Xolair Round One: Complete (And the Story of How I Was Once Spider-Man)

Four months ago, I started this treatment called Xolair, that in theory will help mitigate my allergies. You can catch up on the first time here. But the short version is, I get an injection once a month and after four months, I challenge something I know I’m allergic to and see if I survive. Since one of the risks of Xolair is anaphylaxis, my doctor also has me taking steroids for a week out of the month to prevent anaphylaxis on the day of.

If you’ve noticed that this blog hasn’t been updated much in the last few months, it’s because I haven’t really known what to say. This treatment has put my normal food challenges on semi-hold (finding time between steroids and travel to challenge a food properly has been interesting, and yielded only one challenge: a fourth tsp of peanut butter which went perfectly well). It’s also put my feelings about food allergies into this weird state of confusion. Like, this might be the end of them. THIS MIGHT BE THE END OF THEM. What does that even mean? What does that even look like?  I can’t fathom it, and every time I think too much about it, I get scared that THIS MIGHT NOT BE THE END OF THEM. And I know what that looks like, and I can handle what that looks like, but damn, what a let down that’d be.

However, on this, the day of my last shot before the big challenge, I feel compelled to write. If only to organize my thoughts. Though, with the steroids fucking with me the way they are, I’m not promising much organization.

1. I LOVE how many movies I’ve seen in the doctor’s office. Good Will Hunting, Stand By Me, Mystic River, Dazed and Confused, and Pulp Fiction. I saw Pulp Fiction today and I just never want to do anything else. Movies are good! I want the Xolair to work so that I’m forced to see the rest of the amazing movies I’ve somehow missed (somehow = being too much of a “too cool for school” indie kid who preferred TV and things no one ever heard of, with a soft spot for romcoms).

2. Steroids are fucking weird. My reactions to them are wholly inconsistent. Sometimes I’m awake for days. Sometimes I fall asleep crazy early and wake up every hour exhausted. Sometimes I sleep just fine but have so many thoughts I don’t know which are real and which aren’t. Sometimes my legs hurt so badly I can’t sit normally. Sometimes (today) I giggle so hard I cry at literally nothing. Sometimes I yell at everyone around me about things that are irrelevant. Sometimes, all of the above. Sometimes, none of the above. Every day is different, and especially every month is different. Imagine PMS but more unpredictable. So maybe pregnancy? But the end result isn’t a baby, it’s just sobriety. Anyway, I’m extremely grateful to my family and friends who put up with all of the yoyo-ing, and especially who tell me which of my reactions are me and which are Steroid Cindy. Steroid Cindy is fun in doses (ha, doses!) but she isn’t real Cindy, and thanks to everyone who gets that and helps me get that.

3. I’m eating spinach on July 9. SPINACH. Here’s my relationship with spinach thus far in my life:

As a child, I knew spinach was something Popeye ate but I didn’t.

I would often pick up spinach calzones for my sisters from the local pizza store. Sometimes, they’d give us broccoli ones instead and those were not good. I was never particularly good at picking up the calzones because I couldn’t tell the difference between spinach and broccoli. Both were green things I didn’t eat that smelled funny.

I tried spinach at some point in my preteen years. I ate it cooked, but never raw. I HATED it. I hated it because it would make everything dark and angry, and I’d always feel the need to fall asleep, sometimes clutching my stomach. I assumed that this was a perfectly normal reaction to spinach so I never said anything. I’d read in books that spinach was a food kids didn’t like, so I assumed the reason was because it was dark, angry, narcolepsy-inducing, and hurtful to stomachs. Why should I have been different from all other kids? So I ate my spinach like I was told, and secretly took naps, and that was that. Until one day I threw a temper tantrum about not wanting to fall asleep, and my mother, who knew that spinach isn’t supposed to just knock you out, told me I was describing allergic reactions and that I should not eat it again.

I started experiencing airborne symptoms to all leafy greens around the time I was 15. I believe (and there’s some research on this) that the stench of 9/11 and the pollution that followed increased my allergic symptoms. I am grateful that of all the losses I could have experienced that day, I only lost the ability to be in the same room as salad.

During my sophomore year of college (so 2006 I think?) I had a doctor’s appointment to check out a sprained ankle. I took the train into Boston, got an aircast at the doctor, ate lunch at this great little restaurant downtown while reading a book — god I miss dining out alone sometimes — and noticed that my eggplant sandwich had a spinach leaf in it. Having not had spinach for years, I figured, no time like the present for an impromptu food challenge! (Though I didn’t know the term then). Anyway, after a few minutes, I realized I was getting sick. I was naive and didn’t carry Benedryl on me, so I did what anyone would do — I left the restaurant and got on the train heading to my next destination. The Park Street station never seemed so big. I remember stumbling through the station, gasping for air, and finally making it on the train, completely exhausted from walking and breathing simultaneously. I hopped out of the train at Copley, and called my best friend T from a CVS. I figured she should know I was sick, because you know, calling the person who’s in Ithaca and not Boston is totally logical in an emergency. But really, T is super smart, and encouraged me to buy the Benedryl even though I had to take an escalator up to the second floor of the CVS to buy it, and to buy a bottle of water, too. She told me to take the pill in line before I paid, and not think about stealing. The line was SO LONG. She said that no one wanted me to die in line and that it’s not like I wasn’t eventually going to pay when it was my turn. So, anyway, I took the pills and went to the commuter rail station, where I found the train pulling away as I approached the platform. With a sprained ankle and high on the Benedryl — not to mention woozy from the reaction — I grabbed hold of the conductor’s outstretched arm and jumped onto a moving train. I WAS SPIDER-MAN! Then, I slept on the train. That was the last time I ate spinach. So you can see why I’m scared to eat some now…

The good news is (okay, I’m starting to think I needed to have blogged in these interim months!) is that I’ve noticed a change. I was thisclose to horseradish while grocery shopping after round two and NOTHING happened. In fact, the reason I was so close was because I was able to get close to horseradish without noticing, whereas I usually get dizzy as soon as it’s nearby and then locate it to confirm the dizziness. I wasn’t dizzy, looked for the horseradish and it wasn’t in my eyeline, and wound up leaning over the bin like a regular person while picking out a suitable eggplant. I also was around salad and fish numerous times — sometimes even while eating — and was fine. So this drug might be worth it’s salt. (Literally. The steroids make me crave salt like the opposite of an open wound [A closed wound? This metaphor makes no sense..]).

As a closing thought: the song of the day, per my coworker who heard I’d finished my first round of shots:

 

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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…

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.