When it all started, I thought I had bed bugs. I woke up one day to find tiny, itchy red dots all over my arms and legs. A Google search informed me that I probably had bed bugs. So, I washed my bed sheets and then the dots must have gone away, I think, because I thought nothing more of the situation.
A few weeks later, on a Saturday in March 2016, I went to a concert at the United Center in Chicago with my best friend. It's still one of the best concerts I've ever attended. I was having a lot of fun until I felt like there was something in my right eye. It felt a bit weighed down and itchy and so I dug my hand into the corner of my eye, trying to dig out whatever dirt or particle was bothering it, but I couldn't seem to reach whatever it was. So I tried to just ignore it and enjoy the concert.
We, my friend and I, went to IHOP after the concert. My eye still felt funny. After ordering pancakes, I looked at my reflection in the mirror of the women's restroom at IHOP and saw that my right eye was... swollen? It did not look like my normal eye, that's for sure. My top eyelid was puffy and the corner was inflamed and I couldn't open my eye up completely. It didn't hurt or anything, but it just looked really freaky. My left eye, however, looked as it always did.
When I returned from the restroom, I showed my eye to my friend. She assumed I just got some makeup in it, and said to make sure that I wash my face really well when I got home that night. So I did.
And I woke up the next day, on a Sunday, and my eye still wasn't completely back to normal. It was still visibly swollen, but then it faded down by the afternoon. So I thought nothing more of the situation.
Then a couple of weeks later, on another Saturday, the same thing happened again. I was hanging out with my same friend when my eye swelled up out of nowhere, except this time it was my left eye instead of my right. And, once again, the swelling didn't fade away until Sunday afternoon.
By then, I convinced myself that I was simply having an allergic reaction to my makeup or my friend's pets. But that didn't make sense because I hadn't switched makeup products recently, and I'd been hanging around my friend and her pets for years. Maybe it was a new brand of perfume I had recently bought?
So I stopped using that perfume. But that didn't work. Every couple of weeks, one of my eyes would keep swelling up.
Then I remembered the "bed bugs."
The bed bugs didn't come back, not exactly, but something else started happening. Red spots started showing up on my skin, on my arms, legs, shoulders, back, neck – all over my body. Sometimes they'd just appear haphazardly, singularly, on an arm or a leg, and sometimes they'd appear to form in groups, colonizing an entire area of my body. Sometimes they'd be small, about the size of a dime, and sometimes they'd be overwhelming, overtaking the entire width of my forearm or thigh. Sometimes the spots would be raised, and sometimes they'd be flat. Usually, they'd itch, a lot.
For a while, I kept what was happening a "secret" because I didn't want to go to a doctor's office, and I hoped that it –whatever it was – would just resolve itself on its own. So, to keep quiet about it, I wore long sleeves and pants every day. Even through my clothes, though, my skin would be itchy and irritated. Sometimes, depending on how raised the spots were, I could feel each individual spot through my clothes. I remember I would come home from a full day of classes (I was still working on my bachelor's degree at the time) and take off my clothes and look into a mirror at my reflection and stare in disbelief. What was happening to my body, and why?
Unfortunately, and despite my hopes, the situation did not resolve itself. It got worse. At the ending of winter, I thought that I could no longer handle the situation by myself, so I finally saw a doctor. The doctor, a middle-aged woman who I had never met before, asked me if I was allergic to anything. I replied, "No. Nothing that I know of." She then proceeded to ask me if I've been doing or encountering anything new in the past couple of months. Again, "No," I replied.
After she ran out of questions, the appointment ended with her prescribing me prednisone, a corticosteroid that is used to treat diseases related to inflammation, such as asthma, gout, and arthritis. When taken on a regular basis, prednisone can cause some pretty serious side effects, so I was only instructed to take the drug for about a week. During that week, my symptoms subsided, but then simply returned once I ran out of meds. Prednisone was a short-lived solution.
She told me I had idiopathic urticaria. Urticaria, another term for hives, refers to the red spots that had been appearing all over my body. People with urticaria may also experience angioedema, or swelling of the face and joints, which accounts for the swelling of my eyes. Idiopathic means that the cause is unknown.
Since I still didn't know what was causing the urticaria, I had no way to prevent it. And it kept getting worse. By the beginning of summer, hives became a normal occurrence in my life. I had them almost daily, so I lived in a constant state of itchiness and comfortlessness. And swelling became more frequent, too, and more pronounced. Instead of just my eyes swelling, my mouth, cheeks, hands, fingers, ankles, and even my joints would swell, seemingly out of nowhere. There were so many mornings of waking up and feeling like my face was unlike the one I was used to. There were mornings when I couldn't open my eyes completely, and mornings when my lips jutted out past my face and became three times their normal size. If facial swelling gets serious enough, a person's tongue and throat can also swell up, causing a literal inability to breathe, which can then result in death.
I had to do something – I couldn't just live like that forever. So I saw a second doctor, an allergist. At the first appointment I had with this new doctor, I was first required to talk with the clinic's nurse about my situation. When I showed up to that appointment, I had hives all over my body, and my face, fingers, ankles, and joints were swollen. My hands were so swollen that I couldn't make a fist. My joints were so swollen that I couldn't even walk without experiencing constant pain, forcing me to shuffle around at a snail's pace.
The nurse took my vitals and then asked me to describe my symptoms and concerns to her. Like the doctor I had previously seen, this nurse again asked me if I was allergic to anything. I had nothing substantial to reply. I felt miserable, looked horrible, and didn't know what was going on with my body.
Before dismissing me from her office, the nurse told me that I should smile more.
Fortunately, the allergist was more helpful and more understanding than the nurse he employed. He asked me for a detailed medical history, a thorough explanation of my symptoms, and a description of my environment and any possible changes within my environment that could have caused the urticaria. Despite his exhaustive overview of my history, current symptoms, and environmental state, he still could not give me an answer to the question of what was happening to my body, and why.
He did, however, give me a small glimmer of hope through some proposed treatment options. He prescribed me two medications. The first was Silenor, an antidepressant drug that is most regularly used to treat symptoms of anxiety and insomnia. In some cases (such as my own), the drug can also be used to relieve pain and itch associated with skin diseases. The second prescription was Singulair, an anti-inflammatory drug commonly used to treat allergies. He also instructed me to take three more over-the-counter medications. The first, Zyrtec, was a popular antihistamine drug that is, again, used to treat allergies. I was also told to take Zantac, a stomach acid medication that is known to possibly assist in the treatment of urticaria. Finally, I was supposed to take Benadryl, another allergy medication, whenever my symptoms became overwhelming. In total, I was instructed to take five medications.
But even with all these medications, the allergist explained, there's a chance that I could still develop severe, possibly life-threatening swelling. Since we didn't know what I was allergic to, there was no way to avoid it. And since I couldn't avoid it, there's a chance – albeit a small one – that it could kill me if it tried hard enough.
Due to the severity and unpredictability of my symptoms, the allergist also prescribed me an epinephrine autoinjector or, as it is most commonly known, an EpiPen. The EpiPen is an extremely expensive medical device used to treat extremely severe allergic reactions. Basically, it's a shot that must be injected into a patient's muscle when they're experiencing anaphylaxis, a fancy name for an allergic reaction that is potentially fatal.
Before this all started, the only pill I took daily was a multivitamin. I felt like a walking pharmacy, except I couldn't know for sure that all the pills I ingested even helped at all, even mattered.
Even with all those pills, I still woke up with a swollen, red, hive-filled body. I still lived uncomfortable within myself, unable to find a reason, or find an explanation, or find an answer.
I wanted to give up and just accept my fate. From then on, that was how I was going to live.
The allergist had a different outlook. He wanted to perform a skin testing procedure on me to see if I was, in fact, allergic to any foods or anything else within my environment. There are several ways to perform this test, but in order for the results to be accurate, patients need to stay off all allergy medications for an extended period of time – I couldn't take those five medications for three days.
Those were an interesting three days.
On the second night, I couldn't sleep. My face was swollen. There were hives covering my entire body. I was an itchy mess. And, even worse, I started developing night sweats. I would sweat so much that I would wake up in the middle of the night, lying in my own sweat that had soaked into my sheets.
The next morning, I had woken up at 8 a.m., sweaty and itchy. I walked out of bed, took a drink of water, and then fell back to sleep. I soon woke up again, an hour later. This time, my entire face and hands were unrecognizably swollen. I sat up in bed. Unable to muster the motivation to move, I sat there for about a half an hour. Eventually, I got up out of bed and walked a few feet across my room. Then I felt the world begin to slip.
My skin was sweating. My heart was racing. My vision was blurring. I started seeing dark spots, and then those spots became my vision. Everything went black. I sat back down in bed, but I could feel my consciousness start to crumble. My legs moved me up off the bed and walked me towards the wall. I fell into a glass desk and it collapsed onto the floor, taking me with it. Obviously, I must've passed out. Then I must've woken myself up after the desk crashed and glass shattered everywhere.
My parents heard the dilemma, thankfully, and ran upstairs to see what was going on. I opened my bedroom door, barely coherent, and said, "I think I need to go to the hospital," before losing consciousness again and falling over onto my floor.
In that moment, the extremely expensive EpiPen went to good use. Unsure of what else to do, my mom dug the device out of my purse, only to realize that she didn't know how to use it. Through my haze, I told her how and where to inject it. So she did, and then my parents walked me downstairs and into the bathroom so I could change out of my sweaty clothes. The EpiPen prevented me from totally losing consciousness, but I still did not have control over my body.
My mom drove me to the hospital. On that random day in August, I was checked into the emergency room for the first time in my life.
I hoped the emergency room would save me. They would make the swelling and the hives disappear, and they would bring me back into full consciousness, back into the world. Maybe they would even figure out what was causing this, and maybe they would give me answers to all the questions I'd had for months. I wanted so badly for them to save me.
They didn't. They asked me the same rounds of questions I'd been asked by other nurses and doctors for months already, and I gave them the same answers: Um, I'm doing okay, I guess. No, I don't think I'm allergic to anything. No, I don't know why this is happening. Yes, this is really weird. Yes, this is an awful experience. Thanks, I hope I get better, too.
They had no wisdom to impart or answers to give. They administered me a standard dosage of Benadryl through an IV – after a solid hour of two nurses, one on each side of me, trying to find a vein through my swollen skin, muttering to themselves about how difficult this was, jabbing needles into my body over and over again. Then, the ER doctor told me that I shouldn't have stopped taking my allergy medication. I told him I had stopped because I was supposed to have a skin test performed within the next day or two. The doctor had nothing intelligible to say in reply.
I stayed in the emergency room bed for hours, listening to the beeping and the screaming and the bodies rushing in and out of the area. My mom sat in the chair next to my bed, staring at me while I stared off into space.
The Benadryl helped to decrease the swelling in my face, and also alleviated the dizziness, but the hives never completely subsided.
Since I appeared to look better, they sent me home that afternoon.
I still wasn't really "better," though. I saw the allergist a couple of days later and, because I had to begin taking Benadryl again to prevent another fainting attack, they couldn't accurately perform the skin testing. I still didn't know what was wrong with my body.
It kept happening. It never stopped. Hives were an almost daily occurrence, as was bodily swelling, while facial swelling happened almost weekly. No one could figure out what was wrong with my body. No medication could successfully combat my symptoms. But my life kept unfolding in front of me, and I sat back and watched it, itchy and red and swollen and miserable.
About a month later, in September, I was sitting in class. I was only a couple of weeks into the first semester of my senior year of college. I was having an okay day, an okay time listening to my teacher drone on about the course requirements and the upcoming assignment. Then I felt my eye begin to swell. I escaped into the restroom to look at myself in the mirror. I thought I looked insane. I thought I looked like I had some sort of disease. I didn't want anyone to look at me. I considered just staying in the restroom, just not going back to class. But I couldn't. I had to go to class. So I took out the bottle of Benadryl that I kept with me in my purse at all times, and then I took a couple pills, and then a couple more. And then some more. Then I waked to the vending machine and bought a bottle of Pepsi and drank some – for the first time in five years – because I figured that the sugar and caffeine would keep me awake, offsetting the Benadryl's sedating effects. Afterwards, I walked back to class and sat there for the remainder of the lecture with my hands covering my face and my gaze lowered down towards my desk.
In that restroom stall, I took 150 mg of Benadryl. The standard dosage, such as the dosage I received in the ER, is only 25 mg. I don't know how I drove home that night.
The next day, I had a different class to attend. The same thing happened – I was sitting in class when my eye began to swell. This time around, I couldn't handle it. I didn't want to sit in class for hours feeling self-conscious and miserable, staring at my desk. So I asked to speak to my teacher, who I never met before that semester, and walked out into the hallway with her and explained what was happening to me.
"So I think I'm just gonna go home," I said, feeling defeated.
"That's alright, don't worry about it," she replied. "Are you going to be okay driving home?"
My eye was so swollen that I could barely keep it open.
"Yeah, I think I'll be okay."
She told me to be careful driving home and that she hoped I could figure out what was wrong with me. I thanked her and then I left.
I woke up the next day to a few missed phone calls and text messages from my best friend, the same one I went with to the concert seven months earlier.
"Come outside," a text message read.
I got out of bed and looked at myself in the mirror. My face didn't look like my face. Both of my eyes were swollen, as were my cheeks. And my body didn't feel like my body. My joints were swollen and painful, and my skin was itchy and red. I was defeated.
I walked outside to find my friend's car parked in the driveway. Seeing me walking towards the car, my friend got out from the driver's seat and hugged me.
"I got you something," she said. She handed me a Pumpkin Spice Latte, a drink which she knew I adored.
"Thanks," I said as I sipped the latte.
Maybe it was the latte that saved me. Or maybe it was my friend's emotional support, or my teacher's sympathy. Maybe it was just all the pills. Or maybe it was none of the above... I honestly don't know.
Whatever it was, that day in September was the last day my face swelled. My hives and bodily swelling went away, too. And as of today, they have still never come back.
I have even managed to wean myself off all the medications. And I no longer have a bottle of Benadryl in my purse at all times, and I no longer need to carry an EpiPen. My body is back to normal.
But I still don't know what happened, or why. Why did my eye begin swelling at that concert, of all places? And why did it stop on a random day in September after drinking a Pumpkin Spice Latte, of all things?
My body is back to normal, but the memories of those seven months still live in the back of my mind. I'll never forget how it made me look, or how it made me feel. And since I'll never know why it happened, I can never really prevent it from happening again. It could still happen again. It could start again, anytime, just as suddenly as it ended. That's what really scares me.
I know there are worse things in the world. I know what I went through is not as horrible as cancer, nor as devastating as a mental illness, nor as permanent as an unexpected death. It could have been worse – believe me, I know.
But what makes it so upsetting, I think, is that I will never know its cause. I will never know how to prevent it. I will never know anything other than what my body told me. There are no answers, only questions.
The year 2016 taught me that I live in a constant state of uncertainty.