Empathizing Like Peter Pan (Subtitle: Allergies are Real)

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If someone tells you she has cancer, do you believe her? Even if you’ve never had cancer yourself?

If someone tells you he is an alcoholic, do you believe him? Even if you are able to drink alcohol yourself and not become addicted?

If someone tells you she has postpartum depression, do you believe her? Even if you felt nothing but pure elation when you brought home your own bundle of joy?

I bet you answered “yes” to all of the above. Thankfully, diseases, alcoholism, addiction, emotional turmoil, and mental illness have fared well amongst those in the human race with empathy. We may not fully understand or have experienced these issues ourselves, yet we can still believe people and the trials and tribulations that come with these diagnoses. We empathize.

In my experience, for some reason, allergies do not always evoke the same. I can recall countless experiences in which I was made to feel like my allergies were a nuisance, at best, and a figment of my imagination, at worst.

Cue the: Can’t you just ignore the shrimp cocktail on that platter and get back to our conversation? Or Why would that make you sick when it makes no one else I’ve ever known sick?

When I was in my twenties, I was on a plane of a commercial flyer that had a peanut policy of “three rows back and three rows front.” The flight attendant came over the loud speaker before take off and publicly shamed, I mean announced, that a passenger in row 24 had a peanut allergy and rows 21-27 would be served only pretzels. The announcement was met with “oh no”s and “how disappointing”s and looks down row 24 that would make The Plastics from Mean Girls proud. I felt myself blush as it was my allergy that was keeping these people from their salty treat they so clearly desperately wanted. Any self-consciousness faded fast, though, and was quickly replaced by fear. A look front and back showed me that rows 20 and 28 were still pretty darn close to me and since my peanut allergy is airborne, and there is no circulation of fresh air, we might still have a problem. I can usually leave a situation if it causes an issue for me, but I was stuck on a flying vessel thousands of feet in the air. With people who sneered at me. How would this crowd respond to me going into anaphylactic shock? More groans and disappointments as I was further inconveniencing them? Would they continue to roll their eyes rather than make room so I could grab my Epi-Pens and administer them to myself? Or would visible lip swelling and difficulty breathing and hives transform my fellow flyers into believers? Hopefully it wouldn’t require this scene (that fortunately wasn’t realized), but for some, it does take personally witnessing an allergic episode to believe.

After W was diagnosed with FPIES, I was met with more disbelief, especially because the condition is so rare. I had oodles of people tell me in so many words that his condition didn’t exist. Or at least it didn’t used to until everyone starting “dreaming up all this allergy stuff”. I was able to let it go as I knew it was real, as did his doctors. [In just about every specialty there is, I might add.]

After his diagnosis, I also connected with a fellow mom and former colleague who navigated allergies with a child herself. I remember her telling me about how people at school, soccer, music class, her neighborhood, pretty much anywhere they went struggled to grasp the severity of her son’s allergies. She would tell them, write it on his forms, and explain it repeatedly, yet the dots just weren’t connecting. So when I asked how she explained his allergies so that people understood, she told me that she would share the specific example of dairy. “If I put creamer into my morning cup of coffee, I can’t give him a kiss goodbye on the cheek as he leaves for school without him going into shock.” What struck me was not how horrific that she had to switch to being a black coffee drinker just to not jeopardize her son’s life, but that she had to go into the details for people to believe. If she had been telling these folks that her son had epilepsy, would they ask “oh, are you sure? how serious? how many seizures?” before they believed? Doubtful.

So the point, for those of us striving to live joyfully with allergies, is simply to encourage empathy when learning about allergies that haven’t personally been experienced. For allergies are not a nuisance. They are not a way to gain attention. Nor a way to be high-maintenance for the sake of being high-maintenance. Severe food allergies are neither a dietary fad nor a personal preference. Nor a means to inconvenience your fellow travelers or child’s classmate’s parents. A latex allergy is not a ploy to ruin someone else’s birthday party.

Allergies are real. They can be life-threatening. They can be caused by something you’ve never even heard of, or something you’ve been exposed to your whole life. The research is growing. Hopefully, widespread empathy will follow suit.

Until then, let’s all channel our inner Peter Pan: I do believe, I do, I do.

Resources for a Healthy Lifestyle

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Today’s post is exciting as it is the first hots&olives Q&A! I’ve asked fitness and nutrition guru Kelsey Reese, who also navigates dairy and gluten allergies, to share her favorite online resources for maintaining a healthy lifestyle.

MH: Kelsey, where do you go for tips online for cooking allergen-free?

KR: Cooking is one of my favorite activities, especially on the weekend when I can spend more time preparing dishes. I enjoy experimenting with new flavors and I love knowing all of the ingredients that go into what I make, unlike when I eat out and always have questions about the menu. I try to eat a plant-based diet that balances healthy fats (an avocado a day keeps the doctor away!), protein, and carbs. One of my favorite food blogs is “Oh She Glows,” where most of the recipes are gluten-free and all are dairy-free. I especially love her soups and stews!

MH: How do you stay up-to-date on fitness and training?

KR: Everyday it feels like there is a new fitness trend! It’s definitely tough to keep up but as a former personal trainer, I’ve learned that the most important part of exercise is finding something you love and doing it consistently (a 15 minute workout is better than none). For me, that involves a mixture of strength training and cardio, including running outside in the summer, the arc-trainer/elliptical in the winter or playing squash. These days, I get my strength training on the megaformer, which has really improved my core strength. But when I’m at the gym creating my own exercise flows I get inspiration from the fitness section on the Well+Good blog. They have great training tips from celebrity trainers like Tracy Anderson, Blake Lively’s trainer and Gigi Hadid’s boxing coach.

MH: What is your go-to resource for healthy living?

KR: My all-time favorite wellness blog is “MindBodyGreen.” I could read their articles all day! The posts they share are incredibly positive, uplifting, and motivating. They are my one top shop blog for inspiration and advice on creating a more healthy lifestyle.

MH: Thank you, Kelsey, for sharing your inspiration with hots&olives readers!

Paying Medical Bills as Simply as Possible

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I am a firm believer that everything happens for a reason.

When I graduated from college, I spent several months job searching for an entry level position in the arts. A kind family member allowed me to work in his office part time while I searched. He was an insurance broker and I handled claims and additional administrative customer service tasks for his clients. In short, I spent hours on the phone with healthcare providers. Not looking at paintings.

While I was frustrated to not be gainfully employed in the arts, I should have been bubbling over with gratitude. In those few months, I learned the necessary skills for organizing, communicating, understanding, and generally dealing with medical claims. I had no idea how much this would come in handy in the subsequent years of my life.

The complexity of both mine and W’s allergies means that we have stepped foot in too many doctors’ offices to count and our subsequent bills are, simply put, not the simplest. Some specialists are in-network, others are not. Some labs and procedures count towards our deductible, others do not. Some hypoallergenic formulas are covered, others are only processed if they are a certain weight or poundage (that is actually true). Some food introductions need an additional authorization, some need the official seal of the Governor (that is not actually true, though it doesn’t feel too far off).

To navigate as simply as possible (drawing on my healthcare customer service days), I stick to a strict system for paying bills.

As a first step, I collect:

-Oodles of patience
-A writing utensil
-A stapler
-A telephone
-Folders marked Explanations of Benefits, Bills, and Paid Medical Bills

The second step is to marry Explanation of Benefits documents (EOB) and bills. After I receive both an EOB (sent by the health insurance company) and a corresponding bill (sent by the healthcare provider), I make sure they align. For example, if the EOB says the immunologist appointment is covered by insurance except for $34, I ensure the bill from the immunologist is $34.

The third step becomes sort of like “choose your own adventure.” If the EOB and bill amounts are the same, I pick up the phone and pay the bill. I pay via phone and speak to someone in the billing office instead of sending a check so that I have a confirmation number or authorization code immediately. This limits the room for error such as checks lost in the mail, an administrator claiming it wasn’t paid, etc. I then write the confirmation number down on the bill, staple the bill to the EOB, and file it in a folder labeled “paid medical bills” and the year.

If the amounts on the EOB and bill are not the same, I call insurance customer service. A friendly yet generally annoyed agent then tells me – while I stay cool, calm, and collected as that is always best – that they will reprocess / put it in a queue / whatever they need to do to determine the reasoning for the discrepancy. I always ask for an anticipated time frame for an answer and write that date, as well as the date of our phone call and the name of the representative with whom I spoke, directly onto the EOB. (Some unfortunate lost Post It notes led to writing all related notes directly on the paper.)

Afterwards, I immediately call the billing office of the healthcare provider to speak to a different friendly yet generally annoyed individual and request that their office put a hold on the bill until the date insurance provided. This way, they will not send a second bill. I then patiently wait for insurance to provide their answer, or follow up if I have yet to hear back by the given date. (Here is where it helps to have the name of the representative.) Once the insurance folks and I connect, I take notes on the claim status per the representative and then get to work chasing down the Gov’s signature or whatever I must do to make sure all discrepancies are corrected. And once they are, I pick up the phone and finally pay the bill and add it to the “paid” file.

Then I take one of W’s olives and make a well-deserved martini!

Finding My Happy Place

I discovered my passion for art in high school when my European History teacher incorporated art history into our lessons. I found myself excited to see what the Dutch painted as their maritime industry boomed and how the Spanish responded visually to civil war. After high school, I continued my exploration in art by majoring in it in college, volunteering and working in organizations dedicated to it, and generally involving myself with it as much as possible.

So what does being an art nerd have to do with allergies?

When I see a work of art I have studied but never seen before in person, or one that simply intrigues me, I am transported into the details of the brushstrokes, the color palette, the creative process, the texture of the paint, and every other visual element of the painting. If it’s a sculpture, I walk around and around, standing close and then backing away and then moving in again, taking in the lines of the marble or the shapes of the metal.

I completely lose myself in the act of looking. And at no point in my looking do I wonder if I need antihistamines for this.  

As such, art is not only a passion but one of the greatest forms of escapism for living with allergies. In a world where countless experiences might lead to the Emergency Room – or at least to the nearest pharmacy to drink Benadryl straight from the bottle – I take great joy in the moments dedicated to simply observing, studying, and adoring. My art appreciation is further underscored by the places in which it is exhibited. Given the nature of art and its preciousness, museums and galleries are my happy place, generally free from any potential triggers. The floors are bare. The walls are stark. No food and beverage are allowed. In almost every single art museum and gallery is a deliberate omission of food, pets, fabrics, balloons, nature, mold, pollen, scents, medicines, and pretty much anything that may initiate an allergic reaction.  

As such, the presence of art plus the absence of allergens equals an unparalleled place and space of enjoyment, safety, and joyful living with allergies.

Off to see the next exhibition!

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You Are a Badass

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I recently picked up this New York Times bestseller by the same name. WORTH THE READ. 

Let’s be honest, allergies don’t necessarily make one feel like a badass. To live safely with allergies, we must often remove ourselves from certain situations instead of confidently joining in the fun. 

Having lived in the coastal town of Hilton Head, South Carolina with a seafood allergy, I have stood at many a low country boil watching others indulge while I hover in the corner with an EpiPen and a rumbling stomach. Thanks to my latex allergy, I’ve literally run – not walked – away from friends at parties to avoid balloons. In school cafeterias today, separate tables exist to which children with allergies are assigned, removing them from their classmates and friends. 

It can also be hard to feel like a badass if your young child has FPIES. I once took W to run errands with me and decided to not wear our matching uniforms of sweats. Instead, I dressed him in a seersucker onesie and myself in a flowered blouse and skinny jeans. I even refrained from pulling my hair into a knot on top of my head. I was feeling pretty darn good about ourselves and swaggered on into the first stop of our outing. A sweet high schooler said hello and then smiled at W. He paused for a second, looking slightly funny at her, then proceeded to projectile vomit. The moment quickly spiraled from one of shopping in cute clothes (insert regrets about not wearing our sweats and leaving my hair down) to the beginning of one of his worst episodes which ended with us in the hospital for days. 

While reading a book doesn’t make these instances stop, nor does it make allergies and their seriousness disappear, there are coping mechanisms, mantras, and just good sentiments certainly relevant for living with allergies. It is also super well-written, hysterical, and sweet. 

As an allergy navigator as well as a parent to one, I particularly connected to the parts that covered:

Gratitude – for I am grateful for the foods that nourish us, safely, and the friends and resources we have to go through life with allergies, joyfully

Money – for I am undeterred by the bills for the medical care, organic groceries, and other costs that keep us healthy 

Faith – for I have faith that a higher power will keep that Goldfish out of my little’s grasp

Loving Yourself – celiac disease and all 

I’ll end this post with the same sign off as the book – you are a badass. (Now go snuggle up with a 100% cotton blanket and read it.)

Talking with Children About Allergies

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I remember it vividly. I walked into the taqueria for chips and salsa and left with the stunning realization that I didn’t know how to explain allergies to my child. 

It was kids night at the local Mexican restaurant and as part of the festivities, a balloon entertainer went from table to table twisting into reality Weiner dogs and giraffes. My toddler daughter’s face lit up when she saw them while my own face winced. For those latex balloon configurations were an exciting novelty to her and an allergy trigger to me. 

I told her we couldn’t get one and she began crying. I consoled her and said another time. I told her I was so sorry and apologized for not being able to accommodate her very normal request. I agreed that it was sad. I looked to my husband to jump in. I wept into my margarita.

In short, I did everything wrong. 

The next day happened to be her annual check up and with the previous evening’s incident fresh on my mind, I asked the pediatrician about explaining allergies to a three year old. He told me she is smart and to tell her the truth. Every time we encountered an allergen, simply say “that makes mommy sick.” Repetition is key. Say it over and over again. “That makes mommy sick.” Saying different things, using different words, or stumbling over different explanations and looking to someone else for an answer is confusing at best, and terrifying at worst, to a young child. The concept that something making someone sick clarifies. 

He also said to never apologize or emotionalize it. For its not something to be sorry for or emotional about – it’s a medical condition the same way any other condition is. She will only be sad if I make it sad. She will only cry and emote if I give her permission to cry and emote. 

I thought this all made darn good sense, but I needed to see it in action. So the next time we were faced with a balloon opportunity, I knelt down, looked my daughter in the eyes and said “those balloons are beautiful but we can’t go near them. They make mommy sick.” She nodded her head, shrugged her shoulders, and said “oh, okay.”

Amazing! My child IS smart and DOES deserve the truth! 

Having the knowledge to say these simple few words in a matter of fact, unemotional manner empowered me. I felt like I had the necessary tool in my tool belt and no longer felt panicked that I would encounter an allergen with my daughter in tow.  

This also translated well when several years later, we explained to her that her baby brother had allergies, too. “That makes W sick” not only makes sense to her, but she can easily explain it to others. I overhear her use the same line to her friends when they question why W’s breakfast plate is piled high with hots instead of buttered pancakes. She says it matter-of-factly, unemotionally, and confidently.  

The simple truth at play!