Eleanore Vs. What Comes Around

Dear buckets of stardust (I know have used this introduction before, but I just love it so much!),

I have a cold! Again! The most minor yet most aggravating of all illnesses. Cue the chain of obscenities flying from my mouth because I fucking hate colds. In a twisted way I find it humorous that on Friday I was txting my friend Chris who was sick with a cold. Saturday night I came down with mine. So, I think it’s safe to assume the fact that I merely read the words he wrote to me, “I have a cold,” was enough to infect me.

Earlier today I was whining via txt message to one of my other friends about how much I detest colds. My SMS rampage got me to consider the fact that despite my loathing towards the common cold, I am actually able to handle them significantly better than I used to. Keep in mind, due to having a slightly compromised immune system, I still catch pretty much anything that I come into contact with, and it still hits hard. This is especially terrifying when horrible strains of viruses are trending on Facebook convincing us all of a zombie apocalypse on the horizon. However, it was far worse when I was a child. Flashback time!

When I was a young warthog, I was not nearly as chronically ill as I am now. In fact, aside from severe seasonal allergies, a cat allergy, and my dreadful awkwardness, I was somewhat normal (you know, minus the whole constant abuse thing, but that’s a horse of a different color). Well, and that fact that I was extremely attractive…to viruses, that is. I got every single virus that went around, and while my siblings would get over them like most average humans, my sicknesses would seemingly last forever. No matter what we did to treat them, I wouldn’t get better, and I always seemed to suffer more than others. My siblings and most others added it up to me being dramatic. I was constantly made fun of and accused of faking my illnesses, when in fact I was often frustrated that I couldn’t go to school because I just wanted to be like everyone else rather than stuck in a bed for eternity like a feverish vampire.

At 16 I ended up collapsing in the middle of the night, then proceeded to vomit non stop for nearly a day straight. I couldn’t even drink a thimble full of water without promptly throwing up, so I was finally taken to the doctor. I still am unsure how I contracted the illness, but I came down with the Norovirus, a form of the flu predominantly found in infants. Spoiler alert: I was not an infant. I was hospitalized for a few days because it had made me so ill that I coded at my doctor’s office. It was the only time a code was called one me when I wasn’t going into anaphylactic shock, and the situation was altogether terrifying.

I believe that a large amount of my suffering when I was younger was specifically due to the fact that I was not aware that I had an autoimmune disease, and the thing is, you can’t exactly treat what you aren’t aware of. I wasn’t diagnosed with Celiac until I was 18, when I was thin as a skeleton, with deep sunken eyes and far too close to permanent hospitalization or death. Once I was diagnosed with the disease and learned more about it, it made sense that my immune system wasn’t the best at fighting infections. As I began to treat my body as a whole, rather than only the symptom of a weak immune system, slowly but surely I made my way back from looking and feeling like Jack Skellington himself.

Nowadays I still get colds quite easily, but it seems that overall I react a bit more normally than I did as a youngling. Of course, I will always be compromised, and I live every day with the fear that I might contract something that my body won’t be able to fight back. The thought has always terrorized me, and most likely will for the rest of my existence. It’s quite a killjoy, and this fear has made me somewhat of a germophobe, which some say is actually more harmful than useful. But when being overly clean isn’t the answer, but every exposure takes me over, what’s a sickly cluster of stardust to do?

I am immensely grateful that I have seen some improvement, so I suppose I should stop being such an asshole towards colds, and thank my body for leveling up over the years. But regardless, colds are still annoying and throw my life for a curve, which especially now is unneeded to say the least. I suppose all I can do is hope that my immune system continues to be on its way up despite so many other parts of my health getting worse. Maybe it’s a trade off, or maybe as my darling sister says, I truly am a real life Benjamin Button, aging in reverse.

 

Whatever the case, here’s to my life as well as yours, dear reader, forever climbing upwards.

Yesterday, is not quite what it could’ve been, as were most of all the days before.
But I swear today, with every breath I’m breathing in,
I’ll be trying to make it so much more.

~Up and Up – Relient K*

*this song always gets me a bit teary. Sorry for the feels in advance. 

 

 

Eleanore Vs. Fear Itself

TW: fear, death

Dear citizens of Halloween town,

The last few weeks have tested me. I think so far I’m getting a C on the test, but that’s probably because I’ve never been great at studying.

A few weeks ago I was talking my dearest friend Stan. We’ve known each other for exactly half my life, and in those thirteen years we have strongly influenced each other. I would be such a drastically different person if not for growing up with him. Our friendship has been one of the only consistently trustworthy things I’ve had in my life. To say I’m fortunate to have grown up with such a fantastic human being is an understatement; but I digress…because I could rant about how amazing he is for basically forever.  My point is, due to our closeness, he knows me better than anyone else. He can read my mind and can tell me what I need to hear. He can also tell me what I sometimes don’t want to hear, but need to hear for my own benefit.

As we talked I told him that  I never had so much anxiety about getting more sick or dying as I do this year. I’ve always had a fear of dying young, but this year more than ever, the fear has been constricting me every second and it weighs on my heart like a thousand tons of cement. It’s not easy to carry it around with me, especially considering I’ve had more than a few close calls that repeat in my mind. As I’ve said countless times before, my ultimate goal is to live a healthy, long and happy life. Especially at my work I see people every day who alter bodies in order to make others think they haven’t made it to an older age; but as someone who is young and has had to face the prospect of having my life cut short, growing old is all I’ve ever wanted.

I’ve explained this to a few select people and of course not many know what to say. At best I’m given sympathy, and at worst  I’m given shrugs and thick silence. While it is understandable this isn’t exactly a brunch table topic, I feel it is something those with chronic illness have to face; the uncertainty of the future and whether or not we’ll still be here for it.

As I spoke a little faster and more clumsily because my anxiety was beginning to knot my words into a frenzy, fear came pouring out of me. My eyes filled with tears and my stomach tightened as I released my darkest fear to the person who knows me best. After the emotional storm, he told me one simple sentence that had never, ever been spoken to me: “you don’t have the obligation to be scared.”

At fist this might not sound so fantastic. However he continued on to explain to me that those of us with chronic illness (including him by the way), feel that it is our obligation to be fearful. If we’re always scared, it feels like we’re doing everything that we can to prevent the worst from happening to us. It makes us feel responsible and like we can in some way save ourselves. Yet even with all the fear I’ve collected throughout my chronically ill life and all that I’ve done to prevent bad things from happening to me, they still have. They still have. 

Stan explained that if I were to strive for a calmness and acceptance that I’m doing everything I can already, and that maybe there isn’t more to be done, that I might be capable of releasing myself from my anxiety and constant fear. Especially because I was raised by a fear monger, it was pumped into me from the start of my existence that I must always, always fear. I must fear the known and unknown and everything in between, including my heath. Growing up, I thought this was all normal. As I grow older and discover life through my own eyes rather than the pair I was forced to look through, I’m finding that many of my lessons are being proven wrong.

A few weeks ago I wrote this post  (click the blue to read after!) in regards to the fact that it is difficult to deal with chronic pain because at a certain point the line between an emergency and your normal state of sickness is convoluted. The fogginess leads us to be fearful all the time, non-stop, because we’re never entirely sure what’s happening to us. While Stan’s epiphany has caused me a great deal of introspection, I still feel the same way. After all, I can’t change 26 years worth of fearing in three weeks.

While it makes us all very uncomfortable, the fact is that no matter how scared I am, no matter how I try to prevent negative experiences, they’re still going to happen. I can’t express enough how much I fucking despise the feeling of losing consciousness during one of my Vasovagal episodes. The truth is, regardless of how much I hate these episodes, while I do everything I can to promote my own wellness, they’re still going to happen sometimes, because there is a good deal that I’m just simply not in control of.

I’ve mentioned before that I’ve started to do Yoga on my better days and physically it is a terrific help. It’s also been somewhat helpful for my mental health too. In particular, I’ve become extremely fond of one mantra that I hear often during my practice. “I let go of that which I cannot control.” Ever so slowly, I’m learning the importance of this, especially in regards to my health. I must let go what I cannot control.

Of course this doesn’t mean one should not take any responsibility for themselves. If you’re a Celiac who doesn’t care about what they eat and then complain about your symptoms, I cannot have sympathy for you (and I am a Celiac). Those who are chronically ill have a responsibility to themselves to advocate as best they can. When you truly have done everything possible to be the best version of yourself despite your illnesses, you have a little less to fear, because you’re making the “things to be afraid of” list shrink a bit. It would be nice to obliterate it entirely, but I think even for the healthiest people, at certain points, being a human is a little bit frightening to do. Even more so when you put all your passion into it.

I’m not going to say everyone should stop being afraid. I’m not going to lie and say I’m magically cured of all my fear either, because I’d be lying through my maloclussed teeth. I will say that I believe that the stress that comes from the constant fear is sickening and aggravates every single one of my diagnoses, and I think that goes for most people.

Chronically ill people are constantly suffocated under stereotypes of what we should be like, and while that’s a horse of a different color and a post for another time, I will say that these stereotypes are unnecessary pressure placed upon us. To cut my rant short, there is no correct way to be chronically ill, regardless of what society tells us.

Though we are constantly hurting, end up in hospitals more than any person should, and even  when our entire futures are unclear because we have no idea how we’ll function, fear does not have to be so tightly wound around our throats, choking out the remaining joy we have. Fear is not the only option. While I’m not totally sure how to make it less dominant in my life, I do know that I am going to start making calmness and relaxation more of a priority in my life, as well as working on acceptance of what I cannot control. Sounds like a piece of cake…right?

The only thing to fear is fear itself. But holy crap…fear is terrifying.

Quit crying your eyes out,

Quit crying your eyes out, and baby c’mon,

isn’t there something familiar about me?

The past is only the future with the lights on.

~Baby C’mon- +44

 

Eleanore Vs. The Young and the Arthritic

Dear real life people,

Lately I have been addicted to Jane the Virgin. I’m definitely one of those people who upon becoming enthralled with a book, show, movie or album, begins to envision their life in the same style of whatever has them so enchanted. I’ve always had a wild imagination and it’s one trait I’m (mostly) thankful for, as it makes my mind far more intriguing than what I imagine it would be with a tamer processing system.

So of course, I’ve been fantasizing about my life as much as Jane herself does in the show. Part of the show is about Jane’s journey to become a writer, and that part I don’t have to imagine at all, because I’m on the same one…though it’s currently taken a back seat to my Netflix addiction. Oops.

BUT!

That’s not the point of the post. What is the point of this, you ask? Well hold onto your butts, real life people who are definitely not television characters, because I’m about to tell you.

Being chronically ill and disabled is, for lack of a better phrase, a clusterfuck. It’s a full time job with no pay and endless suffering. Not to mention people like me never had a say in whether or not we actually wanted the job to begin with. We were kind of just launched into the messy world of hospitals and illness, the world said, “good luck, bitches!” and that was about it. For some people, they were launched into this world in their 40’s or 50’s. If they’re extremely lucky like my grandmother, they are fortunate enough to not have to deal with it until their late 80’s. If a person is extremely unfortunate like myself, the minute we took our first breath of air, it hurt, because we were already sick and our body had to start fighting for us the very second it came to life.

As I’ve said a bazillion times before, I have been unwell starting from the first day of my existence, which would be July 4th, 1990 at 6:25am, in case you were wondering, which you most likely weren’t. From there it only got worse and despite my grandmother’s relentlessly hopeful words such as, “you’ll grow out of it,” and, “it won’t last forever,” she was wrong. Instead I grew more into my illnesses and collected more along the way.

Some of my illnesses I was not diagnosed with until my teens, though I had felt the symptoms of them for most of my life. I just often lacked the descriptors needed to explain what exactly what wrong with me. One of the illnesses I’ve have for just about forever is Osteoarthritis. Though I was not officially diagnosed until I was in my early 20’s, I’ve felt the pain of it since I was about 7 years old.

Flashback time! The first time I ever felt spinal pain I was 7 years old, waiting at my elementary school in a SINGLE. FILED. LINE. (remember how our teachers were so demanding of that?) My grandmother had just left because my teacher had come out, and one by one, the tiny humans in front of me marched into the classroom. I made the move to follow, but was suddenly paralyzed with pain. A searing feeling flowed into my back, along my spine, and up into my neck. I felt like I couldn’t breathe let alone walk, but I had to.  I was terrified yet couldn’t describe it to my teacher, and for some reason remember feeling as if even if I did, she wouldn’t believe me. Finally I sat in the hard plastic seat at my desk, which was spinal kryptonite. I went halfway through the day before the pain finally allowed me to function a bit more, but I was still scared. I never told anyone.

As life continued on my spinal pain only got worse.. I’m not sure why I never told anyone. Maybe it was because I was abused, maybe it was because my young mind couldn’t articulate it. It wasn’t until I was 16 and I got my periods that I finally spoke up, because the periods had made the spinal pain so much worse that not only did my back hurt, but my legs would give out so I couldn’t walk, and I began to pass out nearly every time I had my periods as they were triggering my Vasovgal Syncope.

Flash forward to when I was 25. I found out after I had my hysterectomy that while I had arthritis in my neck and spine, I also had endometriosis on a nerve cluster in my spine that made the arthritis as well as my entire existence so, so much worse. The endometriosis was removed along with my uterus, and I was incredibly relieved. However, after I recovered from my surgery my relief turned into disappointment. While I was liberated from my horrific periods, my spinal pain continued to increase, because I still had arthritis and there is just nothing to be done about that.

I work at a salon where all kinds of people come in. There are especially a lot of older women that come into my salon, and the majority of them are absolutely lovely and friendly as can be. However, regardless of how kind they are, I hear this phrase over and over that frankly, makes my fucking skin crawl: “enjoy it while you’re young, just wait till you get older.” I realize that these women know nothing about me. I realize that it’s a harmless cliche phrase that people have been saying to their younger generations for forever. But you know what? It still makes me angry. Like “Hulk Smash!” angry.

They don’t understand that for people such as myself who have been chronically ill from the very start, this phrase is incredibly insulting. To start, the phrase, “enjoy it while you’re young,” is insinuating that I haven’t experienced health issues, pain, suffering, or loss, when in reality I’ve most likely experienced more of every one of those than some people three times my age. I’m well aware that 26 is young, but I have lived a life that has been nothing but struggle. I’ve met people far older than me who have never been hospitalized, never been in an ambulance, or have never been diagnosed with a major illness, and while I think that’s wonderful because I certainly don’t wish my misery on anyone, it’s absolutely mind blowing to me that a person’s life could not contain those things.

To me, while I know my life is not an “average” one, it is normal to me because it’s all I’ve ever known. I’ve never been able to enjoy being young because instead of throwing parties, I was hospitalized. Instead of drinking and experimenting, I was double checking that I had enough Advil and my Epi-Pen to get me through a school day. I never got to enjoy being young, because my health issues have always come first. Now in my late 20’s I often feel like I’ve been robbed of my teenage years, and sometimes I hope for a redo. My sister says that it is possible that I’m aging backwards; I can only hope she is right.

Furthermore, I don’t really have to “wait until I’m older,” to experience my body failing me. I’ve been living with it since I was a child, and I will be the rest of my life. I mean for fuck’s sake, I’ve had arthritis since my childhood. Just the other day, my “adoptive mother” Rose told me as I was cracking my knuckles, “don’t do that! You’ll get arthritis!” my immediate reply was, “I already have it.”

Here is my plea to everyone, but especially those who are older than 30: please, for the love of every god I can think of including Cthulhu and the Flying Spaghetti Monster:

STOP ASSUMING SOMEONE’S LIFE IS EASY JUST BECAUSE THEY ARE YOUNG. IT’S DUMB. IT’S RUDE. IT’S ANNOYING.

It’s true that my life isn’t harder than everyone’s, regardless of age. I know there are billions of people who have suffered just as much as I if not worse. But that’s exactly my point. I don’t go around assuming that my life is worse and that no one could possibly understand what it’s like. I don’t tell people, “just wait till you’re 26 and get diagnosed with Chronic Fatigue Syndrome,” or, “just wait until you’re hospitalized for the 150th time, you basically know as much as the nurses do and can read their minds.” That would be ignorant and I’m almost certain most people would find that strange. So if that’s unacceptable, the phrase, “just wait till your older,” should be as well.

For those who may think I’m being overly sensitive and that my generation is way to “politically correct” or “touchy”, I’d like to remind them of the fact that people used to (and often still get insulted) when words like vagina, fuck and penis are used in the media. People used to be appalled at the thought of black children going to school with white children. People used to be threatened by the idea of a woman working a full time job. So believe me when I tell you that my generation is NOT the sensitive one.

On the contrary, I am thankful to be a dirty rotten “millennial” (god I hate that word) because our generation is slowly but surely working to become more accepting of so many things, and that includes beginning to understand disabled people like me.I want to be a part of a world that is more empathetic and understanding, even if my itty-bitty contribution is this blog.

I hope more than anything that I get old, because I have been through so many events in my life which nearly ended before it ever had the chance to start. I look forward to my wrinkles and my grey hair because they will mean I’ve survived every single one of my diagnoses.

Here’s to your life my dear reader, however long it’s been so far, and however much pain it has contained.

I hope that it continues on in the most wondrous ways.

I’ve never so adored you, I’m twisting allegories now.
I want to complicate you, don’t let me do this to myself.

I’m chasing roller coasters, I’ve got to have you closer now.

Endless romantic stories, you never could control me.

~Panic! at the Disco – Far too Young to Die

Eleanore Vs. Odd Conversations

Dearest readers,

Lately, I’ve been leaning towards the Dark Side. While it isn’t a good feeling to be sick, in pain, frustrated, and all the other nasty feelings I face on a daily basis, I also think that in the slightly overused words of John Green:

That’s the thing about pain. It demands to be felt.

At this point, millions of people relate to this quote for every reason under the sun (just kidding. I live in Missouri, the sun does not exist here). I find it really hits home for those of us who are perpetually sick. I believe that it’s alright to go to the Dark Side, that sometimes you have no choice in the matter, and that the first step to getting better is almost always hurting more, getting worse, and fighting your way through the sickness with bloodied knuckles and plenty of tears.

BUT!

I also appreciate breaks in the misery, and that is exactly what I am hoping this post will be. I have always fought to retain my sense of humor. I’ve done pretty well at this so far, and hope to continue to do so. Even in the worst conditions, I try my hardest to make nurses, doctors, and others laugh. I try to remember my compassion, and be aware of the fact that while few jobs are as difficult as being chronically ill, being a nurse or doctor is definitely on the same level. Both sides seem to experience more bad days than good. Whether we are the ones struggling to breathe or the ones rushing to help someone regain their breath, we are both fighting against the most vicious battles for life. So, we all deserve a little comical relief now and then.

I am a very silly person at times, and if you have followed me long, you’ve noticed I don’t have much of a filter and generally say whatever I like. This makes for very interesting conversation with strangers. My darling readers, I present to you, a small collection of ridiculous conversations I’ve had, that when I look back on, cause me to giggle and wonder how anyone talks to me at all (while also hoping they at least made the other person’s day a bit more interesting).

Regarding Eating Gluten Free

Cashier: Oh, you eat gluten free! Me too!

Me: Oh really, cool! Do you have Celiac Disease as well?

Cashier: No, I just do it because I think it is good for me.

Me: Oh. That’s cool. I eat gluten free because otherwise I’d die.

Cashier: ……

Cashier:……………

Cashier:.……………………………

Me: Uhm…bye.

Regarding an X-Ray

Tech: Oh I’m sorry I didn’t tell you before, but could you remove your bra from under your shirt? The underwire would interfere with the images.

Me: Yeah, I mean, if teenage boys can do it, I’m sure I can too!

Tech and others: *laughter*

Regarding my sexuality

(Somehow our conversation about nerds got turned into a conversation about sexuality)

Cashier: I’m sorry, I know bisexuals totally exist, but I have to stick to my beliefs. You’re either gay or not, there is no middle. It’s like a buffet, you can’t have tacos and hot dogs in one sitting.

Me: (Loudly) Oh, but I can, because both are delicious.

Cashier: (Stunned into an awkward laugh while man behind him is staring at me) ………have a good day?

Me: You too!

Regarding my Hysterectomy

Me: (Explaining to OB/GYN about how a male doctor at Urgent Care looked inside me using the metal tool and exclaimed, “Where’s your uterus?!” And how I found it ridiculous for a doctor to ask me that)

OB/GYN: That’s hilarious, I can’t believe that! Next time that happens you should tell him, “I don’t know, I just had it yesterday.”

Me: Or I’ll tell him I left it in my other purse, because that’s totally a normal thing that happens.

Regarding Phlebotomists

Me: You know, when I was a kid I had my blood drawn so often that I began to think you guys were actually vampires, and instead of testing my blood, you would actually just drink it.

Phlebotomist: (Who had been completely silent up to this point)  We do.  (Smiles widely) 

Me: Oh. My. God. I knew it!

Regarding Myself Making Cashiers Feel Weird About Life

Me: Hey, do you remember me? I’m the one that freaked you out by telling you I eat gluten free so I wouldn’t die.

Cashier: OH! Yes I remember that, oh my god, I was shocked, I didn’t know what to say!

Me: I know, I’m sorry…I promise, I’m really not an asshole. I just kind of have no filter.

Well, there you have it, a glimpse into how I try to communicate with people. I don’t think I am very good at it, but I hope this made some people laugh. I also keep asking MRI and CT-Scan techs when I will finally be turned into a ninja turtle from all the scans. They keep saying they don’t know, but I remain hopeful.

I’m suddenly craving pizza.

The time has finally come for us to be the greatest
Cause heroes aren’t born, they’re created.
Long before our days begins,
What every heroes needs

Is a big O greasy pizza.

~Pentatonix – We Are Ninjas

 

 

 

 

 

Eleanore Vs. The Fight for Identity

Dear you, whoever you may be,

There are some mornings that I wake up feeling like Eleanore who just happens to have a profusion of medical conditions. Most days, I wake up feeling like a sick girl, my name and everything else taking a back seat. Neither is ideal, but the first is usually preferred as I still hold my identity. With the second, I don’t feel like any version of myself at all. When I look in the mirror, I don’t see an aspiring writer, a friend, or a sister; I see a pale, sickly girl with sunken eyes on the verge of tears, staring down uncertainty.

I ponder more than I probably should about how illness robs a person of their identity. In a perfect coincidence this morning, a friend tagged me in this video not long after I woke up, about a clothing designer who took to making hospital gowns for chronically ill teens so that they are still allowed to be themselves during hospitalization. One girl states, “Being in a hospital gown is like being is a hospital. There’s nothing good about it.” A boy immediately after says, “It sorta feels like my identity has been stripped away from me.”

 

These teens will never know how badly I, a chronically ill adult who once was a chronically ill teen, wanted to rip through the computer screen and hold them as we cried together for their pain. The look on their faces when the new, unique gowns are carted in are astounding. My sad tears morphed into happy ones, but didn’t fall from my eyes any less quickly.

For a while I was speechless because there was so much about this subject that I wanted to pour out of my heart. Due to feeling somewhat empty today myself, I lack the ability to open my heart wide enough to do so, and all I replied was, “Very rad. Nothing strips a person of their being faster than a hospital gown and a bed used by millions of sick people before them.” Then I remembered that because I am the sort of person who regularly has their heart burst from an overload of emotion, I have a blog. As it so happens, my blog is just perfect for this  exact sort of thing, so I now find myself ferociously typing as much as I can get out before I must pause for work.

A hospital bed and a hospital gown rob you of your identity quickly as possible; they are thieves of the soul that accompany the rest of the misery that comes with being sick. After so many of my own hospitalizations, I remember the first thing I would usually ask my doctors was, “can I please put my clothes on now?”

I understand (as these teens do I am sure) why we are put into these gowns, and we know it makes sense. We aren’t ungrateful for receiving medical care (after all, the one good thing about being in the hospital is that you’re getting the treatment you need). But that being said, receiving proper treatment should not have total annihilation of one’s identity as a part of it.The feeling of losing your identity is not a slow, steady decline. All too often, just like our health, it is ripped from us. That tearing leaves a hole. This isn’t the fault of the patient, the nurses or the doctors. If anything, the only one we can truly blame for this is the illness itself.

I’ll never forget my nurse, Marie, at Stanford. Every morning she brushed my (at the time) long, thick, messy hair for me so that I would look somewhat decent when visitors came, and every night tied it up in a high bun so that it would stay nice until the next day. Marie doing my hair for me each morning and night was the only thing that kept me feeling human among the tubes, the gown, and the blinding shades of white that covered my hospital room.

Confession: this post has been several days in the making, as it has been a difficult week. Every day since writing the first paragraph, I have woken up feeling the same. Not as myself who happens to be sick, but as just a package of sick. It’s not the best set up to get through the rest of any day, but it’s what I have been given these last few days, so I am dealing with it as best as possible.

Many people who aren’t like myself don’t understand that once your identity is stripped from your being by illness, hospital gowns and the like, it doesn’t automatically snap back once you’re home and back in your favorite clothes. I have been chronically ill my entire life, and because of that, I’ve never thought much about my life goals, a dream career, or what I’d like my future to look like. I have ideas here and there, but nothing ever really sticks.

For people such as myself the future is irrelevant, because it is so uncertain if we’ll even get that far. We have to use so much energy to get through each day that there isn’t much strength left for a week ahead, let alone an entire year. Just this past week I was asked what my life goals are. My response was, “I really don’t know, but I enjoy writing.” If I were 15 or 16, that wouldn’t be such a terrible answer. But I am 26, and while most of my friends have careers, families, wedding to plan, children, or are at least working towards one of those, I’m sitting here saying, “I don’t know, but I like writing.” I can’t help but feel a little pathetic.

For lack of a more articulate expression, it really fucking sucks having to wrestle my identity from the wicked clutches of my illnesses on a daily basis. I fear that this will never stop, and considering all of my illnesses are incurable, there’s a fairly good chance that it won’t. It is extremely disruptive to my life when I wake up most mornings, look into a mirror, and feel as if I’m looking at nothing more than a plain piece of paper. I suppose the only way to combat this is to literally, every day, fight to push meaning into my identity, yet I am unsure of how to do so. It sounds exhausting.

The one positive message that comes out of this slightly bleak post is this: those people who actively work to return the feeling of being human to those who are overwhelmed by illness are awe-inspiring. This designer who makes these gorgeous hospital gowns, my nurse who simply brushed my hair and treated me like a girl and not just another bar code on a weak wrist, and friends and family who do little things here and there to remind us that we most certainly are more than our diseases, syndromes, and most importantly, more than our pain.Hopefully as I get older, I’ll be able to look in the mirror and see more than a zombie girl.

 

Well I crossed the river, fell into the sea.
Where the non-believers go beyond belief.

Then I scratched the surface in the mouth of hell,
Running out of service, in the blood I fell.

Well I, I just want to see the light.
And I, I don’t want to lose my sight
Well I, I just want to see the light
And I need to know what’s worth the fight.

~See The Light – Green Day

 

 

 

Eleanore Vs. Broken Pieces of a Whole

Darling whole readers who are not Reeses’ Pieces (what gives Reese the right to claim all the peanut butter candy, anyway? Greedy bastard),

It’s really sad how much I can relate to this Pikachu right now.

My life is so much…muchness. Every now and then I find myself looking back at everything I have been through in my 25 years, and I think, “wow, that’s an awful lot in a very small amount of time.” I’ve been deemed an “old soul” by dozens of people, and most days I feel it, but I can’t seem to figure out if my life has always been this difficult and I just feel it more on certain days compared to others, or if some parts of my life, such as the one I am currently experiencing, are truly worse than the majority.  I suppose in the end it doesn’t matter a ton, does it?

That being said, there are a a few things I need to get out in this post, but to prevent it from being entirely incoherent, I will make a few subsections for each part of the whole. Here we go.

Keeping Up

I’m pretty sure all my readers and subscribers are well aware that I am chronically ill, since, you know, that’s the whole point of my blog and YouTube channel. When I first started I was so adamant about keeping a schedule and doing videos that would always come out at the same time and so on in order to keep myself consistent and motivated. However, I found out very quickly that chronic illness and depression don’t give a single fuck about consistency.

I do not write or film for fame or money. I do it because I am passionate about it, I truly love it, and most of all, I love that it is helping people to relate to someone who suffers as they do. My driving force always has been and forever will be to create in order to not only make myself happy, but to make others happy as well. Since that is my goal, on the days when my physical illnesses or my depression and anxiety do not allow me to create as I wish, I listen to it. Not because I am not fighting back, because holy shit, I am fighting harder than I thought I could.

I listen because I am a very transparent person, and I have intentionally pushed myself to keep that transparency in my blogs and videos. Since I’ve done that, it means that if my heart is not in my content, it will be obvious. While I was hoping I could create a steady flow of videos once a week while I write, the fact is that if I have tons of posts and videos that are uninspired, they’re not much better than emptiness. This scares me because I am told that a constant flow of content is the key to success and reaching as many people as I dream of, but I just can’t bring myself to create for any other reason besides the fact that I simply want to.

I’ve spoken to quite a few of my followers (though I always hope to talk to more) and they are such beautiful and strong people. People like that deserve to receive from me only my most sincere work. Not always best, maybe, because I have a lot to learn about my passions. I can’t promise perfectly formatted blog posts or flawlessly edited videos. But I will always promise you my most sincere and genuine self. I am truly sorry that I can’t be as steady as others in these crafts and that I guarantee I will sometimes have to say, “I was going to make something, but now I can’t, and it is postponed.” But the thing about chronic illness is that at a certain point, I just don’t have much of a choice. For lack of eloquence, I will always be my illness’ bitch; at least a little bit.

Stuck Ideas

I have so many drafts of blog posts it’s absurd. As I said before, I am a very transparent person; this isn’t totally my choice but it is how I am, so I try to embrace it. Even still, there are some subjects that I want to speak on that I just can’t. When I try to write about Father’s Day, Alzheimer’s, my grandmother, and many, many other subjects, I start out strong thinking that it will all come pouring out of me as most words do, then halfway through I’m stumped. I have been told my entire life by 90% of everyone I’ve met that I talk too much and that I’m the queen of TMI (Too Much Information). But somehow there is still so much that I struggle to express, and it drives me insane.

It feels like I am in a mental purgatory, caught between wanting to express a certain subject, yet not having the ability for whatever reason it is to write it out. I just feel like…

7ef7a85f0a9573dcd3857450e21245e7

General oflkelrkwlkrwlkw;rwlr;wkrw;gmew;jgwkrkwr;

In general, I am just so fucking frustrated with my entire life at the moment, and I am trying to THINK POSITIVE and BE HOPEFUL and be all those other phrases that people love shoving down my throat. While I know their hearts are in the right place, I kind of want to kick people in the face when I’m being told cliche phrases. Having a positive attitude does help. Having hope is valuable. I have written about this concept, so yes, I understand where people are coming from. I’m also in a bad mood so I may be a bit more of an asshole than normal. But when a person is in immense physical and mental pain and is struggling with every aspect of their lives as I am at the moment, these generalized and watered down notes do. Not. Help. At. All.

I don’t know what the point of this post is, to be honest. I think I became so frustrated trying to write on other specific subjects that I just needed a post where I could explode and rant and ramble. Also pretty sure that 99% of this was just an excuse to use that Jigglypuff picture.

Lately it has been common for me to not have the right words to say, because I am so stressed out that it feels like my brain is melting a little. But one thing I know I can always say, no matter what, is that I am so thankful to those that read my posts, watch my videos, and encourage me to keep going when I feel as if I am Dante fighting my way through hell itself.

I’m so tired of feeling sick, upset, angry, lost, and pain ridden. I am so done with feeling as if the entire universe is bearing down on me. I’m so tired of being scared and financially fucked. I’m tired of fearing for my future and being scared for my grandmother who is literally being driven insane while there is nothing I can do about it at all. I am constantly aggravated and more anxious than ever, always on the verge on a panic attack. I constantly have full blown panic attacks. This is not being helped at all by the fact that I can no longer afford any medical help including pain management which was the only thing to keep me kind of sane. I always feel thirsty and never seem to have enough water in my cup, though I’ve been told countless times this is because I am chronically ill and absorb water like a sponge. My head, jaw, neck, shoulders, spine, back, hips, abdomen, arms, and legs hurt non stop. I feel like I am spiraling and it is terrifying yet I am trying so very hard to hold on.

Please know that I am trying my hardest to fight back every one of my hardships. I don’t know why, but right now I just really need people to know and affirm that. I’m trying so fucking hard. It feels like I am losing a thousand fights, and I’m battered and worn.

But for some reason I just keep going.

love us as we are, see us and we’re holy.
in this shall we shall ever be,
wholly ourselves.
your love will take us far,
praise us and we’ll show you.
from heaven to the glory holes,
glorious and free.

~Erin Mckeown – The Queer Gospel (heard on the Welcome to Nightvale podcast)

 

 

Eleanore Vs. Dentists

Dear readers and your teeth that can’t read, but wouldn’t that be super freaky if they could?

This morning I brushed my teeth in the way that I was directed by my new dentist. As I explained a long, long time ago, I have what’s called a facial maloclussion. This is a deformity caused by a genetic mutation. It means that my jaw is misshapen, I have a severe underbite, the roof of my jaw is caved in, some of my teeth are in the wrong place, and in general my face,mouth, and jaw are in constant pain no matter what I do. As you can imagine, this makes brushing my teeth kind of a fucking nightmare, so I have to do things a little differently than most people do.

Going to the dentist is always incredibly stressful for me. It is for many people, but the fact that I have my facial maloclussion makes all dental work even more complicated than it already is. The complications are made even worse by the fact that I also suffer from vasovagal syncope, a fainting disorder in which my body over reacts to an external trigger. My triggers are sharp, sudden pain, overheating, dehydration, and severe emotional stress. If I encounter any of these, my heart rate and blood pressure plunge, and then, well, the rest of me does, too, and I hit the floor unconscious. Syncopal episodes can happen over and over, too. It’s super fun! (I’m totally lying!)

This means that should I need any type of dental work, I can’t simply be numbed out with a needle to the gums. Instead, I have to go through an ordeal of either meeting with a dentist that does completely knock people out, or hiring an external anesthesiologist, which costs around 2,000 dollars and isn’t covered by insurance. It is beyond frustrating knowing that I have to go through this every. Single. Time.

The last dentist I had before moving to Missouri was Dr. Nader, a sweet dentist that I had from the time I was 13 to literally the week I moved. He was unbelievably kind about my health conditions and amazingly patient. I would run to him every few months in terrible pain with my teeth, sure I  would need some sort of horrible procedure immediately. Every time my teeth were fine. Turns out, having the entire weight of my jaw rest on only my four back teeth makes my teeth grumpy, so every few months they get sore and tired, and raise hell. I also have constant TMJ spasms, which can best be described as a Charlie Horse in the face that lasts around two weeks. I knew that these were happening to me, yet my anxiety and fear of dental work had me running in a frenzy to Dr. Nader every time because I was afraid that the one time I would blow it off, would be the time that something else would be wrong.

I constantly apologized to Dr. Nader for bothering him with nonsense and false alarms. His reply was the same every visit. “You are very dear to me,” he spoke softly, “if you are worried or in pain you can always come to me and we will make sure everything is okay.” Hearing that compared to being rejected by other dentists several times in my life because my situation was “too complicated” or they “didn’t have time to deal with it” was almost unreal.

Aaaand then there was the day about two years ago when the dentist had found that after 2 years of NEVER having a single cavity, I suddenly had 14. FOURTEEN FUCKING CAVITIES. I was stunned; I brushed my teeth so well! I have a electric toothbrush! I FUCKING FLOSS. Well, I was stunned until Dr. Nader informed me that the reason they had all suddenly popped up was because I have Celiac Disease, which, big surprise, causes bone loss. Teeth are made of bone, not marshmallows as I originally thought. DISAPPOINT! 

Dr. Nader, being the serious badass that he is, made a deal with me that since I’d have to be knocked out fully, he would do all 14 fillings at once. So, I set up the appointment, found an anesthesiologist, and starved myself the day of the appointment because that’s what you have to do when you’re about to be filled with a buttload of drugs. As if the day wasn’t already going to suck enough, the anesthesiologist ended up being an hour and a half late; I thought for sure I’d have to reschedule, but Dr. Nader and his assistant Audrey ended up staying two hours past their usual time to do the procedure. Later on I found out that not only did they fill all my cavities, but he doubled checked and found two more which he filled, and did a deep cleaning to help me reach my dream of never having to do through this bullshit ever again.

I was so amazed by the love and care his office showed me. And good lord, did my jaw and mouth hurt the next week! I wanted to repay him and Audrey, so I ended up making them cupcakes and cards that said, “You’re so sweet you give me cavities!” GET IT?! DO YOU GET IT YOU GUYS?! …Anyway.

One of the worst parts of moving away from home was having to gather an entirely new medical team to handle my giant mountain of illnesses, diseases, syndromes and, mysterious “ughs.” I still don’t really have a team to be honest, and since I am losing my insurance next month, it seems futile to do so now. However, I did find a fabulous dentist. I went to visit them last week, and while I did not have any cavities (thank you Dr. Nader!) I did have borderline gum disease, which would have explained the awful metal taste in my mouth the last few months. I had to have a deep cleaning, which they usually numbed patients for. I explained to the dentists my entire complex medical history, and I half expected them to tell me to go somewhere else. Instead, the dentist asked me questions about what he could do, what exactly it would take to get me to vasovagal, and said he even knew several ways for us to handle a situation where I’d need more dental work should it ever arise.

I was given a topical anesthetic before the cleaning, but I was still terrified I’d feel too much and trigger my Vasovagal Syncope. The hygienist explained that she’d do a regular cleaning first, then the deep cleaning second. I nervously sat there, mouth open wide, as the hygienist did her work. She told me the anesthetic would only last 30 minutes, and before I knew it 20 minutes had gone by. “When is she going to do the painful parts?” I wondered. I felt a few sharp pokes here and there, which meant that I’d definitely feel the hardest parts of the cleaning. I got more and more anxious, until I was given a small break to rest my jaw. “When are you going to do the deep cleaning? I don’t mean to be rude, but I’m just worried about the anesthesia wearing off.” I kind of told her with a numbed face and tongue. “I already did it, it was the first thing I did, actually,” she smiled.

Well then. That happened.

I’ve had dentists respond vastly differently to my facial maloclussion. One dentist called over all the dentists in his office to ogle me like a circus animal, then said in front of them all, “are you self conscious about how you look? Well, of course you are, I mean, look at you.” But then I had doctors such as Dr. Nader who assured me he would do anything he could to ease my anxious mind, and every time I cried, would patiently  take my hand in his and tell me we’d figure it out.

Having a plethora of illnesses and medical conditions that make even the most simple things difficult is a real nightmare, but the nightmare is offset by kind and caring doctors that reach far above what is expected of them to help those in need. I am so amazingly thankful for those doctors who take the extra time to help me, despite the fact that I am many times one of their most challenging patients.

And now, a song full of dental puns, because I simply would not be me if I didn’t end this post this way.

I’ve been to the dentist a thousand times, so I know the drill.
I smooth my hair, sit back in the chair,
But somehow, I still get the chills.

“Have a seat” he says pleasantly,
As he shakes my hand, and practically laughs at me.
“Open up nice and wide” he says peering in.
And with a smirk he says “Don’t have a fit, this’ll just pinch a bit”
As he tries not to grin.

When hygienists leave on long vacations,
That’s when dentists scream and lose their patience.

~Owl City – Dental Care

 

 

Ellie Vs. YOUTUBE?!

Dear humans!

The past two weeks I have been hinting that I have been working my butt off on a new project, and the time has come to release it into the wild (the project, not my butt, mind you).

I’ve just started a new YouTube Channel!

Naturally, it’s called Sickly Stardust, and will be an extension of my blog. I’ll talk about some of the same things, many different things, and a whole lot of everything. I have wanted to do this for such a long time, and I am so thrilled to have finally gotten the courage to act upon it.

You can watch my very first video here!

I’ve also started a Facebook page where all my Blogs, Vlogs, updates and things I like will be posted.

Click here to be transported to the book of faces!

I’ll still be writing frequently. While I am not entirely sure what my schedule will be especially since I am starting a new job tomorrow, my goal is to have one video and one blog per week.

I say it in my video but I’ll say it again, thank you so much to all my friends and readers who have inspired me to chase a dream while being all that I am, sickness, oddities and all.

I will write a true blog soon, promise!

With all my love,

Eleanore

Best,
You’ve got to be the best.
You’ve got to change the world,
And use this chance to be heard.
Your time is now.

~Muse- Butterflies and Hurricanes

 

 

Ellie Vs. A Refridgerator

Dear not refrigerators,

This morning I woke up after a rare good night of sleep,and with my Blink-182 hoodie and bleary eyes stumbled into the kitchen, looking forward to my usual breakfast of some type of fruit and some type of cereal. I opened the freezer to grab my gluten free raisin bread, expecting it to be rock solid as it should be;instead,  my bread was at maximum smoosh-pacity. I rummaged through the freezer and found that most everything else was, too.

After I frantically txted my boyfriend and then my landlord, I sat at the kitchen table glaring at the fridge. “You fucking traitor,” I thought. You see, having a refrigerator fail sucks for anyone. It sucks even more when a person doesn’t have an abundance of money, and it sucks most when that’s added to the fact that I  have several illnesses and one disease that make it so that I cannot eat at any restaurants, ever, and even 50% of gluten free food that is ready made I still cannot have because they contain other allergens of mine. It’s a real clusterfuck. I had to throw away half of the food we had, including my butter pecan ice cream and a large gluten free pizza. Rip my heart out, why don’t you.

Thankfully, I have what can only be described as the best landlord ever; within two hours my txt, he left me a  voicemail telling me that our new refrigerator would be delivered Friday. That’s absolutely amazing, honestly. Until then, we’d have to function out of a cooler, which really isn’t that big of a deal. Unless you’re like me. Then it is an extremely big deal, because despite needing badly to go to the store and get a bag of ice, I’m incapable of lifting it. Out of everything that I cannot do, the fact that my boyfriend now has to drive 35 minutes in the rain from work to bring me ice, then drive back to continue working because he has a disabled girlfriend who can’t do it herself fucking stings. I live four blocks from a 7-11, and I can’t get ice, because if I lift anything even slightly heavy, my spine, neck, and shoulders fall apart.

It’s strange how the moments that bring brutal reminders of my disabilities are often small ones, such as watching people dance on television and realizing I can’t do the same, being the only one in a restaurant not eating, or needing something very simple that I can’t do myself. The amount of frustration I feel is overwhelming; I’m frustrated, disappointed, and filled to the brim with anger. So now I sit here uselessly, writing out my irateness while my food warms in my fridge, awaiting my exhausted boyfriend, a cooler, and a single bag of fucking ice because of a damn refrigerator failure. Ugh.

In the grand scheme of my life, the refrigerator failing is not a travesty. The waste of all my food bothers me greatly, especially being raised by immigrants who told stories of starving after WWII destroyed their country. I’ve cried twice today because of this. However, the more I think about it, the more I realize that my tears are not for the wasted food or my broken fridge, but are for the utter hopelessness I feel every time I need to do something that I can’t. It’s a reminder that I’m not like everyone else, and that many people don’t believe me when I tell them that, because most of my illnesses are invisible.

Getting a bag of ice is not such a life altering task, but there are many other things with far worse implications I must do that I cannot. I can’t see the doctors I need to because I can’t afford it, and soon won’t even have health insurance. I can’t work a normal job to make the money I need to survive because of my illnesses and diseases. I am in constant pain because of them, and sometimes can’t even bring myself to get out of bed to complete a task easier than buying ice, such as making my usual breakfast. Unfortunately, my life as a chronically ill person is indefinitely filled with I can’t…and it is terrifying. 

Whenever I am forced to say, “I can’t,” due to my health, it makes me hate myself a little more each time. I’m angry at how much I  have to rely on others to get me through what seem like only minor troubles turned into massive problems simply because I am myself. But I did not choose to be chronically ill and I did not bring it upon myself in any way. Still there are times when I think I could do more, or maybe I can lift the bag of ice if I just tried harder. Most of my life I have been told everything was my fault, and that I was lazy and worthless, or that I wasn’t doing enough. And sometimes, I still believe that. However, I think way, way deep down in my mind, beyond the anger and all the blackness left in there by others, I know that it isn’t my fault. At worst, I am the product of terrible genes. At best, I am a sick girl trying her best, despite the terrible genes and all.

. If I were talking to someone who was identical to me, who blamed themselves for everything they endured, I know for a fact that I would tell them to be kinder to themselves, and that the guilt and anger they inflict upon themselves is only detrimental to their mental and physical health. I’d tell  them that they were only doing their best, and that their well-being must come first sometimes for their own safety. I’d explain that it’s alright that they aren’t “average,” and can’t do everything in the same way most people do. I’d tell them that there could be a new version of normal, a beautiful, fabulous type of life that was just for them, created by them through the effort of themselves and those they love, as well as a good deal of time.

I’d tell them that even on the days when it’s stormy outside and the fridge breaks and their anxiety seems to have rocketed straight to moon, it would be alright in the end.

That’s what I’d tell them.

I can swear I feel the beating of a cold, cold heart,
Or there’s a chill, ’cause it’s showing through your clothing,
And as far as I can tell there is nothing under your v-neck tee.
I’m begging, I’m begging, I’m begging you please now,

Tell me that you want me,  tell me that you need me.
Tell me ’cause I’d like to know.
Won’t you stop teasing me? Won’t you you take it easy?
Tell me ’cause I’d like to know.
You’re never gonna go.

~Phantom Planet – Dropped

Ellie Vs. Being Young and Sick, Someone Else’s Words, and Other Things, Too.

Dearest readers of all ages,

I have never done this before as I have never had the need to; generally I am able to at least to some degree express what I wish. However, every now and then, I am both tongue twisted and finger twisted, left unable to break the silence I have been suffocated by for so long.

This is one of those times.

Being chronically ill and chronically in pain is a horrible battle to face; being young and fighting that battle is infinitely worse. Just a few minutes ago a friend on my Facebook who is also chronically ill and young posted this incredible article that I hope you will all read. It perfectly describes every detail of a young, sick person’s life. The writer, Toni Bernhard, wrote it so well that it actually caused me to nearly burst into tears.

I implore anyone who comes across this post, regardless of who you are, to read this article in full. It is so massively important.

In other news, at the end of this week I will be launching a new project that I am so fucking excited about I could just about explode into a million pieces of rainbow confetti. I can’t wait to share it with you all, and I hope you love it, because I absolutely do.

This has been a slightly odd post written by an even more odd girl.

Now back to your regularly scheduled programming!

So long,

So long and, thanks for nothing.

I’m gone, I’m moving on;

Watch my resurrection.

~ Resurrection – New Found Glory