Sunday, March 28, 2010

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 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. 

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