“The Happy Wheezer”

When I was an infant, my doctor nick-named me “The Happy Wheezer.” This name was invented when I was in the office for a checkup. According to my mom, I was happy and responded to the loving touches of the adults around me with smiles and giggles. But when the doctor placed the stethoscope on my chest, it became apparent that I was having severe asthma. My facial expression should have been far from smiley; my airways were unbelievably tight, and I could barely breathe. My asthma was severely affecting me, but my attitude did not reflect the pain I must have been in.

What at the time was just a situation-appropriate nickname, I have turned into a self-diagnosis. I am a chronic sufferer of the Happy Wheezer Syndrome. Having food allergies means that you often have to go without. Although this sacrifice is difficult and usually unavoidable, the attitude that you choose to reflect to others is your choice. Nearly every social event involves food, and at college that means deciding to either take the time out of your busy schedule to prepare food, or simply being willing to go without. With homework to complete, shifts at work, plans with friends, or even simply the innate desire to finally sleep after late nights studying, I frequently chose to forgo a proper meal. This means I might have eaten a partial meal at late hours after the events, or maybe I did not eat at all. Often, no one knew this except me, and if they did I reminded them that it was no big deal. I kept a smile on my face, and the Happy Wheezer Syndrome continued to prevent my friends from worrying about me.

After finals ended, my friends and I gathered at a nearby friend’s home for an end of the year dinner celebration. One of the first things I said to her mom upon arrival was a lie.

“Don’t worry about me, I already ate dinner tonight. But thank you for your offer to help me!”

The lie escaped easily from my lips after years of practice, and I delivered it with a smile. I did not have time to eat before we left, but I know that it’s not safe for me to eat food that someone else prepared. The assurance that I already ate instantly eases any obligation a host might feel to feed me, which is exactly what I want. It’s the quickest way to remove any awkwardness from the situation. And thus, the Happy Wheezer Syndrome struck again, and no one knew any better.

The Happy Wheezer Syndrome can be an active choice to maintain a positive attitude. You can complain about not being able to eat, or you can go about like you’re not hungry (even if you’re starving). The social events that involve food (aka all of them) are not about the food for me, but instead are about the the experiences that come with them. Meals are a way to deepen friendships, and I simply decide to place value on the friendships rather than the food. It’s an active choice for most, however, I’ve never thought of it as a choice, but as an instinct. It’s worked for me so far!

 

Recovery

What are you supposed to do the days and weeks following an allergic reaction?

Are you supposed to cry yourself to sleep because you feel like a powerless victim?

Are you supposed to avoid your campus dining area, the home of the dangerous cross contaminants that hospitalized you?

Are you supposed to have panic attacks that leave you hyperventilating and in tears at the very thought of stepping into that dining area again?

Are you supposed to run to the grocery store to pick up makeshift meals to feed you until your worries ease up?

Are you supposed to be unable to move, tears pooling in your eyes, as people filter unknowingly around you when you’re finally back in the dining area for the first time?

Whether I was supposed to or not, I did all of this. I had never been more scared or lost in my first year of college. There was no guidebook for the way I was feeling. No one could tell me what I was supposed to do. I had other allergic reactions before, but none that hospitalized me, none that left me with this debilitating fear. I felt like there was nothing I could do. I couldn’t avoid the dining area that caused my allergic reaction forever; it wasn’t like I could go home to a safely cooked meal like I had in the past after a reaction. If I wanted to eat, I had to go back to the place that hospitalized me.

The days following my allergic reaction, my parents took action like I’d never seen before. I know they probably felt nearly as helpless as me since they were 250 miles away. Emails were sent, phone calls were made – they wanted guarantees that something like this would never happen again. But of course, as those of us with food allergies know, a guarantee is virtually impossible. My parents persisted anyway and made sure everyone knew about what happened.

If people on the Dining Services team didn’t know who I was before, following my allergic reaction they definitely did. The President of the University (who also happened to be one of my professors that semester) asked me how I was doing before class one day. When I finally returned to the student restaurant, those that frequently prepared my food for me throughout the year approached me, even pulled me aside, and apologized for the mistake of their colleague. The managers of the student restaurant and the Resident District Manager of Dining Services invited me to meet with them to do a walk through of the student restaurant so they could understand my day to day process in the dining areas. They wanted to help me by developing changes that could make the dining services at my school safer for those with food allergies. Although everyone truly cared for my well-being from the start, this was their wake-up call.

A few days following this walk through – when I was sitting outside of Starbucks with a friend – the Resident District Manager approached me again. He asked me how I was, as nearly every employee had, but then he said something that helped me more than he could know.

“You know Allison – you have a lot of insight that our team could use. We should really consider hiring you.”

Within the month I had an interview, and I had a newfound sense of hope. By the end of March, I officially became a part of the Dining Services Team. With this new position, I realized I had been granted the ability to be a voice for everyone on my campus with food allergies. I was suddenly a part of the infrastructure that only a few weeks prior I had been terrified of. I was regaining control at a place I had previously felt almost powerless. I was no longer dwelling, but taking action, and that was the best thing I could have done for myself. Knowing the names and faces – knowing the process and participating in the background details – made all the difference for me. Maybe it’s because I know I can trust myself advocating for myself more than I can trust others attempting to advocate for me that made me felt more secure, or maybe it was the changes I was beginning to implement, but I started to feel safe again in the student restaurant.

Now, four months later, I’ve completely recovered – and I’m ready more than ever to return in the fall and continue in my position. Maybe, just maybe, I’ll never have to be afraid at school again.

It Happened.

It finally happened.

I’ve been away at college now for over 5 months. I’ve gotten into a routine at my student restaurant. I may not have much variety, but it has always been safe. Grilled Chicken, french fries, and salad. Turkey burger, french fries, and salad. Grilled chicken, gluten free pasta, and salad. Occasionally a BLT sandwich. My food is always prepared on a separate pan. It isn’t a riveting diet, but I’m fed. For me, eating a meal has never been about the food, but about the social experience, and I’ve created so many positive friendships during meals at CUA. But it finally happened. I should have predicted that it would happen eventually, but I always try to hope for the best.

February 4, 2017. 1:15pm. Turkey burger, french fries, and salad. Location: Student Restaurant.

February 4, 2017. 1:45pm. Itchy tongue. Location: Walking down the street to the school swim meet.

February 4, 2017. 1:55pm. Determined that I’m having an allergic reaction. Itchy tongue, single hive on my chest. A sense of panic comes over me, but outwardly I stay calm. Location: School swim meet.

February 4, 2017. 2:00pm. Itchy tongue, slightly itchy throat, minimal hives, ears are hot, and I’m having trouble hearing. Location: I have left the swim meet and am now walking down the sidewalk. My friend comes with me to retrieve my Benadryl, which should have been in my backpack with my Epi-pen and inhaler, but must have fallen out.

February 4, 2017. 2:10pm. Itchy tongue, slightly itchy throat, minimal hives, ears are hot, muffled hearing, sudden congestion, wheezing. I take my inhaler. Location: Sidewalk. My friend runs ahead to meet another friend who got Benadryl from my dorm room.

February 4, 2017. 2:15pm. Itchy tongue, slightly itchy throat, hives, ears are hot, muffled hearing, sudden congestion, no longer wheezing, tears have arrived. Location: Sitting on the corner of the street as I take the Benadryl.

February 4, 2017. 2:17pm. My mom is on the phone with my friend because I couldn’t talk to her through my tears. Simultaneously, my friend calls the campus health center, but they’re closed because it’s Saturday. We decide to call campus police who in turn call for an ambulance. Location: En route to my dorm room.

February 4, 2017. 2:30pm. My mom is back on the phone, jumping between me and two of my friends. My symptoms are still relatively minimal. I’m conscious and have no trouble breathing. I now have full-on hives on the back of my neck. I’m terrified at the possibility of having to use my Epi-pen for the first time. Location: Dorm room with a campus police officer as we wait for the ambulance.

February 4, 2017. 2:40pm. Ambulance has arrived. Location: Lobby of my dorm building. EMS team takes my vitals. My heart rate and blood pressure are way above normal, my hives are now running down my back and arms, and I’m starting to get the chills. I watch in awe as my friend recites all of my food allergies perfectly so EMS can write them down. I am calm, but scared. My past allergic reactions have always just resulted in me throwing up. I’ve never experienced anything like this.

February 4, 2017. 2:45pm. EMS determine that I am more than likely having an allergic reaction but I am not in critical condition. They call for a different ambulance that has the ability to take me to the hospital of my choice. They tell me that they haven’t seen a reaction like this in a long time. Location: Lobby of my dorm building. Someone has brought me a chair. I watch as people walk by my building, curious as to why there is an ambulance outside and what is happening. They turn and see me through the glass doors. Some are friends that look on in concern, but respectfully walk past, scared to interrupt the crowd of people around me.

February 4, 2017. 3:00pm. Most of my symptoms seem to be decreasing with the Benadryl starting to kick in, though I’m still a little itchy and still can’t hear well. Location: I am in transport to the hospital. This new EMS team notices that my cheeks seem to be slightly swollen and flushed.

February 4, 2017. 3:05pm. I just got off the phone with my mom, who has now offered to drive 4 hours to come to me. I tell her no; by the time she arrives my reaction will be long over. But I can hear in her voice that she’s still scared. This was definitely one of her biggest fears about sending me to college. Location: We have arrived at the hospital. I’m glad it’s so close to my campus.

At the hospital as I sit in the waiting room, a wave of exhaustion rolls over me. I don’t feel like I have any obvious symptoms left, except difficulty hearing. At around 4:00pm a nurse checks my vitals. My heart rate and blood pressure are back to normal. They tell me while I wait for a doctor that if I think my symptoms are starting to reappear in the common “Second Wave” to go to the front desk immediately. Fortunately, that never happens. Around 4:30pm I am given a room. When I finally see a doctor around 5:30pm, he examines the remnants of my no-longer-itchy hives, determines that my throat is not swollen, and that the only issue with my ears is a build up of ear wax that probably occurred from swelling. He tells me that it was definitely an allergic reaction but that I took all the right steps. I am given a few prescriptions and told that I’m safe to return to campus, but if any symptoms start to reappear at all, at any point, I should return to them immediately. Fortunately, that doesn’t happen either.

Now I know all of you who have experience with food allergies might be asking, “Why didn’t you use your Epi-pen?” I can tell you why: I was scared. I’ve never had to use it before. But more importantly than that, I was quickly under the surveillance of a campus police officer trained to handle these situations, and soon after that, EMS arrived. They told me that if my symptoms did not recede by the time I arrived at the hospital, the doctors there might have to inject me. But my symptoms did go away. I was surrounded by trained adults that I trusted, and I never felt that I reached the point where an Epi-pen was necessary. However, I can predict that if I didn’t get that Benadryl in my system so quickly, there’s a very good chance that I would have had to use it. But I fully believe that everyone followed the right protocol yesterday. The most important thing is that I am safe and feel better.

February 4, 2017. I had my first allergic reaction at college. I spent the rest of my night in bed as people came in and out of my room to check up on me. I feel blessed that I have such amazing friends that not only helped me when I needed it most but took care of the situation calmly.

CommonApp College Essay

I have now completed my first full week of college and would love to share with all of you the essay I wrote for my college applications…enjoy!

Prompt: Some students have a background, identity, interest, or talent that is so meaningful they believe their application would be incomplete without it. If this sounds like you, then please share your story.

I have a lot in common with the peanut. On the outside I have a tough shell, but on the inside, I have more of a soft crunch. Sometimes I can be a little salty, but more often I’m sweet. Plus, I’m really small – the five feet tall kind of small. Although I have similarities with the peanut, paradoxically enough, I can’t eat it. I even needed multiple people to describe  the taste of a peanut to me for that characterization above. It’s not that I don’t like it, or am a super picky eater; I’m severely allergic to it, and have been since birth. It’s not just peanuts though. Ask me what I’m allergic to and I’ll respond with a well-rehearsed

“milkeggsbeefpeanutslambsesamecarrotsstrawberriesandnuts.”

I understand that this is a jaw dropping list. In a small town like mine though, it’s no surprise that I am the only person with nine food allergies. However, food allergies are only isolating if you allow them to be. Through my food allergies, I have learned that I am a part of something larger than myself. I am one of 250 million people, one of 15 million Americans, and one of 1.2 million American youth. I may be one person with nine food allergies, but I am one person who can make a difference.

Just as peanuts are grown in clusters and sold together in cans, I want to be united with those that are like me. In August of 2012, I began my journey to achieving this connection when I created my blog “Allergy Alli” as my Girl Scout Silver award and became an advocate for those with food allergies. With every post published and every page view tracked, my digital presence increased, although it was mainly with an unintended audience. I originally aimed to reach out to my peers, but quickly discovered that I gained more interest from the parents of children with food allergies. I often receive messages, emails, and comments from these parents that are filled with encouragement and gratitude for sharing my experiences. Through my blog, these parents gain a better understanding of their children’s disease and what the future potentially holds for them.

As the page views continued to mount and the “likes” on my corresponding Facebook page continued to grow, I took another step in advocacy. I applied and was accepted into the Food Allergy Research and Education’s Teen Advisory Group, also known as TAG. I am now one of 40 members out of a multitude of applicants who applied nationwide, which has given me another opportunity to connect and learn with other allergic teens. The more I wrote, commented, and connected with this group and my followers, the more I learned that the power in my words positively impacts others and makes a difference in their lives.

Just as peanuts take on many different forms, there are more sides to me than just “The Girl with Food Allergies.” I am a scholar, performer, musician, photographer, cheerleader… I can just as easily be found curled up reading Les Misérables as I can be found singing “I Dreamed a Dream.” I almost always have a camera dangling from my neck or my pompoms shaking in my hands. It’s these characteristics that I tend to write about on my blog because it’s never been about my food allergies, but how I live with them. My food allergies are a large and important part of who I am, but they are not everything I am.

When I was younger, I hated being different and set apart from everyone else. I’ve come to learn, however, that food allergies are what you make them. Now, I don’t mind being different if it means I can make a difference. The best part is, I have many more years ahead of me, and I’ve only just cracked the shell.

Looking Back at Where We Started – Advice for New FA Parents

Many people come to my page looking for food allergy advice from a teenager’s perspective. But it was through my formative years, when I was unable to make safe food decisions on my own, that I truly learned how to live with food allergies (shout out to my amazing parents!). However, after living so long with food allergies as a part of our lives, whether they are yours or a loved ones’, we sometimes forget what it took to get where we are today – all of the ups and downs, the sleepless nights, the tears, the triumphs…

So what I’m asking you is this: what is your best advice for new parents of children with food allergies? How have you helped your child better understand what to do? How do you cope when it gets tough and scary?

Whether you have a “To Do” or “Not To Do,” please share in the comments below, contact me through my Facebook page, or email me at allergyalli@gmail.com! I look forward to hearing what everyone has to share and I hope that we can provide some helpful insight to those new FA Parents out there that are nervous.

Thank you all in advance! 

~Alli

How My Food Allergies Affected My College Decision

I am about to deliver a statement that might surprise some people: a school’s dining services DID NOT affect my college decision. From the beginning of my college search, I decided that I would not let my food allergies restrict me in this way. I knew I wanted to choose a college that made me happy, and for me, that means a school with an accredited architecture program, a sense of community on campus, and a value placed on community service; I wanted a place to call home – not just my school. Therefore, I decided to not place any value on the dining services, because I knew that no matter where I choose to attend, I would be able to find something to eat.

When it came down to it, something that did affect my decision because of my allergies was the distance. By mid-April, I had narrowed it down to two schools: The Catholic University of America in Washington DC and the University of Notre Dame in South Bend Indiana. These two schools both have an outstanding architecture program, an amazing sense of community, and great opportunities for community service. In the end, the largest difference for me between the two is the distance – by car, CUA is 4 hours away and ND is 10 hours away. My mom kept reiterating to me that if I ever have an allergic reaction and am hospitalized, it would be a lot easier for them to travel 4 hours than 10, and we both loved that all the family I have in the Maryland/DC/Virginia area would be able to help me if I ever need it. At Notre Dame, I would be isolated and alone in any emergency situation, without any family nearby.

Although location was not the only factor in my final decision, it was enough that it made an impact. College is a completely new experience, and I will have to learn how to live with my food allergies in a completely different environment. This means that there is a larger chance that I might make mistakes, and I know its worth having access to family that I know and trust if I ever need it. I know CUA was the right choice.

~Alli

My College Decision and Their Dining Services

I am excited to announce that I will be attending The Catholic University of America as a member of the Class of 2020! I look forward to studying architecture in the School of Architecture and Planning and am already counting down the days until I move in. Although it’s well past May 1st (National College Decision Day), I’ve waited until today to share this with you because I just spoke with the Resident District Manager from CUA’s Dining Services a few days ago- which is what I really want to share.

When I visited Catholic University for an accepted students day, I did not have the opportunity to speak with dining services on campus (they were just too busy with so many visitors), but I was impressed with the lunch they served us; they had different “lunch boxes” that came with an apple, chips, cookies, and your choice of sandwich – ham, turkey, grilled chicken, or PB&J. They hung a sign near these boxes, though, that said “If you would like a nut, dairy, and gluten free option, please ask a staff member,” and upon my request, they brought out a different box. But instead of a sandwich, it contained a grilled chicken salad, and instead of the chocolate chip cookies, it had a package of Lucy’s Sugar Cookies (a brand that is known for being allergy friendly and all natural). Although it was a simple gesture, I was very impressed.

The conversation I had today with the manager of Catholic’s dining services only further impressed me. When I first emailed him with a run down of my food allergies and a request for a phone call, he was quick to respond. My mom and I had the opportunity to ask him plenty of questions, and he gave us a break down of how the dining hall worked. Here’s the gist of what he told me:

  • He will set up a meeting with the staff members when I first get on campus so I can personally introduce myself and inform them about my allergies
    • He said it’s important that I’m vocal and not shy so the staff members will start to recognize me over the first few weeks (I told him this would definitely not be a problem)
  • They have a four week cycle without any repetition within those four weeks, so although the first cycle will be the hardest as I’m learning what I can and can’t eat, it will get easier with time
    • Once they have the menu for this cycle in August, they will send it out to me so I have a general idea of what I will and won’t be able to eat
  • They have stations that are “Made to Order” so I can watch the staff member make my food in a separate allergen-free area of the station.
  • Most importantly, he said that he and the dining staff are willing to help in every way possible to keep me safe. They take pride in their food services and are trained to handle allergens and have done so in the past, and love to hear feedback if there’s ever anything I feel they could do better.

Although I was confident about my decision to attend Catholic before, I now have even more faith in my decision. I look forward to sharing my future endeavors at CUA and how I got to this point in the college process.

Only 105 days until move in… go Cardinals!

~Alli