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. Coping with Dementors

Dearest readers,

I had a truly lovely and perfect weekend. Afterwards, I came home to instantly fall into a pit of depression, and those two sentences don’t quite make sense together. You see, depression is a difficult illness for approximately five billion reasons. For me, one of the most irritating is that I have found that even the best days can still end with me feeling dreadful, because (much to my frustration) there is not always correlation between my mental health and my experiences.  While everyone has off days, for many people good days lead to good moods and bad ones lead to…well…bad ones. It makes perfect sense. Depression, however, enjoys being nonsensical.

I have tried to create a system to help myself when I feel utterly hopeless. Sometimes it works and sometimes it doesn’t, but I always try to give it an honest shot. It is mostly comprised of distracting myself with things I enjoy doing, talking to my friends and resting until the Dementors (more commonly known as depression) in my brain start to move on. When all else fails, I turn to a crisis hotline. The weight of my depression last night became too much, and I felt myself slipping, so I made the decision to call.  A kind woman answered and after the initial questionnaire asked what prompted me to reach out to her. She listened through my entire soliloquy patiently.

Towards the end of the conversation we talked about how I might cope with this illness that I often feel I have no control of. This part of the conversation can sometimes be frustrating. I become annoyed because it can seem like very generic coping mechanisms are introduced to me, and though the others are trying their best, it doesn’t always help. I was surprised when the first thing she asked me was not, “what do you usually do to help yourself?” like I had experienced so many times before, but rather asked, “when was the last time your depression was this severe to the point of complete hopelessness?”

I was slightly stunned by this unexpected question. After a moment of thought, I replied that the last I remembered was two Thursdays ago, when I felt like a I was crumbling completely. She then followed with, “so it has been a little over a week since you last felt this terrible. That means that in between that time, there were parts that were far less horrible, and some that were even good.” This was truly a revelation to me. I had never thought of it this way, but she was completely right.

I admitted how wowed I was by her take on the matter, and that I had never had it presented to me in such a way before. I continued on to explain that because I also have PTSD and Anxiety Disorder on top of my depression I struggle to stay in the moment. We both agreed that since I cannot stay in the moment, I can try to look forward and back at more positive things rather than negative experiences that only worsen my mental health. If my mind demands to leave the moment, I can at least have some say in what it is going back to revisit, or what it is looking ahead towards. I can have at least a little more control. I really adored this sort of thinking, because it wasn’t about forcing me to get over it or cheer up, but instead encourages me to better navigate the current predicament.

When I hung up I started to feel that some of the monstrous weight of my depression had been alleviated. I wasn’t completely okay, but I began to feel hopeful about the fact that I had been given a new, truly effective way to handle my depression, and felt a spark of excitement as I contemplated how I would go about using them in the future.

Yesterday I described depression to the woman on the phone as if I was sitting in a house that was melting around me. It feels like there is nothing I can do to save myself or the house; I am completely stuck.  While my depression sometimes does lead to complete apathy, most of the time it comes with an array of emotions. It is comprised of impossible exhaustion, crippling sorrow, and overwhelming fear that seeps deep into me. I despise how I am during my depressive episodes and I would do anything to get avoid them. However, I must gently remind myself that  improving from any illness is a journey. I have had my depression as well as most of my illnesses the majority of my life; most of them are incurable. I may have depression for the rest of my life, and I may never be fully cured of it. But if I can learn to cope with it even at its most intense and move through it, then I have a fighting chance at life, with or without my mental illness.

Note: Since childhood I always described depression as an insidious, black, shapeless thing that takes over my mind. It only occurred to me last week that the closest thing that is similar to this is Dementors – I will probably use this imagery in my writing for the rest of forever. 

I missed the last bus, I’ll take the next train,
I try, but you see, It’s hard to explain.
I said the right things, but act the wrong way,
I like it right here , but I cannot stay.
I watched the TV, forget what I’m told,
Well I am too young, and they are too old.
The joke is on you, this place is a zoo,
You’re right, it’s true.

~Hard to Explain – The Strokes

 

 

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

Eleanore Vs. A Movie Theater Floor

Dearest Junior Mints (and Senior Mints, I am against ageism),

I generally dislike weekdays (as 90% of humans probably agree), and last week was far from an exception. Between battling my anxiety,being devoured by depression, and still having to get regular life things done, I was depleted by Friday. Thankfully, the weekend, as always, was my savior. I was happy to see one of my dearest friends, Holly, and catch up over tea and coffee. Afterwards I set off to spend the rest of the night with my boyfriend and have a calm, easy night since we were both tired. Plot twist: that did not happen.

We decided to see John Wick, also known as Keanu Reeves kicking all kinds of ass. We made our way to the theater just the movie started. I never saw the first John Wick, but I soon learned that a lot of people needed to die because of a car and a puppy, and that I was completely okay with that.

Halfway through the movie I began to feel ill. I suddenly became severely nauseated and overheated, which nearly always means that I am going to have a Vasovagal Syncope episode. For some reason I was hoping that the thing that always happens given these symptoms would somehow not, so I left the theater without telling my boyfriend and scrambled to the bathroom. I hoped and prayed that it was a false alarm and that I’d simply return to the movie and everything would be A-Okay.

Things ended up being super not okay; I did not make it to the bathroom and quickly realized It was indeed Vasovagal Syncope trying to drag me to hell. I fell onto the ground (thankfully pulling my jacket to the floor before falling so my germophobia would at least be somewhat quelled) and started to lose my vision as I wretched like the exorcist girl, dry heaving and moaning. Sexy, right? I yelled for someone to help me and soon staff members began to surround me, asking what I needed. I assured them that this was actually somewhat normal for me, and that I didn’t need an ambulance, but I did need water, ice and something to vomit in; the dudes abided.

Many times these episodes occur in the middle of the night and I am alone, or the person I needed was already there (though not always helpful). Since my relationship is still very new, I forgot for a moment that I should probably tell my boyfriend that I was on the floor outside the theater. I tried to call him, but it didn’t work, because he is a normal human being who puts his phone on silent when in a theater. I asked a staff member to fetch him for me, which now that I think about it was probably far more scary for him than it would have been for me to tell him that I was unwell in the first place before I ran off. Oops (Sorry, boyfriend).

He was noticeably worried when he came out and promptly sat on the floor and grabbed my hand. I was not only fretting about my current physical state, but about my relationship as well, and my anxieties about it were not making me feel any better. There was only one other instance I had this exact same situation happen in a movie theater with a friend. After my illness allowed to make my way out of the theater I was taken home, and he never spoke to me again. I was terrified the exact same thing would happen which worried me because although it might seem odd, I really fucking like my boyfriend.

Contrary to my worst fears, he was incredibly compassionate and calm the entire time, and ended up handling the ordeal better than I could have hoped. I convinced everyone for the third time that I would be okay after laying on the floor a while, and they left us to wait it out. Of course, laying on the floor isn’t quite what you’re supposed to do in a movie theater, so we looked just a teensy bit out of place. People walked by staring, some asking if we were okay, to which we always replied that we had already received help and that we were thankful for the concern. After a few times my boyfriend said, “The next time someone asks I am going to tell them we’re on a picnic.” I told him that he absolutely should do this, but I honestly didn’t think he would. Moments later a kind woman passed by and asked if I was alright, to which my boyfriend nonchalantly replied, “oh yeah, we’re fine, we’re on a picnic!” She looked at us with an awkward smile and walked away. Though I had all my energy drained from me because of the episode, was embarrassed, frustrated with my body, and still unbearably nauseated, I laughed wonderfully hard. He did too; and it made everything a bit less painful.  The people at the theater were all wonderfully helpful, and towards the end returned to give my boyfriend free movie tickets since we never got to see the end of John Wick. I hope the dog made it.

Back at our rebel base I was given soup and gatorade while I tried to recover. I tried so hard not to, but I couldn’t help but feel guilty. All my life it had been constantly drilled into my brain that my illnesses, especially when they cause a bit of unexpected drama, are entirely my fault. I carry a heavy heart every day thinking that if I did this or that just right, maybe these things wouldn’t happen to me. I began to tear up as my boyfriend hugged me,  reassuring me over and over that it really wasn’t my fault. I was starting to almost believe him.

If anything, the one bright side is that the kindness from the movie theater staff and from my boyfriend really helped make a miserable episode infinitely better. Compassion and empathy can make many some situations, no matter how dreadful, far more tolerable. Their kindness didn’t make me any less nauseated or raise my blood pressure to a safer level, but it was one of the few times that I truly felt like I was not blamed for ruining someone’s night or made to feel like a freak. I was made to feel like a regular girl who is a little different, but still important and cared for. This whole experience made me think that maybe I can still have an amazing life even if my road is just a bit bumpier than most others. Maybe it doesn’t have to be my fault or anyone else’s when these things happen, and I can learn to accept even the most frustrating parts of the life I’ve been given.

I think, given enough support and kindness, that can absolutely happen. I’m well on my way.

Teller: Does the dog have a name?

John: No.

~John Wick – Chapter Two 

Eleanore Vs. Better Vs. Easier

Dearest humans,

Earlier today I was sitting in my car waiting for my doctor appointment underneath a gorgeously blueberry sky. Living in Missouri I deal with an abundance of gloomy weather, something I am not the slightest bit fond of. This week, much to my pleasure,the sun has decided to eviscerate our gloom.

Yesterday a dear friend posted in his blog, The Dark Side of Neverland. His life has not been an easy one and he has faced some of the most difficult obstacles a human life could present. In his last post, he wrote about his past battles that lead him to where he is now; though it seems in some way his life has improved, he is still struggling in many others. This reminded me of something that I learned a while ago through my own life that I now constantly keep in mind; life getting better and life getting easier are hardly ever synonymous. 

In my own existence this has been proved multiple times. Currently I have less than I’ve ever had in my adult life. However, as my Momma Rose likes to remind me, my life is pretty great considering what I have come from. Mentally I am far healthier than previous years and though my physical health is a constant struggle, for the time being I have Medicaid to give me some assistance. I don’t have my own home, but my adoptive mothers’ home was opened up temporarily to give me more time to figure out my own way , and that has been an enormous blessing.

The last few days my depression was starting to get the best of me. In my birth mother’s voice it tells me that I am worthless, a nothing, and a failure that will never get anywhere. It tells me I’m a burden on those I love and that people in my life are sick of me, so I shouldn’t bother to build relationships. I was feeling the heavy weight of this mental venom, until Momma Rose assured me that each goal I strive to reach is  not attained quickly. I tend to forget how hard it is to build an entire life from scratch. Turns out, it isn’t exactly easy.

Most nights I go to sleep feeling as if I have failed or that I should have done more to help myself get out of my difficult situation. I am trying to get better at reminding myself that these things take time, and that I truly am doing my best. Believing it is another story, but I hope to get there soon. It is an important lesson to learn that life getting better does not mean it gets easier, because expecting that chain reaction can lead to frustration and discouragement . Often times, life getting better means it becomes harder. There is more to accomplish, more to focus on and more at risk. Since I have anxiety disorder and PTSD, the increased risk especially terrifies me. I’ve noticed over time that my anxiety actually increases the happier I am. What kind of fucked up shit is that, brain?!

It seems that one way or another, life is never uncomplicated. However, the reasons for the complexity of life varies. I love the days that I am exhausted and busy because I am spending time with people I love, writing, and adventuring about. The days that I feel exhausted because my life is too much to handle or because I am in agony from my chronic illnesses are the worst. There is certainly a difference between content exhaustion and the kind that causes suffering. I experience a good deal of both.

Life is a strange adventure, but it is the most important we’ll ever have. It will always include struggle, difficulty and a whole lot of the unknown that we won’t always know what to do about. Where does that leave us? Well, I am not exactly sure, but if we do our best with all we have (or haven’t) been given, I think this whole life thing could turn out pretty great.

When life is going well, especially for those of us who are chronically ill,we can become paranoid about when something negative will happen to ruin it. I deal with this sort of anxiety almost daily. I suppose the best thing to do is take not just one day at a time, but one single moment at a time. Enjoy the wind, the sunshine, the love, and take all we can from it, so that even in the most difficult times we will still have goodness stored within us. Of course this is easier said than done; but I think it’s worth an honest shot.

I’d imagine the whole world was one big machine. Machines never come with any extra parts, you know. They always come with the exact amount they need. So I figured, if the entire world was one big machine, I couldn’t be an extra part. I had to be here for some reason. And that means you have to be here for some reason, too.

~Hugo

To check out my friend Jonathan’s blog, clicky clicky! It’s worth it, trust me. I’m a doctor*.

*disclaimer: I am not a doctor, not Gallifreyan or otherwise.

Eleanore Vs. A Written Selfie

Dear you and I,

It has come to my attention that most of my life has been dedicated to dealing with chronic illness. Being chronically ill is a full time job (that doesn’t pay), and this blog has taken over a tremendous amount of my passion as I pour everything I have into it on a (mostly) regular basis in order to help both myself and others feel heard. I don’t mind this, but as my fingers furiously type away, sometimes the idea that there is more to me than my medical history slips right through them.

When I was 15 chronic illness fused itself into my young life. Being so young, it was a struggle to go through all the life changes I needed to. Many people tried to console me using the phrases, “you aren’t your illness,” or “that isn’t the only thing about you.” Well, at first this was meant as consolation, but as time went on it seemed to feel more of a way to either differ from the fact that people  didn’t know what to say to me, or the fact that people didn’t want to hear about it at all.

Over time I learned that I have no choice but to live my life differently than most others my age and those phrases began to irritate me. It is extremely easy for someone who is not chronically ill to tell someone they are more than their illness. They haven’t the slightest idea the strength, courage, bravery, and effort it takes to be a chronically ill person. As I continue my life with my special needs and my chronic pain I can’t help but think, “how could my chronic illness NOT be a tremendous part of me?”

Nowadays it irritates me when I am told that I am not my illness; the phrase feels dismissive. I am my illness. I have no choice but to be because not accepting it is far from healthy, and I already have plenty of health issues on my list. Rather than choosing to be or not be my illness, I now choose to be my illness as well as other things and to encompass it all.

This blog has transformed into purely being about illness to being about every part of me. Sometimes I worry that I deter too far away from the main subject, but nearly everything I write comes back to my health, because my health is a tremendous part of me. It affects how I move, how I live, how I breathe, and how I think, not because I don’t have the strength to fight it, but because I realize that I must stop fighting altogether and instead learn to coexist with it. Of course this is much easier said than done; but I’m working on it, okay?

All this being said, I do think it is important to remind myself of other things that are a part of my life that make me the person that I am. last year I made a post of things about me that don’t relate to my illness, and as I drove home late last night down a mostly empty freeway, I realized that I would love to do that once again. My darling readers, I present to you, a written selfie.

  1. I love to laugh. Laughter is one of my favorite things about being a person, and  my humor is largely what has helped me survive my difficult life. I pride myself on making people laugh in the absolute worst of times, even if I’m in a hospital bed hooked up like a cyborg. I am so thankful to the people in my life who laugh with me. The only thing better than laughter, is laughing with the people you love.
  2. Compliments about my personality make me a glittering, sparkling, happy thing.  I think it is wonderful when people compliment how I look, however, when people compliment my personality or how I think, well, it’s a good way to make my heart glow.
  3. Two of my favorite movies are O Brother, Where Art Thou? and We Are Titans, which is extremely odd considering that most movies I love are nerdy, Sci-Fi sort of things.
  4. Getting hand written letters in the mail, at least to me, is one of the best feelings in the whole entire world.
  5. I have an insatiable sweet tooth and I completely blame my grandmother for this, as I definitely inherited it from her. We especially have an affinity for icecream. Aside from icecream I also like, well, just about anything I’m not allergic to.
  6. I love nature. Though I am not nearly as physically capable as I wish I was, I greatly enjoy being in forests and on sandy beaches. Both are landscapes I desperately miss about my home state, California. Don’t even get me started about redwood trees!
  7.  I used to play bass guitar and piano. I still play my bass guitar on occasion. Aside from them, my favorite instruments are ukulele, violin, and accordion. Don’t ask why I love accordion- just go with it.
  8. When I was a child I was terrified of bugs (especially spiders), people with beards, dogs, and bandaids. 20 years later, I love beardy people as well as dogs and the bandaid thing I’m neutral about. Spiders can still go fuck themselves. Actually, they really shouldn’t, we don’t need more of them!

It has become extremely important to me that I acknowledge my pain and sickness. However, the rest of me deserves equal acknowledgement which doesn’t always happen. All of my parts, the painful, the strange, and the lovely make up who I am; who says some are more important than the others?

If I stand too close I might fall in,
But if I’m too far gone I’ll never win.
If you believe in me I might just want to spend some time with you again.
I’m afraid I tend to disappear into an anxious state when you draw near .
There is no reasoning, it’s quite a silly thing ,
But it’s the way I’ve been for years.

~ Stand Too Close – Motion City Soundtrack 

Eleanore Vs. Cognitive Block

Dear human thingies,

The last week or so my writing has faltered which I find distressing. There is a legitimate and frustrating  reason that I am currently struggling to do what I so adore, but that doesn’t make me any less irritated. I’m trying to balance the two by writing about the problem; after all, that’s what my blog is for, isn’t it? 

Recently I started to experience worse jaw pain than normal, and upon visiting two dentists  found that my wisdom teeth are impacted, which is causing excruciating pain in my already malformed jaw. I need to have them removed, but getting that done is tricky since I am on Medicaid and have a complex pile of health issues. What should be a fairly routine dental procedure has turned into an ordeal for me and I am left in pain, exhausted, and anxious as ever.

This past Friday I visited my counselor as per usual. What was not usual was that I ended up having a panic attack right in her office. I was feeling extremely disassociated, my mind wanting nothing to do with the rest of me, and was overcome with pain. I explained to her that I was having difficult time thinking altogether, because the pain really seemed to be stealing the show in my head. “I feel like there is a giant wall in my brain and my thoughts are trying to climb over it but just can’t,” I told her, to which she instantly replied, “You’re experiencing cognitive block.”

I’ve said before that the only thing worse than being sick is being sick and not knowing why. When my counselor was instantly able to label my current unpleasant mental state I couldn’t help but feel an odd sense of relief, which I was able to beautifully articulate to her by saying, “it’s a thing?!” Indeed, cognitive blocks are a thing. A cognitive block happens when something seems to overtake your mind, whether it is pain, grief, depression or any other intense, prolonged sensation or emotion. As my counselor explained, this is the same reason some may experience what can be known as “blind rage.”

I have never experienced blind rage; however I have experienced cognitive blocks often in my life, the perpetrator usually being depression or intense physical pain. On my worst days, whether I am suffering mentally, physically (or more often than not, experiencing it all at once), my mind is flooded and cannot function beyond the sensation of pain. Some days it feels like a wall while other days it feels as if my entire mind is filled with cement so that my thoughts cannot even attempt to move. I am mentally  paralyzed with pain, sick and unable to process anything, let alone able to help myself move towards a less dreadful mental state…and so I find myself trapped.

These blocks worsen my mental and physical pain therefore preventing me from not only doing what I love, but from doing what I must. I was incredibly disappointed in myself last week when I was told by my boss that I made a serious error at work. Thankfully my boss was forgiving, however I felt terrible because I was afraid I couldn’t truly promise her that it would not happen again. I bit my tongue and assured her I’d be extra cautious because despite my sickness I still need to make money in order to survive. The truth is though, if I am experiencing a block, no matter how careful I am, I’ll still end up doing something wrong. 

Chronic illness means that cognitive blocks are a normal part of life, but I never get used to them. I am never okay with making mistakes, being forgetful, being unable to function as I normally do or feeling forced to leave my passion behind because my mind won’t allow anything to escape it. It never gets easier to feel constantly overwhelmed by physical pain while my mental health struggles to overcompensate for a hurting body. No matter what I am thinking about at any moment, it always comes back to the fact that I am in pain, and what I want more than anything is to be able to live without it.

Unfortunately most of my illnesses I will have all my life, which means that at best I can only try to find the best ways to minimize my pain, which I am working on regularly; or at least when I have the energy to do so. Fortunately, at least for today, after making a million phone calls, far too many tears, the help of a few kind strangers and an extremely lucky cancellation, I miraculously was given a dentist appointment tomorrow to hopefully start on a path to solve my dental issues. I am both excited and terrified, but I hope that I can soon be rid of this pain so that my mind can begin to work at least a little bit better.

Tomorrow is Valentine’s day, and I wish all my darling readers a lovely day with whoever (or whatever) they adore most.  The world needs love now more than ever (including myself) so I hope every kind of love spreads like wildfire. Love each other and love yourselves kindly.  Disclaimer: It is probably a bad idea to set things on fire in the name of love. Don’t do that. 

Oh, friend of mine
Will you be mine?
Please don’t be so…
It’s OK to be terrified (terrified)
Please don’t be so shy.

~Valentine – Pentatonix

Note: The photo above is from a video game called Psychonauts, which used to be one of my favorite video games until I got older and began to become ill from 3D and first person games. To read more about my life as a sickly gamer, click here! 

Eleanore Vs. Being a Medical Anomaly

Dearest delicious things,

I only address you as such because I am munching on caramel popcorn and I currently lack creativity. But don’t fret reader, I promise I have no intention to munch on you. Disclaimer: this does not apply in a zombie apocalypse. 

I think it’s fascinating that whenever I am wrestling with writer’s block my life instantly gives me something to write about. This was my experience today when I found myself once again in a dental urgent care still unsure about what has been causing my severe jaw pain the past few weeks. 

As I found out, my teeth are freaking the fuck out because my facial malocclusion crowds and misaligns them (and that’s only part of it). The kind dentist assured me that while it is nothing to panic about I would have to see an oral surgeon to talk about having some teeth removed, as well as to see about what other treatment they might find helpful for my maloclussion.

This would be fairly straightforward if not for the fact that since I am on Medicaid there are not many oral surgeons who wish to see me. My dentist’s advice was to call them and  tell them my unique situation in detail because as she put it, I’m exactly the sort of thing a dental school would love to get their hands on. Literally. She also told me I’m one of the most complex  cases she had ever seen. She isn’t the first to tell me this, and she probably won’t be the last, but I’m never sure exactly how to feel about it.

The challenges of chronic illness never stop; they don’t even go on nice summer vacations. Being a chronically ill anomaly provides even more challenge and complications. Since childhood my malocclusion has been regarded as one of the strangest most doctors have ever seen. I’ve had doctors go so far as to ask to write about me for possible journal submission, but at the time I wasn’t sure how I felt about being in a journal so I politely declined (little did I know I’d grow up to become a spoonie blogger). 

There are two main difficult parts of being a medical puzzle, the main one of course being that treatments are always difficult. Between my allergies and all my other illnesses, finding one treatment for a particular illness that doesn’t lead to the aggravation of another illness is a battle. Too many times I’ve had doctors stare at me in awe, unsure what to do with me, because the standard treatments are incompatible with my condition. Especially when it comes to medications finding one I don’t have adverse affects from is like playing minesweeper…and just like the game, it usually doesn’t last long before I explode.

On the one hand, since I have grown to have an affinity for medical things, the fact that I am a strange medical thing is neat in a twisted kind of way. Still I cannot help but sometimes wish that I was the spectator rather than the patient, because no matter how interesting my situation may be, at the end of the day I am physically and emotionally exhausted just from being myself.

Socially it is also frustrating. Though I have met a few people who have different parts of my illnesses, I’ve never met a person who has the majority in common with me. Recently I’ve found myself shying away from trying to connect with others who are chronically ill because in my experience, our conversations ultimately turn into contests as to who deserves more pity or who has had it worse. That is never my intention in a conversation; instead I much prefer to have the support of each other to help us through. The competition is mentally exhausting for me, and so I instantly retreat to the introverted side of my personality. 

On days like these when I’ve been in a medical setting pretty much all day, I return home feeling weak and troubled, my mind wandering about. I imagine what it would be like to be an easily treatable patient or to not be a patient at all. I envy people who can go to the dentist and not worry about Vasovagal Syncope or allergies to drugs. I wonder what it must be like for someone to be of average health, and to always get better when they’re sick or only end up in Emergency Rooms for accidents, rather than having it be a standard part of their lives. 

Then again, there is always a silver lining with me, and the one that comes with my illnesses is, well, me. Being chronically ill has inspired me to write, to set off on a mission to help people using my experiences that I would not have behind me if I were an average girl. It’s possible that I may not have been a writer at all if I were different. I always say that I am a writer with a life full of stories to tell, but what would I have to tell if I were a simpler human being?

I will never have the answers to any of these questions because I am never going to be like anyone else in any fashion. I will most likely be a medical anomaly for the rest of my life and I have to learn to be okay with that. Should I resist it as I had before, it will only lead me to more frustration and sickness, and I’ve had quite enough of both. While I never know exactly how to react when I’m told how strange or complex my medical situation is, I suppose the only way to truly react is by being myself…which naturally means that the answer would include a bad pun and loads of sarcasm. 

So, what does it feel like to be a medical mystery? It feels uncertain and frightening most of the time. It also feels a little special being able to make the jaws of nurses and doctors drop by merely telling them my medical history. But overall, at the end of the day, it mostly feels exhausting and trying, and like I need a plethora of hugs. I may not know of many treatments that work, but that one is foolproof for certain.

In other Stardust news, my adoptive mother bought me a giant panda for Valentine’s day because I am definitely an adult and not an easily excited child on the inside. 

To read more about my life with my facial maloclussion, click here,  then click here (it’s a two parter)!

A cloud hangs over,
And mutes my happiness,
A thousand ships couldn’t sail me back from distress,
Wish you were here,
I’m a wounded satellite,
I need you now put me back together make me right.

~Incubus – Anna Molly

Eleanore Vs. My Shot

Dearest warriors,

A few days ago my darling friend Nat posted a song to their Facebook called “My Shot” from the musical Hamilton. I haven’t seen the musical, in fact I didn’t even really know what it was about except obviously it had something to do with Abe Lincoln (I’m kidding, don’t hurt me). I pressed play and immediately found myself captivated; the song injected my soul with the fervor of a true revolution.

The song itself is about our country’s past history, and as someone who fell asleep during every history class ever you’d think I would not be so entranced by it. But I found emotions swirling inside me as the chorus exploded out of my speakers:

I am not throwing away my shot.
I am not throwing away my shot.
I’m just like my country,
I’m young, scrappy and hungry,
And I’m not throwing away my shot.

The fire of it all caused my heart to swell with pure energy.

That energy lead me to assess my own personal obstacles. My health, my desperate need for a stable home and stable income, and the uncertainty of my future. Each of my current trials popped into my mind like fireworks quickly fading just before the next thought was to appear.

Thinking about my problems usually causes me to fall short of breath and become overwhelmed by anxiety, however this morning as they appeared and disappeared while I listened to the cast of Hamilton singing, “rise up!” I felt a surge inside me that said, “rise up. You can do this.” There are millions of people in the world who have overcome tremendous suffering. I am taken aback when I think of all that humans have endured and overcome, yet I often forget that I too am a human who has survived and fought to move forward despite that which has tried to hold me back. Many of us are- warriors come in all forms of human beings, and we don’t always recognize the strength of it whether it is in ourselves or in others. 

I fail to realize that where I am now is significantly improved from where I had come from despite my life being far from how I feel it should be. I have found my way here not necessarily on my own, because I did have the help of many kind people, but I was carried forward by both others and my own resilience. I am not as healthy as I should be, and my health will always be a battle, but it is better than previous years. I have a few new friends who are some of the most wonderful people I’ve ever come across. Every day has been one of my shots to do with what I choose. Some shots have been extremely small while others have been monumental, but still it remains true that they all impact my life. 

The past year I have lost, but I have never felt more determined to create the life that I want. In a way I feel like I have more than before because for the first time I have some of the same drive and passion that “My Shot” so perfectly exemplifies.Well, I may not be anywhere near as badass as Alexander Hamilton. Realistically, I’m not even nearly as cool as the man that plays him  (and who wrote the musical) Lin-Manuel Miranda. But I have fought time and time again to come out of every bit of adversity that has come my way.

I have always been the queen of self-deprecation which never makes any situation better; but I believe it is time to realize that I deserve more self love. I want to teach myself that it is okay for me to make mistakes and that my mistakes don’t actually ruin everything as my anxiety would like to convince me. I want to love myself for every illness that sits underneath my skin and for every imperfection. I want to learn to be okay with being who I truly am as I continue to take my shots that I will sometimes miss. Even if I still fail, and I most certainly will fail, the fact that I still dare to strive towards a better life when there is so much that can potentially hold me back must mean something. It must mean something to me, along with my newfound passion for my life. My life has proved on more than one occasion that most of my goals will not come to me easily; therefore I will only succeed by courage and bravery, and by not throwing away my shots.

When you’re living on your knees, you rise up!
Tell your brother that he’s gotta rise up!
Tell your sister that she’s gotta rise up!

~My Shot- Hamilton the Musical

Eleanore Vs. This Again? I Mean, Really?

Dearest readers,

Today I find myself in a dental urgent care, which is not my favorite place to be. In fact, earlier today I compared going to the dentist to traveling through the deepest circle of Dante’s Inferno, and I don’t think that’s being overly dramatic in the slightest.  Yesterday, as well as the rest of the week, I decided to adult as hard as I could; I woke up early, did some yoga, and did everything to ensure that I would have a lovely day. Spoiler alert: I had a terrible fucking day.

There were several reasons why the day was unpleasant, but the one that had troubled me the most, by far,  was my experience at the pharmacy. I was prescribed some medication for GERD because the stomach virus I contracted a month ago is not only still damaging my stomach but has given me the new disorder. This was irritating news, however I figured I’d pop by the pharmacy after my long day at work, get the meds, and soon after find myself in bed which at the time was the only place I really wanted to be.

This did not go according to plan. I went to the pharmacy and I told them that I had recently been granted Medicaid which meant that the pharmacist had to call Medicaid before I could receive my medicine. While I didn’t mind this specific part, what I did mind was one of the other pharmacists asking across the counter, “is the medicine for your daughter?” “I think you have the wrong person,” I responded cluelessly. He walked over to the counter and asked me again. “Is the medication for your daughter?” “No,” I said, finally understanding why I was being asked this seemingly random question. “It’s for me,” I said firmly. He looked at me in disbelief, unsure what to say, before asking me my name and quadruple checking the card. I finally paid for my medication and tried to leave faster than the tears could fall from my eyes.

For much of my life the classic phrases of, “but you don’t look sick!” “You’re so young!” and “It can’t be that bad!” Have burned through my heart and mind when spoken by others, especially doctors and friends. It was worsened by my family who never believed I was sick, who constantly accused me of lying and exaggerating  despite seeing me countless times in ambulances and hospital beds with catheters in my arms and more wires about me than a Borg entity.

For about seven months last year I was without medical insurance and it was by far the most frightening seven months of my life. In that time I gathered 5,000 dollars of medical debt that I still have no idea what to do about. I was rejected from Medicaid six times before having another company assist me with fighting for it until finally I was approved.
Not a month later, while on the phone trying to make an appointment, I told the receptionist I had Medicaid. “Why do you have Medicaid, because you’re pregnant?” She harshly replied. “No, because I’m chronically ill,” I explained. A flat”Oh,” was all I received before I was scolded that I better have my card on me at the appointment to prove I actually was telling the truth.

I have expressed before that one of the only things worse than being chronically sick my entire life is being chronically sick and constantly met with disbelief. For all the illness I have faced at such a young age with little support, I feel I at the very least deserve to not be questioned about why I finally have Medicaid. Believe me when I say there is no pride in having to use it, or having to use it as often as I must to keep my health  just barely maintained. Every single time I touch the card it makes me feel as if I have failed myself, because I was never healthy enough to have a normal life or a normal job.

I love pretty, unique clothing and my turquoise prescription glasses. I adore having my nails painted at all times and I enjoy having my short hair trimmed into a steep angle. But none of that makes me any less sick. The picture you see above I took the morning after I spent the night in the Emergency Room last month. I felt sick and exhausted beyond compare, but I had a small glimpse of hope brought to me by a nice outfit I chose to wore.

The reason I strive to put energy in how I l0ok is because of how sick my body usually feels. My star printed clothing covers my aching bones and my stinging nerves. My bangs hide my facial malocclusion that has riddled my life with difficulty most would never have to experience. My polish decorates my fingers that contain inflamed joints along with the joints in my body. It all makes me feel a bit more like myself, especially when my sickness casts a shadow over the entirety of my being. There is a big reason that I don’t look sick; It’s because I try my absolute hardest not to, and most days, I don’t feel like it is working at all (Naturally, when I do feel it is working, I have to snap a selfie).

I’ve written this a thousands times and I will keep doing so until my fingers fall right off my hands. There is no way a chronically ill or disabled person is supposed to look. There is no standard I should be expected meet in order to convince people that my illnesses are real. Moreover, I am completely utterly exhausted of having to prove that I truly am chronically ill. I don’t take joy in my sickness, I don’t wish to brag about them for the sake of pity. But they are a part of me, a part of my life, and the only way to survive my life is to accept them and thrive with them inside me.

Some days I feel as if I am standing right in front of people, speaking, and yet I remain unseen. I hate the feeling of my heart sinking down into my stomach every time I must put the effort into convincing others that I’m not what they assume me to be. I don’t have much energy to begin with, and being forced to waste it on convincing is tiresome.

All people are different in their strengths and weaknesses. Why is that so hard to see?  I need the world to listen and to see people like me for everything that we are. We are screaming to be heard. Please, please listen.

No lyrics today, just a gorgeous chill song to end a frustrating week. Click the blue to travel to the YouTubes.