Eleanore Vs. A Doom Free Easter

Dearest bunnies,

 

Easter has always been one of my favorite holidays. It’s one of the few holidays that were truly wonderful and peaceful when I was a child in my abusive household. Furthermore, the weather is lovely, there are flowers and candies, and it reminds me of my grandmother. When I was a youngling, we would often go to my grand aunt’s home in the mountains and search for well hidden eggs and presents in their backyard, which was acres of wild forest. These are some of the only good memories I have of my childhood, which often feels like a completely different life from long ago. Unfortunately that goodness never lasted, and as I grew older, my family crumbled.

I sometimes find myself craving to go back to those seemingly perfect Easters. I miss how good life felt on those days, how we forgot about so many of the terrible things we had to suffer through as children. They were moments of true happiness that were fleeting, but not forgotten. Fortunately, this Easter was absolutely wonderful, the best I’ve had since I was extremely young, and I am so pleased that I’m able to say that. Flashback!

I spent the great day of bunnies with my boyfriend and his family. It was relaxing and fun and everything that a holiday weekend should be. We celebrated both his mother’s birthday as well as Easter, so the whole weekend was a party. Saturday night I agreed to help my boyfriend’s mother make overnight french toast for Easter brunch; we even decided to make a tiny pan for me with gluten free bread. I was extremely excited about this since french toast is one of my favorite things in all existence next to my friends, my boyfriend, pizza and puppies (the order tends to vary).

Unfortunately, I ended up being utterly useless because a migraine forced me into bed. My body was overwhelmed with pain, my eyes ached from the light, and my stomach twisted itself into an unhappy, nauseated pretzel. I was seriously bummed that I wouldn’t get to help and felt like a disappointment, but my boyfriend assured me it was alright. We’re both still learning that the number one rule of chronic illness is that when your body says, “Stop! I need rest!” You have no choice but to abide, or suffer repercussions even worse than the current symptoms. I try not to fight it much, but when I do, he kindly reminds me that it isn’t entirely my fault.

The next morning my migraine had moved out of my brain and  I was determined to be up early to help with the rest of Easter brunch preparations. I walked downstairs a little worried that my boyfriend’s mother would be upset with me. Instead, she and a few others immediately asked how I was feeling, genuinely concerned about my well-being. After assuring them that my brain did not explode like I thought it might, she informed me that she had made me my own special pan of french toast, and that she even was sure to wash her hands in between breads. I was simply elated, especially considered she had never cooked for me before.  My plate on my first Easter brunch ended up looking like this:

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And my face ended up looking like this…

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…And everything was fantastic. I told her after brunch that she had successfully made me a safe and delicious meal without any help of mine at all.  We fist bumped, and I was full and happy.

I always make a big deal about when people do these sorts of things for me, and most people don’t understand why. Well, allow me shed some light on why I feel compelled to do so. I have come to realize many people take eating for granted. I don’t mean just in the sense of having food to eat, but also in the sense of being able to eat anything they want, not having to fear fatal allergic reactions or Celiac reactions, and others being able to cook for them without second thought. Considering I have Celiac Disease, 13 food allergies and now GERD, I never expect anyone to cook for me because it just too challenging, not to mention stressful for me because unless I have watched their every move, I can’t be sure they didn’t cross contaminate or add something dangerous. I am by no means a picky eater, rather it is almost always a difference between life and potential death (and people wonder why I’m anxious!)

I am always thrilled when friends and family of friends take the challenge to make me safe food. My friends in Michigan, a few friends back home and now my boyfriend’s family may not fully understand just how much it means to a person such as myself to have people care enough about me to ensure that I can enjoy myself like everyone else in a safe and healthy way. It makes me feel loved, understood, and cared for, knowing that I’m worth the bit of extra thought and preparation to ensure my happiness.

I admit I was slightly anxious that day after I ate since the Celiac reaction sometimes takes a while to fully set in, yet two days later I have no reaction at all. I had the most spectacular doom-free Easter, and I can only hope that my life will be filled with plenty more.

To all the people who put in extra effort into making me feel safe, comfortable and loved, I am immensely grateful for you. I am one blessed bunny.  (O:)3

*nose wiggle wiggle wiggle nose wiggle*

~A Bunny Somewhere, Probably.

 

 

Eleanore Vs. A Duel with her Lunchbox

Dear sentient creatures who require nourishment in various forms,

This morning I had several miniature battles. First was the battle of getting out of bed on a cold day. Each time I thought, “I should really get up,” I burrowed a little deeper into my blanket burrito, because I love to be warm and hate to be cold. I eventually convinced myself that the sooner I leave the warm, the sooner I may return to it. Then there was the battle of how to style my short hair, which I never seem to win. As my pain and sickness began to rush into my body as they do every other morning, I went about the house continuing my morning ritual.

As I put my lunchbox together, I realized something that I believe I have felt for years; I really, really fucking hate having to pack my lunch. In fact, I loathe the action so much I actually did the dishes before packing so that I could put it off a few more minutes. That’s how much I despise having to deal with my lunchbox.

Being the Eleanore that I am, of course, I became obsessed with trying to figure out why I am so loathsome about having to pack my food. I knew it wasn’t because of the food I was gathering; I’ve become a pretty great chef (at least, so I think).Finally I realized the reason I constantly duel with my lunchbox is because most others simply don’t have to, and every time I have to do so, it yet another reminder of how different I truly am.

Not only do I have Celiac disease, but as a symptom of both that autoimmune disease as well as Chronic Fatigue Syndrome, I have 13 other food allergies. About 80% of those allergies can be potentially fatal, as proven by my 16 episodes of anaphylaxis. As you can imagine, having all of that working against me makes it extremely difficult to eat anywhere save for my own home. No matter where I go or for how long, I must always have enough food to get me through whatever the day consists of.

Back home in California there was a magical place known as In-N-Out burger. It was the only place in California, aside from Zest Bakery in Menlo Park, that I was able to eat at. As much as I loved Zest, it was quite far away from my home, and there was only one of them. The entire state was polka dotted with In-N-Out Burgers, which meant that regardless of where I went, at least for a few meals, I could count on them. While eating burgers and fries isn’t the healthiest option in the world, it was nice to have them to rely on if I was too tired or accidentally messed up a meal plan (which I still do more often than I should).

Now that I live in Missouri I am without my beloved double-double. There are a few wonderful bakeries here that cater to gluten free people, but as much as I like to think it’s possible, I can’t survive on cinnamon buns and cupcakes alone. Wait…can I? No. No I can’t, but a girl can dream.

It’s true that it is probably better for both my health and my bank account to bring home made food everywhere I go, but that’s not even the part that troubles me. What I find myself so frustrated at is the fact that as someone with a plethora of chronic illnesses, I don’t have much of a choice. I either bring my own food, don’t eat at all, or take a risk likely to land me in the hospital. Out of those options, clearly, bringing my own food is the safest.

Those who are fortunate enough to not have Celiac Disease, severe food allergies, or other illnesses that restrict their diets so severely often are not aware of how privileged they truly are. An average person can eat whenever and wherever they want and they don’t have to talk to managers or call ahead only to still be left without anything safe to eat. They don’t have to deal with the anxiety of trying something new, wondering if it will ruin their day and leave them hospitalized. Average people also have the luxury of getting food already prepared from any place they wish on days they’re sick, exhausted or have been running around all day. On my worst days, when I can barely walk, if there isn’t food ready from a different day, I either have to cook or beg someone else to for me. There is no way around it. If I don’t cook, I don’t eat. Even hospital food is unsafe for me to eat; for every night I’ve been in the hospital, I’ve had to either starve through it or someone close to me would have to rush to get me a makeshift bunch of meals.

The last few years I have become truly passionate about cooking and I’m thankful that I have been blessed with some of my grandmother’s gift for making wonderful meals. I try not to dwell on the negative and keep looking ahead, but on days such as these when I’m burned out, I can’t help but wish I didn’t have to cook. Nearly every time I explain to someone my restrictions, the first thing they ask is, “what do you miss eating the most?”  I come up with some random answer, but in reality, there isn’t any one food I long for. Rather, it’s the ease and simplicity of being able to go to a restaurant or being able to order food at home that I miss the most.

Now that all the gloom and doom is out of the way, rejoice, for this post isn’t totally hopeless. When I was 15 I began to suffer from anaphylaxis, and because many times the trigger wasn’t clear, I was told to stay away from many foods just in case. When I was 18, my allergen list was up to 13, and I was then diagnosed with Celiac Disease, and my foodie personality said, “peace out!” as it skipped town. My entire world had begun to revolve around food, yet eating was a living nightmare. Everything either had something in it I could not have, and even if I could have it, the anxiety of possibly having a Celiac reaction or an Anaphylactic response terrified me to my core. I was hungry and miserable sitting in a house full of food that I could have none of.

As I began to understand my illnesses more, got medical help and learned more about my special dietary needs as well as how to cook in general, things got better. I began to take pride in my cooking, and when I succeeded in making something new, I was ecstatic, singing and bouncing about my kitchen. Oh, who am I kidding; I still sing and bounce around my kitchen when I make something delicious, even if I’ve made it a thousand times before. I just love food.

Though it took an inhuman amount of patience, slowly but surely I started to enjoy what I was eating again. I went from only eating plain chicken and rice for a year straight to being able to cook beautiful dishes from all sorts of cultures including both of my own. I wouldn’t say I’m good enough to be an Iron Chef or anything, but I’d be lying if I said I wasn’t proud of myself for how far I’ve come.

For those of you newly adapting to life with dietary restrictions of any kind, believe me when I tell you I know how discouraging, scary, and frustrating it can be. While it’s never truly effortless, I promise you, with time and work you will get better at managing your diet and will once again be able to enjoy your meals. While it’s understandable that you may become exasperated, don’t give up for good. There are some Celiacs, much to my horror, who still eat whatever they want. Personally I think this is an incredibly idiotic thing to do, and I don’t know how they do it when the times I’m unlucky enough to eat something with gluten I vomit, am flooded with pain, get a horrible rash all over my legs and am rendered basically useless for the next few days.

It certainly sucks a bit to sit in a restaurant with friends or family and not be able to eat while everyone else is. I have learned that my desire to fit in does not outweigh my desire to remain healthy and not hospitalized. It’s difficult to be different, but once you get the hang of your new life it is highly rewarding and your body will just love you. I never want to experience anaphylaxis or a Celiac reaction again. Ever. If that means having to pack my lunchbox every time I go leave the house for a long period of time, then it is worth it. Maybe it will help if I just get a cuter lunchbox.

Would it be weird for a 26 year old to have a Ninja Turtles lunch box? And are we absolutely sure I can’t live off cinnamon buns and cupcakes?

I won’t settle, settle, settle,
You are never gonna hold me down.
So toxic, you ain’t nothin’ but a prick,
I’m the best thing that never happened to you,
Never, never, never, you are never gonna live this down,
Life’s too short, I can’t fake it anymore,
I’m the best thing that never happened to you.

~Best Thing That Never Happened To You- We Are the In Crowd (I like singing this to foods that I can’t eat).  

 

 

Ellie Vs. Food

Hello darlings,

I am hoping all of you are reading this from safe, snuggly blanket burritos, because it has become apparent that a giant Snow Golem has decided to go crazy and unleash a metric butt load of snow on parts of the United States. And for those of you in other countries that are also dreadfully cold at this time of year, I hope you are well burrito-ed, too. The only thing better than a blanket burrito is eating a real burrito while engulfed in a blanket one.

If you haven’t noticed based on my constant mention of food and food related ideas, I absolutely love food. Unfortunately, food does not love me; therefore, it’s a bit of a complex relationship we share.

My diet growing up was a delicious array. I ate mainly Austrian, German and Hungarian food at home with my Austrian grandparents, not counting Thursdays in which the Red Baron graced us with his pizza presence. Due to the fact that I was raised half Muslim and Half Catholic because my mother converted to Islam in college,her friends were mostly Muslims from all over the world . One of her friends was African-American and cooked a mix of American and Arab dishes, while another couple were Indian and Pakistani, which meant they regularly filled me with samosa and biryani. On Eid al-Fitr, we would have lively celebrations at the city fairgrounds where there was a sea of homemade food. Dishes from many different Arab countries, Chinese food, Malay food, Indian food, and of course, you cannot forget Halaal Soul food. Because of the neighboorhood I lived in, I was also exposed to Vietnamese, Filipino and Mexican cusines as well.  My childhood was horrible in a number of ways, but the food and culture I was surrounded by is by far one of my favorite things about my past. And best of all, I had not one food allergy. Despite my many other illnesses, the only allergies I had were to plants, dust and cats, and I generally tried not to eat any of those.

And then, when I was fifteen, I had my first episode of anaphylactic shock from eating an apple, and I nearly died. Suddenly, I was deathly allergic to apples, pears, and all things birch. 

So, I had to be a little more careful and avoid apples. Not a big deal, right? I wasn’t particularly crushed by the fact that I could not longer eat apples, however I was slightly perturbed that my allergist told me that anaphylactic shock could happen to me again, and I now had to carry around an Epi-Pen. I went approximately eight months without an anaphylactic episode.

And then, it happened again.

And again.

And Again. 

I was consistently being terrorized by my own body. The episodes began to come every 3 to 4 months, and my list of allergens grew as quickly as Jack’s beanstalk. Every anaphylactic episode was worse than the previous, each one coming faster, with more hives, more pain, and more swelling, which meant I had less time to breath with each event. My doctor’s best advice was to adhere to my list of things I could not eat, and hope for the best.

After my high school graduation and my eighteenth birthday, my mother decided that my present for both would be to go to one of my favorite places in California; The Beach Boardwalk in Santa Cruz. One of my closest friends at the time, Marques, went with me, and we had a fantastic time. After a full day of sunshine, salted air, and mildly nauseating rides, we went to a diner to replenish ourselves before driving back down the mountain. At this point, though I had to be more picky, I was still able to eat at any restaurant. I ordered a cheap plain steak with mashed potatoes and veggies, which was something I ate many times at restaurants. I took my first few bites, unaware that those bites would be the catalyst that threw me into my now extremely complicated life.

After the third bite, I felt sick to my stomach, so I politely excused myself and went to the bathroom. I sat in the stall, sick and nauseous, but nothing happened, so I went back to my table. I took another bite of my food, and the moment the food entered my body, my nausea got worse. I began to hear a ringing in my ears, the kind of ringing one often hears in movies and shows right after a bomb goes off. I began to tremble, and felt like my skin was burning. I ran to the bathroom and tried to throw up, and I couldn’t. I scrambled for words to try explain what was happening to my friend and mother, but it was impossible to communicate. I felt as if I had no control over my body whatsoever, was horrifically ill, and absolutely doomed. I thought to myself, “I have just graduated. I just turned 18. And now, I am going to die in Santa Cruz.” I was quickly taken out of the restaurant and put into the back of our car, and as Marques held my hand, I continued to violently shake as we drove the windy road back home.

Not long after this episode it became the norm for me to get sick every time I ate, no matter what I ate. If it wasn’t an episode of severe nausea, tinnitus, and confusion, it would be anaphylaxis. I went to several doctors who were all puzzled, who resorted to testing me for every disease, disorder and syndrome possible. I’m honestly surprised I had any blood left in my body at all. Long story short (my diagnosis story is for another post because it is unfortunately more complex than it should have been), I was diagnosed with severe anemia and malnutrition.

And then I was diagnosed with Celiac Disease.

I find it incredible that if asked I most likely would not be able to tell you what I ate this morning for breakfast. But I remember, with impressive clarity, the last meal I had before my life was turned upside down. My family had gone in the summer to BJ’s Brewery in honor of my grandmother’s birthday. I ate a buffalo chicken sandwich, french fries, and part of my grandmother’s birthday Pazookie. After lunch, I went home and collapsed on the couch, unable to move, because my body was so worn, tired, and sick, that the simple task of going out to eat with my family exhausted me as if I had just completed a triathlon. At 18 years old, I was bone thin, with pale skin, dark, sunken eyes, and the inability to function at even 1/4 the capacity of an average 18 year old. I felt as if I was almost dead, and while this feeling had been titled Celiac Disease, Anemia, and Malnutrition, no one could tell me how to make it stop.

Painstakingly and slowly, once I figured out how to treat my illness and eat right despite my 13 allergies and autoimmune intestinal disease, I got better. I went from having panic attacks at every restaurant my family insisted I try to eat at, to cooking beautiful and fresh homemade meals. Just as I remember the last “old normal” meal I had, I also remember my first “new normal” meal. It was a plate of nachos with tortilla chips, refried beans, soy cheese, lettuce, and olives. At the time I could not eat dairy or tomatoes either, but damn it, those were great fucking nachos, and they were the first meal I had in nearly a year that didn’t threaten my life or cause my body to fall apart. When I was 22, the anaphylaxis finally stopped. In seven years, I had 16 episodes. Each episode could have killed me. I am extremely glad they all failed.

It is true that the main reason we eat should be for sustenance. That would make life much easier than it actually is. In reality, food is not just nourishment. It is how people share love, culture, and experiences together. It’s a reason for everyone to come together. I do not mind the fact that my disease and allergies make it so that I have to cook 99.9% of the food I eat because I cannot eat at most restaurants. It doesn’t bother me that I many times sit in a restaurant surrounded by people eating while I have nothing in front of me, because even a glass of water may contain something that would land me in an Emergency Room.

The main thing that bothers me about my disease, aside from the fact that I have an awful disease to begin with, is that I have to miss out on what it means to experience food. When I moved to Saint Louis, many friends wanted to take me out to experience classic Saint Louis foods, such as Gooey Butter Cake or what many here claim to be mind-blowingly great barbecue. There are also many days that I feel furious at the fact that I do not have the privilege of simply “picking something up” when I get home after a long day, because there is nowhere safe for me to eat outside of my own kitchen. No matter how sick or tired I am, if I don’t have something at home, I have no choice but to cook, for if I do not, the other parts of my disease come out to play, and make me even more ill.

There are many days when I think back to my childhood and how  privileged I was to be surrounded by so many different cultures that came along with so many beautiful kinds of foods. And yes, it makes me sad. However, despite my love for food, it is never worth the consequences that come with dismissing my restrictions. I am often asked if I “cheat” and eat the foods that I am not allowed to have once in a while. Some people with allergies or Celiac Disease can, but I cannot. Most of my allergies are truly life threatening, and I am the most Celiac Celiac one may ever meet, as one of my favorite doctors said. It has been proven that all it takes is 1/64 of a teaspoon of gluten to infect a Celiac. While that may seem impossible, as a Celiac, I can guarantee it really does only take that little amount to send me over the edge. I have eaten something that I had checked a thousand times over, or even made myself, and still ended up with massive purple blisters, tinnitus, nausea, vomiting, and confusion. Despite my affinity for delicious foods, if I have to chose between anaphylaxis, a Celiac reaction, or having to be a bit different than everyone else, I will happily choose the latter, and put on my apron.

While this all may sound like quite the bummer, some truly wonderful qualities have come from the battle between my love of food and my now not so new found dietary restrictions. When I first got sick, I remember my mother telling me soon after my diagnosis, “you better learn how to cook, because I will not be cooking for you.” While my cooking skills may have been cultivated out of desperation rather than passion, I went from cooking whatever would not kill me to not only rekindling my love for food, but intensifying it.

Now, not only am I passionate about what I eat, I am passionate about how I create what I eat. I am getting better at making affordable, safe, and delicious meals with every flip of my spatula. When my transition from allergy-free to allergy-filled started, I was apathetic towards food. I didn’t care anymore, because I felt as if my body betrayed me with every bite I took. I was constantly hungry with no appetite to vanquish the hole in my stomach. No matter what, there are still a few days that I feel nauseous, and I will always have to battle the symptoms of my Celiac Disease along with the rest of my diseases and illnesses. But if I am going to fight, I am happy to say I will at least be eating food that I take pride in making, that is healthy, and that tastes fantastic.

I may not be “normal,” or be able to do many things that most people don’t even give a second thought to, like dining out. But I have become healthier, a fantastic cook, and most importantly,  I can now make spectacular nachos. The proof is in the picture above.

I’m Queen of the world, I bump into things,
I spin around in circles.
And I’m singing, and I’m singing I’m singing,
Why can’t I stay like this?
Dear God, Oh, let me be young.
Let me stay, please. Oh let me stay like this.

~Ida Maria – Queen of the World

 

 

2 Player Mode: Ellie and The Easter Bunny

Just a quick little post to say Happy Easter to my dear readers. I Started this blog just a few weeks ago, and I didn’t think anyone would read it, honestly. But I have gotten a few followers and a few likes and I am so very grateful for every single one of you. Thank you for listening to me, and hearing my story. I hope everyone has a really lovely holiday, and if you don’t celebrate Easter, I hope you have a lovely day in general.

Last night I made a gluten free Easter Cake. Chocolate cake, filled with whip cream and iced with homemade buttercream. The eggs look a little weird though, because due to the whole constant awful pain thing, I was really exhausted and sort of forgot what eggs…looked like. I’m still pretty proud of it though, I think it’s pretty okay. I really need to learn to make fondant…That would make the world so much easier!

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I also made a huge mess in the kitchen. I usually do that, but it’s worth it. (Also, since this was a two layer cake I had to shave the bottom layer and got to eat all the shavings. You know…testing the cake to make sure it isn’t poison. I am a HERO, guys.)

I’m still on my horrible period, and my family is kind of insane and beyond overwhelming which makes most holidays a giant shitstorm, but I am going to try to take it as easy as possible and not lose my mind. But hey, at least there is cake involved. I’ll look forward to that. As well as going to take the leftover cake to my best friend later on. She usually makes everything a little better.

Happy Easter Everybunny! See what I did there? Every…bunny? Hehe. Okay. Sorry.