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.

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?

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.

Food Challenges Round 31- 35: Cindy vs. Peanut Butter and Pretzels, Sauteed Onions, Special K, White Wine, and Almonds

Lots of food challenges to catch up on. Things have been hectic with a ton of weddings, switching jobs, and holidays. But here’s the deal:

Most of the challenges went swimmingly. I can now have 3 tsps of peanut butter, Utz Halloween pretzels (in case the factory processes the regular pretzels differently), ALL ONIONS (the third challenge of onions opened all those doors up — and shallots and leeks, too!), Special K cereal (and cereals with similarly low trace amounts of wheat, though I should still avoid them if I can), and sauvignon blanc.

I can’t have almonds, as I learned today. Today, I bit into the top of an almond, chewed it, paused, and put the rest on the allergist’s desk. “No more. I want medicine.”

My lip was tingling and my ears were starting to burn. I’ve gotten really good at sensing the beginning of a reaction. The other foods just felt like foods when I tried them, but this almond tip felt like poison and anger. But now I know: I avoid traces of nuts for a reason.

Thank God I didn’t need epi – just benedryl, steroids, and sleep (why is it that steroid injections don’t make me as weird as the pills?). My throat is aching, my face is mildly swollen (I can feel it and I can tell, but unless someone’s used to my face, they wouldn’t know that my right cheek is over-puffing and throbbing). But I’m ok. I caught myself before I got too far. Now I know — no nuts.

Maybe when I’m off the meds I’ll console myself with a nice bottle of wine, because I CAN.

Sidenote: tonight is the Jewish New Year for trees, and it’s traditional to try new fruits and to eat almonds. Good timing, right, Cind? Guess I’ll just find a bonsai tree or something to celebrate.

The tip of one of these had me sleeping all day.

The tip of one of these had me sleeping all day.

It’s That Season Again…Not Holidays, But Horseradish

First of all, sorry for the TERRIBLY LONG OVERDUE post. Seriously. So much has changed since I’ve last blogged, and I’m sorry I’ve been too busy to keep you all updated. The food challenges are going well (yes, I will recap them, no I haven’t any failures as of late!), and life is generally good.

But I’m inspired to blog tonight because I’m frustrated with my body, and blog and body share two of the same letters, so I figured this was the answer.

I’ve decided I’m entitled to a handful of “woe is me” posts a year, so consider this the (hopefully) cap of 2013’s.

It’s horseradish season again. I remember this starting last year in February, and I was all mentally prepared for that — the halting of grocery shopping, the need to rely on others, not really eating half the foods I can eat because they’re too close to horseradish in the supermarket, the fear of impending death every time I went into Whole Foods. That was February Cindy’s problem…or so I thought.

On Thursday night, I went to Whole Foods to buy an eggplant, and they were next to mushrooms and on top of lettuce, and I called my mom asking how to navigate the situation when I noticed that diagonally under the eggplants was my enemy: HORSERADISH. Like, a ton of it. Where it usually isn’t, at least not in that abundance.

So I ran. I ran away from the offending root toward the fruit section where I saw pomegranates that I’m mildly airborne allergic to and ran farther and started to cry.

I didn’t leave the store with an eggplant. I figured out how to make eggplant/zuchinni parmigiana, though, so WIN! (I’m trying so hard to be peppy and positive. Probably helps that I just slayed Superbass in my totally sane “rap to see if you’re breathing well” diagnosis).

Anyway, I cried about the horseradish and its early resurgence into my world for a while. Not just horseradish, but this reminder that the littlest things can be so hard for me, for all of the people who have food allergies, especially airborne allergies. That going to regular places is a life-risk. It’s not like, “Oh let me grab some groceries.” It’s “Oh, I need to grab some groceries, hope I make it out okay and can spend the rest of my day as planned and not in bed, or worse.” Plus, sometimes I just want to eat. And when my airborne allergies make it harder to eat the things I can eat because of their proximity or my getting sick, it’s just horrible. I feel helpless and hungry.

Tonight, I wanted to spend time with a friend who was hungry, and I accompanied her to a restaurant. I was fine staving off my own hunger to join her where I couldn’t eat. That’s par for the course, and I’m fucking Tiger Woods of this restaurant golf metaphor. But then I wasn’t fine. I could feel the avocado and lettuce of her salad on my tongue. I’m usually okay around those if the space is big enough, but those allergies are the kind that you don’t know until you know, and I knew. We moved outside where I could get more air and less avocado. But to no avail. My tongue was prickly, my throat was hurting, my thoughts slowing down. I felt like I had at the moment before my doctor stopped me at my avocado challenge way back when.

So I came home. In tears. Because I wanted to hang out with her. I wanted to then come home and eat dinner. But I have to wait for the Benedryl to kick in first so whatever I eat next doesn’t get conflated with the previous poisons. Because my body does that. It loves to have allergic reactions all the livelong day to foods that are generally fine because it lives on the tipping point. If my body were a Lady Gaga song it would be “The Edge of Allergy.”

I should be able to be around my friends when they eat without dictating their diets (and making them feel guilty for something they didn’t do wrong — J, you are TOTALLY entitled to your dinner, and if you feel bad for even a second I will feel worse). I should be able to have normal social interactions. I should be able to eat dinner when I damn please and grocery shop, too, and get along just fine. And 99% of the time, I do.

But it’s horseradish season.

And I’m the one who has to hibernate.*

*I may be overdramatizing. But hey. It’s a good closer.

Cooking for Sukkot Part 3

Tonight, I finished the pre-holiday cooking. It was pretty uneventful, which is good, because I’m hella tired. 

Curry Chicken

Curry Chicken – I sprinkled on cumin, turmeric, coriander, ginger and some canola oil. I couldn’t tell you how long I cooked it for if I tried. I was seriously thisclose to falling asleep when I put it in the oven, did a bunch of things around the house anyway, prepared the upcoming carrot cake and then eventually checked on the chicken and it was done. Maybe 40 minutes on 350? Maybe more? Seriously, who knows?

Carrot Cake

Carrot Cake – followed this recipe minus the walnuts: http://www.bettycrocker.com/recipes/carrot-cake/64acd01e-14ad-4e03-9fe1-b62b03ff4667. Can’t remember the last time I baked following a recipe exactly. Hope it came out good.

The good news is, with all the cooking, I still fixed a sukkah, ate dinner (for reals!) and watched Fox’s new comedy block minus The Mindy Project. God, I missed New Girl. 

Still to cook (but won’t blog because it’ll be sukkot already):

grilled asparagus, peppers, zuchinni, eggplant

corn on the cob

green beans (sauteed with garlic)

lentils

pineapple fritters (fried pineapple coated in garlic, cayenne pepper, paprika…you can also bread it if you want but I’ll likely be lazy).

roasted pears (seasoned with tarragon, ginger, and brown sugar; might not do the tarragon this go-round)

roasted carrots (seasoned with salt, pepper, and rosemary)

Grill pans are the greatest invention of all time. If you don’t have one, buy one. Best gift I ever got. Except maybe an M&M dispenser filled with M&Ms in the exact color order I wanted without my knowledge. That was a good gift, too. 

Less good gift? The hives that keep appearing on my neck sporadically. Kind of think they’re exhaustion related since I’m not eating. Are exhaustion hives a thing?

No matter. Grill pans, chicken, carrot cake, and half my cooking done means I can rest happy.

Seven Days of Prednisone

Today marks a week since my anaphylactic episode. I’ve been on round the clock benedryl and prednisone for 7 days, and I have to keep doing that until Tuesday. Luckily, I’m getting used to the weird side effects. Like, random muscle pain that makes me scream “MY LEGS!” or uncontrollable swinging of my limbs (thank you to my friends and coworkers who are kind of enough to grab hold of said swinging limbs and steady them). Or, you know, crying over things like dropping a paper towel roll, getting stuck in traffic, reading a long email, or having to carry grocery bags out of my car. And totally forgetting where I am and what I’m doing – especially when driving and thinking “Hey, I wonder why all the cars on the other side stopped moving. Wait. Where am I? I AM IN A CAR! THE LIGHT IS RED! I HAVE TO GET OUT OF THE INTERSECTION!”

Why do I forget that I can’t drive on prednisone? Maybe because prednisone makes me forget things.

I have utterly no clue how to sleep anymore. My body wants to, it’s all like “oh, sleep sounds cool” but then it just won’t. Or I sleep and I wake up like an hour later thinking the whole world is different, forget where I am, why I’d been sleeping, and how to fall back asleep.

All that said, I think I’m pretty high functioning for the amount of medicine in me. I wrote a bunch of a script, I cooked an entire shabbat meal, I went to Disneyland (though I had to get off Tower of Terror, because my throat started swelling as I buckled in, and I thought that if god forbid I needed an epipen while on Tower of Terror, it might be the most dangerous thing ever. Or, as my friend S put it “your epipen would fly in the air, land on some random Disney person and they’d get sick and you’d die on the ride.” For the record, I once rode Tower of Terror 9 times in a row and orchestrated a timed photo for the car, so no, rude Disneyland patrons, I did not have a panic attack. I was not scared of the ride. I was scared of anaphylaxis on a ride).

I bought a stuffed fox to feel better. I named him anaFOXlaxis because I’m supremely clever. I don’t know why a stuffed animal fixes things, but this fox totally does. S was nice enough to drive way out of our way to go to a hallmark store to get one (fyi: target sells bad stuffed animals). And, the fox is made by some company that specializes in stuffed animals that come with books to help people cope with hard things. Good job, fox. I think everyone should get a happiness fox. It’s like a seeing eye dog but you don’t have to take care of it.

Anyway, this post is probably very incoherent. But, my hope is that if you’re googling “why are my limbs swinging prednisone” you’ll find this post and be like, “Oh, I’m not alone, I shouldn’t drive, and I should buy a stuffed fox.”

Is it Tuesday yet?

AnaFOXlaxis, aka Foxy Brown

My Immune System Is An Overachiever (or: I Can Have Peanuts But Not Allergy Shots)

If I ever questioned if I was special, I got a pretty clear YES this past Thursday.

It was my first allergy shot. I was totally not scared, because the chances of dying from an allergy shot are about 1 in a few million. They kept me for monitoring to see if I’d have a “bad” reaction, which they explained would be runny nose, itchy eyes — you know, general pollen reactions. Piece of cake, right?

So about ten minutes after the shot, I notice my throat hurting and I was hoarse. The doctor suggested I take an extra Zyrtec. Ten minutes later, when that didn’t help and my tongue couldn’t fit behind my teeth, the doctor suggested Benedryl. We debated epi, but because I usually get weird after epi (shaking, groggy, dizzy, tired), and it was just minor swelling, we thought 25 mg of Benedryl plus the Zyrtec would be enough. A few minutes later, I was 30% better and the doctor said I was good to go, just monitor it and time would heal it. It felt like a standard reaction, so I went off to work.

Fast forward to an hour or so later, and everything suddenly got worse. Throat tightness increased, I was basically incoherent. The doctor has left the office by this time, but I called the nurse and she said to take more Benadryl, 50 more mg, and take another 50 two hours later.

An hour and a half goes by and I needed fresh air. The tightness was getting crazy. I slathered on vaporub and when it didn’t help, I went for a walk with a coworker. Thought moving would help relax me. I can’t remember if the nurse called me or I called her, but I spoke to her and she suggested I take the extra Benadryl right then, and that if I felt any shortness of breath at all to use the epi and not question it. My doctor was on a plane, so I shouldn’t wait for his instructions, just use the epi and don’t hesitate.

We finished the walk, and a little bit later, I went to the restroom. As I was washing my hands, I tried to breathe and I couldn’t. I gulped for air but nothing came. This was the moment. Everyone always says when you need epi, you know, and I knew. I ran out of the bathroom and jabbed myself with my Auvi-Q. My first-ever self administered epinephrine injection! I was so proud of myself for having the fight instincts instead of the flight instincts. My body couldn’t breathe but it knew it needed epi. And I want to thank Auvi Q for its voice instructions. My coworkers turned around as soon as they heard a loud “TO INJECT…” All I had to do was look up and squawk out “hospital” and my coworker ran to get me and take me to his car.

The epi kicked in, and we drove to Cedars Sinai. Not the closest hospital, but I figured it was faster to drive somewhere we knew than to google something we didn’t. It’s only about 15 minutes away anyway, though technically Hollywood Presbyterian is closer. But I felt safe at Cedars. It’s a brand name for a reason, right?

MOST CROWDED HOSPITAL EVER. I had to wait a little bit to be seen – not that long, though, anaphylaxis does cut the line – and I wanted water so badly. But apparently the hospital won’t let anaphylactic patients have water in case their throats close again. I was mad about that. Took a sip anyway before the nurse grabbed the cup from my hand. I got feisty but was too hoarse to be as feisty as I wanted to be. My allergist lets me drink water when I need it, after all. But fine. Lawsuits, etc.

The nurse from my allergist’s office called to check in, and talked me through what she thought the hospital’s plan would be. I felt much more comfortable, then, when the hospital did prescribe the treatment she suggested.

The hospital stay was mostly uneventful. I worked from my bed – yay for tablets! – and stayed there for about 5 hours. They sent me off with my frenemy prednisone (frenemy bc it works but also because it makes me emotional, hyper, achey, sore, and generally in a daze. Like, I am in a daze right now, I can feel it, I want out, but I can’t get out of it. But  my throat isn’t tight. It’s sore and itchy and tired as all hell but it’s not swollen).

Here’s the crazy part though:

The allergy shots they usually give to hypersensitive patients to start out with contain 1 one hundred millionth of their environmental allergens in a serum. Because of my history, my doctor started me on an unprecedented dose – 1 ten billionth. And this anaphylactic reaction, which occurs 1 in a few million, happened anyway. If I continue to get shots — and that remains to be seen — it’d be at a dose of 1 one hundred billionth.

IS THAT EVEN A NUMBER? Or, as the nurse put it, “Drink the tap water, it’s probably the same.”

I just never learned fractions that crazy. One ten billionth of an allergen is enough to kill me. How have I survived this long? I feel so incredibly lucky. And I totally get my airborne tendencies so much more now.

.0000000001

That’s one ten billionth.

That’s preposterous. That’s not a number.

What’s crazier is that on Monday, I successfully ate peanut butter. 1% of the US population has a peanut allergy, and it’s among the most popular among food allergic people. So you’d think I’d be a part of that statistic. But no. I mean, I’m thrilled because I love peanut butter, but really?

I am anomaly.

When the nurse explained how rare my reaction was, I started hysterically laughing. Because, honestly, what else can you do? I just kept thinking “The best laid plans of mice and men…”

I mean, who wouldn’t take the odds of allergy shots? One in a few million? A dose of basically a nonexistent number? You have to be a fool to avoid that treatment.

But just like I always win at roulette if the people at the table are smiling (fact), I can’t always trust odds. The world is so beyond our control, and there’s something kind of awesome and crazy and scary about that. We can plan and research and cover all our bases and cross our Ts and dot our Is but ultimately, anything can happen.

We just have to know what to do when it does. I keep my new Auvi Q trainer on my dresser and play with it once a week or so (because who doesn’t like things that talk!) saved my life. Maybe that saved my life. My instincts kicked in when they needed to. I was built with this crazy overachieving immune system. But I was also built with the wherewithal and courage to not let it break me.

Now if only I could figure out how to not cry at random things while on prednisone…so far the tally is:

people talking to me when I wanted them not to

a group of 13 year old girls dancing to “Sitting on the Dock of the Bay”

paper towels falling off my counter

I’m terrified to find out what would happen if I saw a kodak commercial or an Oscar montage. And there my lip goes, quivering before the tears…

Food Challenge Round 24: Cindy Vs. Peanut Butter (1 tsp)

Let’s get the easy stuff out of the way — I’m alive!

I was really scared I wouldn’t be. I’m a little bit scared every time I do one of these challenges, because when you think about it, I’m basically testing myself to see what foods might kill me and that means I have a 50% chance of getting a life-threatening reaction once a week, but this week I was particularly scared. Though the strongest reaction I’ve ever had to peanuts was mildly itchy ears during my most hypersensitive state (the same time I decided I needed to seek medical attention), the commonness of the allergy scared me. So did dying like an idiot. Like, if I’d god forbid died with the cottonseed incident*, at least my obituary would be interesting. But eating peanuts on purpose in an experiment? That would just read “Cindy Kaplan is a moron, and well, duh.” Like, how dumb do you have to be to an allergic person and eat frikkin peanuts to see what happens? So most of my day yesterday was spent panicking, crying, praying, and seeking support as I worked through the fear.

Decided not to go with Jif...they don't sell it in Whole Foods and I'm too lazy to shop elsewhere, and come on, rapeseed? Over it.

Decided not to go with Jif…they don’t sell it in Whole Foods and I’m too lazy to shop elsewhere, and come on, rapeseed? Over it.

Turns out, there was nothing to be scared of! I had a teaspoon of peanut butter this morning – the crunchy kind – and it was DELICIOUS. And I’m fine. It just felt like I was a person eating delicious food. Not like a hesitant person, not a twinge of a headache, just, oh, here’s a spoon with peanut butter on it, here’s my mouth, ok cool. I’d forgotten how awesome peanut butter tasted, and how funny it is when it sticks to your mouth. It’s the food that just keeps giving!

After half an hour of chitchat/observation — not the 2 hours I’d planned on — I was sent home. Next week, I’ll try 2 teaspoons of peanut butter, and I’ll keep increasing my peanut butter threshold until either I get sick or I reach my own personal quota. I’m thinking about 6 teaspoons. I never liked much more than that. In case you’re wondering why this challenge is so different, it’s because peanuts are so prevalent so they take every precaution. Personally, I’m more scared of cottonseed oil, but my threshold for that is basically nonexistant.

Anyway, now I can eat things that have traces of peanuts (assuming the other ingredients are fine…I had been so excited about having Crunch, Kit Kat, and M&Ms again but there are other questionable ingredients in those chocolates so that’ll have to wait…but Scharffenberger is not a bad consolation prize), and I can eat 1 tsp of peanut butter (the fancy organic kind I bought) 3 times a week.

So basically, my life changed today. I couldn’t be happier or feel more blessed.

FOOD CHALLENGE TALLY:

Cindy: 16

Allergens: 7

Undecided: 1

Next Up: More Peanut Butter!

*random halachic (jewish law) thought: do I have to say birkat hagomel (the blessing for surviving a life-threatening situation) after anaphylaxis? What about after successful food challenges? How different is the risk of trying peanuts from the risk of airplane travel or prolonged illness or a car accident?