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 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?

Food Challenge 39: Cindy vs. Spinach (aka THE PLAYOFF GAME)

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.

I paused.

“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…

And nothing!

Nothing!

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.

IT WORKED.

It 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.

 

The spinach -- thanks F & K for dropping it off!

The spinach — thanks F & K for dropping it off!

The first leaf. Scared and excited. #spinachselfie

The first leaf. Scared and excited. #spinachselfie

My fifth leaf! I'm alive! #spinachselfie

My fifth leaf! I’m alive! #spinachselfie

FOOD CHALLENGE TALLY (note: I barely blogged about challenge 38, the 4th tsp of peanut butter because it was boring and I passed)

Cindy: 28

Allergens: 4

Next up: LOX (maybe covered in chocolate…story to come another time).

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:

 

Cindy Takes Xolair!

Today was the big day…Xolair day!

I’m a little too tired (understatement) to reiterate all the feelings I’ve had about the ‘lair (is that a thing?) up to this point, so feel free to play catch up in my last post, here.

But the TLDR version: I survived! There was a slim chance of anaphylaxis and guess who didn’t have that reaction! Me!

Seriously, for something that’s kept me awake for months, it was largely uneventful. I’m exhausted from the protective steroids I’ve been on and the lack of sleep that comes with that whole to-do, but really, today was fine. I got a shot, I hung around the doctor’s office for four hours, watched Good Will Hunting for the first time, and went to work in the afternoon like nothing had changed.

And now we wait. In June, I get to challenge foods I know I’m allergic to, in order to see if the Xolair is doing its job of masking the IgE stuff on my cells (I’m not a science person). I keep trying to picture myself eating fish or lettuce or spinach or cabbage, and can’t. But hey, that’s June Cindy’s bridge to cross, and it’s a damn good one.

In the meantime, I’ll keep getting Xolair injections once a month, with steroids, zantac, and zyrtec in my system. I’ll sleep 20 out of 30 nights a month, but it will be worth it to go to a grocery store and not have to wear a scarf and run through the produce aisle. The possibilities! I feel so blessed right now, it’s hard to even describe.

Also, side note…how had I never seen Good Will Hunting until now???

New plan: every month that I do Xolair, I will watch a movie that I really should have seen already. Kill two birds with one stone. Two birds…and no Cindys.

Good Will Hunting

And Two Years Later…Ruminations on Purim, Food, and Other Stuffs

I started this blog two years ago yesterday. Time flies, huh?

I remember going to the allergist for the first time two years ago, getting my test results, and freaking out that Purim, the Jewish holiday that involves not only a meal but an exchange of food gifts (imagine Halloween + Thanksgiving) was days away, and I didn’t know how to eat. A friend of mine and I went to a high-end kosher restaurant. I ordered off the menu and got mildly sick, which made sense given the state of shock my body was in then. Eating was a chore, figuring out what to eat was hard. I clung to my list of allergies at all times, fearful I’d forget something. Things got worse before they got better, and I resorted to a diet of eating the same foods only three times a week and eating nothing — NOTHING — that was prepared by someone other than me or a friend I could truly trust. No packaged or processed foods. 700-900 calories on a good day.

I don’t know how I did it.

Today, for instance, I ate chips, cheese, chocolate chips, soda, matzah, pasta, and canned beans. All foods that were off limits back then (I also ate other food today, don’t fret). I hate to say and am thrilled to say I took that all for granted. It’s become natural to me, again, to eat certain packaged foods. I’ve learned to count in my head (as the three times a week rule still applies). I don’t have a calendar, I just go with my gut, which usually knows when to stop.

I think about how far I’ve come, and what’s next. On Tuesday, I begin a treatment called Xolair. It’s complicated, and in the interest of not spreading misinformation because I’m a blogger not a doctor, I implore you to visit their website and consult your own physician before trusting me. But basically, there’s a chance Xolair can help mitigate my food allergies. There are risks involved (anaphylaxis among them) and it may not do anything at all, but if it works, I may be able to eat some foods I’m allergic to, or at least cross-contaminate with them.

Two years later…and I’m doing something I didn’t think I could: I’m getting better. Or at least trying to.

But I’m also terrified, I won’t lie. I’m terrified of the following:

1. Anaphylaxis. It’s a risk, and I just don’t want to experience it. I’m already on steroids to cope with pollen allergies, and I just want to get back to normal and sleep better and not have a near-death experience that incapacitates me. I’m trying to remember that this risk of anaphylaxis is okay because I’ll be at the doctor’s office, and that every time I eat food I’m somewhat at risk, especially outside of my own home, especially processed food. Every time I go to the grocery store, I’m at risk. So, why am I more afraid knowing on Tuesday there’s a new kind of risk? If anything, its safer. But I think it’s the same reason I don’t get the flu shot. I usually get fever and flu-like symptoms from vaccines, so the idea of scheduling the flu always seems sillier than taking my chances with the actual thing. This is like that, only flu = anaphylaxis. But, I’ll have medical care. Don’t be scared, Cindy.

2. The treatment not working. What a let down that will be. I can see the light at the end of the tunnel and what if it’s not there? Science will improve, surely, and this isn’t my last chance, but right now my eggs are in this one basket and I am very scared that it’ll be for nothing. Can I live this way forever? Yes. But knowing there’s a teeny tiny chance I don’t have to? I don’t want that chance to be taken away.

3. The treatment working. What is the world like without food allergies? What if I could eat fish? What if I counted at catered events? What if I didn’t have to lug 4 epipens with me everywhere I went? What if I didn’t see kids with sticky fingers and get terrified of them touching me? What if people think that since this treatment worked, allergies aren’t real? What if they go away and come back? My whole paradigm might shift and it sounds extraordinary but it’s also like waking up one day and realizing you don’t speak the same language anymore. That the world you live in is at once the same and totally different. It might be AMAZING. I hope it is. But it’s scary, too. Will I become a binge eater? Will I like kale? More importantly, will I lose my sensitivity to others? I never want to eat nuts on an airplane. But if I can eat like a normal person, will I forget the tricks of the trade that keep my former peers safe? I have a sixth sense now. I’m like a food mentalist, tracking motions of foods and eating behaviours. Will that go away when I don’t have to care? And if so, will that jeopardize the people around me and the advocacy I’ve begun to treat as second nature?

All of these fears have occupied my headspace for months. I have found ways to talk myself out of each one. They even largely contradict each other. But they are swimming in the back of my mind.

Two years ago, I was terrified I’d never adjust to a new diet and a new set of rules and weekly food challenges. Now, I’m given the chance to not only go back to before that — the days of carefully eating out, of having 20 allergies instead of 50 — but to a place I’ve never been. I can do this.

Maybe next Purim, I will be able to partake in any feast. I will be able to give and receive Mishloach Manot baskets of food without fear. I’m lucky — this year and last, my friends and family went above and beyond to include me in the holiday — my parents had a friend bake me food I can eat, my friend hosted a feast I could partake in, and friends gave me unconventional food baskets tailored to my diet in the nicest ways. I feel bad wanting more, hoping that next year it will be easier on me and on them, because I’ve already been given so much and treated with such generosity. And yet…I’m excited.  I’m excited to not have to be an exception or a hindrance or even noticeably different.

These last two years have been rough but I’ve settled in. I’ve learned a lot about strength, food, friendship, family — not in that order — and it feels at once like no time has passed and like I’ve lived this way forever. So whatever’s next…whichever fear is realized…I know I can face it.

New York Times: Can a Radical New Treatment Save Children With Severe Food Allergies?

This New York Times article was shared with me by a number of friends and family members (thank you, guys!).

It explores a new trial that aims to desensitize children with severe food allergies by feeding them tiny amounts of the allergen daily until they can tolerate a little bit of the allergens. It’s not black and white in terms of how it works, it’s not a quick cure, it doesn’t work for everyone, and it needs to be seriously maintained (eating the allergen every. single. day. in controlled amounts to ensure that you don’t get sensitive again — I don’t know if eating one peanut every day, but not more, is better than never eating a peanut again; both seem stressful and I’m already used to the latter).

It’s an interesting article, and for the kids for whom it works, I couldn’t be happier.

But no, it will not work for me, not yet. Because I am an adult without asthma and with many non-common allergens. So before we all start cheering that there’s a cure — there may be a cure for my future children if they are so afflicted — the science and the research is not there for me, not yet.

Still, the article was incredibly meaningful to me. I cried a few times from certain passages that I’d like to share with you. I don’t cry about my allergies often — I do my best to stay sunny, positive, and excited — but since the cottonseed oil incident, I’ve been quite frustrated with my body and many of the people around me who don’t “get it.” And then I remember how kind it is of my body to have a) survived and b) not been in anaphylactic shock of that nature ever before even though I’m 26, and how kind many of the people in my life are and how much they do get it. Re-enter sunshine, etc…but some things just still hit super close to home:

Food allergies are a peculiar disease, because most of the time the child is not sick — indeed, she may be bursting with health — but is in omnipresent danger. Statistically the chance of dying is slight. Although the number of emergency-room visits for anaphylaxis caused by food has gone up significantly in the past decade — to as many as 90,000 in a year — only 100 to 200 people die (although statistics are difficult to collect because such deaths are often coded as cardiac arrest). Even for a severely allergic child like Tessa, the mortality rate is estimated at roughly 1 in 1,000, because parents of such children tend to be extremely careful. But food allergies amplify a kind of fear every parent experiences — of a child dashing suddenly into the street and, just like that, being gone. Your child is always playing near a precipice that is visible only to you: you may be able to keep her from falling off, but you can never move her away from the edge.

Like a preacher, can I get an AMEN? I am not sick. I do not like being asked “How are you feeling?” on a constant basis. I am feeling fine 99% of the time. If I’m not eating an allergen or around an airborne allergen, or within a week of an anaphylactic attack, I am feeling just like you. I am not sick, I am not getting better every day, I am healthy and robust and alive and I don’t want to be treated like a patient. But I am in omnipresent danger. That’s the best phrase I’ve ever heard to describe this. At any moment, I can become sick. If you eat a salad and I happen by and it’s the wrong moment, I will get sick. I cannot control that. I cannot control where there is food and who is eating it and how my body reacts to it. Unless I live in a bubble – which I will not – I will always be in danger of dying. It’s unlikely, per the statistics above – but it’s a possibility. It’s analogous to driving on a road where you are the only sober driver and everyone else is a drunk driver. You might be a good enough driver to navigate the freeway free-for-all. But you might not be, and every time you get into a car in this drunk driving parallel universe, which is every second of every day, you have a chance of dying and there ain’t nothing you can do about it. I walk along a steep and rocky cliff. And it’s a cliff that is absolutely invisible to everyone around me except the few people who have been around me long enough to get it and care. Because it is invisible, people don’t believe in it, and they sometimes purposely push you to the edge of it (by asking you to touch food, by throwing food at you, by hiding food in your food without telling you to test you) and sometimes they accidentally knock into you and don’t understand why you’ve fallen, and don’t offer the hand to pull you up. (This happens to me a lot. People know that if they eat salad around me I will get sick, and still do it, and then get angry when I am either sick or ask them to stop eating salad). To put it differently: I have an invisible disability. You cannot see my wheelchair. It doesn’t mean I don’t deserve a ramp.

Early one evening, I gave him a nibble of Havarti — which I chose because it somehow struck me as particularly innocent. Immediately he began to fuss and rub his eyes. I stepped into the bathroom to get him some eye drops; when I returned a few seconds later, I almost didn’t recognize him. It was like a moment in a fairy tale when a child is transformed into a beast: his face was swollen and covered with scaly red splotches, and his eyes looked small and sunken. We ripped off his clothes and saw that horrible scales were spreading down his torso. He began to wheeze and gasp for breath. We threw him in the car and drove to the hospital, a few minutes away.

“Next time,” the E.R. doctor told us, “just call 9-1-1.”

Next time? I thought, staring at him with horror. What kind of parents do you think we are? There will never be a next time. But there was: a next time and a time after that and a time after that.

It doesn’t matter how careful you try to be. It doesn’t matter how responsible you try to be. There will always be a next time, and a time after that, and a time after that. My nurse said to me this past Tuesday when I left work in the middle of the day to get some epi because my throat started closing and swelling when I ate my lunch after being exposed to a coworker’s salad: “Next time, let’s give you the junior epi, since you handle that dose better.” I said, “I don’t want a next time.” She said, “Ok, but next time, we’re going to give you the junior epi.” I persisted, “But I don’t want a next time.” (I’m not the world’s most agreeable patient). She replied, “Right, but still, next time, we’re going to give you the junior epi. Actually, next time give it to yourself and then come here. Don’t wait like this again.” I said, “I don’t want this to happen again.” (Okay, maybe I’m downright annoying). She said, “You’re cute. It will.” And left the room. She’s not wrong. I am adorable, and I will have more allergy attacks. Such is my lot in life.

Kieran began treatment last March, the way all the children in the trials begin, by verifying his allergies through a “food challenge,” in which just enough of the food is given to provoke a small reaction. His first challenge was to cashew — a nut we had been told he was allergic to based on blood work but which he had never actually eaten. I knew that Nadeau had done more than a thousand food challenges and rarely had to use an EpiPen, but I still felt sick with dread. He began at one milligram (1/360 of a cashew) and then, an hour later, a larger dose. After a few more doses, I was beginning to wonder if he actually had a cashew allergy. Then he began to cry and flail his arms, as if he had been dropped overboard and was trying to keep from drowning. One by one over the next 20 minutes, the maximum doses of different medications failed to halt the hideous metamorphosis, and they had to use the EpiPen.

Kieran’s food challenges are slightly different than mine because he’s a child, and come on, “Breakfast with Cindy and Dr. E” is it’s own little show, but some things are the same.  Like when I have my food challenges, and everything is going dandy until it’s not. The above bolded sentence is exactly how I responded to avocado at first. Totally fine, maybe some faces here and there, and then boom. “I don’t feel good, I don’t want any, I’m done,” I whined and pushed it away and got some treatment. I felt like I was drowning but like Dory, I just kept swimming, and asking questions, and pushing the damn food away. If, dear readers, you ever see me angrily thrust food away from me the way you would push a person blocking the subway doors, make sure I take Benadryl. I might be in denial, but that is a sure sign I’m having trouble.

But profound change is profoundly unsettling. Tessa lost a defining aspect of her identity. Would she not be special anymore? Would she get less of her mom’s attention? Tessa still wouldn’t eat any of the food that was formerly unsafe at parties or at school. While Tessa told a few close friends about the treatment, she was reluctant to reveal it more widely. When I asked her why, she pursed her lips and studied her nails. Was she afraid that it would make people doubt the severity of her former allergies? “Yeah,” she said without looking up.

I am terrified that someday I will be able to eat lettuce. I am terrified, because I know I can’t eat it now, but if in ten years from now there is an adult cure and I can eat it, people will think I’m a liar. They will think I am mentally ill. I will think I was mentally ill. I will think I wasted years of my life. I know it’s not true, I know things get cured, but this goes back to the invisibility of it all. If you have an invisible disease and it suddenly goes away, and you were the only person to see it in the first instance, why should anyone believe you had it in the first place? How do you pick yourself back up from the loss of an identity? And it’s an identity not by choice, but by mere fact that every time anyone socializes around food with you, you have to mention your allergies to keep from dying, and since people tend to interact around food, when people interact with you that’s what they know. I am “Cindy, the girl with all the allergies.” I had a short period where I wasn’t that, but in certain times I have to be, and now is one of those times. If I were to become “Cindy, the girl who doesn’t have food allergies anymore but who made us not eat salad around her when she did have them,” I could almost hear the eyes rolling, hear the minds thinking “what a c***,” hear the skepticism, and hear the judgement. And I can just hear the little kid who isn’t cured yet getting made fun of because people think he’s lying because they think I was lying. Tessa has a huge weight on her shoulders — she’s the kid who is teaching her peers about food allergies. And now they are getting a mixed message, and among other things, poor Tessa doesn’t want to be responsible for the death of a little kid who wasn’t as lucky in the trial as she was. Because she knows better. And she knows most other people don’t.

The thought that his treatment serves the larger purpose of the trial seems to help him to get through it. In the fall, he was scheduled for a procedure in which a camera is slid down his throat to photograph his stomach to see if medication had been effective. When Justine told him it would have to be postponed because he had a cold, he said, “But I have to do it to help the research for other kids, right?”

Justine was startled: she had never told him that. “I don’t know where he comes from,” she said. “He is very focused on helping other kids through his hardship.”

I’m not in a trial, but I do keep this blog and speak up about my allergies so that the next generation won’t have to. So that the kids who don’t know what allergies are like beyond their peanut-free schools and birthday parties have a resource for handling the less-friendly workplace sphere. So that the kids who aren’t born yet don’t have to watch their parents fight for peanut-free birthday parties. So that people will recognize that this is a reality. I log this and I write this and I’ve made it my identity so that I can survive and get through it but also because I want to help the other kids. Because as much as I like the “specialness” of my doctor saying, “I’ve never seen anyone react that fast, that severely, to that little of an allergen” or “You may have broken a record for the most severe positives on a scratch test in the least amount of time!” it makes me feel alone. And I know I’m not, and I want whoever my compatriots are to know that they aren’t, either. And if I can raise awareness in the meantime, and minimize the invisibility of the cliff, then maybe it will all prove worthwhile.