Frantically throwing open and searching through my kitchen cabinets for allergy medicine - trying not to focus on the fact that I can no longer breathe through my nose. Throat turns to sandpaper while sinuses simultaneously burn as if I’m drowning.
Chest is getting tight. My head is starting to spin. Starting to wish that I did not live by myself.
Running to the bathroom to examine the damage done to my face. Eyelids nearly swollen shut. Cheeks are red and lips are starting to tingle. I’ve learned that if my lips start to swell, that tends to mean Hail Mary time.
It’s nearly midnight and I’m stumbling out my apartment door while calculating how long it will take to wait for one of the two working elevators in my forty-story apartment building, and to get 3 ½ blocks to Northwestern Hospitals Emergency Room.
Finally get outside. Can’t get a cab. Got to walk. I can't breathe. I can’t see.
I keep my sunglasses on as I rush to the ER feeling too embarrassed to have anyone see my now swollen, discolored and rapidly deformed face. The clusters of nighttime tourists that dot my neighborhood look at me in disdain as I walk past. Feeling my stress reach a tipping point, I realize that I can no longer juggle my physical pain while keeping at bay my anxiety and depression. Breathing now labored and from what I can only perceive as judgmental stares from strangers, I make it to the ER doors right as I start to feel faint.
I wish I was not by myself.
This is my third time in four months that I’ve gone into full-blown anaphylactic shock and not to brag, but I’ve gotten pretty good at quickly and calmly explaining myself to the ER’s front desk receptionist. Within five minutes I’m placed in a wheelchair and escorted to triage where my blood oxygen is checked, then wheeled into a private room. The fun is about to begin.
All at once, three nurses and one doctor come rushing in to greet me and before I can wrap my head around whose who, the nurses approach me and very quickly and calmly start to take off my clothes as if I'm a rag-doll in need of a new dress.
Head is getting fuzzier. Body is getting heavier.
By the time the nurses have ripped off my pants and start fumbling with my bra, I barely have the breath to request for a gown to cover myself with. I ask them to please tell me what they are doing. They ask me if my lips are tingling.
Within minutes I have eight hands simultaneously checking my back for rashes, sticking ports in my arm and checking my vitals. They ask me for consent in using a breathing tube (luckily, wasn't used), then in one quick action a nurse tells me to take a deep breath and an epi pen is jammed into my upper left thigh. In an instant, an IV of steroids and Benadryl begin to rush into my veins and I feel like Frankenstein reborn.
My heart starts pounding within my chest as if it’s trying to fight its way out. My whole body begins to shake as the adrenaline builds up in my muscles. Every move I make tugs and irritates the port in my arm. And all I can think about as I lay convulsing on the hospital bed is “where did they put my clothes?”
Swelling decreasing before being discharged
Within moments I have passed out from the Benadryl and for the next three hours I slip in and out of consciousness.
By the time I’m finally discharged it is nearly 3 am. My eyes are so wrapped from the swelling that my contact falls out. I truly now cannot see. A perfect parting gift to leave at the hospital.
Out of deep stubbornness, frustration and anger, I refuse to let a little thing like anaphylactic shock stop me from living. So in an inflamed drugged haze I shuffle back, alone, through the dark streets to my apartment while texting my boss that I will be late for work. When I wake up it feels like my body has been run over – my face as if it’s been beat.
With semi-refreshed eyes, I think I've pieced together what happened.
Dragging my body to the kitchen, past the half eaten dinner on the counter and clumsily opened cabinet doors, I start to rummage through the trashcan. As suspected, listed on the ingredient label to the pre-made pasta I had last night from Whole Foods, second line down reads – White Wine.
Now it all makes sense!
I’ve recently been diagnosed with three very rare allergies:
- Anti inflammatories
- Wine
- Food-dependent exercise-induced anaphylaxis (FDEIAn)
The third allergy essentially means that I go into near immediate anaphylaxis if I do any moderate moving after eating. And when combined with accidentally ingesting food that has been prepared with wine, each minute thereafter becomes excruciating.
Last night I ate a little pasta made with white wine sauce then exercised about two hours later. Within fifteen minutes of working out, I was suffocating. That’s all it took.
Since these allergies are all so new to me, I have found myself constantly second-guessing when I should use an epi pen. Constantly forgetting to check ingredient labels. Constantly forgetting to plan my meals around my activity level. I'm forced to dissect two of the simplest, most natural functions (eating & moving) in order to prevent a full body meltdown. My reality feels both distant and abstract.
My health comes at many costs
In a very similar setting, the first time I ever went into anaphylactic shock I was at home by myself and forced to walk to the ER. Later, when I received my Hospital invoice I was stunned to see that without insurance, I would have to pay more then $6,000 (minus ambulance costs) for life saving treatment (a few IV's and Benadryl). What more, the price of one epi pen has gone up to $500 in the U.S. since last year. Keep in mind that if you go into anaphalytic shock (with or without using an epi pen) you are still strongly advised to seek immediate medical attention. Throw in the costs of follow-up appointments with Allergists/specialists with additional testing and the cost of a random allergy starts going into the tens of thousands.
Who can afford the price of living if it means each additional breath will put you in debt?
Trying to ignore how these new allergies reek havoc on both my pocketbook and pre-existing medical conditions, I can only hope that my next attack can be handled in a swift manner; that with blood testing, I can come to some sort of conclusion on why my body is so bent on self-destruction. Until then, I can only cover up my invisible physical pain and fatigue with a smile and strained eyes - can only pray for strength to get through each setback - can only hope for understanding from family and friends.
And so, coming with the territory of any new diagnosis - options are limited and the next choice is mine to make.
Cover Photo by Axel Void