Life in a Nutshell: How Anaphylaxis Impacts My Life

PeanutsMy airborne anaphylaxis reaction to peanuts comes up frequently in conversation (anaphylaxis is just another way of saying possible death by peanuts if someone so much as opens a peanut-y product near me; it’s like what would happen to Superman if someone were to snack on a Kryptonite sandwich next to him).  The frequency of it coming up in conversation is partly due to me not-so-subtly injecting “I have a life-threatening anaphylactic reaction to peanuts” into conversations (awkward, yes, but it sure beats ending up in the ER later because they cracked open a PB and J).  Even without my smooth attempts at alerting those around me, my anaphylaxis comes up a lot because it impacts everything.

Unsure how anaphylaxis could impact so much?  Well, check out my list.

Life as a Grownup:

  1. Grocery shopping.  I have to bring a buddy with me whenever I need groceries.  There are still a few stores that are so dangerous they’re completely off limits, even when I have a bodyguard.
  2. Work.  My boss is amazing.  There are “peanut-free” signs all over the tutoring center where I work, and new coworkers are even trained on how to use an Epi-Pen (but this is all highly unusual and not at all what my previous jobs have been like).
  3. Buying our first house.  What if our neighbors have little tikes who eat peanut butter while running between our houses or the elderly couple likes to feed the squirrels?  While not completely avoidable, it’s definitely something to think about.  Therefore, the most important aspect of a new house: space between us and the neighbors.
  4. Wedding plans.  Originally, when Mr. M and I had talked about having about 50 people total I’d worried about how to insure that no one had just eaten peanuts (ending up in the ER on my wedding day isn’t something I’d pinned on my Pinterest Wedding Board).  We’d talked about including PLEASE, DON’T EAT PEANUTS BEFOREHAND in the invitation, but in the end opted for an even smaller wedding (10 people).  We chose to go small for a number of reasons, but the whole anaphylaxis thing did come into play.

Miscellaneous:

  1. Purse size.  Carrying a small purse will never be an option for me because I’m always loaded down with my double pack of Epi-Pens and enough Benadryl to wipe out seasonal allergies for everyone in the greater Seattle region.
  2. Cellphone.  My life literally depends on having a fully charged cellphone on my person at all times.  Remembering my charger is a safety issue, not just a matter of wanting to stay in touch with all my pals on Instagram.  And if I forget to turn my phone back on in the morning, my family will worry (and with good reason) that I’m in the ER, unable to respond.  So staying in touch is important for my safety as well as everyone’s peace of mind.
  3. Gardening.  I’m hoping to set up a vegetable garden once the Mr. Man and I get married, but in order to garden safely, I’m going to need to have raised beds with something like a tarp to keep the squirrels out.  And I’ll need willing hands to help me get my gardens going (I’ll be able to take care of the garden once it’s safe from squirrel visitors leaving their hidden peanuts behind).
  4. Goodnight kiss.  My fiancé completely avoids peanuts because he wants to keep me safe.  He knows it could truly be the kiss of death if he’d just eaten a PB and J.  I also have people (extended family, friends, random people I just met) worry about whether it’s safe for me to kiss my fiancé; I appreciate their concern and all but it’s still a little awkward.
  5. Maid of Honor’s responsibility.  My Maid of Honor will be carrying an emergency kit during the wedding, but it won’t have the usual safety pins and waterproof mascara—think Epi-Pens and Benadryl.

Hopes and Dreams:

  1. Career.  Just imagine.  I’ve sailed through the onslaught of rigorous questions.  End of the interview: “Do you have any questions?”  My only real concern would be about peanuts (where do people eat lunches, what do they usually eat, etc.), which wouldn’t really make me a top candidate.  Thankfully, life as an English composition tutor is pretty flexible and has the option of being done right out of my own home.  Changing things up with a regular 9am to 5pm office job might not be impossible, but it would be very dangerous and tricky.  And scary.  Very scary.
  2. Children.  A lot of focus in Blogland is on how parents raise children with food allergies or anaphylaxis (dealing with daycare and starting first grade), but what about when it’s the parent who has anaphylaxis?  While also not impossible, it would be trickier than usual to have kids because a lot of places geared at children (zoos, parks, Sunday school classrooms, school lunch rooms, etc.) often have peanut-y things.  And while my hypothetical children may not have problems with peanuts themselves, if they were exposed to something peanut-y while out, it could result in a medical emergency for me.
  3. Finishing my BA. The food culture on campus (where students eat, what they eat, the food policies in classrooms and library buildings, etc.) along with what the Disability Support Services office is like on campus will be important concerns to address when choosing which university I decide to transfer to next year.  Thankfully, there are also a lot of good online options now—not just diploma mills—which, as an adult learner who will be newly married and working, could be a great option

Socializing:

  1. Dating.  Things barely got off the ground with my fiancé thanks to his love of peanut butter bars.  In order to begin just socializing with me between college classes he had to develop new eating habits (he was pretty persistent though, so he still got Anaphylaxis Girl in the end and has become an amazing anaphylaxis ally).
  2. Visiting friends’ houses / apartments.  Before attending a graduation party or going over to a friend’s house for lunch I have to ask some odd questions: How often do you eat peanut products?  Do you leave things like bags of peanuts laying around?  This is why I’m looking forward to having my own home; I’ll be able to invite everyone over to my peanut-free place without the awkward inquiries.
  3. Making new friends.  Being my friend comes with unusual obligations, restrictions, and responsibilities.  It’s important that acquaintances don’t eat peanut stuff around me, or I could die.  And it’s equally important that they know what to do in an emergency.  Before hanging out with someone (peanuts can show up in some pretty random places so it’s good to be prepared) I have to train them on how to use my Epi-Pen and what to tell the paramedics.

Important Events:

  1. Family holidays / events.  The last time I went over to my grandpa’s house someone pulled out a big bag of peanuts and began throwing them around the yard for the squirrels.  Scary.  Super scary.  Yes, I had a reaction.  No, it didn’t change anything other than make me realize that I can’t go over to their house again because it’s not safe. (Thankfully, my immediate family and future in-laws are understanding and supportive.)
  2. Friends’ major life events.  As is true with most 26-year-olds, most of my friends are getting hitched soon.  And I would love to go to all of their weddings, but before I can RSVP I have to ask the same old questions about food.  And oftentimes I don’t get to go.  This is also true of engagement parties, bridal showers, birthday parties, graduation parties, baby showers, and even memorial services.  If it seems way too weird to ask about food, I just stay home.

Gettin’ Around:

  1. Planes.  There are at least a couple airlines that still serve peanuts, so calling ahead of time is important (this is a theme in my life).  I also have to talk with the stewardesses so that they can make an announcement asking the passengers to please avoid peanut products during the fight because, otherwise, they will have to land the plane if I go into anaphylactic shock (what’s scary is that it’s not an empty threat).
  2. Trains.  Trains are especially bad compared to buses, at least in my area of the world, because people tend to eat on trains a lot more often.  Unless I know a train will be so empty I’ll practically have a car to myself (it does happen but rarely), I try to avoid traveling by rail.
  3. Automobiles.  Carpooling, specifically.  Once again I have to ask strange, somewhat invasive questions about their eating habits but this time as it relates to their automobile.

Places to Go:

  1. Movie theaters.  It’s better to go earlier in the day (preferably the morning or a weekday).  And sticking with the films that have been out for a bit is a good idea, too.  The less people the better.  If people end up sitting near me, I have to ask them if they’re going to be eating anything peanut-y and explain that I’m anaphylactic (yes, it’s awkward to ask random strangers about their food and volunteer information about my medical history).
  2. Eating out.  Calling ahead is important whether it’s a coffee shop, restaurant, or bar and grill.  Never know where the specialty will be peanut butter cupcakes (yes, it’s a thing).
  3. Local and national parks.  Not good places to go on holidays, especially if they tend to have a lot of picnic areas.  Beaches are usually okay because everyone is swimming and you’re generally not supposed to eat while swimming anyway.  But peanuts show up in weird places.
  4. Church.  At my old church the pastor would make an announcement once a month reminding the extremely small congregation to not bring peanut products to the monthly potluck.  Without fail though one of the elderly members would make their famous peanut butter cookie recipe because they didn’t know that peanut butter was made out of peanuts.  It didn’t take long for me to realize that church really isn’t a safe option for me anymore. (One not-exactly-Christ-like member said that I should basically just go elsewhere because I was too much of an inconvenience.  Ouch.)
  5. The ballet / Opera / Theater.  Learned the hard way that it’s best to go to evening performances (avoid matinees because sometimes people pack their own lunches), and saving up for the more expensive seats can be worth it because people are much less likely to sneak food in.  In case you’re unaware, sneaking food in during the ballet is very uncouth.

Personal Consequences:

  1. Lack of independence.  I can’t go places alone unless I already know that it’s safe.  And while I love grocery shopping with Mr. M, sometimes it would be great to go to Fred Meyer or Safeway by myself for a change.  But it’s risky going into stores like that even with someone, so there’s no way Mr. M or my family would let me go shopping there alone.
  2. Lack of spontaneity.  Last minute plans aren’t really an option.  Even if I just want to try out a new coffee shop it’s important for me to call ahead of time to make sure nothing peanut-y is on the menu.
  3. Level of anxiety.  As a couple of folks have put it, I live in a war.  A war against my enemy: peanuts.  Every time I hear the terrifying rip of a wrapper I whirl around to identify the contents, hoping that I won’t end up in the ER.  It can be pretty stressful, but the more that I make a point to use the buddy system when shopping, have people come over to my house more often than going to theirs, and so forth, the more I can relax and feel normal (ish).
  4. Hope for the human race.  Every time someone tells me that peanut butter doesn’t have peanuts in it, I swear that a little bit of me dies as I mentally facepalm.
  5. Plenty of firsthand experience with people who aren’t exactly empathetic.  I’ve been told that I’m an inconvenience, dramatic, and even mentally ill (sometimes they’ll just say “It’s all in your head” but other times it’s a lot meaner than that).  I have an ADA recognized disability but because it’s invisible unless I’m currently going into anaphylactic shock, people often doubt its very existence.  This doesn’t exactly make thing easier, and the lack of understanding makes it scarier when I have to tell someone I don’t know very well about my anaphylaxis.    
  6. Sense of mortality.  Some people hope they die quietly in their bed surrounded by love ones, but I hope most of all that I don’t die from peanuts.  And that, the reality that peanuts could kill me without me even having to eat them, is why I have to be so careful.

Some people have not-so-empathetically suggested that I “let” anaphylaxis impact my life.  What they don’t understand though is my anaphylaxis is so serious it’s considered an ADA recognized disability, which means that it impacts and disables me all on its own.  Unfortunately, my disability is invisible—I look fairly normal, no one would guess going grocery shopping is challenging—but my disability is very real, nonetheless.  As a result of wanting to stay alive, and who can blame me, being responsible means doing everything I can to avoid my personal Kryptonite.

Part of the general confusion about airborne anaphylaxis comes from the word “smell” (people assume that when I say I have an airborne anaphylactic reaction it means I’m either reacting to, afraid of, or don’t like the smell of peanuts). It really is impossible to react to just the smell itself, but that doesn’t mean airborne reactions to very small amounts of the proteins in peanuts (what people are actually reacting to) aren’t real.

Some of my very worst reactions have happened when someone was eating something peanut-y near me and I had no idea until I started to choke (my throat begins to close up and I’ll stop breathing if immediate action isn’t taken).  I’d look around quickly while reaching for my emergency Benadryl and Epi-Pens, knowing that I was reacting to something because I couldn’t breath, and spot a peanut butter cookie or PB and J near me. So I don’t have to smell the peanuts or even be aware that they’re in the same vicinity as me to react.  And, unfortunately, I’m so sensitive to the protein I’m allergic to that it doesn’t require much exposure at all.

This doesn’t mean that I’m unable to have a full, satisfying life—it just takes more planning, flexibility and supportive friends and family who are willing to do things like go to the movie theater at odd times because that’s when it’s safer.  And, hey, Superman not only survives life with his anaphylaxis but regularly saves the world and still manages to be pretty cool.  But I still think the Man of Steel gets off easier than a lot of us anaphylactic folks since Kryptonite sandwiches haven’t really taken off yet.

Do you have further questions about food allergies or anaphylaxis (like what the heck anaphylaxis is anyway, why I can’t just leave the room when I run into peanuts, or why using my Epi-Pen doesn’t make an reaction go away)?  Well, you’re in luck!  Check out The 7 Most Common Question About Anaphylaxis.


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Allergy Bulling: When Food is a Weapon

Allergy bullyingAccording to CNN’s article, Allergy Bulling: When Food is a Weapon, “35% of kids over age 5 with food allergies have endured bullying, teasing or harassment. Parents of children with food allergies reported in the study that these incidents—both physical and verbal—happened because of food allergies” (Landau).

Thanks to my own life-threatening peanut allergy (anaphylaxis) I spend a lot of time and brain energy at college trying to keep myself safe.  It’s challenging and scary.  But at least, as an adult, school isn’t nearly as dangerous for me as it could be for a child with my allergy because I don’t deal will allergy bulling.  I can’t even imagine how scary that’d be.

“It’s hard for parents of food-allergic children to keep them safe at school when there are so many opportunities to eat snacks and meals with unsafe ingredients.  For some kids, just touching a certain food or inhaling particles of it could cause a reaction” (Landau).  That’s something Mr. Munger and I have talked about before.  Hopefully, if/when we have kids they won’t share my peanut allergy but if they do, school would be a very unsafe place for them.

Elementary schools are unsafe even for me as an adult. I used to volunteer to read with second graders, but I can’t risk it anymore because so many of the kids have peanut products for lunch.  If I read with a child who’d just eaten something with peanuts, I could end up in the ER.  So I can’t even imagine how scary it’d be as a kid to be bullied with something that could literally kill you.

Do you or your kids have any experience with allergy bullying?  Thankfully, my peanut allergy started later (I was 21 when it decided to join my list of food foes), so I never experienced living with a life-threatening allergy as a child.  It sounds terrifying for both the child and the parents.

It’s Official: I’m Allergic to the World

food-allergies“Wouldn’t it be bad if I found out I was allergic to more foods?”

My sister, Shannon, shot me back a worried look that said, “Don’t even joke about that!”

With my already nearly epic allergen list (peanuts, mushrooms, coconut, honeydew, and the inability to digest gluten or beef) I felt pretty confident that not a thing would show up during my food allergy testing.  How many food allergies can one gal have?  Apparently, quite a lot.

Yesterday, after my allergy testing was done, I felt like a car had run over me.  My body didn’t like the testing very much.  While the good news is that I’m feeling less like roadkill this morning,  the bad news is that I have TEN NEW FOOD ALLERGIES to try and navigate life with.  Oh, boy.

The happy woman doing my testing suddenly looked very grave: “I’ve never seen anything like it before.”  Not exactly what you want to hear.  She’d never seen anyone come out with so many food allergies.  And as she read of the list of the foods I had to say goodbye to, I felt like I was going into shock.

1. Milk
2. Eggs
3. Apples
4. Peaches
5. Pork
6. Shrimp
7. Soy bean
8. Strawberries
9. Tomatoes
10. Tuna

By the time she was finished reading off my new found food foes, I was laughing in that “better-call-the-men-in-the-white-coats” kind of way.  Seemed better than crying all over myself at the doctor’s office.

The results mean: buying pre-made foods is a luxury I don’t really have anymore, all of my favorite holiday dishes aren’t options, there’s no way I’m going on the four-week study abroad trip to Rome with my school, not sure how baking would even work, and just going to the grocery store will take even longer than usual thanks to all the ingredient-label reading.  And, also, every single recipe I’ve posted on The Crunchy Cook so far are things I can’t eat anymore.  That one probably makes me the most sad (I was already pretty sure Rome wasn’t happening).

The results also explain why I’m so hyper-sensitive to all of my allergies, why I feel crummy much of the time, and my stomach hurts so much.  It’s a shock to the system trying to wrap my head around my new list of food allergies, but I wouldn’t go back to not knowing about them for anything.  I wish I didn’t have any allergies, I wish I was easier to feed, but I don’t wish that I was blissfully unaware … because now I can start taking proper care of my body.

I know I’ll slowly figure out how to feed myself again, and eventually discover food I enjoy eating, too.  But I feel like I’m starting over completely and it’s overwhelming.

Mom hugged me and said, “You’re not on your own.  We’ll figure this out together.”  And she’s right.