It's been a while, but my mind stil wanders when I hear the word "hives."
I still shiver when I think about how those few months in 2016 made me feel. I went from taking a multivitamin once a day because I liked those flavored vitamins to downing a drawer full of allergy medications day and night. I went from dancing at a concert to struggling to walk downstairs. I went from paying attention in literature class to crying in the bathroom stall while I took too many Benadryl.
I woke up one day and started having invasive, intense, and incessantly itchy, red hives all over my skin. Then my face and body swelled up to the point where I couldn't recognize myself. It continued for months. I visited doctors, allergists, specialists, and they all told me they didn't know why my body was backfiring. They just told me to smile when I wanted to cry.
And I still haven't found out why, but my hands still haven't felt the same. The swelling made my joints swell up and they haven't been the same since. I can't make a perfect fist.
But let me try to look at this like an optimist. Please don't get me wrong. It wasn't that bad. I came out unscathed.
I wrote the following essay, "My Body Knows Something I Don't," in October of 2017. At that point, it had been just over a year since my body backfired. It's nearing the end of 2021 today, and all's been well since. I wanted to edit this essay for clarity and to clean it up a bit (I can be an overwriter). So, here I go:
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 it.
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 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 thing was bothering it, but I couldn't seem to reach whatever it was. So I tried to just ignore it and enjoy the concert.
My friend and I went to IHOP after the show. My eye still felt funny. After ordering pancakes, I looked at my reflection in the mirror of the women's restroom 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.
I asked my friend what she thought, and 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 back to normal by the afternoon. So I thought nothing more of it.
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 just having an allergic reaction to my makeup or my friend's pets. But that didn't make sense because I hadn't bought new 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 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 them through my clothes. I remember I would come home from a full day of college lectures and take off my clothes and look into a mirror at my reflection and stare in disbelief. What was happening to me?
Unfortunately, and despite my hopes, the situation did not resolve itself. It got worse. At the end 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 I woke and stared in the mirror at a face that wasn't mine.
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 was 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.
The allergist then 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 used to treat allergies. He also instructed me to take three more over-the-counter medications: Zyrtec, a popular antihistamine drug used to treat allergies; Zantac, a stomach acid medication known to possibly assist in the treatment of urticaria; and Benadryl, another allergy medication. In total, I was instructed to take five medications.
But even with all these pills, the allergist told me, 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 EpiPen, or an epinephrine autoinjector. The EpiPen is an extremely expensive medical device used to treat extremely severe allergic reactions. Basically, it's a shot that's injected into a patient's muscle (usually the quads) 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, on the third day, 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 myself start to crumble. My legs moved me up off the bed and walked me towards the wall. I fell into a glasstop accet table 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 glass broke 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 floating away again and falling over onto my floor.
In that moment, the extremely expensive EpiPen went to good use. My mom dug the device out of my bag, 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 hives disappear, and they would bring me back into full consciousness, back into the world. Maybe they would 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 awful. Yeah, 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 – only 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 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 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 was starting 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 and swollen skin became part of me. 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 in my bag, 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. I wasn't trying to fall asleep in class, I just wanted the night to pass. Afterwards, I walked back to my seat 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 at least 150 mg of Benadryl. The standard dose, and what I received in the ER, is only 25 mg. I figured maybe it would at least knock me out so I wouldn't have to face this. I didn't want to feel. Thankfully, I didn't fall asleep at the wheel.
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 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.
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.
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.