Auvi-Q Recall…And What It’s Like To Be Tethered to Medicine

First of all, sorry I haven’t written in forever. I think about it a lot, about how much there is to say, and yet, this part of my journey — the part where Xolair makes life easier but not perfect, where pollen is kicking my ass, where I feel the affects of Prednisone for months and yet am healthier than I’ve ever been — it’s all too confusing for me to focus on.

But then the news comes along, first with an article in the NY Times (I won’t even link to it, it broke my soul too much) about how some woman in Portland is warding off allergies by pre-emptively feeding her kid bamba, a noble pursuit minus the fact that it made me feel like shit for still having allergies (EVEN THOUGH I’VE EATEN MY SHARE OF BAMBA AND THERE ARE ALLERGIES TO THINGS THAT AREN’T PEANUTS AND JUST BC YOUR KIDS ATE BAMBA AND DON’T HAVE ALLERGIES DOESN’T MEAN THEY WOULD HAVE MAYBE NEXT TIME READ THE STUDY MORE CAREFULLY BECAUSE NO ONE CARES ABOUT YOUR PARENTING RULES) and then with the even more devastating news that Auvi-Qs, the epi-pen of the future, has been recalled.

http://www.news.sanofi.us/2015-10-28-Sanofi-US-Issues-Voluntary-Nationwide-Recall-of-Auvi-Q-Due-to-Potential-Inaccurate-Dosage-Delivery

First of all, it’s a bummer that I have to go back to the regular epi-pen, because the one time I needed to use an epi-pen out on the road without the supervision of a doctor AND in an actual life-threatening situation, the Auvi-Q’s voice technology saved me. I was in my office surrounded by coworkers with earphones in, and the thing that perked them up to take me to the hospital was the sound “INJECTION COMPLETE.” I had no breath, no voice to tell them I was in danger, so a regular epi-pen would have stalled the hospital-going process. And given LA traffic and the rule of get to the hospital within about 15 minutes, stalling was not an option.

But more importantly: if you use an Auvi-Q, get an Epi-pen stat

And then the non-PSA reason for this post.

I don’t think of myself as sick. Not usually. And then these things pop up, these things like “tomorrow morning before you even brush your teeth call your doctor to get an epi-pen prescription because your old Auvi-Qs that aren’t recalled expire on 10/31 and the new ones won’t do you much good, and what if you die?” or like earlier this morning, when I went for a walk/jog and had to figure out how to carry my Auvi-Qs and benadryl sans purse. Most people can just take their keys and phone and stick them in one of those runner bands, but I don’t have a runner band for my medicine, and if I need it and I’m without it, that’s life or death.

I’m tethered to this medicine. I’m blessed because there is medicine, and it’s not lost on me that if I had these allergies in the olden days survival of the fittest would have meant I’d be long gone. I’m so grateful there are alternatives like Epi-pen. What a wonderful world of choices and pharmaceutical competition we live in. What medical privilege.

But there’s a harsh reality.

I can die at any moment, not just in the ways everyone else can, but in those ways and then from stray horseradish or whatever other non-poison poisons there are.

Thank you, Sanofi, for the humbling experience.

And hey, do better next time, k? Because it’s late and windy and I want to fade into sleep without confronting the fragility of my human experience.

Oh Hey, I’m in Cosmo

I recently did an interview with Cosmo about food allergies. No, it’s not a list of 37 food allergies to try in bed, though that sounds…interesting.

Check it out here: http://www.cosmopolitan.com/health-fitness/interviews/a38421/what-its-like-to-be-allergic-to-almost-every-food/

Gluten Sensitivity — Not A Real Thing?

So, I already talked about how I hate getting asked if I’m gluten free…but something I didn’t touch on was how irritated I get when people with no medical issues treat their fad diets like medical issues.

I am NOT talking about people with celiac disease. That’s a real medical issue, and having watched my friends with celiac eat gluten, I can tell you, it’s serious.

It’s precisely because of how serious things like celiac and food allergies are that this latest “I feel so much better without gluten” craze pisses me off. Since “going gluten-free” is now a fad diet, people who actually will get seriously ill when exposed to gluten are in EVEN MORE danger. Or, people who are not in any danger from gluten, but are in danger from other things, are thrust into this confusing world that puts our lives at risk.

A few examples of what I’m talking about:

1. When I was in college, I had to see the nutritionist to figure out how to eat in the cafeteria because I was constantly getting sick. The following dialogue ensued:

Cindy: I don’t think I am getting enough vegetables in my diet, because I’m getting sick from vegetables I’m not allergic to from cross contamination.

Nutritionist: Oh, of course you are. The kitchen uses leftovers from one dish and repurposes it the next day. I have a solution. I get a lot of people gluten free pasta.

Cindy: Oh, but I don’t need gluten-free pasta. I can eat regular pasta.

Nutritionist: What about salads? That’s a really good option for gluten-free students.

Cindy: I’m allergic to leafy greens. What are other ways I can eat more vegetables? I can eat tomatoes, peppers, zuchinni — is there a way the kitchen can prepare those without cross contamination?

Nutritonist: You know, I have found that a lot of the students I work with really enjoy this chicken parmigiana dish. It’s great, and we can make it gluten free,  And with a side salad. And that’s a nutritional meal.

Cindy: I keep kosher, and can’t have salad, so I just want to talk about eating more vegetables.

Nutritionist: If you’re not going to need the gluten free pasta, I don’t really know how I can help you. The salad bar has a lot of choices.

And so on…

2. A former colleague decided to try to go gluten-free. I asked him why, and was particularly interested because he was completely insensitive to my food allergies. By that, I mean, he would leave food on my desk, touch my tupperwares while I was eating with his salad hands, have meetings with me while he was eating salad he knew I was airborne allergic to…he was less malicious (I hope) than he was misinformed. And partly because I don’t think he understood the difference between real food issues and diets like his. For instance:

Cindy: Why are you going gluten-free? Have you noticed yourself getting sick?

Colleague: My sister doesn’t eat gluten, her doctor told her not to.

Cindy: But she gets sick, presumably. Do you?

Colleague: I might, how would I know?

Cindy: Do you feel weak? Do you poop more often than normal?

Colleague: No. But gluten is bad for you. Let’s google it. [He does]. See, it says here that whole wheat is better for you than white flour.

Cindy: That’s true, but both have gluten.

Colleague: No, whole wheat is better for you than white flour.

Cindy: Everyone knows that. But whole wheat has gluten.

Colleague: See, it says whole grains in general are much healthier. So I should go gluten-free. You think you know everything about food.

Cindy: I know a lot about food, because I have to think about it constantly. I bake and cook and know all about ingredients because food can kill me. Whole wheat and white flour have gluten. Gluten is a protein found in wheat, rye and barley, and cross contaminated into most oats. It’s in whole grains as much as in non-whole grains.

Colleague: Are you sure? I don’t think so.

Anyway, he decided to go gluten-free for a week. At the end of the week, another colleague asked how it was going.

Colleague who eats gluten: How’s the gluten thing going?

Colleague from above: You know, I haven’t lost weight. I’m eating salads without croutons, but by the end of the day, I’m so hungry, I’ve been eating a bag of pita chips after dinner.

Cindy: So you’re eating gluten.

Colleague from above: I guess so? I mean, it’s hard to just eat salad.

Cindy: There are things you can eat that are gluten-free that aren’t salad.

Colleague: I don’t know, I don’t think so. I haven’t lost any weight at all this week.

His misunderstanding of how food worked may not have impacted me in that moment, but in general, he was flippant about my allergies because he couldn’t see the difference between his gluten-free week and my medical issues. Not eating gluten didn’t fix him (though, of course, he ate gluten) so how could my issues be real?

Not to mention, had he had a real gluten issue, like an allergy or celiac, he wouldn’t have even eaten his salad, as the dressing more than likely had gluten. And the cross contamination of the croutons in other salads would have been an issue.

The more people who go on fake gluten-free diets, the harder it is for people who actually do get sick from gluten to explain their needs coherently. Or for people with other food needs to be heard. I’m not talking about people who are intellectually honest about it — people who say, “I can eat gluten in small amounts, but my doctors have said it affects X condition. I don’t suffer from celiac disease or food allergies, but gluten is a trigger for my X condition.” I’m talking about people who talk about how they gave up gluten and their stomachs are “better” and yet, they sneak gluten in every now and then and “regret it.” People who have self diagnosed a sensitivity to gluten and therefore don’t eat it…except when they do.

You don’t “regret it” when you go to the hospital for an anaphylactic allergy. You thank god that you’re alive. You don’t “regret it” when you’re hunched over your toilet for days except when you’re fast asleep and talking incoherently because you have a celiac flare. You thank god that you’re alive and probably notice some dirt in the grout on your bathroom tiles.

The good news is, a follow-up study to the non-celiac gluten sensitivity study was just conducted, and it turns out, there likely isn’t such a thing. Read the info here. So maybe all this nonsense will stop. And we can move on to other fad diets, like paleo or Atkins or you know,  just eating in moderation.

Let’s leave off with a good laugh with Jimmy Kimmel, who’s totally on my team. He asked people on a gluten free diet what gluten is — and like my former colleague, they had not a clue. It’s kind of hilarious.

 

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.

Allergy Tattoos? Ugh.

A friend shared this article with me, about temporary tattoos for kids with allergies in case they get lost.

http://www.slate.com/blogs/xx_factor/2013/07/18/safetytat_allergy_tattoos_should_kids_with_food_allergies_wear_warning_labels.html

This is ridiculous. First of all, ink isn’t good for people with allergies. The chemicals are bad for your skin and even often have popular allergens. Also, people with allergies are not cows. In case of emergency, there are bracelets. In regular life, kids are smart enough to know better. They just need parents who are straight with them.

I was around five and in day camp when the counselor came around with a tray of some fried food that was unidentifiable. It was either fish sticks or schnitzel, from the looks of it. I asked my counselor, “Is this fish or chicken? I am deathly allergic to fish but if it’s chicken, I’ll take some.” She said, “It’s chicken.” I said, “Are you sure? it seems like fish is a better option and I think we’re not having meat today.” She said, “I know, but they changed their minds and it’s chicken.” I ate a bite and was like”FISH!” and I don’t remember anything else but I know I went home. I imagine I got very sick. Would a tattoo have helped? I doubt it. The counselor was an idiot. I was aware of my allergies. I asked the right questions. Tattoo or no tattoo, children just need responsible adults when they aren’t with their parents, and their parents to train them to ask questions and be smart. No kid WANTS to die. I didn’t WANT to eat fish sticks. I didn’t want to try something that made me get sick. I think what parents don’t get is that food that is appealing to non-allergic people isn’t appealing to allergic people. Yes, the idea of chocolate tempted me as a child. The fear of chocolate kept me away. Knowing how bad it felt to get sick kept me away. Things I was more allergic to, like fish, tasted foul and I spit them out. Spinach tasted like darkness and anger. It didn’t taste good. Even now, when sometimes all I want is a food I’m allergic to, the temptation will never outweigh the risk of death.

Bottom line: responsible adults will be responsible if there are tattoos or not. Irresponsible adults will be irresponsible if there are tattoos or not. People with food allergies will prioritize their own lives over food regardless of whether they have tattoos.

Let’s try to at least encourage people to be intelligent, shall we? And maybe train camp counselors better.

Oh, Dating with Food Allergies…

If I wasn’t half asleep I’d probably expand on this post a little more, but Howaboutwe’s Marla Pachter has it pretty much covered. Love her sense of humor about how awkward it can be to go on dates with a ton of food allergies. Read her article here. It’s hilarious.

Just a few comments, and excuse the potential lack of cohesiveness to this post — I do need to catch up on sleep now that I AM ON MY LAST FEW HOURS OF PREDNISONE after a whirlwind of 12 emotional, insomnia-filled days…

1. You’re not supposed to mention things like weird illnesses or awkward dealbreakers on a first, or even second date. It’s like, everyone has their thing, but you don’t need to broadcast yours to the world like it’s a bright red flag. So if my thing is food allergies, how do I not do that on a first date that’s dinner related? Yes, we can go to drinks or minigolf or the beach but if some guy says “Hey Cindy, I want to take you to dinner” and I say “Howaboutwe go minigolfing instead?” I’m sure he’ll say why, and then it’s like, do I lie? Do I say, “I just prefer minigolfing” and come off all weird and high maintenance? If it goes somewhere, he’ll find out that dinner’s hard, so there’s no use pretending it’s not. I guess I just have to be the girl guys don’t want to take to dinner. I have to give off a minigolfing vibe. Maybe invest in some polo shirts and golf cleats.

2. I have totally suggested a guy order food I was allergic to while on a date so that he would fail when he tried to kiss me. True story. I was all, “yeah, you should order that mushroom pasta, mmmm it sounds so good”  when he was debating between that and the dish I was having and then later I was like, “oh no! so sorry, you had mushrooms, let’s just wave goodbye…” Sometimes, you know at the start of the date where it’s going, and I saw it was going nowhere, and got myself out of what could have otherwise been an awkward head-tilt that’s only good for my amazing masseuse May. So, there’s a plus side to dating with allergies.

And now, for my long awaited sleep…

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.