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.

Eleanore the Angry Celiac Vs. Everything

Dearest Silly Yaks (and regular yaks, too),

Over ten years ago I was diagnosed with Celiac disease and my life, much like my diet, was flipped upside down. There was thankfully no Demogorgon in my Upside Down, though it often felt like one was living in my abdomen.  Since I started my blog, I have become fairly transparent about most of my health issues and diagnoses; but the one I have been oddly removed from has always been Celiac Disease. This isn’t for a lack of wanting to express my thoughts on living with the disease. On the contrary, I have been purposely biting my tongue about the disease that I suffer from because of the stigma that comes along with the way of life I am forced to live due to the illness. Finally, I have decided to release my tongue from the clutches of my misaligned teeth. This decision was largely brought on by an unexpected muse; my phone.

While I am unsure how it became activated, my phone has an app that constantly sends me little notifications. On occasion it can be useful because it tells me what the weather will be, what new albums have come out, and even tells me when the St. Louis Blues are kickin’ ass. For the most part, it is a handy little addition to my robot friend. However, it also finds articles it thinks are relevant to my life. Nearly every day, at least one of these articles has a title that reads, “Irish People are Wasting Money on Gluten Free Food!” or, “The Truth About Gluten Free Diets!” and my favorite ones, “Gluten Free Diets are Actually Dangerous!”

Yes, I agree that gluten free diets are a fad…to an extent. It is true that those who are not Celiacs or allergic to wheat should not be eating gluten free because it can have adverse health effects. Nevertheless, it must be said I am one thousand percent fed up with the fact that the media has been focusing on the fad while Celiac disease as a whole is left completely in the dark. I am exasperated by the fact that the gluten free fad gets more attention than the disease that has caused so  much struggle and suffering in both my life and millions of others.

While I cannot speak for every Celiac, I am sure most of us would agree that we are sick of the dirty looks, rolling eyes, scoffs and skepticism we receive throughout our daily lives. We are exhausted of the scathing questions laced with doubt aimed at us because of how our disease alters our diets.  Lately, I have realized that one of the reasons I am especially aggravated by the never ending slew of articles and videos about gluten free diets is that while diet is a tremendous part of a Celiac’s life, these ignore everything else that entails being a Celiac. It ignores the depression, the brain fog, the weakened bones, the nerve and muscle issues, the exhaustion, the hospitalizations, and the countless other attributes of the disease.

Every time I see one of these articles pop up, I feel shamed for an illness I had no choice in having. Furthermore, I feel completely ignored, my serious illness being constantly ridiculed by major media. It seems the entire world is making a mockery of my disease. As I have said before, no one in their right mind would doubt or make fun of someone with diabetes even though they must adhere to a strict diet. Why must it be any different for us?

I have tried so many times to write a post like this, and each time have ultimately decided not to post it. I would think to myself that I didn’t want to come off as angry or crude, or dip my foot into the never ending clusterfuck that seems to be the conversation about gluten free eating. After too many years, I have been sent over the edge.  Our society is focusing on the wrong part of gluten free eating, and those such as myself suffer for it. 

Of course, people should think logically about their own specific health before following a diet of any kind. But this fad should not be the only focus. The primary focus should  be aimed towards how to be supportive of Celiacs, and most importantly of all, empowering someone diagnosed with Celiac disease to make a healthy transition to their new lifestyle that can end up truly saving their life.

Instead of all the doubting and intent on proving us wrong, why don’t we spread more help and information that will better the lives of those who are chronically ill with a serious disease? Not to mention, most people I have met that are non-celiac gluten free could literally care less about those who say it doesn’t make them any healthier. They will do whatever they want, as they should, and will figure out what is best for them in the long run. Regardless of the fad, I am sure that the repercussions of a normal person eating gluten free are not nearly as terrible as a Celiac eating normally or not having enough information.

I’m sure this one, angry little post won’t change much, though if it opens the mind of even one reader, I’d consider it a success. Celiac disease is a real illness and a dangerous one, and it is time that we turn the spotlight on what truly matters – helping those who are ill get better in a healthy way, and not shaming them in the process.

I think garlic bread would have to be my favorite all-time food. I could eat it for every meal. Or just constantly, without stopping.

~Scott Pilgrim (I’m sure he meant gluten free bread…right?)

 

 

Eleanore Vs. GERD

Dear squishy, sentient things with tummies in the center,

I woke up this morning at 3 a.m. Lately, not even Benadryl can keep me asleep, but that is a quibble for a different time. Today I must express my woes with my new enemy – my uncooperative belly. Well, let me be honest; when I was 17 and diagnosed with Celiac disease, for a while my abdomen and everything within it were all against me. However, after I got my Celiac under control, despite chronic nausea and my 13 other allergies, I was getting the hang of eating again, enjoying my food, and everything seemed great.

BUT THEN!

In January I got a terrible stomach virus that lasted a month and a half because I couldn’t completely fight it off. After weeks of nothing but Ruffles, soup, and plain bread, I started to heal…until I began to have symptoms of another kind. My throat always felt half swollen, my abdomen was always in pain, I was constantly running to the bathroom and I was altogether a miserable lumpy lump. I finally went to the doctor and I was given another diagnosis; I had GERD, which stands for Giraffes Eating Ridiculous Diets. Just kidding- it stands for Gastroesophegeal Reflux Disease. The Giraffe thing was much more pleasant, don’t you think?

I was given medication and told to change my diet in order to avoid GERD triggers. Change my diet? Again? After ten years of being gluten free by force as well as avoiding all my other allergens, the idea of changing my diet seemed like a nightmare that I was not willing to live through.

At first I was defiant, hoping that it would only be a temporary thing, so I didn’t change my diet at all. I was still consuming a good deal of spicy foods, tomatoes, and everything else that I loved to eat within my former restrictions. This of course was a tremendous mistake and I was getting worse and worse by the minute. After a few weeks I waved my white flag, surrendering to the chaos within my belly, and started to make alterations to my eating habits.

According to the magic internet, having GERD means taking away acidic and fatty foods. It also means having to cut back on chocolate (this hurts my soul) and no longer having citrus fruits. The past month I have done pretty well at cutting back on most of these foods, but this morning I lay in my bed, looking for recipes to make for my friends on Easter 2: Revenge of the Bunnies this Saturday. Though I have developed a slight Pinterest addiction, I’ve come up empty handed.

I find myself exasperated with my diet, my adoration for food waning. I want to be able to enjoy my food and eat healthy, but between all my restriction and being without much money, I feel utterly stuck. I still have hope that I will not be stuck with GERD forever, not to mention that I’ve been told that it can be aggravated by stress. To say my life is stressful is a severe understatement, but maybe as I work to improve my stressful life, my body will benefit along with everything else. Here’s hoping that I may regain some of my health back in the future.

Readers, do you have GERD? If so, how do you manage it, and what do you eat that is wonderfully delicious?  Give me your advice, my tummy is dying to know!

Oh, Please don’t go- we’ll eat you up, we love you so!

~Where The Wild Things Are

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. 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 

The Book of Eleanore Vs. Life

Dear creatures that were once thoughts and are now beings,

Today I express to you my thoughts about thoughts (how meta)! Long ago I decided to create a a little book of Eleanore. I dug through my room and found an obnoxiously pink leather bound book, and before long it went from being a simple journal to invaluable. A year later, it contains every single hope I have along with a plethora of lists. There are lists of places I want to visit and places I have been, concerts I have been to and ones I dream to attend, my favorite songs, books, and movies. It holds quotes from those favorite things that have made a place in my heart as well as wonderful quotes from people in my life who have taken even bigger places in my heart. It also includes tiny written dates next to those items I have already accomplished. This pink, leather thinking thing has come to bring me so much joy…until I started to wonder if I was being odd.

It was only recently I realized that this practice might be seen as strange. Many people have a bucket list, whether it is tangible or only in the subspace of their minds, but my book became more, as you can tell from its description. After initially being pleased with this new little creation of mine I became a bit self conscious about it, and that feeling has persisted since.

I’d assume for most people it is easy to understand why I’d write down everything I wish to accomplish, so I find that part unnecessary to explain. The oddness lies in why I write down what I’ve already done or every quote I have heard that has caused my heart to flutter. My pondering has led me to a single answer; it all comes down to memory. My chronic illnesses, specifically Celiac Disease, PTSD, and Chronic Fatigue Syndrome (also known by its more daunting name, Myalgic Encephalomyelitis) all contribute to my mind not working quite as it should, and as I grow it troubles me more and more.

Celiac disease keeps my brain in a fog despite being gluten free for nearly ten years. Contrary to popular belief, a Celiac going gluten free solves many issues, but not all. Considering I was not diagnosed until I was 18 years old, my disease has done a good deal of damage to my body, some of which cannot be reversed. While I can remember many memories and important information, I often struggle to remember fine details. My brain is notorious for forgetting pin numbers, passwords, and usernames, as well as the placement of items. All of this information seems just out of reach in my mind yet I cannot bring it to surface. I’d be perpetually lost in Missouri if not for being able to say to my pocket robot, “Ok Google, where the fuck am I and how do I get home?”

There is also my PTSD and Chronic Fatigue Syndrome, both of which work to cause my disassociation. Together they keep me in a dreamlike state, causing me to always feel separated from my own body, on the worst days questioning if I’me even real at all. Disassociation causes constant discomfort since it makes me feel less than human and as if I cannot completely feel most things I touch. This also explains why I am particular about textures; some I get more sensation from while others I seem numb to. The numbness is a cruel reminder that my brain is not average at all. (You can read more about my disassociation here!)

Two years ago my grandmother began to suffer from the onset of Alzheimer’s. Within months it progressed and completely overtook her mind, making her forget much of her life. Witnessing her mental decline has not only made my heart ache for her, but has filled me with fear that I might end up the same. I certainly hope I do not inherit the disease from her, but every day I can’t help but think how badly I do not want to forget.

For everything in the past that I wish to hold onto and everything in the future I hope to experience, my little book of Eleanore captures it all and keeps it safe. I fight vigilantly to have a fantastic and wondrous life, and to forget the most spectacular parts would be a terrible loss. My book calms my anxieties about loss while allowing me to organize the static in my mind. It is altogether a written composition of the stardust that I am made of.

Those of us who deal with chronic illness experience life differently than those who are considered to be of average health. Therefore we must find our own ways to cope with life, to organize it and to live it as happily as we can. To the outside world we may seem peculiar, but likewise, most days the outside world seems peculiar to us. The ring I keep on my finger to help with my dissociation and my anxiety, my compulsive list making, my little book and all my other habits help me to experience life positively despite all the illness that tries to deter me.

The more I become transparent about my life with chronic illness the more I meet people who are similar to myself, and it is positively fantastic. In fact, it is one of the main reasons I write; to remind us all that we are not alone in our struggles or our peculiarities. What helps you to cope with your illnesses and help you experience life?  I hope you’ll share with me your answer in the comments below!

Do the scary thing; get scared after.

~Klaus Baudelaire – A Series of Unfortunate Events

 

Eleanore Vs. Privilege in Flux – Part Two

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Previously, on Sickly Stardust!

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

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

(To read the rest of Privilege in Flux- Part One click here!) 

When we talk about privilege, the first two things that usually come to mind are racial privilege and income based privilege. While it causes quite the uproar, these are things that need to be spoken about. I’ve also found that for most people of any situation, it’s extremely easy to point out the privilege of other people while failing to point out your own. I’m not going to do that.

Here’s a list of things that positively impact my privilege:

  • I live in an extremely rich country
  • I am not homeless
  • I have a car
  • I have a cell phone and internet access
  • I have access to clean water and safe food
  • I have light colored skin (I do not mean that I am BETTER because I have light colored skin; but I do mean that it is an unfortunate fact that in America, certain privileges are given to those with lighter colored skin. It is a deep, immoral flaw in our American culture and system that is in dire need of uprooting. )

And here is a list of things that negatively affect my privilege:

  • I live in a rich country but am under the poverty line
  • I am chronically ill and disabled (without disability benefits)
  • I am female
  • I am in a racial minority
  • I am in a sexual identity minority (even within the LGBT community itself)
  • I no longer have parents/ family aside from my sister and grandmother
  • I have minimal healthcare
  • I do not have a steady job
  • I do not have a steady place to live

I’m sure there is more to add on both sides, but those are just a few examples. As I have grown older and what I hope to be a more thoughtful human being, I have noticed quite a bit about how privilege works for individual people. For many people, but not all, privilege is constantly in flux. While we’d like to assume it is easy to look at someone and immediately point out their privilege or non-privilege, the reality is, it isn’t. Some parts are easily seen on the surface but many aspects of human life are not. I’m learning to accept my privileges and non-privileges, as well as each way they affect my life on a daily basis.

Getting into my mental health program, getting my social worker and starting to have appointments with my psychiatrist in an odd way made me feel privileged and non-privileged at the same time. I saw the other people in the waiting room with me and thought, “I’m not struggling as much as them, am I?” My social worker constantly reminds me that if I wasn’t, I would not have been deemed an emergency case. Admitting what you don’t have is rarely easy.

It was only a few weeks ago that I was finally accepted by Medicaid after six applications within nearly two years. I was brought to tears by the revelation that the Emergency Room was no longer my only option for medical care, that after three months of being half blind I could afford a new pair of glasses, and that despite Medicaid not covering everything I need, it would at least (hopefully) get me into a better place than I had been for the past year.

I try to avoid getting political on my blog; that isn’t what my blog is about. However, politics affect me constantly because being chronically ill and poor, I rely on government funded aides like Food Stamps and Medicaid in order to survive. Especially lately, I have heard so many people in the media, in daily life, and even on bumper stickers expressing their loathing for people such as myself, those of us who use government aide in order to get through our lives. They are convinced that we are despicable frauds, unmotivated and devious, sucking money out of our already struggling government.

They don’t understand the sinking in my stomach and shame I feel every single time I use my Food Stamps card. They don’t feel the rejection I feel when I am reminded I can’t to go to any urgent care or hospital when I’m struggling with my chronic illnesses that I will never be cured of. They won’t know how many tears I have shed over the fact that because I am young and disabled, I have to work ten times as hard to do even the simplest jobs in order to just barely survive. I feel like I’m fighting with all my might only to get absolutely nowhere. Meanwhile, I’m crumbling inside, emotionally, psychologically and physically as I’m being told how “lucky” I am to be so young.

I wish more than anything that I could afford all the healthcare I need, my own place to live, and my own food. However, many of the events that have happened in my life occurred without my permission and were entirely out of my control. Every day I wake up wondering what I could have differently in order to have not be born into an abusive family or to not be born with as much illness as I have been given. Every night, I find my way to the same realization that there was nothing I could have done. What I can do is try my best to live despite it all and fight with every bit of stardust I’ve got in hopes that it will lead me to a better life.

This post has been emotionally exhausting. As I fight my tears I hope that if there is one thing people take from these past two posts, it is that many versions of privilege are always in flux, and regardless of how intelligent you are, you cannot always assume you know the amount one has. Believe the people that tell you they are sick. Believe those who are trying in earnest to improve their lives but keep getting pushed down. Believe those who still seem to get nowhere after working harder than anyone else, and who are having trouble finding a reason to keep living. We are fighting harder than you could ever know.

Believe in us. Please.

Relevant: click here to read a post I did a while back about comparing lives and life as a twisted contest. I feel it is extremely pertinent to this subject.

 

What’s the purpose?
It feels worthless.
So unwanted, like I’ve lost of my value.
I can’t find it, not in the least bit,
And I’m just scared.
So scared that I’ll fail you, and sometimes I think
That I’m not any good at all.

And sometimes I wonder why,
Why I’m even here at all?
But then you assure me I’m a little more than useless.

And when I think that I can’t do this,
You promise me that I’ll get through this,
And do something right,
Do something right for once.

~ More Than Useless – Relient K 

Eleanore Vs. Privilege in Flux -Part One

TW: Suicide

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

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

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

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

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

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

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

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

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

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

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

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

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

To be continued…

You will feel love again, after the rain.

Eleanore Vs. OH MY GOD I FEEL SO SPECIAL AND SHINY

Dear WordPress!

Yesterday was a difficult day which was a bit frustrating as I wasn’t entirely expecting it. For the most part, I can predict when some days will be harder than others, at least to some degree. I did not predict yesterday, so I was exhausted, mopey and disgruntled.

BUT THEN. 

My phone said “BOOP” and a notification popped up from WordPress. It was from one of my favorite bloggers, Ms. Ribbonrx, also known as the lovely Laura Tietz.

Screen Shot 2016-11-08 at 10.34.11 AM.png

I was pretty fucking thrilled. I actually had gotten this once before from another blogger many months ago and I was going to do the post but I forgot because I’m a total jerk (I forgot because I was think I was especially sick at the time) so this time I wanted to be absolutely sure I did this right. So here we go!

The Versatile Blogger Award Rules:

  • Thank the blogger who nominated you
  • Include a link to their blog
  • Write a blog post and display the award
  • Reveal seven facts about yourself
  • Nominate other bloggers for the award
  • Notify each blogger of their nomination

First and foremost thank you Laura for nominating me because it is a pretty big deal to my squishy little heart. I’m always thankful for any kindness and acknowledgement I receive, especially for my blog ,since this has become so dear to me. Laura is a Celiac who has recently undergone brain surgery for a tumor, and unfortunately has another coming up. She is astoundingly brave and is a wonderful writer in that she is both honest and raw while still being articulate about everything she experiences. I’m consistently impressed with not just her blog, but with her very existence. Click here to be taken to her!  

As for seven facts about Eleanore:

  1. My favorite colors are black, mint green, and turquoise, mint green specifically because it was the color of my grandmother’s wedding dress.
  2. I have a freckle the size of a quarter on my left shoulder blade; it’s my birthmark, so I have been told. I have many, many freckles, but it is by far the largest. I used to be terribly self conscious about it, but after many years it’s finally become one of my favorite physical attributes. Bonus fact: if you take a pen and connect all the freckles on my right arm, they create a silhouette of California. Don’t ask me how I figured this out.
  3. I have a little book of life goals, favorite things, places I want to visit, nice people I’ve met and nice things people have said to me. It really keeps me going and helps me to combat my anxiety and depression. It keeps me moving forward and I recommend anyone make one for themselves. Especially since my memory is not so good, reading the nice things that have happened or have been said in the past is always a lovely surprise.
  4. When I was little one of my favorite movies was Jurassic Park, but I watched the whole thing with my hands over my ears because the dinosaur roars were SO damn loud. I’ve always been sensitive to sound, so while the dinosaurs never scared me the sounds were jarring. Spoiler alert: I still do that when I watch Jurassic park and they’re still one of my favorite movies.
  5. I adore the sound of accordions. I blame the Austrian half of me.
  6. I love talking on the phone to my friends. The days that I get phone calls from friends make my day, and on the worst days I often think, “man, I hope I get a phone call.” When I do, I’m ecstatic. When I don’t, I’m a sad little puppy. It’s not the act of just simply talking on the phone, it’s  having incredible conversations that set my heart aglow with people that I care about. I crave amazing human interaction and nothing beats it. Except maybe cupcakes and warm blankets. When I have all three I’m the happiest little creature in the universe.
  7. Clothing with buttons and pockets make me absurdly happy. I’m hoping my wedding dress, whenever I get married, will have one, the other, or ideally both.

Now for my nominations!

  • I was going to nominate Laura again, but I suppose I can’t. So whatever. 
  • Depression Comix – This blog is truly one of a kind. The artist, Clay, creates comics in regards to what it is like living with depression, and I’m always amazed by both the beauty of the comics and their accuracy. This artist is immensely gifted in his ability to convey what it is truly like to live with depression and other illnesses.
  • Annoymously Autistic – This fabulous girl, Anna, blogs about her experiences living with Autism and I have learned a great deal from her blog. I admire her so much for her ability to embrace her Autism and how she dares to tell the world that there is nothing wrong with her, but that she is simply different. She is the change in the world that I feel we desperately need, and I think she has a wonderful impact on society.
  • JamisonWrites.com – I have just started to follow Jamison but his story is truly incredible. When I read his about section, at first I thought, “why on Earth is this guy following me, he’s exactly the opposite of everything I am.” As I continued to the end of his about page, I was floored by his real life plot twist. Turns out, we have more in common than I could have ever possibly imagined.

Lastly, thank you to the person who also nominated me months ago, I feel terrible that I cannot remember who it was and cannot find the notification, but I promise it means so very much to me that anyone would even think of my blog to nominate. This blog has been, especially this year, the highlight of my life. I am tremendously thankful that I have a following, that people enjoy my blog and actually want to hear my stories. I’m also thankful for the friends I have made and the stories I’ve been fortunate enough to hear from others. I hope that more of all of that keeps coming my way.

From the bottom of my heart, a thousand times over, thank you.

 

 

Eleanore Vs. A Duel with her Lunchbox

Dear sentient creatures who require nourishment in various forms,

This morning I had several miniature battles. First was the battle of getting out of bed on a cold day. Each time I thought, “I should really get up,” I burrowed a little deeper into my blanket burrito, because I love to be warm and hate to be cold. I eventually convinced myself that the sooner I leave the warm, the sooner I may return to it. Then there was the battle of how to style my short hair, which I never seem to win. As my pain and sickness began to rush into my body as they do every other morning, I went about the house continuing my morning ritual.

As I put my lunchbox together, I realized something that I believe I have felt for years; I really, really fucking hate having to pack my lunch. In fact, I loathe the action so much I actually did the dishes before packing so that I could put it off a few more minutes. That’s how much I despise having to deal with my lunchbox.

Being the Eleanore that I am, of course, I became obsessed with trying to figure out why I am so loathsome about having to pack my food. I knew it wasn’t because of the food I was gathering; I’ve become a pretty great chef (at least, so I think).Finally I realized the reason I constantly duel with my lunchbox is because most others simply don’t have to, and every time I have to do so, it yet another reminder of how different I truly am.

Not only do I have Celiac disease, but as a symptom of both that autoimmune disease as well as Chronic Fatigue Syndrome, I have 13 other food allergies. About 80% of those allergies can be potentially fatal, as proven by my 16 episodes of anaphylaxis. As you can imagine, having all of that working against me makes it extremely difficult to eat anywhere save for my own home. No matter where I go or for how long, I must always have enough food to get me through whatever the day consists of.

Back home in California there was a magical place known as In-N-Out burger. It was the only place in California, aside from Zest Bakery in Menlo Park, that I was able to eat at. As much as I loved Zest, it was quite far away from my home, and there was only one of them. The entire state was polka dotted with In-N-Out Burgers, which meant that regardless of where I went, at least for a few meals, I could count on them. While eating burgers and fries isn’t the healthiest option in the world, it was nice to have them to rely on if I was too tired or accidentally messed up a meal plan (which I still do more often than I should).

Now that I live in Missouri I am without my beloved double-double. There are a few wonderful bakeries here that cater to gluten free people, but as much as I like to think it’s possible, I can’t survive on cinnamon buns and cupcakes alone. Wait…can I? No. No I can’t, but a girl can dream.

It’s true that it is probably better for both my health and my bank account to bring home made food everywhere I go, but that’s not even the part that troubles me. What I find myself so frustrated at is the fact that as someone with a plethora of chronic illnesses, I don’t have much of a choice. I either bring my own food, don’t eat at all, or take a risk likely to land me in the hospital. Out of those options, clearly, bringing my own food is the safest.

Those who are fortunate enough to not have Celiac Disease, severe food allergies, or other illnesses that restrict their diets so severely often are not aware of how privileged they truly are. An average person can eat whenever and wherever they want and they don’t have to talk to managers or call ahead only to still be left without anything safe to eat. They don’t have to deal with the anxiety of trying something new, wondering if it will ruin their day and leave them hospitalized. Average people also have the luxury of getting food already prepared from any place they wish on days they’re sick, exhausted or have been running around all day. On my worst days, when I can barely walk, if there isn’t food ready from a different day, I either have to cook or beg someone else to for me. There is no way around it. If I don’t cook, I don’t eat. Even hospital food is unsafe for me to eat; for every night I’ve been in the hospital, I’ve had to either starve through it or someone close to me would have to rush to get me a makeshift bunch of meals.

The last few years I have become truly passionate about cooking and I’m thankful that I have been blessed with some of my grandmother’s gift for making wonderful meals. I try not to dwell on the negative and keep looking ahead, but on days such as these when I’m burned out, I can’t help but wish I didn’t have to cook. Nearly every time I explain to someone my restrictions, the first thing they ask is, “what do you miss eating the most?”  I come up with some random answer, but in reality, there isn’t any one food I long for. Rather, it’s the ease and simplicity of being able to go to a restaurant or being able to order food at home that I miss the most.

Now that all the gloom and doom is out of the way, rejoice, for this post isn’t totally hopeless. When I was 15 I began to suffer from anaphylaxis, and because many times the trigger wasn’t clear, I was told to stay away from many foods just in case. When I was 18, my allergen list was up to 13, and I was then diagnosed with Celiac Disease, and my foodie personality said, “peace out!” as it skipped town. My entire world had begun to revolve around food, yet eating was a living nightmare. Everything either had something in it I could not have, and even if I could have it, the anxiety of possibly having a Celiac reaction or an Anaphylactic response terrified me to my core. I was hungry and miserable sitting in a house full of food that I could have none of.

As I began to understand my illnesses more, got medical help and learned more about my special dietary needs as well as how to cook in general, things got better. I began to take pride in my cooking, and when I succeeded in making something new, I was ecstatic, singing and bouncing about my kitchen. Oh, who am I kidding; I still sing and bounce around my kitchen when I make something delicious, even if I’ve made it a thousand times before. I just love food.

Though it took an inhuman amount of patience, slowly but surely I started to enjoy what I was eating again. I went from only eating plain chicken and rice for a year straight to being able to cook beautiful dishes from all sorts of cultures including both of my own. I wouldn’t say I’m good enough to be an Iron Chef or anything, but I’d be lying if I said I wasn’t proud of myself for how far I’ve come.

For those of you newly adapting to life with dietary restrictions of any kind, believe me when I tell you I know how discouraging, scary, and frustrating it can be. While it’s never truly effortless, I promise you, with time and work you will get better at managing your diet and will once again be able to enjoy your meals. While it’s understandable that you may become exasperated, don’t give up for good. There are some Celiacs, much to my horror, who still eat whatever they want. Personally I think this is an incredibly idiotic thing to do, and I don’t know how they do it when the times I’m unlucky enough to eat something with gluten I vomit, am flooded with pain, get a horrible rash all over my legs and am rendered basically useless for the next few days.

It certainly sucks a bit to sit in a restaurant with friends or family and not be able to eat while everyone else is. I have learned that my desire to fit in does not outweigh my desire to remain healthy and not hospitalized. It’s difficult to be different, but once you get the hang of your new life it is highly rewarding and your body will just love you. I never want to experience anaphylaxis or a Celiac reaction again. Ever. If that means having to pack my lunchbox every time I go leave the house for a long period of time, then it is worth it. Maybe it will help if I just get a cuter lunchbox.

Would it be weird for a 26 year old to have a Ninja Turtles lunch box? And are we absolutely sure I can’t live off cinnamon buns and cupcakes?

I won’t settle, settle, settle,
You are never gonna hold me down.
So toxic, you ain’t nothin’ but a prick,
I’m the best thing that never happened to you,
Never, never, never, you are never gonna live this down,
Life’s too short, I can’t fake it anymore,
I’m the best thing that never happened to you.

~Best Thing That Never Happened To You- We Are the In Crowd (I like singing this to foods that I can’t eat).