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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17 thoughts on “Life in a Nutshell: How Anaphylaxis Impacts My Life

  1. This is like what I go through on a daily basis, except my enemy isn’t airborne peanuts (I am allergic to peanuts, just only by ingestion and physical contact), it’s airborne dairy, specifically heated dairy. I’m fine around cold stuff, just when it gets cooked… Into the air it goes and into the ER (and sometimes ICU as well) I go. It’s meant I had to transfer to being an online college student, I cannot fly safely anymore because I can’t walk through the airport terminal! I can’t walk into any restaurant. Nor any movie theaters (buttered popcorn is evil). I have to be careful inside whole foods and trader joes. I miss my old church. When I work with kids at (a different) church each week I wear gloves and they make sure they don’t pop popcorn or have pizza. I’m constantly on my guard. But each time I let my guard down and relax, I end up in the ER! Most people don’t realize that airborne allergens really can be serious. Like really serious. I landed in the ICU 2 weeks ago just because I walked into a Walmart that also had McDonald’s and didn’t realize it till it was too late.

    • Thank you so much for your comment! Sometimes I feel like the only adult living with anaphylaxis because so many of the allergen-free blogs focus on young children. You’re completely right that most people don’t realize at all how serious airborne allergens can be. I can’t even begin to count how many times I’ve had people ask me if peanuts or mushrooms (my other airborne enemy) make me sneeze (they assume it’s like seasonal allergies). But it’s not something mild and annoying, it’s completely life altering.

      My current church loves potlucks (cream of mushroom soup galore) and proving PB and Js as an option during their weekly meal for the homeless. This means that I’ll never be able to get involved in church beyond just sitting in service, but as soon as the service ends I have to run out because that’s when the mushrooms and peanut butter come out. And I think I’m most likely going to have to do online college to finish up by BA after my previous university didn’t workout just because of peanuts. People assume it’s like seasonal allergies, but our airborne allergies impact everything. =/

      Thank you again for commenting. I hope you’ll share more often!

      ~Kelsey

  2. That is my life. Add to that telling people that they can’t pet my allergen dog (despite his vest has patches that SAY “DO NOT PET”), and dealing with the other challenges that come with having a service dog (you make a lot of little kids cry…..)

    I can’t go to family functions anymore because they absolutely refuse to work with me. I had a cousin PM me on facebook last year informing me that my allergies aren’t as bad as I think they are, its actually my mother making me sick.
    I also get told “Its all in your head! Its impossible to be that allergic” from people and doctors.
    *sigh*

    • Jasmine,

      I can really empathize. Even though my extended family is very small they really don’t understand. The last time I went over to my grandpa’s house his girlfriend decided to feed the squirrels in their backyard with … drum roll … a huge bag of peanuts! I had such a bad reaction, it was super scary, but they still don’t “get” it. Not even close. =/

      I’m so sorry you deal with uneducated, unsympathetic people telling you that it’s all in your head. I get that a lot too and it makes it so much worse. We’re living with a life-altering disability, but sometimes people act as if we’re talking about unicorns or fairies.

      Thank you for commenting. I really appreciate hearing for you because, unlike the majority of people in the world, you truly understand a unique part of my life (a part of my life that limits and impacts everything). I hope you’ll continue to comment.

      ~Kelsey

  3. God bless you! Thanks for sharing — My kids ages, 9, 11 & 21 have life threatening nut allergies. I related to so much of your life — it breaks my heart to limit where the younger kids go, what they eat, who they play with… I sometimes feel like the food nazi when we have social gatherings with family because I have to double check everything. Restaurants are almost NEVER due to cross contamination. Thankfully there is an allergist in my state who has had great success with OIT and we have begun this long journey to freedom. Best wishes and blessings to you as you continue to navigate through life. God has a plan and it is AWESOME!

    • Tami,

      Thank you so much for your sweet comment. I also appreciate hearing from others who deal with life-threatening nut allergies on a daily basis. I feel like the food nazi at family gatherings, too. It sure makes life interesting, scary, and require so much more planning. Eating out is pretty much completely off limits for me, too. My family is hoping to go car camping in the near future, which means I’ll have to pretty much bring all of my own food. Doable but interesting.

      ~Kelsey

    • What is OIT please? I’m living this life now. “One” reason I finally quit my job was because of perfume allergies. The women used to wear different perfumes to see which ones got me sick (and not in a nice way). They thought I was faking it. I got so ill that it was like I had a full blown cold for 6 months. Finally an ENT got me some relief. But now I’m on medications that hurt my body in other ways.

      I go into shock if someone is cooking peppers and I’m around. Sometimes I can get out of there before it’s too late. One day my teenage daughter yanked me out of a kitchen because the other ladies started cooking bell peppers.

      I would be lost without my husband. He is really the only one who truly understands. My mom does to a point, but I’m not around her except for holidays and she lets me cook. Some of the other members of my family forget and wear perfume or cook and eat peppers while at my home before I realize it.

      Has anyone ever said to you, “Oh it’s only a little.”?

  4. Kelsey,
    Will definitely be commenting more! Its really nice to be able to talk with people who really understand what living with anaphylaxis is like. And it helps so much to know that others have problems with people understanding (or not understanding) food allergies. =)

  5. I can relate to so many of those items! Many of them are fears/worries/concerns as my child ages (he’s only a toddler now). I find myself explaining the difference between an intolerance and an allergy a lot and then I also find myself explaining that everyone’s allergies are different. I do this because people often will try to tell me that someone they know can take a pill when they want to eat dairy (lactose intolerant) and want to know if I’ve tried that or they know someone who manages their allergies differently.

    I feel for those who have airborne allergies. So far we are only contact and ingested allergies. I would be so scared to do anything if he were airborne. Thanks so much for sharing.

    • Dianty, I find myself emphasizing how different food allergies can be for different people, too. And the difference between seasonal allergies and food allergies. And the difference between a regular allergy an anaphylaxis. And the list goes on. I try to remind myself that it’s a chance to educate someone, help them understand, but sometimes I really wish I didn’t have to educate practically every single person I meet about such a major part of my life.

      Thank you for commenting! Always good to hear from people who can truly relate with how much allergies can impact life.

      ~Kelsey

  6. Thank you for this post! My son is 4 years old and has severe anaphylaxis to air-born dairy (usually from heated dairy) and severe allergies to at least 22 other foods. That means for us places like movie theaters and Starbucks are deadly. We are just beginning this crazy journey. Thank you for helping us through it! Please keep writing.

    • Amanda, I can really relate. There isn’t a single coffee shop in my area that’s safe due to peanuts. And I mostly just watch movies at home now (makes me kind of want a bigger TV). That must be so hard for you as his mother. Even though I’m 26-years-old I know it’s hard on my mom sometimes; I know how scary for her. But she’s also one of my biggest allies and the main person who has helped me get through learning to live with anaphylaxis. I’m glad that your son has you.

      I’ll hope you’ll comment again! I really appreciate hearing from others who have first-hand experience with airborne anaphylaxis.

      ~Kelsey

  7. Kelsey,
    Thank you for your post. My son has is ana to peanuts (not airborne luckily), but it has opened my eyes to a whole new world and a whole new challenge. I’m interested to know how you handled school till now (maybe it’s in another post, I have only read this one). I’m challenged and scared as my son is in Kindergarten, and I run into all the same things you have run into as well with people saying it’s not that serious, or not really understanding that he could die. My brother even selected a Thai restaurant for his birthday family dinner – which I panicked about for a week, brought my own food to, and ended up in tears when they still wanted to order peanut sauce. Since then (and maybe with some loud language and foul words in the restaurant) I think they get it – and they are now much better with family functions including birthday parties (no more chocolate candies, but things like suckers, licorice and jelly beans). Thank you for sharing your story, and for helping educate others. Wishing you all the best for a beautiful wedding. I think it will be perfect!

    • Terri, thank you so much taking the time to write an encouraging, personal comment. 🙂

      I’m so sorry to hear about your extended family not getting it! I’ve had a lot of issues with mine as well. Ugh. It adds a whole new level of stress due the holidays, which I’m sure you can fully relate with.

      As for the question about school, my peanut allergy didn’t develop until I was 21 (I’m 26 now, so I’ve had it for a little bit) so my mom never had to deal with the logistics of having a young anaphylactic child.

      My first experience with school and anaphylaxis happened when I went back to college a couple of years ago. I started off at a community college where I earned my two-year transfer degree and besides a couple of isolated problems (random person sneaking trail mix into class, that sort of thing) it went smoothly. The school had established no-food policies in the classrooms and library building, which didn’t make things perfect but helped immensely.

      When I transferred to a four-year university this last fall (2012), things got a lot more interesting. The school didn’t have no-food policies in the classrooms, but I was able to work with Disability Support Services (DSS) at first (they put up “peanut-free” signs on my classroom doors and contacted my teachers). It wasn’t nearly as safe as my community college, but it was working. Things came to ahead a couple of weeks ago though when the library buildings (the only buildings on campus where students hadn’t been allowed to eat lunch) changed their policy to allow food. And DSS removed my signs, even though they still considered my anaphylaxis a documented disability (you’ll have to read the post if you want the whole story).
      http://crunchycook.com/2013/05/08/how-i-had-to-leave-college-because-of-my-anaphylaxis/

      Hope that answers your question!

      ~Kelsey

      • Wow, I’m so sorry you had to deal with that! I don’t understand that ignorance. It really is not that difficult to make things like a library “food free”, especially when people’s lives are at risk. I just have a whole new understanding for it. I often tell people (especially those with young kids), that the fear that every parent with small kids felt sending their kid to school the day after the Sandy Hook tragedy is the same fear I (and every parent of an LTFA kid) feels EVERY SINGLE DAY. I pray he will come home alive. No one understands that it’s the same as fearing a loaded weapon. And it’s just peanut butter! So scary. Glad you didn’t have to deal with it growing up. I fear everything for my son. I want him to have as normal a life as possible, but I want to ensure he still has a life. It’s a tough balance. I am optimistic that people like you sharing your stories will encourage others, and will encourage an empathy that doesn’t yet exist. Hang in there Kelsey – you are doing all the right things!

  8. Thank you so much for spreading awareness about life threatening food allergies. We are dealing with this daily with my 6 year old daughter. Regardless of the medical documentation, independent health care plan, emergency action plan, and 504 plan we still have school kindergarten teacher, staff, administrators and the school nurse discounting her medical condition. To say the least, it has been very disheartening to deal with. Your writing brings a lot of hope and awareness. Please keep raising awareness and know that there are many others who are grateful for your leadership. Through your writing and speaking up you are helping to save lives. Your voice helps to protect my daughter and so many other children who have not yet developed their own voice. Thank you so much. May God bless you always.

    • Ms. Webb,

      I’m sorry it’s taken me so long to reply to your comment! Thank you so much for leaving such an encouraging, thoughtful comment. After my blog has some issues with some rather aggressively mean trolls a few weeks back, I’d honestly considered shutting the whole thing down completely. But getting comments like yours — hearing from people who can really relate — is encouraging. It not only makes me want to help raise awareness but also stay connected within the allergy community online because very few people who I know in person really “get” it, and even the ones who understand it the best don’t have to live with anaphylaxis.

      Thank you again for commenting. 🙂

      ~Kelsey

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