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…

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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).