Education- The Main Goal

"Waaait, so you are telling me that we use an oil that you can't eat, but they use an oil that you can eat?  So you can't eat here, but you can eat there?  I don't really understand."  This is what I deal with.  People who just can not comprehend the fact that there are foods that people just can't eat.  It is not a choice, it is a fact.  If I eat the food used with a nut oil I will have an anaphylactic reaction.  I didn't make this up.  I didn't pretend so that I didn't have to eat something.  But some people just don't get it! 

To continue this story, the man who was speaking to me was a restaurant manager, at a well-known, highly recommended restaurant in the town where I went to college.  I went out to eat with my friend that night after moving back in for graduate school.  Over the years, I had been to this restaurant many times before while I was living there.  The only item on the menu I could eat was a grilled chicken sandwich with no fries on the side.  I told them my allergies, as well as giving them my chef card.  I prefaced it by saying that I had been there many times before without a problem, but I just wanted to make sure nothing had changed (another great topic- never assume the food is the same at a restaurant...it is always better to double check).  

The waitress came back a few minutes later and said, "I'm sorry.  I asked the chef and showed him your card, but we can't serve you.  We use a nut oil in some of our foods."  I asked her if they used in on the chicken.  "Well, they won't serve you.  I'm not sure, but you can't eat here."  I looked back at the menu, "Do you know if there is a plain salad I could get?  We already have our drinks and everything."  The waitress said she would go check.  She came back a minute later, "No, I'm sorry, but there is nothing you can eat here."  Of course she had already put my friend's order through, and we already had drinks.  My friend suggested that I go get a slice of pizza across the street and bring it back, considering they wouldn't serve me, and he was already getting food.  

I went across the street, and very discreetly walked back into the restaurant with my pizza, but I was stopped by the hostess.  "You can't bring that pizza in here," she said.  I started to explain to her that they couldn't serve me, and that my friend had food. Then I started to walk to the table, but she came back over to me as I was walking and said in a very confrontational tone, "YOU CAN'T BRING THAT IN HERE!"  I said back to her, "who is it bothering?  Is there a manager I can speak with?"  The girl said, "The manager is the one who told me to tell you to leave."  I looked at my friend.  I told him I would be sitting outside eating.  Then left to eat my pizza.  Five minutes later my friend came out with his food to go, and sat with me.  I felt really bad.  We had left our drinks, without even drinking them, to sit outside in the cool, windy evening air and eat in the dark.  Fabulous!   

After I finished my pizza, took a few breaths, and vented my frustration to my friend, I decided I should go speak to the manager in the restaurant.  I went back inside and asked for the manager.  The shifts must have changed, because a man was now the manager on duty, and came over to speak to me.  I explained the turn of events, and why I brought pizza in to eat.  That is when the manager said, "Waaait, so you are telling me we use an oil you can't eat, but they (the pizza place) use an oil that you can eat?  So you can't eat here, but you can eat there?  I don't really understand."  If there was a scale for my frustration level at this point, it would have been bordering between at least an eight, maybe a nine out of ten.  I decided to try to explain again, to educate this restaurant manager, who told me he had never heard of this before!   I couldn't believe it!  After another failed attempt at explaining food allergies, and him trying to pretend he was interested, I left.  

I do believe that education is what is most important.  It can be so difficult sometimes to get through to people.  Some people, no matter how many times you explain it, will still not truly understand.  We need to find ways to educate people who don't understand though.  That is the best way to help people with food allergies.  If you educate the people around you, around your children, and at school, then that is the best tool.  I feel so lucky that my parents realized this, sent me to school, let me explore, travel, go to camp, and try to live a normal life, even with my allergies.  It can be done!  I know, because I was one of those kids, and I had those parents who knew how to give me the tools to let me live like other kids.  Thank you mom and dad!   

Even Mr. Comprehender Doesn't Always Comprehend!

Even in my twenties, parties can still be a challenge!  Knowing this, I usually try to bring food I can eat, like brownies (nut free of course)!  I also eat ahead of time, because I very rarely eat other food at parties.  Even if my friends can tell me what is in a dish, I usually don't trust eating it because of cross contamination.

Over the weekend, I went out to a party with the guy I am dating.  Plenty of food was at the party, including a bowl of peanuts sitting on one of the coffee tables.  There were platters of veggies and dip and chips and salsa, which are okay for me to eat usually, along with many other dishes.  Once I saw the peanuts though, I knew it was best to just wait to eat at home later that night.  I was out in the city all afternoon, so I wasn't prepared like I usually am.  I ate a few of my brownies before people started touching them, but I was hungry for something more healthy and substantial!  Sometimes I will put food aside ahead of time if I know I can eat something, or make sure I am the first one to serve myself, depending on the situation.  When we arrived at the party, there were already people there eating, so it wasn't worth taking any risks.  

The guy I am dating was eating all night at the party.  He didn't eat any peanuts, or anything that I was definitely allergic to, but he did eat food we weren't sure about the ingredients.  When he brought me home later in the evening, I was starving and wanted to make some Annie's mac and cheese.  I went to go change because it was snowing pretty hard outside, and the bottom of my pants were wet from dragging in the snow.  When I came back downstairs, the Annie's were ready, but I saw him take the spoon and have a bite, then put it back in the pot.  He listed off what he had to eat and drink since the party, and I decided it was okay, but it still made me feel a little frustrated and nervous to eat the Annie's.  I know there wasn't a high likelihood that I would have a reaction from him sharing the spoon, but I still was surprised he had done that.  We hadn't been to his apartment, so he hadn't brushed his teeth or chewed any gum.  He did eat and drink "safe" foods after the party, so I was probably over reacting a bit.  It is hard sometimes though, especially if it is late at night, in a snow storm, where you know if there is an emergency, it is not the easiest time to get help.  

For someone who I thought truly was a "comprehender," I was surprised by this action.  It shows that you always have to be careful, ask questions, and trust your gut feeling about the situation.  Even people who "get it," can sometimes get a little mixed up, or not go about something the same way you would.  It reminds me of something that happened when I was little.  

My family spent many weekends when I was little, driving to visit our close friends a few hours away.  These friends were always really amazing about my allergies.  They would try to make sure there was always safe food for me, and knew how to check the ingredients to make sure I could eat it.  One weekend when we went to visit, Leslie, my best friend's mom, was so excited she had found potato chips that she thought I could eat because they didn't have peanut oil.  At this time almost every chip had peanut oil!  In being focused on the smaller picture of no peanut oil though, she missed the bigger picture that I can't eat potato!  

This story emphasizes the importance of empowering your kids to read labels and trust themselves.  Even people who do "get it," can slip up from time to time, and the best way I was taught to prevent this from happening, is to always double, even triple check ingredients, ask questions, and teach your kids to read and understand their allergies.

One mom who I spoke with, interviewed, and was extremely helpful when I was doing my independent study in college, wrote me an e-mail yesterday.  In the e-mail, she said that she always remembers my advice of empowering your kids to handle it themselves from an early age.  I am so glad this advise helped her, and I hope it helps others.  My parents showed me how to be responsible for my allergies at a very young age.  They would bring me to the grocery store and read ingredients with me.  They would make me responsible for always bringing and remembering my Epi and knowing what to do if I was having a reaction.  I wore a Medic Alert bracelet since I can ever remember.      I was looking through old pictures from when I was little, and my bracelet is on in every one (just like in this photo of my dad and I at a wedding)!  It is just one other way of keeping myself safe, and something I continue to wear today.  There are so many ways to empower your children, and by teaching them responsibility and ways to keep themselves safe, you will be truly helping them out, especially in the long run!  I definitely believe that I am a more responsible person because of my allergies.  This is something positive I possess from this experience, along with some other crucial benefits, which is a topic for another blog!

New Job, New people, New Concerns

I started at two new jobs recently.  I try to usually ease in with my allergies.  I don't want to come off too intense or overly concerned, especially since I'm not either one.  I was pushed into telling my new colleagues about them though at my full time job in an elementary school, when I realized nuts were everywhere.  Many of the people in the room I am based out of, had started a diet for the new year.  In this diet, nuts are a big piece of what you are allowed to eat.  Once I saw everyone eating the almonds, I was concerned.  I told them about my allergies, and explained that they could still eat them, but if they were touching the doors, or papers or anything I also touch, that I would really appreciate them washing their hands.

That afternoon my lips felt a little puffy.  I decided it was probably from touching something that somebody who was eating nuts had touched, then touching my face.  I took Benedryl and was fine.  It did make me even more mindful of washing my hands more frequently, and speaking up about my allergies again if I needed to.  The people I am working with don't seem very knowledgeable about allergies.  I will try to educate them when opportunities present themselves.  I'm surprised that in this school environment, these teachers seem so naive and unaware.    

I know that schools are a big concern to parents.  When I was in elementary school, there were no signs on the door, or pictures of me hanging in the lunch room.  There were no "allergy-free" tables, rooms, or zones.  I was the only one in any of the three different school districts that I went to that had anaphylactic allergies!  Of course my parents were huge advocates for me, but being the only one, made it even more important to know how to take care of myself!  

There is a lot more to say on this topic, and I will continue later...  

How I Chose My Best Friend & My Favorite Cereal

It's the first day of pre-school.  Over in the corner I see a pretty girl with dark brown hair, wearing a blue Alice in Wonderland dress, and decide she will be my new best friend.  I am four.    

It's funny how you make decisions when you're a child.  I picked my best friend since I was in pre-school, based on my fondness for Alice in Wonderland.  That friend though, and her family, have been a part of my extended family ever since that first day of school.  They learned and knew my allergies inside and out.  They, among a few other families, who I also consider part of my extended family, were people I felt I could trust with my allergies growing up.  These were people who knew how to use the Epi, understood I couldn't eat any foods or have cross contamination.  These people "got it."  They were comprehenders.  They understood and helped me.  These people are the ones who made me feel like I was just a normal kid, because when I was little, I felt like I could trust them with my allergies.  I didn't have to worry that they didn't understand, or would feed me something I couldn't eat.  

Having friends and people like that for your child is HUGE!!!  It is one of the most important things my parents did for me, because those people never made me feel singled out.  I was singled out in school, in camp, and in just about any other group activity or program, but when I was at my neighbors, or at my friend's, I never felt singled out.  

My favorite cereal was introduced to me by my best friend's mom.  I can still picture that day.  Sara and I were outside playing on the swing-set in her yard.  It was after school, and her mom came out and called us on to the porch.  In her hand was a box of Apple Cinnamon Cheerios.  I remember being amazed I could eat them!  To me, all those pieces of apple cinnamon, stuck on the cheerios, looked like nuts.  I remember reading the ingredients with Leslie, Sara's mom.  There were no nuts!  Even to this day, they are still a favorite!

I just want to reiterate the importance of finding friends you can trust with allergies.  Now, in my twenties, I trust myself when it comes to my allergies.  I recognize the importance though, of finding people for children to trust.  People who truly "get it," are hard to find, but important to recognize, because those are the people who can make a child with allergies feel like a normal kid.

Hostess Cupcakes & Birthday Parties

I was driving down the East Coast from Massachusetts to Florida and back last week.  In the beginning of the drive, I had nice, safe, healthy food packed.  As the drive wore on, I started getting tired and desperate for snacks.  At one of the rest stops in Virginia, I went in, and there on a rack were Hostess cupcakes.  I can't remember the last time I had a Hostess cupcake, and decided that would be my unhealthy snack.  

As I opened the Hostess cupcake package and took my first bite, memories of birthday parties when I was a child flowed back.  In my hands, placed on top of the birthday present for my friends, there was always a pack of Hostess cupcakes.  By doing this, I would always have my own safe cake to eat at parties.  I can picture walking in to a birthday party with my dad.  I was five years old, dressed in this green, sweatshirt type dress.  We walked in, holding a present, two epi-pens with Benedryl in a plastic bag, and a pack of Hostess cupcakes.  My dad walked over to the parent of the child whose birthday it was, showed them my medicine and the Hostess cupcakes, as well as making sure I knew the parent, and where my medicine and cupcakes were being kept.  I would then go play with my friends, like every other child.  

When it came time for cake, and everyone would sit down at the tables with plastic or cray-paper table cloths, I would go get my cupcakes, place them on the paper plate in front of me, wait for everyone to get their cake, then I would eat the cupcakes.  Sometimes I felt jealous of the other kids. I was always the only one with allergies.  Everyone else could eat the cake with colored sprinkles, while I ate the Hostess cupcakes.  

I never fought it.  I always knew what I needed to do to keep myself safe.  This understanding of was mostly due to my parents.  From a very young age they were both showing and telling me about my allergies.  I understood and listened to them, because I knew I had to.  

Sometimes I felt like I stood out, which is something I have felt my entire life.  That is certainly not to say that standing out is always a bad feeling. Sometimes it can be nice to have the attention, but other times it can feel isolating or lonely.  This is why, in a way, that the growing allergies among children, help kids with allergies feel less lonely, because now children know others with allergies.  I was 16 years old before I met someone with severe allergies like mine.  This means I went through the majority of my growing up feeling like I was the only one who had these crazy allergies!  The only one who had their own "special" food.  The only one who had to ask about the ingredients in anything I put in my mouth.  The only one who was often singled out accidentally in school to go get my special snacks or come up and check ingredients. I knew (sort of) that other kids existed with allergies, but I had no proof.  I had never met them!

This is an important topic that I will continue to discuss...

Nuts are now in tissues??? Come on...

I saw a commercial the other day for Puffs tissues.  In the commercial they advertise that they are moisturizing with Aloe and ______.  Where else do they get this amazing moisture?  The answer is Shea Butter! Yes, shea butter, which comes from shea nut, a tree nut.  Here is the link to watch the commerial: http://www.puffs.com/en_US/games-commercials/tv-commercial.shtml.

I always read ingredients in any product I use, including shampoos, conditioners, lotions, toothpaste, make-up, etc.  It seems crazy to me though that a company would put tree nut in their tissues!  I know people don't eat tissues, but they certainly put them against their face.  What stops someone from breaking out in hives if they are allergic to tree nuts and use a shea butter Puff tissue?  Tissues are everywhere; in stores, doctors offices, schools.  I can't say that I usually look for tissue ingredients.  If I am out somewhere and I need a tissue, I usually just take one.  Not until I saw this commercial, would I have thought that I now need to be careful of the kinds of tissues I use. Who would have guessed that a company would be naive enough to put shea butter in their tissues?  I think this is rather outrageous...!

Along this same topic, let's discuss hair salons.  When I go to the hair dresser (which is more often than not a different place each time, depending on where I am living), I always read the ingredients in everything.  The first words that come out of my mouth as soon as I am taken towards the sink is, "I have a nut allergy.  Can I please read the ingredients in the shampoo and conditioner that you will be using."  Usually the conditioner will have 'sweet almond oil' or 'shea' in it.  I then have the woman who is washing my hair, scouring the shelves in search of a nut free product to use!  Often times, after my hair is cut, the hair dresser will go to spray something or put some sort of product in.  I always specify beforehand that I don't want anything put in my hair, or if they want to, I need to read the ingredients first.  

I'm still astounded by these tissues.  The lesson in this is to read the ingredients, no matter what it is!  Who would have thought... tissues!

    

New Year- New Stories

Happy New Year!!  I'm excited to write consistently on this blog, as one of my resolutions this year!  I am hopeful that I will start to build a readership of parents who find this blog helpful.  I would love to hear feedback and comments as well! 

Yay to 2009!  Happy New Year!