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…

Food Challenge Round 24: Cindy Vs. Peanut Butter (1 tsp)

Let’s get the easy stuff out of the way — I’m alive!

I was really scared I wouldn’t be. I’m a little bit scared every time I do one of these challenges, because when you think about it, I’m basically testing myself to see what foods might kill me and that means I have a 50% chance of getting a life-threatening reaction once a week, but this week I was particularly scared. Though the strongest reaction I’ve ever had to peanuts was mildly itchy ears during my most hypersensitive state (the same time I decided I needed to seek medical attention), the commonness of the allergy scared me. So did dying like an idiot. Like, if I’d god forbid died with the cottonseed incident*, at least my obituary would be interesting. But eating peanuts on purpose in an experiment? That would just read “Cindy Kaplan is a moron, and well, duh.” Like, how dumb do you have to be to an allergic person and eat frikkin peanuts to see what happens? So most of my day yesterday was spent panicking, crying, praying, and seeking support as I worked through the fear.

Decided not to go with Jif…they don’t sell it in Whole Foods and I’m too lazy to shop elsewhere, and come on, rapeseed? Over it.

Turns out, there was nothing to be scared of! I had a teaspoon of peanut butter this morning – the crunchy kind – and it was DELICIOUS. And I’m fine. It just felt like I was a person eating delicious food. Not like a hesitant person, not a twinge of a headache, just, oh, here’s a spoon with peanut butter on it, here’s my mouth, ok cool. I’d forgotten how awesome peanut butter tasted, and how funny it is when it sticks to your mouth. It’s the food that just keeps giving!

After half an hour of chitchat/observation — not the 2 hours I’d planned on — I was sent home. Next week, I’ll try 2 teaspoons of peanut butter, and I’ll keep increasing my peanut butter threshold until either I get sick or I reach my own personal quota. I’m thinking about 6 teaspoons. I never liked much more than that. In case you’re wondering why this challenge is so different, it’s because peanuts are so prevalent so they take every precaution. Personally, I’m more scared of cottonseed oil, but my threshold for that is basically nonexistant.

Anyway, now I can eat things that have traces of peanuts (assuming the other ingredients are fine…I had been so excited about having Crunch, Kit Kat, and M&Ms again but there are other questionable ingredients in those chocolates so that’ll have to wait…but Scharffenberger is not a bad consolation prize), and I can eat 1 tsp of peanut butter (the fancy organic kind I bought) 3 times a week.

So basically, my life changed today. I couldn’t be happier or feel more blessed.

FOOD CHALLENGE TALLY:

Cindy: 16

Allergens: 7

Undecided: 1

Next Up: More Peanut Butter!

*random halachic (jewish law) thought: do I have to say birkat hagomel (the blessing for surviving a life-threatening situation) after anaphylaxis? What about after successful food challenges? How different is the risk of trying peanuts from the risk of airplane travel or prolonged illness or a car accident?

Seriously, Whole Foods? Or Should I Be Mad at HuffPo?

Today’s Huffington Post featured a story about an error at Whole Foods. Basically, a bunch of stores carried a curried chicken salad and a vegan version of the same salad that had mixed up labels. In addition to this being annoying for die-hard vegans or chicken lovers, the article also notes that the vegan version contained soy, and the chicken contained egg, and due the mislabeling the allergy information was also incorrect.

And then the article says, “The company, based in Austin, TX, says no illnesses have been reported.”

Um, right. Because most people don’t call up Whole Foods mid-anaphylaxis and say “Hey, any chance your chicken salad was mislabeled? If so, I’d like to report an illness” Most people take epi and then spend their days wondering what got them sick and how.

I once called Trader Joe’s to get answers to why I had a reaction to their food. This was actually the incident that spurred my new allergy testing. I got cheese and crackers from Trader Joe’s for lunch, and a few bites in, starting losing my eye sight. I went to get water, and was shaking as I walked back from the water cooler. Then, BOOM, something happened to my breathing that felt, seriously, like a BOOM, like someone punched me in the lungs and in a Nate Dogg circa Next Episode voice was all “Hold Up!” and I threw my benedaryl at my friend/intern T and he scrambled to open the benadryl and my boss at the time asked if I needed to go to the hospital and I said no and then a minute later was all “I think I should go to a hospital” and my coworker got me a mug of water and looked up directions to St. John’s and T opened the benadryl with his keys and I went to the hospital and they gave me more medicine and asked what I’d eaten and I’d told them that I didn’t know why cheese and crackers did this to me and I decided it was probably the rennet because I didn’t know what rennet was. (If you’re wondering why that was a the world’s longest run-on sentence, it’s because that’s what the moment felt like). Anyway, a little while later, I had T unhook the oxygen from me and tell the nurse I was going back to work. We bought a box of donuts, I went back to work and felt like shit for a while. And then my best friend told me I needed to go to see an allergist because my constant reactions were getting ridiculous, and finally I agreed.

Anyway, after that, I emailed Trader Joe’s because I was super curious. I have done this like a handful of times in my life, and I’ve had way more than a handful of allergy attacks in my life.

This is the conversation we had:

Me:

“Last week, I ate the mozarella balls, and had a severe allergic
reaction. I had to be rushed to the hospital. I have many food
allergies, so I always check ingredient lists prior to eating food. I
double checked the cheese, but none of the ingredients listed match my
allergies. Please let me know if there are any ingredients not listed
in the cheese, or perhaps what “herbs and spices” are used so that I can
make sure I am not at risk in the future. It’s very dangerous to leave
ingredient information off of products, as not all food allergies are as
mainstream as treenuts, milk, soy, etc.”

TJ:

Thank you for providing this valuable feedback. We would like to extend
our apologies for the disappointing experience you had. We believe that
quality is essential to good value, and that’s what we are all about!

I have notified the appropriate department regarding your experience,
and we will continue to monitor this product for future trends. Please
be assured that we do take quality control issues seriously and all
ingredients are fully disclosed within the ingredient list. Trader
Joe’s does not hide ingredients in any product.

I also wanted to make sure you are aware of our “Product Guarantee.” If
you are dissatisfied with any product purchased in our stores, you can
take it back for an exchange or full refund. We stand behind our motto,
“We tried it! We liked it! If you don’t, bring it back for a full
refund, no questions asked.”

Me:

Can you let me know what specific herbs and spices are included in the product, given that it only lists “Herbs and spices?” If I’ve developed a new allergy, I need to know, as this is potentially life threatening.

No response, as their email address doesn’t actually accept incoming messages. Just an auto reply that I should talk to someone in the store. But come on, we all the know the cashiers in the store didn’t make the cheese.

Anyway, after a conversation like that, why would I bother talking to another company? I’m sure the people who ate this soy chicken and got sick probably didn’t call Whole Foods. Or if they did, it wasn’t when Whole Foods was aware of the issue and they probably got a stock response. That doesn’t mean no illnesses occurred. And it sort of bothers me that the article suggests that. It makes allergies — and especially allergy labeling — seem like no big deal. But really, it’s just not the sort of thing you call people about. That’s a big difference.

Ah, nothing like dissecting journalism.

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 23: Cindy vs. Barley

I went into my barley challenge this morning with mixed feelings. On the one hand, I knew I could eat barley in its malted form in Heineken and flour. On the other hand, even though I can have wheat, the processing of wheat in pasta made me vomit while driving a car and subsequently pass out for a few hours. So, you know. You never can tell.

Luckily, though, pasta stays its own unique experience. I ate barley this morning – just plain boiled barley with a touch of salt – and did not get sick at all. And, even better, loved the taste of it. Who knew barley was delicious? I can’t wait to explore interesting barley soup and risotto recipes. Totally open to recommendations, too, but none with mushrooms, please (what is it with those two? Seriously, can someone who eats both please explain why they taste good together? I’m so curious and I’ll never find out).

And, now that I can eat barley, I can have one more of the seven species of Israel. These are foods that were brought as a tithe to the temple and are still traditionally eaten on Rosh Hashana and other holidays. They’re like the holiest foods, I think, and it bothers me that I’m allergic to so many of them.  They are wheat, barley, grapes, figs, pomegranates, olives, and dates. And now, I’m only allergic to figs, pomegranates, olives, and dates. As soon as I get olives back — someday, right??? — I’ll be back to where I started, with the majority on my side. I didn’t realize how happy it would make me to get barley back, but it really, really does.

Can’t wait to make this! Well, after I adapt it to exclude the chicken broth (waste of time/chicken), onion, white wine, and replace the olive oil. So basically, I want to make barley with thyme, pepper, parmesan cheese, carrots, and maybe I’ll be creative and throw in a pepper for added flavor. Or nix the cheese and use red wine and garlic. It’s a pretty picture, screw the actual recipe! (or don’t: http://www.seriouseats.com/recipes/2008/12/healthy-delicious-barley-risotto-recipe.html)

In other good news, I’m going to FINALLY be trying peanuts next time. Originally, my doctor had recommended we do a full day double blind challenge for peanuts. That was simply never going to happen, since I can’t take a whole day off of work just for the ability to eat peanuts three times a week, maybe. Loss of a day’s pay plus high risk of anaphylaxis? No thank you. Refilling my epipen prescription is more than my salary, so not worth it. But, I’ve been craving peanuts lately. I’ve been trying to smell it, I’ve been totally jealous of the office dog when she licks her jar of Skippy. I mean, all I want to do is just eat peanut butter from the jar and maybe sneak a few honey roasted peanuts and Butterfingers and Reese’s cups. Yum. So I asked the doctor again if peanuts were something we could do. Now that I’ve been getting better and since he’s seen how quickly my anaphylaxis actually comes on, he said we can knock the peanuts out in a regular challenge in 2 hours instead of the usual 20 or so minutes. It’s not going to be a double blind, because unlike most patients, I believe I am not allergic to peanuts. I’d probably convince myself I was fine with the peanuts in the double blind, I want them that badly.

So next time I food challenge — date TBD, depending on how my scratch test goes on Monday — I’ll be eating peanuts. And I better succeed, because I want them so so so badly. Plus, how baller would it be to be allergic to as many things as I am allergic to, and NOT be allergic to peanuts, the most popular allergen? I’d only be allergic to 3 of the top 8 (thought shellfish is iffy since I have no way of challenging it and keeping kosher). Fish and nuts. But I don’t want to get my hopes up either. Peanut anaphylaxis seems like the sort of thing you don’t want to induce upon yourself. It just seems socially awkward.

The only thing is, I want to eat Skippy crunchy peanut butter because it’s the best. But, it turns out, they use cottonseed oil (and something called “rapeseed oil” which is an antiquated name for canola oil, but I guess Skippy didn’t get the memo that people don’t like to eat things that are called rape). So no Skippy for me. Because cottonseed oil can kill me. Not because I don’t support poor verbage (which I don’t). All peanut butters use rapeseed, so that’s a non-starter. But I will, like a choosy mom, choose Jif. Because it’s the only name-brand peanut butter that doesn’t use cottonseed oil. Though, interesting fact, now that I’ve spent my night researching peanut butter — they make peanut butter with fish in it to increase omega 3s, and the reduced fat peanut butter is only 60% peanuts and 40% chemicals that sound like they can kill you. Who knew peanut butter was so darn complicated?

FOOD CHALLENGE TALLY

Cindy: 15

Allergens: 7

Undecided: 1

Next Up: PEANUT BUTTER!