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…

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.

Food Challenge 15: Cindy vs. Avocado

Spoiler alert/disclaimer

I am writing this post while on 100mg of Benadryl (normal dose is 50) and a shot of epi. So forgive me if it’s not entirely coherent.

I tried an avocado today. I thought it would go well because it didn’t show up as an allergy on my blood test, but I’d had reactions in the past (I haven’t eaten an avocado in about 7 years, maybe more) so we decided to challenge it anyway. But I figured I’d be eating guacamole all week! (Well, three times, anyway).

Avocados don’t taste as good as I remember, first of all. I was grimacing the entire time I was eating it, and finally started to feel sick about 3/4 of the way through. The doctor stopped me and told me to take Benadryl, as he could see I was not responding well.

“But the blood tests were negative!” I told him.

He told me it’s a different kind of reaction – an oral allergy, not a food allergy – wherein I’m not allergic to avocado the food, but the pollen of the birch tree that’s found in avocado. It’s just as real, just as painful, but not technically a “food” allergy and also cannot result in anaphylaxis. But it can result in crazy swelling, which it did. Throat, tongue, eyes, ears, lips. I didn’t puff up bc I took the Benadryl fast enough but my eyes were so crazy it was impossible to keep them open. They gave me a  half dose of epi with the 5o mg of Benadryl to see how that was.

My first epi ever, by the way. 26 years of dozens of food allergies and I just lost my epinephrine virginity today. Not bad. It’s not as scary as I thought, though the nurse administered a shot to my shoulder, not a pen through my jeans. The epi made me shake so the nurse had to hold my legs down, but it was ok. Shaking meant it was working.

Well, sort of. I was getting worse and more swollen and my mouth was burning and I felt like I had bronchitis, my throat was so inflamed. They gave me more Benadryl – a shot in my hip, this time – and when that didn’t do the full trick, the rest of the dose of epi. I fell asleep for a little while (2o minutes) and woke up feeling less swollen and, while still shitty, out of the woods. I was at the doctor for a total of 3 hours. I wasn’t allowed to drive, but luckily I got a ride (thanks, M!) and I’ve been ordered to stay in bed all day and check in first thing tomorrow morning with the doctor.

So how does it feel to have an allergic reaction? It feels cloudy and overwhelming and exhausting and like there is a beast inside of you that is eating you from the inside and it can’t come out. But the epi shoots the beast in the head and all is well except you’re dizzy, disoriented, and still exhausted. I can barely walk without holding on to something, and I’m out of it in a way I haven’t been in a while, but hey. I survived the food, learned more about allergies, and learned that epipens are, as advertised, a good thing. Oh, and having an allergist take care of you instead of an ER doctor is a dream come true. Well, sort of. I mean, it’s better to not need any care, but that’s not a reality I’m aware of.

So the unofficial fruit of California and I are not going to be friends unless I get environmental allergy shots for the birch tree and try this again. But at least avocados are green and easily found, right?

FOOD CHALLENGE TALLY

Cindy: 10

Allergens: 5

Up Next: TBD, since the doctor’s office is closed for the holidays!

Allergy Questions: Answered (Part 1)

A lot of people ask me their allergy questions because I guess I’ve become a bit of an expert on the issue. Before I get into this new post, I want to reiterate that I am not a doctor, nor have I studied biology since freshman year of high school (and no, it was not my best subject). So all of my answers to allergy questions are based solely on personal experience and things doctors have told me.

For any real questions, seek actual medical advice. I’m just here for when you do a pre-doctor’s appointment google search.

QUESTION: Can’t you just get allergy shots and then eat like a normal person?

ANSWER: Nope. Allergy shots are primarily used for environmental allergies, like insect stings, pollen, dust, dander, and mold. They haven’t been proven effective for foods. Plus, they don’t “cure” an allergy, they just lessen its severity. A lot of people get irritated that their allergy shots aren’t covered by insurance — it’s not your insurance’s fault. It’s that it’s not the proper method of care. It’s kind of like being mad at insurance for not covering physical therapy when you have chronic migraines. Totally unrelated. Blame medical research for not being advanced enough in terms of food allergies. Because maybe they can develop something in the future. But right now, avoidance is the only route to ensure safety. Feel free to read more on webmd.

If you have an allergy question you’d like answered, post it in the comments section and I’ll answer it in a future post.