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 17: Cindy vs. Roasted Garlic Hummus

I was terrified before my challenge this morning. The last time I had sesame, I just barely passed, and since Sabra Roasted Garlic Hummus has some tahine in it, I was nervous. But I miss hummus, it’s a great and popular food, and I know I’ve eaten it successfully on may an occasion. So it was worth a try.

I used to eat these every Friday for lunch. Good to know I can know eat this on occasion.

I used to eat these every Friday for lunch. Good to know I can know eat this on occasion.

And in fact, I am not allergic to it! Hooray! That part of my doctor’s visit was uneventful. I ate half the tub of the snack size hummus, and was fine. Until about an hour when I got a sesame migraine, but that’s nothing a little chocolate, caffeine, and tylenol can’t handle. I probably won’t eat hummus often, but on occasion? A hummus migraine is better than a hunger migraine, right?

Plus, the snack pack came with pretzels. Which I have been DYING to try but the doctor has said it’s a bit of a waste of  challenge because I can already have “so much” wheat. But, he let me eat these pretzels. I “accidentally” ate all of them, which was a badish idea, but hey. I feel okay, I ate pretzels, and I am renewed.

What did terrify me, however, were the following insights:

1. There’s no solution to my horseradish problem, except getting someone to shop for me (as the doctor put it, “Don’t you work with a lot of men? Shouldn’t they be chivalrous and help you?”); asking someone who works in the store to get me an item from the back while sating far away from the horseradish, and trusting that they will not touch anything bad in that process which he said he wouldn’t trust them about; buying the items that are too close to the horseradish in a non-organic store that wouldn’t sell horseradish, but that’s a bad option because I need organic foods. Hi, rock. Hi hard place. Nice to be between you both.

2. The other solution he presented was eating more vegetables, so that the ones I can eat aren’t in the horseradish section. But to do that, I have to try vegetables. With which I have a bad history. But he said he wants me to try everything I have had reactions to in the past (with some obvious exceptions, like fish and horseradish). That’s why we’re doing this, he explained. He wants to do a double blind test, where he blindfolds me, feeds me the food and a placebo, and we spend all day making sure I don’t die. Because there’s a teeny chance I’m not allergic to the foods themselves and just think I am, or outgrew them, or something. That’s why we do food challenges in the first place, he explained. So here’s the thing. I’ll have to take off like a month from work all tolled, and potentially die. Like, “Hey, I can’t come in today, because I’ve decided to out myself in a precarious near-death situation, but dont worry, there are epipens, so I’ll be decently okay, but probably out of it for a week, but in the end there’s a small chance I can eat lettuce?” How does that work? I can;t imagine waking up in the morning and knowingly feeding myself cauliflower. That’s like waking up and saying “Today, I’ve decided to drive with my eyes closed. But it’s cool, I have airbags and bandages and a paramedic in the car, so if I’m almost dying, someone will fix me.” Bad idea. And yet, so is not eating. Slow death vs. death challenge in a controlled environment? This is like the real Fear Factor, people.

3. He also wants to test antibiotics when we’re done with foods. That’s also a full day, because those last in your system for a full day. Basically, I’d come to the office, take biaxin that has no additives, made by his pharmacist with special care, and see what happens. Last time I had biaxin, I blacked out in Mrs. Agassi’s 10th grade English class. But this time, I’d be sinus-infection free and in a doctor’s office, so…cool? I wonder if it makes more sense to do those challenges when I’m already sick. So a) I miss fewer work days and b) I’m not on unnecessary meds.

In good news — because amid all my fear, I have to stay sunny and appreciate this ridiculousness — there’s a new epipen on the market. It’s actually not an epipen because that’s a brand name. It’s an Auvi-Q and it’s badass. Thanks, T, for sending me the info from the NY Times. The doctor showed it to me today and I’m obsessed (what has my life come to?!). It’s the size of a nano and the thickness of a cell phone/two chocolate bars, and it TALKS TO YOU. Like it says, “remove the red cap. Place against your thigh. [it clicks to inject] 1. 2. 3. 4. 5. Inejction complete.” It’s so slick and small and easy to carry and not pencil-case shaped and an idiot can use it and feel comfortable. It’s like a GPS epipen. It’s genius and I want one.

I don't know why I'm so excited about a medical tool but I really am. Look how sexy this is!

I don’t know why I’m so excited about a medical tool but I really am. Look how sexy this is!

In other good news, the world is starting to hate xanthan gum. Ten points to the anti-xanthan gum crusade! And thanks, E, for sending along this brilliant article.

I have the best friends, and I love the NY Times. That’s the moral of this story. Despite all the fear, all the anxiety, all the unclarity about how to proceed, I know I have support, I know the world is listening in its own way, and I can sort of kind of eat hummus and pretzels. So this is a win. Just a “tread carefully as we move forward but never stop moving forward” kind of win.

FOOD CHALLENGE TALLY

Cindy: 13 (including the sabra pretzels)

Allergens: 5

Next Up: Buckwheat (can someone tell me what the hell buckwheat is? It’s on my list of not terrifying things to try but I don’t know what to do with it. The doctor said “make pancakes” but that seems unnecessary).

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!