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 that...it'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.

4 comments:

Deborah Schlegel said...

I've been thinking about these same things lately. As long as I can stay away from medical places/people I'm fine! Maybe our corn free diet and the way it makes us return to "real" food will keep us from having to have all the medical interventions I see those around me needing as they get older. I do know that the last 1 1/2 years since my diagnosis have been the healthiest I can ever remember being!

Deborah Schlegel said...

I've been thinking about the same things lately. As long as I stay away from medical places/people, I'm fine! Maybe our corn free diet and the way we have to return to eating "real" food will keep us from needing all the medical interventions I see those around me needing as they get older. I do know that the last 1 1/2 years since my diagnosis have been the healthiest I ever remember being!

kc said...

You said it so well. The simple solution to our problems with the medical profession could be solved if doctors were willing to accept that there are some things they don't know yet. I don't even begrudge the fact that they don't know (I only know because my life depends on it), but I do take issue when they won't listen. I've only been to one doctor in my life that didn't try to challenge me on my symptoms or deny my reactions and took everything I said as a clue he needed to do his job. It seems to me that listening should be the first and most important part of being a doctor and the majority of them cannot manage it.

Erica said...

You're right. Going to the doctor for something as trivial as a sinus infection isn't worth the hassle to continually explain "the whys" for avoiding certain things over and over again; especially when they rarely get it and it takes weeks to get your medication. I wish this were easier...and cheaper. I agree with Deborah, since being completely corn and allergen free I am the healthiest I've ever been.