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. A Certain Kind of Tomorrow

Hello dear friends.

This one will be a shorter one than normal because I am exhausted beyond belief. I haven’t been sleeping well, mainly due to lots and lots of anxiety attacks about a few different things. I can write about that later. One thing at a time, right?

A while ago I wrote that after suffering a great deal due to constant attacks of pain in my abdomen, and being tested for all kinds of things, it was suggested that I may have a C1 deficiency, also known as Hereditary Angioedema. The disease is pretty scary, and one of the three main reasons I have been having a lot of anxiety attacks lately.

Tomorrow, I get to go to the doctor to see if I have the scary new disease, and if so, what I’m going to have to do to get it under control and improve my life. If I don’t have the disease, that will be good, but also terrible, because while I’ll be happy to not have to add another disease to my list quite yet, I will still not know what is causing my sickness. As I said before, in a lot of ways, I feel like I may not really win either way. However, I am trying to be positive. Currently failing at it, but I truly am trying.

I have had many tomorrows like this in my life. Tomorrows where I may or may not be diagnosed with something, where I have a daunting surgery or procedure that may or may not make me well, or where I go to a new place that may or may not help me. In a lot of ways, my tomorrows are much like the whole Schrodinger’s cat situation. I have two very big possibilities at the same time. Schrodinger’s cat may or may not be alive inside the box after being exposed to poison. Ellie may or may not have a new disease. We don’t know until we go to find out, whether it’s opening a box that has a potentially dead cat instead, or going to the hospital. Until we actually experience what happens, both possibilities exist at once.

I feel that this particular thing is something that everyone can relate to. For me, these tomorrows are mainly regarding my health, but everyone has those events in their lives, whether it is with their health, career, family, passion or anything else, really. We constantly face multiple possibilities at once, and the idea that whichever possibility we choose can change the entire course of our lives is a pretty frightening thing to think, isn’t it?

The only difference in my particular situation (as well as the cat’s, come to think of it) is that unlike most other situations in my life, I don’t actually have a choice to either get a disease or not. However, I still have both possibilities in front of me. In my opinion, that’s really twisted. Life is a real weirdo sometimes. But like I have said before, while I don’t have a choice about whether or not I get the disease, it’s entirely up to me how I react to either news.

I expect that one way or another, I will be disappointed tomorrow. I plan on coping by going to my favorite Gluten Free Bakery and eating all the things.

Well. Here’s to tomorrow. Wish me luck, or an alive cat. Actually please don’t wish me a cat…I’m very allergic. Just go with the luck.

I missed the last bus, I’ll take the next train
I try but you see, it’s hard to explain
I say the right things, but act the wrong way
I like it right here, but I cannot stay
I watch the TV; forget what I’m told
Well, I am too young, and they are too old
The joke is on you, this place is a zoo
“You’re right it’s true”

Hard to Explain – The Strokes

Ellie Vs. Alcohol and Super Mario

Disclaimer: When I use the term regular or normal when speaking about people, in the context of my blog pertaining to health at least, I am referring to people who are generally healthy and do not suffer from chronic illness, pain or any medical conditions. I am well aware that there are many perfectly healthy people who have other problems unrelated to health,but whose problems are equally as hard. I try to never minimize a person’s life or compare them to me, nor do I assume people who do not have my specific problems are perfect or lucky. No one is perfect, whether in health or other. We all have problems that we battle, and we must be kind to each other. I only say regular or normal for lack of a better term to describe those who are in good health. It is not in judgement or disdain, and I hope my dear readers understand this. Now, on with the show.

I have experienced some fairly strange illnesses throughout my life. Nowadays, I normally assume that whenever I am ill, it is definitely some weird Celiac thing, or a problem with my immune system, bones, nerves, or any other part of my body that has enjoyed making me a little more miserable. It doesn’t always occur to me that despite all the weird things my body has done, I still get regular colds, or stomach aches not due to my disease, but due to the fact that I love food a little too much and will gladly attempt to eat my weight in M&Ms, and those are things that even regular people go through.

One of the weirder conditions I have is called Gilbert’s syndrome. I would explain it, but this does a much better job. Mayoclinc.org states:

Gilbert’s syndrome is a common, mild liver condition in which the liver doesn’t properly process a substance called bilirubin. Bilirubin is produced by the breakdown of red blood cells. Gilbert’s syndrome typically is harmless and doesn’t require treatment.

That basically sums it up. Well done, Mayo Clinic! Having Gilbert’s just means that my billirubin blood tests enjoy confusing doctors by fluctuating constantly. The more interesting side effect from having this condition, though, is that I am an ultimate light-weight. Being a pretty large girl at six feet tall and 150 pounds, most people assume I can handle alcohol well. They are all very wrong. My limit is usually three glasses, and I generally only drink wine that is sulfite free. Whenever I drink I always take proper precautions: drinking tons of water, keeping a full stomach, and only ever drink if my health and depression are at their best levels. I never drink when I am ill or if my anxiety and depression are exceptionally high, because not only will it make me feel worse, but I refuse to use alcohol as medicine. I only have it in celebration.

Yesterday was one of my best friend’s 25th birthday. Since I hadn’t had any episodes for three weeks, and I last drank in October, I figured it was safe to honor my darling bestie and drink with her and my friends at a party. As I started drinking I immediately felt the effects of it, feeling warm and fuzzy, becoming a little less reserved and a little more talkative. My friends were elated that I was drinking with them, because since I usually don’t drink and can’t eat any of the same foods they have at parties, they were happy to have me be able to experience something with them (keep in mind, never once have they pressured me to – my friends all know I am pretty sick most of the time and are nothing less than kind and understanding about it).

After only 11/2 glasses of wine, I became not only drunk, but terribly sick, which doesn’t usually happen that quickly. I felt incredibly nauseated, my head was throbbing, and I couldn’t stand up without feeling like I would fall over. It was like being drunk and hungover at the same time, and I was in complete misery. By 10:30p.m I was out of service, huddled up on the couch, wanting desperately to rip out my stomach.

The night carried on and I felt increasingly sick as well as increasingly saddened by the fact that I was practically stuck to the couch, unable to actively socialize or participate in all the fun of the party. My head started to spiral, and I thought of all the horrible reasons this experience with drinking was so bad, while the ones in the past had been so delightful. Was my Celiac Disease acting up due to something I ate that wasn’t safe? Could it be the Hereditary Angioedema causing this? Do I actually have that disease? Will it alter my life forever? Am I going to have an episode right now, right here, in front of all my friends, ruining my bestie’s party because she will have to call an ambulance? The questions were endless and painful, and my brain began to feel nearly as twisted as my stomach had. I couldn’t even go home because I had been drinking. I was trapped, I was sick for an unknown reason, I was scared, and I was slowly morphing into my friends’ new couch.

One of my friends in particular came to sit by me later on, asking if I was okay. Despite him being drunk, he wanted to make sure I was well. Sidenote: this is the first group I have ever had who have not only been kind about my illnesses, but also actively try to help or at least keep an eye out for me. Every other group I have had eventually cast me out because of my situation, or told me I didn’t fit in with them. These people now are like my family and I love them with my entire soul. I began to cry, telling him how my health had exceptionally been bad lately, but was good the last few weeks, how I felt like I was ruining the party, how I was scared of a new disease I might have, how I didn’t want anyone to feel bad for me or pity me, and how I wanted nothing more than to just be a regular 24 year old for one single night, without any complications. He was very sympathetic and consoled me, assuring me that things were not as bad as I felt they were. In my head I disagreed, but having him just care was more than I could really ask for to begin with.

Around 1 a.m the sickness began to subside, and since people were getting tired, more of them came to sit by me. We talked and played Super Mario (horribly hard by the way when drunk. Those little shy guy bastards are so hard to pick up and throw, and I kept falling into black abysses which really pissed me off), and I was feeling a little more normal. But my stomach was still threatening to explode, my head threatening to implode, and my anxieties about why this was all happening to begin with were looming over my head. At one point, one of my other extremely close friends came to talk to me. He had asked when I had eaten last…and that question made a little lightbulb go off in my darkened mind, because I realized I had not eaten a real meal since 4p.m, aside from a few cookies I had before drinking. He informed me that no matter who you are, drinking on an empty stomach is generally a terrible idea. I didn’t realize how long it had been.

Well. Look who fucked up like a regular person.

I know, right? If you’re screaming at your computer screen, or want to throw it out the window, I apologize for being an idiot. No scary diseases or painful attacks this time. It was only me being a distracted 24 year old at a party. I sort of failed at it, but my friends told me that this is something that happens to everyone at some point.They reminded me that we all still had fun during the moments I wasn’t sick. It may sound silly, but being a medical mystery most of my life, hearing that from my friends felt almost reassuring. It made me both extremely happy that for once, I wasn’t any different or any more sick than they were. But at the same time, it saddened me because I realize the other 99% of the time, I am. But for now, I choose to enjoy this 1%. Minus the hangover, of course.

Next time I drink, which probably won’t be until the summer, I will definitely be eating my weight in M&Ms before I start with the wine. What…bad idea?

“So, this is my life. And I want you to know that I am both happy and sad and I’m still trying to figure out how that could be.”

-Perks of Being a Wallflower by Stephen Chbosky

Ellie Vs. Hereditary Ankylosaurus

Dear friends,

a thing has happened.

A few days ago, I wrote about how one of my current challenges is having painful episodes that seemingly come out of nowhere that make me awfully sick, and that I was turned into a lab rat for several weeks only to come back with no answers. Two weeks ago, I had a very minor surgery called an Endoscopy. I don’t really consider it a surgery, but technically it is, so says the surgeon that performed it, and it is never a good idea to argue with the person who is dissecting you, so I will believe her. They really just loaded me with drugs, shoved a camera down my throat to take a peek around, and also did a biopsy where they took a few samples of my different parts for good luck. That all came back normal along with all the other tests.

However, the surgeon, before I was sedated and became silly, gave me a little interview, and after hearing about my current episodes and my past history with anaphylaxis, wanted to test me for something called a C1 Deficiency, which is apparently also called Hereditary Angioedema (Angioedema. Not ankylosaurus, but I have an affinity for dinosaurs, so I decided to dinosaur it. Sorry). I honestly don’t know a whole lot about it at the moment, since I only started researching this morning, but http://www.haea.org states:

Hereditary Angioedema (HAE) is a very rare and potentially life-threatening genetic condition that occurs in about 1 in 10,000 to 1 in 50,000 people. HAE symptoms include episodes of edema (swelling) in various body parts including the hands, feet, face and airway.

In addition, patients often have bouts of excruciating abdominal pain, nausea and vomiting that is caused by swelling in the intestinal wall. Airway swelling is particularly dangerous and can lead to death by asphyxiation.

Yeeah. So…that doesn’t sound very fun. The blood tests for this particular illness came back suggesting that I may in fact have it because the C1 results were all low. I have some of the symptoms, not all of them, but enough to make the doctors worry. This is not a true diagnosis quite yet. The next step is to see an allergist on Wednesday, and I am willing to bet I will probably have a few more tests in my near future. Until then, I am trying not to panic or freak out. If I was an amazing liar, I would say I am completely fine with this, have it under control, and will deal with things as they come. But I am a terrible liar with anxiety, so I will tell you the truth; I am nervous and I am worried and I am very, very scared.

Part of me feels as if this has both good sides and bad sides. But really, it has a lot of bad sides.The only good side is that I may no longer be in medical purgatory, floating about in empty space because no one can figure me out. This disease sounds pretty awful, but at least the mystery may have been solved, at least with this. It’s strange, because part of me hopes that I am diagnosed with it so that I know what I am dealing with and can get it under control, while the other part of me is terrified of this disease and how dreadful it sounds. I am equally terrified that they will say this isn’t what I have, like so many times before, and I’ll be thrown right back into purgatory indefinitely. This particular situation doesn’t really seem to have a winning side, does it?

Sometimes people don’t understand why I get upset when I have tests come back that are normal and am told there is nothing wrong with me. It’s really simple though; you cannot fix what you do not know. The longer I go undiagnosed, the longer I am suffering because no one, not myself or doctors, know how to help me. So I just sit and suffer while I keep being told I am “normal.” But as I said before, there is nothing normal about being this sick. I am always so very scared that I will get diagnosed with something that may either ruin my life or even kill me, while also being scared that I am going to spend the rest of my life as a miserable little mystery until my body finally has enough. Again…no winning side. I’m a little frustrated about it.

Well, for now I know that worrying will not help. My soul doesn’t know that, but my brain does and is currently trying to convince the rest of me. I don’t think it’s going all that well. Whatever happens though, I will fight. I have fought my entire life, and I am nowhere near done yet, so I will fight more. I want to have a healthy life, I want to have a fun life, and I want to become something more than a patient. The universe can always be assured that I can be a stubborn asshole sometimes, and I will be just as stubborn whether I am fighting disease or dinosaurs. I’m really hoping for more dinosaurs than disease. Maybe I can befriend one and ride him to work. I’d name him Michael Ceratops. Sigh…A girl can dream right?

Everything is a lesson
Lesson #1 through infinity
You will never have a greater opportunity to learn to love your enemy than when your enemy is your own red blood
Truce is a word made of velvet
Wear it everywhere you go.

Andrea Gibson- An Insider’s Guide on How to be Sick

Ellie Vs. Her Face – Part Two

*movie announcer voice* Last time, On Sickly Stardust vs. Everything! 

…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.

Aaand now it’s tomorrow. Hello there. I hope whoever is reading this had a good day. My day was kind of terrible, except for the last three hours, which turned completely around leaving me feeling far less stressed and freaked out. The tremor in my left hand (that I’m assuming is a nervous tick) even stopped and I am no longer shaking after four days of it. Woohoo! Anyway. Back to my face.

The night before last I got curious and Googled all of the health issues I have, because while I know they are hereditary, I wanted to find out exactly how hereditary they are. I never had any name for my jaw deformity except, well, calling it deformed. That’s also what all the doctors always called it, so I figured that was the correct term. As it turns out, I was wrong. I found out that having a jaw deformity is called maloclussion (which is kind of mean considering people like me many times have speech impediments, so saying a word like maloclussion is a real challenge). There are different classes of it, and after reading the symptoms it seemed most fitting that I had Class III maloclussion. I nervously clicked the “images” button to see if I was correct. And when I did, I immediately burst into tears.

My whole life I have been made out to be different, to be ugly, and to be the only one of my kind with all the problems that I have, especially the jaw problem. I had never seen anyone look even a little like me, and I don’t look like my parents or siblings, so I was trained to think I was the only one. And yet, on Google, I saw a whole page of people who looked like me. It was such a shock to my system. Honestly, the first thing that comes to mind, now that I’m in a better state of mind, is Tarzan and the song “Strangers Like Me.” It felt a lot like that.

The most shocking part of it all was that I saw people of all different genders and ethnicities. You’d think we’d all look very different, and when it came to our eyes and skin, we did. But our jawlines were all the same. All elongated, and pushed either upward or downward, and when they smiled, they all had big gaps in between their top and bottom rows of teeth. They all said they had pain, they couldn’t smile, that they didn’t look like their relatives. However, we all look like each other. And I truly could not believe it. When I went to the orthgnathic surgeons they showed me pictures of people with different jaw and teeth problems, but I never saw any that looked as severe as mine.

The other part that hit me the hardest in all of this, aside from 1. finding an actual name for this thing that has tortured me my entire life and 2. finding people who also were dealing with it which I didn’t know existed was 3. finding out that many of them were able to successfully have surgeries to fix the jaw, taking away the deformed shape and closing the gap. The process was long and painful, of course. But in the end, they showed the befores and the afters…and the afters, oh, how lit up these people all were with their new jawlines and their new smiles. Those smiles were brighter than fireworks. And I felt so happy for them all, that their pain was lessened, their self-esteem heightened, and that they could finally smile proudly and not have to cover it. There was also a part of me that was smashed in the face by the fact that I would never be an after, because I can’t handle the surgery. I won’t get to smile brighter than fireworks, or see what my face should have looked like. And worst of all, I will always have this pain.

And now for a confession: I got angry and frustrated not only because I was just floored by a huge amount of information at once, but also because I thought to myself, “You’ve had the internet since you were 12, and you never once thought to look this up? What the hell is wrong with you?” I try to do as much research as I can about my health. I try to be cautiously proactive about my health (I say cautiously because to my surprise, not everything on the internet is true! I know, my mind was blown too when I found out). I have researched deformed jaws and orthognathic surgeries to understand other people’s experiences, of course…but I never dug far enough to see all of this. To give it a name, to realize that I am not alone in this. Logically I never truly thought I was the only person on the planet who had this issue, but to actually see it is so much different than just assuming.

I am now realizing though that maybe I should not beat myself up so much about not researching like I have with all of the other illnesses I have. After all the pain, all the failed attempts at fixing my deformity,all the doctors and dentists, all the ridicule and bullying I’ve had to endure because of my deformity, and after having to live with it every single day since I was old enough to remember, it’s actually a no-brainer as to why I didn’t research it a whole lot. It may sound silly, but I think I just simply got sick of hearing about it, and being reminded of it. I am reminded of it every time I move my mouth or look in the mirror. So why use my free time to be reminded of something that I dislike even more? My free time should be used to distract myself by playing Pokemon or watching Bates Motel while wondering how Freddie Highmore went from being this adorable little English boy to a freaking psychopath. You know, using my free time like a normal person.

As much I try to be distracted, or to forget who I am or what my body is like, the truth remains that you cannot run from your problems, that playing Pokemon for six hours straight will not make me healthier, and that when you are a person who is chronically ill and chronically in pain, it is a part of who you are. While there are countless things in life that make it easier to be who I am, and I am grateful for those things, I ultimately have to face and embrace these challenges. If I can’t get rid of my jaw deformity, I am going to have to eventually accept it, along with all my other health problems. They aren’t all there is to me, but they are a part of me, and I’m going to have to be okay with it.

The path towards self acceptance, for me, is a long one. This blog is one of many tools I am using to not only help myself, but others as well to get a little farther down that road. It is going to take me a long time to be nicer to me. I have had horrible, nasty bullies in my life, but the nastiest one has always been myself. I look and feel different than most other people. I have some bigger obstacles than others. But who says that has to mean I can’t be just as beautiful, strong, or as intelligent as others?  One day I hope I can look in a mirror for longer than only a few seconds, smile my big gaping smile, and feel good about it. This may not be the face that I think I was meant for, or that I wanted. But it is my face. So I plan on taking very good care of it, and giving it all the love I can. I think this face deserves it.

Do you care if I don’t know what to say,

Will you sleep tonight, will you think of me?

Will I shake this off, pretend it’s all okay,

That there’s someone out there who feels just like me,

There is.

There is- Boxcar Racer 

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. The Deviant Machine

My body is a deviant machine.

That’s a slightly more poetic and less angry way to say that my body is a fucking bastard, most of the time.

This machine loves to do the opposite of what it is meant to do. Or at least, what people who have studied medicine and anatomy think it is meant to do.  I am the one percent of people that actually get the side effects on the labels of medications, or worse, gets the side effects that haven’t been written down yet. I am the person that makes doctors say, “I don’t know,” a lot more than any person would ever be comfortable with. For the computer also known as my brain, to be placed in this machine causes constant conflict. And sometimes, it just makes me want to scream. This is one of those times.

Lately, I have been even more sick than usual for two months. These last two weeks it has thankfully calmed down. I have had episodes every single night that lasted hours. I woke in the middle of the night sweating, dizzy, nauseous, in pain, confused and convulsing. I screamed for my mother, scared and burning as I try to force myself to throw up whatever demon decided to take refuge in my belly.I kept falling down and hurting myself because I was disoriented for no reason, and could hardly walk down my hallway because it seemed like a maze. I went to doctors constantly who would diagnose me over and over with things that sounded right, until they were wrong. Finally they gave up and just hoped it would eventually subside. My mother panicked, thinking I was pregnant (naturally, that was the first thing we ruled out. Considering my boyfriend currently lives in a different state, that was highly unlikely, but I was tested anyway to be sure). I finally ended up in an ER, shaking and frightened, and still, nothing. I was sent home frustrated and tired and still, sick. After all that, still sick.

In the last few weeks I have had non-stop blood tests, urine tests, MRIs and a minor surgery to try to figure out what my body is doing, why it hates me so much, and what I can do to make it happier. And every single result from every single test came back entirely normal.

This is just one of dozens of examples of what my life has always been like. The cycle goes something like this: I have a problem I’ve always had that has worsened, or something new altogether, I am tested and researched, the doctors come up with nothing, and I am told to just live with my conditions, or that it is normal. But I assure you, it is not normal to constantly live in physical and mental pain. It is not normal to be scared of your own body because you don’t know when it might suddenly decide to throw you into agony. I, nor anyone, should have to “live with it,” because it isn’t living. It’s struggling to keep my head above water, and I absolutely hate that.

My most recent onset of mysterious episodes is the smallest of the problems I have been trying to find answers to, yet it has ended the same way as all the others. When my family and friends are stumped, that’s one thing. When I exhaust doctors of all their options, especially those who are supposed to be some of the best in the country, that’s another thing entirely. A horse of a different color, if you will. A really shitty and disappointing bubblegum colored horse.

Disappointment is a world that I use to describe my life often. I have been disappointed more times than I can count by other people, but even more often by my own body. It seems every time I try to get better, I spend all the time and money I can, and am left empty handed, or with even more pain and questions than before. I try so desperately hard to get better, to be healthy and happy and alright. I try to tell myself constantly that I am okay, and most days, it works, because there are a lot of moments where I really do feel pretty okay. But some days it doesn’t work, because there is always a  part of me that really does not know what is going to happen to me. And I can’t lie – I am scared. I am terrified of the deviant machine.However, I do think admitting fear takes strength. Pretending pain and fear don’t exist, I think, is cowardly.

Through all I go through, I at least try to be an honest person to both myself and others. I believe that thinking positively can change the world and is important, that being realistic is not equivalent to being pessimistic, and that there is always a little more good in the world than bad. But, I also believe that no one should have to lie when they feel horrible or when they are sick or scared. I don’t believe in minimizing one person’s problems because someone else’s is worse. It is unfair to expect a human being to not be affected by all the things we go through, or to hide emotions. Emotions are so incredibly powerful.

So that being said,  I will once again say it. I am scared of the deviant machine. I am scared of not knowing if whether I will get more sick or more healthy as my life goes on. When I was young I wanted so badly to be unique. As I grow older, I now wish nothing more than to be just a healthy, fairly regular person. I have met people who have never been in an ambulance or hospitalized. I want so desperately to be like them. While it may be a lot more boring, I’d be very grateful for less hospital visits.

I am sometimes glad that my mind is as stubborn as my body. That being said, I absolutely refuse to believe that my all of my health conditions are mysteries that are impossible to solve. I will go full on Sherlock Holmes if I have to. I hope that I will be able to live a very long and happy life. Not a perfect one, but a good one, a less painful one. I know it won’t come easily, as it shouldn’t, but that’s all I’ve ever really wanted, ultimately. Just a really good, healthy life. I think I’m on my way. I guess the future will let me know later.

In the midst of a storm searching for shelter,
I came upon one single feather,
A half-hearted wish for something better.
Gracefully cursed,
I thirst.

City and Colour- Thirst 

Ellie Vs. A Tangent About Time

Disclaimer: Every now and then, I may write something that isn’t 100% medical/illness related, but are still about things I find important. This one is half and half. Like a pizza bagel. Okay…well not quite as tasty as a pizza bagel…but you get my point. 

I obsess over time probably more than I should. It isn’t all negative thinking. Most of the time, it’s actually just sort of neutral realizations about how the machine of the universe works, but still these thoughts get stuck in my head for days on end.

Being in and out of hospitals and Emergency Rooms most of my life has caused me to notice time a lot. More than others? I don’t know. I am only me, so I can’t really speak to what the rest of humanity is thinking. However, there is a general saying we hear that states, “time flies when you’re having fun.” According to my experiences, that’s pretty spot on. The days I spend not being sick, and am instead with my friends, going on adventures, and doing things I just generally love go by as quickly as a lightning strike. As I’ve gotten older, though, I’ve begun to notice that even the bad days go by quickly, too. And while some may see this as a negative thing and others may see it as a positive, the fact is that time brings everything to an end eventually. Good things end, yes, but so do the bad things, and personally, that gives me hope.

I have had anaphylactic shock sixteen times in my life. A quick definition so that it doesn’t seem like I’m speaking Klingon: anaphylactic shock is when a person has a life threatening allergic reaction to something. To sum it up, It feels like I’m going insane. It feels like Wolverine is tearing my abdomen apart, my entire face swells, I began to wheeze badly, I break out into hives, and I begin to feel my throat closing up. Feeling myself suffocate is definitely on the list of things I would really rather not experience ever again. In most cases, it takes about twenty minutes for a person to begin to suffocate, which can then send them into a coma, and sadly, if it is too late, they may die. It’s pretty scary stuff. The last episode I had of anaphylaxis was from drinking a glass of water. This is one of the big reasons I have anxiety, but I already wrote about that.

When I had my anaphylactic episodes, I was rushed to a hospital in an ambulance, pumped up with medicines through I.V.s, was relying on an oxygen tank and a nasal cannula to breathe, had people rushing all around me, was stabbed with a steroid shot in my lower side (which hurts like a mothertrucker, by the way), and then was kept for hours at the hospital in awful pain to make sure I wouldn’t relapse before finally, finally, being able to go back home. Long story short, these episodes are terrifying and feel like I’m in hell.

Yet still, that all usually went by pretty fast, and then I was home again and in my own bed instead of a gurney. I always remember that every time I’ve been hospitalized or have been in some terrible experience, it all went by so fast that I find myself thinking back wondering if it all even happened. For a while, I thought it was because since I was dying, it all went by so quickly because of the panic and rushing around me. That really would make a lot of sense. But when I think back to other horrible things I’ve gone through that in the moment felt like they would never end, like having to be awake while I had cortisone shots injected into the tissue of my spine, despite feeling like it would never end while I was in the moment, it still went by quickly when I was done.

Yesterday on my way to work I was stuck in traffic with four helicopters hovering above the freeway, while a continuous line of police cars flew by on the shoulders. I found out on the news a man went on a 70 mile chase, totaled his car, and was held at gun point on the freeway until the cops got him and took him away. There was so much commotion it felt like I was in an action movie. On the way home, driving past the same place on the other side of the freeway, it was quiet, and people were driving along easily like nothing have ever happened. I thought how amazing that was, that after all that had happened, there was nothing on the freeway to even leave a clue about it. The event was over, and the world moved on.

No matter what happens in life, whether it’s something wonderful or something devastating, time moves forward. We truly have no control over that. We are swept along with time, and the days, weeks, and years go by. We aren’t completely helpless, though. We aren’t plankton that have no ability to move on their own (and no ability to steal a certain secret formula, either). We have the ability not only to move freely, but to think freely. Some people may not be able to move as freely as others, but if not, we, as humans, can still create art and discover great mysteries about our world. We can cure diseases and change the lives of people in need. We can get married and start families, travel around the world, but above all we can thrive and learn and experience. Even people like me who have bodies and minds that don’t always do what we constantly wish they would. We can still thrive.

The horrible things will come…whether it’s heartbreak, illness, loss or natural disaster. Being these human things, we can only control those so much. Despite that, we have complete control of how we react to those bad things, and while they will always end, we can chose what sort of ending we want to have. If you get sick, will you let it take your life over and stop you, or will you be a badass and make something of it? I’ve done the first one where I let depression and sickness eat me away, down to my core, for most of my life. And let me tell you, being a badass is so much better. Harder, but definitely better.

So, while time inevitably brings everything to an end, it’s really good news when you’re in a dreadful situation. And when you’re in good situations, enjoy every moment of them. Do remember that while it all goes swiftly by, there’s a lot of things to do, and a lot of questions to answer. Will you just survive through life and float along, or will you thrive and grow and try? When the worst hits, will you let it define your future, or will you give it definition? When time ends, what do you want to look back and see? And most importantly, when are you going to eat that pizza bagel?

The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa the bad things don’t always spoil the good things and make them unimportant.

-The Doctor

Ellie Vs. The Monster Named Anxiety

Right after I wrote my very first blog post last night, I was attacked by this big, ugly monster named Anxiety. I am very familiar with him, and he’s sort of a jerk. Well, sometimes he’s a big, ugly monster. With sharp teeth and a large, snotty nose. Other times, he’s a firefly fluttering nervously about in my dark room keeping me from sleep. Or sometimes he’s a nasty, sharp thorn stuck in the side of my brain, constantly reminding me of the most painful parts of my past. But a lot of times, anxiety is just a towering shadow lingering over me, which I have no choice but to stare up at while I internally scream, cry, and all around freak out about all the “What If”s and “But!”s and “Should I Have Done Something Different?”s and “What is Going to Happen Now?!”s and “Please, make this stop!”s. And then sometimes, someone asks if I am okay. And I usually lie and say, yes. I am completely fine, because if most people knew what I was thinking and how hard I was thinking about it, they’d probably call me crazy. And right after I say that I’m fine, anxiety swallows me whole. Well, I hope I was delicious.

Having anxiety, for me, is weird. That isn’t the most eloquent way to put it, but really, it is. And it is even weirder when it’s paired with extreme compulsive thinking. Everyone at one point or another thinks about the silly things in their past that they have done, or about that really freaky looking bug they saw on television that made them cringe for a moment. And those thoughts bring up emotions and other thoughts. I think that’s just what our brains do, which I understand considering our brains are these massive vaults of memory and information. That’s a big job to have, so naturally from time to time, things are going to escape and wander about. It’s cool brain, we forgive you.

Here’s where it gets weird: While we forgive the brain for once in a while slacking off on the job, there is a difference between thinking about things for a bit of time and moving on, and thinking about one of those things on repeat for three weeks and letting it effect how you eat, sleep, work, and exist. While I have had a complicated life that has in fact been very challenging, and certainly scary at times, I lack any coping mechanisms to deal with the challenges, and this ultimately makes every situation terrifying, whether my life is being legitimately threatened or I am just somewhat uncomfortable. The worst part of it all, though, is that my brain is well aware that I don’t have to be so scared, or that I don’t have to be so troubled by something like just a single image I really did only see for a few seconds. But my brain does it anyway, and I am dragged along for the ride. I can’t fully express how frustrating this process is.  One trigger is all it takes. Whether it’s a single word or an entire city…once I start to go down, I am forever falling.

My anxiety keeps me up at night thinking about if one of my health problems will kill me because they have gotten so close before, or if they will prevent me from starting my life before I ever get the chance. Anxiety brings me to tears constantly because I worry that I may never see the people I love again once I move to a new state this summer. It makes me compulsively check my neck and back for weeks by rubbing my hands over them, because of an image I saw of a creature with what I thought was disgusting skin. Anxiety prevented me from making music in college because I was stunned by the fear of disappointing my mentor as well as all the strangers in my class. All of these thoughts take place in my spirals of thinking. While I lay still in my bed, or quietly clean at my job, my mind is overwhelmingly loud. Like a concert during a thunderstorm, it all eventually gets so loud that all the sounds begin to blur together, and then it just all becomes white noise, and I am left exhausted.

The weirdest part of it all though, is that not always, but sometimes, all it takes to finally calm me down is a few comforting words from my best friend, mentor, or boyfriend, telling me that things are going to be okay. Or a really big hug. Those are good too. Once in a while, the giant monster named Anxiety is brought down to bunny sized by just a few drops of love. He’s still around, but not so ugly. Not everyone understands that, unfortunately. I often have people tell me, “I just told you everything is fine, why do you need to hear it again?” but really, I will always need to be reminded that life will be okay, and that I am cared for. Not because I forget it, but because just hearing it is like being given medicine. I need to often hear that I am safe, because I so often don’t feel I am. I suppose that’s tricky, so I don’t blame the people who don’t quite get it. But to the few people that do, and that are the ones that hit “Player Two Press Start” while I’m battling that big jerk, Anxiety, I am grateful to them beyond articulation. The power of being made to feel comfort and safety should not be underestimated, whether you are someone who helps a person with anxiety, or a person who has it themselves.

I’m sorry I have to say it, but you look like you’re sad

Your smile is gone, I’ve noticed it bad

The cure is, if you let in just a little more love,

I promise you this, a little’s enough.

Angels and Airwaves, A Little’s Enough

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.