Ellie Vs. Strength

Dearest Readers,

Last night at 2am I laid in my bed, and I listened intently as the wind sounded off like a wolf pack and as the thunder boomed, shaking my entire complex. At 25 years old and more physically and emotionally fragile than ever, I listened as I watched lightning dance in the darkness, and I felt fear stinging my mind. This morning I realized that the fear I felt was not only from the storm, but rather the storm amplified the fear I already have inside me.

I was raised just as how most people of my generation and every generation before was,  drowned out by the idea that showing emotion was akin to losing your strength. Between the media and our communities we were plagued with such phrases as, “big girls don’t cry,” or “boys don’t cry,” or “stop being so sensitive.” Once my brother told me, “you’re one of the strongest girls I know, but you’re so damn sensitive.” Just in case you couldn’t point out everything wrong with this remark, I made it extra bold. The fact that he was astonished that a girl could have any level of strength at all is equally as irritating as the fact that he, as well as far too many others, believe that my emotional sensitivity negates my strength.

Often times we also find that those who suffer the most, whether from poverty, illness, abuse and/or other, seem to be far stronger than those who have suffered less. The rest of society along with many people within these groups begin to assume that if one suffers, they don’t need to show emotion as much because, “well, their lives are always awful, so they must be used to it.” These people are often seen as inhumanly strong by others, and are then left behind. Or, if you are one of those people who often is seen by those around you as a “feel good machine,” where no matter what you are dealing with in your life, you still somehow manage to help, listen to, and take care of others, the rest of society tends to forget that while you are strong, you are still in the end just a human being.

Here’s a reality check for the human race:

  • Being allowed to show your emotions is not a privilege. It is a human and very basic right.
  • Showing emotions does not by any means weaken strength.
  • Even the strongest people you know still need help, support, and someone to listen to them. No one is exempt of the basic needs of understanding and compassion. This is why The Avengers exist – even superheroes can’t handle life all on their own.

A war veteran who has seen horrific scenes of battle is still allowed to cry when he remembers those images, or cry happily as he watches his daughter marry the love of her life. A doctor who has watched countless people die after her attempts to save their lives is still allowed to be angry and cry after those deaths, despite her best attempts to create armor in hopes that the next death won’t hurt as badly as the one before.

Even those who have suffered a thousand times over and who attempt to create armor to shield themselves from emotional pain are never truly protected from it. Just because others do not see the tears on a person’s face does not mean the person is not crying out from their souls. Likewise, seeing those tears does not make them feeble. The strongest act any person can do, in the end, is allow themselves to feel. 

When I had my hysterectomy (now nearly a year ago) I woke up from my surgery in my hospital room crying frantically. I was terribly confused and for some reason driven manic by the idea that I would be left completely alone. I remember faint glimpses of a nurse holding my hands, her pretty face looking down at me repeating, “I’m here.” I blacked out again and didn’t wake up for hours after.

It wasn’t until a week after my best friend who had been in the room with us told me that when he walked in, he saw the nurse sitting on my bed, holding my hands, crying. “Why was she crying?” I asked, having only a small dreamlike memory of it. “Because you were afraid to be alone and it made her very sad how scared and upset you were,” he replied. His response left me in shock. I made a nurse cry? This woman who has seen human suffering like many can’t even begin to imagine, sat on my hospital bed, holding my hands, and cried with me.

Unless a person works with patients of some kind or is a patient themselves, this may not seem like much. Yet a year later, I am left in awe of this beautiful nurse, who despite her mentally and physically challenging career, instead of creating a thick armor that repressed her true feelings, allowed herself to be left just a little bit open . She cried with me and comforted me, regardless of the facts that she was probably exhausted beyond compare near the end of a 12 hour shift, or that she hardly knew me at all. I may have had over a hundred nurses in my lifetime, many of which have kept their compassion to a minimum for one reason or another. While they were by no means bad nurses, the ones such as my nurse from last year are the ones that I could never possibly forget.

I have cried every day for months now. I have panic attacks that are relentless. Every day I am living my life with a great deal of fear for an even greater amount of reasons. Most of the world tells me this makes me weak, and that I need to be stronger, or should stop being so sensitive. The rest of the world rarely sees me break down, or take my bluntness and transparency regarding my life as incredible strength. While that’s certainly better than the first option, it leaves me dead, because those who believe I have that amazing strength believe that because my life has been a constant battle all my 25 years, that I’m “used to it,” so I don’t require any support or help. And so they keep going, in need of my help constantly, yet never thinking to offer up their own. Both of these are extremely wrong.

I am a remarkably strong human being, as are the others that suffer like me. However, we are not invincible and we are not Marvel’s inhuman characters that you see showcased on silver screens. Even so, my strength does not  mean that I can handle it all on my own, or that  I can handle everyone else’s without breaking into pieces. It also does not mean that when I cry or panic that my strength is lessened. My strength wavers on a daily basis, as I assume most people’s does. But it does not waver because of my tears. It wavers because of the constant battle that I fight every waking moment.

I am not exempt, either way, from needing those I love to reach out to me, support me, help me, or listen to me. In the end, I am just an exhausted, sick girl who is both in dire need of receiving support just as I constantly crave to give it. I can still be strong while being terrified of the storm.

Is it possible for us to brave it together?

Pick you up, let you down, when I wanna go
To a place I can hide.
You know me, I had plans, but they just disappeared
To the back of my mind.

Oh can it be, The voices calling me
They get lost, and out of time
I should’ve seen it glow, but everybody knows
That a broken heart is blind.

~The Black Keys – Little Black Submarines

Ellie Vs. The Workforce

Dearest readers,

I write these words with tears dripping from my eyes. My frustration with this particular situation has become so ridiculous and overbearing that I think it will simply crush me.

As I have said a thousand times before, I was born sick. When I was 15, right as I was nearing the end of high school and was contemplating the upcoming realities of a part-time job, a driver’s license, and college, my health failed me worse than it had ever before. Instead of a part time job, I got Emergency Room visits and hospitalizations. Instead of a license, I got diagnosis after diagnosis, with little understanding. The wings I should have sprouted in my teen years were severed by chronic illness and pain, and my unsupportive family and many apathetic friends had no interest in repairing them. And so, I did not fly, but I fell, and nearly ten years later, I am still falling.

I moved to Saint Louis from my hometown in California nearly eight months ago. What started as random babysitting jobs when I was 21  elevated to a part time nannying job for another family when I was 23. I had my very first real job at 23. The job was not the best, but it was steady income, and I became very close with the girl I looked after. I was grateful, and the money I made from that job, dog-sitting and babysitting, and a third job as a receptionist at my college, are all what allowed me to make my move. for nearly nine months, I worked all three at once, while going to school full time, and despite my heath conditions, I did quite alright; until I ended up collapsing in the hallway of my old house from exhaustion.

After my surgery last summer I had extremely high hopes that my health would improve and I would be able to have a “normal” life. However, in my time in Saint Louis, while I no longer have some of the problems I used to, my arthritis worsened and I was diagnosed with Chronic Fatigue Syndrome as well as a Syrinx, which is a cyst in my spinal chord that upon aggravation creates such intense nerve pain that even a light touch to my arm causes me total agony. These diagnoses would not be so bad on their own, but they’re quite the challenge on top of my other illnesses. To read my list of diagnoses, click the Cheatcode.

Soon after I moved here it became apparent that I could not have a regular full time job. I applied for disability, got denied immediately, then promptly hired a lawyer to fight for an appeal. To my dismay, I found out that it takes two years to get a court hearing just to argue my case, and that doesn’t guarantee that I’ll win at that time. In the meantime, if I work full time, I’ll be disqualified, and while I can work part-time, even then, I could still be denied for it. So, I am too sick to work, but I have to force myself to because I can’t get help, but I can’t work because then I’ll be denied help. When my lawyer first told me this, I burst into tears, and my heart sank past my stomach and into the center of the Earth. “What am I supposed to do?” I asked the lawyer. “It doesn’t make sense at all, but those are the rules. I understand you feel frustrated. All you can do is take care of yourself,” was his somber reply, which gave me no comfort at all.

I must have applied to at least a hundred or more jobs since moving to Saint Louis, both part time and full time. Very few employers responded to me, and the few that I did actually meet face to face with generally ended in blank stares and awkward silences, because they cannot figure out why at 25 years old I have only ever had two jobs, one being a nanny, which many consider to not be a “real job” to begin with. I am rejected again and again as my money slowly drips away with no way to replenish it.

I often wonder why these employers don’t stop to think about why a person my age may not have worked much. They assume it’s because I am uninspired and have no work ethic. Why do they never stop to consider it is because despite wanting to work a normal job more than anything in the goddamn world, I have been incapable most of my teenage and adult life? Furthermore, I have very little skill and qualifications for many jobs, which is obviously the second biggest reason I am denied. But how the actual fuck am I supposed to gain knowledge and skill when no one will give me a chance? Why is it that in order to get a job you must have experience, but you can’t get experience because no job will hire you? I am aware this is a issue for many people, sick or not. But when it’s all this plus being disabled, life is a fucking nightmare.

I don’t want pity. I don’t want sympathy. All I want is a decent chance. I am trying to make my own job freelance writing, making jewelry, and other things that I have at least a sliver of talent in; however, those types of jobs take nurturing, and that nurturing takes a good amount of time that my financial situation does not allow. Ultimately, I want to create my own jobs that I love, and that helps both others and myself; but that dream is only a fragment of my life right now, because the rest is desperately scrambling for a simple job that will pay me enough to survive, but not enough to take away my disability or destroy my body. I feel like that is so much to ask for in the world I live in. Why is that so much to ask for? Why is asking for small breaks to stand, or a chair to occasionally sit in such a massive inconvenience?

I truly hope that our society’s hiring system changes for the better, that disabled people are understood, and that those who for many reasons  never had a chance, are soon able to get their foot in the door. I am not asking to be spoiled or to just be handed a chance. I am not asking for the perfect job to come right to my door. But you know something is terribly wrong when my disability lawyer tells me that my own government does not care about people like me, and his point has been proven to me constantly throughout my life. There is nothing right about the fact that a chronically ill person can’t get health insurance because they don’t qualify for special discounts and can’t afford 450 dollar monthly premiums, or that my dear friend goes to the ER struggling to breath every week because her Medicaid won’t pay for her asthma medication. It’s twisted that despite every application stating that the employers believe in “equal opportunity,” we all know that equality is far from the truth.

I hope that wherever my life leads me, my path will contribute to changing this world for the better. My faith in so much, including myself, is waning. My body is in even more constant pain with no relief because I can’t afford proper treatment anymore. My mind is exhausted, my soul is burned out. Yet through of all that, I will continue to fight in hopes that if I do not find opportunity, I will create it myself.

Wish me luck.

And she said, “I think we’re running out of alcohol, tonight I hate this fucking town.
And all my best friends will be the death of me.
But they won’t ever remember, remember. So please take me far away,
Before I melt into the ground, and all my words get used against me.”
You sad and lonely girl.

Quit crying your eyes out, quit crying your eyes out, and baby come on.
Isn’t there something familiar about me?
The past is only the future with the lights on.
Quit crying your eyes out, baby.

Baby Come On ~ +44

 

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.

Ellie vs. The Allergist and a Sandwich

This morning I went to the allergist to talk about possibly having a C1 Deficiency. Not to my surprise, he wasn’t able to say that I did or did not have it. The C1 test results were low, but not low enough for a clear diagnosis. Basically, I once again got the diagnosis of, “I’m not sure, so let’s do more tests.” This particular doctor was a real sweetheart, though. He was attentive, understanding, and was empathetic to the frustration I felt about not getting a true answer. While it isn’t his fault, it was still wonderful to have someone else to understand why not getting a diagnosis can be just as disappointing as getting one, rather than just telling me to “be happy.” He ordered me more blood tests as well as a chest X-Ray so that we could dig deeper to figure this out. After that, I’m not sure what will be done.

I feel beyond frustrated right now. I wasn’t given a clear diagnosis, so I can’t do much about my pain, but he didn’t say that I didn’t have the disease, so I can’t even breathe a sigh of relief. Schrodinger’s cat is still alive and dead at the same time. I feel like I am floating around in purgatory with a friggin cat in a cardboard box. 

Onto the positive part of the day!

I live quite far from my hospital, so it’s a journey to go see my doctors. However, they’re the best doctors around here, so it is generally worth it. What makes the trip even more worth it is going to Zest Bakery. It’s about 20 miles always from the hospital, but it’s worth every stoplight to get there.

The whole place is gluten free, which is music to my ears, being the most Celiac Celiac to ever Celiac on the planet. They have pasta, pizza, an array of different sandwiches on several different kinds of bread, and my favorite, a shiny glass case of all kinds of fresh baked sweets. I don’t go often due to the fact that it’s far from home and also because it is very hard to resist not eating every single thing they make there, but when I do go, I assume heaven must feel just like this. 

This time I tried to practice a little more self control and only got a few desserts for the week as well as a sandwich. The sandwich is on Foccacia bread. I know right? GLUTEN FREE FOCCACIA BREAD. It’s tasty and soft without falling apart, and deliciously seasoned. If you are a Celiac or gluten free person, you know the struggle is real. Finding something that’s both soft and stable is nearly impossible, but these guys apparently make their baked goods out of magic and unicorn tears instead of wheat to keep it all together. That has to be the secret ingredient. I’m sure of it.

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Look at this handsome sandwich. I’d marry it if it was a person. 

Where I live, we really don’t have a lot of gluten free places. And if a place is gluten free, I still have to worry about my allergies to other foods, so it’s even more difficult for me. Many places advertise that they have gluten free menus, but I’ve often found when talking to managers that having gluten free food and keeping it that way by not cross contaminating is not something they really think about. This presents a huge problem for me. I am so sensitive that even a microscopic crumb is enough to have me vomiting and breaking out in blisters within hours. So here, my only options really are In N Out Burger and Zest Bakery. There is also a place in my city called Gluten Free Gourmet, but I haven’t got the chance to visit them yet.

I think I have freaked out the owners of many gluten free restaurants in California, Missouri and Colorado. Eating at a restaurant is a rarity for me between Celiac and anaphylaxis. So, when I do come across a place that truly is safe for me to eat, I always make sure than I thank the owner (or manager) as well as the waiters. I want the managers, chefs and waiters to know that for people like me, who never feel safe outside of their own kitchen when it comes to dining, it is fantastic and exciting to feel safe somewhere other than home. I realize because of my personality and my anxiety, I sometimes come on a little too strong, and my excitement is off-putting to certain people. Nevertheless, I still make sure that the people in charge of handling my food know how important it is to do it right, and how thankful I am that they do. Not all of the people that work in these kind of restaurants actually have Celiac disease, so sometimes don’t fully grasp what it really is like. The average healthy person can go to a restaurant and get whatever they want without a second thought, and that really is a privilege that people like me do not have. If you or someone close to you works at a place that serves people with special diets, know that it really does mean the world to us, and we are thankful for your work and care. Even if I come off like an overly excited puppy, I hope everyone knows my thanks are always sincere.

I’m in a bit of a weird state of mind today. Days like this that bring me confusing information tend to make me hide inside my head and over think. That really doesn’t help the situation, but I suppose that’s just how I cope. By thinking and eating amazing food made by someone else other than me. (I like the second way of coping so much better). 

I’m a war of head versus heart, and it’s always this way
My head is weak, my heart always speaks
Before I know what it will say

And you can’t find nothing at all
If there was nothing there all along
No you can’t find nothing at all
If there was nothing there all along

-Death Cab For Cutie- Crooked Teeth

Ellie Vs. Her Face

This is going to be a hard one to write. But here we go.

I was born with a jaw deformity. When I was an infant, it wasn’t obvious, mainly because I didn’t have teeth and I had a tiny, chubby face, as babies often do, so I didn’t exactly have a jaw line. Then when I was four, I was sitting in the rocking chair in my grandparent’s living room, talking to someone I can’t exactly remember, and suddenly, I stopped talking. But my mouth stayed open. My jaw had locked, and I couldn’t shut it. That I do remember because I was terrified. I was taken to (I think) a dentist who was able to help me, but warned my family that I would have more dental issues, because something with my jaw was very, very wrong (This is starting to sound a lot like the beginning of Frozen).

When I was about seven, I went into orthodontic treatment. My teeth were all crowded and crooked, and there was very clearly a problem with my jaw. Only my very back teeth touched; two on the top touched two on the bottom. The rest were separated by a massive gap big enough to stick my tongue through it and still have room. I also formed a habit of constantly stretch my jaw every few minutes, otherwise it felt like it was tensing up. It’s much like cracking your knuckles, but cracking your face instead. My siblings told me not to do it because I was embarrassing, and not to smile in pictures because it looked awful. They also started to regularly say I looked like a fish every time I would have to stretch, but as much as I tried, I could not help it. The best I could do was cover my mouth when I did stretch my jaw to pretend I was yawning. But as I got older, I started covering my mouth every time I smiled and laughed, too.

During my orthodontic experience I had all sorts of contraptions that looked like medieval torture devices. I had two in particular I remember more than the rest: One was a retainer permanently put in my upper jaw, meant to stretch it out. Every night my mother had to take a tiny key, put it in the little slot in the center of the contraption, and turn it. I cried and I screamed and it was a nightmare. Another permanent retainer I had was a standard plastic one like many of the ones I have seen other people use, but mine was different due to the three wire spikes at the edge of it, meant to train my tongue to stay back. The spikes would cut into my tongue and make it bleed and sting. Like I said – medieval torture devices. And you thought I was exaggerating!

I dealt with numerous procedures, braces, and other types of treatment until I was 14, when the orthodontist said that the roof of my mouth had collapsed inward and that there was nothing else they could do. So, they called it quits, and so did I. I resolved to be doomed forever and deal with my speech impediment, my constant pain in my jaw, head, and shoulders, my breathing problems, and my struggle to eat and talk on a daily basis. I decided that I was just made wrong, and that I’d have to live with it.

Fast forward to me at 21, when my dentist suggested I have orthognathic surgery to try to fix the deformity. I was excited to think that I might have a chance to become “normal”. Saying I had low self-esteem would be beyond an understatement. Between constantly being made fun of by both my family and people at school, and even bullying myself about it, I generally feel like a science experiment gone wrong. So, I began the journey to find a surgeon. I went to 12 different surgeons, all who were shocked upon seeing how bad my deformity was, and told me they didn’t have either the expertise or time to deal with me. My favorite was one orthodontist, who I went to see on a rainy day. He sat me in a chair, talked to me, and when I opened my mouth, he called his entire clinic to come stare at me like a carnival act. In front of them all, he said happily, “Does your jaw effect your self esteem? Oh, who am I kidding, of course it does.” After his team were done poking me and ogling me, he said frankly, “I honestly wouldn’t have the time to deal with you.” He was the eleventh one I saw. I left his office, feeling like I had just been put through a wood chipper, and I sat in the rain and I called my best friend and I cried…and cried and cried and cried.

Finally, I was sent to UCSF. The orthodontists and surgeons were incredibly kind and understanding. They took me through the whole process of what it would be like to have the surgery. I’d have teeth pulled, braces for a year or two, then surgery which consisted of breaking my jaw and then wiring it shut, then more braces. It was daunting, and didn’t exactly sound like fun, but it felt like a chance at not only looking better, but having less chronic pain. I was getting excited. But that was stupid to do, because there was the problem of all my other health issues and the fact that I’m already in pain every single day with my jaw and neck. They also were unsure of how it would work considering my deformity was one of the worst they’ve seen. So, after months of me waiting, UCSF had a panel of doctors, surgeons, and orthodontists gather together to review my case and some others. A month later, in January, I was called back to UCSF because they had made a final decision.

That decision was not to do anything. And I was mad, and probably cried more.

They decided against not only surgery, but didn’t even want to give me braces for several reasons. One being that I would not be able to handle the increase of pain the entire process would take because of the pain I was already in, and also the fact that while they were sure they could close the gap and fix my facial deformity, the pain would not change, or could even get worse. They also were worried that since my Celiac Disease weakened my bones, my bones wouldn’t be able to handle manipulation and especially being broken and put back together. They said they were sorry, but that the best thing to do was, you guessed it, my least favorite phrase- find a pain management therapist and learn to LIVE WITH IT. *Flips a table*

So now, I do in fact live with the pain and the struggling and the hating of my face. And it sort of sucks. I don’t even look like anyone in my family because of my jaw. I didn’t think I looked like anyone, period.

But then, last night happened.

And I will write about it tomorrow, because I am officially sleepy.

To be continued.

Oh, baby, when you cry,

Your face is momentary,

You hide your looks behind these scars.

In hybrid moments, give me a moment.

Hybrid Moments- The Misfits 

Ellie Vs. Words and What to do With Them

Hello, I’m Ellie. And I have been sick since before I was even a single particle in the universe. I have many different illnesses, all of which have made my life complex, scary, and not at all boring. Some of my illnesses have a name, while others are still a mystery. To get to the point, here’s a handy list. I have *deep breath*:

  • Celiac Disease
  • Many food allergies (which were mainly the cause of)
  • Chronic anaphylactic shock
  • Depression
  • Anxiety
  • Jaw deformation from birth
  • Vasovagal syncope
  • Gilbert’s syndrome
  • Mystery illness in my spine (probably another deformity from birth, so the latest doctor hypothesized)
  • Mystery illness in my abdomen
  • Mystery illness in my reproductive system

So..quite the list there. As you can see, that’s kind of a lot for one girl to deal with. I’ve been a medical anomaly for some time. I am very, very popular…okay. Well. Not really. The only place I have ever been popular in is my local Emergency Room. I…don’t think that’s the right kind of fame. I have even had doctors want to write about me in medical journals…but now I have decided, after 24 years of my life, that the person most deserving of writing about me is, well, me. Because who could possibly know the story better than the one living it, right?

This blog will be a compilation of my adventure through life, of my experiences in the past, and of things I like. When I was younger, I always made a point to say my illness and pain is not all there is to me. And it isn’t, really, I promise. But at the same time, it is a big part of my life, and a part of who I am as a person. And it’s very difficult to have sickness be a big part of my life, because no one knows what to say to someone who is sick. People can talk about relationships, and the news, and the weather…but not many people know what to say when I’ve just come home from the hospital for the third time in a month, and have once again left the doctors scratching their heads. Some days I don’t even know what to say to myself, truthfully. But today, I feel like for once, I do. And so, while I am hoping that this blog will help me, I am hoping even more that this will help people who are like me, who suffer from maybe one illness, or five, or they aren’t even sure what is going on, but know that they feel alone because no one else knows what to say.

Being chronically ill, especially with a plethora of different things, can make one feel like not even a little fish in a big pond, but rather a single raindrop in a deep, endless ocean. Sometimes, it feels like the ocean is just going to gobble me up. And I know I am not the only one that feels that way. But to anyone who is reading this, and who feels like me, I hope you can take solace in the fact that no matter what your story is, we are all humans made out of the same thing that the planets, the stars, and the Earth; we are all made of stardust. I suppose some of the stardust was sick, and that’s what made people like me…but nevertheless, we can still be bright. I hope I can make some people, as well as myself, shine brighter.