Oh Hey, I’m in Cosmo

I recently did an interview with Cosmo about food allergies. No, it’s not a list of 37 food allergies to try in bed, though that sounds…interesting.

Check it out here: http://www.cosmopolitan.com/health-fitness/interviews/a38421/what-its-like-to-be-allergic-to-almost-every-food/

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Food Challenge Round 40: Cindy vs. Lox

When I was a child, one of the things I wanted most in the world was to grow up and eat chocolate covered lox. Now, before you gag, understand: my friends/peers would only make me feel bad about being allergic to two foods — chocolate, because what kids don’t like chocolate; and lox, because it’s a staple of the American Jewish diet. I hadn’t ever tasted either, so I assumed if everyone loved both, eating them together would be stupendous. I’d tell my family and my doctor that when I grew up, I’d eat chocolate covered lox.

Today, I learned that dreams do come true — just not how you’d expect.

I challenged lox today in my second post-Xolair challenge. It started off like spinach — touched it, rubbed it on my fingers, freaked out about my lack of hives. Did ya’ll know fish is super slimy? Gross.

Then it stopped being like spinach.

I took a bit of the lox — like a sliver the size of my thumb — and put it in my mouth. Spit it out on the doctor’s desk almost immediately and shouted “WHAT THE FUCK IS THAT?” Fish, it seems, is an acquired taste.

I didn’t want to eat more. It was vile. And slimy. And gross. But I want to be able to eat fish. So, after whining overdramatically and having the nurse come in to soothe me, I took a bite. I swallowed. I SWALLOWED FISH. LIKE A SEA LION. I haven’t swallowed fish in years — maybe since I was a toddler. Never swallowed lox. It never got that far.

I then asked the nurse if I could take a bite of chocolate to fulfill my dream. She said sure. With the taste of lox fresh on my tongue, I ate a piece of chocolate. And you know what I have to say to all you naysayers out there who gagged in the beginning of this post? The tastes sort of blended. Like chocolate covered pretzels. Bittersweet chocolate with a salty smoky edge. If Gwyneth Paltrow “Goop’ed” it the whole world would be on that like it was a kale chip.

My dream of opening a lox and chocolate factory was soon dismantled. I got extremely nauseous. The doctor tossed me his trash bin. I didn’t use it. But I started feeling off. Ear burning, throat scratchy (though that was solved with water). My vision was intact and there was no sign of hives — both the typical symptoms I’ve gotten from touching fish — but I was lethargic, cranky, and groggy. Also typical symptoms of close encounters with the sea kind.

I stayed for monitoring and just kept getting more nauseous. The doctor gave me Claritin, which helped. We assessed that I can’t eat lox, though if I want to, I can challenge other fish and other cooked salmons (I may not want to). We also assessed that my threshold had significantly changed — I could now swallow fish without a severe reaction. A reaction not even worthy of Benedryl! This means I can touch it, I can be near it, and most importantly — I can now go to restaurants, not just in LA, but anywhere careful.

Am I disappointed that I can’t eat fish? Sort of. Am I cranky because I still don’t feel great? Sure am. But, I’m also really happy, and here’s why:

1. I grew up to eat chocolate and lox, and even though I’d given up on that dream long ago, it still feels great to have achieved it, even for a moment. The world is never how we expect it to be, but it sometimes surprises you and lets you have a taste of something you really really really wanted. I’m feeling very empowered.

2. I can now get closer to fish than ever before. I can feed a sea lion. I can go to the New York Aquarium and touch the starfish. As a kid, when we’d go there on class trips, I’d sit in the hallway by this fountain thing and wait until my whole class had touched the fish and soaped their hands. No chaperone ever stayed with me (seriously, the 90s were cool) and while my friends joined me once they were done, I was alone for most of the time and bored to tears — and also sad. Like, really left out sad. But now, I can touch the fish like the rest of them. Also, zoos and aquariums aside, I can be around fish eaters. Cooking just got so much easier for large family gatherings. I can clear off a plate that had lox on it and help my dad out after he’s done eating. That’s big.

3. It’s confirmed that the food challenges I’m set to do to keep assessing the Xolair aren’t for naught — each allergen will have a different threshold, and it’s important to find out what they are. But they’ll all be better. BETTER. That’s pretty damn good.

A keeper at my old stomping ground, the Prospect Park Zoo. I could be her!

A keeper at my old stomping ground, the Prospect Park Zoo. I could be her!

FOOD CHALLENGE TALLY

Cindy: 28

Allergens: 5

Next Up: Vote?

Xolair Round One: Complete (And the Story of How I Was Once Spider-Man)

Four months ago, I started this treatment called Xolair, that in theory will help mitigate my allergies. You can catch up on the first time here. But the short version is, I get an injection once a month and after four months, I challenge something I know I’m allergic to and see if I survive. Since one of the risks of Xolair is anaphylaxis, my doctor also has me taking steroids for a week out of the month to prevent anaphylaxis on the day of.

If you’ve noticed that this blog hasn’t been updated much in the last few months, it’s because I haven’t really known what to say. This treatment has put my normal food challenges on semi-hold (finding time between steroids and travel to challenge a food properly has been interesting, and yielded only one challenge: a fourth tsp of peanut butter which went perfectly well). It’s also put my feelings about food allergies into this weird state of confusion. Like, this might be the end of them. THIS MIGHT BE THE END OF THEM. What does that even mean? What does that even look like?  I can’t fathom it, and every time I think too much about it, I get scared that THIS MIGHT NOT BE THE END OF THEM. And I know what that looks like, and I can handle what that looks like, but damn, what a let down that’d be.

However, on this, the day of my last shot before the big challenge, I feel compelled to write. If only to organize my thoughts. Though, with the steroids fucking with me the way they are, I’m not promising much organization.

1. I LOVE how many movies I’ve seen in the doctor’s office. Good Will Hunting, Stand By Me, Mystic River, Dazed and Confused, and Pulp Fiction. I saw Pulp Fiction today and I just never want to do anything else. Movies are good! I want the Xolair to work so that I’m forced to see the rest of the amazing movies I’ve somehow missed (somehow = being too much of a “too cool for school” indie kid who preferred TV and things no one ever heard of, with a soft spot for romcoms).

2. Steroids are fucking weird. My reactions to them are wholly inconsistent. Sometimes I’m awake for days. Sometimes I fall asleep crazy early and wake up every hour exhausted. Sometimes I sleep just fine but have so many thoughts I don’t know which are real and which aren’t. Sometimes my legs hurt so badly I can’t sit normally. Sometimes (today) I giggle so hard I cry at literally nothing. Sometimes I yell at everyone around me about things that are irrelevant. Sometimes, all of the above. Sometimes, none of the above. Every day is different, and especially every month is different. Imagine PMS but more unpredictable. So maybe pregnancy? But the end result isn’t a baby, it’s just sobriety. Anyway, I’m extremely grateful to my family and friends who put up with all of the yoyo-ing, and especially who tell me which of my reactions are me and which are Steroid Cindy. Steroid Cindy is fun in doses (ha, doses!) but she isn’t real Cindy, and thanks to everyone who gets that and helps me get that.

3. I’m eating spinach on July 9. SPINACH. Here’s my relationship with spinach thus far in my life:

As a child, I knew spinach was something Popeye ate but I didn’t.

I would often pick up spinach calzones for my sisters from the local pizza store. Sometimes, they’d give us broccoli ones instead and those were not good. I was never particularly good at picking up the calzones because I couldn’t tell the difference between spinach and broccoli. Both were green things I didn’t eat that smelled funny.

I tried spinach at some point in my preteen years. I ate it cooked, but never raw. I HATED it. I hated it because it would make everything dark and angry, and I’d always feel the need to fall asleep, sometimes clutching my stomach. I assumed that this was a perfectly normal reaction to spinach so I never said anything. I’d read in books that spinach was a food kids didn’t like, so I assumed the reason was because it was dark, angry, narcolepsy-inducing, and hurtful to stomachs. Why should I have been different from all other kids? So I ate my spinach like I was told, and secretly took naps, and that was that. Until one day I threw a temper tantrum about not wanting to fall asleep, and my mother, who knew that spinach isn’t supposed to just knock you out, told me I was describing allergic reactions and that I should not eat it again.

I started experiencing airborne symptoms to all leafy greens around the time I was 15. I believe (and there’s some research on this) that the stench of 9/11 and the pollution that followed increased my allergic symptoms. I am grateful that of all the losses I could have experienced that day, I only lost the ability to be in the same room as salad.

During my sophomore year of college (so 2006 I think?) I had a doctor’s appointment to check out a sprained ankle. I took the train into Boston, got an aircast at the doctor, ate lunch at this great little restaurant downtown while reading a book — god I miss dining out alone sometimes — and noticed that my eggplant sandwich had a spinach leaf in it. Having not had spinach for years, I figured, no time like the present for an impromptu food challenge! (Though I didn’t know the term then). Anyway, after a few minutes, I realized I was getting sick. I was naive and didn’t carry Benedryl on me, so I did what anyone would do — I left the restaurant and got on the train heading to my next destination. The Park Street station never seemed so big. I remember stumbling through the station, gasping for air, and finally making it on the train, completely exhausted from walking and breathing simultaneously. I hopped out of the train at Copley, and called my best friend T from a CVS. I figured she should know I was sick, because you know, calling the person who’s in Ithaca and not Boston is totally logical in an emergency. But really, T is super smart, and encouraged me to buy the Benedryl even though I had to take an escalator up to the second floor of the CVS to buy it, and to buy a bottle of water, too. She told me to take the pill in line before I paid, and not think about stealing. The line was SO LONG. She said that no one wanted me to die in line and that it’s not like I wasn’t eventually going to pay when it was my turn. So, anyway, I took the pills and went to the commuter rail station, where I found the train pulling away as I approached the platform. With a sprained ankle and high on the Benedryl — not to mention woozy from the reaction — I grabbed hold of the conductor’s outstretched arm and jumped onto a moving train. I WAS SPIDER-MAN! Then, I slept on the train. That was the last time I ate spinach. So you can see why I’m scared to eat some now…

The good news is (okay, I’m starting to think I needed to have blogged in these interim months!) is that I’ve noticed a change. I was thisclose to horseradish while grocery shopping after round two and NOTHING happened. In fact, the reason I was so close was because I was able to get close to horseradish without noticing, whereas I usually get dizzy as soon as it’s nearby and then locate it to confirm the dizziness. I wasn’t dizzy, looked for the horseradish and it wasn’t in my eyeline, and wound up leaning over the bin like a regular person while picking out a suitable eggplant. I also was around salad and fish numerous times — sometimes even while eating — and was fine. So this drug might be worth it’s salt. (Literally. The steroids make me crave salt like the opposite of an open wound [A closed wound? This metaphor makes no sense..]).

As a closing thought: the song of the day, per my coworker who heard I’d finished my first round of shots:

 

Gluten Sensitivity — Not A Real Thing?

So, I already talked about how I hate getting asked if I’m gluten free…but something I didn’t touch on was how irritated I get when people with no medical issues treat their fad diets like medical issues.

I am NOT talking about people with celiac disease. That’s a real medical issue, and having watched my friends with celiac eat gluten, I can tell you, it’s serious.

It’s precisely because of how serious things like celiac and food allergies are that this latest “I feel so much better without gluten” craze pisses me off. Since “going gluten-free” is now a fad diet, people who actually will get seriously ill when exposed to gluten are in EVEN MORE danger. Or, people who are not in any danger from gluten, but are in danger from other things, are thrust into this confusing world that puts our lives at risk.

A few examples of what I’m talking about:

1. When I was in college, I had to see the nutritionist to figure out how to eat in the cafeteria because I was constantly getting sick. The following dialogue ensued:

Cindy: I don’t think I am getting enough vegetables in my diet, because I’m getting sick from vegetables I’m not allergic to from cross contamination.

Nutritionist: Oh, of course you are. The kitchen uses leftovers from one dish and repurposes it the next day. I have a solution. I get a lot of people gluten free pasta.

Cindy: Oh, but I don’t need gluten-free pasta. I can eat regular pasta.

Nutritionist: What about salads? That’s a really good option for gluten-free students.

Cindy: I’m allergic to leafy greens. What are other ways I can eat more vegetables? I can eat tomatoes, peppers, zuchinni — is there a way the kitchen can prepare those without cross contamination?

Nutritonist: You know, I have found that a lot of the students I work with really enjoy this chicken parmigiana dish. It’s great, and we can make it gluten free,  And with a side salad. And that’s a nutritional meal.

Cindy: I keep kosher, and can’t have salad, so I just want to talk about eating more vegetables.

Nutritionist: If you’re not going to need the gluten free pasta, I don’t really know how I can help you. The salad bar has a lot of choices.

And so on…

2. A former colleague decided to try to go gluten-free. I asked him why, and was particularly interested because he was completely insensitive to my food allergies. By that, I mean, he would leave food on my desk, touch my tupperwares while I was eating with his salad hands, have meetings with me while he was eating salad he knew I was airborne allergic to…he was less malicious (I hope) than he was misinformed. And partly because I don’t think he understood the difference between real food issues and diets like his. For instance:

Cindy: Why are you going gluten-free? Have you noticed yourself getting sick?

Colleague: My sister doesn’t eat gluten, her doctor told her not to.

Cindy: But she gets sick, presumably. Do you?

Colleague: I might, how would I know?

Cindy: Do you feel weak? Do you poop more often than normal?

Colleague: No. But gluten is bad for you. Let’s google it. [He does]. See, it says here that whole wheat is better for you than white flour.

Cindy: That’s true, but both have gluten.

Colleague: No, whole wheat is better for you than white flour.

Cindy: Everyone knows that. But whole wheat has gluten.

Colleague: See, it says whole grains in general are much healthier. So I should go gluten-free. You think you know everything about food.

Cindy: I know a lot about food, because I have to think about it constantly. I bake and cook and know all about ingredients because food can kill me. Whole wheat and white flour have gluten. Gluten is a protein found in wheat, rye and barley, and cross contaminated into most oats. It’s in whole grains as much as in non-whole grains.

Colleague: Are you sure? I don’t think so.

Anyway, he decided to go gluten-free for a week. At the end of the week, another colleague asked how it was going.

Colleague who eats gluten: How’s the gluten thing going?

Colleague from above: You know, I haven’t lost weight. I’m eating salads without croutons, but by the end of the day, I’m so hungry, I’ve been eating a bag of pita chips after dinner.

Cindy: So you’re eating gluten.

Colleague from above: I guess so? I mean, it’s hard to just eat salad.

Cindy: There are things you can eat that are gluten-free that aren’t salad.

Colleague: I don’t know, I don’t think so. I haven’t lost any weight at all this week.

His misunderstanding of how food worked may not have impacted me in that moment, but in general, he was flippant about my allergies because he couldn’t see the difference between his gluten-free week and my medical issues. Not eating gluten didn’t fix him (though, of course, he ate gluten) so how could my issues be real?

Not to mention, had he had a real gluten issue, like an allergy or celiac, he wouldn’t have even eaten his salad, as the dressing more than likely had gluten. And the cross contamination of the croutons in other salads would have been an issue.

The more people who go on fake gluten-free diets, the harder it is for people who actually do get sick from gluten to explain their needs coherently. Or for people with other food needs to be heard. I’m not talking about people who are intellectually honest about it — people who say, “I can eat gluten in small amounts, but my doctors have said it affects X condition. I don’t suffer from celiac disease or food allergies, but gluten is a trigger for my X condition.” I’m talking about people who talk about how they gave up gluten and their stomachs are “better” and yet, they sneak gluten in every now and then and “regret it.” People who have self diagnosed a sensitivity to gluten and therefore don’t eat it…except when they do.

You don’t “regret it” when you go to the hospital for an anaphylactic allergy. You thank god that you’re alive. You don’t “regret it” when you’re hunched over your toilet for days except when you’re fast asleep and talking incoherently because you have a celiac flare. You thank god that you’re alive and probably notice some dirt in the grout on your bathroom tiles.

The good news is, a follow-up study to the non-celiac gluten sensitivity study was just conducted, and it turns out, there likely isn’t such a thing. Read the info here. So maybe all this nonsense will stop. And we can move on to other fad diets, like paleo or Atkins or you know,  just eating in moderation.

Let’s leave off with a good laugh with Jimmy Kimmel, who’s totally on my team. He asked people on a gluten free diet what gluten is — and like my former colleague, they had not a clue. It’s kind of hilarious.

 

Food Challenge 28: Cindy vs. Maple Syrup

The food challenge was the least interesting part of my appointment this morning. First of all, I apparently cancelled my appointment on Friday when I called the doctor with emergency throat swelling, but I was not 100% on my game during that call and may not have actually said, “I want to not challenge food but I want to keep the appointment.” In any event, I brought food to challenge anyway, because when I woke up this morning, it seemed silly to go there just to say hi. So I settled on maple syrup, since I was pretty sure I could eat it (spoiler alert: I can) and just hadn’t been because a) I like pancakes better with sugar and b)trees have scared me since the pollen shots.

Anyway.

The reason this challenge is interesting, is because the doctor tried to set me up with another patient who was in for skin testing. It was like something out of a sitcom. Suddenly, the whole office turned into a bunch of yentas – “you’d be such a good match, both allergic to fish!” and “tell him what happens when you’re near horseradish at a bar mitzvah!” Allergist, allergist, make me a match…find me a find…

I rolled with the punches, of course. My suggested beau was way more tolerant of the skin test pain than I’d ever been, barely flinching. My fish test made me cry. Of course, I awkwardly told him that. And when his accompanying mother (apparently, she’s the usual patient) asked me if I could have lox (no) I decided to tell them how as a kid, all I wanted was chocolate covered lox, since I didn’t know what either tasted like but my friends all liked both. We got a good laugh. Which was nice, since the story was preceded by, “Did Cindy tell you she writes comedy videos? Come on, tell them about the videos! They’re funny!” So I guess I proved that?

There’s no wedding date set, but hey. They say it’s best to meet men by sharing a hobby/common interest; maybe an allergist and a shared fish allergy is the same thing?

“What do you do for fun?”

“I build model airplanes. And you?”

“I’m allergic to fish.”

Plus, I bet we can both have maple syrup.

Oh, and ps. I had no reason to be scared of maple syrup. It doesn’t have pollen in it. Neither does honey. Just an FYI. I love how much I learn every time I do a challenge. I’d be lying if I said I didn’t look forward to these appointments. If you’re going to risk your life challenging a food, it may as well be with one of the best doctors around who also happens to be super fun.

FOOD CHALLENGE TALLY

Cindy: 20

Allergens: 6

Up Next: Onion powder

Allergy Tattoos? Ugh.

A friend shared this article with me, about temporary tattoos for kids with allergies in case they get lost.

http://www.slate.com/blogs/xx_factor/2013/07/18/safetytat_allergy_tattoos_should_kids_with_food_allergies_wear_warning_labels.html

This is ridiculous. First of all, ink isn’t good for people with allergies. The chemicals are bad for your skin and even often have popular allergens. Also, people with allergies are not cows. In case of emergency, there are bracelets. In regular life, kids are smart enough to know better. They just need parents who are straight with them.

I was around five and in day camp when the counselor came around with a tray of some fried food that was unidentifiable. It was either fish sticks or schnitzel, from the looks of it. I asked my counselor, “Is this fish or chicken? I am deathly allergic to fish but if it’s chicken, I’ll take some.” She said, “It’s chicken.” I said, “Are you sure? it seems like fish is a better option and I think we’re not having meat today.” She said, “I know, but they changed their minds and it’s chicken.” I ate a bite and was like”FISH!” and I don’t remember anything else but I know I went home. I imagine I got very sick. Would a tattoo have helped? I doubt it. The counselor was an idiot. I was aware of my allergies. I asked the right questions. Tattoo or no tattoo, children just need responsible adults when they aren’t with their parents, and their parents to train them to ask questions and be smart. No kid WANTS to die. I didn’t WANT to eat fish sticks. I didn’t want to try something that made me get sick. I think what parents don’t get is that food that is appealing to non-allergic people isn’t appealing to allergic people. Yes, the idea of chocolate tempted me as a child. The fear of chocolate kept me away. Knowing how bad it felt to get sick kept me away. Things I was more allergic to, like fish, tasted foul and I spit them out. Spinach tasted like darkness and anger. It didn’t taste good. Even now, when sometimes all I want is a food I’m allergic to, the temptation will never outweigh the risk of death.
Bottom line: responsible adults will be responsible if there are tattoos or not. Irresponsible adults will be irresponsible if there are tattoos or not. People with food allergies will prioritize their own lives over food regardless of whether they have tattoos.
Let’s try to at least encourage people to be intelligent, shall we? And maybe train camp counselors better.

Why Don’t We Believe in Allergies?

Today, I was incredibly moved by a post on the blog A Tale of Anaphylaxis. The author, epipenprincess aka Sydney, is a student who has quite a few anaphylactic allergies. In her latest post, she talks about how after a recent bout of anaphylaxis, some people were talking behind her back about how she was overreacting and making it all up. I was so moved because it reminded me so much of countless experiences I’ve had where people just flat out didn’t believe me. I know that a decade ago, I was a high school student with severe allergies and I made it through just fine, but I’m still in such admiration of Sydney’s bravery to not only handle the so-called “haters” but to do so the day after a reaction, on a blog, and with a positive attitude. That doesn’t sound to me like the sort of person who makes up allergies to get attention, or overreacts to things willy-nilly. Her immune system might overreact, but that’s about it. And for people to be gossiping about her while she’s sick – it’s disgusting. Somehow, I can handle this ridiculousness when it happens to me (most of the time, I do get riled up sometimes), but hearing about it happening to someone else just infuriates me. There’s this fad to not believe in allergies. Allergy agnosticism, if you will.

I get not believing in trolls, or leprechauns, or unicorns (though I sort of believe in unicorns). But allergies? That’s absurd. It’s not a thing to not believe in. Why do we believe in cancer or heart attacks or ADD but not believe in allergies? Because the idea of allergies is so crazy that we don’t want to? We can’t fathom living in a world where something harmless to us is actually a killer to some people – we decide we don’t like that notion – so we assume the person is crazy? If you can’t experience something first hand you don’t think it’s real? I wonder if the logic goes, “I could have a heart attack someday, so that’s real. But I have no history of an allergy, so anaphylaxis is probs fake.” This attitude – which, honestly, I think is pretty illogical – is also dangerous. What if Sydney were younger and not in tune with her body enough to know she needed help? I’ve been there. Thankfully, I never stopped breathing until a couple months ago, but I definitely had times where I didn’t take care of myself properly because I was convinced I was crazy. And why? Because enough people had told me I was crazy.

I remember one high school experience in particular. I was at a weekend seminar for school, and even though I asked the caterer what was in all the food, I mistakenly ate pasta with mushrooms. Once I found out there were mushrooms in the pasta, I kept eating it, because I had never tried mushrooms and thought there was no time like the present (oh, how my doctor would flip out now if he knew). I started feeling hazy and weird, and told my friends I needed help. At the time, I didn’t carry benadryl with me, because I didn’t react that often. There were no real rules about epipens and all that. So, we get the EMT and tell him what’s going on and that I need benadryl. He didn’t have any (also something that wouldn’t happen these days, I hope), and before he sent someone to get some, he “examined” me. At this point, I was freaking out that I wasn’t going to get medicine fast enough. I started having a panic attack, but when your throat is tight and you feel sick and you’re on the lookout for anaphylaxis, a panic attack isn’t the best idea. The EMT told me he thought I was only having a panic attack, and I assured him that panic attack or not, I was having a reaction, and that it was either getting worse or I was indeed panicking, but either way, I needed benadryl stat. Someone eventually ran out and bought some, I took it, and they sent me back to my room. I felt better after the benadryl, and thank God didn’t need epi. I remember another girl from my school who had a lot of allergies came to my room and calmed me down. She said she had heard what happened, and that no matter what anyone said, I knew if I was having an attack, and that if I needed anything, she had allergy meds with her and would help me if I needed to go to the hospital. She wasn’t a good friend of mine, more of an acquaintance classmate, but it meant the world to me that she helped me. I hated that people had been talking about me behind my back – I’m sure, like Sydney’s peers, they were saying not so nice things – but this girl weeded through that to support me. When my school’s professionals were lax, inattentive, not taking me seriously (and making it worse by doing so, as the longer I waited for the benadryl, the more scared I became, hence the panic attack), my friends and this girl had my back. I don’t know if the EMT didn’t believe me, or if the caterer didn’t believe me when I asked him what was in the food, but I know I wasn’t taken seriously, even though it was serious. It’s not a minor incident when you start to lose your eyesight and train of thought because of a food. It’s not as serious as not breathing, but it’s not a walk in the park either.

It’s not just the EMT who didn’t have his act together. The doctor at my college actually told my primary care doctor that she didn’t think, as a general rule, that allergies were real. I often have meals with people who think I’m making it up. People who say that no one outside of America has food allergies (except that Canada and other countries actually have better allergy laws, so I imagine they have citizens who require said laws). The first allergist I saw in LA didn’t believe in my food allergies even while she was testing me, but to her credit, she did believe in my environmental allergies. I feel ridiculous typing that, but she actually said to me, “sometimes people think they have allergies, but really they just have exhaustion.” Oh, so I was exhausted when I was being breastfed, and just never recouped that sleep in 26 years? Then she suggested I had  an ulcer. I do get ulcers from some medicines, and I can tell you, they feel nothing like your throat swelling, hives, loss of vision, and shortness of breath. She’s an allergist and she didn’t believe in my allergies. I can go on and on about people who have questioned me.

That said, there are more believers than non-believers. The way I’m learning to deal with these people who think I’m crazy is by focusing on the people who know I’m not. My friends who encouraged me to see an allergist and get treatment. The people who go out of their way to cook meals I can eat. The people who wash their hands every time they come to see me in case they just ate something I can’t have. The people who have taken me to the hospital. Who have talked me through taking medicine when I need to. Who look at menus when we go out to eat or when they order in and get something that’s easier for me to be around. My current doctor and his team of nurses who continue to educate me and go out of their way to check in on me when I’ve had an attack. And all of you who read this blog.

Sure, the non-believers put my life in jeopardy. They make it hard. There’s no excuse for them. But ultimately, they don’t matter. I know the truth, and the people who are important know the truth. Allergies aren’t something you can believe in or not believe in. They aren’t something to joke about or make fun of or disregard as unimportant. And while it’s exhausting to both have anaphylactic allergies and be brave, I’m going to take a page out of Sydney’s book and brush off the “haters,” and just keep on trucking, safely.

Allergies and Bullying

My friend M (I’ve got so many of those, get new initials, people) alerted me to an interesting link this morning: ABC News published an article detailing a study about the correlation between bullying and food allergies. Apparently, bullying is pretty common among kids with food allergies — 32% of kids with food allergies have been bullied because of their food allergies, according to the study.

The most common forms of bullying, according to the article, were straight-up teasing and waving the food in front of the child. Also included were instances where the kids were forced to touch the dangerous food, and where the food was thrown at them.

M asked me if I was surprised by the article.

I was surprised that there was an article, but by the bullying? Not particularly.

I don’t think of myself as having been bullied. I’m not sure if there were real bullies in the nice little bubble I grew up in. When I think of bullies I think of Hey Arnold’s Harold or Rugrats’ Angelica or Boy Meets World’s Harley. That didn’t happen to me. I sort of think bullying as a labelled thing is a very new term from this decade. But, that said, can I say I haven’t experienced the forms of bullying as labeled in the study?

No. I can’t say that. I was definitely teased about my food allergies. Not all the time, but definitely enough to make a mark. Check out this essay I wrote as a fourth grader after a classmate made fun of me. As for waving the foods? See the previous link. It talks specifically about that, and yes I remember it vividly. A classmate, let’s call her Moesha, waved a Twix bar in front of me and said “You don’t get to share snack with us because I have a Twix bar and you’re allergic so the whole class is going to trade snacks but you don’t get to because you don’t have the right foods.” But to be fair, I can’t say I didn’t do the same thing to another food-allergic kid in my class — let’s call him Jackson. I remember finishing a bag of Herr’s potato chips and showing it to him and saying, “I finished this bag of chips, but you can’t eat them, because you’re allergic to them. And isn’t it funny that I’m not? I ate food you can’t eat.” It was bitchy and mean and Jackson, wherever you are, I am sorry. I’m sure I did it just because I wanted to do what everyone else was doing, but that’s not an excuse, and I’m sorry I learned a bad behavior, and mostly, for hurting your feelings.

As for touching the dangerous foods, thankfully no one ever forced me to do that. But throwing them? Um, yes. This was probably a turning point for me in some aspect of my life:

When I was 15, I was on a west coast trip with a youth group. My allergies had gotten worse that year for reasons I’d later learn were attributed to September 11. But I was still figuring out why I couldn’t see well around cole slaw. I remember one night being super frustrated because I kept accidentally touching salad with cabbage so I kept having to leave dinner to scrub my hands. I was sharing a table with a bunch of friends, one of whom was the closest thing you could get to a bully in my world, but really, we were friends. When I returned to the table, this guy, let’s call him Ross, asked, “Are you really that allergic to cabbage that if it touches you you’ll get sick?” I responded yes. He said, “So if I threw it at you, you’d get sick?” I responded yes. The next thing I knew, a leaf of cabbage was headed my way. I freaked out. Went to the bathroom to check for hives and scrub up. By the time I got there and lifted my shirt, a series of hives in the exact shape of the lead had formed. I ran back to the table, and said, “Ross, you tried to kill me. You basically did the equivalent of pointing a gun to my head and shooting to see if I would die. You deserve to burn in a fiery pit filled with snakes.”

Then I grabbed another friend, told her to tell the counselors I needed Benadryl (because in those days, a mere ten years ago, kids didn’t carry Benadryl or epi on them regularly…and no, the counselor didn’t have any in her first aid kit, either, she had to send someone to the store), and marched off to my hotel room to shower and calm down.

Luckily, the reaction didn’t get farther than the hives. I mean, it was one leaf through a shirt, so there was no direct contact. But that moment changed me. Because a) I learned how allergic to cabbage (I’m sorry, the bacteria that grows on cabbage) I am, and b) I learned how people don’t understand that allergies are life-threatening. And they don’t care.

Now, the counselors debated sending Ross home for the summer, and he was so sad, and I know he was just being a 15 year old boy, so I told them that if he apologized, I’d move on. They made him publicly apologize. And he did, and he thanked me for letting him stay. I don’t know how I feel about any of that. Do kids deserve to be sent home when they endanger another kid’s life? Yes. But do I really think my analogy of cabbage to guns holds? In the wake of Newtown, I don’t know that I can say that. I think in a general way, yes, it holds — both are deathly tools — but I don’t think people are educated enough about allergies to know that they really are deadly, even non-peanut ones, even in people who aren’t under the age of 8 and at school. So if you don’t know that you are yielding a weapon, you can’t be held accountable.

I think this all really boils down to education and awareness. Because we can’t expect kids to know that food allergies are real, uncontrollable, deadly, and hard until adults start believing in them. Like they’re Santa or something.

Because I have to say, the bullying or harassment I face as an adult is far worse than any I encountered as a child. Children are stronger than we like to think. They might cry when someone waves a Twix bar at them, but ultimately, they can shake it off. Adults hit harder and deeper, and there are some things that are bigger than a Twix bar being waved in your face or a piece of cabbage being thrown at you.

Things like being told you’re crazy. Like that there must be something mentally wrong with you that you cause yourself to be sick when you eat foods, because it’s all in your head. That’s happened more times and from more people than you can probably fathom. And then there’s the idea that you have to divulge your medical history with everyone who you eat near. I had to tell a former boss the details of my entire testing and diet before she believed my doctor’s note that I was sick. She said, “Sounds worse than Passover! Can’t believe you’re allergic to rice! That makes no sense! Haha!” as if that were appropriate. I recently met someone who said, “Oh, you’re Cindy, you can’t eat gluten!” and I wanted to say, “Actually, I’m Cindy, and I can eat gluten, but what other misinformation have you heard about me?” (Yes, I’m blogging about my allergies, but mostly so that someone else won’t have to. It doesn’t mean I like to be defined by this one thing). Other forms of adult bullying? People questioning your parents’ habits, did they raise you with antibacterial (no, I don’t know if I’ve ever seen my mom with a bottle of Purell). Bosses and coworkers not understanding that it’s not your choice to take a sick day when you have a reaction, and still holding it against you when it comes time for raises/promotions/reviews.

All of that is a form of bullying and harassment. So can we be surprised when our kids — who are raised in a world when adults behave in the ways described above — tease kids with food allergies? Kids will tease no matter what, I think the way they learn about difference is to point it out and laugh — but when there aren’t enough adults showing them the right way, when there aren’t enough adults saying, “Hey, let me actually explain this difference to you, and why it might be hurtful, and why little Sally is sick,” can we really fault them?

And adults — we know better, right? We don’t laugh at people in wheelchairs, we don’t harass people with diabetes, we don’t bully people because they get recurring UTIs. So why do we do it with people with food allergies?

For me, the bottom line is: no, M. I was not surprised. And I want to be able to say to those kids, “It gets better,” but I can’t yet. Because from where I’m standing, it doesn’t get better. I just get stronger. But I’d like to be proven wrong. And I think I can be, if those of us who do know better raise awareness among our peers and let that trickle down to our children.

Spreading the Iceland Water Gospel

It finally happened last Sunday. A moment I’ve been waiting for since 2006.

A stranger bought Iceland water, based on my recommendation.

Some backstory:

As an infant, I wasn’t great at digesting water. The minerals or whatever it is that enhances water was just too much for baby Cindy, I guess. The only solution was distilled water or Iceland spring water, as the latter has the fewest minerals of any natural water and a high pH. At the time, Iceland water came in this handy little boxes, like juice boxes but for water. It was so cool and refreshing, and the water even made me feel more normal as I grew up to preschool age, because I, too, had a drink in a box. Maybe I didn’t have a tuna sandwich like the other kids (plain macaroni and a thermos of milk, and yes, I ate them combined as if the pasta were cereal), but when snack time came around, I whipped out a boxed drink like the best of them.

But Iceland water went out of business. The way legend has it, my parents freaked out that I’d dehydrate or something and called the company to see what they could do. We got the entire remaining wares shipped to our house, and I got to drink Iceland water for a little while longer.

And in 2006, the product was reintroduced to the market. It was hard to find — basically, Walgreens and specialty stores were the only distributors — but I would stock up. And I started spreading the gospel of Iceland water. I figured if I could convince my friends to drink it, the company wouldn’t go out of business, and in the maybe sorta likely event that I or my future children couldn’t drink standard water, we’d be able to rely on Iceland water.

It became a bit of a joke in my family, because we’d have it all the time and talk to our guests about it. My sister especially remains committed to only drinking Iceland water – she was a water snob to begin with (as she should be!) and preaching Iceland above all else only made sense. Plus, Iceland’s a cool place with a Brandeis grad former Prime Minister, a belief in elves,  and cool horses. So supporting their economy is just smart.

Cut to 2012. Iceland water is a bit more popular, showing up in most stores that carry varieties of water. The bottles look different depending on the store – Walgreen has smaller bottles with pink flowers, Whole Foods has rippled bottles with blue labels, and there’s even a second company called Icelandic Glacial that bottles its water in glacier-shaped bottles.

On Sunday, I was stocking up on Iceland water for the holiday, since tap water has been making me feel less than pleasant since April. The elderly gentleman behind me in line remarked, “What, is Iceland water special or something? Hope you don’t plan on drinking all that yourself!”

I mean, I did. 8 bottles for 3 days isn’t terribly much, is it?

I told him why I’d chosen Iceland water (minus the allergies, just the mineral/pH stuff) and he turned to the cashier. “Can you get me a bottle of that? It must be good if this young lady is buying so much of it. Gotta try this Iceland water, see if it’s the real deal.”

I have no doubt he was converted. How could you not be, after drinking it?

Sometimes, the communal nature of shopping at Whole Foods, the obsession about what everyone else is buying…sometimes it can just make your dreams come true.

 

Chocolate is Probably My Favorite New Food

I had chocolate earlier today. It was AMAZING. I’d say to die for, but considering I didn’t eat chocolate when death was potentially on the table, that’d be inaccurate.

Anyway, I found an essay I wrote in 1995 (the beginning of fourth grade, I was 8 years old) about almost trying chocolate. And I feel quite similarly now, 17 years later.

Oh, and [sic] in advance.

Y.of F.
Cindy Kaplan
Sept. 19, 1995
Tuesday

The Best Day of My Life

The best day of my life was today. Why? Well I’ll tell you. It may seem weird to you, but it’s awfully normal to me and to people who know me. Here I go…..

Today when I came home from school I took a snack and then my mother wanted me to go shopping with her. So I went. We went to Glatt Mart to buy dinner. We didn’t buy only that, we bought half of the store to. We were buying so much, it seemed that we were like pigs. (We really aren’t.) Well, then we came to a rack of chocolate. My mother said that I could look for white chocolate. So I did. I found one with hazelnuts. Then I found plain white chocolate. Finally! I gave it to my mother and she bought it. Yipeeeeeee! Yipeeeee! I am finally going to try chocolate. I am so happy. That was the best day of my life.

This drawing accompanied my essay. I’m not much of an artist, but I’m so glad I drew myself in a long skirt, long sleeves, and with giant teeth. Good self image, 8-year-old Cindy.

***

I remember that day so vividly. And even more vividly, the day (months or even a year later, I think) when I finally was able to try the chocolate (as I’m relearning, getting your body to a place where you can introduce a new food is tough, especially when you’re not under the supervision of a doctor. Because when I was a kid, allergists weren’t really the same as they are now).

I was sitting at my dining room table after a Shabbat lunch. Everyone had had dessert, and it was my chance to try chocolate. My mom and sister sat at the table with me as I took a bite of that white chocolate bar (white, because there’s less cacao). I let it sit for a minute and then I said, “Oh, it tastes like chocolate! It doesn’t take like carob at all!”

I knew my life had changed. When I didn’t react to that small square, I knew at the very least, I’d be able to have white chocolate and live like a kid.

And then soon after, my family went to dinner at Tevere 84, I think to celebrate my parents’ anniversary. It was a fancy, delicious, Italian kosher meat restaurant on the Upper East Side that had just opened up. and for dessert, I ordered chocolate cake. It was dark chocolate. I was so excited because since it was a meat restaurant, their cake would be more pure than the dairy one (milk chocolate is a little harder to try) and I’d get to participate in the celebratory dessert. That cake was one of the greatest foods I have ever tasted. Both because it was objectively good, and also because I learned that I loved dark chocolate, that I could eat it, and that I would be able to eat chocolate for real. M&Ms! KitKats! Hershey’s Kisses! Milky Ways!

Today’s chocolate reminded me so much of that cake. I had only a tiny bite, at the end of the work day, but it filled my mouth with an incredible taste. I felt stress pouring away and happiness setting in. Hours later, I feel whole again. Chocolate is the greatest food known to man (or woman, let’s be real), and I have it back in my life.

Today, June 24, 2012, is the second best day of my life.

Success!