Cindy Takes Xolair!

Today was the big day…Xolair day!

I’m a little too tired (understatement) to reiterate all the feelings I’ve had about the ‘lair (is that a thing?) up to this point, so feel free to play catch up in my last post, here.

But the TLDR version: I survived! There was a slim chance of anaphylaxis and guess who didn’t have that reaction! Me!

Seriously, for something that’s kept me awake for months, it was largely uneventful. I’m exhausted from the protective steroids I’ve been on and the lack of sleep that comes with that whole to-do, but really, today was fine. I got a shot, I hung around the doctor’s office for four hours, watched Good Will Hunting for the first time, and went to work in the afternoon like nothing had changed.

And now we wait. In June, I get to challenge foods I know I’m allergic to, in order to see if the Xolair is doing its job of masking the IgE stuff on my cells (I’m not a science person). I keep trying to picture myself eating fish or lettuce or spinach or cabbage, and can’t. But hey, that’s June Cindy’s bridge to cross, and it’s a damn good one.

In the meantime, I’ll keep getting Xolair injections once a month, with steroids, zantac, and zyrtec in my system. I’ll sleep 20 out of 30 nights a month, but it will be worth it to go to a grocery store and not have to wear a scarf and run through the produce aisle. The possibilities! I feel so blessed right now, it’s hard to even describe.

Also, side note…how had I never seen Good Will Hunting until now???

New plan: every month that I do Xolair, I will watch a movie that I really should have seen already. Kill two birds with one stone. Two birds…and no Cindys.

Good Will Hunting

Food Challenges Rounds 25 & 26: Cindy vs. Peanut Butter (2tsp) and Rum

This week, I completed one year of food challenges! When I started this process a year ago, I thought for sure it’d be quick, that I’d do a few food challenges, and get a nice amount of food back into my life pretty quickly. When my doctor told me he thought it’d be a good year before that happened, I was totally sidelined and confused. Now that it’s been a year, I am grateful for all the foods that are back in my life, but also still running through the list. Fine, so I didn’t do a challenge every. single. week of the year — had to take breaks for holidays, anaphylaxis, and important work events — but 26/52 is a lot. I imagine I have another year left to go. And honestly, it’s not so bad. Keeps my weeks interesting, it’s good to check in with the doctor and get my questions answered regularly, and when I succeed, it’s great. There are some foods I’ve incorporated less than others (I really should eat more barley…but I imagine I will come the winter, something about barley in the summer seems weird even though the weather doesn’t change here), and some that have become staples again (wheat, sunflower oil, lentils). I’ve learned a lot about my body in the last year, about food in general, and about courage. I still get scared every week, but I keep going back. And when it’s fine, it’s really fine. And when it’s anaphylaxis, I just shake a lot and get really cold and feel out of it for a week. That’s what blankets are for, right?

Anyway, so my last two food challenges went really well. So well that the blogging need wasn’t that immediate. I can now have two teaspoons of peanut butter, which is awesome. It’s still not enough for me to actually eat – I can’t seem to figure out the proper occasion for two teaspoons of peanut butter, and am scared I’ll start eating it and want more and get sad, plus I can’t eat crackers that I don’t make myself and that’s not worth two teaspoons – but I will try more soon. I have to take a break to make sure I don’t overdose, so those challenges will come down the road.

After the two teaspoons of peanut butter, I was going to try wine vinegar. But I couldn’t really settle on a recipe with wine vinegar that a) would be normal at 7:30am and b) I’d actually make often. People often get annoyed when I can’t eat wine vinegar, but I never liked the taste and never cook with it myself. Still, I was going to try it to succumb to the peer pressure.  But I couldn’t get to the kosher grocery store in time, and Ralph’s didn’t have any kosher brands. PS, I hadn’t been in Ralph’s in forever, and can I just say, that place is SUPER BRIGHT. Like, I don’t know how people can even see properly after shopping there. I have become a Whole Foods/Farmer’s Market Snob. Penn and Teller would hate me. That makes me question a lot of things. I don’t want Penn and Teller to hate me. I don’t want the version of myself who used to traipse around the Whole Foods in Union Square angrily and bitterly to hate me, either. But that girl could eat more, so what does she know?

Anyway…

I couldn’t find the wine vinegar in the brightly lit supermarket. I decided to wander around trying to find something else to try. This is maybe the most depressing thing a person with my allergy list (aka me, I’m unique that way) can do. If you can’t have processed food and you can’t have lots of unprocessed food, a supermarket is just miserable. I looked at all the aisles, all filled with things I couldn’t have, and got overwhelmed by how much there was to try. Did I try another cereal? No, aren’t Honeycomb, Kix, Chex, and Captain Crunch enough? What kind of person needs Frosted Flakes (omg, me). Did I try Entenmann’s donuts? Almost, but I could just picture my doctor’s face when I brought those in, my mother’s reaction to that phone call, and just the general public’s “what’s wrong with you, who needs donuts?” collective sigh. And also I was scared to read the ingredients and see cottonseed oil and know I could never try them again. (Just googled the ingredients for glazed pop ’ems which would be the kind I’d try, and they have xanthan gum in them. So fuck Entenmann’s. They are not on team Xanthan Gum is evil).

I thought about trying other sauces. Maybe a mustard with “spices?” Maybe a different kind of pickle? But all of those foods seemed useless to me in my life. And it was close to 11pm and I was getting tired. So I decided to try white wine. I headed over to the alcohol section, but I couldn’t decide which wine to try. Pinot Grigio? Chardonnay? It’s been so long since I had white wine, and the last one I had was Moscato (which I couldn’t find) that I just got overwhelmed. Plus, if I can have red wine, then is it that important that I have white wine? And then I realized — RUM!

This year on Cindystock, we gonna sip Bacardi like it's my birthday.

This year on Cindystock, we gonna sip Bacardi like it’s my birthday.

The last few times I’ve been at bars, I’d had too much wheat for Heineken and the bars didn’t have corn or potato vodka. Not that I’m the biggest drinker, but I do get “drinks” for work, and it’s frustrating when I do go out to have to look through the menu and not drink. Especially when I make someone else be the designated driver, or pay for a cab. That’s just rude to someone else’s night. But rum…rum is on every menu. And I didn’t think I’d be allergic to it. So I grabbed a bottle of Bacardi for myself and one for the doctor and nurses as a thank you for a year of food challenges gift, and 8 and a half hours later, had a rum and coke in the doctor’s office.

I passed! Not surprised, but very happy.

Also, after the overwhelmed feeling the night before and the stress of a food challenge, it was sort of nice to have a shot and a half of rum first thing in the morning. Not to become an alcoholic or anything, but after the panic and fear before every food challenge, getting a little relaxer in is sort of nice.

I celebrated that night at karaoke, where I rapped like nobody’s business. I’m getting better at that, now that it’s my go-to check to see if I’m breathing. I’ll be Nicki Minaj yet!

On Monday, I’m going to re-challenge some foods I stubbornly believe I can have but just overdosed on at my last challenge of them. Olive oil is Monday (scared), onion powder the week after (scared), and pasta after that (petrified, mostly because I’ll be so mad if it doesn’t work).

FOOD CHALLENGE TALLY:

Cindy: 18

Allergens: 7

Undecided: 1

Up Next: Olive Oil, take two.

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.

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 creativity. Or nix the cheese and use red wine and garlic. It's a pretty picture, screw the actual recipe!

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!

Food Challenge Rounds 20 & 21: Cindy vs. Apricot and Cottonseed Oil

I didn’t get a chance to write about last week’s food challenge – dried apricots – but that’s pretty ok, considering how uneventful it was. Basically, I ate a bunch of apricots, talked to the doctor for ten minutes, went home, and went on with my life. You know, the way normal people eat food. They just eat it. It was cool to experience that with a food I’ve been terrified of for basically my whole life for no other reason than I can’t tell the difference between an apricot, a peach, and a nectarine and that unsettles me.

So woohoo! I can eat apricots! Celebrate good times, come on. Or something.

I'd rather eat an apricot than cottonseed oil anyway.

I’d rather eat an apricot than cottonseed oil anyway.

Today’s cottonseed oil challenge was a whole ‘nother story. One that starts with two bites of an omelet fried in cottonseed oil and two baby bites of a sweet potato drizzled with cottonseed oil and ends with anaphylaxis.

This was the quickest and most severe reaction I’ve ever had. I started coughing at the second bit of the sweet potato, but figured that sometimes people cough, and took a second bite of the egg (I was alternating sweet potato, egg, sweet potato, egg to make sure I didn’t eat too quickly). After that second bite, I pushed the tupperware away and started panting. The doctor looked at me and kneeled down to be eye level to my sitting in the office chair and asked what was happening.

“Help” was all I could say.

He ran to tell the nurse to prep the epi injection, and came back and said “Tell me what you feel.” Through gulps of air, I explained that I felt like I was running a marathon but I didn’t run marathon and the air was not coming out and I was scared.

The nurse shot me with the epi and then took me to a room for a Benedryl injection. I stayed there shaking for a little while and then poked my head out because my throat started feeling tighter and tighter. They switched my room because the patient occupying the closest room to the doctor’s actual office had finally left (ok, so it was 20 minutes and that person is entitled to be a patient, too, I guess) and gave me more epi. So that meant more shaking but some major relief.

I just sat on the exam table without moving for a really long time, staring off into space, unable to lie down or close my eyes because I was too out of it. Finally, I mustered the strength to take a nap. I woke up periodically for more medicine – some inhaled steroids, more Benedryl – but essentially just lay there sleeping. I’d say “dead to the world” because that’s the accurate idiom, but considering I could have actually died that doesn’t seem so cool anymore).  The nurse brought me some extra sweaters and jackets because I was freezing — it was about 80 degrees in the office and I could hear all the patients complaining about the heat and the nurses on the phone with the building to fix the thermostat, but I was freezing in my t-shirt, sweater, and shearling jacket.

Finally, at around 1pm, I woke up and had enough strength to stand up. I’d been at the doctor since 7:30am. I started eating at about 7:40, and got sick at 7:45. That’s a long time to be at the doctor. They joked that I worked there, and never one to miss moment, I suggested they pay me for my time. They responded they charge by the hour, and we all had a good laugh.

I had enough strength to drive the mile home, which was good, even though the valet guy who is the best in the world offered to drive me home, and  told me he would drive me home at any point if I was this sick. Such a good hearted man.

I got home, called my mom, and slept on and off for the next 5 and a half hours. I’d be perfectly awake one minute, just lying down, and the next minute, I’d look at the time on my tv and realize I’d been asleep for 40 minutes. I guess 100mg of Benadryl, 2-ish doses of epi, and not breathing will do that to you. Kind of knocked the wind out of my sails, but hey. I learned something.

Actually, I learned a few things:

1. I can never have Pringles again (until the food industry realizes cottonseed oil is so unhealthy and they switch to canola)

2. A hello kitty bandaid makes everything better. I’ll totally take Benadryl injections into my hip if it means getting some hello kitty fun.

3. Passover is my favorite holiday even though it’s really not accommodating of my allergies. Like, seriously? Maror and cottonseed oil? Come on.

4. Epinephrine really does work and it’s not scary. Not breathing is scary. Breathing is great.

5. Rapping Nicki Minaj is a good test to see if I can breathe. Because I tried it quietly at the doctor’s office, and only got to the line “he ill, he real, he might got a deal” before I started panting — and that’s only the 5th line.

FOOD CHALLENGE TALLY

Cindy: 14

Allergens: 7

Next Up: Grape Juice (for sulfites and passover. and bc I’m 99.9% sure it’s fine since I have other wine and grapes and raisins and there’s no way I can do a rough challenge while I recover from this lovely bout of anaphylaxis).

Food Challenge Round 19: Cindy vs. Buckwheat

First, I want to say how proud I am that I’ve actually tried the foods I’ve said I would for the last few weeks. No more last minute changes. But I do sort of wish that I’d made a last minute swap for apricots this week, as I’m 99% sure I’ve eaten apricots and been fine (I never actually tested positive for them, or tested for them at all, but for some reason they terrify me and I feel like I need to eat them where I know I’m safe to overcome this totally irrational fear). I wish I’d made the switch, because buckwheat went…mediocrely.

Hey look! It's two foods I can't eat for the price of one!

Hey look! It’s two foods I can’t eat for the price of one!

I cooked buckwheat pancakes in the morning and they smelled FOUL. But when I tasted them at the doctor’s office, they were delicious. So right away I knew something was up, but I can’t really get my head straight before 9am most days and I was operating on almost no sleep and two consecutive 12+ hour workdays at my 8am challenge, so I let it be. After one pancake though, I got this weird airy feeling in my throat and chest. I’ve had this feeling before, and I usually ignore it and keep eating, and then get sick. It’s the impending doom feeling. It happened with pickles, it happens all the time with watermelon, and it used to happen with blueberries and walnuts when I still ate those. So this time, I trusted my gut and asked the doctor if I could stop eating. (I’m learning how to be safe, yay!). He said sure, and we just chatted about his latest Now That’s What I Call Music 45 CD.

And then the tingling started. No big deal, but like, my lips and chin and jaw started feeling…off. Not swollen. Not painful. Just, annoying. And hyperaware. And tingly. Like my whole body had become centralized in my face and I couldn’t balance out. This did not concern the doctor, who said I had no visible signs of sickness. Twenty minutes later, when the tingling persisted but didn’t get worse, he released me, with no medicine. We called it a “slight positive.” Meaning, I can have exactly that amount of buckwheat on rare occasions if I need to. Sort of like onion powder. But, unlike onion powder, I don’t think I’m going to be coming across buckwheat that often. And considering I’ve avoided onion powder successfully since that challenge a few months ago, I think the point is moot.

Anyone 3/4 of a bag of buckwheat flour? Because for $5.99 (for like 4 cups, mind you), that flour needs a good home.

Oh, and ps. Now that I can’t have buckwheat, I feel like I will get more incensed the next time someone suggests I eat gluten-free. Nope. I can eat real wheat (sort of) and I cannot have one of the standard gluten-free wheats, so world, stop asking if your gluten free cookies or cakes or what-have-yous are helpful to me. They aren’t. /endrant

FOOD CHALLENGE TALLY

Cindy: 13

Allergens: 6

Next Up: Apricots

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!

Food Challenge Round 8: Cindy Vs. Cinnamon

“C-c-c-cinnamon lips and candy kisses on your tongue…yum.”

So sing OK Go in their song, “Cinnamon Lips,” on their first album.

Yum is right. Cinnamon is delicious. And it’s very seasonal, so it seemed like a good idea for me to challenge that as my first post-holiday challenge. Plus, I wanted to start with something I was confident about so that I’d be sure to get to work, as there’s too much going on for me to miss a day for anaphylaxis.

It was kind of nice to be back at the doctor’s office after my 7 week break. They were in full swing for Halloween, which was fun. And the doctor and I had some time to catch up while I ate my Cinnamon Toast Crunch – because if you’re going to try cinnamon, you may as well eat it in the best possible form. I’ve been replacing cinnamon with nutmeg for the past 6+ months) and it’s worked well, but somehow I don’t think Nutmeg Toast Crunch would be so great. Plus, eating a breakfast food at 7:30am is kind of nice after the whole tahine, chicken soup, beer challenges.

Anyway, it was DELICIOUS. Sweet as hell, overly processed, but still delicious.

The only thing is, it wasn’t great for my vision. The diplomas on the office wall started to blur and the doctor tried to keep my nerves calm so we’d be able to isolate any reaction. That worked some, but still I felt pretty bad. Not bad enough to call it a food I have to stay away from, but as the doctor put it, “It’s your choice. If you feel bad enough don’t eat it, but you can eat it without concern.” So another one of these half-passed tests. I’m not at risk of dying — YAY — but I probably won’t feel awesome if I eat too much. And I have to be very mindful of overdosing.

Anyone remember this cereal? Totally been craving it, which is weird because a) it’s gross and b) I hate French toast in general…

I can live with that. Like I said, nutmeg is a good replacement for cinnamon, and I can easily remove it from my cooking. But I can eat it in others’ cooking which makes dining out and shared meals just a smidgen easier. And the more I challenge, the more I realize that’s a large part of why I’m doing this. I believe I’ve gotten my list to a manageable size for me. I eat about the same variety as most other people do, only, mine isn’t a choice or a force of habit. It’s a force of body, and that’s fine. Except when it comes to social dining or dining on the go with packaged foods — there, I need some leeway, and I’m glad that cinnamon can be a part of that leeway.

I’m still deciding what to do next. It’ll likely depend on work, though, I can’t really predict what my reactions will be. I thought cinnamon would be a slam dunk — as I did pasta and olive oil — and I thought for sure I’d fail beer. So who knows? I’ve been craving peanuts, which happens almost never, so I think that might be a sign that that’s next. Gotta love some extra protein.

Whatever I choose next, I know the appointment will be fun. It’s on Halloween, and the whole doctor’s office is super pumped about the holiday. I kind of can’t wait to add to the absurdity of these food challenges with a costumed doctor. The only catch? I probably should wear a costume, too, and I have no ideas…So, I challenge you:

1. What to test next?

2. What do I dress up as?

Food Challenge Tally

Cindy – 6

Allergens – 2

Up Next: TBD

September’s Living with Food Allergy Blog Carnival

I’m so thrilled to be a part of this blog carnival, with some amazing posts by other writers and members of the food allergic community.

Weird that I think of it as a community nowadays, but I do. It’s as though at every corner I meet someone new with a food allergy or two…or several. And it’s kind of nice to know that people are more open about this health issue and what it means for how we eat, etc.

Anyway, check out the carnival here. I particularly connected with The Journey of Food Allergies post and I thought this teenage boy’s take on kissing with a nut allergy was just delightful. But read the rest of the posts, too — lots of great information in there! And thanks to Caroline “Grateful Foodie” for hosting!

Flying with Food Allergies

Delta’s safety instruction video announces “safety is our number priority.”

I call bullshit.

Sure, air safety is a big priority, but is safety — as a whole, people being safe — really the airline’s number one priority? No. Because if it was, they wouldn’t serve free peanuts and peanut M&Ms on the flight.

How necessary are peanuts on flights?

Flying is hard for a food allergic person. And there’s really nothing that can be done about it, nor am I advocating flights where there’s absolutely no food allowed. I get hungry on planes, too. Plus, the whole ear popping at takeoff thing — you need to chew. So I’m about to get into a problem for which there really is no solution. But there are mitigators, and I am advocating for those.

The air on a plane is stale and recycled. So if an airborne allergen is introduced into the plane, there is no fresh air cycling in that can diffuse the situation. The food allergic person will continue to breathe in the contaminant. Hopefully, said person always carries Benadryl on them. Not even a bad thing, considering sleeping on a plane isn’t super easy. That said, continuing to breathe in the cause of the allergic reaction is unpleasant and in some instances, can result in an anaphylactic reaction that only an Epipen can stop.

You tell me – would you prefer your flight be landed so someone can go to the hospital if it meant you could eat peanuts, or would you rather eat something else?

It’s not just the air. On my flight last night, my tray table was COVERED in crumbs. Not only is that disgusting for the average passenger, because ew, other people’s crumbs, but it’s really dangerous for someone like me. I don’t know what food those crumbs came from. Thank God I was just looking to use my tray table for my laptop – had I put food on it, I wouldn’t be able to eat. Luckily, I just put my laptop on my lap and went about my business. But I couldn’t put it on the tray table because I can’t afford my laptop getting the allergens of the crumbs. It’s more than tray tables, too. Seats aren’t cleaned, arm rests aren’t disinfected. People touch everything, and with an allergen — that could be more than just a cold. If someone eats a salad, touches my armrest, I touch my armrest, and I pop a pineapple slice into my mouth, I’ve just ingested their xanthomonas campestris-covered lettuce allergen. 

Since I’m part of the solution, and not the problem (or at least I strive to be) let me offer some ways I think airlines can make safety actually their first priority — regardless of whether the seat cushions can be used as flotation devices.

Number 1:

Have a clear allergy policy. Virgin America has no allergy policy, but they also have no free food, so one is less likely to run into a problem, given that people aren’t necessarily eating, and if they are, it’s not airline-mandated peanuts. Delta, on the other hand, has a policy, but you’d be hard pressed to find someone who knows what it is. One time, the policy was that they wouldn’t serve peanuts to anyone within 3 rows of the allergic person. This is dumb, because as I mentioned above, air circulates and people touch things. And when the person next to you orders peanuts because he sees everyone else eating them, and the flight attendant says “Someone within three rows of you has an allergy, sorry,” the person can get pretty ticked off, and who knows what they will do when they find out it’s you. (Luckily for me, when that situation arose, the person in question had a son who had previously hit me in the face with a remote-control helicopter, so we were even). On my recent flight to NY, the policy was, per the gate attendant, “Call in advance or tell the flight attendant.” On my return flight, the policy was — and rudely stated, I might add — “Did you tell the gate attendant?”

You know how there’s a space when you make a reservation for travel with infants or a wheelchair? How hard is it to add an option to the click-down menu that allows for food allergies? This way, everyone knows in advance, the traveller is responsible for any and all information, and the airline can change what it is serving accordingly. Food allergies are a disability. They ought to be treated as such.

Number 2:

Have water readily available. If you’re going to have sick people on your flight, at least let them hydrate themselves, take medicine, and flush the allergen out of their system. On my beloved Virgin America — on which I’ve gotten sick multiple times — there’s bottled water at the bathrooms, you can press a button and order as much bottled water as you’d like, and the flight attendants even give it to you before takeoff if you finish it before the runway (gotta love FAA regulations). On Delta, and I presume other airlines, you have to ask for water. Which means waiting for the flight attendant to pass you by, because they don’t listen to the button things above the seats. That gets you one cup of water. Not necessarily as much as you ask for. And not a cup that you can be assured wasn’t handled by someone who just ate and touched the rim. Buy fucking bottles of water, and give them out. It’s a basic human need, whether you are allergic or not.

Number 3:

Don’t be rude. If a passenger mentions a food allergy, be accommodating. Do not scoff, do not belittle them, do not roll your eyes. Do not mutter under your breath to your coworker how inconvenient this all is. Do not tell other passengers how ridiculous it is. If you’re going to be a glorified waitress, at least have half as much dignity as an ordinary waitress. It’s nice to be nice. I don’t give a flying fuck if you’re tired and being a flight attendant sucks. It does suck. I have a a friend who was a flight attendant and hated it. But it’s your job, and you don’t have to like it, you just have to do it, and if you can’t do it well, do something else. Life is short, so don’t be an asshole.

Number 4:

Maybe airports and airlines can sell fewer or no peanut and nut-ridden snacks. Avoiding the top 8 allergens totally would be nice. Just sell other foods. They exist! I promise. And hungry passengers will eat anything. Sell potato chips and dried fruit. I get that wheat and dairy are hard because bread and milk are life staples. But sell enough alternatives without them so that if a situation arises where someone can’t be around those foods, you can accomodate. Or just let the wheat-free people have a food option. My Delta flight offered pretzels, cookies, and peanut M&Ms (though the latter was not offered on my flight, thanks to me, even though it was displayed on the carts). Is one wheat free option that hard? Chips? It’s crazy, in this world where everyone and their mother is gluten-free. Airlines seem to be stuck in 1991. That’s not that reassuring.

Most of these rules won’t help me. I can’t see outlawing lettuce or horseradish on a plane, not to mention the 30 other foods I’m allergic to. I get it. I can only hope for people as nice as the woman who sat next to me on my flight last night who, when she noticed her sandwich was bothering me after overhearing my conversation with the flight attendant re: peanuts, asked if her food was an issue. I said it was, because of the lettuce (though I thought it was tuna, whatever, I have hazy eyesight when I react), but that she shouldn’t worry, I had medicine. She offered to eat it quickly, and then asked the flight attendant to dispose of it elsewhere so I wouldn’t get sick. She is a lovely person, and I owe her a lot. I fly often, I’ve taken Benadryl on planes often, and she was the first person to notice and be kind.

The flight attendant’s response, “What, she’s allergic to lettuce, too? Ugh, fiiiiiine.” She later proceeded to eat a salad only one row in front of me (but I thought you had to wait 3 rows for allergies).

I’m allergic to lettuce. Doesn’t mean I don’t have ears and eyes. Ears and eyes which I also use to listen to/watch your safety instructions, which assure me you will do everything to make sure I have an enjoyable flight, and my safety is your number one priority.

Might want to update that demonstration…