Updated: Oct 25, 2020
IS NOW A COVID-19 LONG-HAULER...7 MONTHS OF BEING SICK!! ....."NO-ONE IS EXEMPT FROM CONTRACTING THIS VIRUS...DON'T LET YOUR GUARD DOWN".
Amy Siniscalchi, age 45, Chief Program Officer for non-profit, Cortlandt Manor, NY
AMY'S COVID-19 STORY: (Story was written by Amy and shared by Carolyn Andrews: Truestoriesofcovid19.com)
I am a Chief Program Officer at a non-profit, serving victims of domestic violence and human trafficking. My COVID-19 story started on the evening of Wednesday, March 25th, I stopped working a little early and took a shower. I noticed in the shower that my chest felt tight and that I was short of breath. I chalked it up to exhaustion.
Due to the Coronavirus just beginning to hit the United States and New York hard, at this time, I and my colleagues were working 10 days straight, 12-14 hours/day, making sure our non-profit organization transitioned our employees to work from home and continued to provide crisis services to victims of domestic violence and human trafficking. Many of those victims that we worked with, were now trapped inside their homes with their abusers or traffickers during the shutdown.
We were also one of the first emergency domestic violence shelters in New York state to have a COVID-positive shelter resident and were working around the clock to keep that resident, our other residents, and our staff as safe as possible, essentially having to become public health experts overnight. We had never experienced an emergency quite like this. We were firing on all cylinders for days on end.
By Thursday, March 26th, things at work were largely under control, and I took the day off to decompress. It was a beautiful day, and my husband of 17 years, Frank, and I decided to hike a new trail in our area. I knew something wasn’t right pretty soon into the hike, which started out largely flat (no incline). I just could not breathe right, and I had to keep asking him to slow down. I said to him, “I may be getting a cold or something.” Honestly, it didn’t cross my mind at that point that it could be COVID-19. But as we hiked on, I couldn’t help thinking something was really wrong. Frank and I are avid hikers. Every vacation we take revolves around hiking a national park, easily doing 8-12 mile hikes each day with steep inclines (and then hitting the hotel pool in the afternoon with a cocktail in hand – it’s all about balance). We cut our hike short, early, and headed home.
That night I checked my work email and discovered I and a few of the staff I manage, had been exposed on March 12th to a community partner who tested positive for the virus. We were advised to quarantine for 14 days and to try to get tested. This is the moment it started to hit me that I likely had the virus, and I started to become afraid. I replayed my exposure to this person over and over in my head. He was in the small conference room in our shelter having a meeting with a client we shared in common. Then they all emptied out into the hallway after their meeting, and we exchanged pleasantries for a few minutes outside the conference room. We were all unmasked (it would be another week or two before the CDC recommended wearing one). I then entered the small conference room with a few other staff and sat exactly where the infected staff person sat for his meeting. This entire scene, normally unremarkable, played out in my mind like a slow-motion movie. I decided then, that I would go get tested "officially" in the ER, the very next day. I tried to push the fear to the back of my mind and tried to enjoy the rest of the evening.
The next day, March 27th, I went to get tested at the ER department of White Plains Hospital. At this point, with the COVID-19 being so new, no one really knew if the virus was airborne or on surfaces. I’ll never forget coming home from the ER, stripping out of all of my clothes, and sealing them in a garbage bag until they could be washed. I felt like a biohazard. It took 10 days for the results to come back, during which time my PCP told me that I needed to consider myself infected and to quarantine at home, away from my husband. My test came back negative, but my PCP was sure that I had the virus.
Luckily, my husband and I had moved in 2019 to a larger home, and I was easily able to quarantine on the other side of the house. I only came out to eat. I had my own bathroom, bedroom, and TV room on the other side of the house. At the time, we had two cats, both considered seniors. It was unknown if the virus could spread from humans to pets, so I had to limit my contact with them as well. That was super hard. One of them in particular is very attached to me. I would let him sit on my lap, but I wouldn’t pet him. It broke my heart.
In those early days of being sick, my symptoms included constant shortness of breath, intermittent fatigue, and lung burning. I never had a fever or a cough. I never lost my sense of taste and smell. I had some minimal GI issues. It seemed like a pretty mild case, and, with the exception of a few days where I had to take an afternoon nap, I kept working remotely. I think I took one full sick day in the first two weeks. I was 44 at the time I got sick, in excellent health. I exercised 6-7 days/week, played volleyball and tennis, hiked, and ate a pescatarian diet for the last 20 years. I was convinced it would run its course and I’d move on with my life.
I only felt truly awful one night, laying in bed watching horrific stories of COVID-19 playing out on the news, while laying there, struggling to breathe. The words of my PCP kept ringing in my head, “the last place you want to be is in the hospital right now. Only go if you have shortness of breath while sitting still.” I told myself I was going to be okay, but I cried myself to sleep.
After about day 7 or 8, I started to feel better. I thought “okay, this is like the flu, and it must be ending.” Tired of being completely inactive for the last 8 days, I decided to do some light yoga. I did about 30 minutes. The next day, I had a complete relapse of symptoms that lasted for several weeks. About a month into it, I developed a new symptom: a tingly/cool/numb feeling on my skin that would rotate among my limbs. The best way I could describe it to anyone was that it felt like someone had rubbed Icy Hot or Ben Gay on me. The skin was tingly and numb, but my limbs inside were burning.
In late April, I decided I needed to take the two weeks of paid federal COVID sick leave, to give my body a chance to recover. I had been working every day up until then, experiencing unrelenting fatigue, shortness of breath, lung burning, and now the issue with my limbs. The day I stopped working, I did an hour-long live radio interview for my job on domestic violence during the pandemic. I collapsed on the couch afterward. The nerves and stress combined with having to be clear-minded and articulate just sent me over the edge.
I called my PCP and she told me to come in for a chest X-ray and bloodwork. Everything came back normal, and that was when her tune toward me changed. “I don’t know what to tell you, Amy, you’re perfectly healthy.” I insisted that I was not. She had been my and my husband’s PCP for about 15 years at that point. She knew that I was healthy and well that entire time up until now. When I asked her if these symptoms could be remnants of the virus, she replied in a snarky tone, “Amy, your guess is as good as mine.” My guess was as good as hers? She had a medical degree; I didn’t. I decided right at that moment that I was DONE with her. No one gets to treat me like that and stick around. I found a new, highly recommended PCP.
In May, after I returned to work, I started having new symptoms. I was having significant gait/coordination problems, muscle weakness in my legs, and I developed the brain fog that other long haulers reference. I was using incorrect words for things, or wrong verb tenses. I have a reputation as being the grammar police, so this was quite abnormal and disturbing to me. I shared all of this during a routine appointment with my headache specialist (I have suffered from migraines on and off for many years), and she was concerned. She immediately believed I had had COVID in spite of my negative nasal swab. I had also had a negative antibody test toward the end of May. I was totally perplexed.
Then, seemingly out of nowhere, all of my symptoms went away the last week of May. I was so relieved to have finally ‘kicked’ this virus (or whatever this was). For three weeks, I lived my life as I did pre-COVID. I worked, I exercised, I hiked, I went running. Everything was great.
On June 12th, I felt some fatigue setting back in. Saturday, June 13th was my 45th birthday, and I was determined to have a great day in spite of the nagging fatigue. I early voted in the primaries, I had a delicious lunch at a favorite spot, and my husband and I hiked. We went to dine outdoors on the Hudson River; the weather was perfect. I had two Moscow mules, which I enjoyed very much. I was tired, but I pushed it aside. I had a great birthday. That would be the last of the really good days.
I relapsed the very next day and have yet to emerge from it. All of my symptoms returned: extreme fatigue, shortness of breath, lung burning, losing my voice intermittently, brain fog, burning/tingling limbs. I was crestfallen. I landed in the ER on June 17th, due to extreme shortness of breath. All the tests they ran, including a CT scan of my lungs, came back normal.
I decided I had to start seeing specialists to figure out what was going on. In the meantime, my headache specialist sent me for a brain MRI with contrast, which showed a small brain lesion in my corpus callosum that wasn’t there on an MRI I had in October 2018. She sent me to a neurologist who specializes in MS just to rule that out. It was a scary few weeks when I tried to keep my mind off of having MS.
Additional bloodwork run by a rheumatologist and an infectious disease doctor all came back normal. The ID doctor could see that I had the Epstein Barr virus (mono) in my past (I was 16 when I had it). The neurologist sent me for additional MRIs on my neck/spine, which uncovered a small, benign cyst next to my spine, but no additional lesions. An EMG nerve test showed slight nerve impairment in my right arm. I started with a new PCP who was supportive and kind. She put me on venlafaxine (Effexor) for the neuropathy (burning/tingling), which largely helped.
Through June and July, I kept working. I have a high-stress, high-needs job, and it didn’t really occur to me to stop working entirely. My husband had retired from his job on March 31st, and we relied on my income to pay many of the bills, while we waited for his pension to kick in. I had many days where the fatigue would land me on the couch even during the workday. At night, I would lay down and stare into space, my limbs on fire, my brain completely spent. My husband has been incredible through all of this. He has done everything inside and outside the house. He has been my shoulder to cry on (a lot). He has been the only person I’ve been able to hug every day. I couldn’t get through this without him.
It was sometime in June when I also discovered the long hauler support groups on Facebook and Body Politic/Slack. It is quite an eye-opening feeling to discover that this thing you thought you were suffering through as a total anomaly is actually being experienced by THOUSANDS of others around the world, perhaps millions. I learned, and continue to learn, so much through articles, videos, and webinars shared. I have joined countless studies. But most importantly, I have gained a community of people who can not only share their symptoms to see what others are experiencing but can also share days of strength, weakness, anger, sadness, grief. I have yet to meet any of these folks in person, but I can now count many of them as friends.
New symptoms have come and gone: the skin under my fingernails periodically turns purple and stays that way for months. I wake up one day and randomly, the skin on both of my hands is peeling off; it completely goes away the next day. Almost every day, I have this feeling like my blood is “gurgling,” like someone opened a can of seltzer in my veins. Random muscles twitch. My oxygen levels drop to the low 90s when I’m crashing.
I stopped working in mid-August after one of my doctors who knows a lot about my work called me and said, “Amy, if you don’t stop working, you will never recover.” It scared me, but it also gave me permission to surrender. I have an amazing boss, one of my mentors in life. I have incredibly supportive colleagues. My three direct supervisees said, “We got this, boss. Please go and get better.”
I am still on leave, and likely will be until December or January 2021. In the last few months, I have seen a cardiologist, dermatologist, pulmonologist, and a new infectious disease doctor. I have been diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), not uncommon after major viral illnesses. I now have asthma and am on two different steroid inhalers; I never had respiratory issues in my life. My new infectious disease doctor specializes in ME/CFS. She did more extensive bloodwork and discovered that my Epstein Barr virus has in fact been reactivated and that my T cell count is low, which likely contributed to me becoming a long hauler. I am now on a high dose antiviral (famciclovir) to address the Epstein Barr and will be starting an anti-inflammatory soon also. I will need to see a hematologist to inquire about my low T cells, which could mean a predilection to certain cancers.
Last week, I hit the 7-month mark, which is still unbelievable to me. My life has completely changed. Exercise, which I love, makes me sicker. My work, which I am passionate about, is on hold. I may never scale a mountain again, or crush a volleyball. I started online therapy to handle the anxiety and mild depression I am having. I try to hold onto the hope that I will one day recover, but some days that’s a tall order. Other days, I am emotional and grateful for all that I have: The best husband in the world; a job I love; with people I love; siblings, nieces, and nephews who love their Aunt Amy; the most amazing, supportive friends in the whole world.
My best friend Lisa found me the ME/CFS specialist and offered to drive me anywhere I needed to go. Daily contact with another bestie, SueB, and my friend Susannah, another long hauler. The phone calls, the texts, the gifts that so many other friends have sent. I am loved.
My two cats – Zira and Speck – became three, as we adopted Fritzy in July. They don’t get along, and Fritzy drives us all crazy, but they have all been my companions during the darkest days. They are family too.
My advice for those who have so far dodged this COVID-19 bullet is: please don’t let pandemic fatigue set it. Please don’t let your guard down. Wear your masks, wash your hands, keep your distance. Eat well and exercise; keep your immune systems strong. I never, ever thought this would happen to me. It’s been a humbling experience. I don’t want it to happen to anyone else, especially since it’s mostly avoidable. We, long haulers, have no idea what the long term effects on our bodies and health will be. We are the guinea pigs for the world right now. The pandemic is hard on everyone, for all sorts of reasons. But it can get a whole lot harder if you’re not careful.
My husband of 17 years, Frank, and me, doing what we
love the most: being together and out in nature.
My purple finger-nails...a COVID-19 after-effect
Fritzy comforting me on a day when I don't feel so hot.
Our fur-babies: Speck, Zira, and Fritzy
ER visit in June 2020, when I had a relapse of my symptoms. I am now considered an official "COVID-19 LONG-HAULER"
One of my favorite activities, hiking in the mountains (GREAT SMOKY MOUNTAINS NATIONAL PARK) on healthier days PRE-COVID-19