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