Ellie Vs. The Rest

In high school my friend came up with the extremely silly phrase, “I falafel,” to say he felt awful.

Well guys, I falafel (sidenote: yum…falafel).

When you’re constantly not okay, especially due to the fact that you have approximately one metric butt load of chronic illnesses as well as some others that just like to pop up and be dreadful whenever they wish, it gets really hard to remember that there is actually more than just pain and sickness to your story. I am sure people who have either been through long term or even short term illness understand that it can be easy to lose yourself in all the doctors, medications and machines.

The last few years I have always been burdened by the thought that if it weren’t for all my medical mysteries and close calls, I wouldn’t be a very interesting person. I felt like that was all that made me different….that I am a person that just always hurts. And that is a very troubling thought. I never wanted to be known as the “sick” girl, or the girl who is “allergic to everything,” or be a “downer.” However, even when I tried to hide anything even slightly related to illness or sadness, I still somehow managed to end up being one or all of those things. Hrmmph.

Nearly two years ago I was fortunate enough to take a trip to Florida with my mother to visit DisneyWorld in celebration of her finally getting her master’s degree. On the plane from Arizona to Florida, I happened to end up being seated not next to my mother, but next to a wonderful redheaded man near the same age as me. During the 4 1/2 hour flight, we ended up becoming what we like to call, “vacation best friends.”

We talked about food, music, superheroes, art, food, comics, music, and food, and it was fantastic. But of course, at one point it came out that I was chronically ill, which was why sitting that long was quite the nightmare, and also why there were so many things I could not eat for fear of anaphylaxis. He was curious, and having his own experiences with illness in his family, started a conversation with me about all that, too. It was without a doubt the best flight of my life.

At one point, several hours into our conversation, I told my new best friend that I felt that if it weren’t for my poor health, I would most likely be a very boring person. His reply was something that I could never possibly forget. He said, very loudly might I add, “That’s BULLSHIT. You mean to tell me, that this conversation we’ve been having for hours about art and food and music wouldn’t have happened if you weren’t sick all the time? I don’t fucking think so. There’s a lot to you.” My heart glowed.

Lately, this has been even harder than usual to remember. So, to not only help myself, but also so that my dear readers can know a little more about me aside from the fact that I usually falafel, here are a few quick facts about the rest of me.

  1. I fucking love dinosaurs. I don’t know why, I don’t know what started it, but since I was a child, I have absolutely loved dinosaurs. They are just so. Cool.
  2. I recently just graduated with two AA degrees after five years in junior college. One is in Communications, while the other is in Liberal Studies with an Emphasis in Art. The particular form of art is music. I earned the second degree on accident, but I am very glad I did.
  3. I enjoy cooking, and I love baking even more so. I’m not Food Network material or anything quite yet, but people usually enjoy the food I make. That’s a good sign, right?
  4. I have idolized Lucille Ball and Elizabeth Montgomery for as long as I can remember. I grew up watching all those wonderful old shows like I Love Lucy, Bewitched, The Dick Van Dyke Show, and so on. Side note…my first crush was definitely on Dick Van Dyke. I mean…have you seen him back then? Hot damn. He’d make a dragon wanna retire, man.
  5. I absolutely love graphic novels. I like comic books as well, but I enjoy graphic novels more because they end at some point, and I find comfort and satisfaction in endings.
  6. My favorite T.V. Shows are, aside from Bewitched and I Love Lucy as mentioned before, Chuck, Pushing Daisies, Doctor Who, Scrubs, Fringe, Video Game High School, and That 70’s Show. If you have not seen all these, you need to. Now.
  7. I love music, obviously. I used to play bass guitar and piano, but haven’t in years for a number of reasons. I would like to start up again, though.
  8. I also love fashion, particularly vintage and retro clothing. I’m also the queen of bargain shopping considering I’ve never had much money, but you’d be surprised what you can find for next to nothing! I’m pretty sure I thrift better than Macklemore. I Mackle…more. That was stupid. Sorry. Anyway.
  9. I was in acting from the time I was 5 to the time I was 18. Not like, professionally, but still. Most of my life, I wanted to be an actress, and then I suddenly burned out. It was scary when I did, because all I had ever done my entire life was write for theater, act, and obsess over music. I ended up loving my Communications major after a little searching, and I have never regretted switching.
  10. I HATE mirrors, the sound of ticking clocks, things that flutter (they make me nervous), the smell of coffee, and the word “pissy.” Writing this actually just made me cringe.
  11. My favorite sound in the world is the sound of a ring hitting a dish or pan, because it reminds me of my grandmother, who is still my favorite person in the world. She wears her wedding ring as well as my grandfather’s, because he is always working with his hands and never could really wear it. She always says it helps with her arthritis…but I think she is just being a romantic. I mean, she’s done it for nearly 60 years.
  12. I used to be heavily addicted to video games. I still love them, but am much less caught up in them.
  13. My favorite color is all of them. But especially Turquoise. But mainly all of them.
  14. I was born on July 4th, also known as American Independence Day. I was supposed to be born in June, but my stubborn newborn ass just wanted to wait for a minor holiday, I guess. But hey, fireworks!
  15. I have a partial photographic memory. It mainly works on things I either absolutely love, or things that absolutely terrify me. I found this out when I was 20 and thought I was losing my mind, because I couldn’t sleep for days after being in the Denver airport. One mural they had there was particularly terrifying to me, and I kept seeing it in my mind, and it scared me over and over. I told my mother that I thought there was something seriously wrong with me. She said there wasn’t, and instead that I simply just have the ability to remember certain things to very great detail and have the images stuck in my head. I’m not sure if that is actually a true photographic memory, but that’s the best way to describe it. It’s just odd.

So, there you have it. Fifteen pieces of evidence that prove that there is more to me then just pain. If anyone reading this is constantly sick, or in pain, I am sinicerely sorry for your suffering. But remember…you are more than just your illness. You are a person, a puzzle comprised of passions, dislikes, likes, memories, goals, and ideas. If you are having trouble remembering them, make a list. You deserve to be reminded that you are great and that you are important, and not just because you need medical attention. Even if you don’t feel like you are, you are.

I’m sure of it.

Joke me something awful just like kisses on the necks of best friends,

We’re the kids who feel like dead ends.

And I want to be known for my hits, not just my misses.

I took a shot, and didn’t even come close, to trust and love, and hope.

And the poets are just, kids who didn’t make it.

And never had it at all.

And the record won’t stop skipping

And the lies just won’t stop slipping.

And besides, my reputation’s on the line.

We can fake it for the airwaves, force our smiles, baby, half-dead

From comparing myself to everyone else around me.

-I’ve Got a Dark Alley and a Bad Idea that Says You Should Shut Your Mouth – Fall Out Boy

Ellie Vs. A Ticking Clock

Dear those looking at this with your eyeballs, (and ones looking at this with something else, I don’t discriminate),

My life has had quite a few technical difficulties this week, and these difficulties have been, well…difficult. It’s all left me exhausted, shaky and anxious, as well has more depressed than usual. When my depression takes over, it’s hard to do anything, including write, but I am trying to not let the little cloud over my brain dictate my life. So, this morning, while the cloud was saying, “Stay in bed, hide under the blankets,” my brain said, “No. Get up, do things, and it will make you feel good.” So here I am, doing things.

In the grand scheme of my situation, my life has actually got two really wonderful, life changing things coming up. However, the journey getting me to the wonderful part is terribly hard, and one is not guaranteed…though I guess that’s how life generally works out, isn’t it?

As I have said before, I desperately need a hysterectomy, because my periods drag me into hell and show no mercy. The pain I deal with is excruciating, to ridiculous levels. I can’t work, eat, walk, or function when they come; and they come whenever they wish, following no pattern at all. My periods have left me terrified of my own body, and that makes my anxiety worse than it already is. I have good insurance right now, all my doctors support it, and my friends and family do as well…except for my mother. Since I live with her, I am apparently also owned by her, and she decided early on that having a hysterectomy was not my choice and that I was not allowed to do it, even though I’d pay for it. I thought of just having it anyway, but recovering at home would be a nightmare, and she would make me miserable. So, I was stuck.

Then, the other day, I one of my friends gave me a grand miracle.

My friend is just a bit older than I am. Both she and her mother also had hysterectomies. After talking to her in depth about it, she offered to allow me to have the surgery, then recover in her spare bedroom that she normally rents out to people who travel through our city. I was so stunned by her kindness, and because of my independent (or stubborn, as most people like to say) attitude, my first reaction was to refuse. There’s no way I could ask for something so huge, and I have very little to give back. However, it clicked in my head that at this moment, I truly need help. I am chronically ill, I don’t have a lot of money, and if I were to not take this chance that my dear friend gifted me, I would have to wait much longer before I could get a different insurance and the money to pay for the surgery, since I am moving out of state. So, I told the stubborn part of me to shut the hell up, and I said yes.

I went to the doctor yesterday, and she was so elated that I had been given this chance. I have so many health problems, crossing just one off the list would give me so much more freedom. The problem, however, lay in my age. Because I am 24, and not over 40, this particular doctor is not allowed to perform the surgery. Instead, I would have to go to an academic hospital, and have them do it. This makes no sense to me, and frankly makes me extremely angry, being treated like I don’t have the power to dictate what happens to my own body, but if that is what I have to do, then I will do it. So, I called the other hospital, and after them running me around a bit, I finally got an appointment…in two weeks.

Normally I would not complain, since that is not too bad of a wait, but right now, it’s Ellie vs. A Ticking Clock. I am due to move in only four months, and I want so badly to have the surgery before I go, so that I can start my new life, rather than starting up then having to halt life once again to have a surgery. While I could move at a later date, I am not exactly happy where I live, and the thought of staying longer makes me cringe a little. As my boyfriend said, I have two very hard things to choose between. Stay in a place longer where I am miserable, but have a surgery that can change my life for the better, or move and be happier at home, but still be sick?

There is a chance that I will actually be able to have the surgery and still move on time, but I won’t know until two weeks from now, so I am currently just spiraling out of control and being an anxious little thing. I have to get everything lined up to work out; my friend’s place needs to be available, I have to be able to afford the surgery, it has to be enough time for me to recover before I get on a plane to Missouri, I have to pack and get a car mover at the right time, I have to put my one month’s notice in at work at the right time, and I have to make it so that I am well enough to go to my grandmother’s 90th birthday party while hiding the fact that I had surgery from my family. Then go to Missouri and start a whole new life. I’m…overwhelmed.

It’s not impossible for this to all work out, and I am really, really, REALLY hoping it does. I need to move, but I also need to be healthier. My superstition is making me nervous that just talking about it may jynx it. I think I can honestly say I have never wanted two things more badly in my entire life. Part of me is also extremely sad that I have to face such a big thing without the support of my family. I do feel alone in this, but I do have amazing friends and a boyfriend who, though is far away, is truly trying his best to be there for me as he can, while still trying to maintain his life and find us an apartment. I get pretty angry about the fact that the people who want to be there for me can’t be, and the people who can be there for me won’t be, due to their own choice. But, maybe instead of getting angry, I should be grateful for those who are supporting me. I like those people quite a lot.

Often in my life, things don’t work out how they should. Those negative parts of life are always so much easier to remember than all the times things do work out. But despite the negative being louder, my life hasn’t been total disappointment. There have been some situations that have worked out, and worked out well.  For now, I will try to be patient, be positive, and be hopeful. I really, truly hope this is one of the things that does work out well.

Here’s to my future, and as always, to yours.

There’s the strangest excitement today
If you’re awake, then you’re welcome to hear
I got a gift and it blew me a way
From the far Eastern sea, straight to here
Oh God I feel like I’m in for it now
Its like the rush has gone straight to my brain
But my voice is as lonely as loud
As I whisper the joy of this pain

-The Gift, Angels and Airwaves 

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. 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. 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.