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

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