Widely Debated, Still Existing

Dearest readers,

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

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

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

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

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

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

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

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

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

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

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

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

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

Lonely is a Strong Word

Dearest readers,

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

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

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

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

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

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

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

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

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

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

Hidden Hope

Dearest friends,

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

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

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

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

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

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

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

 

 

Please Read This Fancy Thing!

Dearest friends and readers,

I have been missing in action for far too long due to a combination of  a Chronic Fatigue Syndrome relapse and a bout of Carpal Tunnel that together, made my hands less than operable and filled with fiery needles. This was difficult for me for all kinds of reasons, especially since I had been waiting to announce a special thing. I present to you now, that special thing:

Not that long ago, in a galaxy far away called Missouri, I decided that I wanted to take my site to the next level. I honestly didn’t think I could create something more, so I spent quite a few days glaring at my computer screen, wondering if staring at my blog for long enough would turn it into what I hoped for. Unfortunately, the glaring did not work; however after complaining to two friends about my frustration, they both kindly offered to help me. Thanks to my darling friends John and Bre, as well as the power of friendship, a star was born.

Okay, I’m being extremely dramatic; I’d apologize if I didn’t enjoy it so much. A star may not have been born, however, Sicklystardust.com was, and that is also pretty fantastic. I am so pleased to be able to finally announce this!-Bre and I spent much time and love on this site, and I’m quite proud of what it has become. 

Those of you who already follow me, I have migrated my followers, so you should still receive my posts and be redirected to my site (if it doesn’t work for some reason, please let me know! Small changes may still be needed!)

I created this blog to share my experiences so that others such as myself feel more understood and less alone. Though sometimes the topics I write about are complex and not always the happiest, I hope that love, understanding and compassion is ultimately spread through my writing; and of course, some laughs always help too, even in dark times.

For those who support me in all sorts of ways, thank you. You make it so much more pleasant for me to be, well, me.

Click here to be transported to the new site, and let me know what you think! 

 

Eleanore Vs. Nobody Cares

Dearest readers,

My life recently has been intense to say the least, but now it’s settling down and I am relieved. The past week I have been even more full of anxiety than usual topped off with sheer panic about anything and everything. I have felt lonely despite being surrounded by incredibly loving people, my depression creeping up on me like the wicked Dementor that it has become. Though several of the stressors have now subsided, my panic is still here and as always, my anxiety disorder isn’t going anywhere. I think I need a million hugs.

Thankfully, I spent a mostly calm weekend with my boyfriend. I was laying in bed, waiting for him to shower as I  scrolled along Facebook when I came across a link that had to do with anxiety and relationships. It seemed right up my alley, so naturally, I clicked it. Within the article was a quote that instantly brought me to tears, for the truth of it stung at my heart. I can’t find the exact quote or article, but I still have that first sentence fresh in my mind:

People who have anxiety disorder are convinced that at some point, everyone will leave.

I was stunned by how one sentence could relate so much to one of the darkest parts of my mind that I often try to stifle.  To add to it, John Green, an author who suffers from Obsessive Compulsive Disorder, said that when it comes to mental disorders such as mine and his, you must come to the realization that your brain lies to you constantly; and he could not be more right.

My anxiety and depression cause my brain to lie to me incessantly. Whether they are telling me I’m physically unattractive or screaming that I am not good enough for anything or anyone, they never quiet. They force me to rethink and constantly doubt, always feeling unsure about myself. When I commit to any outward expression of myself, my mental disorders instantly reply, “nobody fucking cares. Why are you even trying?”

Most recent I have noticed this with social media. I am painstakingly cautious about what I write and post, and even still, I have to look at each picture or read each post a dozen times over to be sure I want it to be seen. I regret nearly everything I do and constantly question every single word I post, wondering if it is important enough or clever enough to be read by others without wasting their time. At least a few times a day, I will write a post or a blog and then quickly delete it, because my brain convinces me that nobody cares.

Having an anxiety disorder makes it so that trusting anything is a difficult feat to accomplish; but the fact that many times I am afraid I can’t even trust myself makes everything far more difficult. The worst part of all is that I am fully aware that my brain is doing things wrong and isn’t working properly, but I cannot seem to stop it.

A while ago I was talking to my counselor about all this, and she suggested that anxiety disorder is much like a Chinese finger trap. The more you pull, the more tension you create. Since I’ve lived nearly 27 years with the illness, I’ve come to realize that she is incredibly accurate in her statement. In the words of the Borg, “resistance is futile.” Who knew they all had Generalized Anxiety Disorder?

If that is the case, I am left in a conundrum, because a mental disorder has a firm grip on my brain, but any attempts to fight it only makes the grip tighter. It seems the third option, and only way to actually get better, is to teach myself to turn the mental tables on my mind. To begin to tell my disorder what it has always told me. While it may take years of practice to get it right, at some point, I may be able to have a thought, and let it pass rather than latching onto it and obsessing for days, letting it consume all my other thoughts making it impossible to think clearly.

I look forward to the day I am able to tell my disorders with confidence, after all it’s kicking and screaming, “you know what? Nobody cares.”

Dig down, dig down, dig down,
And find faith.
When you’re close to the edge,
With a gun to your head,
You must find a way.

~Dig Down – Muse ( I encourage everyone to watch this video featuring the gorgeous Lauren Masser, a disabled actress/model).

 

 

Eleanore Vs. Sleeping Life Away

Dear sleepy things, awake things, and things that are somewhere in the middle,

I am currently sitting next to this sweet, sleepy little marshmallow, and he has caused me to think about my own relationship with sleep; so far, it has not been pleasant. I never remember a time in my life when I had a regular sleeping pattern. I have always slept far too much or too little, and no matter which it is, I never feel rested. Last year I was diagnosed with Myalgic Encephalomyelitis, more commonly (and ridiculously) known as Chronic Fatigue Syndrome. Though I was diagnosed with little explanation of what it meant to have this disease, upon my own research I found out that most sufferers of CFS/ME have the same problem. Sleep just doesn’t seem to like us.

In fact, one of the symptoms of CFS/ME is sleeping for as long as you like and still feeling as if you have barely slept at all. Considering I also have anxiety, depression, and a slew of other illnesses, sleep has never been my thing. This is unfortunate as I am a human, and need sleep for, you know, human reasons. This also means that I can only go so far before I inevitably run out of energy. To replenish my energy, I have to drop everything on my “to do” list and take a nap. Some days my naps are only 30 minutes, while other days they last hours, but no matter what one thing remains constant- I always wake up feeling guilty.

Most of my life I have been drowned by comments such as, “I wish I could stay in bed all day,” or, “I wish I could lay around and do nothing, but I have to go to work.” As I have said before, I would trade with that person in a second if it meant I would be healthy and able enough to work a steady, full time job. Each time I wake up from a nap, though I may have a tiny bit more energy, I feel dreary and heavy, my depression surging through me. I slowly check my phone, look at the time, and the same thought never fails to cross my mind – I fear like I am going to waste my life sleeping it away.

I’m often told how I don’t try hard enough or work as much as I should. Aside from this all being complete bullshit, I can’t help but think about my college days. At the time, I was taking a full course of classes, worked three jobs, and still had to do everything else to keep myself going. I was living in an abusive home, going to doctor appointments constantly, and was trying to survive through all my physical pain and business. There were nights I would be out from 7 a.m. to 8 p.m, then would come home to homework, cooking, and all the nastiness within my household. It was difficult to say the least.

To get through my days I would take any chance I could to sleep. I would sleep in my car in the parking lot of my college or I would take a nap at 10 p.m, wake up at midnight, and keep working until three in the morning until I finally got to sleep…before doing it all over the next day.  Throughout this period of my life I kept trying to convince myself what everyone else kept telling me; I wasn’t sick, I was just faking it. I could do all the normal things regular people do if I just tried hard enough. Turns out, I was extremely wrong, which doesn’t take a super genius to figure out.

You’d think being officially diagnosed with so many illnesses would be enough to convince me, but still I kept running. I fell into an even deeper depression, my anxiety was out of control, my physical pain was unbearable, and ultimately I ended up collapsing in the hallway due to sheer exhaustion. As I grew older and received more help for my mental and physical health, I finally accepted the lesson that life had been trying desperately to teach me, but that I had always ignored: I was not like everyone else, and I just had to stop pushing myself, or I would not survive.

As I grow I have learned that the only way I’ll ever be happy is if I come to terms with the fact that I operate differently than others. I need stop resisting my body and learn to move with it, rather than against it, and often that means resting when needed. I’m beginning to understand that when it comes to chronic illness, part of being well is having compassion towards yourself and towards the fact that though others may not be willing to understand you, you have the choice to understand and love yourself.

I encourage you, dear reader, as I encourage myself, to give yourself grace and compassion in every way you can.

I’ve become, a simple souvenir of someone’s kill.
Like the sea, I’m constantly changing from calm to ill.
Madness fills my heart and soul as if the
Great divide could swallow me whole, oh how I’m breaking down.

~Sleeping Sickness – City and Colour

 

Eleanore VS. An Unedited Notice, Straight from her Heart

Dearest readers,

This post is going to be extremely different than my usual ones. Today I am on bed rest due to a Chronic Fatigue Syndrome relapse. As I lay in bed, hyper aware of the pain surging through me and the weakness weighing down my limbs, I can’t help but think about the oh so many people that are convinced that CFS/ME is not a real disease.
 
I try so hard to be a positive person, and most days I succeed. But days such as these are a struggle in every way, and to struggle physically and mentally while constantly being reminded that many people think I’m faking it is a little more than I can take at the moment. Even typing this out is painful, yet I feared if I didn’t I would simply burst from it overtaking my mind.
 
I don’t understand why would people think I want to pretend to be the way I am. I’m baffled that they do not realize  I spend so much time wishing myself into oblivion, wishing my life was different. Why do they think I’d rather stay in bed then work, or have fun, or deal with the billions of things I have to take care of? I’d chose your 40 hour work week over my plethora of chronic illness faster than a single beat of my heart. But I’d doubt you’d want to trade.
 
Often I dream of a magic serum I could invent, where I could inject someone with my illnesses so that for just one day, they would truly understand what it is like to be chronically ill. Not to cause them equal pain, but to open their eyes and obliterate their ignorance. I just want to be believed in and supported.  Is it really too much to ask to stop being called a drama queen, a victimizer and a liar while battling my health? 
 
I’m so tired of having to prove my sickness. Chronic illness isn’t all of who I am; but it is a part of my life that should be acknowledged and believed in. I want to be loved for who I am as a whole, not only what I can or can not do. I’m utterly exhausted of trying to prove myself in every single way, whether it is to prove I can overcome my sicknesses some days, or to prove that I have them at all. Either way, I am doubted. 
Please. Listen. Please.

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.