Just Don’t Eat It!
 
 

20150720_134425 (2)

 

JUST DON’T EAT IT!

by Leah Roffman

We have all seen the stereotypical portrayal of the allergy and asthma nerd. While I am proud to call myself a nerd, I take issue with the often weak, unpopular and uncoordinated caricature of the allergic and asthmatic child. I have carried the diagnosis of Food Allergies, severe Asthma, and Inflammatory Disorders my entire life. Contrary to the usual portrayal, I believe that the trials and tribulations of navigating a poisonous world has made me stronger.

Many of the less empathetic (let’s call these people “insensitives”) insist that severe food allergies are the same as the Pollen sniffles they get every spring. Much of the world remains misinformed about the dangers of anaphylactic allergies. As a result of this ignorance, insensitive people refuse to limit their consumption of airborne allergens in public places. Consequently, while advocacy and food allergy awareness remain near and dear to my heart, I realize that it is equally important to move swiftly toward the eradication or at least suppression of life threatening allergies.

Many people in my life would actually advise me …so if you’re allergic to it, just don’t eat it and you should be fine – those people completely ignoring the literature proving that many food allergies are airborne.  Once the allergens reached my body, whether through my mouth, my skin, or my nose, they caused a cascade of systemic reactions. The inflammation caused by my intense reaction to these microscopic molecules of destruction caused my body to be rapidly overwhelmed by itching, swelling, sneezing, coughing and worse.

After many emergency room visits, steroids, prolonged school absences and accompanying social consequences, my medication list kept growing.  One night, in middle school, I went to see the Harry Potter Midnight Premiere with a friend at which time something in the theater caused a severe allergic reaction.  The emergency room took a CT scan of my lungs which showed some nodular changes.  At that time my family decided that I could never recover in Michigan with the allergens and severe weather changes.  We picked up and moved to California in time for my first year of high school.

Unfortunately, things got so bad with my asthma that my immune system was beat. I was hospitalized with H1N1 my first week of high school. I was on IV Steroids and oxygen for a week and continued steroids for the better part of my first semester of school.  The steroid weight gain caused problems with my confidence as I had been a physically fit dancer up to that point.

I was allergic to Eggs, Nuts (peanuts and tree nuts and every cousin of legumes such as beans) and Fish (finned fish and shellfish). I was airborne. I couldn’t be within 10 feet of Nuts or Fish or I was at risk of anaphylaxis. The enemy was literally everywhere.  

By way of example:

– I went to Epcot with my family one year when they had Walnut trees on the grounds.  I broke out into hives 5 minutes inside the park.

– When I went to the movies we used to bring a towel for me to sit on so my skin never touched the seat.

– I’ve never been to a baseball game.

– I sat at a special table at lunch accompanied by a recess monitor to make sure I was safe-every single day of elementary school.  

– I was not allowed to play outside at recess during most of the winter due to my asthma.

– My first boyfriend had to give me a rundown of every food and beverage he consumed for the day if he intended to kiss me.

– I could only go to a few restaurants after the menu was checked out and with the clear understanding that they would cook in areas that were not cross contaminated.

– I could not get my hair washed or styled in a salon since we didn’t know if there were nut oils in the products. (Or manicures)

– My teachers had to physically carry a hip pack with EpiPen, liquid Benadryl, and inhaler– from room to room since I couldn’t have it too far away.

– My parents donated massive quantities of wipes to the school so that after lunch all hands could be wiped under supervision.

– My only camp experience was at an air conditioned dance camp. They went out of their way to keep allergens away from the camp. Nevertheless, my parents brought every single piece of food that I ate for the week

– I never got to ride the bus to field trips with the rest of the children. It was too much risk that someone would have an allergen aboard and there was no adult available to medicate me.

– My favorite game in high school was “Never Have I Ever” because of all the things I couldn’t eat or do.

Eventually, my body got so hyper-allergic to everything that I actually developed an allergy to cockroaches, which are often found in public high schools in California. I would develop a sandpaper rash as soon as I entered my high school campus.  I started an online program for my last two years of high school because I couldn’t stay in a public school with cockroaches and peanut dust.

The treatment was often isolating. I had recurrent pancreatitis from so much steroid use.  I was in such a dark place at that time. My illnesses were a source of stress at school, in dance class, and in my social life. I was depressed, I felt alone.

When I was 16, I was seeing a neurologist for severe migraines. A mother of another patient referred my mother to a specialist by the name of  Dr. Randhawa. We didn’t know it then, but that little business card was the start of the rest of my life.

When my parents took me to Dr. Randhawa, I was angry, depressed, and very skeptical. Every so called “specialist” I’d seen in California had failed me.  I was hostile and not very nice to him the first visit.

In spite of my negativity, the doc immediately started trying out different treatments and ordering tests. As we started to focus my issues, the doc started me on a new drug that he thought would help with the pain and help me get back out into the world.  I started sublingual immunotherapy (SLIT) for the environmental allergens.  As I started to improve, we realized my asthma was still causing more problems.  Dr. Randhawa suggested an injected drug that would help the allergic asthma…adding that it might also be helpful in reducing many of my allergies. I thought he was crazy.  Nevertheless, I agreed to the injections and improved dramatically.  With that success, Dr. Randhawa started to educate my family on the options of Oral Immunotherapy.  

Initially I refused, explaining that he previously described my food allergies as “off the charts” and “some of the highest test results he had seen”, and now he wanted to start feeding me the things I was allergic to? I wasn’t going to let that happen, and neither was my mom. He patiently explained in more detail his procedure (for more information on OIT treatment click here). We decided to try it.  I am so happy about that decision.

Fast forward 4 years:

– I’m a Sophomore in college (I got a 4.0 last semester).   

– I’m on the speech and debate team.   

– I feel free to go where I need to and do what I need to without the constant fear of death by lunch.

– I’m eating as many eggs daily as I please, a peanut butter and jelly sandwich every night, and every type of nut out there is A-OK.

– I can go to restaurants and Disneyland and Comic Con all by myself without worrying that something terrible will happen.

My world has completely changed from the young, fear-filled, little girl I was my entire life. I’m not ruled by my illness. The world is out there and I am ready to embrace it.

 

Leave a Reply

Your email address will not be published. Required fields are marked *