Widely Debated, Still Existing

Dearest readers,

Let’s start this one with a flashback: when I was 18 years old, fresh out of high school, I became violently ill very quickly. After never-ending hospital visits, I was told I had Celiac Disease … and was told little else. I went to dozens more doctors, many of which told me that Celiac disease was impossible for me to have for a slew of reasons, that it was “extremely rare,” and that the very existence of it was questioned.

It didn’t feel like the illness was up for debate – it felt like my existence had doctors in disbelief. I was told that it was more likely that I was a depressed hypochondriac, or that it was stress causing my ailments rather than a physical disease. I was directed to psychiatric help instead of physical medical help, and told over and over again that there was nothing to be done. Meanwhile, I refused to back down and continued to insist that something was seriously, physically wrong with me, and I needed help.

Now, nearly ten years later, things have gotten a great deal better with Celiac disease. More doctors are accepting that it is a true, physical disease, and that there is much to be done in terms of catching it early and treating it throughout a patient’s life.  Of course let’s not forget, the most delicious revolution in Celiac disease, all the food, recipes, and blogs that I could only dream of at the beginning of my diagnosis.

Despite the remainder of some stubborn doctors and ignorant people in the world who make fun of or deny that Celiac disease is a painful disease and not just a fad, life seems to be looking up for Celiacs, and I’m more than thrilled that my country has come a long way in understanding it (though we have an equally long way to go).

All of this is a good deal of why this month I have been left practically petrified (in the literal Harry Potter sense) when twice within this time I have been told by two different doctors that Chronic Fatigue Syndrome, another disease I have, is mostly a “stress thing,” that the medical community is not even sure if it really is a disease, and that it’s existence, and therefore my existence, is again, “widely debated.”

The second doctor especially left me positively enraged after telling me that my month-long Chronic Fatigue Relapses that inflame my nerves and fill my body with concrete were most likely panic attacks. I replied, “panic attacks don’t stay that severe for a month straight.” I explained I know this because I have mental health issues that cause them, and these episodes feel completely different. He agreed to this part, but had little else to say.

All of this has me experiencing a rough case of Deja Vu and I can’t stand it. When I was in the Emergency Room with a relapse a few months ago, the Emergency doctor completely understood that I was suffering from nerve inflammation due to my Chronic Fatigue Syndrome and had no doubt that it was more than just a stress reaction. Another doctor, ironically the same one who later gave up on me, explained to me that people with Chronic Fatigue Syndrome are bio-chemically different from people who don’t have the illness, and the disease is indeed a physical issue.

It’s confusing and frustrating as can be to constantly get mixed signals from the medical community. Sometimes I feel that I’m being told those with CFS are having a mass hallucination.  I understand that doctors do not know everything, and that autoimmune diseases especially are not well understood. I’m thankful to those committing to research to learn more about my diseases, but in the meantime, my only option shouldn’t dismissal by doctors, leaving me to my own devices to figure out how I’m supposed to live despite excruciating pain.

Let me be clear that there is no doubt in my mind that mental health certainly has an effect on Chronic Fatigue Syndrome, and that mental health issues as a whole are as real as health problems get. I have PTSD, Anxiety Disorder, and depression, so believe me when I say that I know how my body can suffer due to the symptoms of these mental health issues. However, with Chronic Fatigue Syndrome specifically, the more I live with the disease, the more I become convinced that mental health is only half of the explanation. Just as I believed with Celiac Disease, there is also a physical part, one that so far seems largely ignored.

I try to advocate for my own health as much as possible. I’m learning to do proper research on my own, to connect with others like me and to use food as medicine; and yet the fear remains that all of this is not enough. I’ve heard of people with Chronic Fatigue Syndrome ending up with organ issues or in so much pain that they lose their ability to walk almost completely.

Of course, there are clinics and doctors that specialize in these sorts of diseases, but I have very little money and only have Medicaid as healthcare, and you learn quickly that the word “Medicaid” causes people to hang up on you faster than the girl from the ring whispering “seven days” into the phone would.  So where am I left?

I wonder if in ten years, just like with Fibromyalgia, Celiac disease and other illnesses, if Chronic Fatigue Syndrome will go from “widely debated” to common medical sense. Again, none of these diseases are perfectly understood, and I still hear of people fighting doctors about them all the time, but it has gotten better.  I hope this is the case, after all, because I am already beyond exhausted of being continuously scrutinized and doubted, then left with little help.

My existence, my pain, my reality, is not up for debate.

Lonely is a Strong Word

Dearest readers,

I have been extra introspective (extraspective?) lately. I’ve gone astray in my own mind with the past, present, and future. It’s almost like the Christmas Carol ghosts are wandering about my mind, though they haven’t given me a good reason as to why (and it is not even Halloween yet, so the season is no excuse for them, either). In times such as these I’ve learned to do my best to drift through it all until my mind calms down, and, in the words of an inspiring, little blue fish, just keep swimming.

Last night specifically, one topic was on the main stage of my brain- the concept of being alone. For most of my life, I have always been alone to some degree. It took me ages to realize being surrounded by people was not enough to make a person, especially a chronically ill person, feel supported and loved. I can think of countless times when I was within a group of people, whether it be family, friends, or other, and yet felt completely empty and alone.

On reflection, it seems this was because more often than not I was around the wrong sort of people. Sometimes I was around people who were nice, though not on the same page as me, while other times I was around those who were physically and emotionally abusive. I was also with people who were honestly trying their best, but just couldn’t understand what I was going through because they had never experienced what I had, and didn’t quite know how to handle me. And so, I remained alone.

The past few years I have lost a lot of people in my life for various reasons, and it has been rough on my heart. It’s difficult thinking you are close to a person only to find out the relationship (whatever type of relationship it might be) was unhealthy and skewed. Slowly I am learning that being mistreated is not worth being able to say you have people around you, which is a useful less to learn, though going through the loss cycle multiple times  has made me feel a plethora of confusing emotions.  While logically I know I am healthier without abusive people in my life, it doesn’t hurt any less. Then there is also the fact that I have anxiety disorder and depression, both of which are talented in making me feel alienated and lonely in the worst possible ways.

All of these experiences have led me to note a defect in my own personality, where nowadays I seem naturally inclined to feeling completely isolated and like I’m doing this whole life thing solo. It’s easy to think that I have done everything by myself when now, I have no parents or family (save for my darling grandmother) to guide me, and even when I had them, they were far from helpful. However, this default can make me forget those that have worked to the best of their ability to ensure that I am not alone at all, and that just doesn’t seem fair.

My boyfriend and his family, for example, have done nothing but shower me with love since I’ve met them. Emotionally, they made me feel at home immediately, and later on gave me a physical home when I had nowhere else to go; were it not for his grandmother, I would have been one step closer to living in a homeless shelter, (though just last week another dear friend said she would have never let that happen to me, which only furthers my point).

There’s also the small pile of friends who jumped to help me move twice within six months (once in an ice storm) even though I didn’t have the money to pay them with beer or pizza, per the moving custom. There are my friends back home, like the one who has literally kept the same txting conversation going with me for a year, or another who for the past two years has always, always made the effort to call me when she can. Not to mention my Social Worker and her agency, who have brought me up from some of the darkest years of my life.

It’s true that I still do a great deal on my own, and I try to be independent as I can. But sometimes I need help, and in the most dire times, these people and the other great humans in my life haven’t let me down. At my worst, when it seemed like I was absolutely alone here in Missouri, I had several friends from back home that would always answer my calls when I was in self destruct mode, leaking heavy, painful tears.

Though numbers wise I have less people in my life now than I ever had before, I have never been less lonely, because the people I do have do so much to make me feel supported and loved. They try to help me find solutions when I am stuck, they actively listen to me when I am unwell and need comfort, and they consistently reassure me that despite how bleak my life may look, I’m never truly alone. I hope that the way I live and treat the people I care about constantly proves my gratitude.

I’m living proof that in the absolute worst of times, there is still another way, and good people to help us through them.

Hidden Hope

Dearest friends,

It’s no secret that I have had depression my entire life, and that my physical illnesses can certainly cause it to be more prevalent at times. This past month I have been battling one of the worst Chronic Fatigue relapses I’ve ever had. The relapse caused searing pain especially in my fingers, hands and arms, while also aggravating my  Carpal Tunnel. All of this made writing just about impossible. Therefore, I had a great deal of thoughts floating about my head with nowhere to go, and my mental health suffered along with my body.

Depression affects people in a variety of ways; while most of the time I am high functioning, there are plenty of days my depression feels impossible to defeat. This past relapse, however, there was much that helped me survive it all; one experience in particular was extremely helpful yet unexpected.

During the first week of the relapse I went to a concert with my boyfriend and his father. While I normally enjoy concerts, I was struggling to keep my energy up and the pain off my mind. Several times I had to leave the main venue to escape the intensity of the night. Twice my boyfriend went with me, but the third time I stepped out on my own so that he could stay with his father. I ended up sitting in the hall talking to a lovely staff member named Stacey, and suddenly I was deep in conversation with her. I admitted I was unwell, and she was kind and empathetic while I sleepily explained more about my conditions.

As the conversation continued, she explained that she knew precisely what it was like to be chronically ill considering she has several issues herself. She also knew what it was like to have a lack of support. We both lamented for a bit, before she told me that despite her serious struggles with her health, she had been married for 15 years and had seven children; that’s right- seven, which included two sets of twins. That alone made me think she was a real life Wonder Woman.

Speaking to her was inspiring; after all she had suffered through and all she still goes through, she had managed to build a beautiful life that though was not easy, was what she obviously loved. I told her she gave me hope, and had unknowingly lent a hand to uplifting me from my depression. She was altogether lovely. Hanging out with a person like myself in a hallway was not at all what I expected to do that night, but I am so incredibly pleased that it happened.

I left the venue feeling physically exhausted yet mentally refreshed. The rest of the night, as exhaustion set in, I kept reminding myself that if she could have the life she dreamed of, I could too … maybe minus the seven boys. No matter how much anxiety I have or however intuitive I think I am, life still ends up being surprising in ways I can never imagine. These experiences constantly remind me that hope is hidden in daily life. The way strangers interact with one another changes lives every second, yet this is a fact that we often overlook as human beings. I am learning to be thankful for the hidden moments in my life that bring me rays of hope, reminding me that my daily struggle is always worth it.

Of course, this lovely human was not the only one to help me through my relapse. My extraordinary boyfriend, his family and our friends all encouraged me and were wonderfully kind to me during my recovery. Warm hugs and listening ears are vital weapons in the battle of surviving chronic illness, and the people that lovingly give them will never know just how much it makes it easier for me to live. I aspire to share my experiences so that as my favorite band always says, I can spread hope like fire.

 

 

Eleanore Vs. A Doom Free Easter

Dearest bunnies,

 

Easter has always been one of my favorite holidays. It’s one of the few holidays that were truly wonderful and peaceful when I was a child in my abusive household. Furthermore, the weather is lovely, there are flowers and candies, and it reminds me of my grandmother. When I was a youngling, we would often go to my grand aunt’s home in the mountains and search for well hidden eggs and presents in their backyard, which was acres of wild forest. These are some of the only good memories I have of my childhood, which often feels like a completely different life from long ago. Unfortunately that goodness never lasted, and as I grew older, my family crumbled.

I sometimes find myself craving to go back to those seemingly perfect Easters. I miss how good life felt on those days, how we forgot about so many of the terrible things we had to suffer through as children. They were moments of true happiness that were fleeting, but not forgotten. Fortunately, this Easter was absolutely wonderful, the best I’ve had since I was extremely young, and I am so pleased that I’m able to say that. Flashback!

I spent the great day of bunnies with my boyfriend and his family. It was relaxing and fun and everything that a holiday weekend should be. We celebrated both his mother’s birthday as well as Easter, so the whole weekend was a party. Saturday night I agreed to help my boyfriend’s mother make overnight french toast for Easter brunch; we even decided to make a tiny pan for me with gluten free bread. I was extremely excited about this since french toast is one of my favorite things in all existence next to my friends, my boyfriend, pizza and puppies (the order tends to vary).

Unfortunately, I ended up being utterly useless because a migraine forced me into bed. My body was overwhelmed with pain, my eyes ached from the light, and my stomach twisted itself into an unhappy, nauseated pretzel. I was seriously bummed that I wouldn’t get to help and felt like a disappointment, but my boyfriend assured me it was alright. We’re both still learning that the number one rule of chronic illness is that when your body says, “Stop! I need rest!” You have no choice but to abide, or suffer repercussions even worse than the current symptoms. I try not to fight it much, but when I do, he kindly reminds me that it isn’t entirely my fault.

The next morning my migraine had moved out of my brain and  I was determined to be up early to help with the rest of Easter brunch preparations. I walked downstairs a little worried that my boyfriend’s mother would be upset with me. Instead, she and a few others immediately asked how I was feeling, genuinely concerned about my well-being. After assuring them that my brain did not explode like I thought it might, she informed me that she had made me my own special pan of french toast, and that she even was sure to wash her hands in between breads. I was simply elated, especially considered she had never cooked for me before.  My plate on my first Easter brunch ended up looking like this:

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And my face ended up looking like this…

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…And everything was fantastic. I told her after brunch that she had successfully made me a safe and delicious meal without any help of mine at all.  We fist bumped, and I was full and happy.

I always make a big deal about when people do these sorts of things for me, and most people don’t understand why. Well, allow me shed some light on why I feel compelled to do so. I have come to realize many people take eating for granted. I don’t mean just in the sense of having food to eat, but also in the sense of being able to eat anything they want, not having to fear fatal allergic reactions or Celiac reactions, and others being able to cook for them without second thought. Considering I have Celiac Disease, 13 food allergies and now GERD, I never expect anyone to cook for me because it just too challenging, not to mention stressful for me because unless I have watched their every move, I can’t be sure they didn’t cross contaminate or add something dangerous. I am by no means a picky eater, rather it is almost always a difference between life and potential death (and people wonder why I’m anxious!)

I am always thrilled when friends and family of friends take the challenge to make me safe food. My friends in Michigan, a few friends back home and now my boyfriend’s family may not fully understand just how much it means to a person such as myself to have people care enough about me to ensure that I can enjoy myself like everyone else in a safe and healthy way. It makes me feel loved, understood, and cared for, knowing that I’m worth the bit of extra thought and preparation to ensure my happiness.

I admit I was slightly anxious that day after I ate since the Celiac reaction sometimes takes a while to fully set in, yet two days later I have no reaction at all. I had the most spectacular doom-free Easter, and I can only hope that my life will be filled with plenty more.

To all the people who put in extra effort into making me feel safe, comfortable and loved, I am immensely grateful for you. I am one blessed bunny.  (O:)3

*nose wiggle wiggle wiggle nose wiggle*

~A Bunny Somewhere, Probably.

 

 

Eleanore Vs. Pop-Punk Perfection

Dear pop-punks, punks, metal heads, hippies, and everyone else I can’t think of because wow I’m tired,

Last night I went to my first pop-punk show in two years. It’s been far too long considering when I was a teenager, every bit of money I had went to concert tickets. I would do odd jobs around my house, save up allowance, and covet every piece of spare change I could find. My change would be safely stored in a dinosaur piggy bank until it was heavy enough to evoke a trip to a coin machine. Music has always been my affinity, my priority, and for a while, I had enough money to at least somewhat feed my obsession.

Of course, in the past two years, gaining more independence and losing some of my health meant also having far less money. Now I find myself counting pennies to save up so that I can hopefully one day live in my own home, rather than the spare room of someone else’s. Thankfully, I’ve always been fairly talented at sticking to a budget, and every now and then I have a few spare dollars to put towards something that makes me happy rather than just keeps me alive.

Most recently, those few extra dollars brought me to The Ready Room in St. Louis last night. My friend and I (another person who also suffers from chronic illness) went early and ended up snagging the only table in the place that was in view of the stage. It was also next to the free water cooler, so we immediately dubbed it the “sick girl corner.” It was absolutely perfect for us. Since I am no longer 18 and am in chronic pain from multiple illnesses, standing for four hours is no longer a talent I have. I was ecstatic that my body wouldn’t be screaming, “get me out of here!” while waiting for one of my favorite new bands to take the stage.

As I sat waiting for the headliner, I sneakily observed the crowd. I am an analyzer, a people watcher, or as some like to call it, a creeper. The diversity of the crowd brought me so much joy.  I was surrounded by people of every kind, even several with variations of chronic illness. Their presence only affirmed what I love most about music; it does not give a single fuck about your abilities or inabilities, whether you’re jumping in the front or can only gently wiggle in the back. We’re all there for the same reason, our passion for music driving us to be nothing short of ourselves, whatever that means to us.

My friends and I happily sat just out of reach of the rest of the crowd, gently bopping along to the opening bands. While at times I felt slightly bittersweet that I couldn’t be on my feet, I tried to ignore the harsh judgement of my insecurities and enjoy the show.  Finally the headliner took the stage; State Champs, a fairly new Pop-punk band that immediately won me over when Nat posted their song “Secrets” to my Facebook. I felt the explosive drums in my chest replacing the constant tightness of my anxiety. I watched everyone dance and jump, hands in the air, fingers reaching for infinity. Despite having little energy and my back aching, my friends and I made our way into the crowd. well, okay, at least to the back of it.

We entered the main area, trading the light of the bar for the darkness of the venue, splattered with blue and white lights that danced in time with the music. The voice of the singer, Derek, was uplifted by the voice of hundreds of people singing along with him, myself being one of them. I couldn’t crowd surf like many people did, nor could I jump! jump! jump! as we were directed to. Instead, I ferociously wiggled and danced with fervor. I bounced and I screamed and I sang as loud as I possibly could, feeling as if my vocal chords might implode and not caring if they did.  During their song Slow Burn I sang especially loudly with the chorus:

I hope it all comes back again,

I want to get stuck in your head like ,

Everlong playing on the late night radio.

I closed my eyes and as I moved my sickness was melted away. My pain was blasted into oblivion by drums and guitars and bass. I listened, I sang, I danced, and in that moment, my life was perfect.

 

Every day I face challenges that sometime feel too monstrous  for me to conquer. Some days I feel strong enough to fight back, determined and stubborn to change it all for the better. Other days I wake up feeling already defeated, sick and hurting. Regardless, moments such as these remind me what I’m fighting for, and force me to acknowledge that the battle is always worth it, which I appreciate since chronic pain can make it easy to forget. I am reminded my existence doesn’t always have to be painful and that my happiness doesn’t always have to be extinguished. I am working on collecting these moments and keeping them close to my heart so that when I am defeated, I can look back and realize that no matter how tiresome and difficult my life feels, it still contains a few perfect, untouchable moments; and I am just so incredibly grateful to be alive for them.

We set a fire that both ends with our best lines,
And best intentions.
Let go of what we know, and make tonight our reinvention.

~Slow Burn – State Champs!

Eleanore Vs. A Battle With a Calendar

Dearest human thingies,

I have a profusion of hopes for my life; even on my most unwell days, I still hold a light inside me. Some days it is just the flicker of a struggling candle, while other days it is a beacon of light that encourages me to move forward.  Either way, it is always there, whether it is whispering or shouting. One of my biggest goals of all is to become a true writer. As I’m sure you are aware, that’s not a quick or simple goal to accomplish. I’ve found some great guidance here and there ,especially from WordPress University; a guide I didn’t even know existed until I accidentally stumbled upon it. It was like finding out Jackalopes truly were real (I still have my hopes up for that one. Don’t judge me, internet).

One piece of advice I have come across in regards to motivation and time usage is to create an editorial calendar. You know, a calendar of what I write on what day to keep me on a steady pace towards my dream. I thought this was a novel idea, so I printed out a pretty little calendar with a donut design (I’m an adult, I swear!) and was thrilled to create my plan. Later that day, before I could work on it,  I became exhausted, my body hurting and aching while my mind fell into a haze, and I resigned myself to my bed after a day of running around and helping my adoptive mother with all the things.

This has lead me to a conundrum that I feel has been an impediment in my life for as long as I can remember. It is extremely hard to stick to a schedule of any kind when my life is ruled by my health. Even planning what to do in a single day sometimes doesn’t work because I think I had more energy than I truly do, and I’m left frustrated and unproductive.

I would love to write out an editorial calendar fro the next three months, and I do think it would help immensely. But how does a schedule work when I must constantly rearrange it last minute because of my health on any given day? This is a large part of what I have such a hard time finding any steady work. I am an incredibly hard worker and I am extremely motivated; however, regardless of how motivated I am, if I am in too much pain or too unwell, that takes priority, and nothing else matters.

Of course some would say, “just work through it!” or “just take more pain meds!” But they don’t understand that I already am working through my physical and mental pain every single second of every single day. Some days it is  just too much. Some days the pain in my body is too severe for me to move around my home, or my chronic migraines are too severe for me to think through. I have better and worse days, but the pain is always there, and I do indeed work through it. But even for someone like me who has become accustomed to the feeling of chronic pain, there is a limit. There’s only so much one person can take, yet almost daily I cross that line because after all, I still need money to survive.

No matter how much we hate it or refuse to admit it, for those of us with chronic illness, our health comes first. Even when we try everything in our ability to control or ignore it, even though we sometimes win, we nearly always end up paying for it later. Of course, this doesn’t mean we can never do anything. I simply refuse to let my illness take over my entire life. If anything, I have to maintain the belief that there must be a balance.

For people such as myself, there must be a way for us to be able to plan, organize and work while still remaining flexible enough to care for ourselves as we need. For each of us, this means something different depending on what exactly we suffer from and what we need in regards to our care. No one chronically ill person is like another, even if we have the same illnesses, but I’m sure many others share this same conflict.

My hope is that despite my ongoing frustration and struggle, the realization that I am in need of a particular way of weaving work into the rest of my life will only motivate me to create one that is both healthy and productive so that I’ll be able to succeed in the way that is most fitting to my situation. I may not have started out with a very good life; but I am a stubborn little asshole who is determined to create one without causing a great deal of harm to my well being. There are many people that do sacrifice their health in order to work, and I know how hard that is as I have done it myself. In reality, no matter how sick a person is, they still need to make money in order to survive. I’ve been in that situation most of my life, and I currently still am. But I am so painfully unhappy with the way things are, and more than motivated to change it. I’m not sure exactly how just yet, but I’m working on it. And dammit, I will figure out how to plan my editorial calendar!

Here’s to my future, and all of yours.

If you are a fellow writer who is slowly yet surely building your blog, check out the free WordPress Uni. I love it, and it is wonderfully insightful! Click here to be magically transported! Woooooooaaahhhh!!!

Let’s make this happen, girl,
We’re gonna show the world that something
Good can work, and it can work for you
And you know that it will.

Let’s get this started, girl,
We’re movin’ up, we’re movin’ up
It’s been a lot to change, but you
Will always get what you want.

~Something Good Can Work – Two Door Cinema Club 

Eleanore Vs. Trust (Part One)

Dearest readers,

There has been so much on my mind and heart lately but very little has been able to come out. I believe part of this is from exhaustion, part from my anxiety being intolerable for reasons yet to be described, and part may just be true Writer’s Block. Regardless, I am growing tired of this war between my brain and I. Thankfully, it seems today I can finally compose something in full.

Yesterday, as I drove a whole four minutes to visit my darling friend Amanda, I thought about something she said yesterday about trusting doctors and knowing who really has the best in mind for her. I know this feeling well; as someone chronically ill, I am constantly having to explain to doctors how my illnesses work together since having as many as I do all at once (especially at my age) isn’t exactly standard. I am thankful for the doctors I have had who were compassionate towards me and tried to assist me as best they could. However, now and then I have also experienced the opposite, and many times I experience something in the middle of two extremes.

One of the first blogs I published when I started Sickly Stardust was a two part post about my battle with my facial maloclussion. To reiterate, a facial maloclussion is a genetic defect that caused my face to become malformed. It effects the shape and function of my jaw, my teeth, my speech, my ability to breathe and eat, and causes chronic pain in the shoulders, neck, jaw, and skull.  I was born with the condition and have struggled with since (You can read the two posts by clicking the links at the bottom).

When I was 24 I went to the University of San Francisco to meet with an orthognathic surgeon because I had been rejected by at least six other orthodontists who didn’t quite know what to do with my rare condition. After speaking to a knowledgable and kind doctor, he had my case reviewed by a panel of experts. Since it was a complex and strange case, he thought presenting it to the panel would be the best way to decide a course of action.

In the end, They decided that I would not benefit from the extensive orthognathic surgery because they were concerned it would actually increase my pain rather than make me healthier. They were also unsure if my bones could take the breaking and manipulation needed to complete the process because my bones have been weakened by my Celiac Disease. Ultimately, they told me to come to terms with the fact that the only fix to my maloclussion was something that my body couldn’t handle, and that I would benefit most from finding a pain management therapist to learn to live with my condition.

Fast forward to a few months ago when I had one of my episodes in which my jaw and teeth go into turbo-nightmare mode and cause me great suffering. My entire right side of my face felt swollen and was riddled with pain. It somehow felt that my right side of my face had been twisted. I was in complete agony and scared because this episode was far worse than any I had prior.

I went through several dentists until I found one truly spectacular one willing to help me. She did an extensive check up and talked to me at length about my maloclussion. For the most part I was in good shape, though she did see a small dark spot in my jaw which she suspected may be a weak spot in my jaw bone. I thought, “a weak spot already? I’m only 26. This just isn’t fair…I suppose the UCSF doctors were right.”

This lovely dentist ended up sending me to an orthognathic surgeon here in St. Louis, who, after pondering over my X-rays, told me that I absolutely did need to have the surgery done because I was only going to get worse with age. I told him about the decision made by the panel at UCSF, but he disagreed and said there was absolutely nothing to worry about. He then gave me the number of an orthodontist he was certain would take me while on MedicAid, and sent me on my way.

After the appointment I felt wildly conflicted. Part of me was terrified to have the surgery while the other part of me was ecstatic at the prospect of having one of my many illnesses cured. It would have a significantly positive impact on my body and my life, and if it reduced my pain long term, there was no reason for me to not have it if I could afford it. Still, the idea of having my jaw purposely broken was frightening.

As per the surgeon’s orders, I called the orthodontist as soon as I returned home. I explained to them the situation and asked for an appointment, to which they instantly replied, “we don’t take adults on Medicaid.” The woman quickly hung up on me. My anxiety surging and tears flooding my eyes, I called him right back, and he said to try another place. I immediately did, only to be told that Medicaid does not assist with orthodontics for adults, no matter the case. I hung up and cried for hours.

For a second, I had my hopes up that I had a fighting chance. I felt a light, thinking there was something to be done about one of the worst parts of my health. Just as quickly as it was given to me, it was instantly taken. I started to think about who was right; the surgeon here or the doctors at UCSF. What if they were correct in saying that my body couldn’t withstand the surgery? Maybe that spot of weakness in my jaw was proof. What if the surgeon here was wrong, and didn’t see the whole picture? Who am I supposed to trust with not only my body, but the entire look and function of my face and jaw? And, what’s more, if I can have the treatment, will I ever be able to afford it?

To be continued…

It feels like I only go backwards, baby,
Every part of me says go ahead.
I got my hopes up again, oh no, not again,
Feels like we only go backwards, darling.

Tame Impala – Feels Like We Only Go Backwards

To read more about my facial maloclussion, click here for Part One and here for Part Two! 

Eleanore Vs. Wandering Thoughts in Wichita

Dearest readers,

I have gone on an unintended two week hiatus from my blog. I have found that in general my life is always better when I’m writing regularly, and since I have not been able to do so I have felt a piece of myself missing. The reason for my absence was largely due to the fact that right as I was starting to find my groove in life, working towards each of my most paramount goals, I was suddenly floored by several bouts of sickness that made doing much of anything exceedingly difficult.

First it was strep throat followed by severe GERD. After wrestling with different medications and adjusting my eating habits even more so, I was able to get my GERD mostly under control. I thought that I was going to be able to resume my hard work until I came down with an Upper Respiratory Infection, and for all my stubbornness I finally had to stop absolutely everything and rest. I became so weak I could hardly walk and struggled to breathe with the weight in my chest from the infection, and ultimately had to call upon a dear friend as well as my boyfriend to assist me in the Emergency Room. Despite it all, I am happy to say that I am now in Wichita, Kansas for the week, able to breathe and enjoying a much needed rest from the insanity that has been my life.

Through all this temporary sickness piling atop my chronic illnesses that I battle each day, I started to think, “I am so tired of dealing with illness and being sick. I don’t want to think about it anymore or have anything to do with it.” This thought was awfully distressing considering I have devoted myself to this blog which is mostly about living with chronic illness at a young age. This brought me to an inner conflict that started to break me.

A few weeks ago I had one of my many existential crises and I flew into a mental frenzy. I wondered if it was healthy for me to focus so much on my chronic illnesses and write about it as I had desired to for so long, and if this was really what I was meant to do. My goal had always been to write in order to help both myself and others like me, but I wondered if that was what I was really accomplishing. If writing was not what I was meant to do, have I wasted the past two years on something that would amount to absolutely nothing? I felt like I had no direction, the future I had seen myself so clearly in now turning into a jumbled, blurry mess.

I ended up calling my friend Brian to talk to him about it, explaining what triggered my crisis and where it had lead me. I told him that I wanted so badly to make something beautiful out of all the suffering I have endured throughout my life, but I also needed to survive, and maybe finding a “normal” job was the best option since I nowhere near surviving right now. I explained how exhausted of suffering and how the peaceful, more composed life I dream of always seem to fall short of my hands. After my explanation, he repeated to me one of his catch phrases that he has told to me a thousand times before. “I think you are doing the right thing,” he said firmly, “but the right thing to do is sometimes the hardest.”

Here I sit in a new friend’s lovely home in Kansas. His home is lovely and comfortable and filled with things he and his fiancee love, included their sweet dog Thunder. I am thankful for the opportunity to visit a new place, but every time I meet someone my age who seems to have their life together, I can’t help but think, “this is all I’ve ever wanted, won’t it happen for me too?”

Some people in life are extremely lucky. They grow up healthy in loving families,  go to college, find stable jobs, and the rest of life continues on. Others are less fortunate and consistently fight through life. I haven’t the slightest idea what makes the difference, or how one life can end up so unlike another. In my writing I reaffirm that those of us who suffer from abuse, chronic illness, or a lack of stability in the most important parts of  life a battle are never less deserving of happy. We can still have fantastic lives, however it does take more time, energy, and resilience to get to that same point others seem to come to so easily. For all my desire and jealousy, I easily forget that I too am on my way. I may not have very much money or even a home, but nevertheless, I am on my way.

There is a painfully cliche proverb used in times such of these, and if you know me at all, you know that I have no tolerance for finding them in most writing, especially my own. Yet every now and then, I come to a point in my life where I think, “damn. Confucius was onto something,” and I have no choice but to use one of them. So here it goes:

It does not matter how slowly you go as long as you do not stop.

I hope to get back into the regular swing of my life once I return from vacation, and most of that includes working towards the future I yearn for. For now, I hope to enjoy my short visit here with my boyfriend, good friends, and the lovely warm weather.

This is gospel for the fallen ones,
Locked away in permanent slumber.
Assembling their philosophies,
From pieces of broken memories.

Their gnashing teeth and criminal tongues conspire against the odds;
But they haven’t seen the best of us yet.

~This is Gospel – Panic! At the Disco (Piano version because I love it) 

 

Eleanore Vs. International Women’s Day

Disclaimer: This was written yesterday but I didn’t have the chance to post it. Oops! 

Dear wonderful rainbow of readers,

Today is one of my favorite holidays; it is International Women’s Day. Personally, I say the day is extremely needed as most other days ,especially lately, seem more like, “women should crawl into a cave and sit there until we want to fuck them and/or impregnate them…day.” It makes me furious. In fact, how women are treated in general drives me absolutely insane. As an unknown person said a while back, “you will never in the history of the world see a room full of women deciding what a man can do with his body.” Yet we see the opposite nearly every. single. fucking. day.

Over a hundred years later we as women are still fighting to prove that we should be treated as human beings. It’s exasperating to say the least. Not to mention, how the fuck is it that men think they’re superior to us when we LITERALLY made them?  *pauses writing to throw the couch out the window* anyway. I could go on and on and on, but this is not the main point of my post today. Instead, this post comes to you in two parts:

Part One – Kicking Ass On Women’s Day

As my followers know, due to my health I have struggled to find steady work. I work ten hours a week for two psychiatrists as their office manager, I dog sit when summoned to, and I just recently started freelance transcribing, which pays not nearly enough, but I do because I need all the money I can earn.

A while ago, another doctor in the clinic I work in expressed interest in hiring me. Today, he thankfully made it official, and I was quite proud of myself for making this happen. However, I realized that since I would have to take taxes out as a contractor, I would not be making as much as we had agreed upon. So, in a moment of  kick-ass bravery, I asked for a higher pay, and to my complete joy, my new employer agreed (after a bit reluctancy, but still). For someone who is chronically ill and chronically depressed with anxiety disorder, as well as being a human has been told her whole life by both the majority of her family and others that she is worthless, this is a tremendous accomplishment.

I have never been able to work “normal” jobs. By normal I mean with steady hours and steady pay. Instead I have mostly freelanced, whether it was being a maid, a dog-sitter, a babysitter, or an office manager. I have always had to instate my own pay yet it was never anywhere near where I wanted, because I was always afraid that if I went too high I would not be hired at all. At nearly 27 years old, I finally had the courage to ask for what I thought my work was worth. And to be completely transparent, it was the greatest feeling in the whole entire world to finally stand up for myself and make someone else see my worth.

So, today has been a pretty awesome day. The last few weeks my depression and anxiety have enjoyed munching on my poor brain, and several times they’ve caused me to break down entirely. All of this as well as my physical sicknesses have weighed me down the past few weeks, causing me to feel hopeless and incapable. Today, I find myself filled with hope, beaming over my tiny victories. I’m okay with it.

Part Two – Persistent Women

A few months ago Elizabeth Warren gave a fabulous fuck you when she was silenced on the senate floor and then continued her speech via live streaming. The phrase, “nevertheless, she persisted,” was spoken by Mr. McConnell, the one who lead the decision to cut her off. Spoiler alert: it backfired majorly. Instead of an ignorant lesson, it became a feminist battle cry. This phras empowered us. As someone who is not only a persistent woman but has grown up around them, I would like to acknowledge the women I am inspired by, who despite being shut down, shut up, beaten and relentlessly abused, persist.

My grandmother Maria

For anyone that knows me even a little, it should be no surprise that my grandmother tops the list. After living through the horror of WWII in Austria, surviving typhus while watching several family members (including her mother) pass away from it and immigrating twice, she then devoted her life to raising my siblings and I. She still gushes nothing but love and kindness.

So many people attribute their anger to misfortune and suffering in their lives. My grandmother suffered more than most would in three lifetimes, yet still she carried on, loving and being completely selfless for the benefit of three children she did not have to care for. Everything that she is contributes to who I am today. To say I am thankful to have had her light in my dark life is more than an understatement. There are hardly enough words known to mankind that would allow me to properly articulate how much this woman means to me. She is my heroine, my everything, my savior. I love her more than my heart can tolerate.

Sissy

My older sister is one of the most resilient women I have ever known. She has overcome horrible abuse, yet every day fights to not allow it to define her.  Every single day she fights multiple forms of oppression, past and present. She is the very embodiment of power and persistence.

Furthermore, throughout our lives she constantly had to overcompensate for my mother and at a very young age had adult responsibilities thrown at her feet. She had little help, yet she never abused me or caused me to feel unwanted. She put as much effort as she could into my care, and still often does. She was the one that came when I screamed in agony. She was the one that prayed over me while I wanted nothing more than to die just so that the pain terrorizing my body would stop. She was the one that made me food and brought it to my bed when I was too sick to walk. She, like my grandmother, saved me from the suffering I had no choice but to survive.

My Adoptive Mothers

My unofficial adoptive mothers took me in last year when  I had absolutely nowhere else to go. I can’t even bring myself to think about where I would be without them opening their homes to me. They both have been through their own struggles and yet, much like my grandmother and sister, still find it in them to care for others and to love me as one of their own children. Though they have three children and several grandchildren of their own, they still put effort into making me feel less like a lost orphan.

Momma Rose especially makes a point to remind me that I am intelligent and beautiful and everything I was always told I wasn’t. After a lifetime of guilt and self hatred, my adoptive mothers are two of the people that are helping me pave my way to a better future.

My Sister from Another Mister (and Misses…but Whatever) 

Lastly, Cassy is another impossibly strong woman that I am constantly thankful for. Some days I am convinced she is entirely super human. She has had to fight for every single thing in her life, and even when she loses, she refuses to give up. I have never seen someone so determined in my life; for every obstacle Cassy encounters, she obliterates it.

Just as the women above, despite her own suffering, she has never used it as a justification for cruelty; she has helped me in more ways than most ever have, and has been at my side through several of the worst parts of my life. She is intelligent and thoughtful and everything that I believe a person should be. I admire her greatly for her courage and persistence. She is often understated, but  calling such a spectacular person on of my best friends is a privilege that I hope I never seem ungrateful for.

To all the courageous, beautiful, and persistent women in my life and in the world, you give me hope.

The women whom I love and admire for their strength and grace did not get that way because shit worked out. They got that way because shit went wrong, and they handled it. They handled it in a thousand different ways on a thousand different days, but they handled it. Those women are my superheroes.

~Elizabeth Gilbert 

Eleanore Vs.Rebellion Nose!

Dearest readers,

Yesterday I went to get my monthly haircut and promptly took a selfie because I felt shiny as fuck. I also wanted to take a picture of my hair looking nice before the severe storm came and had the chance to ruin it. I think I look pretty okay (and not too sick) in the photo; my hairdresser did a truly fabulous job with my hair, but a tiny spot in the photo caught my eye . That little red bump on my nose that looks like a pimple but is actually not; it is a permanent scar from one of my many failures.

When I was 20 years old I began to slowly come in to myself and decided that I wanted to start on what I had hoped would be a journey of getting lots of tattoos and piercings. I decided to start with my nose (because it already stands out so much it may as well be embellished). My friend had it done a year prior and had no problems, so I thought that it would be just as easy for me.  A quick shot, a little blood, and I’d be on my way.

Of course, because I am me, I had no such luck. I went to the mall to a shady little kiosk run by a woman with a solemn face that expressed she had no interest in anything including piercings. She drew a black spot on my nose, then told me bluntly, “don’t. move.” Those were the only words she spoke to me. She then shot my nose with the piercing gun, and naturally I flinched because it was loud and…well…piercing. (I’m a writer, I swear!) “You moved!” she scolded. She pierced me again, and again… And then I passed out.

Though I was unconscious I am sure I fell from the raised chair onto the tile mall floor. I woke up in a sweaty, nauseated daze to the woman and a security guard look down upon me. The guard was noticeably worried while the woman still had yet to express a single emotion. As always, my Vasovagal Syncope was triggered and I ended up being carted off in an ambulance. This was also before I knew I had the disorder at all.

At the time I was living with two family members who were also the ones who were the most abusive and dysfunctional. I did not tell them I was going to get my piercing because I knew they would have prevented me from doing it after demeaning me relentlessly. Of course, I ended up having to tell them since I had to be fetched from the hospital.

When I arrived home it was just as I predicted; I was screamed at, scolded, made fun of, and humiliated thoroughly. I was still feeling sick from my episode and was feeling worse by the moment. I had fallen to the floor unconscious in front of a number of strangers and yet somehow they thought I needed to be made to feel worse. I went to my room, barricaded the door (as I often did because it is a trick you learn living in an abusive home) and cried for several hours. I felt frustration, guilt, shame and hatred for my entire life. Dramatic, I know.

This experience was only one example of many instances where I tried to do something seemingly normal for my age and it turned out terribly wrong because I am just not like everyone else. My chronic illnesses love to remind me that I am unique, to say the least. Now, seven years later, I still find myself often focusing on all that I can not do. it’s depressing and exhausting to realize multiple times per day that things others don’t even have to think for a second about are difficult or impossible for me for one reason or another. Whether it is taking a bath, lifting something, eating regular food, dying my hair or any of the other numerous things I either  cannot do or have to work extra hard to do, I never get used to my can nots.

It is incredibly easily when dealing with chronic illness to be sucked into the world of can nots. It happens to me pretty much on a daily basis, and it does me absolutely no good. It does not help my anxiety, my depression or my physical illnesses. Especially in my worst bouts of depressions, my inabilities seem to overtake me completely; and they leave me feeling positively depleted.

I did not have a healthy childhood or a healthy teenage life. I was also not a healthy young adult and I am not a normal adulty adult now. Through each stage of my life, there were parts of life that people of my current age should be able to experience, even if it gets them into a little bit of trouble. My entire life, I was too sick to be edgy, rebellious, or mischievous. Though I still had a few late nights and I did sometimes lie about where I was, I always paid for it, not because I was caught but because my health would constantly betray me.

BUT THEN.

I remember that I rebelled at a very early age against my abusive family and refused to either be like them or be permanently damaged by them. I recall every illness I’ve had to fight off and every hospital stay I’ve  had to get through without proper support. For every bully and abuser I have had, I eventually ripped  myself away from them in hopes that I would find a healthier life, even if I had to fight extremely hard for it. I’ve fought against depression and anxiety for years, and every day I am alive is a day I have won, even if I can barely get out of bed because of it. I am constantly rebelling against that which does not positively serve me.

If there is one thing Star Wars has taught us, it’s that badass rebels come in all forms. Some are tattooed and pierced, others in sensible sweaters or suits. Some are space cowboys while others are alien princesses. Some with hidden illnesses while others are in wheelchairs. Most are a combination of all sorts of aspects that make up who they are on the inside and outside. Regardless of what we can’t do or what we look like (or don’t look like, in my case) what we can do is so much more important. It can be difficult to remind ourselves of that, but no matter our restrictions, our capabilities still matter. They matter so much, and they can still be invaluable to both our lives and other’s. We can all be rebel fighters of our own lives.

I’ll be there for you, Jyn. Cassian said I had to.

~K2 the sassy robot