Friday, November 11, 2016

I've had a long, hard journey to get where I am now.  And I know there is a long journey left to come.  There is comfort in the fact that I'm not in it for a destination.  I'm no longer sure where, exactly, my journey intends to take me.  But I'm grateful for the experience along the way.

On this journey, I've met many individuals who are following a similar path.  They may have set out with different intentions, or had a different destination in mind than I did, but nonetheless we find ourselves following a somewhat similar path of learning and dietary adaptions and discoveries.  Symptoms overlap, research correlates to other research, experiences and diet may differ somewhat but the overall journey remains very similar.  

Dietary changes are hard.  Even harder is the learning process, learning not just to rethink what you eat but to reevaluate the entire learning process that got you to this point in life.  What you eat isn't something to take for granted.  There are so many variables in our diet, from pesticides to genetically modified organisms to preservatives to artificial flavors and colors.  Some are likely perfectly safe in small amounts, but our diets contain so many small amounts that the amount we ingest is no longer negligible.  Others are safe for some but may trigger problems for others.  And while there is limited research that helps us begin to understand what's going on, the far reaching implications are still hard to comprehend.  

Hey, I've been at this for over a decade and I'm still struggling to grasp the enormity of it all.  

What I haven't talked about in a long time is the very real danger of over compensating.  
I recently found myself engaged in conversation with another journey-taker.  Her daughter has been very sick, finally able to participate in life again after being bedridden for several months.  After giving up on western medecine, they discovered some food intolerances and an allergy to pesticides.  The trouble comes in over compensation.  While I have no doubt that the food issues are making a big difference, they are still looking for things to eliminate.  
The trouble is, you can't stop eating.  And a very limited diet is no help to anyone.  I know, I've been there.  It's so easy to do, especially as a parent who has kids that depend on me; and limited support (due solely to a limited understanding in how chronic digestive issues work rather than lack of care) I am constantly battling the temptation to stop eating.  So I get it.  
But I listened to the hoops she has jumped through, and watched her bristle as I gently suggested some less-herculean efforts that might yield a similar response.  So I bit my tongue as she described the emotional isolation and their solution (which sounds just as nasty as the original symptoms, involving a variety of detoxifying herbs and recovery systems after indulging in forbidden foods.)  And then she started listing more diets that they are slowly adding to the original, proudly increasing their limitations while increasing supplements to make up for what is being removed...
I had to say something.  And I had to share.  
Just because food is a trigger, dos NOT mean it is inherently evil.  
Gluten is bad for me.  What it does to one kid is flat out evil.  But in itself, it's just a grain.  

I don't believe that there is one diet that works for everyone.  I don't believe that natural foods that have been used by native cultures for generations are inherently bad for everyone.  And I believe that this truth is universal.  Different people have different needs, and while various diets work well for broad spectrums of individuals, it's only because their individual needs happen to overlap.  

That's right.  While I may think that the American diet has a surplus of wheat grains in it, I don't believe we should ban wheat.  And while I am concerned about any monocrop (especially corn); I also don't think we should ban it.  Any monocrop is dangerous.  And there are people who can't tolerate wheat, or rice, but might do okay with corn.  Everything in moderation.  

A healthy diet is a varied diet.  If you are still having symptoms after eliminating one food, please, please, please don't go overboard by eliminating every other food you think might possibly be suspect.  Listening to this one particular case, I couldn't help but wonder if they'd tried a moderate route.  Just give up the gluten and stick to organics for 6 months.  6 months is a very long time in the life of a 10 year old.  But it takes a very long time to heal from malnutrition caused by food intolerance.  It takes a very long time to heal both physically and emotionally from long term digestive problems.

I understand the desire, the desperate desire that borders on need, to feel healthy.  But total elimination for life is not a good answer.  Elimination diets work by eliminating the suspect foods, and then slowly reintroducing them while watching for symptoms.  It's a challenge as a parent because a) you want to be available and dependable to kids and b) you don't want your kids to suffer. Life goes on, and when kids are young it goes very, very fast.  There isn't always a tomorrow because by tomorrow, your kids may have moved on.  But patience is still key.  Give the gluten free (or corn free, or dairy free, or all organic) diet a chance to work before choosing another restriction to add to that one.  Consider carefully re-introducing eliminated foods if you don't get the results you were looking for.  There is no one size fits all diet.  There is no magic cure.  It took time to get this miserable, it's going to take time to heal and relearn what "normal" looks like.

Most of all, it takes a long time to rebuild trust with food.  It's something that is supposed to nourish us, but when it bites back, it's hard to risk eating again.  It's still essential.  

Tuesday, November 08, 2016

Recently, an author I follow posted a lovely infographic (which I don't know how to snip and share appropriately) about how small amounts of allergen can be fatal.  She mentioned living in fear of something so small taking your life.

The thing is, I don't want to live in fear.  Knowledge is power, and fear is sort of an anti-power.  It's a weapon used against the masses, and it's getting out of hand.

Yes, I have allergies.  And yes, a very small amount of allergen can make me miserable.  And yes, I've had breathing issues and I've been told anaphylaxis may be an issue.  But does that mean I have to live in fear?

I could.  I could bury myself in my room, and never leave.  I could stop eating anything that didn't come from my garden.  I could let it escalate, and grow, until I was paralyzed.  It would be an easy thing to do.

But you know what I do instead, even though it's hard?  I go to the store, week after week, and trust companies not to change ingredients without telling me.  I visit people's houses, sometimes in a mask, and hoping they don't react poorly.  Trusting them not to have just popped popcorn or used cornstarch or overused cleaning supplies.  Eating, in general, is hard.

But I do it.  A lot of people I know do the same thing.  Throwing themselves out there, trusting food.  Sometimes successfully, sometimes not.  The more "nots" that we have, the harder it gets but we persevere.

Because what else are you going to do?  You need calories, and growing them all ourselves isn't an option.  It seems silly to those who have never had reason to mistrust food.  But after being burned repeatedly, it takes someone strong to keep going out there and trying.  That's why we need transparency in labeling.  That's why we need clear food labels that tell us what we're buying, how it was grown, and clear answers about packaging (Which can be dusted with cornstarch, for those not in the know).

We can't eliminate all allergens.  But we can make all allergens easier to live with.  

Wednesday, November 02, 2016

More than a label

We like labels.
Labels help us to understand individuals.  They help us to understand ourselves, to get the help we need and are instrumental in getting the accommodations needed for school or life.  Labels can be a good thing, but we often go a step too far.
Labels are only post it notes, they help us to understand our differences but they don't, and should never be expected to, define us.
I experience food allergies and chronic digestive symptoms.  I am not my symptoms, nor my restrictions.
However, I find that I feel like I am of less value to society because of my unique situation.  And, as I talk to others in similar situations, I discover that they also feel inferior due to their restrictions.  Inexplicably, we also at times feel like martyrs because despite our symptoms life must go on.  So we shower, take whatever symptom limiting medication we can tolerate, and put on our masks.  Public faces, with forced smiles (carefully practiced to appear natural), and borrowed energy.  We box up our symptoms the best that we can and pretend to be normal.
Until we can't.
And then we need to own up to our symptoms, our labels.  And then we become filed away under "potential liability," or "weird" or "crazy".
We can't access the world in the same way as others.  And our labels can either enable or entrap us.  Ironic isn't it?

Tuesday, September 13, 2016

Food Irony

Tonight I was preparing one of our favorite, or at least most frequent, meals.  Essentially I take whatever leftovers we have that sound good together, add some veggies, heat them up and scramble in a few eggs.  If Penguin is not planning on eating with us, I melt in a bit of cheese as well.

It's fast, easy, and also serves as comfort food.  It turns leftovers into a second serving (and there have been days where I make pasta or rice simply because I want to turn it into second servings)  As providence would have it, we've nicknamed this meal "hash" since it's pretty much a hash up of all the still edible leftovers and we never really get the same meal twice.

Not long ago, I was talking to my mom when I mentioned using leftovers again like fried rice.  Before I could get too far, she made a disgusted sound and said it reminded her too much of what her mom used to do.  Which was throw leftovers into a frying pan and scramble in an egg or two and call it hash.

My mom hated that meal when she was growing up.  And to be fair, I've seen some of the recipe booklets from the 50's and I swear, people back then had some very questionable tastes (Like lemon jello with chicken salad in it as a delicacy)  And my given diet is drastically different than theirs, namely that mine tends towards veggies and theirs would have been more meat and potato-ey.  So, it's quite possible that her version of hash and mine vary in appeal.  It's also possible that her leftovers were less than appealing to a young child to begin with; making the leftovers even less so.

Then again, maybe my version of hash will go down in the history books as unappealing goop.

At any rate, I love that my experimenting led me to create a meal that my mom never once considered serving because she found it so unappetizing as a kid.  And that I nicknamed it the same thing my grandmother named hers.  I've racked my brain and can't recall having hash; unless it was hash browns.  I do recall that my grandfather occasionally got a different meal than my brother and I and it may have been hash. But I never got a good look at it, and accepted that it was for grown ups.

Is my meal palatable?  Well, Mr Violets hasn't complained.  He's even offered to make rice so we could turn it into hash...So it can't be too bad.  The kids, however, reserve judgement.

Like most kids, they'd rather have pizza.  Even if it is gluten free and dairy free from a box.

Tuesday, September 06, 2016

Invisible Disabilities

It's so easy to judge.  In fact, sometimes it's an important facet of survival.  Our instincts about people and situations have been honed over generations to help keep us alive.  Our guts tell us when to stay and when to run.  They aren't always *right* instincts, but they are there for a purpose.
Unfortunately, this innate ability to judge can come with a high cost.  We stop thinking, cease to remind ourselves that behind a facade is a human being.  Pain isn't always written on their face, the potential of pain and suffering never is.  But it's still there.
We've come a long ways since the days of witch hunts, where individuals with various physical limitations were cast out as damaged by the devil or "marked" by witches.  We understand genetics and at least some medical conditions and agree that there are currently limits to medical science.  We see the person inside the body impeded by a wheelchair, put up signs in braille to help blind people find their dr's office in a large building, add ramps to buildings and paint curbs blue to make the world more accessible to those with limitations.
And yet we continue to judge.
We go on social media and rant about special snowflakes, we question the need for service animals for diabetics and epileptics and PTSD survivors.  We critique slow movers, and slow learners, and motorized scooter users.  We fail to see the person inside the every day individuals who are struggling.
We look at smiles and automatically, we see healthy individuals.  We don't know what's going on inside, but we assume that they have resources.  Can walk to the corner, volunteer an hour at the PTA fundraiser, make a few phone calls.  We assume that their resistance to any of these things is purely personal.
And sometimes it is.
But sometimes, there are deeper set objections.
People with food allergies may be reluctant to participate in food related affairs.  Maybe that's reasonable and maybe it's not, but they are the ones managing their symptoms and living with the consequences.
People with digestive disorders have unique needs and may be unreliable.
People with chronic pain may not be able to stand for 20 minutes at a time, or drive the carpool at the last minute, or might need to cancel plans so they can take a stronger pain killer, or just can't participate because their personal limitations have adjusted.
Some people may need help lifting groceries or children, or struggle to push a cart but otherwise look perfectly healthy.
However, we miss these problems because when people with limitations take care of themselves, they often appear "normal".

That, I think, may be the problem.  In our society, we have no problem helping those who are suffering.  What we struggle with is understanding that many of our accommodations and support systems are in place to prevent as much suffering as possible.  So, no, the lady with a rod in her back doesn't look like she's in constant agony.  But if she were to lean over and pull the cans of soup out of the bottom of her cart, she would be.
The person with dietary restrictions isn't laid up in bed every day, but only because they are managing their diet.  They aren't trying to spoil donut day.

When someone needs accommodations to function normally and appear "normal"; they have invisible disabilities.  It doesn't mean that they are any less of a person, just that they need to be a stronger self advocate.  It might also mean that they don't know exactly what they need to be successful, they only know some of the potential pitfalls.

We need to learn to accept these limitations that we don't see.  Even as someone struggling with "invisible disabilities" raising kids with the same issues, I'm struck by the ever present conundrum:  Everyone has issues.  We're no one special.  Except, we are still people.  We aren't trying to ask a lot to be included (maybe permission to bring our own food)  We still have a lot to contribute to society.  But only if we can figure out how to navigate our way despite our limitations.

Now, when I see someone roll their eyes about a "lazy" or "irresponsible" individual, I wonder if there is something else going on.  And I try to accept it.
Building a better world is the end goal for all of us, right?

Sunday, September 04, 2016

Oversharing

Food allergies are never easy.  Adults and children alike struggle with how to navigate daily life; along with how much to share, how much to hide, and how much risk to take.
It's hard at any age.  
Kids can blame their parents.  But adults are left to justify their reactions, their risk management plans, their ongoing learning curve.  And in that justification, we sometimes over explain, over justify, over share.  It's not meant to be self centered.  It's not a plea for attention.  But sometimes, outsiders think it is.  

I've noticed that I'm not the only one who does this, and I'm pretty sure that others are saying the same thing I am.  Having a condition that affects my ability to eat freely makes me feel like I'm less.  Less valuable, less interesting, less desirable.  Intellectually, I know that my thoughts and insight are just as valuable as someone else's, but I also know that it's easier to connect with someone you understand.  And it's hard to bond with someone who can't share your or a cup of coffee with you.  It's awkward to go out to eat with someone who doesn't eat.  And when you can't even commiserate over calorie consumption and temptation, it's easier to just walk away.  

There was an episode of Charles in Charge (Am I the only one who watched that show?) where Charles and his girlfriend come home from an outing, arguing because she ordered salad off the menu and everyone else was having ice cream.  It made others feel bad about their choice to splurge while she sat there virtuously eating diet food.  

I think it's sometimes the same way with food allergies.  I don't indulge in pizza because I don't find bloating and vomiting to be indulgent.  But I recognize that the consequences would be different for someone else.  And I know that pizza tastes good.  When I can afford it, I don't hesitate to treat my kids to box of gluten free, dairy free, pizzeria made pizza.  (Yes, there is such a thing!  And I'm told it tastes better than the frozen version.)  

I don't drink coffee because it causes pain and discomfort which makes me less productive, rather than giving me that caffeine rush that adds to someone else's productivity.  But I can appreciate the desire for a treat that makes one feel more energetic, and fortifies you for the day.  If I could, I'd drink it; and I'd experiment with additions until I found the perfect blend.  But I can't.  I don't even dwell on it (outside of this blog post, that is)

But when I'm offered some, the whole scenario sometimes starts playing through my head.  I'd love some.  I can't.  Maybe this time...no.  Brain reminds me of pain, discomfort, I'll spare you the details.  I hesitantly say, "I wish I could..." and then the justifying begins.  I'm not anorexic.  That's not why I'm saying no.  Really.  I have these food allergies.  And I'm not just being paranoid.  Or, if I am, it's just because I've been burned so many times before.  Really.

And the more I get that look...the look of disbelief, the "uh, huh, sure", the twist of the mouth, the chewing of the lips followed by a polite smile, the more I want to keep talking and say things like, "Let me explain what I'm dealing with..."

In other words, I overshare.  It's pathetic, really.  I *think/hope* that I'm getting better.  I recognize it coming on and bite my tongue.  I see it in others and try not to cringe outwardly; I try to listen and actively respond.  I see through the oversharing to that tender center, the "please don't hate me, don't just walk away, I really wish..."  But I know others don't know what's behind the oversharing.  I've even heard them discussing it later, that man or woman who went on and on...Well.  That's what inspired this blog post.

So here it is.  In my personal, non professional, layperson's opinion, here is what someone is saying when they start oversharing about a medical condition you don't really care about:

"Don't judge me.  I'm doing the best I can.  I don't know how exactly to deal with what's wrong, but I'm trying to understand it.  Sometimes talking it through helps me deal.  Sometimes talking makes me feel less crazy, even if it makes me look crazier.  I feel vulnerable.  I feel judged.  I feel isolated and incompetent" (though why having to turn down a piece of candy or a cup of coffee might make me feel incompetent is beyond me.  It's still true.  I've found myself turning food down and then thinking that I shouldn't be there, someone else who can share and bond over junk food is somehow more qualified to be involved than I am.  I mean, I can't even eat normally...It doesn't make sense but there you have it.  Then you add in wearing a mask if popcorn or cornstarch is involved and I really feel out of place.)

Oversharing is a way of saying "Like me anyways.  I'm not really weird."

Several years in, I recognize this and am striving to embrace the weird.  Food allergies and the struggle to identify them have made me much more conscious about so many things.  Unfortunately, I have not grown more eloquent, and my awareness of multiple viewpoints only worsen my communication skills.  But I do try to embrace the weird and recognize that others simply aren't here.

And I wanted to share.  In case you, too, are struggling with oversharing, or know someone who is.  

Saturday, June 04, 2016

The Friends Zone: Allergy style

Who hasn't heard of the Friend Zone?  I'm not talking about Ross and Rachel here, the Friend Zone is the place in a relationship where both parties are comfortable, it's that point in time when you don't really move forward because you have reached a defining level in your relationship.  Some people feel it's inescapable.

Today, this struck me as the perfect metaphor for food allergies, and even chronic symptoms.  I've reached the Friend Zone.  In allergy-speak, this isn't a terrible thing.  It means that I'm comfortable managing my diet around my needs.  I don't even stress about food events, or beg for a carefully footnoted ingredient list.  I already know that answer; and it's no.  No food prepared outside of my kitchen at this time.

But it's also a danger zone.  I'm taken aback by food offers from new friends and acquaintances.  It means that I have my safe food list, my comfort foods, and I'm not constantly trying to expand.  In short, it puts me in a rut.  Same old foods, prepared very similarly.

Likewise, when it comes to symptoms, there is a Friends Zone that isn't so great.  Kind of like an annoying neighbor who thinks you're best friends and you want to be polite to.  Or are forced to put up with.  They become so ingrained in our lives that we take them for granted and stop trying to change things.  We accept them as an inevitable negative part of life.

Recently, I was talking to a woman who has a teenage son with food allergies.  He's in a double friends zone; choosing to put up with symptoms and assuming they won't get worse.  I hope, for his sake, that they won't.  But I also couldn't help but wonder if the problem could be too much Zone.  A boring diet, no longer pushing to adjust and expand, coupled by an acceptance that this is just the zone.  What we know, what we grow used to.

As someone with food allergies, I don't want to be stuck in a zone.  Maybe I'll choose it now and then, but I don't want to be stuck with symptoms I can't explain (they're either related to hidden allergens, or caused by damage done by prolonged GI reactions).  I don't want to presume that my diet must be boring and bland, while "normal" people enjoy "normal" diets full of spice and pizzaz.

So, while I fully intend to adjust my diet this summer in search of answers, I've also decided to yank myself out of the Friends Zone.  Insist on spicing it up.  Add a little pizzaz.

If nothing else, I'm gonna sip my ginger water from a champagne flute once in awhile.  It feels inspirational.