Gratitude

It’s been a while since I last posted — not because I haven’t had much happen (many more foods, many more Xolair successes) but because I’ve been trying to figure out how to recap the massive life change that Xolair has been to my life. We’ll get to that soon, but for now, a snippet.

I’ve had a rough few weeks. A termite infestation in my apartment has led me to be far more allergic than I have been since starting Xolair. For those of you who may be wondering, “Hey am I allergic to termites?” the answer is: could be. Termite feces collect dust at a high rate, apparently, which can exacerbate dust allergies. So it’s been fun vacuuming (but not too much so that the various inspectors won’t see where the termites are/were/come from) and itching and scratchy throating.

The good news is: the exterminators are finally coming for real (I hope) this week. Which means I have to clean out my apartment. Which means I stumbled upon some gems of the past.

Like expired Benedryl.

I have an allergy drawer filled with claritin, allegra, zyrtec, and benedryl. I have tons of benedryl, because I don’t want to run out and my reactions had typically involved me taking 100 mg every 2-4 hours. Or, like a pack a reaction. So I stock up, especially since it’s hard to find the brand name non-liqui-gels where I live, and the off-brand ones aren’t as effective for me and I’m allergic to the liqui-gels.

I threw out a TON of expired benedryl. Which, for a girl who was always running low, is a huge accomplishment. My reactions have been so much fewer, my diet more stable, Xolair so helpful, and my instincts much greater that I simply did not need to take nearly as much benedryl as usual. I also realize I haven’t purchased allerga since 2012. I used to have to take zyrtec and allerga daily and a claritin when things got really bad. But that’s not the case anymore. An empty bottle of Allegra that expired a year ago is all I needed to see that I am done with that phase.

Even though I’ve been sick these past few weeks, in general, I’m getting better. Better physically and better at keeping myself safe. My medicine is expiring without me having to use it.

#gratitude

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A Sketch That’s Funny For The Wrong [IMO] Reasons, A Podcast, and Other Thoughts

It’s a stream of consciousness type of day, so don’t expect any order to this post. Order’s overrated anyway. Not overrated? David Wain and Michael Showalter’s new romantic comedy spoof “They Came Together” starring Paul Rudd and Amy Poehler, available in limited theaters and on demand. God, they are comedy geniuses. No, that has nothing to do with allergies. Except maybe it does. There’s a scene

[SPOILER ALERT]

in which Amy’s character gives her order to Paul’s character at a coffee shop and it’s completely wacky and overdone and impossible to remember except he totally remembers it and it’s definitely love, and I feel that way sometimes when I order food. She was being spoofy, but I completely related because I’m a completely awkward food orderer, and any man who can remember the random nuances of my diet is AOK in my book. Or a keeper, as they say. (Speaking of, did you guys hear about the travesty that is muggle quidditch players getting too cool for Harry Potter?)

[END SPOILER ALERT]

Sort of related to Harry Potter — well, very related to Harry Potter — I do this podcast called Common Room, where all things pop culture (especially “geek” pop culture, like HP) and food, fitness, and fashion converge. First of all, totally listen to it! Second of all, one of our segments is called “Customizable Cooking” where the group of us — a bunch of girls all around the world, from New York to Australia and inbetween — make the same recipe but tweak it in our own unique ways. In a recent episode, we recreated my gluten-free vegan pumpkin oat muffin recipe, which as you may know, has absolutely saved my life. Listen to the episode here (and discover the importance of giving the correct measurements when telling people a recipe).

I recently also made the original cookie recipe the muffins are based on, but as a sheet cake. They came out delicious, if not ugly.

Pumpkin Cookie Cake

One giant cookie!

It’s hard to believe that I invented that pumpkin recipe more than two years ago. Also two years ago? I learned that generic Benedryl doesn’t work as well as the real thing. Today, I dug into the pocket of the blazer I was wearing and discovered some generic Benedryl. I don’t think I wear that blazer very often.

Another thing I don’t do often is eat at communal dinner parties. Much like the characters in this Fourth of July sketch (watch below). In the interest of not spoiling the punchline, if you are a loyal follower of my allergies — or just know the basics, leafy greens, fish, horseradish — you should get why I think the ending is ironic for exactly the wrong reasons. PSA: people are allergic to more than just the popular things, people.

I’m pretty sure I’m still scared of eating spinach. One week from right now, I’ll know if I can eat spinach, and more importantly, how this Xolair thing is working. Last night I had a dream where the vegetables from Veggie Tales attacked me. Like verbally and emotionally. Mostly the tomato. Which is weird, because I can eat tomatoes. I’m not 100% sure if it’s anxiety about spinach or if I’m just reliving my senior thesis about Evangelicals in pop culture because The Leftovers premiered this week.

Which is another thing you should watch.

Things I Learned Tonight While On Benedryl

1. Don’t touch people in grocery stores.

2. Don’t go to the checkout aisle with gefilte fish on the conveyor belt

(one of the above might actually be ok. There’s no telling which, and there’s no telling if it’s the combo)

3. Try to always bring a new bottle of water in the car when driving in case you need to pop some Benedryl on location, and the water that sat in your car all day is burning hot from the 90 degree sun.

4. Singing/rapping is a good test to see if your throat is closing. But also, singing “Hopelessly Devoted To You” and “As Long as He Needs Me” for the better part of an hour is not great for your throat. If you get hoarse, scratchy or generally irritated it might be because you’re NOT a Broadway star.

5. It is possible to cook 95% of a shabbat dinner plus tonights dinner while on Benedryl. And also random turkey burgers because it’s hard to remember that freezers exist while you’re cooking on Benedryl. And also that you can’t eat 4 turkey burgers in one day.

6. The above cooking is tiring. Sitting down feels much better.

7. Sitting down is important.

8. Like, super important.

9. Stopping to sing is also important.

10. Lists should always have ten things.

THE JOYS OF AIRBORNE ALLERGIES!

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…

This is what an allergic reaction feels like.

This is what I imagine is happening in my throat right now.

I typically write after I’ve had an allergic reacton but I feel like memory is less conducive to truth than living in the moment.

About an hour ago, I returned to my desk after lunch. I’d gone home to eat (sometimes it’s just easier to prepare my food at home in the daytime as oppossed to the night before, and eating in my own space is usually safer), ate just fine, drove back to work just fine, sat back down at my desk probably 30 minutes after I’d finished eating (maybe 40?), started my work and

BOOM.

That’s what it felt like. Like some little human or like a green plastic army invaded my throat, set up shop, and stomped their feet.

BOOM.

Throat started swelling. Total dry mouth. I felt trapped. And my voice was gone.

But I don’t know what I’m reacting to. My food was fine. I ate it yesterday and I didn’t pass my overdose limit, and it happened so much after eating. Usually my reactions are within minutes of contact with the allergen.

So I did the logical thing. Called my mom to see if I needed benedryl. In the middle of talking to her, I realized I couldn’t handle talking and breathing at the same time — my airwaves weren’t blocked but the throat swelling was bad — so I answered my own question and took the benedryl. Which, yes, my mom suggested, too.

And I headed back into work. We’re assuming someone ate something for lunch that’s affecting me. Like salmon or wasabi or something? I don’t know. I don’t know why it would linger in the air like this. But all I know is right now, the swelling has calmed but not as much as I’d like it to have. And I have no clue what the cause is, so I bet I’m re-breathing it in.

You know, it’s one thing when it’s food. It’s one thing when I make a mistake, misread a label or something. It’s also fine, I guess, when there’s cross contamination in my food, because it’s expected.

BUT THE FUCKING AIR IN MY OFFICE? Are you kidding?

I know I tend to be upbeat on this blog. I like to laugh, I like to find the hope, but right now I’m just pissed.

Because that’s how an allergic reaction is. Your body goes BOOM, you can’t think straight, you don’t want to leave work because you feel like you always leave work (I mean, on Monday I had a Dr.’s appointment, last Friday the pollen count was so high I couldn’t think straight), you want to keep going because you hate being sick, but BOOM, BOOM, BOOM, the little green plastic army shoots canons in your throat and no one knows and benedryl sort of helps but you’re just over it. You’re just totally over it.

Because telling everyone in your office the details of your health, asking them to not have traces of food on their clothes or to bring back leftovers from lunch because you might get sick, I mean, it’s just ridiculous. It’s rude.

So BOOM.

I wish I had some vapo rub. That sometimes helps. I’m too tired for steroids.

boom?

Steroids, Part Deux.

I just got back from the hospital a little bit ago.  Because I decided to finally do the right thing and take care of myself when I’m having a reaction.  Fine, I decided a little too late – should have gone at around 6:45 when the hives (hives!!! haven’t seen those in forever!) started and the throat started closing.  But benedryl helped until I ate again at dinner time at 8:30.  One of my hives started burning like crazy – had to ice it to stop the pain – and my throat started closing again and I got weak and tired and couldn’t speak easily.  But I could breathe just fine, so…

After much debate and two more benedryl, I made my way to the hospital at 10pm.  Was taken kind of quickly, got a snarky, “So what do you eat?” from the triage nurse, so I responded as though it was a typical question on her form, because I don’t have time for that rudeness, and was ushered off to the “chairs” in the ER.  Because there weren’t enough beds.  Two hours and only one nurse later, I still hadn’t seen a doctor.  And my swelling was subsiding by this point but I knew I’d be screwed for the next few days for not taking care of this sooner.  So I approached the bench, if you will, and talked to a doctor who was doing paperwork.  She said she understood, and ordered some steroids (Prednisone) and Pepcid (an antihistamine that blocks stomach histamines, as opposed to benedryl which blocks other histamines).  Easy as pie.  Because she and I both knew what I was there for.  I was alive, just needed medicine, and doctors don’t prescribe meds in the middle of the night except in ERs.  I waited about half an hour for the prescription to be filled, talked to a resident soon after, and he monitored me for an hour – wherein I got a rash all over my stomach and back (what is with these skin reactions?) but he said it was no bigs and as long as my throat wasn’t worsening, I could go.  So now I’m on the steroids for the next few days (just in time to stay up all night retelling the story of the Jews’ exodus from Egypt, woot Passover! Maybe I’ll pull a Rabbi Tarfon and stay up until the zman comes), more pepcid, more benedryl…

Guess I won’t be trying wheat on day 30, which is tomorrow.   Not sure if this month of a cleanse has been successful or not. I guess I learned that I’m not crazy and that I can take care of myself and how to do so, but I don’t know if I narrowed my allergies at all.  Because I didn’t positive to apples, and all I ate at 6:45 was an apple…so…something is amiss.  But we’ll figure it out.  This’ll end.

Anyway, things I overheard in the emergency room:

1. “I smoked marijuana before I came here because I was nervous about the surgery.  So I thought that if I was gonna die today I may as well enjoy myself and go out with a bang, I was so good when I got here but I’ve been waiting so long it’s all gone now.”

2. “She found the knife, was playing with it, and then tased herself.”

3. “I’m not going to pee in a cup. I don’t have to pee.  I feel like I’m going to throw up, I’m not here to pee.  I’m here to sit down.  And get better.”  BEAT. “I have another cup in my purse from the last person who told me to pee.  I’ll pee when I have to pee.”

Let me tell you, it was no Grey’s Anatomy.  I was dying for Lexie or Christina or someone but mostly it was a bunch of tired NYers who are total honey badgers (ie: don’t give a fuck).

And yeah…I’m awake.  That’s what ‘roids and 5 hours in a hospital will do for you.