Eleanore Vs. Privilege in Flux -Part One

TW: Suicide

Dear readers who are my favorite (which is all of you),

The past few days I have been mostly bedridden thanks to my belly. The good news is that for once I’m sick with a completely average tummy virus. The bad news is that considering I already have several illnesses that cause variants of nausea and abdominal discomfort, it has been extra unpleasant. I’ve been on a steady diet of water, gatorade, Ruffles and soup, quarantined in my new bedroom to keep away from my adoptive mothers that I now live with.

I had only returned from Michigan Monday night and without rest was determined to set up my new room. I detest living out of boxes and wanted to feel at home, and the only way I could quell my anxiety was to unpack as quickly as possible. By Thursday morning I had successfully brought my room together. I was feeling accomplished and exhausted, and after work promptly plopped onto my new bed with ill fitting bedsheets; still I was satisfied, because it was my bed.

I awoke in the middle of the night feeling as if I was burning up and was horribly nauseous. I called for my momma Rose, and thankfully since she is a night owl, she came to my assistance. Normally when a person wakes in the middle of the night with such symptoms they can easily assume it’s either a virus or food poisoning. I however am by no means average, and wake up feeling this way more than I’d like to.

The culprit is almost always Vasovagal Syncope accompanied by orthostatic hypotension (low blood pressure that fluctuates abnormally). Together they cause me to have horribly painful episodes followed by losing consciousness. Passing out is one of my least favorite experiences, so as I’ve gotten more familiar with these particular disorders, I’ve tried my best to beat them. I had asked Rose for the proper tools to alleviate my misery, and I started to dry heave, praying to finally throw up as it generally makes me feel better. Despite the ice, water, and elevation of my feet, unlike usual, the suffering only got worse.

I was awake the remainder of the night, struggling to keep myself from fainting or throwing up. I waited until morning so that I could go to Urgent Care, however reminded myself that because I have recently gone from having absolutely no insurance to having Medicaid, I am able to receive some care, though not much. I called several Urgent Cares that were minutes away from my home, none of who would take me. I finally gave up and drove twenty minutes downtown to go to the low income clinic that would see me.

I arrived at the clinic and to my pleasure there was not much of a wait, the doctor was kind and helpful, and within a few hours I had my diagnosis and a bag of medication that I paid very little for. I was promptly on my way home, miserable yet well taken care of.

When I lived with my biological mother, despite her abusiveness and lack of care, I had excellent health insurance through her work. I was able to see nearly every kind of specialist I needed, and as I grew, so did my team of medical specialists in order to get me through my life. It was all expensive and bills piled up quickly, but I was never rejected from a clinic or hospital. I understood how privileged I was to have such good healthcare and tried my best to not take it for granted, but often would complain about the fact that at my young age, I should not have to see as many doctors as I did or have to be as sick as I am.

When I moved away from my family to St. Louis, Missouri, I lost my health insurance. My team of doctors begged me not to move because they knew I would struggle terribly, but I told them it would not matter as I would not have my mother’s insurance forever. Within months of moving I had applied for disability only to receive a two year wait period, and each of my five Medicaid applications were instantly rejected. The only place I could go for medical help that would not reject me was the Emergency Room. Though I was thankful I at least had the Emergency Room, I was constantly deflated because it was always filled with those who were truly in emergency situations while those such as myself with no insurance didn’t particularly need emergency help, but had nowhere else to go.

At my lowest point last year, my anxiety and depression were getting uncontrollable. I couldn’t find a job, was chronically ill with no medical care, had little support from friends and family, was in an unhealthy relationship, and I began struggling to find a good reason to stay alive. I reached out to suicide hotlines and thankfully, one particular hotline I had found from a simple Google search lead me to a wonderful woman who was not only able to talk to down, but referred me out to a mobile crisis intervention program. Two days after my call, two kind men showed up at my door, talked to me in detail about my situation, and at the end of it all referred me to a program for long term help. At my qualification interview at the center, I was considered an emergency patient, was immediately accepted into the program, and within a week suddenly had a social worker and a psychiatrist.

I was amazed by how fortunate I was to go from a complete loss of hope to a lifeline of light cast in my direction. As I moved forward, my social worker helped me to find medical help and more importantly, helped me to find a reason to continue my life. My suicidal anxiety attacks slowly began to subside, and though my life was still nightmarish, I was regaining my faith in myself and others. Though the building the clinic in was run down and depressing and I was only able to see my psychiatrist once a month, it was more than I had before, so I was grateful.

I fell from having exceptional medical care to nothing at all, and it was torturous. It opened my eyes to the fact that though it was frustrating having to constantly have appointments and tests, the fact that I could afford it all was truly a blessing that I took for granted. When I lost it, I found myself aggravated at those who were chronically ill and complained about getting spectacular medical care. I felt my anger deep in my stomach, screaming out, “shut the hell up! At least you can get medical care, I have a massive pile of disease and sickness and I have nothing to help me at all!” A tiny Hulk would often take over inside me.

When I was accepted into the mental health program and received my social worker and psychiatrist, at first I admit I was annoyed by how little they could do for me. However, I quickly reminded myself that I had lost everything, and began to feel a different sort of privilege.

To be continued…

You will feel love again, after the rain.

Ellie Vs. 2015

Hello there lovely readers,

My entire state has been under a state of emergency due to a rainstorm’s massive three day tantrum. The rainstorm has not only made Saint Louis gloomy but has made my insides more gloomy than usual as well. Despite all the gloom (the emotion, not the Pokemon, mind you) I am trying to stay positive, so here’s a (fairly) positive post. It starts with a question, a quote, and a quail. Okay. No quails. I just think alliteration is fun. Here we go.

Have you ever suffered a cringe attack? I experience approximately three thousand a day, especially since I am frequently at home alone which leaves my brain and I to battle each other all day. If you don’t know what a cringe attack is, Dan Howell, the YouTuber known as Danisnotonfire, explains it well:

This a phenomenon I like to refer to as a cringe attack. This is when on a typical day you’re sat innocently enjoying life when out of nowhere BAM! A wild repressed memory appears! Suddenly out of nowhere your brain decides to relive a horrible memory from the past.

I’ll post the entire video below, but for now, this excerpt pretty much sums up the situation.

Throughout every year, I get cringe attacks, and I am suddenly gobbled up by things I had done the year before that were shamefully cringe worthy. This horrible experience is promptly followed by the thought, “why the hell was I like that? God, I was so stupid back then!” and for the rest of the day I recount every idiotic moment I’ve ever created and try not to hate myself.

BUT THEN! 

I was bitch slapped with an epiphany this year that actually made me thankful for these attacks, and made me realize that cringe attacks are kind of fantastic.  While these cringe attacks are definitely disturbing, the fact that I can look back and realize that I did something stupid is actually a good thing, because it means that I am growing, changing, and that I am not the same person I was a few years ago when I did whatever it is that is haunting my brain.

To be able to look back and say, “wow, I was ridiculous back then and I am so different now,” means that while I will always make mistakes no matter how old I am, I am also improving as my life goes on. So, in retrospect, I’m actually doing this whole life things sort of correctly. The people who never change or who can never look back and see the difference between the past and present versions of themselves are the ones that we all should really be concerned about. Living life and thriving in life are two very different ways to go about being a human. I have no interest in just “getting by” in life; I want to learn, grow, blossom, and look back on every year with plenty of cringe attacks that not only show the mistakes I have made, but how I have grown past them.

It is also important to acknowledge that I never have believed in New Years Resolutions. While I understand the premise behind a New Year bringing new goals, I don’t believe a person should wait till a new year or even a new day to make an important and positive change in their lives. Too many people use the New Year as an excuse to put change off until the new year comes. I strongly believe that every day is a new day, and if we humans were as smart as we think we are , we would take full advantage of each day, and execute resolutions on many days throughout the year, not just in the last week of December.

With that extensive introduction, I present to you not my New Years Resolutions, but rather a list of lessons I have been taught this year. While many of them have been learned painfully, they are extremely valuable, have changed me for the better, and will hopefully carry me into 2016 with a little more strength than I had before the year started.

Ellie’s Non-Resolutions of 2015 (as in things that I don’t have to decide to do because they have already happened to me whether I wanted them to or not) 

Unexpected Friends

Through my hardships this year I was surprised by several people who were barely acquaintances suddenly coming through for me when I needed help the most. Now these people are my group of very best friends, and are priceless to me. I am slowly learning to not only give love, but to receive it more openly than ever before.

Be kind to everyone you meet, whether you talk to them every day or only once every few months. You never know who may have the kindness and ability to help you when you are struggling. And likewise, lend a hand to a person you may not be “best friends” with, because that too can lead to an incredible relationship you would regret passing up. A little love can go a fantastically long way.

You Are More Than You Think You Are

My good friend Matt has told me for years that I am stronger than I think I am. He always told me this when I was at my lowest, so naturally, I dismissed it as bullshit.

I apologize to Matt, because as it turns out, he was right. I didn’t think I had the strength to get through my hysterectomy, and I did. I didn’t think I had the bravery to give up my hometown and move to a foreign state, yet here I am, a pathetically, perpetually cold Californian in the beginnings of a Saint Louis winter. I didn’t think I had the willpower to deal with yet another diagnosis that I got in October, or that I was innovative enough to start my own small business after learning I could not work a normal job. Yet somehow, someway, I have done or am doing each and every one of these things, because as it turns out, I am not only stronger than I think, but I am all around more everything than I ever thought I was. In reality, we all are, if we allow ourselves to dictate what we are instead of the parts of life that cause us distress.

It’s Easier Than You Think To Become a Narcissist

I have been in physical and mental pain literally since the day I was born, and it has only gotten worse as I have gotten older. It takes more energy than most “average” people could even begin to imagine to just get out of bed every day and live this somewhat broken life that I am forced t0 live.

I tend to pride myself on being an empathic person, and I certainly am. Even still, because of my own life taking so much strength to just do simple things, I found that after I had moved, while dealing with a complete change of environment with no time to grieve or heal from my hysterectomy, I became a narcissist. And I probably still am one, to a hopefully lesser extent. I felt (and sometimes too) that no one could possibly understand my pain, and that no one had pain as severe as mine. It’s true that many lives are far easier than my own; but there are also many lives which are just as hard if not hard than mine as well.

My own pain began to completely absorb me and I lost sight of everything else, including the fact that many other people I love were also struggling, and just like I needed love and support, they needed mine, too. I am glad that I came to this realization, because although it is painful to admit to yourself that you’re in the wrong, it’s the only way you will continue to grow. Now that I realize that it’s very easy to fall into narcissism, I consciously make the decision every single day to not only acknowledge my own pain, but to acknowledge other’s around me as well. No matter how sick I get, no matter how terrible I feel, I want to still be as great as a friend, girlfriend, and sister as I can possibly be. To do that takes  work, more work than I thought it would; but the people I love are deserving of all that effort. Even if my boyfriend having a bad day at work is not nearly as severe as an issue as my health problems, he still deserves to be comforted by me, and to receive my love and understanding. Everyone deserves love and understanding when they are struggling.

Life is YOUR Decision

This heading sounds like the title of a bad self help book, but it is a fitting title for this last section. I promise I won’t try to sell you a kit at the end of this post.

A few months ago, I got diagnosed with a little bastard on my spinal cord called a syrinx. In short, it’s a cyst that was caused by a tear in my spinal cord, and when it gets aggravated, it pisses off all the nerves in the upper half of my body and causes excruciating pain that will almost definitely cause me to pass out.

Once I got that diagnosis added to my already long list of things wrong with me, along with the harsh realization that I will never be normal and most certainly will never work a normal job (which means for the time being will have no way to make any money), I began to lose my mind.

I went to my counselor and told him I was very close to falling off a very fragile ledge, because my entire life was officially out of control. Instead of coddling me or allowing me to fall into a self pity pit, he told me, “you have a choice. You can spend the rest of your life being miserable about the fact that you are not like everyone else, or, you can choose to create a ‘new normal’ for yourself, and thrive in the life you have been given. Those are your only two options.”

At first, I was irritated at this, and my inner child was throwing a fantastic fit. “Feel sorry for me, dammit!” the inner child screamed as she slammed her fists on the ground. Thankfully, I told her to calm the fuck down, because I am in fact not a four year old, but a 25 year old, and my counselor was right. I have to make that choice. I will never be mentally or physically considered “normal.” So, I must choose every morning that I will not pine for a life that I will never have, but instead will fight however hard I have to in order to create an amazing life that I love, disabilities, pain and all.

This last lesson is by far the most valuable thing I have learned this year. There are many factors I cannot control in life. I cannot fully control my health or how I feel each day. But there are also many choices I can make, like what I do within my limits given to me, and how I react to them.

So, with all these lessons, I am hoping that both I and the universe will choose to make 2016 better than this year for everyone I know. 2015 has been a bit of a bitch, but hey, look at us; we made it. We actually made it.

Happy New Year, dear friends.

Shouldn’t try to fix it if it keeps getting better,
Just let it go, forget it for ever and ever and ever.
Don’t ever resent a letter inside a single word written,
A little change can pave lanes with the right vision.
Couldn’t tell what would happen next,
But as weeks went by good would turn to best.
Let it struggle just a little more,
Let it struggle just a little bit more.

Remember what the people said, remember what the people said,
When it’s said and done, let it go.

~The Neighbourhood – Let It Go

Eleanore Vs. Nurses

Disclaimer: While the title to some readers might sound like this is going to be a negative account of nurse experiences, I assure you it is not, and I truly hope as many people as possible read it, but especially nurses. I know it’s long, but I implore you. I want you to know that you have many times been my saviors. I simply suck at titling things sometimes. I apologize.

Hello out there,

I have been in bed all day and in and out of sleep because I have a sinus infection on top of the flu. I don’t know what it is; give me a needle to the spine, anaphylaxis, or even rip out my uterus and I can kind of handle it. But a sinus infection with a bit of a stuffy nose, a puffy eye and sorer-than-normal bones? I will whine non-stop for a week. I’m not sure how my boyfriend hasn’t smothered me with a pillow yet…maybe I just gave him the idea to, though. *ominous music*

Anyway, I digress. Here’s what I actually want to talk about. I have this amazing friend named Chris. I’ve known him for quite a while and we have a slightly odd friendship, but it is a remarkable one that I am so incredibly fortunate to be a part of. Chris, since I have known him, has only ever wanted to do one thing; okay, well two things actually. The first is to be Captain America. The second is to be a nurse. This isn’t just what he goes to school for. It’s what he craves, what he lives for, what he is fighting for. I have met many people who are passionate, but rarely have I ever met a person as passionate as him.

Occasionally, I try to help him with his homework. I am not nearly as intelligent as he is, but I am fairly talented at making it easier for people to wrangle their thoughts and get their minds turning. In a weird way, it’s kind of what I live for. I’m not sure if he knows it or not, but I thrive on the times he (and others) ask me to help in these ways, whether it’s just talking about something, or editing papers for grammar mistakes. I adore it. Call me a weirdo, but I think it’s just the greatest.

Earlier today Chris and I faced a question, that was possibly the hardest one he’d ever have to try to answer on his journey to becoming what I think will be one of the world’s greatest nurses (I’m not bias at all…nope). The question was, what is nursing? Now, to tell you the truth, I didn’t have the slightest idea where to start. Despite my young age, I have had more experiences than most will have in a lifetime. In some ways, that isn’t something I am proud of. But in many other ways, especially in times like these where I am faced with a question that is far bigger than myself, I can often times start with myself, and the stories my life has collected, because they teach me the most amazing, if not painfully learned lessons.

To estimate, I have had a hundred (if not more) different experiences with a hundred different nurses. But one that has changed my life was my experience this summer at Stanford, where I had my hysterectomy. As most people who read my blog regularly know, I hid my hysterectomy from most of my friends and my family. I also had to fight doctors for it, despite it being a medical necessity. I was hospitalized for five days, and it was five of the hardest days of my life. I am absolutely sure the pain, both mental and physical, would have killed me if not for three of the eight nurses that cared for me. Don’t get me wrong; overall, all of the nurses were great. But there were three who were utterly astounding beyond compare.

The first was Anjelica, who I assume was not much older than I. She was the first one I actually met upon my admittance into the ward after I had recovered from the anesthesia… except for the fact that I really hadn’t recovered from the drugs at all. Anesthesia, I was told, really messes with your body as well as your short term memory. I was not only given that, but also given an anxiety medication to prevent one of my famous panic attacks, as well as intravenous Benadryl to prevent anaphylaxis. I believe the medical terminology for all those drugs being pumped into me is, “getting seriously fucked up.” Therefore, I barely remember anything from the first time meeting her. I remember waking up, crying and confused because I hadn’t the slightest idea where I was, and my body and brain both felt twisted. That apparently was not the whole story. Later I was told that what had really happened, from the eyes of my childhood friend Stan, was that he walked into the room, where I was crying uncontrollably about the fact that I was terrified of being alone.  Anjelica was sitting on the bed with me, holding both my hands, trying to choke out comforting words through her own tears. I later on could briefly remember this image, only a sliver of it; but that sliver makes my heart glow like sunshine, and I am certain it will for the rest of my life.

When I finally woke up in a far less drugged state, I immediately began to have contractions like a pregnant woman (despite doing the antitheses of having a baby). My doctor warned me of hemorrhaging, of death, of infection, of just about anything that could go wrong in surgery. She did not, however, mention that I could have contractions so severe that they would cause me to scream in a hospital bed and twist in agony while nurses scrambled to find me a drug that would make the aliens in my abdomen go back the the hellish planet they came from. It was eight hours before they finally got me to stop convulsing, and I was more exhausted than I had been in any other time in my life. Thankfully, three of my dearest friends, Maya, Jared, and Brian, were there until 1 A.M. and refused to go home, which is quite impressive in itself. But they were only there because my nurse, Anjelica, ignored the 8 P.M. curfew and allowed them to stay with me on a night that I was not at all sure I’d live through.

The second nurse was Marie. She was a bit older than I, and throughout my stay she titled herself my “hospital mother.” She wore that title well. My surgery was in July, and while the hospital temperature was extremely well controlled, I found myself burning up every night. So, every night Marie would tie my chest length hair up into a bun to get it off my sweating shoulders and face, and every morning she would take it down and comb it so that I would look nice for my visitors. She would stay with me as long as she could when she had the time, because she knew that I was struggling with the fact that I wanted my mother there, but that she did not support my decision. I found out that Marie had three young kids herself, so why she wanted another was beyond me, but she was the most perfect “hospital mother” I could have ever dreamed of.

In hospitals there are nurses, and then nurse assistants, which I also had many of. However, the last few days that Marie was my daytime nurse, she always had the same assistant. A man named Mark, my age, who was extremely attractive and just as sweet as she was. After he had left my room one day, while Marie was injecting me with more Dillaudid, she said that she had made sure he was my assistant because, to quote her, “I thought you would appreciate some eye candy during your stay.” I mean, come on. What is greater than that? 

The last incredible nurse I had was Angel. Her tag said Evangeline, which I think is a truly gorgeous name, but she went by Angel. I only had her for one night, and it just so happened to be the one where during the day, a less wonderful nurse gave me a drug that caused me to trip worse than one would at a Grateful Dead concert. I was extremely upset that this had happened, because the nurse had injected me before telling me what it was, and I could have gone anaphylactic. Thankfully, I just hallucinated that I was swimming out of my body. That’s…totally normal, right?

Angel’s shift started right towards the end of my four hour hallucinatory field trip, and I immediately told her that I did not want that drug anywhere near me. She was very apologetic and promised to fix the problem, and she did in a snap. What really stood out the most though was that night, as always, was harder than the days. I am 25 years old and terrified of the dark as well as being alone in strange places. I don’t think I could even stay in a hotel alone. That being said, I told Angel that I was scared, and her solution was that whenever she was free and working on her computer in the hallway, she would sit in front of my door specifically, so that if anything happened to me, or if I got scared, she would be right around the corner. This is something I am sure many nurses would do for a child patient. But for an independent, adult woman who just had a very adult procedure, many would find me a bit strange, as they have before. Sure enough, throughout the five or six times I woke up during the night in a mild panic, every time I looked out the door, I saw her shadow on my hospital room floor. And I heard, through all the sounds of the ward, the gentle clicking of her keyboard. It felt like the most comforting sound I had ever heard; a real live angel working through the night.

When I am 30, 50, 60, even 80 years old, I will still remember these stories and what these nurses did for me. How loving, compassionate, and selfless they were without even taking one second to consider if they were “crossing a professional line” or would have better things to do then sit at my bedside while I cried about the damaged relationship between my family and I, or the anger I felt towards my eternally sick body. Anjelica did not just comfort me when I first met her. She had raw empathy, and shared in my pain. She allowed herself to feel my raging sorrow completely, and I know for a fact that it was a painful experience for her. But she allowed it. Marie, again, without any reservation at all, took the job of being my “hospital mother,” and made me feel loved and cared for. Angel watched over me while I struggled not only with sleep, but with my entire existence.

So, back to the beginning. What is nursing? I couldn’t tell you for certain, really. I believe that ultimately that question is full of a million, maybe even trillion answers, and each one would be completely different, because it’s all subjective. But as a patient, I believe that nursing is the most selfless and most trying career in the world. Doctors see their patients for a few minutes a day. Nurses spend 12 hour shifts with their patients per day. The good nurses are medically attentive, intelligent, and prompt when you need them. But the nurses that are remembered are not the smartest ones; they are the most kind ones, the ones that allow themselves to feel knowing that it puts themselves at the risk of brutal, emotional exhaustion. The nurses that cry with me are the nurses that have, as I said before, added light to my very broken heart.

Chris told me that nursing has a pretty high fail rate; so many people just can’t take the physical and emotional challenges of it, which I completely understand. I know I certainly couldn’t do a fourth of their jobs. He also told me that they have a very small chance of happy instances, and that many of the situations they encounter are not just negative, but are devastating. And again, I completely understand that. There was no happiness in Anjelica crying with me the first day I entered her ward. There is no happiness in a nurse having to watch someone’s child die, or someone bleeding out from a horrible accident. Nurses take tragedy day after day, and brave it all, but not without consequence. However, I hope that they know that while they are in those horrific situations every day, the nurses that show love towards us, the patients, are invaluable to our lives. The ones that don’t just serve our bodies, but serve our souls, may not bring us temporary happiness in the moments they are with us, but leave us with permanent happiness, because they were there with us helping, treating, loving, and feeling with us in some of the worst parts of our lives. They do all this, while asking for hardly anything back. And most of the time, they don’t get much back. The words I have written aren’t nearly enough, but I hope it’s at least a tiny something that lets nurses know how spectacular they are.

What is nursing?

To me, it’s being a hero that Captain America could never possibly match.

If Heaven and Hell decide that they both are satisfied,
Illuminate the No’s on their vacancy signs.
If there’s no one beside you when your soul embarks,
Then I’ll follow you into the dark.
Then I’ll follow you into the dark.