Today is my one-year anniversary.
It’s very rare to know the date of the day you got sick, but I know. Because over the past year I’ve seen over 20+ doctors and had to recount this strange story more time than I can count. At some point, early on, I opened up a note in my phone and began to track dates and symptoms so that I could update the Drs I was speaking with.
So here you go:
I was unusually exhausted before that Monday the 23rd, but the 23rd is the day I got my first fever. The 23rd is the day I stopped dismissing my fatigue as paranoia and stopped sending the ‘that you, Rona’ meme around when people would point out my cough. The 23rd is the day a friend asked me to look up the nearest ER. So, when Drs ask for the date of the onset of symptoms, I say the 23rd.
Tuesday the 24th I contacted my first dr. when the shortness of breath and chest pain started. They gave me a steroid inhaler and medication for the cough. They told me to call back if the inhaler didn’t fix the breathing in a day or so.
By Friday my coughing was better, but I had, what I call in my notes “tingly face”. I was faint, lightheaded, and had body aches. My shortness of breath wasn’t improving so I contacted the Dr. I asked about a COVID test, but if you remember these early days – tests were not for folks like me. They were for people in the medical profession only.
I felt like I was getting better on Saturday and Sunday.
Monday, March 30, I felt like I was hit by a bus. I was having a hard time breathing, couldn’t get out of bed. I contacted another dr online and was sent to an open-air clinic the next day.
On Tuesday, the 31st, when I arrived, my blood pressure was 174/97. The nurse thought it was a mistake so she took it again. It was higher. She chalked it up to stress. They said I had decreased breath sounds on my lungs and started me on my first Z-pack. They did a flu test. Negative. I was assured that I’d be 100% better by the 4th when the z-pack had finished.
I was in bed the rest of that week and didn’t really get out until April the 4th, when my entire body felt like it was turning inside out, food poisoning style.
April 5th, they sent me back to the open-air clinic and asked me to do an anti-body test. They didn’t have COVID tests, but they had just gotten the first anti-body test and were excited to try it on me. Of course, as my cardiologist would later explain, I wouldn’t have tested positive for anti-bodies at that specific time. They caught me at the exact wrong window. But because the test was negative, everyone breathed a sigh of relief and told me to just call them if my symptoms didn’t improve.
They didn’t. On April 7th, I talked to my sixth dr. They prescribed a steroid. By this point, my cough was the kind that makes people uncomfortable with how it sounds. He thought I had bronchitis or a blood clot. “Hard to say which” but the steroid would knock it out if it’s the former.
April 8th I got my least favorite symptoms. I was dizzy, shaky, light-headed, without a fever, by a headache and shortness of breath. I felt like I had permanent hypoglycemia, the kind that you couldn’t stop by eating.
When I talked to Dr. #7 on April 9, my cough was different. I wrote in my notes before the call: “Cough is like it can’t get deep, which is maybe good?” By now, the pains in my legs had started and my pulse was strange. This Dr was an ER friend, and he said it was time to see a dr in person.
So I went into my clinic on April 10th and saw Dr Garcia (I’m a fan). He prescribed me with a fairly intense antibiotic – that – no joke – says – RIGHT ON THE LABEL – that it’s for the treatment of the plague. He told me if I wasn’t better by Monday we needed to take some steps.
April 11th was a Saturday. I know that because it was my least favorite day of the Covid situation. I was feeling terrible, shaky and just strange. Not the kind of terrible that feels like flu. That kind, I at least have space for mentally. This kind of terrible was like – something is wrong with my body. And then I lost a large part of my vision in one eye. Only for like 45 seconds. But it was enough to have me thinking something was really wrong. But ya know – I’d learned by this point that my insurance – which would have covered 100% of my bills if I’d tested positive for COVID – was going to cover 0% because I didn’t. No amount of explaining – I couldn’t get a test – was helpful for them. So, by this point I was weighing the symptoms each night: do I need to go to the ER? And most nights I would think to myself: did I leave the door unlocked so the EMS can get in?
On Monday, April 13th – SPOILER: I wasn’t better. Dr Garcia (I’m a fan) said my lungs were inhaling GREAT but they weren’t exhaling. It’s like I couldn’t clear them, which explained a lot of my symptoms. So they started me on a nebulizer. They also started me on something for a yeast infection IN MY esophagus. That’s right folks.
The nebulizer was my best tool so far. By the week of the 20th I felt like I was turning a corner. But then the fever came back. And the heart really started acting up: skipping beats, changing rhythm. Fun stuff.
It seemed at this point like I needed a long term dr, instead of seeing like whoever was available. So, I got a primary care physician, Dr Ericson (I’m a fan) and she has been awesome. When I first saw her, towards the end of April, these was the list of symptoms I typed up in my notes:
- Low grade fever ever afternoon
- Headache/foggy head
- Heart- skipping/ high/ low
- shortness of breath
- Tingling hands and feet (and the ol’ tingly face)
- Pain in arms/legs and chest
- Hair loss
- Bruising – I didn’t mention yet that I woke up one day with a black eye. TOTALLY RANDOMLY.
- Slow to heal
She ran all the blood work in the books. And she listed to my story. And she didn’t have the answers, – but she said one thing that at this time was incredibly helpful. She said: “I’m seeing back-to-back patients like you.” It was a sentiment I would hear again from the hematologist she referred me to. And again from the cardiologist I was referred to. And again from my second cardiologist.
And let me tell you hearing this was like coming up for air. Remember, this was before they were doing podcasts on Long-haul before there were articles or even a name for it. It was before I was in the facebook group with thousands of people who post things like: “anyone else lost the half-moons in their fingers” – to which we all look down and then respond: YES!!!!
To hear that this was happening to other people was terrible news, but also a relief. It meant I wasn’t crazy. I wasn’t alone.
By May – I was seeing a hematologist because the only thing that came back funny in my blood work was my blood clotting time. The hematologist took one look at me in our virtual session and sent me straight to Texas Oncology for blood work and then straight to the hospital next door to check for blood clots in my legs.
The only thing that came back was that my Iron was off the charts high. But that, she explained, could be because my body had recently had an intense bout with a strong virus. (seems plausible).
I saw my first cardiologist toward the end of May, she did an ECG and gave me a beta-blocker for my PVCs which were happening for hours and hours at a time at this point. She did a stress test. With my symptoms, they expected me to struggle: maybe need to stop after ten minutes or so. By 3 minutes (before I did anything but walk) my blood pressure was so high and my breathing so bad I had to stop. Cardiologist said the results showed I was “severely deconditioned”. As if I hadn’t exercised my entire life. In March of 2020 I was running a few times a week at my gym, between 4-6 miles a time. I wasn’t in the best shape of my life, but I was a consistent runner.
I remember driving home from that stress test feeling strange. Almost disconnected from myself; from this body that was a stranger.
In June, my GP started me on Fibromyalgia meds because the body pain was getting so bad I couldn’t sleep. One night I thought I must have broken my arm, but I woke the next day and it was fine. The theory goes, that my sweet brain, along with my heart, is inflamed. So the nerve centers are confused.
Time went on. Nothing really improved. Each time I saw my dr she would ask me if anything was better with a hopeful face, and I wanted to encourage her, I really did. But anytime I thought things were getting better, I’d be knocked off my feet the next week.
I haven’t really mentioned the fatigue. But by August, that was causing some serious problems in my life. I couldn’t get through the day without multiple naps. Even now, it’s hard to do. My body is tired. Like – REALLY – tired.
I had a few weeks in September where I felt pretty good. But then the pain came back. I met with a specialist on Long Haul in San Antonio. She told me the working theory (the inflammation thing) and encouraged me to try to do PT. In November I met with a specialist through a friend of mine, opening a clinic in NY.
Late fall, the heart got worse. At night, my oximeter would read my heart at 30 bpm. My cardiologist doubled my beta-blockers, and I felt like I was drugged. I could barely function, and my heart was still wildly unpredictable. I texted a friend whose father was a cardiologist and then told me I need to see another dr. So I did. A new cardiologist (I’m a fan). Dr. Geisler has been awesome. She was honest from the start: no one has any idea what’s happening, but we’re learning as fast as we can, and I’m trying things with new patients. She gave me medication for heart failure, (and I think this has helped a lot!)
On December 26, I pulled a window out of the wall down on my head and gave myself a concussion, so my symptoms after that were…muddled.
In January of this year, I had an ECHO, just to check my heart, and all looked okay except for my “systolic being dynamic.”
In February, I think things took a turn. My energy level improved drastically, (and I really do think it’s related to that miracle heart failure drug!)
Overall, today: I’m doing okay. I’m tired. I have good days and bad days. I sleep a lot. But I’m thankful to be able to work a full-time job. That wasn’t the case five months ago, three months ago. I took a walk today. I’ve been able to take walks over ten minutes for the past month or so. I still get short of breath, and I still have joint pain. But I can do it. And that’s nice.
I keep a marker by my desk so that I don’t forget the random symptoms that continue to crop up. (like my hands start shaking really hard, or I get headaches if I sneeze). It feels like each week something new and strange happens. Maybe I’m just paying more attention?
Welp. If you’re still reading. Thank you. It was helpful for me to type all this out. And despite everything you’ve read, this past year of my life has truly been one of the best. It’s been marked by freedom and healing.
When you’re lying in bed, unable to achieve for week after week after week – you learn that maybe your identity really isn’t in your work. 2020 was going to be the year I wholeheartedly pursued building ministry, but instead, it was the year I let go of everything that wasn’t essential. 2020 was going to be the year I got a good rhythm of life, but instead, it was the year I learned that life is happening right now, and we are as precious to God when we’re throwing up in the bathroom as we are when we’re preaching sermons. We are as able to fulfill our purpose when we are sick in bed as we ever are.
So many people carried me through this year: the friends who brought me things; the friend who called me when my eye stopped working and through the phone had me put both my arms up and smile to be sure I wasn’t having a stroke; the friends who sent me Long Haul articles; my friend/boss – who paid me the ENTIRE year without hesitation – who has NEVER once made me feel like a bad employee, although I have been unable to produce for months; my sweet, precious family who are just the best.
I could cry typing this out.
I don’t have the energy to re-read this post to edit or to spell check.
Let each type-o be a time capsule of this strange year.