Friday, November 4, 2011

The Journey of Food Allergies

After 10 years of going through the food allergy process with my son, I have had an epiphany- it is an ongoing journey. It's not a curse and it's not a horrific thing that happened to our family, it's simply a journey. I say this because of how much I have learned in ten years and how much I continue to learn the more I research and the more newer and better, allergy-friendly products are produced. What's funny is that I would have never seen myself as this person when I was in High School, trying to figure out what to do with my life. I once poo-pooed a chiropractor and his wife for things that they said and believed but now, I am finding that their thoughts and ideas were not too far off of how I feel about a lot of things now. It strikes me as odd but I am also proud of myself for evolving and I don't think there are many people that can say they are proud of themselves. And I think what makes me feel the proudest is that, after realizing that I am an "evolved" person, I want to continue to evolve as much as I can for the sake of helping others to learn.

What I have found are there are stages that you go through once someone has been diagnosed with food allergies. Stage 1- there is despair and meltdowns. This is caused by your brain short-circuiting when you start to read labels, read articles, speak to Doctors, get advice and try to revamp your menu plans all on the same budget that you had previously. This is a task that everyone has to do, believes wholeheartedly that they can be a "super person" and get it all done in a 24 hour period. This is not possible for anyone. The despair is caused by the realization that there are certain foods that will either never be eaten again or not for a very, very, VERY long time. This is hard to do when something that tastes sooooo good is replaced with something that is just so-so (not always, but a lot). The despair is speaking with Doctors that misinform you and do not give you the starting information that you really should have to avoid a meltdown. You know, all of the information that tells you what you CAN eat and where you can go for help and support, not words of wisdom such as "Don't ever let him even touch a peanut". Doctors mean well and they don't do this on purpose because they have too many patients to stop and hug or sooth but more information could help in the beginning.

Which brings us to the meltdowns. This is when you have started to reads the labels on your first shopping trip to your usual supermarket. You begin to realize that other than fruits and vegetables, there is not much that you can just pluck off of the aisles and bring home to prepare. You are baffled that so many ingredients that once fed you are now going to poison you. You cannot believe that so many other people around you are filling up their grocery carts with all of this stuff that you cannot have, eating as they go and wiping their peanut-ridden fingers on the same shopping cart that you could touch next time. And then you realize that the only way you can do this safely is to prepare all or most of your foods...you know, prepare. Not unbox, not take out of the freezer and put it into a pan, PREPARE. Like, go to the store, buy all of the necessary ingredients and make it from scratch while trying to do the 500 other things that you already need to do. This does not mix well, especially with hormonal females.

Stage 2- You turn into a research expert. You begin taping Dr. Oz shows on "How to Cure Your Food Allergies" and taking notes. You begin surfing the web, going to the bookstore and trying to find other parents in the area that can offer you something, anything to make this situation easier. You call and make appointments with top-rated allergy specialists only to find out that the waiting period is a minimum of 6 months and it is not covered by your insurance. Your mind is racing at night as you try to sleep but all you can think about is How can I make a great quiche with no eggs? Your brain turns into a super-powered machine that uses your eyes to catch whatever information it can that will let you breath easier and feel calmer. This also drives your friends and family crazy because now, you cannot just go and meet them somewhere for a bite. That's impossible. You don't know the ingredients and now, those unknown ingredients could make you very sick or kill you. Plain and simple.

This will subside after a few weeks or months. Your brain will calm down a little, happy to have some information and a few decent recipes that make you feel like you are eating what you used to eat. Until you are at a function, any function and you go onto Stage 3 - Neurotic allergic person. This sounds horrible but it is NOT! This is necessary, especially when you have an allergic child. Every mom can be neurotic but if you mess with a food allergic mom, take a step back and prepare for Hell to open it's doors and your face to be melted of f. Neurotic food allergy people are called neurotic because people who do not have or understand food allergies view them as overbearing, blowing things out of proportion and being irrational. This is true of an average person who makes a big deal out of not eating carrots because they may have been sliced with the same knife that someone cut an egg with but for a person with food allergies, this small, innocent act could turn the function into the horror event of the year. Food allergic people do not like to make scenes, even if it does seem like they do sometimes. Their goal is to be as involved as possible, be social and be merry but to be very aware so as not to have to jab themselves with an Epipen and send children shrieking from the event because of the huge needle they saw going into them. This is why people and moms who have to deal with food allergies are so vigilant about what they do. It's not only to save themselves but to save other people from the event of an allergic reaction. It effects everyone involved. So next time you see a mom with their young child who is allergic to something an she is running across the room, screaming "Don't eat that!!!!!", don't make a face in horror- stay with her and calm her down. That will be appreciated.

Stage 4- Stage 4 is better! This is when you have found stores that you can purchase items from and you can eat them. You have even found coupons to offset the price of what you have to pay to stay alive and nourished. You have become aware and open. Your resources are better now and you actually have a system of what to keep in the house, how you handle eating out and you even know that social gatherings are easier because you know what to ask ahead of time. You are also not as afraid anymore. The fear of eating, touching, drinking, cross-contaminating is still there but it's not with you every single waking moment. Yes, you carry Benadryl and an Epipen everywhere but this is just part of your daily ensemble now and it's molded into you, not so noticeable as it was a few months ago. Being aware and open does have some drawbacks- because you are open, you have learned to listen to every one's advice and take what you need or not use it at all. But because of this, you still get a few people every once in awhile that try to explain to you why you really don't have a foods allergy. This is something that you will train yourself to go through- you listen, you smile, you nod and you politely excuse yourself from the conversation as fast as you can. Then, you avoid that person at the next function. You have evolved- you know that trying to explain to these people how a food could make you die is not worth your time and breath while you could be over there, actually eating something yummy!

You also know that surrounding yourself with positive, also open-minded people does help out as well. This is the stage you will be in for awhile. Stage 5- surround yourself with positive, knowledgeable people to help you continue your journey safely. This means you have weeded through all of the non-listening, number-crunching Doctors and specialists and you have found people that actually sit down, speak to you and understand that you need a little extra time to discuss your specific needs. You have found great organizations in your area to speak with, vent with, offer advice or hang out with that will not make you feel out of place or different but just a group of friends that don't try to offer you anymore bad advice..or, a cookie with nuts. You receive magazines and belong to so many, awesome websites and blogs so that you can drink your coffee and just take in more information to continue to evolve. Do you still get angry? Of course, everyone does and always will. Do you still rant and rave over people arguing over why they can't sit on a plane without peanuts? Yes but now you are stronger, more knowledgeable and you know that one person does not take up anymore of your great, positive space. You know that you are your own person and that whatever you decide to do, whatever you decide to say is completely up to you and nobody else. In the realm of what is important, does it matter if your actions or what you said was not accepted by everyone? No, because you will never be accepted by everyone all of the time, ever. You are on your journey and you know to continue, there is no time to stop, only time to continue.

5 comments:

  1. I like to think that I skipped the neurotic stage 3 :) I'm in stage 4 now - great recap by the way.
    Congrats on your top 25 Food Allergy Mom Blog nomination! I'm listed as well and it's given me an idea. I'm starting a blog hop for anyone dealing with allergies, eczema, or asthma - adults or parents helping their children. If you're interested in joining, please visit my page and post a comment asking to join. http://itchylittleworld.wordpress.com/blog-hop/

    Hopefully we can create a circle of blogs to support each other in battling these conditions.

    Thank you. I look forward to hearing from you!
    Jennifer

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  2. This post is SO true, every word of it. I'm pretty new to allergies, my first reaction was about a year ago, so I'm still figuring a lot of things out. I have latex-food allergy, and have had so many anaphylactic reactions I've lost count. I think I'm in a combination of stages, especially because I keep developing new allergies. I keep bouncing back! Thanks for blogging :)

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  3. I can so relate to all those stages. Unfortunately, it doesn't help when it is your family members that are trying to tell you that your kids can't possibly have food allergies because you have not used the epi pen on them. They think I am 'neurotic' due to my vigilance of avoiding cross-contamination with our food allergens, which are many. Luckily, I have a great allergist that I unload on and reassures me that the steps I follow to avoid any cross-contamination and an anaphylactic reaction are all valid. Hard to avoid family members...I do try to smile and walk away when the topic comes up. I find running helps! lol Seriously, I took up running at 41 years of age to help relieve the stress I was feeling building up inside me. Starting a blog has also helped...I have felt alone for so many years...I am thankful to find I am not alone and that my experiences are felt by many. Thank you! Susan H. @ The Food Allergy Chronicles

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  4. You are not alone! Anytime I can help, please know that I am just an email away.
    - Tracy

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  5. It is nice to know that there is others out there that understand what you are feeling and going through!

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