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 Round 5: Cindy vs. Onion

It’s hard to believe that I’m already up to my fifth food challenge. Considering I have what feels like a billion more to go, it’s actually kind of seeming like time flies. Wheat still feels new, I’ve still only had the one beer, and I already figured out how to compensate for the lack of pasta. And with my 7:30am doctor’s appointments, I haven’t even been late to work these last few times. You know how some people miraculously find time in their week to go to the gym, and they keep that routine for the foreseeable future? That’s how my food challenges are. Once a week, I wake up early to dedicate an hour or so to my health. Only, instead of working out, I eat while my doctor watches me.

That’s the same, right?

Anyway, on to the topic at hand. Onions. Or, should I say, a sweet yellow onion cooked in a soup or stew or the like (ie: boiled). Because that’s what I challenged today. The results are only applicable to sweet yellow onions cooked in soups or stews (yes, that includes cholent) or the like (ie: boiled).

The good news is, the results are positive! I can now eat sweet yellow onions cooked in soups or stews or the like (ie: boiled).

Just barely, though.

As my mother said when I made my weekly, “post challenge debriefing call,” — “You can’t barely pass a food challenge. It’s not like a math test where you get a 65, not a 64, so the teacher lets you pass. You’re either sick or you’re not.”

Well, I guess foods are more like math than I thought (maybe that’s why I’m so bad with them!). See, I was fine. I was “perfect” as the doctor joked. Except, while eating my chicken soup, I got a crazy sinus headache and felt all funny but not bad funny, just not normal funny. I wasn’t sick enough to give up onions for good, but I also wasn’t interested in finishing the whole bowl of soup (though, I did finish the half of the onion. Like a certain person I know at the Brandeis Chabad. Though, J, you can have the onion, every time. Not interested).

The doctor said it was not enough of a reaction for a Benadryl, but an Allegra, Zyrtec, or Claritin might do me well, if I had one on hand. I didn’t. He said next time, bring one (Claritin, because I already take Allegra and Zyrtec daily). This time, just move on with my life.

It’s also totally possible my reaction was due to the pasta reaction followed by an airborne horseradish reaction, followed by a feverish virus, accompanied by jetlag. My body might just be rebelling. In any case, I did learn that I have to be a little careful, as in avoiding leafy greens and other occasional airborne allergens when I eat sweet yellow onions cooked in soups or stews or the like (ie: boiled).

So it was an iffy, pass which is why I think I only passed onions in this very specific form, but hey. It’s something. Onions in soups are kind of a big deal. And I hate sauteed onions anyway. And onion powder – not something I miss in my own cooking but at all. Sure, it would be nice to eat it in other forms, but whatever. Next time. Like lifting the heavier weights at the gym…sometimes you just tackle that hurdle the next time.

Food Challenge Tally

Cindy – 3

Allergens – 2

Up Next: Tahina

Anyone who has awesome, simple homemade tahina recipes, please let me know!