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?

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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.

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?

Cindy vs. The World: A Testimony of an Environment Allergy Scratch Test Panel

NURSE

“Cindy, you can’t anything, and you can’t go anywhere. What do we do?”

Flash back to twenty minutes earlier…

I had my scratch today. I was so beyond excited, if for no other reason than it meant I could go back on antihistamines. I was fine on Shabbat, but as soon as Sunday aka Day 2 rolled around I was done with the world. I felt like a junkie, counting down the hours until I could go back on Zyrtec.

After a pretty horrific drive in the LA rain to the doctor’s office (thank God his office is a mile away, in practically a straight line. Because some of us had questionable eyesight and reaction time this morning and all of us in this city drive like morons in the rain), it was time for the test. We tested 72 different environmental allergens. For those of you who haven’t had the pleasure of having a scratch test, what happens is the nurse pricks your arm with a histamine to make sure your skin reacts in general. Then, she pricks your back with a series of little white plastic things that just tap an allergen to your skin. Each plastic bracket is marked to indicate a different allergen. After 25 minutes (or less but usually not), the nurse and doctor return to evaluate how big the bumps get. You may have no bumps. You may have 72. The severity of the allergy is indicated by a number 1-4 and a letter A-D, referring to the scope of the redness and the height of the bump (ie swelling). Imagine the worst mosquito bite possible. It’s like 50 times more burny and itchy than that.

Anyway.

The nurse said she’d come back after 5 minutes, instead of 25, since my history is you know, severe and I react quickly. She came in after 2, but we still had a ways to go (I mean, I was in pain, but we weren’t finished yet). Then she came in at 5 and called the doctor in. He waited a couple more minutes and at minute 8 came in and sighed. I asked him to take a picture. He said I wouldn’t want to see it. Then he got out the sheet and started noting things. Forty seven things, to be exact, many with a 3C, some 2Bs, 3Bs, a 4B and two 4cs.  I was allergic to 46/75 foods, so I guess this is just my ballpark lucky number range. If only roulette went up to the forties…

I don’t know what half the things I’m allergic to are. The names are all scientific. But it’s every tree and grass and dust, some weeds, some mold but not most, cats (like astronomically) dogs (which is preposterous since I’m around dogs all the time and I’m fine), goats (but I loved Elvis my zoo goat!), rabbits (guess I won’t get a pet), not horses (thank God!!!), and not cottonseed (which is a lie, since that was all anaphylaxis-y when I ate it). These scratch tests aren’t 100% accurate. But they are accurate enough that shots will help.

Anyway, I got some cream, some antihistamines, and spent the rest of the day like a worn out zombie who needed to soak in a tub of oatmeal. I can’t tell you how many times I wanted to just scream. My clothes hurt. I had to wear a skimpy dress that’s basically too big on top and backless with a comfy loose sweater over it so that nothing would hit my hives. I’m glad I work in an environment where that’s okay, because if I had to dress up for work I’d have stayed home. One zyrtec, one claritin, a bunch of steroid cream and vaporub later, and it’s time for my Zyrtec. As I write this I am trying not to scream. I screamed earlier, when I was doing the math for the Scoggins Report (which, ps, ya’ll should subscribe to, because it’s awesome and also SpecScout is awesome), and realized that I’m sick of movies being action thrillers. Somehow, I think I’m more mad at the hives and expressing it poorly. Either way. Yelling is cathartic.

The bright side, though — because bright sides are the only sides I like to see — I now know why I can’t eat on certain days, I know why I don’t feel well often, and I’m finally going to get shots to fix it. I can’t believe what my body fights through every day, and I feel so beyond blessed that I am as healthy as I am. I hope in 3-5 years when the shots do their thing, I’ll be able to stand a lot more foods just by virtue of the fact that my body won’t be fighting the outside and the food at the same time. Just one demon at a time.

Now, if you’ll excuse me, I have to go lather more cream on. Maybe rinse off the hives, too. Rap til I feel better. Or, sing Christina Aguilera’s “Keeps Getting Better” because that song helps everything.

Food Challenge 22: Cindy vs. Green Peppers

This was perhaps the silliest food challenge yet. I expected it to be uneventful because I wanted to start slow on this new post-anaphylaxis round of challenges. (In case you’re wondering why it’s been so long, I had to take a break after the cottonseed oil anaphylaxis and subsequent overreactions, and then Passover got in the way, and then work was too busy for me to take risks).

Anyway. I decided to try green peppers because they are around a lot, in spices and in general. And I used to love them more than any other pepper. And I can eat all the other colors. So I thought, “shoe in!”

Nope.

I mean, maybe nope.

The first time I ever had a green pepper, I said it tasted like spoons. Specifically, the dairy spoons from my parents’ house. This grilled green pepper, of which I had one bite, tasted like old metal pipes in dishwashing liquid.

Green peppers or dishwashing liquid? You decide because my taste buds simply don't know.

Green peppers or dishwashing liquid? You decide because my taste buds simply don’t know.

As I chewed the bite, I started making a horrible face. The doctor took one look at me, said “Oh, the pleasant face,” and handed me a trash can to spit it out before I got sick. The last time I made a face even half as horrible was avocado and we all know how that turned out. (If you don’t, read about it here).

So no green peppers for me. Not a confirmed allergen, but a confirmed disgusting food. For now, at least.

The good news, though, is that when I first started going to this allergist, he told me we’d talk about allergy shots when he thought I was in a better place. We talked about allergy shots, so I must be in a better place! I’m getting scratch-tested on Monday for environmental allergies (anyone have a good playlist to distract me from the horrible pain of that test? Or something fun to read? I read Mindy Kaling’s pilot last time, so I’ll take another pilot recommendation). Depending on how that goes, I’ll start getting shots.

So essentially, I’ll be at the office once a week for shots and once a week for challenges. 2 out of the 4 days its open.

Does that mean I qualify as a Beverly Hills resident?

FOOD CHALLENGE TALLY

Cindy: 14

Allergens: 7

Undecided: 1

Next Up: I’m taking suggestions.

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.

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

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

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

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

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

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

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

“Help” was all I could say.

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

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

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

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

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

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

Actually, I learned a few things:

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

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

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

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

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

FOOD CHALLENGE TALLY

Cindy: 14

Allergens: 7

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