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

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And Two Years Later…Ruminations on Purim, Food, and Other Stuffs

I started this blog two years ago yesterday. Time flies, huh?

I remember going to the allergist for the first time two years ago, getting my test results, and freaking out that Purim, the Jewish holiday that involves not only a meal but an exchange of food gifts (imagine Halloween + Thanksgiving) was days away, and I didn’t know how to eat. A friend of mine and I went to a high-end kosher restaurant. I ordered off the menu and got mildly sick, which made sense given the state of shock my body was in then. Eating was a chore, figuring out what to eat was hard. I clung to my list of allergies at all times, fearful I’d forget something. Things got worse before they got better, and I resorted to a diet of eating the same foods only three times a week and eating nothing — NOTHING — that was prepared by someone other than me or a friend I could truly trust. No packaged or processed foods. 700-900 calories on a good day.

I don’t know how I did it.

Today, for instance, I ate chips, cheese, chocolate chips, soda, matzah, pasta, and canned beans. All foods that were off limits back then (I also ate other food today, don’t fret). I hate to say and am thrilled to say I took that all for granted. It’s become natural to me, again, to eat certain packaged foods. I’ve learned to count in my head (as the three times a week rule still applies). I don’t have a calendar, I just go with my gut, which usually knows when to stop.

I think about how far I’ve come, and what’s next. On Tuesday, I begin a treatment called Xolair. It’s complicated, and in the interest of not spreading misinformation because I’m a blogger not a doctor, I implore you to visit their website and consult your own physician before trusting me. But basically, there’s a chance Xolair can help mitigate my food allergies. There are risks involved (anaphylaxis among them) and it may not do anything at all, but if it works, I may be able to eat some foods I’m allergic to, or at least cross-contaminate with them.

Two years later…and I’m doing something I didn’t think I could: I’m getting better. Or at least trying to.

But I’m also terrified, I won’t lie. I’m terrified of the following:

1. Anaphylaxis. It’s a risk, and I just don’t want to experience it. I’m already on steroids to cope with pollen allergies, and I just want to get back to normal and sleep better and not have a near-death experience that incapacitates me. I’m trying to remember that this risk of anaphylaxis is okay because I’ll be at the doctor’s office, and that every time I eat food I’m somewhat at risk, especially outside of my own home, especially processed food. Every time I go to the grocery store, I’m at risk. So, why am I more afraid knowing on Tuesday there’s a new kind of risk? If anything, its safer. But I think it’s the same reason I don’t get the flu shot. I usually get fever and flu-like symptoms from vaccines, so the idea of scheduling the flu always seems sillier than taking my chances with the actual thing. This is like that, only flu = anaphylaxis. But, I’ll have medical care. Don’t be scared, Cindy.

2. The treatment not working. What a let down that will be. I can see the light at the end of the tunnel and what if it’s not there? Science will improve, surely, and this isn’t my last chance, but right now my eggs are in this one basket and I am very scared that it’ll be for nothing. Can I live this way forever? Yes. But knowing there’s a teeny tiny chance I don’t have to? I don’t want that chance to be taken away.

3. The treatment working. What is the world like without food allergies? What if I could eat fish? What if I counted at catered events? What if I didn’t have to lug 4 epipens with me everywhere I went? What if I didn’t see kids with sticky fingers and get terrified of them touching me? What if people think that since this treatment worked, allergies aren’t real? What if they go away and come back? My whole paradigm might shift and it sounds extraordinary but it’s also like waking up one day and realizing you don’t speak the same language anymore. That the world you live in is at once the same and totally different. It might be AMAZING. I hope it is. But it’s scary, too. Will I become a binge eater? Will I like kale? More importantly, will I lose my sensitivity to others? I never want to eat nuts on an airplane. But if I can eat like a normal person, will I forget the tricks of the trade that keep my former peers safe? I have a sixth sense now. I’m like a food mentalist, tracking motions of foods and eating behaviours. Will that go away when I don’t have to care? And if so, will that jeopardize the people around me and the advocacy I’ve begun to treat as second nature?

All of these fears have occupied my headspace for months. I have found ways to talk myself out of each one. They even largely contradict each other. But they are swimming in the back of my mind.

Two years ago, I was terrified I’d never adjust to a new diet and a new set of rules and weekly food challenges. Now, I’m given the chance to not only go back to before that — the days of carefully eating out, of having 20 allergies instead of 50 — but to a place I’ve never been. I can do this.

Maybe next Purim, I will be able to partake in any feast. I will be able to give and receive Mishloach Manot baskets of food without fear. I’m lucky — this year and last, my friends and family went above and beyond to include me in the holiday — my parents had a friend bake me food I can eat, my friend hosted a feast I could partake in, and friends gave me unconventional food baskets tailored to my diet in the nicest ways. I feel bad wanting more, hoping that next year it will be easier on me and on them, because I’ve already been given so much and treated with such generosity. And yet…I’m excited.  I’m excited to not have to be an exception or a hindrance or even noticeably different.

These last two years have been rough but I’ve settled in. I’ve learned a lot about strength, food, friendship, family — not in that order — and it feels at once like no time has passed and like I’ve lived this way forever. So whatever’s next…whichever fear is realized…I know I can face it.

So, Are You Gluten-Free?

I am not gluten-free.

First of all, I can eat loads of gluten (loads being a hyperbole. I can have rye, wheat, and barley three times a week each and can’t have spelt yet). I may be cottonseed oil-free, leafy green-free, fish-free, nut-free, pomegranate-free, horseradish-free, plum-free, peach-free, grapefruit-free, cauliflower-free, mushroom-free, gum-free, chickpea-free, etc., but bring on the gluten!

Oh yeah, and second of all, I’m not a food. Or the lack there of.

A cookie can be gluten-free. A burger. A menu option. Even a shampoo. Foods or products that one could suspect contain gluten can, in fact, turn out to be free of gluten.

People, on the other hand, do not contain gluten. Therefore, I’m as gluten-free as the best of them, but I’m also door-free, spoon-free, DVD-free, paper towel-free (is it obvious I’m just naming things I see in my apartment?).

I’m often asked, though, the titular question of this post: “So, are you gluten-free?” I always say, “No, I’m all about gluten, I just can’t have that bread because of x (where x=cottonseed oil; traces of nuts; untrustworthy factory; too-processed; not challenged yet, etc.).

I know it’s not meant to be a hurtful question. And most of the time, I don’t let it become one. I like to pretend I’m impervious to pain. But I’m not. And sometimes, a gnawing thought will come to my mind and I’ll recall the last time someone asked me if I was gluten-free and I just scream to myself, “No, I’m CINDY!”

Cindy.

I am a writer, a leader, an advocate, a doer, a thinker, a consultant, a reader, a TV-fanatic, a dog lover, a student, a teacher, a cook, a dancer, a rapper, a comedian, an ENFJ who teeters on the lines of ENTP. A friend, a daughter, a sister, a granddaughter, an aunt, a niece, a cousin, a person. A Jew, a New Yorker, a Brooklynite, a Brandeisian, a sort-of Angelino, a Trojan.

I’m reminded of an art exhibit I read about recently that I can’t stop thinking about. A group of people were photographed with writing on their body indicating an identifying factor, and the photos were accompanied by a caption indicating what they were not. (http://www.tabletmag.com/scroll/161489/provocative-photo-project-goes-viral-among-orthodox-students#undefined). I often ponder the questions of identity (there’s a whole rabbit hole there, and this isn’t the blog for it. Please see my other blog at www.aliceinwonderland.com for those questions #notreallymyblog), and I think some of that is because my identity often gets taken away from me.

What I mean is, I often first meet people in the context of meals. Food is how we socialize these days — especially in the Jewish community — so the first thing most people learn about me outside of a professional environment is “Cindy is allergic to lots of things (but isn’t gluten-free).” That’s fine, and my life depends on it, but there’s so much more. See above. That’s a partial list. And while I’m “the girl with the many food allergies” I’m not just “the girl with the many food allergies.” And I don’t want to be.

So why keep this blog, you ask? You, meaning anyone who’s ever had the above conversation with me in real life. For a few reasons. One, to update my family and friends on my challenge status. I neglected to mention in my “identity paragraph” (ew) that I’m a social butterfly (BH, that one’s for you, and for everyone else, it’s tongue-in-cheek). I live far away from my family and many friends, and this blog allows me to keep them (you?) updated with my progress without having to make a bunch of phone calls. Two, to keep a log for myself. I could keep a private diary, but the motivation is stronger when I know I’m accountable to an audience. This log has proven helpful as I’ve decided what to challenge, as I’ve looked back on recipes, as I’ve struggled to remember how far I’ve come. Records are important, and this is mine. Three, when I was first experiencing increased symptoms, I turned to Google because I was too scared to talk to most of my friends (though, T, thank you again for being my constant G-chat support and Benedryl enforcer). I found blogs to be helpful resources, but also primarily geared toward mothers or people who had more common allergies. I wanted to be a voice in the space for someone with multiple allergies, in their 20s, who had the allergies forever but saw them get worse. And some of you have reached out to me letting me know I’ve helped you — which means everything. When I see someone’s search query “allergy to horseradish???” I know that I made them feel like they weren’t crazy, something that’s rarely been done for me. In turn, and this is number Four, by seeing people’s queries, by interacting with readers, I feel like I’m not crazy. Someone else is allergic to horseradish. Therefore, I’m not making it up in my own life.

All of the above wins in the cost/benefit analysis of my identity issue. But. That doesn’t mean I want to be Super Allergic Cindy. I just want to be Cindy, whose food allergies are impactful but not any more identifying than someone’s IBS, cancer, insomnia, ADHD, etc. Not that those are all equal, but you get the point. Everyone’s got something. I have this. But that doesn’t mean I am this. Tener and Ser are two different verbs (thank you, Duolingo!)

I don’t need anyone to validate my scope of identity. But I would like it to be invalidated less often. And I know I’m not alone in this. So, instead of asking “Are you gluten-free?” next time someone doesn’t reach for the bread, try one of these two options:

1. Don’t ask anything, and let them not eat bread. Who are you, Marie Antoinette?

2. Ask, “Would you like me to steer clear of you with the bread because of a dietary restriction?”

Or, I guess, 3. “Do you not eat gluten/do you only eat gluten free?

Same goes for all food-related things. If you must know, ask about the food, not the person. But maybe don’t ask, and wait for someone to say something. My friend wrote an excellent piece about this on his new blog about living with Type 1 Diabetes, how we don’t know why other people eat the way they do and shouldn’t make assumptions about their habits. He’s right. And I promise, if my life is in danger, I’ll let you know.

Because I’m Cindy. And among other things, I’m the furthest thing from shy.

This is Cindy.

This is Cindy.

This is food.
This is food.