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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Auvi-Q Recall…And What It’s Like To Be Tethered to Medicine

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.

http://www.news.sanofi.us/2015-10-28-Sanofi-US-Issues-Voluntary-Nationwide-Recall-of-Auvi-Q-Due-to-Potential-Inaccurate-Dosage-Delivery

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.

Gratitude

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.

#gratitude

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).

A Sketch That’s Funny For The Wrong [IMO] Reasons, A Podcast, and Other Thoughts

It’s a stream of consciousness type of day, so don’t expect any order to this post. Order’s overrated anyway. Not overrated? David Wain and Michael Showalter’s new romantic comedy spoof “They Came Together” starring Paul Rudd and Amy Poehler, available in limited theaters and on demand. God, they are comedy geniuses. No, that has nothing to do with allergies. Except maybe it does. There’s a scene

[SPOILER ALERT]

in which Amy’s character gives her order to Paul’s character at a coffee shop and it’s completely wacky and overdone and impossible to remember except he totally remembers it and it’s definitely love, and I feel that way sometimes when I order food. She was being spoofy, but I completely related because I’m a completely awkward food orderer, and any man who can remember the random nuances of my diet is AOK in my book. Or a keeper, as they say. (Speaking of, did you guys hear about the travesty that is muggle quidditch players getting too cool for Harry Potter?)

[END SPOILER ALERT]

Sort of related to Harry Potter — well, very related to Harry Potter — I do this podcast called Common Room, where all things pop culture (especially “geek” pop culture, like HP) and food, fitness, and fashion converge. First of all, totally listen to it! Second of all, one of our segments is called “Customizable Cooking” where the group of us — a bunch of girls all around the world, from New York to Australia and inbetween — make the same recipe but tweak it in our own unique ways. In a recent episode, we recreated my gluten-free vegan pumpkin oat muffin recipe, which as you may know, has absolutely saved my life. Listen to the episode here (and discover the importance of giving the correct measurements when telling people a recipe).

I recently also made the original cookie recipe the muffins are based on, but as a sheet cake. They came out delicious, if not ugly.

Pumpkin Cookie Cake

One giant cookie!

It’s hard to believe that I invented that pumpkin recipe more than two years ago. Also two years ago? I learned that generic Benedryl doesn’t work as well as the real thing. Today, I dug into the pocket of the blazer I was wearing and discovered some generic Benedryl. I don’t think I wear that blazer very often.

Another thing I don’t do often is eat at communal dinner parties. Much like the characters in this Fourth of July sketch (watch below). In the interest of not spoiling the punchline, if you are a loyal follower of my allergies — or just know the basics, leafy greens, fish, horseradish — you should get why I think the ending is ironic for exactly the wrong reasons. PSA: people are allergic to more than just the popular things, people.

I’m pretty sure I’m still scared of eating spinach. One week from right now, I’ll know if I can eat spinach, and more importantly, how this Xolair thing is working. Last night I had a dream where the vegetables from Veggie Tales attacked me. Like verbally and emotionally. Mostly the tomato. Which is weird, because I can eat tomatoes. I’m not 100% sure if it’s anxiety about spinach or if I’m just reliving my senior thesis about Evangelicals in pop culture because The Leftovers premiered this week.

Which is another thing you should watch.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Gluten Sensitivity — Not A Real Thing?

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

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

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

A few examples of what I’m talking about:

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

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

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

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

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

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

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

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

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

And so on…

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

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

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

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

Colleague: I might, how would I know?

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

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

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

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

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

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

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

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

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

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

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

Cindy: So you’re eating gluten.

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

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

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

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

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

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

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

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

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

 

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.