Wearing a Scarf in the Grocery Store

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).

Me, in one of my scarves.

Me, in one of my scarves.

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.

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Food Challenge Round 46: Cindy vs Lettuce

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.

WHAT?

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

Cindy: 7

Allergens: 2 (but it was more of a draw)

Up Next: Cottonseed oil

There is lettuce in my hand. And no hives on my chest. This, my friends, is the magic of Xolair.

There is lettuce in my hand. And no hives on my chest. This, my friends, is the magic of Xolair.

Food Challenge Rounds 20 & 21: Cindy vs. Apricot and Cottonseed Oil

I didn’t get a chance to write about last week’s food challenge – dried apricots – but that’s pretty ok, considering how uneventful it was. Basically, I ate a bunch of apricots, talked to the doctor for ten minutes, went home, and went on with my life. You know, the way normal people eat food. They just eat it. It was cool to experience that with a food I’ve been terrified of for basically my whole life for no other reason than I can’t tell the difference between an apricot, a peach, and a nectarine and that unsettles me.

So woohoo! I can eat apricots! Celebrate good times, come on. Or something.

I'd rather eat an apricot than cottonseed oil anyway.

I’d rather eat an apricot than cottonseed oil anyway.

Today’s cottonseed oil challenge was a whole ‘nother story. One that starts with two bites of an omelet fried in cottonseed oil and two baby bites of a sweet potato drizzled with cottonseed oil and ends with anaphylaxis.

This was the quickest and most severe reaction I’ve ever had. I started coughing at the second bit of the sweet potato, but figured that sometimes people cough, and took a second bite of the egg (I was alternating sweet potato, egg, sweet potato, egg to make sure I didn’t eat too quickly). After that second bite, I pushed the tupperware away and started panting. The doctor looked at me and kneeled down to be eye level to my sitting in the office chair and asked what was happening.

“Help” was all I could say.

He ran to tell the nurse to prep the epi injection, and came back and said “Tell me what you feel.” Through gulps of air, I explained that I felt like I was running a marathon but I didn’t run marathon and the air was not coming out and I was scared.

The nurse shot me with the epi and then took me to a room for a Benedryl injection. I stayed there shaking for a little while and then poked my head out because my throat started feeling tighter and tighter. They switched my room because the patient occupying the closest room to the doctor’s actual office had finally left (ok, so it was 20 minutes and that person is entitled to be a patient, too, I guess) and gave me more epi. So that meant more shaking but some major relief.

I just sat on the exam table without moving for a really long time, staring off into space, unable to lie down or close my eyes because I was too out of it. Finally, I mustered the strength to take a nap. I woke up periodically for more medicine – some inhaled steroids, more Benedryl – but essentially just lay there sleeping. I’d say “dead to the world” because that’s the accurate idiom, but considering I could have actually died that doesn’t seem so cool anymore).  The nurse brought me some extra sweaters and jackets because I was freezing — it was about 80 degrees in the office and I could hear all the patients complaining about the heat and the nurses on the phone with the building to fix the thermostat, but I was freezing in my t-shirt, sweater, and shearling jacket.

Finally, at around 1pm, I woke up and had enough strength to stand up. I’d been at the doctor since 7:30am. I started eating at about 7:40, and got sick at 7:45. That’s a long time to be at the doctor. They joked that I worked there, and never one to miss moment, I suggested they pay me for my time. They responded they charge by the hour, and we all had a good laugh.

I had enough strength to drive the mile home, which was good, even though the valet guy who is the best in the world offered to drive me home, and  told me he would drive me home at any point if I was this sick. Such a good hearted man.

I got home, called my mom, and slept on and off for the next 5 and a half hours. I’d be perfectly awake one minute, just lying down, and the next minute, I’d look at the time on my tv and realize I’d been asleep for 40 minutes. I guess 100mg of Benadryl, 2-ish doses of epi, and not breathing will do that to you. Kind of knocked the wind out of my sails, but hey. I learned something.

Actually, I learned a few things:

1. I can never have Pringles again (until the food industry realizes cottonseed oil is so unhealthy and they switch to canola)

2. A hello kitty bandaid makes everything better. I’ll totally take Benadryl injections into my hip if it means getting some hello kitty fun.

3. Passover is my favorite holiday even though it’s really not accommodating of my allergies. Like, seriously? Maror and cottonseed oil? Come on.

4. Epinephrine really does work and it’s not scary. Not breathing is scary. Breathing is great.

5. Rapping Nicki Minaj is a good test to see if I can breathe. Because I tried it quietly at the doctor’s office, and only got to the line “he ill, he real, he might got a deal” before I started panting — and that’s only the 5th line.

FOOD CHALLENGE TALLY

Cindy: 14

Allergens: 7

Next Up: Grape Juice (for sulfites and passover. and bc I’m 99.9% sure it’s fine since I have other wine and grapes and raisins and there’s no way I can do a rough challenge while I recover from this lovely bout of anaphylaxis).

Food Challenge Round 14: Cindy vs. Wine (Sulfites)

It’s fitting that on the day I drink wine at my doctor’s office at 7:30am, I also spend the rest of the day at the Cougartown set*. While I drank out of a plastic purple Solo cup and not Big Joe or Big Carl, I know Jules Cobb would have traded places with me any day. In fact, if she or any of the Cul de Sac crew had my list of allergies, I’d bet the first — and not fourteenth — challenge would be with wine.

*I was not actually shooting Cougartown, we were just shooting an upcoming webseries basically in their space. But yes, I saw almost the whole crew (minus Andy and Travis) as well as the writers, and damn, those are some fantastically talented people. 

What would my doctor have said if I brought Big Joe to his office?

What would my doctor have said if I brought Big Joe to his office?

Anyway.

I challenged wine this morning because in early April, towards the end of my original 30-day elimination diet, I had some grape juice and had a pretty bad reaction. White wine had less of a reaction but still an evident one. On the eve Passover (the holiday where, like, you know, you drink 4 cups of wine, but whatever) the doctor told me I was no longer allowed to drink wine that had added sulfites, as sulfites commonly cause a chemical reaction that’s similar to an allergic reaction (but NOT an allergic reaction. You can’t be allergic to sulfites. Just intolerant). So I’ve been drinking Elima wine, which is kosher no added sulfites wine that costs an exorbitant amount and while it’s decent, is not worth a weekly purchase for kiddush, the Sabbath blessing over wine. Especially because it doesn’t hold overnight. It’s missing the preservatives so it doesn’t quite preserve.

After calling the Herzog winery to find out if they use isinglass (ie fish bladder) in their wine, like many wineries do, I found that isinglass isn’t kosher for Passover, so they don’t use it, and therefore, I can safely test their wine. I can’t get anywhere near fish, of course. Side story: a few of weeks ago, someone in my office ate fish and I broke out in hives and had throat tightness for 2 days. That was fun. It also knocked fish bladder clear off the list.

So this morning, I brought a bottle of Jeunesse, a cabernet sauvignon to the doctor’s office, poured a Solo cup, and drank wine while everyone in the office — doctor, nurse, patients — all commented on how funny it was to be challenging such a thing. “I could never be allergic to wine, how hard.” “I could never drink wine at 7:30am.” “Why try a red, chardonnay is so much better?” “Are you kidding? Chardonnay is gross. If you can only have one wine, please say it’s a cab.” “You really can’t drive home after one glass? You’re such a lightweight!”

The challenge went well, I started the morning after what was a pretty stressful week with a glass of wine and a nice buzz, and chilled at the doctor’s office until I DUI tested myself by leaning my head back, standing on one foot, and touching the tip of my nose with both pointer fingers and determined I was safe to drive. The mile back to my house, anyway. I needed some more water, Rice Chex, and couch time before I could head to work. But gotta say — there’s nothing that a good solid glass of wine in the morning can’t fix.

Well, maybe some things. But it’s a start.

AND, allow me this Jewish pride moment, if you will: I can officially do both blessings on Shabbat (wine and bread) without too much trouble! It’s been such a pleasure this Chanukah to have latkes and not miss out on the traditional food, and to know I can have that back week after week is reassuring and calming. While I’ll never be able to eat all the Passover foods (bitter herbs are deathly herbs to me), and cheesecake is sort of out of the question since most cream cheeses are made with gums so Shavuot is shot, and I can’t have new fruits on Rosh Hashana (unless I invite my doctor over…) I’m grateful to have the ritual foods of some Jewish holidays. And of Thanksgiving. Because there’s not a single Thanksgiving food I’m allergic to at all, nothing to even challenge.

FOOD CHALLENGE TALLY

Cindy – 10

Allergens – 4

Up Next – (Why do I even bother, I never listen to my plan!) But let’s go with avocado.