I’ve survived Long COVID and been able to recover about 80% of my health. My journey wasn’t easy but it taught me a new way to live, and for that I am grateful.

For many years I wondered if I would ever get to this point where I can honestly access gratitude. I was so sick, so hopeless, so angry, so tired, so resentful, so isolated, so frustrated that I often thought I was doomed to live that way forever. It’s hard to access acceptance, let alone gratitude, when your body can’t do any of the normal functions it used to be able to — breathe, digest food, regulate your heart rate and temperature, think, form sentences, sleep… the basics. Long COVID took it all away from me, little by little, and I didn’t recognize the signs until it was too late. It’s why I’m sharing my story in painstaking detail, in the hopes that you or someone you know may find something helpful here to reduce or avoid suffering.

Writing about all this has not been easy. It takes an enormous amount of emotional energy to relive these traumatic experiences and process the inevitable grief that comes up, and that’s on top of all the collective grief we are living through in this moment in time. These heavy emotions take a physical toll on my disabled body, so I cannot rush this process. I thank you for your patience and continued support of this work. You, my blog subscribers, are helping keep me housed and fed now that I can no longer work full time, and I appreciate you more than you know. I’d also appreciate if you can share my story with your circles, to reach other folks who might benefit from this work.

I wrote this piece as a timeline to highlight some key points in my Long COVID journey that felt significant. Edits might happen over time as more memories come back (I lost a lot of memories during this process but sometimes I get flashbacks after hyper-focusing on a subject thanks to my AuDHD brain).

I ask that you please bear witness without judging me or taking anything I say here personally — this is my story, and it has nothing to do with you. As we say in Al-Anon, simply take what you like and leave the rest.

CONTENT WARNING: mentions of self-harm and suicide

February 2020

I woke up feeling feverish, slightly nauseous and extremely tired. My entire body ached an uncomfortable ache, from my skin down to my muscles and bones. I tried getting out of bed a few times to feed myself and hydrate, only to promptly resume a horizontal position. The little bit of food and liquid I was able to force down (I had zero appetite) made my insides hurt and would eventually come right out. After several trips to the bathroom, I assumed that what I had was some sort of food poisoning and followed the protocol that my cousin, a professional nutritionist, suggested — activated charcoal caps to trap the toxins, lots of coconut water to flush them out and stay hydrated, and lots of rest to allow my body to heal.

During the night, however, it became very clear that this was not just food poisoning as the feverish feeling intensified and my mind was racing with thoughts, teetering between awake and dream states. I felt very "out of it" and was simultaneously restless and fatigued. By the time morning came, I was relieved that I made it through the night to be honest. I hadn’t been that sick since the first time I caught the North American version of the flu back in 1995. Something told me this was not a normal “stomach bug” either, but that hunch wouldn’t be confirmed until much, much later.

For several days I felt absolutely miserable, and not just physically. It was also mentally and emotionally exhausting too. This was happening during a 10-day trip to visit my family and celebrate Carnaval back home in Brazil. To say our plans got sidetracked would be an understatement. This was also my first time bringing my partner L. home to meet everyone. Let’s just say that getting as sick as I did take things up a notch. He and my mother took turns taking care of me and navigated hilarious moments of literally not speaking the same language. L. practicing the foundational Portuguese he had been learning on Duolingo for the prior six months (and filling in the gaps with English and Spanish), and my mom trying to patiently teach him Portuguese and anxiously use Google Translate to understand his English. Add a medical emergency to that context and you get the picture.

Eventually I started to improve and before long it was time to hop on a few planes back to New York*. The trip was awful, as I still felt pretty weak and rundown, and my partner started showing similar symptoms. By the time we landed, we were both in pretty rough condition. We went home and rested for the next few days to recover.

Exactly 10 days after we returned, on March 12, 2020, New York City shut down as then mayor Bill de Blasio announced a state of emergency due to COVID. I was sent home from school and told to empty my locker because they didn’t know when the school would reopen. I loaded my backpack and lugged the rest of my fashion design school supplies back to my apartment in Brooklyn, where I lived with my dachshund Ollie.

The next few days were an eerie blur. Everything stopped. Brooklyn got quiet. No one in the streets. No cars. Nothing. The usual rush of the city fell to a deafening silence. We all stayed inside, glued to our screens following any updates about the situation. As the number of deaths grew, so did the frequency of sirens breaking the silence outside. Then the deaths came closer to home, claiming Cuyler, our building superintendent, along with his wife and their nephew who was in his late 30s. It was all very scary… I was in the COVID epicenter of North America, watching freezer trucks around Central Park fill up with bodies because all the city morgues were over capacity, struggling to get some food items because stores ran out of whatever they had, not knowing what challenges the next day would bring. That kind of collective trauma takes root in your body.

Soon, the days turned into weeks that turned into months that never ended. Our collective concept of time evaporated, even as we were pushed to transition work and school to online platforms and pretend it was all business as usual. I was depressed and exhausted but so was everyone around me judging by the look on their faces and their body language. I had terrible insomnia most nights, but so did everyone I talked to during those days. It was hard to discern what was my body’s sickness versus what was a collective sickness.

I kept pushing through and kept ignoring those early warning signs. I was a full-time student at FIT working towards my BFA in Fashion Design (a life-long dream) and doing some freelance work. I was also caring for myself and Ollie, who was a senior dog going through his own health struggles. It was a lot, and so my body continued to break down little by little. My sleep kept deteriorating, causing my digestion and mood to also further deteriorate. I felt miserable most of the time but I kept going because I didn’t know what else to do. We were housebound in lockdown, and between online classes I would just crash in bed, not able to function much.

April 2021

Once vaccines became available in the spring of 2021, I got my two shots of the Pfizer version spaced out as instructed, and both times the side effects made me feel exactly like I did back in Brazil: bone-deep body aches, intense fatigue, nausea, dizziness, etc. lasting for about 2-3 days. When I mentioned that to my primary care doctor, she said I likely had COVID in Brazil, and somehow survived it. The vaccines made my body remember the threat it once fought and behave the same way it did then. I had so many mixed feelings about what all that meant. Relief. Panic. Like, WTF? What had this thing done to my system? I needed to know.

My doctor ran a bunch of tests to check my heart, lungs and brain. When everything came back “normal” and she said I had nothing to worry about, I sort of believed her, even though deep inside I didn’t feel like the same person. Something had definitely shifted in my quality of life. I was constantly fatigued and brain-fogged. I was tired but wired, unable to get restful sleep. I was in my head a lot, having a hard time being present in my body.

December 2021

I had a third Pfizer vaccine, my first “booster”, and my health started to deteriorate noticeably faster from this point on. I spent several days in bed after receiving the shot, completely fatigued and unable to care for either myself or Ollie. My partner stepped in to help us.

A few weeks later, a constant ringing in my ears would come in and out of nowhere, sometimes lasting a few minutes, other times lasting hours on end. I went to see my primary care doctor again but kept getting dismissed as all my bloodwork and diagnostic tests kept coming back “normal”. And so I kept going, feeling miserable but not knowing what else to do, just pushing through the brain fog and fatigue to function.

At the same time that all this was happening to my body, Ollie’s health was also deteriorating. My partner drove for over two hours to take us to see a holistic vet in Connecticut, our last hope after having tried several vets in the city and different combos of special food and meds. Ollie had lost a lot of weight and was barely able to keep any food down. He was also restless and couldn’t sleep for more than a few minutes at a time, a clear sign of his discomfort. That vet visit lasted about two hours, as she went through his entire health history and test results, and asked several questions to get a complete picture. By the end, she diagnosed him with Cushing’s Disease (pituitary-dependent hyperadrenocorticism), said the prognosis was about two years of life expectancy from the onset of symptoms, and prescribed a homeopathic treatment to give him better quality of life. I was equally grateful to have an answer and devastated by what it meant.

February 2022

School returned to classes in person, so I had go into Manhattan twice a week. Between those classes, I spent most of my time at home struggling to function. The weekly commute was really rough on my body — an hour each way, mostly inside crowded New York City subway trains that zapped my energy.

On average, I was having one or two good days a week where I’d have a bit more energy to take care of myself, do homework, have Zoom visits with friends... but would crash afterwards and be bed- or couch-bound for three, four days straight. I had already dropped off some courses and switched to part-time status at school. I also had to stop working. I simply didn’t have enough energy to maintain my old life. On top of it, Ollie’s treatment required me to make all his food from scratch, so twice a week I’d save my energy to spend several hours in the kitchen slowly making a large-enough batch to feed him for several days. It was a labor of love, and as mothers anywhere can relate, I somehow found strength I didn’t have in order to do that for my baby. As exhausted as I’d be afterwards, it made me feel good to see how well he was responding to the treatment. He was happy again, gained weight, and slept better. He was also taking care of me, lying beside me in bed for hours on end (nurse Ollie was the best), until my partner stopped by to take him out for walks since I couldn’t do that anymore.

May 2022

I suffered a personal loss that shocked my nervous system to the core, exacerbating the complex PTSD from the pandemic, and further deteriorating my physical health. My beloved Laura took her own life, almost four years to the day her son Gui had taken his own life, in the same manner, in the same spot. Laura was my mom’s best friend since high school — she was like a mother to me, and Gui was my little brother from another mother. That compounding grief was almost too much for my body to handle. I will tell their story at another time, in another post, but for now I’ll focus on the impact that Laura’s death had on my health. I was in shock and devastated. It was hard to make sense of anything. It was hard to eat. It was hard to sleep. It was hard to function. Everything was a blur.

Somehow I managed to keep going, putting one foot in front of the other, just focusing on the next right action. I allowed myself to cry when I needed to cry, whether I was at home by myself or in a crowded subway. I knew suppressing my feelings would only make me sicker than I already was. And honestly I didn’t have enough energy to resist the tsunami of emotions that coursed through my body. I had learned from experience that the only way out of grief is through it, riding the waves as they come, surrendering until they pass.

As the summer months came and went, the pain became a little more manageable, my appetite returned, and my sleep improved slightly. I watched more and more people around me “return to normal” and stop masking entirely, but my partner and I chose to keep up with our COVID precautions after reviewing the data because it didn’t feel right to simply abandon immunocompromised and vulnerable people to fend for themselves.

September 2022

When the time came to return to school, masks were still required even though now people were wearing mostly cloth and surgical masks (and often as chin diapers) since "world leaders" were signaling that COVID was no longer as dangerous as it had been thus far. So it’s no wonder that after just three days back in school I woke up with 100.3 F fever and post-nasal drip. I took a COVID test and it quickly turned positive.

This second infection felt very different though. My breathing was labored, my chest was heavy, as if someone was sitting on it. I lost all sense of taste and smell, and I felt extremely depressed. I went to urgent care where a doctor (not wearing a mask) ran a PCR test to confirm my diagnosis, then asked me if I wanted steroids, Paxlovid, or both. I had a fever and could barely think straight so I asked for his recommendation.

With a Paxlovid prescription in hand, I went to three different pharmacies near me in Brooklyn but none of them had it. I went home and continued to rest and care for myself, as my partner took on the mission of finding Paxlovid. I also started writing down my symptoms in case I needed to return to the doctor because it was hard to think and remember things. My brain was extra foggy.

A couple of days later, I had three sudden episodes, back-to-back, of accelerated heart rate, dizziness, tunnel vision, numbness in my fingers and toes, and difficulty drawing a breath. I thought I was having a heart attack so I called 911. When the paramedics came into my living room, none of them were wearing masks despite me warning them that I had an active COVID infection. They laughed it off saying they were vaccinated as they took my vitals and ran an EKG. All results came back “normal” so they offered to take me to the hospital while warning me that the hospital would probably just send me back home.

They were all behaving like a bunch of frat boys and made me feel really unsafe in my own home. They dismissed my concerns entirely and showed no empathy or compassion whatsoever. I remember thinking that I’d rather die at home alone than at a hospital surrounded by people like these, so I thanked them for their services and let them go. A few minutes after they left, I had another heart episode while lying down on the couch resting. It was scary. I just cried and prayed, hugging my sweet Ollie for comfort.

Later that day, my partner was finally able to secure a box of Paxlovid in Manhattan and I started taking it as prescribed. I had high hopes for it, since Paxlovid was being heavily marketed as THE treatment of choice for COVID infections. But my experience was absolutely awful. Paxlovid wrecked my gut and produced the most disgusting metallic taste in my mouth. As one Internet user accurately described it, everything tasted like garbage, like the liquid that pools at the bottom of a trash bag to be specific (yeah, gross).

A week after finishing the Paxlovid treatment, I was woken up from a deep sleep with my heart beating so fast that I couldn’t breathe. It was about 2am and my life flashed before my eyes as I somehow managed to crawl to my first-aid kit, chew an aspirin, dial 911, and hug Ollie on the floor certain that this was it, I was dying. What I’m summarizing here were the most terrifying moments of my life, where seconds felt like hours, every shallow breath pulling me away from my body to an in-between space where time didn’t exist. This was my first near-death experience and there are no words to accurately describe what that feels like.

Luckily for me, there was an ambulance parked in front of my building that night, so the paramedics arrived within minutes. As my breathing started to slowly return to normal, the EKG still registered my heart rate at 155 BPM. I was taken to the emergency room and hooked up to a monitor, where I spent all day having subsequent episodes of random heart rate fluctuations. I was eventually given a diagnosis of Supraventricular Tachycardia (SVT) by cardiologist #1, prescribed Metoprolol, and sent home.

A day later, the Metoprolol interacted with my asthma medication (which was mentioned in my medical intake form, mind you). Two days later, after having three back-to-back heart episodes and almost fainting in her waiting room, my primary care doctor took me off Metoprolol and sent me to cardiologist #2, her husband. A few days later, that new cardiologist said the structure and blood flow of my heart seemed normal and referred me to an electrocardiologist.

October 2022

Since modern medicine hadn’t offered me anything concrete yet, I started remote Reiki treatments with an experienced practitioner in Brazil that had helped other family members with complex health issues. I figured it couldn’t hurt to try, and I was desperate for any relief at all. The 30-minute sessions involved me lying in bed to rest while focusing on my breath, like a horizontal meditation. I often fell asleep by the end of a session, which is considered a good sign in Reiki, and felt a deep sense of calm when I woke up. The sessions were helping so much that I decided to get trained in Reiki to take better care of myself and eventually help others access its benefits too. I was woken up most nights with crazy heartbeat fluctuations and giving myself Reiki helped me get through those scary moments. With both hands on my chest, I would feel the energy of my heart circle around inside me, first speeding up then dissipating throughout my entire body, spreading a sense of calm as my heart returned to its natural rhythm.

After weeks of waiting, I was finally seen by cardiologist #3 (electrocardiologist) who went over my test results, ran several additional tests, then changed my diagnosis to Sinus Node Dysfunction / Autonomic Nervous System Reflex Dysfunction, a.k.a. Dysautonomia. He said that “it would likely go away on its own" and referred me to a pulmonologist to adjust my asthma treatment. He then put his hand on my thigh and made me feel extremely uncomfortable and unsafe — I froze and got out of there as soon as I could. Another #metoo moment I’d like to forget.

November 2022

I went to see pulmonologist #1 and was delighted that he was wearing an N95 mask and eye protection. That made me trust him because it was obvious that he was still following the science when most doctors had dropped out after the summer’s “return to normal” bullshit. He asked me a lot of general questions about my health, well beyond just my asthma, and listened to my answers patiently — even as I struggled to find the words and be coherent. I told him about my poor quality of life, the heart episodes, the fatigue, the lack of sleep, the damn brain fog. I told him I was a writer and spoke three languages but now could barely finish a sentence in any one of those languages, tears streaming down my face. I told him I was afraid to lose my mind and memories and ability to talk and function.

He sat there, listening and taking everything in, then handed me a box of tissues and said that everything I was saying made sense and was likely connected. He said “I’m sorry but you might have Long COVID. I’m treating ten doctors here, all colleagues of mine, all females around perimenopause age, with the same exact symptoms you just described.” I melted back in my chair, jaw dropped, in shock, relief, fear, and 55 thousand other feelings.

Back home later that night, I had a difficult conversation with my partner and told him what the doctor said. Part of me was still in denial that I had just been handed a life sentence, and part of me was ready to face the music and fight. I called a dear friend who reminded me to allow myself to have a pity party but to not linger there past its point of usefulness. The next morning I called the NYU Post-Covid Care Program, their Long COVID clinic, to put my name on the waitlist. There were no open appointments until February 2023.

December 2022

Ollie’s condition had worsened alongside mine, and I had been struggling with the unbearably difficult decision of letting him go. I wanted to spare him any additional suffering and I simply was too sick to continue caring for both of us. During a Reiki session, he communicated to me that he was ready to go and was just waiting for me to be ready. I panicked and started crying and begging him to hold on because I wasn’t ready yet. The nonverbal communication freaked me out at first, but the next morning my Reiki practitioner in Brazil texted me to tell me she felt the same exact thing, and that was the confirmation I needed. Bawling my eyes out, I called the vet to make the appointment for his transition two days later.

Ollie was mine for 14 years and it was a privilege witnessing his entire lifespan from 4-month-old puppy to grumpy old man. We spent his last 48 hours on this Earth very present with each other, cuddling in silence in our living room, communicating soul to soul. He transitioned in my arms, swiftly, and I spent the next following weeks in bed, tending to my grief and dilapidated body.

January 2023

I got a call from NYU Post-Covid Care Program saying they had a cancellation and could fit me in sooner than expected. On the day of my appointment, pulmonologist #2 was wearing a KN95 mask and took the time to listen to my whole health saga. We spent an hour talking, with him asking several questions and reviewing all the tests I had done so far. By the end, he gave me an official Long COVID diagnosis and, although that finally gave me some answers and a sense of direction, it was just the beginning.
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*I still can’t believe I did that and that it was ever considered normal. PSA: if you’re sick, don’t get on a plane or, if you absolutely must, then at least wear a good-quality mask such as N95, KN95, KF94 or better to avoid getting others sick. Please and thank you.

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