Food Challenge Round 27: Cindy vs. Olive Oil — The Rematch

First of all, yes, the punctuation in the title of my blog post is stolen from Mission: Impossible — Ghost Protocol. No, I didn’t seem Tom Cruise at the allergist.

But I DID successfully eat olive oil.

As you may recall, on July 31, 2012, I posted about my first challenge with olive oil. It was a horrible experience. Not anaphylaxis bad, but not fun. I remember how lethargic I was after eating those rye crackers, how everything hurt when I moved. Not today, though! Today, I ate potatoes with olive oil and was totally fine. I ate like a normal person eating potatoes. It’s so strange how I can so easily recall feeling my whole body start to shut down just a year ago, and today, I ate food and just felt like I’d eaten. Not like a bulldozer had dragged me halfway across Prague. (Not sure why I picked Prague).

It's Chanukah in August!

It’s Chanukah in August!

So yay! I can now eat olive oil! This is a serious life change. It’ll be easier for other people to cook for me, I can probably go to more restaurants, and I there’s one invisible food that’s off my list. And more importantly:

I’M GETTING BETTER.

The hypersensitivity that started two years ago (isn’t it just dandy that the X-Games are a reminder of my first hospital visit?) is on it’s way out. I’ll always have allergies, but some of the ones that went all wackadoodle on me are waning. There is a light at the end of the tunnel. My body is recovering. It’s relenting in its war on food. Just call it Robert E. Lee. Proclaim me emancipated, or something.

I have to be careful about how much olive oil I eat so as not to overdose again — twice a week, in limited amounts (basically one dish per meal, twice a week, preferably not in back to back meals), but it’s still a game changer. It’s on the table…literally.

FOOD CHALLENGE TALLY

Cindy: 19

Allergens: 6 (yayyy this number is going down!)

Up Next: Onion Powder

Why Don’t We Believe in Allergies?

Today, I was incredibly moved by a post on the blog A Tale of Anaphylaxis. The author, epipenprincess aka Sydney, is a student who has quite a few anaphylactic allergies. In her latest post, she talks about how after a recent bout of anaphylaxis, some people were talking behind her back about how she was overreacting and making it all up. I was so moved because it reminded me so much of countless experiences I’ve had where people just flat out didn’t believe me. I know that a decade ago, I was a high school student with severe allergies and I made it through just fine, but I’m still in such admiration of Sydney’s bravery to not only handle the so-called “haters” but to do so the day after a reaction, on a blog, and with a positive attitude. That doesn’t sound to me like the sort of person who makes up allergies to get attention, or overreacts to things willy-nilly. Her immune system might overreact, but that’s about it. And for people to be gossiping about her while she’s sick – it’s disgusting. Somehow, I can handle this ridiculousness when it happens to me (most of the time, I do get riled up sometimes), but hearing about it happening to someone else just infuriates me. There’s this fad to not believe in allergies. Allergy agnosticism, if you will.

I get not believing in trolls, or leprechauns, or unicorns (though I sort of believe in unicorns). But allergies? That’s absurd. It’s not a thing to not believe in. Why do we believe in cancer or heart attacks or ADD but not believe in allergies? Because the idea of allergies is so crazy that we don’t want to? We can’t fathom living in a world where something harmless to us is actually a killer to some people – we decide we don’t like that notion – so we assume the person is crazy? If you can’t experience something first hand you don’t think it’s real? I wonder if the logic goes, “I could have a heart attack someday, so that’s real. But I have no history of an allergy, so anaphylaxis is probs fake.” This attitude – which, honestly, I think is pretty illogical – is also dangerous. What if Sydney were younger and not in tune with her body enough to know she needed help? I’ve been there. Thankfully, I never stopped breathing until a couple months ago, but I definitely had times where I didn’t take care of myself properly because I was convinced I was crazy. And why? Because enough people had told me I was crazy.

I remember one high school experience in particular. I was at a weekend seminar for school, and even though I asked the caterer what was in all the food, I mistakenly ate pasta with mushrooms. Once I found out there were mushrooms in the pasta, I kept eating it, because I had never tried mushrooms and thought there was no time like the present (oh, how my doctor would flip out now if he knew). I started feeling hazy and weird, and told my friends I needed help. At the time, I didn’t carry benadryl with me, because I didn’t react that often. There were no real rules about epipens and all that. So, we get the EMT and tell him what’s going on and that I need benadryl. He didn’t have any (also something that wouldn’t happen these days, I hope), and before he sent someone to get some, he “examined” me. At this point, I was freaking out that I wasn’t going to get medicine fast enough. I started having a panic attack, but when your throat is tight and you feel sick and you’re on the lookout for anaphylaxis, a panic attack isn’t the best idea. The EMT told me he thought I was only having a panic attack, and I assured him that panic attack or not, I was having a reaction, and that it was either getting worse or I was indeed panicking, but either way, I needed benadryl stat. Someone eventually ran out and bought some, I took it, and they sent me back to my room. I felt better after the benadryl, and thank God didn’t need epi. I remember another girl from my school who had a lot of allergies came to my room and calmed me down. She said she had heard what happened, and that no matter what anyone said, I knew if I was having an attack, and that if I needed anything, she had allergy meds with her and would help me if I needed to go to the hospital. She wasn’t a good friend of mine, more of an acquaintance classmate, but it meant the world to me that she helped me. I hated that people had been talking about me behind my back – I’m sure, like Sydney’s peers, they were saying not so nice things – but this girl weeded through that to support me. When my school’s professionals were lax, inattentive, not taking me seriously (and making it worse by doing so, as the longer I waited for the benadryl, the more scared I became, hence the panic attack), my friends and this girl had my back. I don’t know if the EMT didn’t believe me, or if the caterer didn’t believe me when I asked him what was in the food, but I know I wasn’t taken seriously, even though it was serious. It’s not a minor incident when you start to lose your eyesight and train of thought because of a food. It’s not as serious as not breathing, but it’s not a walk in the park either.

It’s not just the EMT who didn’t have his act together. The doctor at my college actually told my primary care doctor that she didn’t think, as a general rule, that allergies were real. I often have meals with people who think I’m making it up. People who say that no one outside of America has food allergies (except that Canada and other countries actually have better allergy laws, so I imagine they have citizens who require said laws). The first allergist I saw in LA didn’t believe in my food allergies even while she was testing me, but to her credit, she did believe in my environmental allergies. I feel ridiculous typing that, but she actually said to me, “sometimes people think they have allergies, but really they just have exhaustion.” Oh, so I was exhausted when I was being breastfed, and just never recouped that sleep in 26 years? Then she suggested I had  an ulcer. I do get ulcers from some medicines, and I can tell you, they feel nothing like your throat swelling, hives, loss of vision, and shortness of breath. She’s an allergist and she didn’t believe in my allergies. I can go on and on about people who have questioned me.

That said, there are more believers than non-believers. The way I’m learning to deal with these people who think I’m crazy is by focusing on the people who know I’m not. My friends who encouraged me to see an allergist and get treatment. The people who go out of their way to cook meals I can eat. The people who wash their hands every time they come to see me in case they just ate something I can’t have. The people who have taken me to the hospital. Who have talked me through taking medicine when I need to. Who look at menus when we go out to eat or when they order in and get something that’s easier for me to be around. My current doctor and his team of nurses who continue to educate me and go out of their way to check in on me when I’ve had an attack. And all of you who read this blog.

Sure, the non-believers put my life in jeopardy. They make it hard. There’s no excuse for them. But ultimately, they don’t matter. I know the truth, and the people who are important know the truth. Allergies aren’t something you can believe in or not believe in. They aren’t something to joke about or make fun of or disregard as unimportant. And while it’s exhausting to both have anaphylactic allergies and be brave, I’m going to take a page out of Sydney’s book and brush off the “haters,” and just keep on trucking, safely.

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?

Food Challenge 23: Cindy vs. Barley

I went into my barley challenge this morning with mixed feelings. On the one hand, I knew I could eat barley in its malted form in Heineken and flour. On the other hand, even though I can have wheat, the processing of wheat in pasta made me vomit while driving a car and subsequently pass out for a few hours. So, you know. You never can tell.

Luckily, though, pasta stays its own unique experience. I ate barley this morning – just plain boiled barley with a touch of salt – and did not get sick at all. And, even better, loved the taste of it. Who knew barley was delicious? I can’t wait to explore interesting barley soup and risotto recipes. Totally open to recommendations, too, but none with mushrooms, please (what is it with those two? Seriously, can someone who eats both please explain why they taste good together? I’m so curious and I’ll never find out).

And, now that I can eat barley, I can have one more of the seven species of Israel. These are foods that were brought as a tithe to the temple and are still traditionally eaten on Rosh Hashana and other holidays. They’re like the holiest foods, I think, and it bothers me that I’m allergic to so many of them.  They are wheat, barley, grapes, figs, pomegranates, olives, and dates. And now, I’m only allergic to figs, pomegranates, olives, and dates. As soon as I get olives back — someday, right??? — I’ll be back to where I started, with the majority on my side. I didn’t realize how happy it would make me to get barley back, but it really, really does.

Can't wait to make this! Well, after I adapt it to exclude the chicken broth (waste of time/chicken), onion, white wine, and replace the olive oil. So basically, I want to make barley with thyme, pepper, parmesan cheese, carrots, and maybe I'll be creative and throw in a pepper for creativity. Or nix the cheese and use red wine and garlic. It's a pretty picture, screw the actual recipe!

Can’t wait to make this! Well, after I adapt it to exclude the chicken broth (waste of time/chicken), onion, white wine, and replace the olive oil. So basically, I want to make barley with thyme, pepper, parmesan cheese, carrots, and maybe I’ll be creative and throw in a pepper for added flavor. Or nix the cheese and use red wine and garlic. It’s a pretty picture, screw the actual recipe! (or don’t: http://www.seriouseats.com/recipes/2008/12/healthy-delicious-barley-risotto-recipe.html)

In other good news, I’m going to FINALLY be trying peanuts next time. Originally, my doctor had recommended we do a full day double blind challenge for peanuts. That was simply never going to happen, since I can’t take a whole day off of work just for the ability to eat peanuts three times a week, maybe. Loss of a day’s pay plus high risk of anaphylaxis? No thank you. Refilling my epipen prescription is more than my salary, so not worth it. But, I’ve been craving peanuts lately. I’ve been trying to smell it, I’ve been totally jealous of the office dog when she licks her jar of Skippy. I mean, all I want to do is just eat peanut butter from the jar and maybe sneak a few honey roasted peanuts and Butterfingers and Reese’s cups. Yum. So I asked the doctor again if peanuts were something we could do. Now that I’ve been getting better and since he’s seen how quickly my anaphylaxis actually comes on, he said we can knock the peanuts out in a regular challenge in 2 hours instead of the usual 20 or so minutes. It’s not going to be a double blind, because unlike most patients, I believe I am not allergic to peanuts. I’d probably convince myself I was fine with the peanuts in the double blind, I want them that badly.

So next time I food challenge — date TBD, depending on how my scratch test goes on Monday — I’ll be eating peanuts. And I better succeed, because I want them so so so badly. Plus, how baller would it be to be allergic to as many things as I am allergic to, and NOT be allergic to peanuts, the most popular allergen? I’d only be allergic to 3 of the top 8 (thought shellfish is iffy since I have no way of challenging it and keeping kosher). Fish and nuts. But I don’t want to get my hopes up either. Peanut anaphylaxis seems like the sort of thing you don’t want to induce upon yourself. It just seems socially awkward.

The only thing is, I want to eat Skippy crunchy peanut butter because it’s the best. But, it turns out, they use cottonseed oil (and something called “rapeseed oil” which is an antiquated name for canola oil, but I guess Skippy didn’t get the memo that people don’t like to eat things that are called rape). So no Skippy for me. Because cottonseed oil can kill me. Not because I don’t support poor verbage (which I don’t). All peanut butters use rapeseed, so that’s a non-starter. But I will, like a choosy mom, choose Jif. Because it’s the only name-brand peanut butter that doesn’t use cottonseed oil. Though, interesting fact, now that I’ve spent my night researching peanut butter — they make peanut butter with fish in it to increase omega 3s, and the reduced fat peanut butter is only 60% peanuts and 40% chemicals that sound like they can kill you. Who knew peanut butter was so darn complicated?

FOOD CHALLENGE TALLY

Cindy: 15

Allergens: 7

Undecided: 1

Next Up: PEANUT BUTTER!

A Thought on Semantics — Allergy Attack vs. Allergic Reaction

It occurred to me in one of my anaphylaxis-fueled dreams on Wednesday that no one calls what happens when an allergen collides with your body an “allergy attack” anymore. It’s an “allergic reaction.” And yet, I remember it being an “attack” throughout most of my childhood.

And then I started thinking that I now say I have “life-threatening allergies” instead of “potentially fatal allergies,” though I said the latter all the time as a kid (10 points for my vocabulary, huh? I thought I was so cool for having used the word fatal before Sega Genesis’ Mortal Kombat’s “fatalities” were a thing. At least they were a thing in my own head. But I digress).

I sort of feel like people took my allergies way more seriously when I was a kid, and I don’t know if that’s because dying children are scary or if it’s because the words were scarier. From reading a bunch of mom blogs, I get the sense that there are a lot of people out there who don’t really respect kid’s allergies so much. And maybe my parents sheltered me from that negativity, or the internet didn’t really give room for so much bullying or so many opinions — but this isn’t an academic thesis so I’m going to hypothesize that the way we talk about allergies influences the way we respond to them.

Think about it: an allergy attack sounds scary. It sounds like war. Like some outside influence is attacking your body and trying to kill you. That’s pretty damn accurate. An attack sounds painful, taxing, and long-lasting. Because there’s rebuilding that needs to happen after an attack. You don’t just get hit by some bullets and walk away unscathed. You need a few days to wrap your head around what happened and get your strength back and all that. That’s what happens with anaphylaxis. Or any severe allergic episode (shoutout the blog, how clever, right?) for that matter. For instance, while I was better this time after the epi and all that, I still slept more than normal, still had trouble walking distances I would have normally been totally cool with, and found myself completely and utterly exhausted from lifting four 35lb sandbags and other production equipment that’s usually no problem at all. I would say I’m 80% back to full Cindy strength. I look okay, I sound okay, but I need to sit down more than I normally would. I need to take breaks when talking. I was attacked. I’m recovering.

Meanwhile, an allergic reaction sounds like a pansy thing. A reaction is a totally blase occurrence  Like, “When you found out you were nominated for an Oscar, how did you react?” You were happy. And you moved on with your day. “When you saw that YouTube video, how did you react?” You laughed and shared it. And you moved on with your day. A reaction is an immediate feeling that presents itself and then dissipates until the next influencer comes along provoking another reaction. An allergic reaction isn’t something to get worked up about. You ate cottonseed oil, you reacted by not breathing, then you breathed again, move on. I wish.

A reaction is simpler and less full-body than an attack. And I believe some allergic responses are reactions — like when I get hives from touching my laptop that someone borrowed while eating a sandwich and nothing else happen. But some — and I’d argue most if not all severe ones — are attacks. They are full-body hostile takeovers. And maybe if we said so, the idea of little kids not eating peanut butter cupcakes in schools would be easier to stomach. The idea that “if my child gets near peanut butter, she’ll react” sounds like no big deal, and can be countered with “well, if my child doesn’t get her favorite cupcake for her birthday, she’ll react too!” But if you say “if my child gets near peanut butter, she will have an allergy attack,” that packs more of a punch.

Same with “fatal” and “life-threatening.” Life threatening sounds sort of positive. Bear with me here. It includes the word “life.” Life is generally a good thing. Life-threatening implies that you have your life and something may threaten it but it’s still predominant. “Potentially fatal” sounds like “Probably going to die.” In actuality, they mean the same thing. But one sounds scarier. Which means it’s more likely to be taken seriously. When I go to restaurants and say things like “I might die” or “I have potentially fatal food allergies”  the waiter takes me more seriously than if I say “I have severe life-threatening allergies.” It means the same thing, but it elicits different responses.

Just saying.

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

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

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

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

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

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

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

“Help” was all I could say.

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

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

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

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

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

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

Actually, I learned a few things:

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

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

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

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

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

FOOD CHALLENGE TALLY

Cindy: 14

Allergens: 7

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

Food Challenge Round 4: Cindy vs Pasta

Apparently, I have an “every other food” thing going on, because I failed pasta.

PASTA.

Pasta, as in the food I’ve eaten my entire life. I cannot remember a time I didn’t eat pasta (except these last few months). When all the other kids brought sandwiches to school, I brought pasta. I used to do this disgusting thing as a three year old where I’d pour my pasta in my thermos cap filled with milk. Every day. Because I ate pasta every day.

But apparently, I ate too much of it in this last year. Totally overdosed. Probably because as a kid my body was adapted to a one-food regimen, but at 25, when I could eat a ton more, too much pasta was a bad thing. When this whole thing started, I was eating pasta so regularly – I had it for lunch a few times a week (the other days, I ate bagels), and on days I didn’t have pasta for lunch, I had it for dinner. I was just so stressed and so tired and so not interested in cooking or putting in effort into anything that I guess I OD’ed on pasta. [this is maybe why people shouldn’t work for companies run by “shrill narcissists.”]

Anyway…

I self-challenged pasta yesterday. I had an errand to run in Beverly Hills at lunchtime, and since I promised my doctor I’d try the pasta during office hours not too far away, it seemed perfect to try it yesterday.

Caption 1: Since my last name is derived from Capellini, you’d think I’d be able to eat it…guess Juliet was right when she asked what was in a name.
Caption 2: Eff you, semolina and durum. We will meet again.

I had about four, maybe five, forkfuls. And then all of a sudden I got EXHAUSTED. Like all the wind was knocked out of me. I couldn’t think straight. Nothing swelled, I was breathing, but I just couldn’t move. I couldn’t open my mouth for the next forkful. I got extremely nauseated and just stopped. Took some Benadryl, drank a bunch of water, and drove back to work — at which point I sort of half vomited/half coughed while driving. You know what’s awesome? Vomiting into an old raisins bag in the trash pile of your car while stopped at a red light on Melrose. At least I hadn’t taken the trash out yet…

I left work early and slept the entire rest of the afternoon/evening. And today, after each meal (except breakfast which I had at the same time as Benadryl), I experienced crazy stomach pains, the usual throat swelling, and loss of voice.

The good news? This was the first stomach-oriented allergic reaction I’ve had! I’ve had almost every single kind of anaphylaxis now! Let’s keep it at this level, k? Because the only one left is blocked airwaves and that is sooooo not my thing.

I can’t believe I failed pasta. I also can’t believe I’m not as distressed about it as I expected. I can have corn quinoa pasta, brown rice quinoa pasta, rice noodles, homemade pasta…anyone have a good homemade pasta recipe? I think my lack of distress is related to denial, because as soon as I finish tournament one of food challenges, I want to test pasta again. I mean, 24 years of health has to count for something, right? Maybe it was cross-contamination of flax…or something.

It’s either denial, or I’ve gotten incredibly strong.

I’m guessing some kind of combination.

Bottom line — this probably means I can have onions when I try them on Tuesday! Because allergy testing totally works in patterns, right?

Food Challenge Tally

Cindy – 2

Allergens – 2

Up next: Onions.

Thanks a lot, Xanthan Gum.

Last night, I was exactly one week into my new 48-food free diet.  And it’s been interesting, lots of corn, lots of quinoa, lots of chicken.  And only a couple of allergic reactions, and they were pretty minor.  (Now on the list to self-test: goat cheese, basil, and thyme).

They were pretty minor, that is, until last night. When I decided to try a gluten free corn bread mix.  And one that made me really excited, because it’s free of every popular allergen and dedicated to raising funds for allergy research, and that sounded like the perfect mix of sensitivity and cross-contamination-free product and love that I really needed.  The mix, in case you’re interested, is by Micah’s Favourite, a gluten free baking mixes company.  And for all I know, it’s the most delicious stuff ever, so I’m not slamming Micah’s.  But did it the mix send me into a tizzy?  In a word – yes.

I had made myself a light dinner – baked sweet potato with salt, pepper, paprika, and grapeseed oil; polenta  lightly fried in grapeseed oil and flavored with salt and pepper – and was baking the corn bread for a little additional starch.  Because until last week, I ate pasta at least three times a week for dinner and/or lunch, plus a bagel a couple of morning a week, and a week without wheat was like the worst Passover experience possible.  A girl needs her starches.

So I’m fine with my sweet potato.  Fine with my polenta.  Corn bread finishes, I cut a square, and take off that gorgeous little extra cripsy piece on the corner that got just a little browner than the rest of the bread, and put it in my mouth as I settle in to catch up on some Grey’s Anatomy.

BOOM.

It’s like the craziest migraine ever.  I think my sinuses are going to explode.  I reread the corn bread box.  Same ingredients as the polenta, save for some sugar I’d added, some oil I’d added (oh but I’d just eaten that same oil), water, and xanthan gum.  But I don’t know what xanthan gum is.  So I do what I always do.  I believe it’s psychosomatic and that I’ve gone crazy.

Note: I may be crazy, but not when it comes to food allergies.  The doctor took the picture to prove it.  Because I didn’t believe him.  Because so many people have failed to believe me throughout my life.  Thanks, guys.  Super appreciate it.

I decide to take a shower to calm myself down, plus the steam tends to help with breathing.  And the super hot water cleans the allergens out, sometimes.  It’s my go-to when I’m not in the mood to take benedryl yet again, and for minor reactions, it’s worked.  On the way to my bathroom, I feel this thump in my chest.  Like someone has hit  me with a baseball bat.  This has happened once before, in August, the one time I went to the hospital for this whole thing, and the moment I realized I’d developed some new allergy.  I ignore it.  And run to the bathroom to shower, and suddenty my stomach is displeased.  And here I notice I’ve gotten bloated from LA to NY, and have developed a hive on my stomach and two blotchy rashes on my neck/chest/clavicle area.

You’re probably hoping I decided it wasn’t psychosomatic and took benedryl or used my epipen.

Yeah, we don’t know each other very well yet.

I shower.  Try hard as I can to remember the lyrics to Nicki Minaj songs, because in my spare time, I’m learning to rap like her.  I know the words to Nicki Minaj songs in general.  But not then.  I couldn’t even get the tune.  I had no clue what was going on, but I knew I liked the water.

Finally decided to get out of the shower because I had to sit down.  Standing wasn’t ok.  I thought I might need help, and since I live alone, I called a friend.  He didn’t pick up.  I called again, which is my family’s code for “someone is dying, pick up the phone.”  He didn’t pick up. Called another friend.  No dice.  Sat on my floor some more.  Mustered the strength for benedryl.

My first friend, M, called back almost immediately.  And so I told him what’s going on.  But here’s the thing.  I believe in subtext and I don’t know how to ask for help.  So instead of saying, “Hey.  I need you to come over and help me go to the hospital because I think I need extra help and I’m scared,” I said, “I’m feeling weird, I’m in pajamas, I’m tired, I ate something bad, maybe I have a super saturation quota of corn and ate so much of it this past week my body is all like ‘eff you corn’ and now it’s hard to breathe and I don’t want to use my epipen because I’m in pajamas and I’m so tired and I took benedryl and plus if I was going to die, I’d have died but what if I die but I guess I won’t so I’m not going to the hospital because of the pajamas.”  If you’re reading this to support a friend or loved one with allergies: we don’t always know how to communicate what we need.  It’s hard to admit, especially if enough people have told you you’re crazy.  Especially if there’s not enough oxygen going to your brain.  Having a severe allergic reaction is like being stoned, and stoned people can’t communicate well or make good decisions.  So don’t let them make decisions.  Not that M was at fault.  At all.  In fact, staying on the phone with him curbed the panic attack that was starting and I felt loved and that’s important.  But I learned I need to communicate better.  Saying, “I can’t talk and breathe at the same time” isn’t convincing to someone on the phone.  Saying, “Talking to you is extremely painful and I need medical attention, can you come over and help me seek it” is helpful.  But hey, hindsight and enough oxygen is 20/20.

So on the phone with M, I took some hits from my inhaler, which is a silly thing to have because I have great non-asthmatic breathing, but it was once prescribed to me and the hospital people gave me some inhaler stuff and it was nice so I figured I’d do it, too.  I drank water.  I started laughing uncontrollably and no, nothing was funny but I had so little oxygen I couldn’t think straight.  Took tylenol for the migraine.  Was jonesing for a heating pad, but mine is filled with rice and I’m not supposed to touch rice.  Rubbed on a ton of vaporub.  That’s a trick I taught myself.  When my breathing is compromised but not fully stopped, when I feel so congested I can’t get the air out (this is for congestion blocking your breathing, NOT airwaves closing from allergies, and I’m the farthest thing from an MD so take what I say with a grain of salt) I slather on vaporub on my neck, chest, and back, and it soothes the pain and tightness and gives me some relief.

I was terrified to go to sleep.  I spent about an hour feeling like I couldn’t breathe and like someone was sitting on my throat, just chilling, paying no heed to the fact that their chilling was impeding my breathing.  The other friend, E, had called back, and we video chatted.  I told her what was going on and she said, “Xanthan gum? My aunt thinks that stuff is basically poison.”

Her aunt runs this amazing bakery called Breakaway Bakery that specializes in gluten free and popular allergen free foods.  Notice I say popular allergen free.  Because NOTHING IS ALLERGEN FREE. There are no foods that absolutely no one is allergic to.  So let’s not be misleading, or make people feel bad, or tell the public there are 7 allergens and everything else is fake.  Because you know what happens when we do?  People like me get pretty sick but are too scared that they’re crazy to seek medical attention.  But the point is, Breakaway Bakery is awesome, my friend’s aunt is really caring and knowledgeable, and their baked goods are delicious.  If you can eat them.

So I googled xanthan gum.  And sure enough, a number of people have written about xanthan gum allergies.  And Wikipedia explains that it’s made from the same bacteria that causes black rotting on broccoli, cauliflower, and leafy greens.  If there’s every been anything I’m sure of it’s that Wikipedia is never wrong (once I believed an article that said quinoa is a spinach seed, even though I knew that was preposterous…and no, I don’t really believe Wikipedia is never wrong.).  The thing I’m sure of is that I’m pretty damn allergic to broccoli, cauliflower, and especially leafy greens.  And that maybe I was allergic to xanthan gum, too.  This article brought me a ton of comfort – other people had a similar reaction!

E debunked my super saturation of corn theory.  Which I appreciate, because without corn, potatoes, rice, and wheat, I’m a little bit screwed.  A girl cannot live on oats and rye alone. (And I mean alone.  Without yeast or any other agents of utility).

At 2am, I finally felt like I could go to sleep without fear of dying. My breath was controlled, my swelling minor, my migraine  only a seven on a scale of one to ten.  Hives were gone, and bloating is just a fact of life sometimes.  And I did wake up this morning.  Feeling like crap, but alive.

Halfway through the day, it came back.  I ate for the first time (Kix) and it was throat tightness, lightheadedness, bloating, itching.  So I called my mom, emailed my sister, and finally relented and called my doctor who said that this was all normal.

ALL NORMAL.  Let’s let that sink in.  The power of someone saying, “This happens.  You are not alone.  I have heard this before and can help you” is immense.  That’s why I’m letting this post get so long, by the way.  In case you’re googling xanthan gum and allergy and wondering if you are normal.  You are.  Seek medical attention because you deserve it and it’s ok.

My doctor told me to use my epipen.  I told him I was scared.  I was standing in the hallway of my gorgeous office space outside of a major production company’s office – in a hallway where days before, Bradley Cooper was roaming – I was standing whining and crying and clutching my throat saying I was too scared to use my epipen and “didn’t wanna.”  He told me to come to his office and he’d give me epi and steroids.  And it would be ok.  I asked what would happen if I ignored it.  He said I’d stay sick.  And that’s maybe a little bit silly but I’m entitled to make my own decision.  I told him I wanted to think about it (I am a genius sometimes), called my mom, who said I needed to go.

I want to take this opportunity to thank my boss who has let me leave work for allergic reactions more times than I bet he ever bargained for.

By the time I beat LA rush hour traffic (Thanks for teaching me how to drive, Brooklyn.  I totally New York Cityed Beverly Hills traffic today and I’m not apologizing. Oh, and Bruno Mars was driving next to me which is super baller), my throat tightness was subsiding.  The nurse injected steroids into my “just above the butt area” and it hurt but she talked me through it and we did breathing stuff. The doctor and I chatted, he examined my airways and determined I was totally swollen in my glands and sinuses and had an overproduction of mucus, but my airways were clear.

“So I’m good?!”

“No. You’re just breathing, but you’re all swollen.  You’re hypersensitive, and you will be for a few days.  But we learned something.  No xanthan gum.  At all.”

“Guar gum?”

“Same thing.  No.”

“Isn’t it hilarious that xanthan gum is that bacteria on the foods I can’t eat? I googled things, and it made sense.”

“It does make sense, and while xanthan gum isn’t a popular allergen so we don’t test for it, it is an allergen for some people, and you are fine with corn, and you learned something.”

And he told me to take benedryl every night for a few days in addition to my routine morning Zyrtec, and to call him if this happens again.  I asked if I needed my epipen last night.  He said probably just steroids, and that’s why I call.

So I skipped back to work (or fought traffic, whatever), and when the steroids kicked in…

MAN ALIVE!

It was like energy I never had before.  I totally get baseball players now.  I was energized after a day of eating a handful of kicks and a little bit of soda and having an allergic reaction.  Still haven’t stopped moving.  This is way better than the last steroid which made me an emotional mess that just yelled and cried and yelled and cried for two days.  No, I’m not advocating steroids.  They’re probably not good for you.  But I feel unswollen and so energized and I learned two really important lessons:

1. There’s nothing to fear from going to a doctor.

2. I’m allergic to xanthan gum.