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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4 responses

  1. Hi Cindy, I’m so sorry about your reaction…! But good for you for dealing with it as you did. I’m curious, I know this was your first time you ever having to give yourself epinephrine…so you can’t necessarily compare the auvi-q with the EpiPen…. But just wondering how painful the auvi-q shot was?? Shockingly painful??…. like, you would hate to have to use it again? Painful, but bearable? Not so painful…?

    My 11yo son has developed a strong fear of having to use the EpiPen… simply because the jab to the thigh & needle hurt like heck. I was thrilled to learn about auvi-q, bcuz I know he’ll be more likely to carry one. But the *fear of pain* factor is still a question mark.

    He asked me to find out for him, so… here I am, asking you this question!

    Thank you for any description you might provide regarding the actual sensations involved in receiving the auvi-q shot! And best wishes to you.

    Krista (mother of food-allergic twins)

    • The Auvi-Q wasn’t that painful upon impact. I barely felt it. I mean, I was terrified because of how hard I was struggling to breathe, so I didn’t really have a second to process anything else, but it definitely was less painful than any injection I’ve gotten at a doctor’s office (and I’m not much for needles and all that). After the injection, once the reaction was starting to subside, I felt a little bit of pain. Just like a black and blue mark, if I touched the site of the injection it felt sore. But prednisone makes my legs feel incredibly sore, too, so I bet that exacerbated it.

      I was terrified of my epi-pen for a really long time. To the point where I refused to use it, even though in hindsight I can think of instances where it would have really helped (in college, I had a reaction that needed an epipen, I didn’t use it, and I wound up sleeping from 10am-6:30pm even after a full night’s sleep, eating dinner, and heading back to bed. My body could not function awake). I was terrified more for the epinephrine itself and less for the shot, but the shot definitely contributed to my fear. Now that I’ve used the Auvi-Q I’m far less scared. I think what helped was training with it on a regular basis (and also having epi at the doctor’s office and knowing it works). The trainer feels almost exactly like the real thing, especially if I do it directly on my thigh, whereas the needle went through pants. It’s more the jab that hurts than the needle. I practiced more with the Auvi-Q than the epipen, because it’s fun to have a robot that talks to you. I know that sounds ridiculous, but I find the voice of the Auvi-Q pretty amusing, and you can only hear it if you use the trainer, so I started to use the trainer. The first time I used the trainer I was scared of the jab. The second time, scared. The third time, it was nothing. I think that definitely helped when using it for real. My epipen trainer is more painful to use than the Auvi-Q one, too.

      I wouldn’t hesitate to use the Auvi-Q again. I hope I never have to. But as scary as these devices are, knowing they work is so much more calming. And I find the Auvi-Q talking instructions to be really helpful, too. It’s like when a nurse talks to you when she’s giving you a shot – you feel it less than when she gives it silently, because you’re distracted.

      Maybe your son can try a trainer Auvi-Q (your allergist’s office may have one) and see how it feels for him compared to an epipen trainer? I definitely prefer the tool, though.

      I hope this helps!

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