A Letter to My Friends

This started as a “note” on Facebook and sat around in draft format for months.  I decided to make it a blog post. 

Hey friends. I really appreciate the questions of concern and expressions of sympathy that I’ve gotten from people since my health took a serious dive 5 months ago, and I do not want anyone for one second to feel that their interest in my well-being is not appreciated. It most definitely is.  Having this kind of intense personal disaster has really showed me how caring and wonderful people are really capable of being, and has also showed me how many of the folks I have gotten to know over the last couple of years are actually my friends, not just fair-weather acquaintances.

So first, thank you SO MUCH to my friends for being awesome human beings and making me feel truly loved and like part of a community.  I love you right back, and will do my level best to be there for you in the same way you’ve been there for me.

Now that I’ve said that mushy stuff, I want to tell you a few things about what it’s like to be me. Some of it can be generalized to all chronic health conditions, but I don’t want to claim to speak for anyone but myself, you know?

My hope in sharing this information is that you can use it to be an ally and educate others around you when you hear them being insensitive towards people with severe food allergies and other chronic and long-term health problems, and so that you can possibly avoid saying stuff that, while well-meaning and well-received when coming from you, is also the kind of thing that less awesome people say to me all of the time, and don’t mean well when they say it.

Things Not To Say to Me

“Are you feeling better?”

This is a great question to ask of someone who has had a cold or the flu, or possibly even a surgery to repair a one-time injury. But for myself and many others, our health condition is NOT one that is going to magically go away. For some conditions, a miraculous recovery is not outside of the realm of possibility, but it’s usually extremely unlikely. While I understand that this question means that you care about how I am doing and hope that I am doing well, this particular phrasing makes it feel like you actually expect that I am going to suddenly STOP being allergic to the entire world and start having a “normal” life again. Warm fuzzy sentiments aside, there is always an undercurrent of alienation at having my situation so massively misunderstood.

Unless of course I actually did just have a cold or the flu, in which case thanks for asking.

“But you *look* healthy.”

Thank you for the compliment. It’s a good self-esteem boost.  And I do genuinely take it as a compliment when it comes from friends. But please understand that other people have used this phrase to imply (or state outright) that because I look healthy I am healthy and should quit claiming otherwise. You can understand why it’s unpleasant to hear someone I care about utter that phrase.

“I really know how you feel.”

Actually, none of y’all have ever said this to me, and I consider that an indication of my excellent taste in friends. But, just in case it ever occurs to you to do so, please consider carefully.

Unless you have:

  • Eaten two foods, and only two foods, without spices or cooking oils, for weeks on end because everything else made your throat close up .
  • Had to carefully plan your weekly shopping trips because you can only buy food you can eat from specific vendors at the weekly (or bi-weekly, for some people) farmers’ market and would literally face going hungry if you didn’t buy enough for the coming week.
  • Had to consider carefully what to bring with you every time you leave your house because you can’t eat or drink anything that you didn’t bring yourself, not even the water.

Unless you’ve been in that position (and actually a number of people I know have: it seems to be an unfortunately common experience for people with severe food allergies) then no, no you don’t know how it feels. I understand that you sympathize and that you can imagine how it feels, but no, you don’t know. 

How My Life is Different Now

This list is not exhaustive, obviously. It’s just a collection of the more outlandish changes I’ve had to make/limitations I’ve had to accept in my life due to my corn allergy.  I’m not writing this up to gain sympathy, though I do spend plenty of time feeling sorry for myself. I’m just trying to give you an insight into how many basic daily tasks are affected by such a non-exotic health condition.

I have trouble finding water to drink.

Most brands of bottled water use vegetable (corn) fibers in the plastic bottles, and often use corn-based chemicals to disinfect the water. Even a corn-based antimicrobial agent in a water filter will leech enough corn into the water to cause me an issue. Seattle tapwater is so far safe for me, but not all tap water is depending on how it’s treated. I don’t know a lot of people with water softeners, but water softener salts also contain corn.

I cannot drink *anything*  from a glass or cup at a bar.

Actually, I can’t drink or eat anything from the dishes in a bar or restaurant because I am allergic to the soaps and sanitizers used on the glassware, and seem to also have random problems with plastic cups, either the plastic itself or something they are dusted with.  If I am at a show and need to drink water, I have to go drink from the bathroom tap,and hope that the tapwater is not treated with corn-based chemicals, which it sometimes is. The one smidgen of hope here is that if I can identify a safe pre-bottled beverage, like a cider or a gluten free beer, and found a bar that carried said beverage, I could have that.

I can’t eat out at a restaurant, ever.

That was covered above, but it is significant enough that I felt it deserved a bullet point. Even if they miraculously used a dish detergent that was corn-free, most cooking oils are cross-contaminated with corn, and there’s no way they could get their pans clean enough to be safe for me. Related to that, I also can’t use dishes from other peoples’ houses unless I rewash them with my own dish soap.

I can’t see movies in the theater.

My allergy is airborne, so places with popcorn are no good for me. While I might be able to make some arrangements to visit a theater while it is not busy and take plenty of antihistamines ahead of time, the prospect is risky and so it’s not something I can do often.

I can’t eat most produce and have very few available protein sources.

We’re talking whole, organic foods here. Organic produce is waxed, gassed, and sprayed with corn-based “organic” substances.  Organic, pastured meat is sprayed with organic corn-based disinfectants before carving and packaging, and then placed in packages with soaker pads that are soaked in corn-based antimicrobial agents and then wrapped in plastic that is dusted with corn starch. Beans + grains would be a good option for protein, but I seem to react to those too. I haven’t yet figured out if this is a separate allergy or contamination in the fields/storage facilities/processing facilities. So no, just because it “seems” natural or organic doesn’t mean I can eat it.

Going to crowded places is a health hazard for me.

Cleaning products, perfumes, laundry detergent, lotions, and conditioners are all full of corn-based chemicals, even the “all natural” stuff. Going to an art gallery, a concert, or even  just the grocery store usually leaves me with at least a mild headache, if not a full on hay fever-like reaction.

There is a nonzero chance that in a medical emergency, health care providers will kill me while trying to save me.

There is corn-derived chemical in lactated ringers solution, which is the IV fluid that hospitals give you if you are dehydrated and before a number of medical procedures, and a corn sugar (dextrose) is often added to that solution. There is also corn sugar and other corn-derived chemicals in many other injectables, and corn starches and sugars in most prescription drugs. I have never been injected with dextrose to know what would happen, but considering that my reaction to ingested dextrose is anaphylactic, I suspect an intravenous dose would be disastrous.

This is probably the way my life is going to be forever.

A miraculous recovery isn’t *completely* impossible, and it does sound like it has happened that people have been as sick as me and come back from it to a more reasonable level of sensitivity. But I absolutely cannot assume or plan for that being the case. So this is my life for now. The best I can hope for is to find more efficient ways to cope with the accommodations I have to make so that I can go back to focusing on living life instead of just surviving.

Thank You For Your Patience

My other hope in sharing this is that you will be understanding about the fact that I cannot seem to STFU about my allergy. Because it pervades every single aspect of my life, the topic feels relevant to most conversations.  And since it’s on my mind a lot, it’s pretty hard not to talk about it, even if I don’t really want to. I often feel self-conscious about talking about it, but I can’t seem to stop myself.

So if you’ve actually read to the end of this, I hope that you’ll understand why that is and have some patience with me when I go off on a tear about how corn is in absolutely everything and I can’t go anywhere or eat anything ever again.

8 thoughts on “A Letter to My Friends

  1. Thank you for saying this out loud! Very few people take it seriously because it is a “food allergy” so just stop eating it–but how many foods do you wear, breathe, bathe with, live in, medicate with and blow your nose on? Where does it end? How do you cope? I’m so glad I don’t have an anaphylactic reaction, but each year the effects become worse (maybe because it hides in more and more things), so I’m a little terrified that one night I won’t wake up wheezing–I just won’t wake up at all 😦

    I’ve had weeks where I’m reduced to eating only two foods that I know are safe while I figure out what it is that’s suddenly bowling me over–only to discover with utter betrayal that those foods, the last on the shelf without corn-derived ingredients, have recently changed their recipes. Vinegar, for goodness sake! Why would you suddenly start putting vinegar in your bread? I remember back when all this started and my ears were itching, the doctor suggested I try putting a drop of white, distilled vinegar in my ears (shudders). Doctors are the worst of the non-believers. When they routinely ask if I’m allergic to anything and I say “corn,” they try to correct me and say, “I meant allergies to medicine.” Yes, and so did I. My medical allergies include “everything.” I’ve seen what corn starch does to my skin. I shudder to think what it does to my intestines. They suggest that the “tiny bit” of corn starch in a pill “couldn’t be that bad,” I ask if it’s okay to compound their multivitamin using poison ivy.

    Poison ivy always gets their attention. It’s my favorite comparison. The best one is to ask if they would enjoy replacing their toilet paper with poison ivy… I swear their eyes glaze over as they take a tiny step into my world, and then retreat quickly and never mention it again (unless they’ve found some wonderful thing that they’re quite certain I can eat-wear-breathe-bathe with safely, and then they’re usually wrong and I have to thank them for their good intentions because I know it means they care and I love them for it).

    If I “look so healthy” it’s only because no one has managed to kill me, yet, but every year they try harder… “I’m allergic to everything,” is not hyperbole when you’re allergic to corn. I’m even allergic to allergy medicine.

    So– Thank you. Thanks for saying it out loud. I hate sounding mean and I’ve gotten so tired of arguing that I just smile and nod, now, and read every ingredient compulsively while my family is convinced that I’m mentally ill. I know this blog is old, and I hope you’ve managed to survive another year. YGMH ❤

    1. Thanks so much. I’m really glad that this was inspiring for someone. I don’t generally do a lot of “lifestyle” posts to the blog. Part of it is lack of time. Typing up some information happens fast- typing up something intensely personal really requires a lot of focus. Er, and also I frankly don’t usually feel like exposing myself by sharing about how my disability makes me *feel*. I’m just trying to provide info to help other people make better decisions for themselves. I do my emotional processing somewhere more private, usually. Knowing that one of the few times I’ve put myself out there has been helpful to others is really encouraging.

      I indeed have lived another year. In many ways I’m worse, but still doing better. I have gotten more sensitive to corn and discovered new allergens. Ihave had some pretty intense setbacks as far as losing more and more foods due to realizing that they were somewhat corny or that i was allergic to teh food itself, but I have learned how to recognize reactions sooner and eliminate the cuplrits, as well as how to treat reactions better so they are less of a big deal.

      I hope that’s true for you as well. I have to recommendations for you based on what you’ve just shared with me:

      1) Get some support so that you don’t have to feel alone when your family is acting like you’re crazy. Join the Delphi Forums or the Facebook Corn Allergy Group. Or both.

      2) Consider simplifying your diet by going for more whole & self-prepared foods. What you described with the ingredients change in bread is a huge problem for the corn allergic and the only way to avoid those nasty surprises is to quit eating things that come in packages as much as possible. Get a bread machine and bake your own bread- it’s really easy when you can just hit a button. Make your snacks ahead and freeze them so you can just grab and go. I know that life is busy and this stuff is hard, but it helped my health so much to do this.

      Anyway feel free to ignore that advice, but I just thought I’d put it out there in case it saves you some pain.

  2. I know this is an old post, but it’s really great and inspiring. Thanks and thank you for your support throughout 🙂

  3. I have severe MCS (chemical allergies), CFIDS, HMT (lead, mercury poisoning and aluminum toxicity) POTS, and a host of overlapping illnesses [including multiple organ failure] so I could relate to a lot of what you posted, especially the callous and very insulting “well you look ok/well/fine” which literally makes me want to murder that person with my stare! And don’t get me started on moronic, uneducated and/or malicious doctors and nurses. no, they’re not so innocent.

    Hospitals are truly in business to kill! If you think that’s paranoid, do a search on how much more they profit if they “accidentally” kill you vs. heal you! Organ trafficking is 1000% worse in USA hospitals than it is in China. So if you’re an organ donor, reconsider fast: many (dozens? Hundreds? Thousands?) loved ones are falsely declared dead and organs removed with the person fully conscious but paralyzed. THis is not just movies, folks! If you want to stay alive, stay put of hospitals!

    For me, (no corn allergy but corn in my home country is pig fattening feed, not fit for human consumption and now it is all GMO cross-contaminated, BT toxin found growing in gut of those who net it, look up Morgellons for more info ), the IV plastics chemicals would kill me instantly. So YES, I do know how you feel, we share the same fears! Going buy food and waiting in line behind perfumed people, then the cashier grabs a toxic chemical spray and starts spraying the conveyor belt and they get upset when I blurt out “STOP!” as if that were profane & rude when this can be lethal to me… I get it! To top it all off, imagine being in pain and living in a motel with people smoking and it enters your room: this is my reality! Cops & motel mgr refuse to enforce the city smoking ban ordinance. People are inconsiderate. This is a living hell. I cannot cope with noise (also have candida, pyroluria and methylation issues), and living in motels in sheer hell, I have no home, no one to help me, no friends, no family!

    I need to hit send due to poor Internet. One more…

  4. ^^those who EAT it (corn), not net, sorry keyboard changes what I typed.

    Anyway, thank u for sharing and educating others. I also hate being called brave (this by “friends” as their M.O. for refusing to rent their spare room to me or help in any way possible!) for living with these illnesses as if I had a choice. One other who is no longer a friend, for all consolation as I was crying my eyes out on the phone, replied, when I said “what would u do in my place”, said without missing a beat: “I would kill myself!” so if you have friends, you are blessed and I envy you cos this bitch Valerie said to me, a few days later: ” you already know what to do, i told you what I would do ‘kill myself’ ” :-/

    Now, i must add: I have never heard of organic produce being gassed or waxed, that s conventional farming only SFAIK. I do know that Wellness Meats sprays their carcasses with GMO corn. It all came out circa 2009, we were fighting bloggers such as one whose aka sounds like Esclave to Fromage (but in English!) 😉 These so-called “mamas” of heath and pseudo wellness are hypocrites: they all link affiliates to these toxic meats, that slave person even quoted Jeffrey M Smith as saying that “WELLNESS meats sprayed with GMO corn are fine to eat even with allergies” (don’t know if he said that, she posted the quote and links) when he’s the pioneer of anti-GMO crusade!

    Life extension products are filled with so much toxic crap, they ought to be called Life Reducing supplements. I like Dr Mercola but even found toxchems he crusades against, listed in some of his overpriced, Needless Markup Mercola brand remedies!

    Anyway, hang in there! Never mind the haters, and they are many who spew hate against the disabled, hope some day they are on the receiving end. They truly deserve it! One time this woman I knew said to me in line, at the store: “I wish I too had an illness that allows me to be in bed all day!” Needless to say, the entire register area turned when I gave her my ” HOW DARE YOU!!???” speech. This was over 20 years ago. I sincerely pray she caught worse, suffered in agony and is dead now. No apologies, I have nothing but ill-will towards those spew such hate towards me when I’m down.

    Thanks for being there and blessings to you! 🙂

    1. Hi Raven,

      Thanks for sharing your experiences.

      You wrote a lot, and I don’t want to dismiss what you wrote, so I will start with “I hear you, and I appreciate what you are sharing.” I’m short on time so a point-by-point isn’t going to happen today. 🙂

      I did want to specifically respond to your statement about organic produce, as this is a really important distinction for anyone with chemical sensitivity, mast cell disease, or multiple allergies.

      In the United States at least, there are a number of completely non-toxic products (at least according to governmental standards) that can be applied to “Certified Organic” food. In the context of corn allergy or other food allergies, this is a problem because non-toxic active ingredient can still be derived from corn or another allergen. If the active ingredient is not, the *inactive* ingredients can still be derived from corn or another allergen, and with corn they almost definitely will be. Ethanol is a “non-toxic” solvent. Citric acid is a natural, organic preservative. Glycerin/glycerites will emulsify, thicken, and allow a spray to “coat” the produce.

      Here is some more info on organic pesticides: http://www.npr.org/sections/health-shots/2011/06/18/137249264/organic-pesticides-not-an-oxymoron

      Antimicrobials and antifungals are a similar situation, organic yet still toxic for those with specific allergies or sensitivities.

      Regarding waxing, carnauba and shellac (from the lac beetle) are two certified organic fruit and vegetable waxes. Similar to sprays, with corn alelrgy it’s not so much the wax itself as what else may be added to it to make it easy to apply: http://www.whfoods.com/genpage.php?tname=george&dbid=175

      Regarding gas ripening, this is a common process even with organic fruit. I am not sure the issue with gas ripening but we know that the greener the bananas, the better corn allergy people seem to do with them: https://www.youtube.com/watch?v=fGLK_vBUymA&t=98s

      1. Wow! Thanks so much for this info, C.A.G! And for your kind words! 🙂 no worries, I get it: sometimes I can’t even listen (or read) because my brain isn’t functioning well in receptive mode but I have no problem writing!

        Say, after I hit send, I remembered a female user from a Blogspot on corn allergies who was targeted by the other bloggers who were defending the US Death Meats (aka “Wellness”) and I took the no corn girl’s side, only I didn’t mince my words with the Slave and other GMO sell out gals, LOL! Was that you? :0) no idea what aka I used then. I had a twitter back then. Maybe that aka? I was on an anti-GMO crusade.

        I truly feel for you and how difficult your condition is to live with! I am shocked to read they use the very toxic mineral (aka metal) copper! This might be why I react to organic vegetables! We who live with pyroluria (or those with Wison’s disease) must lower our copper levels, it’s extremely toxic and dangerous (unlike article states!) :-/

        I knew they used a “natural” something on organic produce, didn’t know it was that toxic! :-/ I have heard of private individuals planting tobacco near organic crops in their own backyard gardens cos pests detest the stench (as much as I do) and won’t go near those crops.

        Well, it’s near impossible to get well with so much against us, even when we work so hard to control our diet and everything around us! I already try to only buy hard shell/thick peel fruits but it limits things even worse! (avocados are said to be high copper, plus organic ones develop white mold inside fast in fridge, and I’ve lived in many [far from the other] cities, it always happens — doesn’t happen to me with conventional ones but I read they inject the tree trunks with I forgot what synthetic poisons/hormones? so I gave up on them!)

        I can only see the 1st link, the 2nd crashed my browser upon clicking (my very old device is incompatible with many high graphics sites) and will try the video later.

        Thanks again and sorry for making this one long again! Take care! 🙂

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