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 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).  

 

 

Eleanore Vs. Wanting It All

Dear sentient creatures made up of many wonderful things,

Last night I went out to my friend Nat’s birthday dinner and it was fabulous in every possible way. I met so many lovely people and had interesting conversations. It wasn’t until I was on my journey back home, staring into the clear night sky striped with lightning, that I realized my incredible friend Nat did something for me that no one had before.

As adulty adults, it is common in a social situation to ask a person you haven’t met before, “what do you do?” Personally, I’ve always abhorred this question, but I understand that it is used as a way to giant penguin the situation (break the ice) and find something to converse about. I was asked this several times last night, to which I responded, “I’m a receptionist.” The third time I was asked Nat heard it, and before I finished my mundane reply, Nat said loudly, “she’s a writer!” The people I was talking to seemed to be excited by Nat’s declaration, and we ended up talking about my writing. I was thrilled, passionately spouting about my writing and my intention to have it at some point engulf my entire life.

As Aaron, Charlotte, and I drove home, I was hit with the realization that I had never, ever been introduced as a writer. Nat doing so not only sent fireworks into my mind and heart, but it also made me feel so much like myself.  I was especially thankful that I was not introduced at this dinner party like I have been at too many others; the girl who cannot eat anything in the entire restaurant because she’s “allergic to everything” so don’t touch her because she’ll most likely die.

This morning I couldn’t stop replaying this moment in my head. It had my mind spiraling and calculating and imagining, and all of that eventually lead me to one of humanity’s greatest questions: Can a person truly “have it all?”

Growing up in a close-minded family I was taught what far too many others were. You must choose one path in your life and it must be reasonable. If you change your mind or have multiple paths, then you’re deemed inconsistent, unreliable and have no idea what you are doing. And of course, if you don’t have a degree by the time you’re 30, you’re a complete and total failure. There isn’t much wiggle room with that line of thinking, and if you know me at all that’s a big problem, because I’m an extremely wiggly person.

For three-fourths of my life I truly wanted nothing more than to be an actress. But I also loved visual arts. I also loved writing. I also loved music. I also loved all kinds of other subjects…and I wanted to pursue them all. I was constantly reminded that I was not being realistic and that my head was perpetually “stuck in the clouds,” causing me to be an utterly hopeless human being in the eyes of my relatives. Through all of the awfulness, my grandmother’s soft voice occasionally broke through. She instead would tell me, “why don’t you do something with you talent?”

The general consensus of humanity tends to be, “choose one route and stick to it for 60 years until you die.” Those who diverge from the paths they first chose or have multiple ones are seen as unique and brave, and we are told by the media, our parents, and most people around us that the rest of us just aren’t that fantastic.  I can’t tell you how many times I’ve told strangers I was communications major or a music major and was met with an awkward and flat, “so…what do you do with that?” As if I just admitted to them that I had a full length tail hiding underneath my skirt.

I still delve into a each of my passions and  I really have no reason not to. I can totally be a painting, gaming, cooking, fashion loving, musician writer and it should be completely acceptable. Having multiple paths in my life by no means prove that I’m indecisive, confused, or messy. If anything, it should show the world that I am passionate about life as a whole, and that I am trying to get as much out of it as possible. I’m not the only one, either. There are countless people of note who prove that having one path isn’t the only way to live a human life.

One of my favorite humans in all the land, the Vlogger Olan Rogers, now also works in animating, stand-up, filmmaking and opened a Soda Parlor in Memphis that is also a small arcade.

Audrey Hepburn was known for her astounding beauty and the films she starred in. She was also a goodwill ambassador for UNICEF and traveled in order to help suffering countries with food, clean water and immunizations. Four months before she died, she traveled to Somalia.

Harrison ford was both a space cowboy who fought against the Empire and the world’s greatest archeologist who could get out of any situation except snakes…well, okay. Maybe that’s not the best example. But you get my point.

Not only is having multiple paths in life awesome because you constantly learn about whatever you are involved with, but you also begin to learn about yourself. Sometimes learning about yourself can be frightening, as it’s possible to discover that the path you thought you were destined for isn’t all you hoped. At that point, you must make a choice. Do you stick with what you are no longer passionate about simply because it may pay well or because you put a great deal of work into it and don’t want to feel like you failed, or do you scrap it and start over somewhere else?

As my life carries on I have discovered on many accounts that something I was hoping to be my life’s work was something that I couldn’t tolerate. I wanted to be an actress for 18 years until I became more sick and realized I could no long meet the demands of the job. I wanted to be a bridal consultant until I realized I couldn’t relate to the inside world of fashion, and was better off adoring it from a distance. I wanted to be an interior designer until I realized the job was very mathematical where I was not (sorry Finn and Jake). When  I was extremely little, I wanted to be a newscaster, until I realized that my heart was way too squishy to deliver news about various tragedies each morning. I was disappointed when I realized that these jobs weren’t for me, but I don’t think I failed at them. I simply didn’t fit, and that’s alright.

The failures and successes in our life are equally important. Both help us uncover a few more puzzle pieces that we can click together, leading us to understand who we are and what our lives are all about. The click doesn’t always come easily or painlessly, but it does happen. While it is much easier to have one solid path that you never doubt, having multiple doesn’t make a person any less put together or any less intelligent.

Of course, being stretched too thin is always an issue. I’m slightly frustrated every single day because I cannot fit everything I want to do into 24 hours, yet the days I do manage it I end up dead exhausted, especially considering the whole chronically ill thing. I am also starting to comprehend that patience is even more valuable than we were taught as children; patience is everything. It’s how people are able to create astonishing pieces of human history. Through all the hard work, successes, path changes and failures, patience makes us resilient.

So back to the main question. Can a person really “have it all?” Well, to be honest, after writing 1372 words on the subject (now 1377), I still haven’t the slightest idea. Life usually calls for a great deal of sacrifice, and we eventually have to decide what we are willing to sacrifice and what we are not. Those decisions include a good amount of heartache sometimes. We may not be able to have it all;  but what we end up with may be better than what we hoped for in the beginning of our adventure.

I’d like nothing more than to continue to be a gaming, cooking, fashion loving, musician artist writer. So far, most of those titles are slowly being smooshed into one shorter title: Blogger and Vlogger, as both of those incorporate every one of my passions.

That’s still a bit of a mouthful though. So for now, I think I’ll just stick with my official title on my Facebook page: Alien Stardust Princess, Creator of SicklyStardust. That just rolls off the tongue, don’t you think?

The summers gone, the years have passed,
My friends have changed, a few did last.
The smallest dreams got pushed aside,
The largest ones that changed my life.
And all I wish for has come to pass,
From Rock N Roll, to love and cash.
It’s all success if it’s what you need,
Do what you like and do it honestly.

If I had a chance for another try,
I wouldn’t change a thing,
It’s made me all of who I am inside.
And if I could thank god,
That I am here, and that I am alive.
And everyday I wake,
I tell myself a little harmless lie,
The whole wide world is mine.

~Rite of Spring – Angels and Airwaves 

Eleanore Vs. Deathly Allergies

TW: Death, allergies, bugs, close calls

Dear darling friends who are non-Hymenoptera (A.K.A Wasps),

Here’s a fact about me: I fucking hate bugs. Bees, spiders, roaches, house centipedes (which I didn’t even know were a thing until I moved to the Midwest, but they look like mustaches…of doom). You name the bug, I probably despise it. Even butterflies aren’t exempt from my hatred; while I’m not afraid of them, their incessant fluttering makes me nervous.

However, out of all the bugs to ever bug, the ones I hate most are wasps, hornets and bees. Not just because they are creepy and crawly. I am terrified of them because not only do their stings hurt, but for me and others like me, their stings are deadly. One sting from any wasps, hornets or bees, and I go into Anaphylactic Shock, a potentially fatal (and agonizing) allergic reaction.

I’ve personally experienced Anaphylaxis 16 times, which means that I’ve nearly died 16 times. My throat swells so I can’t breathe, my eyes and lips swell, I turn pale and become covered in bright red hives, gasping for breath as I feel my body shutting down. It’s a horrifying experience. Patients such as myself are told that once an episode starts we have only 20 minutes before we stop breathing and fall into a coma, inching closer to death. After each episode I prayed to every god and goddess I could name that it would never happen to me again.

Whiiich brings me to why presently, I am more paranoid than James Franco in Pineapple Express, because since I have lived in my apartment, I have had too many days in which I hear a gentle tapping at my window, only to pull the curtains to the side and find that a wasp has infiltrated my home. I live in a shotgun style apartment, which means it’s small and only has two doors separating three sections. One of those doors doesn’t work; therefore if a wasp is in my home and I’m alone, I have to relinquish basically my entire apartment and sit in my kitchen as I battle a panic attack until a friend comes to save me.

There have been several times when thankfully I was able to call for help, either from my landlord or my friends Charlotte and Kim. There have also been times where it seems everyone in the world is occupied, which then leads to my boyfriend irritatedly (but kindly nonetheless) driving the 30 minutes back home to rescue me. Most recently, I found a wasp early in the morning, and though my landlord came up he couldn’t find it. The moment he left, the wasp came out of hiding, which launched my first panic attack of the day. My boyfriend was on the way to rescue me, and we were both determined to stop the wasp invasion once and for all.

Of course, after all that and an hour of us searching while I had my second and third panic attacks of the day, the wasp was nowhere to be found. My boyfriend had to go back to work, so he used all his strength to close the broken door that lead to our bedroom and left me to distract myself with Jane the Virgin. The whole day I was terrified and paranoid. Every little click sent me into a frenzy and every few seconds I was checking the windows because wasps seem to be enamored by them. The wasp never came back and my anxiety never went away.

I’ve told many people about this and nearly every time I’m blown off as a stereotypical squeamish girl. I admit, part of me is. But again, the wasps in my apartment would scare me significantly less if my life wasn’t threatened by them. Again, I’m not being dramatic. As I said before, anaphylaxis is life threatening. Add to this the fact that I have no insurance and already have a large amount of medical debt, and top it off with the clusterfuck cherry on top that is big Pharma and the greedy bastards that could care less about whether sick people live or die. With my insurance, my Epi-Pens were 12 dollars. Without, they just have increased to 500 dollars each, and patients with anaphylaxis are required to buy two per year.

In a stunning turn of coincidence, a friend on Facebook just yesterday posted this article detailing the spike in Epi-Pen prices and how those such as myself are struggling with it. The fact that a life saving device has had a 400% increase in price within the last few years is heart wrenching and I am terrified because after this year, for the first time since I was 15 years old, I will not be able to afford Epi-Pens and will need to live without. So, that means if I end up going to anaphylactic shock and the ambulance takes just a bit too long to get to me, I could die.

I’m scared of wasps. I’m scared of apples. I’m scared of sulfites and mushrooms and my other 12 allergens and anything that I haven’t cooked myself. When I was 21, a glass of water with microscopic residue was enough to send me to the hospital mid-anaphylaxis. I’m especially disappointed that next weekend for my friend’s birthday, we’re going to a restaurant that has a dedicated gluten free section because the owner’s daughter is a Celiac. My friend who is gluten sensitive has already eaten there and swears by it. Even still, especially after my severe allergic reaction to Lexipro, I will sit there and eat nothing. My disappointment is always outweighed by the possibility of anaphylaxis, and now that I don’t have the money or insurance to even pay for the help I need, I’m more terrified than ever.

Between this health issue and all my others, I live in a constant state of fear. I’m scared at all times because I never know when my life will be threatened by either a wasp that somehow made its way into my home, something getting into my food or even my Vasovagal Syncope causing me to fall and rip the Syrinx in my spinal cord enough to kill or damage me permanently. I am always frightened and living this way is more stressful than most could imagine.

This is what many who know me can’t understand. I’m not sure my landlord does either, though he is always kind and comes up when he’s able to in order to destroy the invader. But through all the jokes in the media about nerdy kids who can’t eat anything, all the gluten jokes, and all the movies in which a character accidentally falls into a wasp nest to invoke laughter, I wish more than anything else that people would take life threatening allergies seriously.  It isn’t a joke or an easy laugh. It’s my life, and it’s a strenuous one.

Pharmaceutical companies and medical companies don’t give a single fuck about whether I live or die, and every day I am reminded of that. Each time it breaks my heart a little more, adding another fracture to so many already there. If anything, all I ask is that my friends and those who know people such as myself try to allow themselves to experience some empathy, and imagine for a second what it’s like to be me. To imagine what it’s like to be scared every time I put food into my mouth, even the foods that I’ve eaten for years. To try to understand how frustrating it is that a small insect is so threatening to me that I have to leave my own home if someone can’t come to my rescue. To be scared constantly, and then be told that half the world doesn’t take you seriously while the ones that do understand the gravity of the situation don’t care, because they’re blinded by money, and if I can’t pay, my life is worthless.

I have many dreams and many parts of a life that I’d like to accomplish. But most of all I simply would like to live a long, healthy, beautiful life and grow old. I just want to live and experience as much as possible even with my illnesses. Every time I see a wasp or anything else that is life threatening, I’m afraid I’ll be robbed of the remainder of my life. I’ve felt myself dying before. I’ve seen the tunnel of light, and I am so thankful that I was able to come back, that I always had an Epi-Pen, and that the ambulances always came in time to save me. However, there’s always the fear that one day something will go wrong, and I’ll be stolen from the world too early. While I try to think positively, some days it is more difficult than others. Today is one of those days.

It’s not easy living this life, and it’s only gotten harder as I’ve grown. If only I had a Marvel-esque power that made me immortal, or at least a little more average. There are so many days I wish I wasn’t me and was more “normal,” and while I know that isn’t possible, I enjoy dreaming of a life significantly less terrifying than my own.

But at least I have things to write about.

P.S. 

Occasionally I read my posts aloud as it helps me to edit them and dissect them. I couldn’t finish reading this one out loud as I burst into tears. That’s how scared I am, and as I said before, my only hope is that people take this seriously. 

I’m going into a state of shock, I can twist, I can hardly walk
And I’m holding on for life, should I be concerned?

My eyes are rolling in the back of my head.
I’m black and blue and I’m in the red.
And the silence is so loud, should I be concerned?

We want to go to heaven, but no one wants to die.
Defy your judgement and demons,
And save your last goodbye.

~ State of Shock – Green Day

Eleanore Vs. Karma and The Whys

Dear lovely humans who are probably less lumpy than I,

This morning I began to write this post and in a turn of brutal irony had to stop because I had to go to the emergency room…again. Thankfully this was my shortest visit I’ve ever had. Normally they last anywhere from 10 to 30 hours. I was there for only two, which was absolutely fantastic. What was less fantastic was the reason I went. While it’s somewhat unclear, I may have had an allergic reaction to my new anxiety medication, Lexapro (I wrote a whole post about how afraid I was of this very thing happening to me. You can about that here). I was so happy because after a few days of it making me tired, dizzy and nauseated each night, I finally started to adjust to it and I thought it was starting to help. That is, until I woke up with large lumps on my legs and a slightly swelling face. I was given a shot in my hip of an insane amount of Benadryl and was sent home to hibernate like the depressed, lumpy little bear I am.

Before this mini clusterfuck began, I was inspired to write this post by one thought that crosses my mind almost daily. While the exact wording often changes, it always has the same general idea behind it. “Did I do something to deserve my pain and sickness? Why couldn’t I just be like everyone else? Is this my fault?”

There’s two parts of this thought that need to be dissected, so put on some goggles and a lab coat, because we’re about to get messy! (Not really…I’ve just always wanted to say that).

Karma

Far too often those who are chronically ill try to understand why we were made the way we are. It’s a mystery as to why we must endure pain, sickness, hospitalizations, surgeries, ambulance rides and all the other severely unpleasant events that we go through as chronically ill people. Of course, the easiest way to understand “the why” is to assume that obviously, we did something terrible and this is our punishment. People are especially fond of the idea of Karma, the idea of “what comes around, goes around.” If you do something awful, something awful will come back to you.

The problem with this is basically everything. All too often the idea of Karma, especially by Westerners, is sorely misunderstood. Most people believe that this trade off is immediate; for example, a car cuts you off on the road, then gets cut off by someone else. That’s obviously Karma, right? Not really. In fact, if you Google Karma, the first thing you see is this:

Karma

As you can see, the magic Google machine tells us that Karma is the sum of our actions that will effect our future existences. I am starting to constantly remind myself that while I am a firm believer that people in this current existence are absolutely impacted by the positivity or negativity they put into their lives, the fact I did some shitty things as a child does not mean that I deserve to be sick now.  It’s incredibly unfair and illogical of myself and others to blame me for my illnesses. My family frequently blamed me for everything I deal with, called me a burden, or even worse, thought I was faking everything.  Not only do I think that no one deserves to go through what I do, (even people who I think are especially awful), but believing my illness is some sort of energetic punishment does nothing for my health.

If anything, it only worsens my depression and anxiety, makes me despise being sick even more, and worst of all, plants the seed in my head that maybe, just maybe, if I’m an extra good girl, I’ll magically be cured of my illness. Regardless of how good of a person I am, I am always going to have my illnesses, not because I’m deserving, but because I have them and they are incurable. Furthermore, people should never, ever be kind or good in order to receive a reward, whether they think that reward is admittance into heaven, the cure to their illness, or whatever else they desire most. People should be good because doing morally good things and helping other people is simply the right thing to do.

The Why

So now that we’ve discerned it isn’t Karma making chronically ill people and I sick, we’re left with the basis of the question, “why?” If it isn’t Karma, there must be some other reason. If there’s one thing I want more than being well, it’s to at least have answers. If I’m going to suffer, there better be a good fucking reason for it.

Unfortunately, there just isn’t. Since I was a child I’ve been craving an explanation; some way to make sense of the fact that my life has been mostly pain and struggle from the very start. Not only with my illnesses, but with my family, my friends, boyfriends, money- pretty much every part of my life is dysfunctional. I’m often discouraged by the fact that while I seem to to be working a hundred times harder than others around me, I’m only half as far. It makes my heart sink feeling like no matter how hard I fight I get nowhere, or only move an inch while those around me are light years ahead.

If anything, I might be able to blame part of my struggles on my abusive parents, and I can attribute much of my illness to a rotten mix of genes. But even after that, there is still so much left unexplained, and the truth is I may never have my answers. Regardless if you are religious or not, spiritual, scientific, or not sure where you are or what you believe in, no one has these answers. Some people may think they know the answers, but their opinions, no matter how hard they defend them or however loud they scream them, are still just that; opinions.

One thing I am 100% sure of is that regardless of who you are or what your diseases are, your illnesses are not your fault. Let me say it louder for the whole fucking universe to hear:

YOUR ILLNESSES ARE NOT YOUR FAULT.

While of course we should be as proactive and do what we can to live the best way possible with our conditions, we are only given so much control over our bodies. I check my blood pressure obsessively, drink tons of water, eat as much salt as I can, and do everything else that doctors tell me to do in order to control my hypotension. However, even with all that I put into action, I’m still going to pass out when my blood pressure gets too low, because I don’t always have a say in what my body does.

The best thing we can do as people who are chronically ill is control what we are able to to the best of our ability, and let go what we cannot. I tell people who aren’t sick how frustrating it is to not be able to trust my own brain and body sometimes, because again, I don’t have much control over most of my illnesses. Most people don’t understand what that’s like, and I certainly don’t wish illness on any healthy person, but it is absolutely true that to some degree I am at the mercy of my illnesses. If I try to control more than I actually can, I will be driven insane and become more unwell. We have to let go what we cannot control. Easier said than done, of course, but most facts of life are kind of ridiculous that way. We must stop blaming ourselves for the fact that we never got a say as to how our health turned out.

I can’t speak for the past life Eleanores (or is it Eleanori?), but this current one is trying to make the best of her life, even will all 15 of her diagnoses and even with every bullshit struggle that comes speeding her way. She also doesn’t like writing in third person very much, but she found it necessary just this once.

Now you wait for something to cure this,
Well I’m here, under your downpour.
It’s not your fault so please stop your crying now.

~It’s Not Your Fault – New Found Glory

 

 

Ellie Vs. Food

Hello darlings,

I am hoping all of you are reading this from safe, snuggly blanket burritos, because it has become apparent that a giant Snow Golem has decided to go crazy and unleash a metric butt load of snow on parts of the United States. And for those of you in other countries that are also dreadfully cold at this time of year, I hope you are well burrito-ed, too. The only thing better than a blanket burrito is eating a real burrito while engulfed in a blanket one.

If you haven’t noticed based on my constant mention of food and food related ideas, I absolutely love food. Unfortunately, food does not love me; therefore, it’s a bit of a complex relationship we share.

My diet growing up was a delicious array. I ate mainly Austrian, German and Hungarian food at home with my Austrian grandparents, not counting Thursdays in which the Red Baron graced us with his pizza presence. Due to the fact that I was raised half Muslim and Half Catholic because my mother converted to Islam in college,her friends were mostly Muslims from all over the world . One of her friends was African-American and cooked a mix of American and Arab dishes, while another couple were Indian and Pakistani, which meant they regularly filled me with samosa and biryani. On Eid al-Fitr, we would have lively celebrations at the city fairgrounds where there was a sea of homemade food. Dishes from many different Arab countries, Chinese food, Malay food, Indian food, and of course, you cannot forget Halaal Soul food. Because of the neighboorhood I lived in, I was also exposed to Vietnamese, Filipino and Mexican cusines as well.  My childhood was horrible in a number of ways, but the food and culture I was surrounded by is by far one of my favorite things about my past. And best of all, I had not one food allergy. Despite my many other illnesses, the only allergies I had were to plants, dust and cats, and I generally tried not to eat any of those.

And then, when I was fifteen, I had my first episode of anaphylactic shock from eating an apple, and I nearly died. Suddenly, I was deathly allergic to apples, pears, and all things birch. 

So, I had to be a little more careful and avoid apples. Not a big deal, right? I wasn’t particularly crushed by the fact that I could not longer eat apples, however I was slightly perturbed that my allergist told me that anaphylactic shock could happen to me again, and I now had to carry around an Epi-Pen. I went approximately eight months without an anaphylactic episode.

And then, it happened again.

And again.

And Again. 

I was consistently being terrorized by my own body. The episodes began to come every 3 to 4 months, and my list of allergens grew as quickly as Jack’s beanstalk. Every anaphylactic episode was worse than the previous, each one coming faster, with more hives, more pain, and more swelling, which meant I had less time to breath with each event. My doctor’s best advice was to adhere to my list of things I could not eat, and hope for the best.

After my high school graduation and my eighteenth birthday, my mother decided that my present for both would be to go to one of my favorite places in California; The Beach Boardwalk in Santa Cruz. One of my closest friends at the time, Marques, went with me, and we had a fantastic time. After a full day of sunshine, salted air, and mildly nauseating rides, we went to a diner to replenish ourselves before driving back down the mountain. At this point, though I had to be more picky, I was still able to eat at any restaurant. I ordered a cheap plain steak with mashed potatoes and veggies, which was something I ate many times at restaurants. I took my first few bites, unaware that those bites would be the catalyst that threw me into my now extremely complicated life.

After the third bite, I felt sick to my stomach, so I politely excused myself and went to the bathroom. I sat in the stall, sick and nauseous, but nothing happened, so I went back to my table. I took another bite of my food, and the moment the food entered my body, my nausea got worse. I began to hear a ringing in my ears, the kind of ringing one often hears in movies and shows right after a bomb goes off. I began to tremble, and felt like my skin was burning. I ran to the bathroom and tried to throw up, and I couldn’t. I scrambled for words to try explain what was happening to my friend and mother, but it was impossible to communicate. I felt as if I had no control over my body whatsoever, was horrifically ill, and absolutely doomed. I thought to myself, “I have just graduated. I just turned 18. And now, I am going to die in Santa Cruz.” I was quickly taken out of the restaurant and put into the back of our car, and as Marques held my hand, I continued to violently shake as we drove the windy road back home.

Not long after this episode it became the norm for me to get sick every time I ate, no matter what I ate. If it wasn’t an episode of severe nausea, tinnitus, and confusion, it would be anaphylaxis. I went to several doctors who were all puzzled, who resorted to testing me for every disease, disorder and syndrome possible. I’m honestly surprised I had any blood left in my body at all. Long story short (my diagnosis story is for another post because it is unfortunately more complex than it should have been), I was diagnosed with severe anemia and malnutrition.

And then I was diagnosed with Celiac Disease.

I find it incredible that if asked I most likely would not be able to tell you what I ate this morning for breakfast. But I remember, with impressive clarity, the last meal I had before my life was turned upside down. My family had gone in the summer to BJ’s Brewery in honor of my grandmother’s birthday. I ate a buffalo chicken sandwich, french fries, and part of my grandmother’s birthday Pazookie. After lunch, I went home and collapsed on the couch, unable to move, because my body was so worn, tired, and sick, that the simple task of going out to eat with my family exhausted me as if I had just completed a triathlon. At 18 years old, I was bone thin, with pale skin, dark, sunken eyes, and the inability to function at even 1/4 the capacity of an average 18 year old. I felt as if I was almost dead, and while this feeling had been titled Celiac Disease, Anemia, and Malnutrition, no one could tell me how to make it stop.

Painstakingly and slowly, once I figured out how to treat my illness and eat right despite my 13 allergies and autoimmune intestinal disease, I got better. I went from having panic attacks at every restaurant my family insisted I try to eat at, to cooking beautiful and fresh homemade meals. Just as I remember the last “old normal” meal I had, I also remember my first “new normal” meal. It was a plate of nachos with tortilla chips, refried beans, soy cheese, lettuce, and olives. At the time I could not eat dairy or tomatoes either, but damn it, those were great fucking nachos, and they were the first meal I had in nearly a year that didn’t threaten my life or cause my body to fall apart. When I was 22, the anaphylaxis finally stopped. In seven years, I had 16 episodes. Each episode could have killed me. I am extremely glad they all failed.

It is true that the main reason we eat should be for sustenance. That would make life much easier than it actually is. In reality, food is not just nourishment. It is how people share love, culture, and experiences together. It’s a reason for everyone to come together. I do not mind the fact that my disease and allergies make it so that I have to cook 99.9% of the food I eat because I cannot eat at most restaurants. It doesn’t bother me that I many times sit in a restaurant surrounded by people eating while I have nothing in front of me, because even a glass of water may contain something that would land me in an Emergency Room.

The main thing that bothers me about my disease, aside from the fact that I have an awful disease to begin with, is that I have to miss out on what it means to experience food. When I moved to Saint Louis, many friends wanted to take me out to experience classic Saint Louis foods, such as Gooey Butter Cake or what many here claim to be mind-blowingly great barbecue. There are also many days that I feel furious at the fact that I do not have the privilege of simply “picking something up” when I get home after a long day, because there is nowhere safe for me to eat outside of my own kitchen. No matter how sick or tired I am, if I don’t have something at home, I have no choice but to cook, for if I do not, the other parts of my disease come out to play, and make me even more ill.

There are many days when I think back to my childhood and how  privileged I was to be surrounded by so many different cultures that came along with so many beautiful kinds of foods. And yes, it makes me sad. However, despite my love for food, it is never worth the consequences that come with dismissing my restrictions. I am often asked if I “cheat” and eat the foods that I am not allowed to have once in a while. Some people with allergies or Celiac Disease can, but I cannot. Most of my allergies are truly life threatening, and I am the most Celiac Celiac one may ever meet, as one of my favorite doctors said. It has been proven that all it takes is 1/64 of a teaspoon of gluten to infect a Celiac. While that may seem impossible, as a Celiac, I can guarantee it really does only take that little amount to send me over the edge. I have eaten something that I had checked a thousand times over, or even made myself, and still ended up with massive purple blisters, tinnitus, nausea, vomiting, and confusion. Despite my affinity for delicious foods, if I have to chose between anaphylaxis, a Celiac reaction, or having to be a bit different than everyone else, I will happily choose the latter, and put on my apron.

While this all may sound like quite the bummer, some truly wonderful qualities have come from the battle between my love of food and my now not so new found dietary restrictions. When I first got sick, I remember my mother telling me soon after my diagnosis, “you better learn how to cook, because I will not be cooking for you.” While my cooking skills may have been cultivated out of desperation rather than passion, I went from cooking whatever would not kill me to not only rekindling my love for food, but intensifying it.

Now, not only am I passionate about what I eat, I am passionate about how I create what I eat. I am getting better at making affordable, safe, and delicious meals with every flip of my spatula. When my transition from allergy-free to allergy-filled started, I was apathetic towards food. I didn’t care anymore, because I felt as if my body betrayed me with every bite I took. I was constantly hungry with no appetite to vanquish the hole in my stomach. No matter what, there are still a few days that I feel nauseous, and I will always have to battle the symptoms of my Celiac Disease along with the rest of my diseases and illnesses. But if I am going to fight, I am happy to say I will at least be eating food that I take pride in making, that is healthy, and that tastes fantastic.

I may not be “normal,” or be able to do many things that most people don’t even give a second thought to, like dining out. But I have become healthier, a fantastic cook, and most importantly,  I can now make spectacular nachos. The proof is in the picture above.

I’m Queen of the world, I bump into things,
I spin around in circles.
And I’m singing, and I’m singing I’m singing,
Why can’t I stay like this?
Dear God, Oh, let me be young.
Let me stay, please. Oh let me stay like this.

~Ida Maria – Queen of the World

 

 

2 Player Mode: Ellie and The Easter Bunny

Just a quick little post to say Happy Easter to my dear readers. I Started this blog just a few weeks ago, and I didn’t think anyone would read it, honestly. But I have gotten a few followers and a few likes and I am so very grateful for every single one of you. Thank you for listening to me, and hearing my story. I hope everyone has a really lovely holiday, and if you don’t celebrate Easter, I hope you have a lovely day in general.

Last night I made a gluten free Easter Cake. Chocolate cake, filled with whip cream and iced with homemade buttercream. The eggs look a little weird though, because due to the whole constant awful pain thing, I was really exhausted and sort of forgot what eggs…looked like. I’m still pretty proud of it though, I think it’s pretty okay. I really need to learn to make fondant…That would make the world so much easier!

11008804_10206399043197692_2468313715277727036_n

I also made a huge mess in the kitchen. I usually do that, but it’s worth it. (Also, since this was a two layer cake I had to shave the bottom layer and got to eat all the shavings. You know…testing the cake to make sure it isn’t poison. I am a HERO, guys.)

I’m still on my horrible period, and my family is kind of insane and beyond overwhelming which makes most holidays a giant shitstorm, but I am going to try to take it as easy as possible and not lose my mind. But hey, at least there is cake involved. I’ll look forward to that. As well as going to take the leftover cake to my best friend later on. She usually makes everything a little better.

Happy Easter Everybunny! See what I did there? Every…bunny? Hehe. Okay. Sorry.

Ellie vs. The Allergist and a Sandwich

This morning I went to the allergist to talk about possibly having a C1 Deficiency. Not to my surprise, he wasn’t able to say that I did or did not have it. The C1 test results were low, but not low enough for a clear diagnosis. Basically, I once again got the diagnosis of, “I’m not sure, so let’s do more tests.” This particular doctor was a real sweetheart, though. He was attentive, understanding, and was empathetic to the frustration I felt about not getting a true answer. While it isn’t his fault, it was still wonderful to have someone else to understand why not getting a diagnosis can be just as disappointing as getting one, rather than just telling me to “be happy.” He ordered me more blood tests as well as a chest X-Ray so that we could dig deeper to figure this out. After that, I’m not sure what will be done.

I feel beyond frustrated right now. I wasn’t given a clear diagnosis, so I can’t do much about my pain, but he didn’t say that I didn’t have the disease, so I can’t even breathe a sigh of relief. Schrodinger’s cat is still alive and dead at the same time. I feel like I am floating around in purgatory with a friggin cat in a cardboard box. 

Onto the positive part of the day!

I live quite far from my hospital, so it’s a journey to go see my doctors. However, they’re the best doctors around here, so it is generally worth it. What makes the trip even more worth it is going to Zest Bakery. It’s about 20 miles always from the hospital, but it’s worth every stoplight to get there.

The whole place is gluten free, which is music to my ears, being the most Celiac Celiac to ever Celiac on the planet. They have pasta, pizza, an array of different sandwiches on several different kinds of bread, and my favorite, a shiny glass case of all kinds of fresh baked sweets. I don’t go often due to the fact that it’s far from home and also because it is very hard to resist not eating every single thing they make there, but when I do go, I assume heaven must feel just like this. 

This time I tried to practice a little more self control and only got a few desserts for the week as well as a sandwich. The sandwich is on Foccacia bread. I know right? GLUTEN FREE FOCCACIA BREAD. It’s tasty and soft without falling apart, and deliciously seasoned. If you are a Celiac or gluten free person, you know the struggle is real. Finding something that’s both soft and stable is nearly impossible, but these guys apparently make their baked goods out of magic and unicorn tears instead of wheat to keep it all together. That has to be the secret ingredient. I’m sure of it.

20150401_125630(0)

Look at this handsome sandwich. I’d marry it if it was a person. 

Where I live, we really don’t have a lot of gluten free places. And if a place is gluten free, I still have to worry about my allergies to other foods, so it’s even more difficult for me. Many places advertise that they have gluten free menus, but I’ve often found when talking to managers that having gluten free food and keeping it that way by not cross contaminating is not something they really think about. This presents a huge problem for me. I am so sensitive that even a microscopic crumb is enough to have me vomiting and breaking out in blisters within hours. So here, my only options really are In N Out Burger and Zest Bakery. There is also a place in my city called Gluten Free Gourmet, but I haven’t got the chance to visit them yet.

I think I have freaked out the owners of many gluten free restaurants in California, Missouri and Colorado. Eating at a restaurant is a rarity for me between Celiac and anaphylaxis. So, when I do come across a place that truly is safe for me to eat, I always make sure than I thank the owner (or manager) as well as the waiters. I want the managers, chefs and waiters to know that for people like me, who never feel safe outside of their own kitchen when it comes to dining, it is fantastic and exciting to feel safe somewhere other than home. I realize because of my personality and my anxiety, I sometimes come on a little too strong, and my excitement is off-putting to certain people. Nevertheless, I still make sure that the people in charge of handling my food know how important it is to do it right, and how thankful I am that they do. Not all of the people that work in these kind of restaurants actually have Celiac disease, so sometimes don’t fully grasp what it really is like. The average healthy person can go to a restaurant and get whatever they want without a second thought, and that really is a privilege that people like me do not have. If you or someone close to you works at a place that serves people with special diets, know that it really does mean the world to us, and we are thankful for your work and care. Even if I come off like an overly excited puppy, I hope everyone knows my thanks are always sincere.

I’m in a bit of a weird state of mind today. Days like this that bring me confusing information tend to make me hide inside my head and over think. That really doesn’t help the situation, but I suppose that’s just how I cope. By thinking and eating amazing food made by someone else other than me. (I like the second way of coping so much better). 

I’m a war of head versus heart, and it’s always this way
My head is weak, my heart always speaks
Before I know what it will say

And you can’t find nothing at all
If there was nothing there all along
No you can’t find nothing at all
If there was nothing there all along

-Death Cab For Cutie- Crooked Teeth

Ellie Vs. Hereditary Ankylosaurus

Dear friends,

a thing has happened.

A few days ago, I wrote about how one of my current challenges is having painful episodes that seemingly come out of nowhere that make me awfully sick, and that I was turned into a lab rat for several weeks only to come back with no answers. Two weeks ago, I had a very minor surgery called an Endoscopy. I don’t really consider it a surgery, but technically it is, so says the surgeon that performed it, and it is never a good idea to argue with the person who is dissecting you, so I will believe her. They really just loaded me with drugs, shoved a camera down my throat to take a peek around, and also did a biopsy where they took a few samples of my different parts for good luck. That all came back normal along with all the other tests.

However, the surgeon, before I was sedated and became silly, gave me a little interview, and after hearing about my current episodes and my past history with anaphylaxis, wanted to test me for something called a C1 Deficiency, which is apparently also called Hereditary Angioedema (Angioedema. Not ankylosaurus, but I have an affinity for dinosaurs, so I decided to dinosaur it. Sorry). I honestly don’t know a whole lot about it at the moment, since I only started researching this morning, but http://www.haea.org states:

Hereditary Angioedema (HAE) is a very rare and potentially life-threatening genetic condition that occurs in about 1 in 10,000 to 1 in 50,000 people. HAE symptoms include episodes of edema (swelling) in various body parts including the hands, feet, face and airway.

In addition, patients often have bouts of excruciating abdominal pain, nausea and vomiting that is caused by swelling in the intestinal wall. Airway swelling is particularly dangerous and can lead to death by asphyxiation.

Yeeah. So…that doesn’t sound very fun. The blood tests for this particular illness came back suggesting that I may in fact have it because the C1 results were all low. I have some of the symptoms, not all of them, but enough to make the doctors worry. This is not a true diagnosis quite yet. The next step is to see an allergist on Wednesday, and I am willing to bet I will probably have a few more tests in my near future. Until then, I am trying not to panic or freak out. If I was an amazing liar, I would say I am completely fine with this, have it under control, and will deal with things as they come. But I am a terrible liar with anxiety, so I will tell you the truth; I am nervous and I am worried and I am very, very scared.

Part of me feels as if this has both good sides and bad sides. But really, it has a lot of bad sides.The only good side is that I may no longer be in medical purgatory, floating about in empty space because no one can figure me out. This disease sounds pretty awful, but at least the mystery may have been solved, at least with this. It’s strange, because part of me hopes that I am diagnosed with it so that I know what I am dealing with and can get it under control, while the other part of me is terrified of this disease and how dreadful it sounds. I am equally terrified that they will say this isn’t what I have, like so many times before, and I’ll be thrown right back into purgatory indefinitely. This particular situation doesn’t really seem to have a winning side, does it?

Sometimes people don’t understand why I get upset when I have tests come back that are normal and am told there is nothing wrong with me. It’s really simple though; you cannot fix what you do not know. The longer I go undiagnosed, the longer I am suffering because no one, not myself or doctors, know how to help me. So I just sit and suffer while I keep being told I am “normal.” But as I said before, there is nothing normal about being this sick. I am always so very scared that I will get diagnosed with something that may either ruin my life or even kill me, while also being scared that I am going to spend the rest of my life as a miserable little mystery until my body finally has enough. Again…no winning side. I’m a little frustrated about it.

Well, for now I know that worrying will not help. My soul doesn’t know that, but my brain does and is currently trying to convince the rest of me. I don’t think it’s going all that well. Whatever happens though, I will fight. I have fought my entire life, and I am nowhere near done yet, so I will fight more. I want to have a healthy life, I want to have a fun life, and I want to become something more than a patient. The universe can always be assured that I can be a stubborn asshole sometimes, and I will be just as stubborn whether I am fighting disease or dinosaurs. I’m really hoping for more dinosaurs than disease. Maybe I can befriend one and ride him to work. I’d name him Michael Ceratops. Sigh…A girl can dream right?

Everything is a lesson
Lesson #1 through infinity
You will never have a greater opportunity to learn to love your enemy than when your enemy is your own red blood
Truce is a word made of velvet
Wear it everywhere you go.

Andrea Gibson- An Insider’s Guide on How to be Sick