If you or someone you know (that isn’t me) suffers from food allergies, you need to be aware of the latest guidelines from the FDA that allow food manufacturers to make substitutions in their product ingredients without changing their labels. The guidelines offer protections for the Top 8 allergens, but since 170 foods are known to cause allergic reactions, that’s not quite enough, nor does it cover people who are severely allergic to things like peanuts and soy even in refined peanut oil and soy lecithin.
One of the consequences I didn’t expect from COVID-19 was not having access to Xolair. My doctor’s office had to close because most if not all of the patients are immunocompromised (allergy and immunology go hand in hand). I’m not 100% sure when I’ll get my next dose or how my body will fare as the medicine depletes from my system, so I’m buckling down and heading back in time – to when this blog was more active – and making sure I’m extra careful and diligent so as not to wind up in an ER experiencing anaphylaxis. It’s especially fun given that it’s horseradish season – hooray for Passover! – so even with Xolair, it’s the most allergic time of year for me. Spring and horseradish. And now a pandemic. What can go wrong?
But I don’t want to focus on the fear or negativity. I’m trying to feel empowered. To that end, I wrote a piece for Medium about how the tricks I’ve learned over the years to avoid allergens are coming in handy in this socially distanced society.
When the world gives you horseradish, you can make maror (bitter herbs) or you can make…well, hope.
I was recently interviewed by Kitch’N Giggles, a brand new meal kits targeted at families with young kids about my experience living with allergies. Check it out here!
Helping out in the kitchen at a young age really helped me figure out how to prepare delicious meals quickly when I was diagnosed with such severe allergic shock that I couldn’t eat any processed foods. I learned so much from watching my mom and my aunt cook and invent recipes on the fly. Allergies are so much less scarier when you know how to cook and truly understand the ingredients you’re using.
That’s what’s so great about Kitch’N Giggles. The meal kit is designed for busy parents to make healthy meals with fresh ingredients with their kids. It’s fun and productive for the whole family and instills a joy of cooking in children at a young age. Yum!
I’m taking a writing class, and wrote a rant last week when I had to deal with the drama of paying out of pocket for my Epi-pen to replace my Auvi-Q. The rant kind of broke me, and maybe some day I’ll post a version of it here, but for now, I want to keep it tucked away in that spot in my mind where the realities of anaphylaxis live.
In the rant, though, I referenced having to wear scarves at the grocery store, and this caught the attention of my workshop peers. They wanted to know more about that experience, and their curiosity piqued my interest, because I’m not really sure what there is to say. You know when you do something that you find to be virtually mundane and someone says, “wow, that’s interesting?” and then you think about it, and you think, “oh, I guess it is interesting.” Like when someone is friends with a celebrity, and to them the celebrity is just their buddy but to the rest of the world, it’s Brad Pitt. (No, I don’t know any of Brad Pitt’s friends).
So, “Wearing Scarves in the Grocery Store: a decidedly curious exploration of what having airborne allergies is like”
When I was younger, only one of my allergies was airborne, but I don’t think I ever used that word. The allergen was, of course, horseradish. My experience of its airborne-ness was that the one time a year we ate it, on Passover, I would leave the house when my mother would grate it. I was fine with it out and grated, but during the grating, no matter where I was in the house, I would get sick. It was the perfect time to do errands before the Passover Seder. It never once bothered me to the leave the house; I actually looked forward to it as my special break to go do errands and report back on what I saw in the ruckus outside.
When I was 15, I began to experience more airborne allergies. Specifically, to cabbage. I surmise, though there’s no way to verify it, that it was the stench of September 11 that affected my body. There were all sorts of FEMA indications that people with asthma and allergies would have worsened symptoms, so it was unsurprising to me that constant exposure to cole slaw that summer on my teen tour of the West Coast led to mild reactions. Mild meaning headaches, dizziness. Nothing too crazy by my standards, but my standards are, well, not typical.
In college, over exposure in the dining halls made my allergens worsen significantly. My list of airborne allergens grew to include all leafy greens. That was fun. When I went to the grocery store, I would simply avoid the section with the lettuce, and stay on the other side of vegetable aisle. If I was lucky — and I often was, as I tended to grocery shop in college with friends or at home with my mom — I stayed outside of the vegetable aisle all together and hung out in the adjacent aisle reading boxes of things. I didn’t always want to read boxes, and often insisted on trying my luck with the vegetables (“oh, I’ll just stand near the tomatoes…”there’s this thing called denial that’s really important) but my friends and family were really good at protecting me from myself.
And then I moved to LA, and lived alone, and had to grocery shop alone. Which was fine for a while. I could run through the aisles quickly, I could cover my nose and mouth if I ever had to pass the lettuce section. And then, it was 2012, and I started this blog because my allergies got crazy worse, and also kale and horseradish got more en vogue, and grocery shopping became harder.
I would go to the vegetable aisle and break out in hives, or have my throat swell. I would pop Benadryl in the supermarket, but then be all woozy while I shopped. It was totally unproductive. I was incredibly fortunate to have a friend offer to go shopping for me — really, N, you saved my life and my sanity a lot, and I am forever indebted — but sometimes I would forget I needed an ingredient and have to go myself. If it was between February and May, and horseradish was in season, all bets were off. I talked to my doctor about options. He suggested I wear a surgical mask. But since I don’t live in Singapore, I really didn’t want to. I have pride, you know? What was I going to do, go to the Whole Foods in Beverly Hills looking like I was scared of SARS?
But then I thought of scarves. Really, scarves are a genius invention. I often wore scarves to work because it was an easy way to dress up a T-shirt for the office, and I’d be damned if I was going to sit at a desk for 10+ hours in a fancy shirt. But scarves can also double as face masks. So, I would put on a scarf if I was planning to go grocery shopping, and in the vegetable aisle, I would lift the scarf to cover my mouth and nose. Not the chicest look, but less awkward than a surgical mask!
Sometimes, though, if I forgot a scarf, or had a last minute trip, I’d run into trouble. I broke down in tears a few times when I realized I wasn’t wearing a scarf and was really hungry and needed food and couldn’t decide what was a better option: eating less or worse food for dinner or braving the grocery store. How fast could I run in and out of the aisle? Six seconds? You should see me shop, by the way. I’m like the Flash. Lightning fast. In and out and don’t linger.
Now, though, I don’t need the scarf. That’s the biggest thing Xolair has brought to my life. Sure, it’s nice to eat spinach salad (usually I pick out the spinach), and it’s really nice to sit in restaurants, but it’s SO NICE TO GROCERY SHOP WITHOUT A SCARF. It’s nice to be able to go to this tiny little produce market with no windows or non-produce aisles and examine my fruits and vegetables before plopping them in my basket. Even with the scarf, I used to just take from the middle (less likely to cross contaminate) and run. I would still avoid shelves too crowded with allergens — like if eggplants, which are absorbent, were next to broccoli, I wouldn’t buy eggplant. Which was hard, because I can’t really eat that much to begin with, and my diet has to stay varied, and eggplant is really important structurally to my meal plans. That’s past Cindy’s problem, though. With Xolair, and its mitigation of my allergies, I can pop by a store on a scarfless whim and buy an eggplant no matter where its staged on the shelf.
In fact, I haven’t worn most of my scarves in a while. Except on airplanes. I don’t want to be caught with stale air on a flight where someone decides to eat wasabi snacks (now sold in LAX!) and tempt fate. But my grocery scarves are now travel scarves, and who knows…some day they might just be scarves…
And side note: the writing group is a Muslim/Jewish writing group, and it’s really interesting to me that I’ve found ways to incorporate scarves into my wardrobe for a totally non-fashion related reason, and many of my Muslim friends do the same to cover their heads for prayer. While I was thinking, “I can’t leave my house without a scarf today” I’m glad to know I had friends-to-be-made that were doing the same, creating a kind of retroactive kinship.
First of all, sorry I haven’t written in forever. I think about it a lot, about how much there is to say, and yet, this part of my journey — the part where Xolair makes life easier but not perfect, where pollen is kicking my ass, where I feel the affects of Prednisone for months and yet am healthier than I’ve ever been — it’s all too confusing for me to focus on.
But then the news comes along, first with an article in the NY Times (I won’t even link to it, it broke my soul too much) about how some woman in Portland is warding off allergies by pre-emptively feeding her kid bamba, a noble pursuit minus the fact that it made me feel like shit for still having allergies (EVEN THOUGH I’VE EATEN MY SHARE OF BAMBA AND THERE ARE ALLERGIES TO THINGS THAT AREN’T PEANUTS AND JUST BC YOUR KIDS ATE BAMBA AND DON’T HAVE ALLERGIES DOESN’T MEAN THEY WOULD HAVE MAYBE NEXT TIME READ THE STUDY MORE CAREFULLY BECAUSE NO ONE CARES ABOUT YOUR PARENTING RULES) and then with the even more devastating news that Auvi-Qs, the epi-pen of the future, has been recalled.
First of all, it’s a bummer that I have to go back to the regular epi-pen, because the one time I needed to use an epi-pen out on the road without the supervision of a doctor AND in an actual life-threatening situation, the Auvi-Q’s voice technology saved me. I was in my office surrounded by coworkers with earphones in, and the thing that perked them up to take me to the hospital was the sound “INJECTION COMPLETE.” I had no breath, no voice to tell them I was in danger, so a regular epi-pen would have stalled the hospital-going process. And given LA traffic and the rule of get to the hospital within about 15 minutes, stalling was not an option.
But more importantly: if you use an Auvi-Q, get an Epi-pen stat
And then the non-PSA reason for this post.
I don’t think of myself as sick. Not usually. And then these things pop up, these things like “tomorrow morning before you even brush your teeth call your doctor to get an epi-pen prescription because your old Auvi-Qs that aren’t recalled expire on 10/31 and the new ones won’t do you much good, and what if you die?” or like earlier this morning, when I went for a walk/jog and had to figure out how to carry my Auvi-Qs and benadryl sans purse. Most people can just take their keys and phone and stick them in one of those runner bands, but I don’t have a runner band for my medicine, and if I need it and I’m without it, that’s life or death.
I’m tethered to this medicine. I’m blessed because there is medicine, and it’s not lost on me that if I had these allergies in the olden days survival of the fittest would have meant I’d be long gone. I’m so grateful there are alternatives like Epi-pen. What a wonderful world of choices and pharmaceutical competition we live in. What medical privilege.
But there’s a harsh reality.
I can die at any moment, not just in the ways everyone else can, but in those ways and then from stray horseradish or whatever other non-poison poisons there are.
Thank you, Sanofi, for the humbling experience.
And hey, do better next time, k? Because it’s late and windy and I want to fade into sleep without confronting the fragility of my human experience.
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/
So I may have skipped the recaps of a few challenges. Not for any particular reason, probably. Just life, and a bunch were repeats. So here’s a quick recap before we get to the shining star moment that has changed my life and one of my ice breaker “fun facts” hopefully forever!
Since Xolair, and post spinach and lox, I’ve challenged sesame, hummus, pickles (cucumbers + dill), and cooked blueberries to great success. I also challenged raw broccoli to a lack of success, but I didn’t get sick, either — just had that feeling where my body said “stop” and my doctor looked at the way I was contorting my face and said “stop” so I stopped and went home sad because I’d been literally dreaming about eating broccoli. But all’s well, because I can still challenge it cooked at some point.
So then, today. We’re about a year into Xolair, which is crazy! I decided to challenge romaine lettuce, because Passover is coming, and it’s been really painful for me to not be able to participate in the ritual in which romaine lettuce (known as maror) is consumed in memory of the Hebrew slaves’ bitter lives in Egypt. Fine, so it’s not the most fun ritual in all of Judaism, but there’s something about being excluded from a religious practice that’s hurtful. It’s hard to describe if you haven’t felt it before. It’s not that I will “get in trouble with God” if I don’t eat maror — quite the opposite — but it feels strange to watch other people do this thing, this important thing designed to build on a connected tradition, and know that doing so can kill you. That this avenue is not an avenue you can take to connect. So I wanted to at least give romaine a try before Passover in the hopes that this year, I can partake in the ritual for the first time in years, and for the first time ever without getting sick.
And, drumroll…I can! And to quote the amazing Gina Rodriguez of Jane the Virgin fame, I can and I will!
Much like with spinach, I began the challenge by turning over a lettuce leaf in my fingers. Feeling its curves. Experiencing its texture. Finally, after singing comforting songs to myself to eradicate my fear of lettuce, I ate it. Six leaves worth. It was delicious! I could literally feel the nutrients I have been deprived of for so long coursing through my body. If that sounds ridiculous, it’s because it is. And I don’t much care, because it’s how I felt. I feel healthy and vibrant and peppy and I cannot wait to eat more lettuce.
I’m limited to six leaves at a time, three times a week, because Xolair is a miracle drug but not a cure. But that’s fine. Six leaves of lettuce, five leaves of spinach, and some tomatoes, peppers, and dressing? That’s a side salad if I ever heard of one.
I’m going to eat salad. Salad that isn’t driven by corn.
I am in complete disbelief, still. But a thrilled disbelief.
For so long, I’ve been introduced to people as Cindy, the girl who can’t eat lettuce. We can leave the emotional baggage of that for another time, but for now…I’m excited to see which random identifying factor people choose now.
Cindy, the girl who lived (after eating lettuce, not after a curse from Voldemort #spoileralert #sorrynotsorry).
POST-XOLAIR FOOD CHALLENGE TALLY
Allergens: 2 (but it was more of a draw)
Up Next: Cottonseed oil
It’s been a while since I last posted — not because I haven’t had much happen (many more foods, many more Xolair successes) but because I’ve been trying to figure out how to recap the massive life change that Xolair has been to my life. We’ll get to that soon, but for now, a snippet.
I’ve had a rough few weeks. A termite infestation in my apartment has led me to be far more allergic than I have been since starting Xolair. For those of you who may be wondering, “Hey am I allergic to termites?” the answer is: could be. Termite feces collect dust at a high rate, apparently, which can exacerbate dust allergies. So it’s been fun vacuuming (but not too much so that the various inspectors won’t see where the termites are/were/come from) and itching and scratchy throating.
The good news is: the exterminators are finally coming for real (I hope) this week. Which means I have to clean out my apartment. Which means I stumbled upon some gems of the past.
Like expired Benedryl.
I have an allergy drawer filled with claritin, allegra, zyrtec, and benedryl. I have tons of benedryl, because I don’t want to run out and my reactions had typically involved me taking 100 mg every 2-4 hours. Or, like a pack a reaction. So I stock up, especially since it’s hard to find the brand name non-liqui-gels where I live, and the off-brand ones aren’t as effective for me and I’m allergic to the liqui-gels.
I threw out a TON of expired benedryl. Which, for a girl who was always running low, is a huge accomplishment. My reactions have been so much fewer, my diet more stable, Xolair so helpful, and my instincts much greater that I simply did not need to take nearly as much benedryl as usual. I also realize I haven’t purchased allerga since 2012. I used to have to take zyrtec and allerga daily and a claritin when things got really bad. But that’s not the case anymore. An empty bottle of Allegra that expired a year ago is all I needed to see that I am done with that phase.
Even though I’ve been sick these past few weeks, in general, I’m getting better. Better physically and better at keeping myself safe. My medicine is expiring without me having to use it.
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.
FOOD CHALLENGE TALLY
Next Up: Vote?
This was the big one. Spinach. A food I hadn’t eaten in years, and never successfully. 27 years of spinach being poison, and today, I willingly consumed it.
In case you’re just finding this blog or don’t remember or just like recaps (have you read Vulture’s recaps of Pretty Little Liars? You have to.), I’ve been taking this medicine called Xolair that has been known to mitigate allergies. I say mitigate, not cure, because 1. it’s an ongoing treatment and if you stop doing it, the allergies come back and 2. it’s doesn’t make the allergies completely go away, it just makes them lessened and builds up a tolerance.
So anyway, after four months of injections, I was ready to see if it was all worth it — if the Xolair made any changes to my IGE levels and body chemistry.
AND IT DID!
I was super nervous in the days running up to the challenge, mildly calmer this morning thanks to certain dream cousins, and nervous/excited/adrenaline-y when I got to the doctor’s office.
I started out by touching the leaves. Previously, being in the same room as too much spinach made me dizzy. Touching it was worse, and involved hives. I ran my fingers, then my palms, over each leaf. It felt like basil. I looked at my hands. They were fine. My arms — fine. My chest — fine. My eyesight was good.
“Do I just like, eat it now? Like straight up put it in my mouth and eat it like it’s food?” I asked my doctor.
“That’s the plan.”
I hesitated, but took a deep breath and ate a leaf.
It didn’t taste like anger, darkness, or sadness, like the previous spinach I’d eaten in my life had. It tasted like a slightly more bitter basil and leafy. I finally get what people mean when they say “leafy greens taste leafy.” They’ve always tasted like the world stopping. The fact that I could now taste “leafiness” and not “sadness” meant I was maybe going to be okay.
Another half a leaf.
“Are you going to eat a leaf every hour?” my doctor asked. “Just eat five leaves, and we’ll see what happens. You will be fine.”
“This is a moment! I’m scared!”
The nurse came in, and I started to cry from excitement. From the fact that my allergic reactions are always immediate — a minute, maybe two after consumption — and I had a leaf and a half of spinach swirling somewhere in my body and it had been five minutes or so, and I was FINE.
I downed the other three leaves while I was still brave enough to.
And then I waited…and waited…and waited…
It was like I had just eaten food. And that was all. Not like I lost my coherence, eyesight, breath, what have you. Spinach was like any other food.
My poison had become food.
The Xolair worked.
I’m euphoric, as my mom says. I feel surreal. I don’t know what to do with this new paradigm. I took a class in college called “Paradigms of Biological Investigation” about how scientific paradigms shift throughout time (the world once thought science said the world was flat, etc.) I feel like I just did a biological investigation that shifted my paradigm. Spinach was once thought to be poison, but instead it’s food.
So next time on Cindy’s allergies…
1. Now that it’s proven the Xolair works, I can eat things I was previously not allergic to before I became allergic to them in 2012 and then unallergic to again after testing. Specifically, wheat. More specifically, beer that isn’t Heineken. Don’t get me wrong, it’s still a fave, but grabbing a craft German beer at lunch today in celebration was JOYFUL. Also, COOKIES. Without traces of nuts of course, but COOKIES.
2. I am now going to challenge the other forbidden foods on my list. Weekly, if it all keeps going well. Paradigm will keep shifting.
3. I keep getting the Xolair once a month.
4. At some point, I’ll have proved Xolair is working enough to cross contaminate sort of at restaurants. Maybe eat pizza? Maybe just EAT AT A RESTAURANT.
It was a shock to me to go into full hyperallergic mode. Now I’m coming out of it more than I ever thought I would. Eating out again was on the table, but eating SPINACH? Who am I, Popeye?
May as well be. I’m definitely not Super Allergic Cindy.
FOOD CHALLENGE TALLY (note: I barely blogged about challenge 38, the 4th tsp of peanut butter because it was boring and I passed)
Next up: LOX (maybe covered in chocolate…story to come another time).