Dear Mom,
Perhaps this is the first mother’s day where I really fully understand how lucky I am to have you as my mom. Don’t get me wrong, I have always loved you and been thankful for you but not to the extent I should have. After going away to college and being apart for so long, I realized how lucky I am to have you in my life and how much I depend on you. A little more than a month ago, you were on your way home from your much-deserved vacation in Mexico. I was scheduling for classes and realized that OChem 2 had completely filled up and there was no way I could get into the class even though I needed it in order to continue on the track I am on. Frustrated and unsure of what to do, I called the one person I knew could help me—you. Of course though, you were in the air and couldn’t answer. For that brief two hours I was restless trying to figure out exactly what to do and longed to hear your voice. As soon as you called back, you made me feel better and realize that it wouldn’t be the end of the world if I had to wait a semester to take the class. You are always the first person I call with any news. You are the first person I call when something bad happens because I always know that you will help me figure out a solution. You are the first person I call when something good happens because I always know that you will continue to cheer me on. You are the first person I call when I feel sick or am frustrated or scared or just need to talk. No matter what, you always know exactly what to say. Weather you know it or not, you are my biggest role model. I look up to the way you solve problems and get things done; I try and emulate your assertiveness (especially with the insurance company). I watch the way you love, and admire the way that you and dad have been able to stay married for 20+ years despite the stress of life, which often drives people apart. I try and take after your selflessness. You are one of the most selfless people I know. I remember at Kol Emet when you used to head the Caring Committee and bring food to people who were sick or who had lost a loved one. On Shabbat, Rabbi Cove had asked who had done a mitzvah in the past week. You had been busy preparing food for someone that week and I raised my hand to tell him what you had done. You instantly pulled my hand down. You later explained to me that you didn’t do it for the recognition; you were doing it because you really did care. I hope one day I will touch as many lives as you have. I know I am not always the easiest kid to care for and that I cause a lot of stress in your life. I am so thankful that no matter how hard things have gotten you have never given up on me. You have taught me that certain people and certain goals are worth fighting for. I know that the mushy gushy hallmark card and strawberry plant that Annabelle and I gave you last night doesn’t really do justice to all you have given me as my mother. I wish I could give you the assurance that I will be ok in life so that you wouldn’t have to worry anymore. Maybe I can come close by promising to continue to do my best to stay healthy, promising to call 911 when I need it, and by promising to always have my emergency medications on me. If it is any assurance, you have set me up to live a very healthy, long and successful life. Thank you for always pushing me to follow my dreams even though I know if you could, you would stick me in a bubble and keep me home. I promise you, it is all going to be worth it! I love you lots mom! Thanks for all the sacrifices you have made for me, thanks for drying my tears and thanks for always loving me. I hope that when I become a mom (don’t worry, not any time soon) I can be just as amazing as you are. Happy Mother’s Day Mom!!! Love, Lily It isn't uncommon for people to make decisions based on their health conditions. I know plenty of kids who chose their college and future career path based on their health but to be honest that isn't me. When I was looking at colleges, my priority list was as follows:
1) Making sure the major I had was available (becoming a paramedic and then going to med school) 2) That the school was in the city 3) That the school was at least 3 hours away from home but no more than 6 hours (driving distance) 4) That the school had a good reputation 5) That there was a place for me to live Food allergies never really played into my college decision. I knew that if I chose the school for my allergies then I probably would be unhappy. Theoretically if I was choosing a school for my allergies, I would have ended up at Temple University and commuting. I would have been miserable commuting from home not to mention the fact that they don't even have my major. In fact, I committed to Pitt before I even knew where I was living and if I was getting the accommodations for my food allergies that I needed. In the end I did get the accommodations I needed and had an amazing year. I do not regret for one second my decision and that is the way I like it to be. I never want to live my life with regret. In a perfect world, I will become a pediatric emergency physician. I love helping kids and there is nothing more I enjoy than helping in emergencies and the challenge of managing an emergency. I am currently a volunteer EMT and run with my local ambulance squad when I am home. I think one of the things I love about being an EMT other than getting to help people is that it gives me a break from my own health issues and allows me to focus on the health issues of others. Hopefully in 2 years, I will have my paramedic and be on my way to med school. I have been riding 911 calls for 3 years now. I have never had issues with my own heath until today. Unfortunately today I had a bad asthma attack from someone's nasty and super dusty house. While I was in the house I started having an asthma attack and attempted my inhaler once I got outside. Luckily the call ended up just being a lift assist and we didn't actually need to take the patient to the hospital so I was able to take care of myself. When that didn't work the medic I was riding with was able to assist me with some medications via IV and a nebulizer treatment. After about an hour and a half I felt much better and was able to relax at the squad instead of having to go to the ER. The incident was enough to remind me that being an EMT or any health professional for that matter isn't going to automatically take away my health issues; they will always be there. I know that if I can't take care of myself, I am going to be absolutely no help to the patient. I have a good plan now for avoiding future attacks, which involves wearing a small allergen filter mask to help keep my asthma at bay. That being said though, as much as my parents would probably love for me to work a job that would completely keep me safe from both my asthma and my allergies, I know I would never be happy. I try to live my life without regrets because I don't ever want to look back and say, "why didn't I do this or become that?". Part of my life without regrets is following my dreams of becoming a pediatric ER physician. In the mean time though, being an EMT makes me very happy. I love getting up at 5:30 am to go into work. I love learning and I love interacting with people. I look forward to spending the rest of my life as a health care professional. I guess what I am trying to say is if there is a will there is a way. If you want something bad enough, you can find a way to make it happen, which is what I plan to do. To all you aspiring young food allergy and asthma teens, don't use your health as an excuse to keep you from following your dreams; the only person you will hurt is yourself. To all of the food allergy parents out there, we need you to help us. We not only need your financial support but your emotional support and your encouragement. We need you to tell us you believe in us and that you know we can do it. In life, we each get about 42,048,000 seconds. Some will be lucky enough to have more and unfortunately others will have less. I guess what makes life life is that no one can tell us for sure how many seconds we will get. As an EMT I have had the honor to be with some patients during their final seconds. Even though I have witnessed death and have had my own scary heath emergencies, I don't necessarily agree with the whole live your life like every day is your last day. As we all know anaphylactic reactions and asthma attacks aren't just something that we plan and it is very possible that breathing or eating the wrong thing could make any day our last day. That being said, If I lived every day like it was my last day, I feel like I would never have the motivation to follow my dreams if I knew I wasn't going to live to see them come true. What I am saying is 42,048,000 is a lot of seconds. Don't waste them! Find what you love doing and worry about making adaptions for your health needs after.
I think it can be really hard to explain what food allergies are like to people who don't live with them daily. It can be especially hard to explain the emotional toll that they take on us. Sure, food allergies only show real symptoms when we have a reaction (which for some of us is more often than others) but they effect us constantly. For those of you with out there who don't have food allergies, here is my best shot at trying to explain what living with food allergies is like. But before I do so, I want you to play a game of pac-man below. Bear with me, I promise it has a purpose.
Imagine life with food allergies is like the game of pac-man you just played. In pac-man there are 5 fundamental rules.
Now you are probably pretty lost to how a simple arcade game relates to the lives of people with food allergies. Let me explain. Just like pac-man keeps moving, our lives keep moving. Just like in pac-man, where the game revolves around food, our lives revolve around food. Most social events, family dinners and holidays all involve food which can sometimes make us feel left out or unsafe. The colored ghosts are like food allergens. If pac-man "eats" the ghosts or the ghost touches him, he will die just like if we eat or touch a food allergen we could potentially die. The ghosts move everywhere and Pac-man has no control of which way they will go. Like the ghosts, we have little control over our exposure to our allergens. The big dots are like our friends and family who help keep us safe. Just like in pac-man where they remove the threat of ghosts, our friends and family can help remove the threat of allergens and make it safe for us to eat and take advantage of life. The cherries in the game are like epinephrine; they are truly lifesavers and without it, if we are exposed to an allergen, we could die. Now I want you to play the game again. This time I want you to pretend like you have bet a million dollars on winning the game. In order to win you have to get all of the little yellow dots. Go for it, play the one million dollar game!
That was really stressful right? You were probably a little (or a lot) more focused and cautious this game. Maybe you tired harder to find the big yellow dots that would help keep you safe and tried harder to run away from the ghosts. Did you enjoy the nice break you got when the ghosts turned blue? You probably were a lot more methodical and maybe tried to plan how you would attack the game before you started. That is how we food allergic individuals approach life. We look for those who will keep us safe and we work really hard to avoid what we are allergic to. We often try to plan out our days in advanced to make sure we will be safe; being spontaneous can be really difficult and dangerous for us. We always make sure we have our medication just incase something happens because we know how serious food allergies can be. What makes us smile and helps us enjoy life is when our friends help protect us and keep us safe so that we can relax and take a short break. If you are a big yellow dot in the life of someone with food allergies I hope you realize now the true amount of impact you have on their life. Thanks for being an ally!
I have a lot of food allergies and I have learned how to be extremely careful when it comes to what I put in my mouth. Because of my extensive allergy list, I don't eat anything my parents, my grandma or I don't prepare myself; that means no restaurants, no dining halls and no prepared foods sections at the grocery store. Food allergies also pose an issue as far as medications go too. Many medications contain lactose monohydrate. While lactose is a milk sugar, it still has bits of whey and casein attached to it. I have always asked for my prescriptions to be milk free and it has never been a problem. No one had ever messed up with my medications until a few days ago. I went to the pharmacy to refill my prescription for singulair, like I do every month. This time I got a brown square pill instead of a white round pill. I didn't really question it since they always check my medications and know about my allergies. Unfortunately, the brown square pill contained enough proteins attached to the lactose to give me an anaphylactic reaction and a bad asthma attack. After about 5 minutes of taking the pill, I could tell something was wrong. I had used my auvi-q after breaking out in a rash and had used my inhaler. Because it was 11:00pm by the time I took the pill and used the auvi-q and was alone, I texted my Student EMS group who I knew were still up since we had just gotten out of a meeting. Plus, they are EMTS and I have full trust in them. Because I am an EMT too, I often a little too stoic and take a while to admit defeat and give into going to the hospital. I was lucky enough to have two friends come over to meet me and check on how I was doing. After continuing to struggle to breathe and my increased use of accessory muscles which was pointed out by one of my friends who was with me, we went to the ER. Like I said, I tend to be pretty stoic when it comes to being sick. Despite my labored breathing, I didn't want to bother Pittsburgh EMS so with the help of my friends, I walked (and piggy back rode) the five block journey to the hospital. When we arrived at the hospital I was promptly taken back to a room and treated. We didn't get out until 3:45am. This time, the walk back to my apartment seemed a lot shorter. My one friend stayed the night (which was very nice of her) and we woke up at 7:00am for a previously scheduled doctors appointment. So neither of us got much sleep The main goal of writing this post is to help insure that something like this never happens to anyone else. I am so lucky to have the support of friends who love and care about me and my well being and are willing to spend the night (well I guess morning) with me in the ER. The truth is though, this reaction was completely preventable. Luckily the ER doctor gave me a good way to check ingredients in medications so I can prevent it in the future and help others prevent it too. If you go to http://www.drugs.com/imprints.php you will go to a window that says pill identifier. You can put in the letters and numbers on your prescription, the shape and color like I have done below. Once you press search, you should get a summary of the medication like the below, along with a list of inactive ingredients. Please share this with your friends and family with food allergies so we can prevent incidents like this in the future! Also, special thanks to my friends Nick and Lekha for helping me out! You guys are the best!
If I had to rank my favorite holidays, Passover would definitely be in the top 3. I'm not really sure why I like Passover, other than it has always been a time filled with family and friends. This year, I was unable to go home for Passover so I decided to have my own seder. I knew it would have to be small since I can only sign three people into my building at a time and obviously it would have to be allergen friendly. I am so honored I got to share my traditions with my non-Jewish friends!
Wishing everyone a safe holiday season!
I am almost about done my freshman year at the University of Pittsburgh. I love Pitt; I have met so many amazing people over my first two semesters and I have made friends I know I will have for a lifetime. One of those friends is someone who I would have never expected; his name is Lenny and he is one of the facilities management staff in Ruskin Hall—the on campus apartment I live in. He is one of the sweetest people I have ever met. As the end of the semester draws to an end and summer seems just around the corner, I wanted to take a moment to write this letter to him because he has truly gone out of the way to make me home away from home a REAL home! Dear Lenny, As I write this, I have 24 days of school left until the end of my freshman year here at the University of Pittsburgh. We first met 227 days ago when I moved into Ruskin Hall. I was terrified to be honest. I was a freshman moving into an all upperclassman dorm. You would soon come to learn that I have too many anaphylactic food allergies to eat in the dining hall, so the Disability Office at Pitt had given me a single apartment in Ruskin so I could cook all my own food. My access to a kitchen and safe food was an obvious plus but I knew living in a single apartment with all upperclassmen meant I was not going to have an RA, other kids living on my floor with a similar experience, or a roommate to become best friends with. But, I soon found out though I had someone no other freshman at Pitt had—and that was you. I will forever remember you Lenny. I will remember the smile you give me before I leave for class each day, I will remember the bear hugs you give, I will always remember to tell you what I am cooking and I will always remember how you go out of the way to make my feel at home. I know that you said that you are not looking forward to the summer when we all leave and Ruskin is empty. I want you to know that I will be looking forward to the end of August when I get to return to apartment 211, I will look forward to your morning hugs, and I will look forward to another year in my home. When I come back though, I will no longer be the same nervous freshman you met 227 days ago. I will not be worried about feeling alone or isolated because I know that no mater what, you will be waiting at the bottom of the steps with open arms to give me a hug before I head to class. Luckily, I will also have a lot of friends who will be joining me in Ruskin Hall next semester and I have already told them all about you! Thanks for everything you do Lenny! Your friend, Lily A few weeks ago, I stumbled upon Allergic Butterfly's blog through Facebook. She is an awesome writer and as a high school senior, she has a lot of insight on what is it like to go through high school with food allergies. I love what she is doing and was lucky enough to have the pleasure to interview her to learn more about her blog and what inspired her to create it!
Lily: What grade are you in? What are your food allergies? Allergic Butterfly: This year, I’m a senior in high school. I was diagnosed with food allergies about five years ago. I’m allergic to milk by contact and wheat and soy by ingestion. I also have severe Oral Allergy Syndrome, which means that my body mistakes the proteins in fresh fruits and veggies for the similarly-structured proteins in the pollens that I’m allergic to. It’s scary because I can eat a fruit one day, but the next day have a reaction. Lily: What is the best part about going to high school with food allergies? Allergic Butterfly: This will sound weird, but the best part about having allergies in high school is the food. My friends like to joke about how much I can’t eat, but my packed homemade lunch is much better than the lunchroom food they eat. I also get to bring my own food to class parties and on field trips. So much better than the school’s food! Lily: What is the hardest part about going to high school with food allergies? Allergic Butterfly: Even though I love getting to choose my food, it’s hard to sit in class watching while everyone else is having a pizza party. Even when I bring my own food places, someone always [jokingly] asks if I’m sure I’m not allergic to it. I have to remind myself that they don’t understand how uncomfortable it is to be around my personal kryptonite. Lily: Tell me about your blog “The Allergic Butterfly”. What inspired the name and what made you decide to create it? Allergic Butterfly: When I was first diagnosed in the eighth grade, I didn’t know anybody else with allergies (except the “weird girl” who ate her lunch in the office because touching a table with peanut butter on it could kill her). 1 in 13 kids under the age of 18 has allergies, but most of the kids in elementary school with allergies were never in my class and had outgrown them by the time I was diagnosed. This meant I was on my own, trying to navigate allergies without abandoning all of the parties and social events I was used to. Everyone always called me the social butterfly, so I became the allergic butterfly. I found myself reading other teen’s allergy blogs a lot, and I eventually created my own based on my nickname. (And in case you were wondering, I now know about 10 kids in my school with food allergies.) Lily: If you could give teens in your situation some advice about high school what would it be? Allergic Butterfly: High school is hard, even without allergies. You have to try to balance grades, sleep, and friends. Just don’t be afraid to meet new people and try new things without fear. Spoiler alert: this is your last chance before you have to be independent and, *gasp*, responsible. Figure out who you are and what you love; the rest will follow naturally. Check out her blog here: http://allergicbutterfly.blogspot.com To get updates on her posts, like here Facebook page here: https://www.facebook.com/allergicbutterfly Yesterday my friend Reed showed me this page on Facebook. It is a page that mocked people with food allergies saying that food allergies were fake. They posted pictures of people getting allergy tested saying it was herpes, posts saying allergic people should stab Epipens in their brain, posts saying that food allergic people were making up allergies for attention and that we were all liars. After seeing the page I was outraged and I reported it. Shortly after the report to Facebook, I received the following notification: Outraged that Facebook failed to remove a page that promoted cyber bullying, I texted Reed and we decided we were going to make sure the page came down. As teenagers living in a technology filled world, we decided to do what seemed natural so we started a petition on change.org. Then, Reed and I went to the source of the problem--Facebook. We shared it on every food allergy group we could find, along with our own timelines. And within minutes we had an amazing response. My friends as well as Reed's friends started posting it to their timelines and sharing it with their friends. Within an hour we had over 250 supporters, people from all over the globe and 6 hours later, we had 1,814 supporters. Reed and I were both humbled and amazed. Around 11:30pm EST (6 hours later), the page was gone and we were able to declare victory. Pressing the victory button was one of the best feelings! The thing is though, the lessons from this page run deeper than just a victory button. I have learned that food allergy bullying isn't just limited to the school bus or a sports team--it can be found anywhere. The more important lesson though is that the food allergy community is extremely strong. Every single one of the 1,814 signatures represented a different experience with food allergies and every single one of the 1,814 signatures made a difference. If in 6 hours our petition could reach that many people, just imagine the impact we can have in a lifetime. You are never too young or too old to make a difference! Don't be afraid to use your voice and stand up for what is right because nothing will change if you don't! If you are a victim of bullying and need people who "get it" there are lots of food allergy support groups on Facebook filled with people from the food allergy community who understand. We also know that bullying can be life threatening just like food allergies. If you or someone you know is being bullied and needs help please visit this page to find some helpful resources! To view the petition, click here. Update: 2/20/15Unfortunately, as many of us were sad to learn, the "Your Allergies are Bulls#$t" page went back up Wednesday (2/18/15) around noon. Luckily though it was back down again around midnight. Within the last few days we have learned from multiple anonymous sources that the page was made by a group to teenage girls who had made it to directly target a few girls from their school. They probably never intended that the petition would gain so many signatures or that people from the food allergy community would have stood up the way they did. While the petition closed with over 2,500 signatures, many adults in the food allergy community felt as though it was a waste of time and they didn't feel like it was worth the energy to take down a page with only 200 likes. Reed and I felt that targeting one person was one too many which is why we felt that the risk of bringing them more attention was worth it to not only the girls being targeted by name that they have a whole community standing behind them but to teach the admins that bullying is never ok. Once again, thanks for the support! We hope the page is gone for good!
When I first saw this picture I laughed because it capture's my friend and I perfectly. I am like the girl and she is like the boy. I myself am allergic to a long list of things and she is allergic to chocolate. When I first heard about her allergy, I couldn't really imagine not being able to eat chocolate would be that detrimental, but I was wrong...chocolate seems to be in a lot of foods that I never would have thought about. I consider myself to be a master substituter. I can make ketchup tomato sauce and salsa without tomatoes, I can make pizza without cheese, tomato sauce or wheat crust, I can make asian ginger dressing without soy sauce, I can make eggs out of flax seed. The one thing I never was able to do though was make chocolate out of chocolate. Knowing how excited my friend gets when I make something allergen free for myself, I couldn't wait to see her expression when I make her a substitution for chocolate that was safe for her to eat. My journey to making my friend safe chocolate started with a routine trip to Whole Foods for some rice protein powder and some safe bullion cubes. As I was rounding the protein powder isle, I came upon chocolate free chocolate that was made from carob. I instantly knew I was going to buy it for my friend. The thing was though, it was just carob chips and I'm the kind of person who goes big or goes home, so I picked up some mini cupcake liners too because I was determined to make her Lily's Carob Cups (instead of Reese's Peanut Butter Cups). I quickly paid and headed back to campus. Back in my apartment, I started by melting the carob--which was easier said then done. The carob didn't really melt like normal chocolate, rather it was more of like melting hard candy and was stringy when pulled. I got it to the point though where I was able to manipulate it enough to scoop it into the little muffin pans, add some peanut butter (which I am oddly enough not allergic to) and then add some of the melted chocolate on top. They weren't Reese's quality, but they were made with love which is just as important. After they cooled, I was able to pop them out of the muffin pan, only to notice they were pretty hard. I placed them in the refrigerator to keep them from melting (not that they would have but I was just being safe) and went to bed. The next morning, I presented my friend with the container of carob cups at breakfast. I didn't get the reaction I was expecting--she didn't jump up and down or run to hug me, instead she told me she probably wasn't going to like them because of the chocolate taste. Semi-reluctantly she tried one, and ended up really liking it. I was really happy she ended up liking her cups. Today, a week later, she returned the container to me which was empty. The fact of the matter is, one allergy to something as weird as chocolate or multiple allergies they are difficult. I never forget the people who have gone out of the way to insure I have a safe substitute and I am glad I was able to be that person for my friend! |
AuthorLily Roth Is a college student with food allergies and Nancy Popkin is her mother. CategoriesArchives
December 2016
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