Wearing a Scarf in the Grocery Store

I’m taking a writing class, and wrote a rant last week when I had to deal with the drama of paying out of pocket for my Epi-pen to replace my Auvi-Q. The rant kind of broke me, and maybe some day I’ll post a version of it here, but for now, I want to keep it tucked away in that spot in my mind where the realities of anaphylaxis live.

In the rant, though, I referenced having to wear scarves at the grocery store, and this caught the attention of my workshop peers. They wanted to know more about that experience, and their curiosity piqued my interest, because I’m not really sure what there is to say. You know when you do something that you find to be virtually mundane and someone says, “wow, that’s interesting?” and then you think about it, and you think, “oh, I guess it is interesting.” Like when someone is friends with a celebrity, and to them the celebrity is just their buddy but to the rest of the world, it’s Brad Pitt. (No, I don’t know any of Brad Pitt’s friends).

Me, in one of my scarves.

Me, in one of my scarves.

So, “Wearing Scarves in the Grocery Store: a decidedly curious exploration of what having airborne allergies is like” 

When I was younger, only one of my allergies was airborne, but I don’t think I ever used that word. The allergen was, of course, horseradish. My experience of its airborne-ness was that the one time a year we ate it, on Passover, I would leave the house when my mother would grate it. I was fine with it out and grated, but during the grating, no matter where I was in the house, I would get sick. It was the perfect time to do errands before the Passover Seder. It never once bothered me to the leave the house; I actually looked forward to it as my special break to go do errands and report back on what I saw in the ruckus outside.

When I was 15, I began to experience more airborne allergies. Specifically, to cabbage. I surmise, though there’s no way to verify it, that it was the stench of September 11 that affected my body. There were all sorts of FEMA indications that people with asthma and allergies would have worsened symptoms, so it was unsurprising to me that constant exposure to cole slaw that summer on my teen tour of the West Coast led to mild reactions. Mild meaning headaches, dizziness. Nothing too crazy by my standards, but my standards are, well, not typical.

In college, over exposure in the dining halls made my allergens worsen significantly. My list of airborne allergens grew to include all leafy greens. That was fun. When I went to the grocery store, I would simply avoid the section with the lettuce, and stay on the other side of vegetable aisle. If I was lucky — and I often was, as I tended to grocery shop in college with friends or at home with my mom — I stayed outside of the vegetable aisle all together and hung out in the adjacent aisle reading boxes of things. I didn’t always want to read boxes, and often insisted on trying my luck with the vegetables (“oh, I’ll just stand near the tomatoes…”there’s this thing called denial that’s really important) but my friends and family were really good at protecting me from myself.

And then I moved to LA, and lived alone, and had to grocery shop alone. Which was fine for a while. I could run through the aisles quickly, I could cover my nose and mouth if I ever had to pass the lettuce section. And then, it was 2012, and I started this blog because my allergies got crazy worse, and also kale and horseradish got more en vogue, and grocery shopping became harder.

I would go to the vegetable aisle and break out in hives, or have my throat swell. I would pop Benadryl in the supermarket, but then be all woozy while I shopped. It was totally unproductive. I was incredibly fortunate to have a friend offer to go shopping for me — really, N, you saved my life and my sanity a lot, and I am forever indebted — but sometimes I would forget I needed an ingredient and have to go myself. If it was between February and May, and horseradish was in season, all bets were off. I talked to my doctor about options. He suggested I wear a surgical mask. But since I don’t live in Singapore, I really didn’t want to. I have pride, you know? What was I going to do, go to the Whole Foods in Beverly Hills looking like I was scared of SARS?

But then I thought of scarves. Really, scarves are a genius invention. I often wore scarves to work because it was an easy way to dress up a T-shirt for the office, and I’d be damned if I was going to sit at a desk for 10+ hours in a fancy shirt. But scarves can also double as face masks. So, I would put on a scarf if I was planning to go grocery shopping, and in the vegetable aisle, I would lift the scarf to cover my mouth and nose. Not the chicest look, but less awkward than a surgical mask!

Sometimes, though, if I forgot a scarf, or had a last minute trip, I’d run into trouble. I broke down in tears a few times when I realized I wasn’t wearing a scarf and was really hungry and needed food and couldn’t decide what was a better option: eating less or worse food for dinner or braving the grocery store. How fast could I run in and out of the aisle? Six seconds? You should see me shop, by the way. I’m like the Flash. Lightning fast. In and out and don’t linger.

Now, though, I don’t need the scarf. That’s the biggest thing Xolair has brought to my life. Sure, it’s nice to eat spinach salad (usually I pick out the spinach), and it’s really nice to sit in restaurants, but it’s SO NICE TO GROCERY SHOP WITHOUT A SCARF. It’s nice to be able to go to this tiny little produce market with no windows or non-produce aisles and examine my fruits and vegetables before plopping them in my basket. Even with the scarf, I used to just take from the middle (less likely to cross contaminate) and run. I would still avoid shelves too crowded with allergens — like if eggplants, which are absorbent, were next to broccoli, I wouldn’t buy eggplant. Which was hard, because I can’t really eat that much to begin with, and my diet has to stay varied, and eggplant is really important structurally to my meal plans. That’s past Cindy’s problem, though. With Xolair, and its mitigation of my allergies, I can pop by a store on a scarfless whim and buy an eggplant no matter where its staged on the shelf.

In fact, I haven’t worn most of my scarves in a while. Except on airplanes. I don’t want to be caught with stale air on a flight where someone decides to eat wasabi snacks (now sold in LAX!) and tempt fate. But my grocery scarves are now travel scarves, and who knows…some day they might just be scarves…

And side note: the writing group is a Muslim/Jewish writing group, and it’s really interesting to me that I’ve found ways to incorporate scarves into my wardrobe for a totally non-fashion related reason, and many of my Muslim friends do the same to cover their heads for prayer. While I was thinking, “I can’t leave my house without a scarf today” I’m glad to know I had friends-to-be-made that were doing the same, creating a kind of retroactive kinship.

Advertisements

Food Challenge Round 29: Cindy vs. Onion Powder – The Rematch

Onion powder.

That pesky little food that you don’t think much about until you can’t have it anymore and you realize it’s everywhere.

In people’s cooking. In sauces. In processed foods. In restaurants. In “spices.” Everywhere.

Last time I challenged onion powder, I barely passed. The doctor’s instructions were basically, “If it happens by accident, don’t panic, you won’t die, you’ll just need to take Claritin and lie down for a while.” So in the interest of not wasting time lying down, I avoided onion powder. Until this morning, when I decided it was time. The olive oil gave me courage to re-challenge, and hurrah! I passed! Like, for reals.

I don’t think I’ve felt this good since I retook the SAT and my score jumped 130 points (though I’m ashamed to say I needed to use a calculator to figure that out. Ugh.)

These totally uneventful challenges are super fun. They don’t make for great blog fodder, but I love waking up early, eating breakfast with the doctor (or, you know, a piece of chicken with onion powder and nothing else), and getting on with my day after some friendly chitchat. Way better than the eventful sickness-y ones.

I’m taking a break from challenges for Sukkot, but I’ll resume in October with pasta: the rematch. The thing is, whichever brand of pasta I try, I have to ONLY eat that one. So, dear readers, which pasta brand would you try if you could only ever have that one?

Food Challenge Tally

Cindy: 21

Allergens: 5

Up Next: Pasta

Why Don’t We Believe in Allergies?

Today, I was incredibly moved by a post on the blog A Tale of Anaphylaxis. The author, epipenprincess aka Sydney, is a student who has quite a few anaphylactic allergies. In her latest post, she talks about how after a recent bout of anaphylaxis, some people were talking behind her back about how she was overreacting and making it all up. I was so moved because it reminded me so much of countless experiences I’ve had where people just flat out didn’t believe me. I know that a decade ago, I was a high school student with severe allergies and I made it through just fine, but I’m still in such admiration of Sydney’s bravery to not only handle the so-called “haters” but to do so the day after a reaction, on a blog, and with a positive attitude. That doesn’t sound to me like the sort of person who makes up allergies to get attention, or overreacts to things willy-nilly. Her immune system might overreact, but that’s about it. And for people to be gossiping about her while she’s sick – it’s disgusting. Somehow, I can handle this ridiculousness when it happens to me (most of the time, I do get riled up sometimes), but hearing about it happening to someone else just infuriates me. There’s this fad to not believe in allergies. Allergy agnosticism, if you will.

I get not believing in trolls, or leprechauns, or unicorns (though I sort of believe in unicorns). But allergies? That’s absurd. It’s not a thing to not believe in. Why do we believe in cancer or heart attacks or ADD but not believe in allergies? Because the idea of allergies is so crazy that we don’t want to? We can’t fathom living in a world where something harmless to us is actually a killer to some people – we decide we don’t like that notion – so we assume the person is crazy? If you can’t experience something first hand you don’t think it’s real? I wonder if the logic goes, “I could have a heart attack someday, so that’s real. But I have no history of an allergy, so anaphylaxis is probs fake.” This attitude – which, honestly, I think is pretty illogical – is also dangerous. What if Sydney were younger and not in tune with her body enough to know she needed help? I’ve been there. Thankfully, I never stopped breathing until a couple months ago, but I definitely had times where I didn’t take care of myself properly because I was convinced I was crazy. And why? Because enough people had told me I was crazy.

I remember one high school experience in particular. I was at a weekend seminar for school, and even though I asked the caterer what was in all the food, I mistakenly ate pasta with mushrooms. Once I found out there were mushrooms in the pasta, I kept eating it, because I had never tried mushrooms and thought there was no time like the present (oh, how my doctor would flip out now if he knew). I started feeling hazy and weird, and told my friends I needed help. At the time, I didn’t carry benadryl with me, because I didn’t react that often. There were no real rules about epipens and all that. So, we get the EMT and tell him what’s going on and that I need benadryl. He didn’t have any (also something that wouldn’t happen these days, I hope), and before he sent someone to get some, he “examined” me. At this point, I was freaking out that I wasn’t going to get medicine fast enough. I started having a panic attack, but when your throat is tight and you feel sick and you’re on the lookout for anaphylaxis, a panic attack isn’t the best idea. The EMT told me he thought I was only having a panic attack, and I assured him that panic attack or not, I was having a reaction, and that it was either getting worse or I was indeed panicking, but either way, I needed benadryl stat. Someone eventually ran out and bought some, I took it, and they sent me back to my room. I felt better after the benadryl, and thank God didn’t need epi. I remember another girl from my school who had a lot of allergies came to my room and calmed me down. She said she had heard what happened, and that no matter what anyone said, I knew if I was having an attack, and that if I needed anything, she had allergy meds with her and would help me if I needed to go to the hospital. She wasn’t a good friend of mine, more of an acquaintance classmate, but it meant the world to me that she helped me. I hated that people had been talking about me behind my back – I’m sure, like Sydney’s peers, they were saying not so nice things – but this girl weeded through that to support me. When my school’s professionals were lax, inattentive, not taking me seriously (and making it worse by doing so, as the longer I waited for the benadryl, the more scared I became, hence the panic attack), my friends and this girl had my back. I don’t know if the EMT didn’t believe me, or if the caterer didn’t believe me when I asked him what was in the food, but I know I wasn’t taken seriously, even though it was serious. It’s not a minor incident when you start to lose your eyesight and train of thought because of a food. It’s not as serious as not breathing, but it’s not a walk in the park either.

It’s not just the EMT who didn’t have his act together. The doctor at my college actually told my primary care doctor that she didn’t think, as a general rule, that allergies were real. I often have meals with people who think I’m making it up. People who say that no one outside of America has food allergies (except that Canada and other countries actually have better allergy laws, so I imagine they have citizens who require said laws). The first allergist I saw in LA didn’t believe in my food allergies even while she was testing me, but to her credit, she did believe in my environmental allergies. I feel ridiculous typing that, but she actually said to me, “sometimes people think they have allergies, but really they just have exhaustion.” Oh, so I was exhausted when I was being breastfed, and just never recouped that sleep in 26 years? Then she suggested I had  an ulcer. I do get ulcers from some medicines, and I can tell you, they feel nothing like your throat swelling, hives, loss of vision, and shortness of breath. She’s an allergist and she didn’t believe in my allergies. I can go on and on about people who have questioned me.

That said, there are more believers than non-believers. The way I’m learning to deal with these people who think I’m crazy is by focusing on the people who know I’m not. My friends who encouraged me to see an allergist and get treatment. The people who go out of their way to cook meals I can eat. The people who wash their hands every time they come to see me in case they just ate something I can’t have. The people who have taken me to the hospital. Who have talked me through taking medicine when I need to. Who look at menus when we go out to eat or when they order in and get something that’s easier for me to be around. My current doctor and his team of nurses who continue to educate me and go out of their way to check in on me when I’ve had an attack. And all of you who read this blog.

Sure, the non-believers put my life in jeopardy. They make it hard. There’s no excuse for them. But ultimately, they don’t matter. I know the truth, and the people who are important know the truth. Allergies aren’t something you can believe in or not believe in. They aren’t something to joke about or make fun of or disregard as unimportant. And while it’s exhausting to both have anaphylactic allergies and be brave, I’m going to take a page out of Sydney’s book and brush off the “haters,” and just keep on trucking, safely.

Food Challenge 22: Cindy vs. Green Peppers

This was perhaps the silliest food challenge yet. I expected it to be uneventful because I wanted to start slow on this new post-anaphylaxis round of challenges. (In case you’re wondering why it’s been so long, I had to take a break after the cottonseed oil anaphylaxis and subsequent overreactions, and then Passover got in the way, and then work was too busy for me to take risks).

Anyway. I decided to try green peppers because they are around a lot, in spices and in general. And I used to love them more than any other pepper. And I can eat all the other colors. So I thought, “shoe in!”

Nope.

I mean, maybe nope.

The first time I ever had a green pepper, I said it tasted like spoons. Specifically, the dairy spoons from my parents’ house. This grilled green pepper, of which I had one bite, tasted like old metal pipes in dishwashing liquid.

Green peppers or dishwashing liquid? You decide because my taste buds simply don't know.

Green peppers or dishwashing liquid? You decide because my taste buds simply don’t know.

As I chewed the bite, I started making a horrible face. The doctor took one look at me, said “Oh, the pleasant face,” and handed me a trash can to spit it out before I got sick. The last time I made a face even half as horrible was avocado and we all know how that turned out. (If you don’t, read about it here).

So no green peppers for me. Not a confirmed allergen, but a confirmed disgusting food. For now, at least.

The good news, though, is that when I first started going to this allergist, he told me we’d talk about allergy shots when he thought I was in a better place. We talked about allergy shots, so I must be in a better place! I’m getting scratch-tested on Monday for environmental allergies (anyone have a good playlist to distract me from the horrible pain of that test? Or something fun to read? I read Mindy Kaling’s pilot last time, so I’ll take another pilot recommendation). Depending on how that goes, I’ll start getting shots.

So essentially, I’ll be at the office once a week for shots and once a week for challenges. 2 out of the 4 days its open.

Does that mean I qualify as a Beverly Hills resident?

FOOD CHALLENGE TALLY

Cindy: 14

Allergens: 7

Undecided: 1

Next Up: I’m taking suggestions.

New York Times: Can a Radical New Treatment Save Children With Severe Food Allergies?

This New York Times article was shared with me by a number of friends and family members (thank you, guys!).

It explores a new trial that aims to desensitize children with severe food allergies by feeding them tiny amounts of the allergen daily until they can tolerate a little bit of the allergens. It’s not black and white in terms of how it works, it’s not a quick cure, it doesn’t work for everyone, and it needs to be seriously maintained (eating the allergen every. single. day. in controlled amounts to ensure that you don’t get sensitive again — I don’t know if eating one peanut every day, but not more, is better than never eating a peanut again; both seem stressful and I’m already used to the latter).

It’s an interesting article, and for the kids for whom it works, I couldn’t be happier.

But no, it will not work for me, not yet. Because I am an adult without asthma and with many non-common allergens. So before we all start cheering that there’s a cure — there may be a cure for my future children if they are so afflicted — the science and the research is not there for me, not yet.

Still, the article was incredibly meaningful to me. I cried a few times from certain passages that I’d like to share with you. I don’t cry about my allergies often — I do my best to stay sunny, positive, and excited — but since the cottonseed oil incident, I’ve been quite frustrated with my body and many of the people around me who don’t “get it.” And then I remember how kind it is of my body to have a) survived and b) not been in anaphylactic shock of that nature ever before even though I’m 26, and how kind many of the people in my life are and how much they do get it. Re-enter sunshine, etc…but some things just still hit super close to home:

Food allergies are a peculiar disease, because most of the time the child is not sick — indeed, she may be bursting with health — but is in omnipresent danger. Statistically the chance of dying is slight. Although the number of emergency-room visits for anaphylaxis caused by food has gone up significantly in the past decade — to as many as 90,000 in a year — only 100 to 200 people die (although statistics are difficult to collect because such deaths are often coded as cardiac arrest). Even for a severely allergic child like Tessa, the mortality rate is estimated at roughly 1 in 1,000, because parents of such children tend to be extremely careful. But food allergies amplify a kind of fear every parent experiences — of a child dashing suddenly into the street and, just like that, being gone. Your child is always playing near a precipice that is visible only to you: you may be able to keep her from falling off, but you can never move her away from the edge.

Like a preacher, can I get an AMEN? I am not sick. I do not like being asked “How are you feeling?” on a constant basis. I am feeling fine 99% of the time. If I’m not eating an allergen or around an airborne allergen, or within a week of an anaphylactic attack, I am feeling just like you. I am not sick, I am not getting better every day, I am healthy and robust and alive and I don’t want to be treated like a patient. But I am in omnipresent danger. That’s the best phrase I’ve ever heard to describe this. At any moment, I can become sick. If you eat a salad and I happen by and it’s the wrong moment, I will get sick. I cannot control that. I cannot control where there is food and who is eating it and how my body reacts to it. Unless I live in a bubble – which I will not – I will always be in danger of dying. It’s unlikely, per the statistics above – but it’s a possibility. It’s analogous to driving on a road where you are the only sober driver and everyone else is a drunk driver. You might be a good enough driver to navigate the freeway free-for-all. But you might not be, and every time you get into a car in this drunk driving parallel universe, which is every second of every day, you have a chance of dying and there ain’t nothing you can do about it. I walk along a steep and rocky cliff. And it’s a cliff that is absolutely invisible to everyone around me except the few people who have been around me long enough to get it and care. Because it is invisible, people don’t believe in it, and they sometimes purposely push you to the edge of it (by asking you to touch food, by throwing food at you, by hiding food in your food without telling you to test you) and sometimes they accidentally knock into you and don’t understand why you’ve fallen, and don’t offer the hand to pull you up. (This happens to me a lot. People know that if they eat salad around me I will get sick, and still do it, and then get angry when I am either sick or ask them to stop eating salad). To put it differently: I have an invisible disability. You cannot see my wheelchair. It doesn’t mean I don’t deserve a ramp.

Early one evening, I gave him a nibble of Havarti — which I chose because it somehow struck me as particularly innocent. Immediately he began to fuss and rub his eyes. I stepped into the bathroom to get him some eye drops; when I returned a few seconds later, I almost didn’t recognize him. It was like a moment in a fairy tale when a child is transformed into a beast: his face was swollen and covered with scaly red splotches, and his eyes looked small and sunken. We ripped off his clothes and saw that horrible scales were spreading down his torso. He began to wheeze and gasp for breath. We threw him in the car and drove to the hospital, a few minutes away.

“Next time,” the E.R. doctor told us, “just call 9-1-1.”

Next time? I thought, staring at him with horror. What kind of parents do you think we are? There will never be a next time. But there was: a next time and a time after that and a time after that.

It doesn’t matter how careful you try to be. It doesn’t matter how responsible you try to be. There will always be a next time, and a time after that, and a time after that. My nurse said to me this past Tuesday when I left work in the middle of the day to get some epi because my throat started closing and swelling when I ate my lunch after being exposed to a coworker’s salad: “Next time, let’s give you the junior epi, since you handle that dose better.” I said, “I don’t want a next time.” She said, “Ok, but next time, we’re going to give you the junior epi.” I persisted, “But I don’t want a next time.” (I’m not the world’s most agreeable patient). She replied, “Right, but still, next time, we’re going to give you the junior epi. Actually, next time give it to yourself and then come here. Don’t wait like this again.” I said, “I don’t want this to happen again.” (Okay, maybe I’m downright annoying). She said, “You’re cute. It will.” And left the room. She’s not wrong. I am adorable, and I will have more allergy attacks. Such is my lot in life.

Kieran began treatment last March, the way all the children in the trials begin, by verifying his allergies through a “food challenge,” in which just enough of the food is given to provoke a small reaction. His first challenge was to cashew — a nut we had been told he was allergic to based on blood work but which he had never actually eaten. I knew that Nadeau had done more than a thousand food challenges and rarely had to use an EpiPen, but I still felt sick with dread. He began at one milligram (1/360 of a cashew) and then, an hour later, a larger dose. After a few more doses, I was beginning to wonder if he actually had a cashew allergy. Then he began to cry and flail his arms, as if he had been dropped overboard and was trying to keep from drowning. One by one over the next 20 minutes, the maximum doses of different medications failed to halt the hideous metamorphosis, and they had to use the EpiPen.

Kieran’s food challenges are slightly different than mine because he’s a child, and come on, “Breakfast with Cindy and Dr. E” is it’s own little show, but some things are the same.  Like when I have my food challenges, and everything is going dandy until it’s not. The above bolded sentence is exactly how I responded to avocado at first. Totally fine, maybe some faces here and there, and then boom. “I don’t feel good, I don’t want any, I’m done,” I whined and pushed it away and got some treatment. I felt like I was drowning but like Dory, I just kept swimming, and asking questions, and pushing the damn food away. If, dear readers, you ever see me angrily thrust food away from me the way you would push a person blocking the subway doors, make sure I take Benadryl. I might be in denial, but that is a sure sign I’m having trouble.

But profound change is profoundly unsettling. Tessa lost a defining aspect of her identity. Would she not be special anymore? Would she get less of her mom’s attention? Tessa still wouldn’t eat any of the food that was formerly unsafe at parties or at school. While Tessa told a few close friends about the treatment, she was reluctant to reveal it more widely. When I asked her why, she pursed her lips and studied her nails. Was she afraid that it would make people doubt the severity of her former allergies? “Yeah,” she said without looking up.

I am terrified that someday I will be able to eat lettuce. I am terrified, because I know I can’t eat it now, but if in ten years from now there is an adult cure and I can eat it, people will think I’m a liar. They will think I am mentally ill. I will think I was mentally ill. I will think I wasted years of my life. I know it’s not true, I know things get cured, but this goes back to the invisibility of it all. If you have an invisible disease and it suddenly goes away, and you were the only person to see it in the first instance, why should anyone believe you had it in the first place? How do you pick yourself back up from the loss of an identity? And it’s an identity not by choice, but by mere fact that every time anyone socializes around food with you, you have to mention your allergies to keep from dying, and since people tend to interact around food, when people interact with you that’s what they know. I am “Cindy, the girl with all the allergies.” I had a short period where I wasn’t that, but in certain times I have to be, and now is one of those times. If I were to become “Cindy, the girl who doesn’t have food allergies anymore but who made us not eat salad around her when she did have them,” I could almost hear the eyes rolling, hear the minds thinking “what a c***,” hear the skepticism, and hear the judgement. And I can just hear the little kid who isn’t cured yet getting made fun of because people think he’s lying because they think I was lying. Tessa has a huge weight on her shoulders — she’s the kid who is teaching her peers about food allergies. And now they are getting a mixed message, and among other things, poor Tessa doesn’t want to be responsible for the death of a little kid who wasn’t as lucky in the trial as she was. Because she knows better. And she knows most other people don’t.

The thought that his treatment serves the larger purpose of the trial seems to help him to get through it. In the fall, he was scheduled for a procedure in which a camera is slid down his throat to photograph his stomach to see if medication had been effective. When Justine told him it would have to be postponed because he had a cold, he said, “But I have to do it to help the research for other kids, right?”

Justine was startled: she had never told him that. “I don’t know where he comes from,” she said. “He is very focused on helping other kids through his hardship.”

I’m not in a trial, but I do keep this blog and speak up about my allergies so that the next generation won’t have to. So that the kids who don’t know what allergies are like beyond their peanut-free schools and birthday parties have a resource for handling the less-friendly workplace sphere. So that the kids who aren’t born yet don’t have to watch their parents fight for peanut-free birthday parties. So that people will recognize that this is a reality. I log this and I write this and I’ve made it my identity so that I can survive and get through it but also because I want to help the other kids. Because as much as I like the “specialness” of my doctor saying, “I’ve never seen anyone react that fast, that severely, to that little of an allergen” or “You may have broken a record for the most severe positives on a scratch test in the least amount of time!” it makes me feel alone. And I know I’m not, and I want whoever my compatriots are to know that they aren’t, either. And if I can raise awareness in the meantime, and minimize the invisibility of the cliff, then maybe it will all prove worthwhile.

Happy Allergiversary to Me (Take Two)

I’m big on anniversaries, and today is a big one.

One year ago today, two major life changes happened. The first is that I stopped working in a dirty, rude, horrible office. The second is that I went to my current doctor for allergy testing and found out I was allergic to 46 of the 75 scratch-testable foods.

And so it began.

It’s hard to believe how much I have learned and changed in the last year. I’ve become a better cook and a better eater. I’ve become smarter about my allergies. I’ve learned to accept the reality of the situation and ask for help when I need it. I’ve survived multiple epi-episodes, and overcame a fear of the epipen. I started a crusade against xanthan gum and a started eating pineapple, pears, and cherries. I realized dried fruit is kind of okay. And processed foods have a lot more shit in them than we realize.

I was supposed to have a challenge today to commemorate the occasion, but yesterday at work, I had a terrible airborne reaction and had to get more epi. Apparently, one week after anaphylaxis, I can’t be around lettuce and nuts at the same time and eat within a few hours. Live and learn. That’s what this year has been for me. Living, and learning.

I can’t challenge anything else for another few weeks, and I have to stay careful for the next few days and super careful over Passover when I’ll be far away. But, I got an Auvi-Q! The doctor and nurse decided that the full dose of epi is too much for my body at once, and I react better to the pediactric dose (people who can’t eat are smaller than regular sized adults, I guess), so since I needed a new prescription, they gave me one for the newfangled cell-phone like robot epi injector. I’m obsessed, less scared, and hope I never have to use it.

But the important thing is, I can pinpoint my reactions. I don’t have questions as to “am I allergic to chicken, all I ate was chicken?” which was the case last year. I know what happened. I had cottonseed oil, it fucked with me, and I’m super sensitive. That’s a huge step from last year, and I’m so grateful to be on a road to sorting this all out.

Anyway, here’s a massive tally how far I’ve come so far this year — foods in bold are foods I am NO LONGER allergic to (or testing positive to):

  1. Lettuce
  2. Barley (in the form of beer)
  3. Cacao Bean aka Chocolate
  4. Orange
  5. Green Peppers
  6. Clam
  7. Garlic
  8. Cinnamon
  9. Coffee
  10. Cow’s Milk
  11. Grapefruit
  12. Malt
  13. Olives
  14. Peas
  15. Plums
  16. Soy
  17. Tomato
  18. Wheat
  19. Baker’s Yeast
  20. Walnut
  21. Almond
  22. Avocado
  23. Beef
  24. Blueberry
  25. Buckwheat
  26. Broccoli
  27. Cabbage
  28. Cantaloupe
  29. Cottonseed
  30. Egg Yolk
  31. Flaxseed
  32. Hazelnut
  33. Mushroom
  34. Mustard
  35. Peanut
  36. Pistachio
  37. Pork
  38. Potato
  39. Rice
  40. Sesame (won’t kill me)
  41. Sunflower seed (in oil)
  42. Cashew
  43. Onion (in some forms)
  44. Tuna
  45. Codfish
  46. Salmon

That’s 22 foods back in my diet at least to some degree! That’s incredible. That’s nearly half of the foods back in. And we’ll see how many more get added back in once I complete these challenges.

Thanks to everyone who has been so supportive of me this year, and prior. I spent 25 years of my life thinking that I was possibly crazy and making it all up. And this year, I’ve proven the opposite. And it’s really reassuring to know I’m not crazy, and that there are so many people out there who both want to make sure I don’t die and believe me when I say it’s a possibility. Thank you for encouraging me to go to the doctor and to listen to him and for helping me navigate these crazy dietary changes. More than anything else, I feel blessed. This year taught me just how blessed I am. I wish I could also eat more, but hey. One step at a time.

A Thought on Semantics — Allergy Attack vs. Allergic Reaction

It occurred to me in one of my anaphylaxis-fueled dreams on Wednesday that no one calls what happens when an allergen collides with your body an “allergy attack” anymore. It’s an “allergic reaction.” And yet, I remember it being an “attack” throughout most of my childhood.

And then I started thinking that I now say I have “life-threatening allergies” instead of “potentially fatal allergies,” though I said the latter all the time as a kid (10 points for my vocabulary, huh? I thought I was so cool for having used the word fatal before Sega Genesis’ Mortal Kombat’s “fatalities” were a thing. At least they were a thing in my own head. But I digress).

I sort of feel like people took my allergies way more seriously when I was a kid, and I don’t know if that’s because dying children are scary or if it’s because the words were scarier. From reading a bunch of mom blogs, I get the sense that there are a lot of people out there who don’t really respect kid’s allergies so much. And maybe my parents sheltered me from that negativity, or the internet didn’t really give room for so much bullying or so many opinions — but this isn’t an academic thesis so I’m going to hypothesize that the way we talk about allergies influences the way we respond to them.

Think about it: an allergy attack sounds scary. It sounds like war. Like some outside influence is attacking your body and trying to kill you. That’s pretty damn accurate. An attack sounds painful, taxing, and long-lasting. Because there’s rebuilding that needs to happen after an attack. You don’t just get hit by some bullets and walk away unscathed. You need a few days to wrap your head around what happened and get your strength back and all that. That’s what happens with anaphylaxis. Or any severe allergic episode (shoutout the blog, how clever, right?) for that matter. For instance, while I was better this time after the epi and all that, I still slept more than normal, still had trouble walking distances I would have normally been totally cool with, and found myself completely and utterly exhausted from lifting four 35lb sandbags and other production equipment that’s usually no problem at all. I would say I’m 80% back to full Cindy strength. I look okay, I sound okay, but I need to sit down more than I normally would. I need to take breaks when talking. I was attacked. I’m recovering.

Meanwhile, an allergic reaction sounds like a pansy thing. A reaction is a totally blase occurrence  Like, “When you found out you were nominated for an Oscar, how did you react?” You were happy. And you moved on with your day. “When you saw that YouTube video, how did you react?” You laughed and shared it. And you moved on with your day. A reaction is an immediate feeling that presents itself and then dissipates until the next influencer comes along provoking another reaction. An allergic reaction isn’t something to get worked up about. You ate cottonseed oil, you reacted by not breathing, then you breathed again, move on. I wish.

A reaction is simpler and less full-body than an attack. And I believe some allergic responses are reactions — like when I get hives from touching my laptop that someone borrowed while eating a sandwich and nothing else happen. But some — and I’d argue most if not all severe ones — are attacks. They are full-body hostile takeovers. And maybe if we said so, the idea of little kids not eating peanut butter cupcakes in schools would be easier to stomach. The idea that “if my child gets near peanut butter, she’ll react” sounds like no big deal, and can be countered with “well, if my child doesn’t get her favorite cupcake for her birthday, she’ll react too!” But if you say “if my child gets near peanut butter, she will have an allergy attack,” that packs more of a punch.

Same with “fatal” and “life-threatening.” Life threatening sounds sort of positive. Bear with me here. It includes the word “life.” Life is generally a good thing. Life-threatening implies that you have your life and something may threaten it but it’s still predominant. “Potentially fatal” sounds like “Probably going to die.” In actuality, they mean the same thing. But one sounds scarier. Which means it’s more likely to be taken seriously. When I go to restaurants and say things like “I might die” or “I have potentially fatal food allergies”  the waiter takes me more seriously than if I say “I have severe life-threatening allergies.” It means the same thing, but it elicits different responses.

Just saying.

Emmys! (and some hives)

It’s the superbowl of TV…the Emmy Awards! Only, there’s no typical food for this major American holiday, which is a shame. It’s my turn to host the Emmy’s “party” this year (read: a few friends in sweatpants sitting on a couch watching the show), and I decided to cook what will maybe become an Emmy’s staple menu.

Main Dish:

Homemade pizza — for recipe, see here.

Side:

Fried zucchini — essentially, zucchinni fried with garlic, salt, and pepper.

Dessert:

Strawberry chocolate oat muffins – a twist on my pumpkin oat muffins (vegan! gluten free! nut-free! woo-hoo!) only with pureed strawberry and some chocolate powder instead of pumpkin…or cherries

It all would have been an absolutely SUPERB dinner to accompany a really incredible Emmy show (Homeland! Homeland! Homeland!) but I erupted into hives for a reason I simply can’t understand.

Or maybe I can understand it. Last Monday, on the second night of Rosh Hashana, we had the traditional new fruits to make a blessing for the new year. I am allergic to most fruits, certainly exotic fruits, so I didn’t eat them. No one anticipated an airborne reaction, because there was no horseradish involved. And yet, I broke out into hives for a few days following that meal. My guess right now is that I had an apple that was right next to the fruits, and as with the horseradish incident of Passover, I think the apple absorbed some of the other fruits’ essences. Apples are pretty absorbent — they’re known to absorb most of the pesticides sprayed on them, for instance — and since I had definitely not overdosed on apples and that’s what I was eating when the hives began, I can only imagine they are the culprit. It’s been under a week, and I haven’t been strict about my Benadryl usage, but these sorts of hives can reappear for days. So I’m betting it’s that. Or I overdosed on wheat, with it being in the pizza, and having challah pretty regularly as part of all the ritual meals. Not that I’ve been eating a ton of challah, but I’ve had less wheat over more time than in most weeks (most weeks I eat wheat only on the weekends, in huge amounts. This week, I’ve had bread at many meals, but in small amounts).

Either way, my traditional Emmys meal was slightly marred, but very delicious, so here’s to hoping that next year:

a) I’m closer to winning an Emmy

b) my allergies are in check enough to eat the above foods totally 100% safely

Food Challenge Round 7: Cindy vs. Tahine

This was probably my least favorite food challenge. I challenged tahine (aka tahini), a sesame paste/sauce food that I’ve always hated. Why test something I hate? Well, because it’s in hummus, and I love hummus, and have to challenge that as well. So this was like the pre-req for hummus. Hummus 101 or something.

It was also not my favorite challenge, because I’ve come down with a virus, and mixing that with new foods on a rainy day is just wrong. So while the challenge didn’t go poorly, it didn’t go well, either.

I forced the tahini – homemade, btw, not hard but I can’t recommend recipes for gross foods – down plain, and was mostly fine. Until I had crazy ear burning. It was awful. And then my tongue got a teensy bit bigger, but I was fine, coherent, and only a little whiny. I had to take a Claritin, but it was enough to get me to hummus next week and to prove I can have foods that may have come into contact with sesame (read: challah and bagels).

So, overall, C+. Not bad. Probably would have been happier with the result if I didn’t spend the rest of the day sick, but what can you do? At least I can sort of maybe kind of eat sesame.

In other good news, my friend S is visiting this week, and the last time I saw her was her last night living in LA, the day I got my original skin test results. It’s crazy to think how far I’ve come. When you spend time with a friend and it feels like no time has passed, and then you look back and realize that in that same time period, you went on a crazy diet, on a crazier diet, off the crazy diet, and started a food challenge process — not to mention switched jobs twice — it’s kind of jolting, in a good way. Last time S was here, we baked oatmeal pumpkin muffins because I was having a breakdown about never eating another baked good. Today, I ate homemade pizza made with wheat like it was no big deal. Maybe next time she comes to town I’ll eat pizza from a store?

Nah. Homemade is way better. Recipe to come!

Food Challenge Tally

Cindy – 5

Allergens – 2

Up next: Hummus

This is what an allergic reaction feels like.

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

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

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

BOOM.

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

BOOM.

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

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

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

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

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

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

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

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

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

So BOOM.

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

boom?