, or insomnia...these symptoms could be construed as complications of conditions being treated. 

How many people take medicine for depression?  Or blood pressure?  Or ADHD?  Or countless other mild, but chronic, medical conditions?  Ones that include symptoms like headaches, anxiety, behavioral issues, insomnia.  How do you know of your symptroms are solved by a medication that can cause the symptoms you're treating?  What sense is there in treating my daughter's migraine with a medication that contains an ingredient known to trigger her migraines? 

I may not have a medical degree, but that doesn't mean I don't need an answer to that question before taking a chance.  I'm concerned for the individuals who miss the fine print, who don't question the pharmacist, who suffer in the dark. 

But I'm not sure how to fix it. 

Lessons from corn

Although I'd like to say that corn is pure evil, my sensible side keeps intervening.
It isn't corn that's inherently evil. It's what we're doing with corn, nature and everything else.

To paraphrase St. someone: The love of money is the root of all evil. And hence, the quest for money is at the root of all corn. That's what it all boils down to. Money talks.
Right now, money appears to grow in cornfields across the United States.

I've learned more than I wanted to about our food system. I've discovered that the FDA is a business, much like any other. And it's run by humans.

FAAN may have made a difference for thousands, but with all their knowledge and power, they still have an awful lot to learn. I'm only one of many learning from their mistakes.

Safety nets are often made of red tape.

I've learned that there are things I don't want to know or learn. Food was supposed to be easy. You browse the grocery store, you choose new items. It doesn't bite back. You don't worry about what it's doing to your child's hormones or brain development. That's what the FDA is there for...right? Right? RIGHT???

I've learned that experts have tunnel vision. Not only do they have tunnel vision, but it's rewarded with money. And they want to stay in the dark as desperately as I do.

I've learned that women are slightly more prone to food intolerance...or maybe they just admit it more readily than men do.

And I've learned how easy, and satisfying, it is to live outside the box.

Life with a corn allergy has opened my eyes to a lot of things in this world. I knew that the food supply was less than perfect, and that the Standard American Diet really was a bit SAD. However, I thought it was "normal". There were government agencies in place to take care of us.

In the end, it really couldn't be that bad.

But now...Well, now I wonder. There's corn in this, and that, and yes, even that. Eggs, still in the shell, aren't even safe if they've been washed in a corny solution or if the chickens they came from were fed xanthophylls. And yet the FAAN still says that they are not advocating for the corn allergic community because the FDA does not consider corn a true allergen.

My daughter's migraines have introduced me to the world of petrochemicals...an area I'd like to keep my head in the sand regarding. The doctors caution that there aren't a lot of studies to back up what they, and I, are seeing. But there's no doubt that blue dye makes my daughter pale, pained and nausous. And there's no doubt in my mind that artificial coloring may play a part in the increased 4 A epidemics.

Anyways, while I've always known there were problems in the world, now I'm forced to do something about them. And I thought I'd make a list for those who have it in the back of their mind that they'd like to do the ubiquitous something, they just feel too overwhelmed to know where to start.

Of course the most important step is to simply make a choice. Where are your values? What do you want to change? The second is to look at where your money goes.

The fact of the matter is, if you agree that there is too much corn in our food supply, the only way that it's going to change is if you stop buying corn. You don't have to do it like I do. You don't have to be corn Kosher. But you can choose the bread without high fructose corn syrup, or corn starch, or cornmeal.

Avoiding petrochemicals is even easier, and you won't run into a corn growers association's PSA trying to convince you that petrochemicals are not only safe, but actually nourishing. Most people will be on your side. They either find food colorings to be harmless but probably not good, or they think they're a necessary evil. Something you can't do anything about.

But we can do something. In Europe, parents refused to buy food for their kids that had been colored with questionable additives. And guess what? Companies like Walmart and Kraft did something. They took the additives out of the food.

If they can do it for European kids, they can do it for Americans.
If they can do it for petrochemicals, they can do it for corn. (It might take a little bit more work, and a bit more economic adjustment, though. There's a dietary revolution coming, whether we like it or not. For our grandparents, the revolution took society into the world of "clean" processed, industrialized canned food. For our children or grandchildren, it will be a return to gardening and local farming. There's just no way that our world can survive if we continue this lopsided industrial farming approach.)

So, choose the better brand even when it costs a small amount more. And write to your favorite brands to tell them why you did or didn't choose to buy them. They will probably respond with a form letter and coupons (Which is a good enough reason to write, sometimes) but if they get enough feedback asking for change, they'll change.

There you go. Two semi painless steps. Buy what you, the consumer, want to have available. Merchandisers follow Darwin's laws...Use it (buy it) or lose it.

What do I think is the most important goal?
Full disclosure. I want to know what's in everything I put in my body, from farm fresh produce to the excipients used in blood pressure medication. Chemical breakdowns are nice, but they don't tell me sources and they don't give the American people the info they need to make informed choices. In a world where we can't logistically each farm our own land, slaughter our own meats, and grind our own grain, I don't think knowing whats in the products we buy is too much to ask.

Why is it so hard?

I frequent several online communities or bulletin boards specializing in dietary restrictions of some sort. Recently, there have been a few friendly polls asking what we miss the most, what we wish we'd known, how things would have been easier. It left me thinking about the different attitudes portrayed.

Some people are given a diagnosis of food allergies, and they embrace the new lifestyle. They actively seek out alternatives and find themselves determined to meet and beat the challenge. Others fight the change with everything they have, determined to go out kicking. They settle for a few symptoms, and appear angry that doctors can't "cure" this named malady. And others curl up in a closet, limiting their diet to the few foods they'd previously enjoyed that remain free of their allergens. Most fall between the extremes, and many bandy about, depending on their level of grief, acceptance and research.

I couldn't help but wonder what makes the transition so hard, so frightening for some. I look back on my journey and see that I've hit various levels of extreme. I've also thrown caution to the wind, and suffered the cosequences. I've fought, and cried, and been accused of eating disorders until the mere mention of one makes my hackles raise. I've embraced, and experimented, and tried whole heartedly to overcome the obstacles growing in front of me.

But somewhere along the way, I stopped trusting food. It became quite an enemy, something that I fear rather than relish. I can remember walking the aisles of a grocery store and being tempted by new treats and delicacies. I can remember enjoying taste tests and can even empathize with those who claim to "eat their way through Costco" on a sunday afternoon. But no longer. Now, I find a new brand of chocolate chips, and instead of trying them out for a special treat, I save them until there's nothing going on for a few days and nothing urgent for at least a week, just in case they bite back.

I yearn for broccoli, or mayo or salad dressing. I long for a simple quick fix meal that is new, unique. Forget the candy and the baked goods, I want a casserole!

But I don't trust it.

I think that's the hardest thing, the thing I miss the most. I don't trust food anymore. It's supposed to nourish, to sustain us. No one ever said it could bite back, destroy the lining of our small intestines, sprinkle our body with itchy red spots and wreak havoc with our digestive track. Not if you treat it with respect, anyways. Food is supposed to enhance the social experience, drawing people together in a shared caloric pleasure. What you see is supposed to be what you eat, not a variety of re-designed, corn derived pseudo-foods that are supposed to enhance the experience. Fun colors and flavors are supposed to be innocuous, but all those rainbow fish and brilliant gummies I used to treat the kids with put my child in bed, pale, sweating and miserable. And me? I think I'm broken. While I desire the quick, the fast, the easy...while I mourn for the past, I wouldn't trust it if it were offered.

Mother nature, or the FDA, broke that trust a long time ago. And it's a hard road back, filled with the painful reminder of indigestion and more questions than answers. With intolerances, there are no firm lines. And there is no FAAN or other organized group at your back, offering knowledge, studies and expertise. Just the knowledge that you aren't alone, and the grass root support of those who are muddling through alongside of you, just as lost but determined as you are.

Happy Mother's Day

My mother's day weekend didn't get off to much of a start.

Yesterday morning the kids woke me with a battle about whether or not I should open gifts on Saturday. There was a lot of high pitched screaming as one or the other attempted to protect their secrets from being spilled, thankfully it was resolved before I decided to simply call off the entire holiday.
Then came the news that a beloved childhood pet passed on late Friday night.
We agreed to stay in and mope.

However, this morning managed to pull into a lovely start. My oldest fondly recalls making soap together when she was little, and dh found someone to help her make (hopefully) safe soap for me. My youngest made a lovely coupon book, and instead of filling it with things like "good for one night free from washing dishes" she filled it with wishes that make me grin. I thought I'd share a few here. :-)

*I love my Mother. There's (almost) no one who loves you more than me.
*I'll clean the Earth for you.
* I wish you would lose all your allergies. [This one made me cry]
*I wish I could plant flowers for you and make them grow overnight.

I'll treasure it always.

Getting Greener...

It's Earth Day. (Or was when I first started and forgot to post this entry)

The sun is shining (Thankfully not quite so hot as it was yesterday, or the day before); the garden is growing, and Bumblebee chose today to debut her brand new stainless steel bottle tote.

It's a work in progress. She says it hurt her shoulder, so the next proto-type will include a shoulder pad. We'll get there, and we'll grow greener doing it.

I'm still a bit skeptical about our garden. Although I'm elated to see green sprouts popping out of the ground, stretching their leaves to the sky, I have to remind myself that it's only taken them twice the germination time cited on the seed package.

Is it the weather, which clouded over and rained for a week as soon as we gently tucked them in the warm, dark earth? Is it the seeds, which were purchased on sale from another season's guaranteed to grow crop (seeds are seeds, and they ought to last if they didn't get wet or otherwise damaged) ? Or is my brown thumb rearing it's ugly head?

Maybe it's just stress...since the raised bed does not get a LOT of sun. None of the yard does.

However, the few nasturtiums that returned from last year seem happy, and I have a stunted looking rose that bolted into something resembling a tree in it's quest for light, and the fairy house looks pretty wild in the back nook. The yard is still, well, not tidy or anywhere resembling something that can be shown off. But it's green. And it gets us outdoors and excited.

(until Penguin sees a snail and runs for cover, anyways.)

Maybe we're all crazy...

I'm seeing a disturbing trend on message boards I frequent.

It's laughed about on the Avoiding Corn forum. It's subtly hinted at on Celiac listserves. It's vented over in special diet groups. And it's pondered, rhetorically, in various self-help corners of the world wide web.

"Maybe I'm wrong..."

"I must be crazy..."

"Except, that what I know just doesn't correlate to what I see..." (The words are different, but the gist is the same)

Why do we so easily doubt ourselves when what we witness just doesn't fit in with the world as we believe (or want) it to be?

Parents watch their children melt down after neon-colored cupcakes, candy and medicine...but tell themselves that it has to be...um, the excitement. Right? It's not the additives. Except (They anonymously vent inner doubts online) the child only really loses it when they have artificial coloring. And, well, it sounds crazy...but they've read a few things that made them wonder...It's probably a coincidence, right?

Adults note that certain foods cause bloating, and abdominal discomfort...digestive distress. But it isn't an allergy. It isn't an intolerance...it's, well, it's...um...something else.

People with intolerances start noting reactions and trace them to the "impossible" (like a banana) and tell themselves that they're crazy. Only to learn that their cereal is being recalled for contamination, or the bananas are sprayed with corn ethanol, or that their favorite potato chips now have a healthier oil (that just doesn't agree with that particular consumer.)

People who have Celiac and don't respond quickly to the diet are encouraged to wait it out, their questions about whether it could be something MORE are brushed aside like annoying spiderwebs. But, like those spiderwebs, they return until the problem is dealt with. Or, we learn to deal with symptoms and leave the doctor alone.

Concerned parents recite generic symptoms that doctors brush off, knowing that "chronic" isn't often serious. They play statistics, and statistically...parents stop complaining either because things DO get better or, more likely, they become normal. The warnings on the package say to consult a doctor if the condition doesn't go away. And most doctors run a few labs, shrug, and call it normal. Eventually, it is. Or abnormal becomes normal and we move on, with the suspicion that we're missing a piece of the puzzle.

At what point do we decide that Drs know more about everything than us?

As I tell my daughter, doctors know more about the human body and how to fix it than we do. However...we know our bodies. And it's our job to take care of them, and report problems to the doctor so that he can look for answers.

Unfortunately, it seems that many (if not most) doctors are so bent on brushing off their patients they forget that they can learn from them. Doctors DON'T know it all. They're human. Their skill is found in being a tool, only one tool that we the consumer utilize in our quest for health.

Sometimes, eventually some come back and say that not only were they NOT crazy...they have living, breathing proof (in a healthier body) accompanied by black and white test results that showed they had a physical cause for the "stress" or "over anxiety" (about their kids) all along.

Why did they waste time doubting themselves?

Just as actors are a tool in the art of entertainment, and editors are a tool in the world of publishing; the doctor is one of many tools we the consumer should use in our quest for health.

We need to educate ourselves about the food supply, about our medications and nutritional supplements, our water. We need to question doctors and other authority figures. Why are we taking this course of action? Why are my observances invalid? What makes these concerns invalid? And how many others have you successfully treated? Are any still your patient? (Okay, so I'm not quite brave enough to ask these questions. But they need to be asked.)

We need to question food companies, and pharmaceutical companies. We need to hold them responsible for the truth...and accountable for lies (but not necessarily honest mistakes). And we need to learn to trust ourselves. Another trait that has been victimized from society...sheep are rewarded, the inquisitive left behind or punished. We want to be normal. But I don't think there is a normal anymore.

Maybe there never was.

March comes into our household like a lion...filled with school projects, girl scout cookies (that half of us can't eat), a bunch of birthday parties interspersed with "Ugh, how can I have the flu again?!?" and of course, the promise of spring.

This year my husband is dutifully clearing our tiny yard. He was motivated by the prospect of Penguin's birthday party, a gaggle of tween girls giggling, running and generally wreaking havoc frightened him.

Luckily the party went off without a hitch (well, okay, unless you count me waking up with Penguin's flu two days beforehand.) Thankfully, my parents stepped in to take the girls to a "can't miss" event the day before; and with the support of my diligent husband and whining kids, the rest of the house was orderly, the table set, treasure hunt clues hidden and a gluten free cake baked and iced well before anyone arrived. They all asked for seconds, and even thirds, on the cake so it must not have come out too "gluten free".

Anyways...back to my musings...

The garden. Well; the wannabee garden. Our funky shaped yard that has spots of grass, areas of dirt, and a large square of cement. We weed, mow, and rearrange as we endeavor to determine once and for all WHERE the sun hits the longest. That's where vegetables have the best chance of survival, we think. And forget aesthetics. We want produce. We don't even want massive amounts of produce. Just a few simple plants.
Successful plants.

I'm going to turn this brown thumb of mine green. (Which may take an awful lot of determination, given the dead cactus on my windowsill.) Said dead cactus was removed for the birthday party. Which was more successful than any of my gardening attempts to date have been.

I want to do it for me. Sure, I want to cut the grocery bill a bit. And I love the idea of walking out into the garden and harvesting dinner. (Although I worry about having the energy to prepare it after harvesting.) I want to lower our impact on the environment by reducing our trips to the store. And I want...I want the kids to know where food comes from. I want them to get their hands dirty, and stop panicking when they see a bug, and to realize the full circle of life. I want them to experience the satisfaction of growing what's on their plate.

And I'm hopeful that Ms. B (whom I will soon dub BumbleB or HoneyB) will be more willing to eat a variety of foods if she actually grows them. (What can I say, I'm an optimist)

But most of all, I want to walk outside and see plants growing, real plants, real green leaves that we're nourishing. The sight of life will do more for all of our souls than the food itself, I think.

We've gardened before. A few years ago, we tightened our belts and spent our tax refund on all sorts of garden stuff. We were determined to make it work, and it almost did.

But just as the seeds were poking out of the ground, and the sunflowers were turning their heads to the sun, there was a knock on the door. To make a long story short, the garden didn't survive (nor did many of the tools) and it soured us on even trying again for a very long time.

However, we have a new landlord now, and a host of new allergies along with a bit more energy than we had a few years ago. Our confidence has had a chance to recover, and youngest does have the start of a green thumb that I want to cultivate.

So maybe...just maybe...we'll try...I think we'll start with sweet potatoes...

Depression, perhaps?

Although I've had this blog for some time, I don't think I've ever formally defined it's purpose.
I'm not sure anyone formally defines their blogs, so hopefully that isn't a problem!

Is it here to detail highlights of my life? To inform others of the trials of allergy free living? Perhaps it's an attempt to connect and say "you aren't alone" to strangers who are in their own "Can it really be just stress?" quandry. Or maybe it's a bit of everything. I know there are a few friends who follow faithfully, a few family members who drop by occassionally, and fellow allergy sufferers who pop by just to nod and agree...or shake their heads and say to themselves that they're glad they aren't THAT bad off. :P

I think today's post is directed at the latter.

I've been dealing with some sort of reaction for nearly a month now. I got a good dose of...something...just around Thanksgiving, vomiting and all that good stuff. It hit at a particularly poignant moment since I was dreading leaving the house and then conveniently ill.
Maybe it was stress?
But why hasn't it gone away? And why is it getting worse at moments when I want, very much, for it to get better?

I've found myself wondering which comes first, the reaction or depression. Because while it's much harder to deal with a reaction while depressed, the fact is that it's pretty depressing to feel like there's a shattered disco ball being used like a pin-ball machine in your abdomen, especially when the muscles are also feeling very sore and bruised. And then the chills set in, ironically I feel like it's a hundred degrees in here while my teeth are chattering loudly enough to accompany the CD player and I'm sweating. Ick.

The only difference between now and the days before I'd identified triggers are that I harbor hope. There's hope that I'll track the reaction down. I know what normal is, sort of. At least...I know this isn't it. And it isn't a constant tide of pain vs discomfort. There's bits of normalcy in there. There never used to be.

I'm hopeful, but I'm scared too. I don't want to deal with this on a regular basis. I don't like not knowing when it's going to hit. Whenever it DOES hit I get so skittish. I shun company, I hide out at home. I want to ignore the phone and the door and the call of the grocery store (It's not like I'm that hungry, after all.) I used to get the stomach flu, and it was a distant memory within the week.

Now, it's long and drawn out and there's very unnecessary weight loss involved...especially when it ISN'T the flu.

To be honest, the discomfort and embarrassing nature of this malady isn't the only thing I'm afraid of. I know I ought to slip into the doctor's office, recite my list of complaints along with their severity and wait for prognosis. And I know that it's not serious...I'm not even concerned that it might be serious. What scares me is the thought that there's nothing more to do.

I know I don't have something scary like Cancer. I'm lucky, very lucky! I also don't have something scary but treatable like diabetes. Again...I'm lucky. I can eat chocolate now and then! But the mystery digestive ailment that responds violently to comfort drugs and pops up mysteriously; tracked to triggers such as minute amounts of corn in the new tube of my usual toothpaste or helping the kids to decorate "real" gingerbread houses is getting to me. I wish I had something to say other than "I'm just not feeling well today," I feel so whiny. And I'm whining about whining which simply makes it worse!

At any rate, I go back to my checklist. Foods haven't changed drastically, or even that subtly. All the same ingredients, all the same brands, all the same labels (even on eggs). Maybe it isn't food. I'm more prone to reactions this time of year, usually tracked to a trigger but maybe I'm wrong? Maybe I'm crazy? (Wait, blind tests have proven there's SOMETHING physical occurring beyond the state of my psyche)

What about stress?
It's my official diagnosis, one I've been given countless times. Maybe I'm depressed, something I've considered as well.
The thing is, I'm more mad at my body than I am "stressed". And I feel too happy to really be "depressed", if that makes sense. I may not feel like going to a downtown museum and walking through the crowds of the Christmas displays but lying down and listening to my kids play with their nativity set makes me grin. And I enjoy the Christmas displays when there aren't elbows in my ribs and strangers feet tripping me. When I awaken beside a bedtime invader ("It's cold in my room!") I just lay and savor the weight of her body and the sound of her breathing. Candles burning in the menorah filled me with peace. I missed reading together when a child fell asleep before her bedtime book.

Would I feel that way if I were depressed?
The landlord stopped by unexpectedly, and caught me with the living room a mess and my baking unfinished. (At least the kids were dressed...) And I laughed, even at the gentle critique (Yes...my yard's a disaster, it's worse than the living room. It's cold out there for cleaning, though!). If stress were the issue, wouldn't that have tied my stomach in knots? Or wouldn't I lose my calm when I discover that there are beads, scissors and a flurry of paper snowflake-makings filling my now-recently vacuumed living room?

Okay, so I did think "why even bother"? But then the snowflakes made me smile. And if I were depressed, I wouldn't keep re-cleaning...would I?

I'm starting to wonder how many other allergy/digestive sufferers go through this process during a reaction. If you struggle with depression in conjunction with a reaction (but don't know if it's really depression) let me know I'm not alone! You can let me know if I'm crazy too...everyone else does :P And if you know of a good way to get through the emotional aspects of a reaction cycle, post that, too. It's the most frustrating part. Because sometimes it leads to not caring anymore. Whats the point if its not going to permanently cure me?

I know that eventually I'll be fine again. I know that it isn't just stress. I also know that it stresses me out, and that stress exacerbates things...so maybe it is stress to a degree. At any rate, I have to get better. I want to enjoy playing with the kids. We've got playgrounds to explore, and games to play, and recipes to adapt. Not to mention holidays to celebrate...