Peanut Anaphylaxis: The Most Frequently Asked Questions

peanut butter sandwichMost people aren’t regularly questioned about their diet, but when you live with anaphylaxis it’s just part of life.  People have a lot of questions because, unless someone has a family member or close friend who lives with anaphylaxis, the whole concept of a life-threatening allergy to some sort of food is pretty foreign.  And understandably so.  Anaphylaxis means so much more than just a limited diet—it means a limited life and a completely different style of living.

This doesn’t mean that I’m unable to have a full, satisfying life, though, but it does takes more planning and flexibility.

One thing that helps make living with anaphylaxis easier is when people take the time to understand, so I’ve compiled a list of the most common questions I’m asked:

1. Do you react to the smell of peanuts?

Nope.  Part of the general confusion about airborne anaphylaxis comes from when folks use 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, though, but that doesn’t mean airborne reactions to even trace amounts of the proteins in peanuts (what people are actually reacting to) aren’t real.

2. What is anaphylaxis?

Let’s look at a quick definition of anaphylaxis:

“Anaphylaxis is a severe, potentially life-threatening allergic reaction. It can occur within seconds or minutes of exposure to something you’re allergic to, such as a peanut or the venom from a bee sting.

“The flood of chemicals released by your immune system during anaphylaxis can cause you to go into shock; your blood pressure drops suddenly and your airways narrow, blocking normal breathing … Anaphylaxis requires an immediate trip to the emergency department and an injection of epinephrine [Epi-Pen].  If anaphylaxis isn’t treated right away, it can lead to unconsciousness or even death.”  From the Mayo Clinic’s website.

Basically, anaphylaxis means someone could die, not just feel discomfort, if they’re exposed to their allergen.  It’s also so extreme that it’s considered a recognized ADA disability because it impairs breathing (which is why it can cause death).

I’m allergic to a bunch of trees and flowers, cows, tomatoes, soy, dairy, and the list goes on, but none of them besides peanuts and mushrooms—even though some of them are extremely unpleasant to have reactions to and could even result in me missing work—are anaphylactic reactions.  This doesn’t mean my other reactions aren’t a big deal, it just means they’re not life-threatening or a ADA recognized disability.

A lot of times there’ll be confusion when someone is talking about an anaphylaxis reaction and using the word “allergy” because everyone imagines the person is just breaking into hives or sneezing.  It’s really unfortunate that people too often imagine sneezing when an anaphylactic reaction to something like peanuts or a bee sting is actually closer to someone eating a deadly poison—death is a very realistic concern.

3.  Are you sure it’s anaphylaxis and not a panic attack?

Well, I didn’t self-diagnose myself as having anaphylaxis.  I told several doctors and allergists what was happening when I was exposed to peanuts, and they told me I’d learned the hard way that I have an airborne anaphylactic reaction to a protein in peanuts.

Also, important to note: some of my very worst anaphylaxis reactions have happened when someone was eating something peanut-y near me and I had no idea I was near peanuts 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 breathe.  And then I’ll spot a peanut butter cookie or PB and J near me that I hadn’t seen or even smelled previously.

This has happened countless times—on the train, in a college classroom, at the ballet (the person behind me snuck a peanut butter sandwich in, and nobody knew), standing in line at Disneyland, and all kinds of other places.  I’ll tell whoever is with me, “I’m having trouble breathing!”  And we’ll both look around while getting me to an easily-accessible location in case the paramedics have to come and, oftentimes fairly quickly, we identify some peanut product that had previously escaped our notice.

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 peanut protein I’m allergic to that it doesn’t require much exposure at all to send me into anaphylactic shock.  This is why whenever I go to my regular doctor or allergist I’m given the “you-could-die-if-you-didn’t-have-your-Epi-Pen” lecture (they’re always glad to see that it’s on my person).

4. Have you experienced an anaphylactic reaction before?

Yup, I sure have.  A number of times, unfortunately.  One of the most memorable was when I was in Disneyland with my fiancé and our families in September 2012.  A woman in front of us in line for a ride opened a treat with peanuts.  My throat began to close up, I took instant Benadryl but it didn’t work.  My fiancé, Mr. M, had to give me my Epi-Pen and call 911, and we spent about 10 hours in the ER room.  It was a terrifying start to our Disneyland vacation.

Usually my reactions don’t end up with me in the ER, but every single one of them has the possibility to become that serious.  And if I didn’t immediately take Benadryl every time, my peanut reactions would always lead to the ER because unfortunately the reactions don’t just wear off if I get fresh air or go away after a while—they get worse.

5.  Can’t you just leave the room when you’re having a reaction?

There’s sometimes the misunderstanding that because I’m so extremely sensitive to peanuts it’ll act as some kind of sixth sense—alerting me to the dangers before I start to have a major reaction.  Or that if I see peanut-y products, like candies or a PB and J, that I just need to get out of the area.

Unfortunately, by the time that I see something peanut-y that’s unwrapped or start to have a reaction (my throat starts closing up), it’s too late.  I always leave the room quickly, but at that point I’m already having a reaction.

By the time I notice unwrapped peanuts in an area, I’m smack-dab in the middle of a life-threatening medical emergency.  As a result, the only way to avoid anaphylactic reactions is by not being exposed to the allergen (in my case, peanuts) in the first place.

6.  Have you tried masking?

This is a very common suggestion that people make, and something I actually talked with my doctor about a while back.  It really does seem like a great idea at first, which I completely get because I’d wondered if it’d work, too.

My doctor said that the mask itself likely wouldn’t protect me from having anaphylactic reactions.  But the trouble is that even if I had a good enough mask that it did help while I wore it, if I were exposed to peanuts while wearing a mask I’d have a reaction as soon as I took the mask off.  For example, I’ve reacted to my clothing after having been exposed to peanuts.

It’s like if someone encountered a toxic spill; wearing a mask wouldn’t help because it would be on their clothing and everywhere.  As a result, once I get home from having a major reaction I have to shower and wash my clothes to make sure the particles are completely off of everything (after I have an anaphylactic reaction I’m much, much more sensitive even than normal so it’s very important to get everything as clean and peanut-free as possible).

7. Will you outgrow it?  

Sometimes—but not always—people who have food allergies as children will outgrow their allergies as they get older.  Not something to bank on, though and, if you’re talking to the parent of a child with food allergies, don’t tell them it’ll all be a-okay in a couple of years, because there’s no way of knowing if that particular child will be one of the lucky ones.  And they likely won’t be.

That said, I don’t even have the chance of being one of the lucky kiddos to outgrow my food allergies because my peanut allergy started when I was 21 (I’m 26 now for reference).  Those of us who develop food allergies as adults are more apt (I honestly don’t know why) do be anaphylactic.  And we also don’t outgrow our food foes.   

8. Can’t you just use your Epi-Pen?

A lot of people think that as long as I have my magical Epi-Pen on me that I’ll be fine, but all Epi-Pens truly do is override the anaphylactic reaction temporarily.  If I had to use my Epi-Pen it wouldn’t fix things; it’d mean I’d have to be rushed to the ER in an ambulance before the reaction returned with full force.  Basically, it just buys me a little more time (I’ve been told about twenty minutes, but I think it’d depend on the severity of the allergy).

It’s not a solution; it just provides me with enough time to hopefully get to the ER before going unconscious or dying.

Epi-Pens even say on the directions to call 911 immediately after using.  And, believe me, paramedics take it very seriously when you tell them you just had to use your Epi-Pen.

9. Can you take medication or get allergy shots?  

There’s no magic pill that will allow me to eat or be in the same room as peanuts.  Boy, it would be nice if there was, though.  And allergies shots are for your hay-fever variety of allergies, not food-induced anaphylaxis.

10. Do you miss peanuts?

I used to adore peanuts.  I’d even made up my own peanut-butter based mythology (whoever gets to eat the swirl at the top of a freshly opened jar of peanut butter got a wish).  And the summer of 2005, right after I graduated from high school, I lived in Hungary for about four months.  A land that was virtually void of my favorite snack, so my mom mailed me a jar of creamy Skippy every month.

That was then.  Now peanuts and peanut butter are no longer a homey treat when I’m far away—they’re something I have to spend my entire life avoiding.  So even though I was extra fond of peanut butter originally, I don’t miss eating the sticky, gooey product out of the jar.  What I truly miss is the convenience of not having to live a peanut-focused life thanks to anaphylaxis.

Check out my article on how my peanut reaction truly impacts life on a daily basis: Life in a Nutshell: How Anaphylaxis Impacts My Life


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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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How I Was Kicked out of College Because of My Anaphylaxis

13094044-peanuts--peanut-butterThe office of Disability Support  Services (DSS) at the University of Washington Tacoma extension campus considered my anaphylactic airborne reaction to peanuts to be so serious that it was documented disability.  I didn’t have to eat or even touch peanuts for my throat to start closing up; my life would be in danger if a classmate so much as ate a peanut-y treat during lecture.  This meant going to school was risky—very risky.  And I knew that better than anyone.  But I thought I had support.

Reasonable Accommodations

Despite the risks, I didn’t ask the University of Washington to ban peanuts from the campus or require all of the security staff to be trained on how to use an Epi-Pen (although, both would have made me much safer).  Instead, I worked with the DSS office to figure out what my reasonable accommodations were: visible “peanut-free” signs on my classroom doors to remind students, teachers would be contacted by DSS so they’d know to enforce the policy, and an email was sent out at the beginning of each quarter alerting everyone who’d be in my classrooms that quarter not to eat peanuts in those rooms.

The game plan wasn’t perfect, and I knew my “peanut-free” signs wouldn’t truly prevent a rule-breaker from eating their Reese’s snack in my classroom.  Because the university is an urban campus (right in the heart of the fun, artsy section of the city), it doesn’t have a cafeteria, so people eat pretty much everywhere.  This is dangerous for me.  There also aren’t rules about eating in classrooms.  Extra dangerous.  While my accommodations may not have been perfect, having support from my university made the difference between whether or not I could attend the school.

Food in the Library

This quarter (Spring 2013) the food policy in the library buildings changed to allow food, so it became very challenging for me to find anywhere relatively safe to study, work on a group project, or eat my own lunch.  And I’d completely lost access to the tutoring center, computers and printers in the library and the books (how do you go to college and not have access to the books?).  I was told the policy was just a “pilot program”; something that could be changed if the library received enough complaints.  So I tried to alert people in charge at the library to the fact that I was experiencing an access issue, and also a safety issue, to due to my disability.

The director in charge of the library was concerned, contacted the DSS office, and decided to return to the original food policy—no food in the library buildings.  The school Chancellor (the school president, the woman in charge) then got involved, and told the library that they wouldn’t be changing the policy back; the “pilot” was now the rule.

This left me without anywhere relatively safe to study on campus.  And I still couldn’t access the library tutors, librarians, computers and printers, or the books.

And Then Everything Got Worse

At this same time, and of course right at midterms, the Chancellor also took away my official disability accommodations.  Completely.  No signs, no support, nothing.

Due to the signage, the DSS office was told that my disability was a “facility issue” now because it impacted the building and, therefore, was no longer under their jurisdiction.  Despite still having a life-threatening documented disability (whether it was a disability or not was never in question), I was left high and dry.

I’d basically been identified by the school Chancellor as a possible liability.  The way she put it was that she didn’t want “peanut-free” signs because that wasn’t a “promise” she could keep.  In other words, the school couldn’t guarantee my safety and didn’t want to get slapped with a lawsuit if I ended up in the ER or died; therefore, they’d do nothing.  No signs.  No accommodations through DSS.  This meant forbidding the library director from returning the library buildings to being food-free and taking away my disability accommodations completely.

My anaphylaxis had become a weapon—a way to scare me off of campus.

You’ve Got to be Kidding Me

I met with the university Chancellor and one of the members of student government last week to discuss the situation; she made it very clear that she didn’t think I should be at the school at all, or at any of UW’s other campuses.  And that I was just a liability as far as she was concerned.

After our meeting I’d thought there’d been enough compromise to at least keep me in school until the end of the quarter, but I didn’t think I’d be able to return in the fall for my senior year.  But our “compromise” turned out to be all talk.

The Chancellor had told me that I could no longer get my accommodations through DSS and, when it came to handling my disability, I would only have access to her office from now on (something I don’t think she was at all legally allowed to do).  I had been removed completely from DSS’s charge and paced fully under the Chancellor, who is neither an official DSS worker nor an allergist.  As a result, she said that her office would make me signs—better signs even, more professional looking.

Well, they did make me signs.  But they were a joke.  They weren’t on the classroom doors—where they needed to be to remind students and staff.  And they weren’t at all visible.  The signs looked like they’d just printed something directly out of Word—12 point font, Times New Roman, black ink on a white piece of paper.  Completely invisible.

The signs were also hidden; one was at the very front of the classroom next to another sign (ironically the statement about how school doesn’t discriminate based on things like disabilities) and stuck on the wall with blue painters tape (yup, that’s professional looking).  The other sign was lost on a cluttered bulletin board in the back of the class; it took me and a friend hunting before we were finally able to find it.

I didn’t want signs just for the sake of having signs; I needed visible reminders to my classmates and instructors that would help keep me safer.

I was also promised an unofficial “office” with a key, so that I could determine who went into it.  I was given a key … but not to the “office.”  The key unlocked an entire wing where the adjuncts’ offices were.  My little room was the only one with a printer and computer, so if anyone needed to print something they’d go into my office.  And because I didn’t have a key to keep them out (or even a sign on the door saying that it was being used), there was no way for me to keep the room safer than any other faculty-only area on campus.  And the office didn’t even had a window, so I wouldn’t have even been able to air it out if there was ever a problem.

Saying Goodbye to My Academic Dreams

Without even a little support from my previously extremely helpful school and no access to the Disability Support Services office thanks to the Chancellor telling them that they could no longer work with me, I was basically barred from the university because of my disability.  It was unsafe for me to attend my classes, or even go to school to take my midterms.  And my school had made it clear that they weren’t even going to assist in helping to protect my life, so I had to drop my classes.  And my program of study (the only one of its kind in the area, my dream degree).  And left the University of Washington Tacoma completely.

I would’ve been a third-generation Husky alumni when I graduate; my grandpa and mom were so excited for me.  Now, because my degree was so specific, I’ll have to start back over with 200-level course requirements, which will likely add at least another year, if not two, to my prospective graduation date.  And I have to transfer to another university when I’d wanted to finish not only my BA at my school but also do my grad work at UW Tacoma.  I now wonder if I’ll ever even finish my four-year-degree let alone grad school.  My transcript was beautiful—high honors all around—now I’ll have to explain to future prospective schools why I got all “W’s” (withdrawn) this quarter.

My university decided I was a liability, so I was essentially kicked out of school.  And then left with the bill.  Literally, thousands of dollars in financial aid, student loans, and academic scholarships for a quarter I wasn’t able to complete through no fault of my own.

What’s frustrating is how many staff made sad puppy dog eyes at me, but never did anything because they were afraid.  They were using words like “illegal” and “a violation of your civil rights” and “discrimination based on your disability,” which I feel like should’ve been a call to arms.  But the best I got was pouty faces.

Life has completely turned on ear, I have no idea what this means for me now, and I’m still in shock.

[Update 6/4/2013: Still trying to figure out the whole financial thing.  I’ve been sent a bill for this quarter and until I pay the whole thing in full the university won’t release my transcript, which makes even applying to another school out of the question until that’s figured out.

For those of you who are wondering, I will absolutely be finishing my BA, no need to worry, but my graduation date will be about a year or two farther off than originally expected.  And my diploma will have the insignia of a different university, which after all this I’m honestly not too worked up about.  One possible option at the moment is finishing the last year and a half of my BA online through my former state university’s rival school, Washington State University, which I feel like would add a bit of poetic justice to a very unfortunate, frustrating situation.  I’m all for a bit of irony.]

What to Never Say to Someone with Allergies

PeanutsAfter informing me how she’d forgotten about my peanut allergy and had almost brought peanuts to class (despite the fact that DSS has plastered the door and front of the classroom with peanut-free signs on my behalf), the student next to me proceeded to tell me a terrifying story.  A teenage girl she’d known of had died at prom as a result of a peanut allergy.

The story came to a jarringly conclusion with something to the effect of: “Her family looked frantically for her Epi-Pen and, when they couldn’t find it, decided to take her to the ER. But she was already dead.”

Holy crap! How does someone forget about their classmate’s life-threatening airborne peanut allergy when they know of someone who has died from one? Ugh.

And before you worry, yes, I always carry my Epi-Pen.  My sister Shannon, who will be the maid of honor at my August wedding, has been given the extremely important task of carrying my Benadryl and Epi-Pen on her person.  The only thing that’d be scarier than having to use my Epi-Pen at my wedding would be not having my Epi-Pen if I needed it.

I still can’t believe someone felt the need to tell me a death-by-peanuts story.  I spend my life running in fear of peanuts, not because they’ll make me feel yucky (although they certainly do a great job of that) but because I could die.  I could be anywhere—strolling through a local park, enjoying the ballet, or studying in the university library—when I hear the frightening hushed crinkle of a wrapper opening.  If it’s peanuts, I go into crisis mode and get out of there ASAP.  If my throat starts to close up and I start gagging, which almost always happens if I’m that close to peanuts, I remind myself to be calm and handle things careful and quickly because, otherwise, I could die.  Dying from peanuts is a regular, realistic nightmare; I don’t need to be reminded of it.

After the traumatic story was over, I made my way outside only to run into three separate students chowing down on a PB & J.  I almost cried.

Please, for the sake of those of us with life-threatening allergies, don’t eat peanuts in public.


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Swan Lake & Peanut Butter: When the Ballet Isn’t Safe

SwanLake2I’m so, so thankful I didn’t end up in the ER yesterday!

The original plan was to watch a friend of mine who I’ve known since I was about five-years-old marry the love of her life.  But due to the potluck nature of the reception and too much of a risk of having a run-in with peanuts or mushrooms (didn’t want to be the party guest who left in an ambulance), I had to settle for sending them happy thoughts and congratulations from elsewhere.  The tagged pics on Facebook are beginning to make their way into my feed, and the new Mr. and Mrs. look happy and adorable.

Plan B: a girls’ date to the Pacific Northwest Ballet’s production of Swan Lake.  While the main reason I wanted to go to the ballet was because I’d never seen Swan Lake performed, it seemed like a safe option for me due to the no-eating-anytime-anywhere-during-the-performance rule.  Unfortunately, the older gentleman sitting directly behind me thought this rule didn’t apply to him as he uncouthly cracked open is Tupperware and chowed down on his PB and J as the orchestra began to play the music for the second act.

I darted around in my seat to confront the offender.  “Is that PEANUTBUTTER?  I’m allergic!”

He began to close the lid while looking puzzled, but by then it was too late.  I tore out of the theater as I felt my throat beginning to close up, Mom and Shannon following close behind.  We wouldn’t be seeing Swan Lake, after all.

I took a Benadryl (the liquid kind, kicks in faster if you put them under your tough) as Mom, Shannon, and several of the employees stood with me in the lobby.  Waiting.  Waiting.  Waiting.  First one didn’t work; means it’s a serious allergy.  Second pill didn’t work; anaphylactic shock is of real concern.  Third one, taking its time; now we’re in crisis mode, and it means using the Epi-Pen followed by a call to 911 and a ride in an ambulance are the next step if things don’t improve.  And quickly.

Shannon later told me that she was so scared all she could pray was, “HELP!”

Finally, the third Benadryl hit with full force—my throat relaxed, I stopped gagging, and I felt like I was about to fall asleep standing up.  To everyone’s relief, we were able to go home instead of visiting with the doctor in the ER.  A major bummer that I still haven’t seen Swan Lake (only made it through the first act), but I felt so thankful to be going home.  Thankful to be alive.

Skipped out on the wedding to avoid peanuts but the day still ended up involving a major allergic reaction.  Drat.  Makes me feel scared to go anywhere.

As for the gentleman who couldn’t wait to eat his sandwich, I wish I could explain to him how even though some of those seemingly arbitrary rules like don’t eat in the ballet, opera, or library might seem dumb and optional, it’s those very rules that make them safe for people with food allergies.  I have to choose my outing based not where I’d most like to go but on where there won’t be food.  Food-free locations are the only places I can safely go.  So, please, just wait to eat your sandwich next time.  Cracking it open can not only ruin someone’s trip to the ballet and put their very life in danger, but when people don’t follow rules about food I can feel my world, where I can safely go, tightening in on me.  My options becoming more and more limited because you can’t wait a few minutes to eat.


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Is a Peanut Allergy a Disability?

PeanutsWhen a lot of folks hear the word “allergy” they picture someone from a Claritin commercial–sneezing, congestion, and itchy eyes.  While sneezing isn’t exactly how I want to spend my day, it’s also not life-threatening.  But a anaphylaxis is a whole different animal.        

I’m allergic to peanuts, but this isn’t your watery-eye-level allergy.  Once, while standing in line at Disneyland, the woman in front of me opened a jar of peanut butter.  I got my butt out of there as quickly as possible, took fast-acting allergies meds.  But I still had to use my Epi-Pen and call 911 to come escort me off to the ER.  And all because of a jar of peanut butter that I didn’t eat or even touch.

It Effects My Whole Life

The impact my peanut allergy has on life is not limited to vacations.  Due to displays of peanuts, most of the grocery stores are so unsafe for me that I can’t even walk in the door.  And when I want to shop at one of the “safer” stores I have to bring someone who is trained on how to operate my Epi-Pen and the importance of calling 911 to act as lookout and bodyguard; they scout out the grocery store, checking for peanuts and figuring out the safest route for me through the store, before I’m even able to venture inside.  And, once inside, they have to literally stay at my side while I figure out what kind of shampoo or veggies I want. 

I even have to bring a scout or call ahead if I want to swing by a coffee shop.  I’m unable to go to most people’s houses, due to the likeliness of running into peanut products.  Going to holiday or birthday parties aren’t options (unless I’m the one hosting it).  If I go to the movies, I have to bring Epi-Pen trained friends or family members and I have to wait until the movie has been out for a bit and go to a morning showing to make sure there will be less people.  And going to my university is the scariest of all (see Food Allergies: When College Isn’t Safe). 

In short, my peanut allergy has gotten to the point of being disabling.  It impacts where I can go, when I can go places, what I can do, and even if I can go grocery shopping by myself.  Personally, I feel like my allergy is a disability but having it “officially” count as one as far as my school is concerned is another matter.  But as of today I’m starting the processes.

Allergy Prevention

I talked with a very helpful woman at Disability Support Services (DSS) at my university about having my peanut allergy count as an official disability.  This would mean that I wouldn’t just be pleading with my classmates to not eat peanut-y products in class; it’d be required.  It also means that if someone cracked open a bag of peanuts behind me while in the middle of a test (something that’s actually happened before), I’d possibly have a better chance of being able to reschedule my test. 

But the main thing I’m looking for is allergy prevention.   And some support.  It’d be so helpful to not be at the mercy of my teacher understanding that when I say I have a life-threatening airborne peanut allergy I’m not saying it’ll make me sneeze (how seriously the teacher treats my allergy impacts how seriously the whole class treats it). 

The first step is getting my regular doctor to write a note explaining the severity of my peanut allergy and what accommodations he recommends (peanut-free classroom).  Once I get that letter, which will hopefully be very soon, I get to plead my case to DSS.  Wish me luck!


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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.

My Allergen-Free/Gluten-Free Thanksgiving

Yes, I know it’s now December and this is no longer seasonally fitting to talk about Thanksgiving.  I’d planned on showing off pictures of my Thanksgiving feast sooner, but the combination of coming down with a cold that just didn’t want to go away and attempting to get back into school mode enough to finish out the quarter meant that blogging has taken a backseat the last couple of weeks.  Thanksgiving was great though, so it at least deserves a quick mention.

My immediate family—mom (several allergies), sister (gluten-free and multiple allergies), and brother (practically vegan and also a couple of food allergies of his own)—is, needless to say, pretty gosh darn hard to feed.  And with the addition of my 10 newest food allergies, we weren’t sure how we were going to work out Thanksgiving.  Not to mention, the extended family has never really understood allergies (they’re getting better) but having a meal at their house felt like I would’ve been risking a trip to the ER.  

Thankfully, Mr. Munger’s parents invited us over for dinner.  This meant that there were more heads trying to figure out what would be Kelsey-safe and less food for any one person to make.  And it worked out great.  

What I had for dinner: turkey, cranberry sauce, peas with onions, stuffing (my future mother-in-law actually found gluten-free/dairy-free/egg-free/soy-free bread!), smashed red potatoes, sweet potatoes, pickles, and even rolls (made by yours truly).

I’ll try and get the roll and cranberry recipes to you soon because they turned out great.  And the cranberries are super easy to make! 

So how was your Thanksgiving?  Any tips for working around food allergies this holiday season or figuring out how to explain your dietary restrictions to the people you’ll be celebrating with?

Peanut Allergy Update

peanut_freeI just wanted to quickly update everyone out there in my blogging neighborhood on my peanut allergy from yesterday before I got distracted with finals.  I’m doing much, much better.  Thank you all for your kind and supportive comments. 

Yesterday was scary and after a serious allergy I always feel like my body is absolutely exhausted.  So I still feel like I’m recovering, but the allergy itself is long gone.  And there’s nothing to worry about now.  It was a close call but I’m doing just fine now. Smile

Disney: Cruising with Food Allergies & Celiac (Part 2)

As I mentioned yesterday, my future in-laws took Mr. Munger, my mom, my sister, and I all on a Disney Cruise in September.  And it was amazing because I was actually able to eat.  Not to mention, it was also just a lot of fun.

We left from Vancouver, B.C. and went down to L.A. with a two-day stop in San Francisco to see the sights.

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Because it was a Disney Cruise, there are Mickey Mouse heads tactfully and tastefully hidden everywhere.  This Mickey head is much more blatantly obvious than most.

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Our ship!  This is in Vancouver.

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While you’re not bombarded with Disney Characters, they do make guest appearances    sometimes.  This was during the “Sailing Away” party.

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My sister, Shannon, in the hot tub.  This was before we figured out how to turn it on.

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The closest thing to a ball on the ship is Pirate Night.  Everyone dresses up, and we were extra dressed up because De, my future mother-in-law, has mad skills when it comes to costumes.  Shannon and I picked out the fabric we wanted, explained how we wanted it to look, and De did the rest.

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Mr. Munger and I on deck during the pirate party.  We were dressed as pirates on a ship as it was in the ocean and there were even fireworks; it was awesome!

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Lovely San Francisco.  Mom took this nice picture of the Golden Gate Bridge.

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Food!  I ate so much wonderful, gluten-free, allergy-free food while on the ship.  After having a waitstaff who truly acted like they enjoyed taking care of me and helping me to have a great trip (rather than acting like I was an inconvenience!), I think I’m spoiled.  Very spoiled.

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Shannon eating gluten-free fries and a burger on deck.  It was beautiful but pretty windy!

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Mickey Mouse!  Such a good trip.


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