My COVID19 Story
My partner and I appear to be recovering from COVID19, replete with health complications. We would like to share about our experience as we feel it could be helpful to others, maybe even save lives. I will be making a series of posts, each covering a specific topic so that the information is organized and easier to digest. Even the doctors are rushing to understand this virus, so it feels critical that we share our personal stories and insights to help connect the dots. What I have detailed below, I wish I had known going into the experience, so it seems only logical that someone else might benefit.
My personal COVID story – TOPIC #1
Cardiovascular and Neurological Symptoms
I am now in week 6 of ongoing symptoms, although I have turned a major corner in the past 48 hours.
Yesterday I made two meals on my own, spent a half hour outside in the hammock, and took out the trash and recycling. This is a big deal for me… a.k.a. …STAY HOME, you don’t want this shit. The most important thing I want to share is the lesser known symptoms of the virus that I experienced firsthand, since it’s getting minimal media attention. I share this not to scare you, but to make it LESS SCARY should you encounter these less typical symptoms with the virus.
We all know about the respiratory symptoms which are most common (fever, dry cough, sore throat, shortness of breath). I had all of those (I still have a dry cough that comes and goes) but thankfully I only had shortness of breath as a result of cardio symptoms and muscle constriction rather than upper respiratory infection. Some people test positive for corona virus with NONE of the respiratory symptoms or even running a fever at all. They are either asymptomatic OR they present with gastrointestinal, cardiovascular and/or neurological symptoms… or simply a week-long sore throat. I will post research studies and informative articles about the wider spectrum of symptoms in the comments below. Here is my personal experience of the virus affecting my heart, brain, and nervous system.
After two weeks of on and off common cold/flu-like symptoms, I emerged from an evening bath feeling “far away” and like I was going to faint. I laid down on the floor and put my legs up the wall thinking I was faint from the hot bath or having a mild panic attack from lack of sleep (my dry cough was keeping me up at night). I was startled that even with my feet over my heart I still felt like I was going to pass out and was seeing those black clouds roll in across my eyes that you see before you lose consciousness. Suddenly my heart started pounding extremely hard and fast and my chest felt tight. After 15 minutes of this, I had Randy call 911. I have anxiety disorder and I know what a panic attack feels like. This was NOT a panic attack. As someone who has had countless panic attacks in their lifetime, I have NEVER called 911 before. I knew something was distinctly going wrong in my body. By the time EMS arrived I was feeling a little better and could sit up although I was shaking visibly from all of the adrenaline. The gang of male EMS workers was dismissive and discouraged me from going to the ER. They treated me like a hysterical woman having a panic attack. They entered our house not wearing masks even when we told them we had been having flu-like symptoms. I felt embarrassed and wanted them gone. After they left, my symptoms returned a half hour later. I was up the entire night with heart palpitations, sweating, dizziness, body-driven anxiety and mental agitation/confusion. My heart was doing 110 beats-per-minute while I was lying down doing deep breathing practice. I had pain between my shoulder blades and twinges at the center of my chest. I called my doctor in the morning who immediately got me into the office for an EKG and labs. Heart tested normal and labs came back with elevated white blood count. I felt comforted that my heart tested healthy, and the doctor explained that the body can sometimes respond to a virus with arrhythmias and a-fibrillation, but that my heart was very healthy and could take it. We went home and my symptoms got worse in the afternoon. I would have moments of extreme fatigue like I was losing consciousness, followed by feeling like I was being hit with an epipen: major adrenaline rush. The adrenaline rushes felt like really bad acid trips. The extreme fatigue felt like bleeding out. On Tuesday afternoon, the symptoms got so bad that I had Randy take me to the ER. I felt like I was dying. Talking made me winded. Luckily the ER doc took me very seriously. “I would come to the ER if I was having your symptoms,” he said adamantly. Other than slightly lower than normal blood oxygen levels, elevated heart rate, and premature ventricular contractions (rogue heart beats) my heart tested healthy. My troponin levels were normal, my chest x-ray normal, my inflammatory markers normal, and I was hooked to a heart monitor for several hours = normal. The ER doctor reiterated that the body can respond to a virus in this way and that I should be very vigilant in keeping my body hydrated, attending to electrolytes, and taking Tylenol to keep inflammation down. He gave me a prescription for the nausea that came along with the heart palpitations. He said he couldn’t test me for coronavirus due to lack of tests and strict criteria (traveled out of country, high fever that won’t come down with medication, pre-existing condition that puts me in high risk category). He sent me home and said that if the symptoms got worse, “our door is always open.” That was on March 31st. I’m still having mild echoes of these symptoms, and my doctor and I are both extremely frustrated that my home holster heart monitor still has not arrived in the mail from Asheville Cardio even though the request was faxed two and a half weeks ago. Here are symptoms that I have had that you might expect if the virus impacts your heart and/or nervous system:
– slow heart rate, fast heart rate, fluttering heart, pounding heart
– heart symptoms/adrenaline rushes waking you up at night along with waking up in a pool of sweat, possibly with concurrent nausea/diarrhea
– – breathing rhythm feeling “off”; and/or sense of hyperventilating; and/or shortness of breath/constriction of breathing muscles
– heat radiating from chest/upper back (no fever, but body is hot to the touch)
– losing sense of taste/smell
– hypersensitive nerves (small sounds making you jump)
– the feeling of watching your body/mind have a panic attack even though you don’t feel anxious
– the feeling of being so weak that you could pass out
– muscle cramping and constriction on exertion as well as during inactivity
– involuntary tension in chest muscles, upper arm muscles, intercostals, upper back muscles followed the next day by weakness in those areas
– feelings of static, cold/ice, and pins/needles throughout body
– muscle weakness: loss of fine motor skills, wobbly knees and ankles, inability to give resistance with your hands (opening a jar or a box or hugging someone), arms quaking when you lift them over your head
– trembling hands
– dysphoria, disturbed consciousness
– irritability, mental agitation and disorientation, difficulty concentrating, brain fog
Here is an article about a woman who had similar symptoms to mine – CLICK HERE
Here is a comprehensive article about how the virus can impact different organs in the body: CLICK HERE
TOPIC #1 TAKEAWAYS
If you think you are having a cardiovascular and/or neurological response to coronavirus:
— get your troponin levels tested, get an EKG, get a chest x-ray
— don’t be afraid to be “pushy” and assertive with EMS workers and/or your doctor; if you are too sick to push, have someone else be extremely pushy and assertive on your behalf; there is nothing wrong with making sure that your body is okay
— order a home heart monitor as soon as possible so that your doctor can see what exactly is taking place throughout the day
— keep in mind that when your nervous system is agitated by a virus, one of the side effects is feelings of doom (even when technically your organs are actually doing a great job of keeping you alive). I got better and better at reassuring self-talk over the past few weeks, such that my internal organs and nervous system could feel like it was in an all-out emergency, but my body was mostly relaxed and my mind mostly calm
— you will likely have a loooooong recovery period but you WILL get better
My personal COVID19 story: OTHER SYMPTOMS
As super Virgos, Randy and I both believe that the CDC should be providing a more dynamic and tiered list of symptoms from mild to severe, so that we all take our symptoms more seriously and so that people are less alarmed or thrown off when they experience some of the more atypical symptoms. The personal testimonials covered by news outlets and posted on the internet have been the single most helpful source of information for me in my most dire moments because they offered me a more comprehensive understanding of how differently symptoms can present with this virus (as in my case, I had frightening cardiovascular symptoms). Early on, when Randy and I were first experiencing allergy symptoms…. and then cold symptoms… and then flu-like symptoms (in that order), we read many web articles about how to distinguish between coronavirus and allergies/cold/flu. These articles are full of shit and are spreading misinformation. There is no distinction between allergy/cold/flu/coronavirus symptoms. The only way to distinguish between them is to have access to a coronavirus test. Which, of course, most of us don’t (more on that later). Here is our list of symptoms as the virus progressed over the course of several weeks:
– allergy-like symptoms (congestion, sneezing, fatigue)
– cold-like symptoms (sore throat, itchy larynx and lungs, clammy, malaise, breaking out in sweats)
– headaches that feel akin to sinus pressure
– Randy had symptoms that looked just like a head cold or sinus infection initially, whereas I had more sore throat and mild upper respiratory infection symptoms.
– Loss of sense of taste/smell
– At the start of our second week of symptoms, I emerged from an evening bath feeling like I was “far away”. I started to feel faint like I was going to lose consciousness. I laid down and put my legs up the wall thinking I was feeling faint from the hot bath or was having a mild panic attack from lack of sleep. I continued to feel I was going to pass out even with my legs up the wall, which was very startling. Suddenly my heart started pounding harder and faster than I’d ever felt before and I became very winded. These symptoms continued for over a week, with 911 calls and ER visits of course. More details on my cardiovascular symptoms in another post…
– I started to develop a persistent dry cough during week 2. Randy never had this as a significant symptom.
– I had nausea and mild diarrhea that came on with my heart symptoms
– night sweats
– “edgy” nervous system (stress hormones releasing into your system even when you aren’t feeling stressed out)
– sudden adrenaline spikes (this is a Jenne-specific symptom)
– mental fog, confusion, agitation
– Randy had bands of tightness across his chest for 5-10 minutes every couple of days that made him feel extremely fatigued and short of breath
– site-specific muscle cramping that traveled to different places in my body over the course of the day
– Randy never developed a fever. I developed a mild fever at the start of Week 3, ranging from 99.1 to 101 and easily controlled with Tylenol. What was distinctive about the fever is that it was all over the place. It would go up and down and up and up and down over the course of an hour.
– Throughout Week 2 and Week 3, and to this very day, Randy and I have had the most extreme lethargy, fatigue, muscle weakness. Something as simple as changing the bedsheets or writing an email is an ordeal that we have to psych ourselves up for.
– The most distinctive feature of our symptoms was the way in which symptoms could come and go within the course of days or even within the course of an hour. One minute you have a head cold, then it’s gone in hour, and comes back the next day for a few hours. During Week One, I had mild fatigue and allergy symptoms that went TOTALLY AWAY for 72 hours. During Week Two, I had cold symptoms that went totally away for 72 hours. This virus is sneaky as hell and just when you start to feel better, it can come raging back more fierce than before with a whole new set of symptoms. If you get a prolonged version of the virus like we did, you will feel like your body is playing a game of chess with a viral opponent it has never encountered before.
TOPIC #2 TAKEAWAYS:
+ You can have COVID19 without experiencing a fever, shortness of breath or dry cough. Some people have primarily gastrointestinal symptoms. I will post some of the most helpful online articles that cover the atypical symptoms. But really the atypical symptoms are not even that atypical, just less common.
+ Even if you are just feeling a bit “off” or having allergy symptoms, you should limit ALL public exposure until your symptoms have totally disappeared for an entire week. You should lay low and take care of your body for several days even if you feel all better!
My Personal COVID Story: TOPIC #3
Here is a list of essential items to have on-hand even if you are not currently sick. These items have been the most helpful in basic preparedness, in relieving our symptoms, and in supporting our body’s natural healing processes.
– TYLENOL (325 mg Tabs). If you get sick and suspect Coronavirus, take 2 tabs of 325 mg Tylenol every 4-6 hours even if you do not have a fever. This was one of the most helpful recommendations by my doctor. He explained that when you are fighting a virus like the flu or COVID, your body is struggling to find ways to get rid of excess inflammation (for me that looked like a-fibrillation and waves of heat/sweat in my body; for Randy it felt like fullness and pressure in his head, etc.) Regular doses of Tylenol helped to suppress some of the scarier symptoms for both of us. I usually take Ibuprofen when I get sick, but as many of you are seeing in the news, it is controversial at this time as there are small studies that suggest that Ibuprofen may worsen inflammatory lung conditions, so we decided to err on the side of caution, and my doctor supported that decision. Be aware that Tylenol can be dangerous for your liver if you take too much, so please follow the label directions conservatively.
– ELECTROLYTES. Both my primary care doctor and the emergency room doctor explained to me that when you have a virus/inflammation in your body, your body will soak up water like the desert sand soaks up rain. They both explained to me that what doctors are seeing with COVID19 is something akin to high altitude sickness where electrolytes are getting way out of balance even if you are doing your diligent duty of hydrating. If you suspect you have coronavirus, start hydrating like nobody’s business. We should all have in our pantries one or more of the following sources of electrolytes (even if you are not sick right now!): coconut water, Emergen-C packets, gatorade and/or the ingredients to make homemade electrolyte water: lemon, salt, honey. Have lots of fruit at the ready. Oranges and tangerines have been our favorite fruit by far during the past three weeks as it replenishes vitamin c and some electrolytes and the natural sugar helps a little with fatigue/wooziness.
– VEGETABLE BROTH. You will need to replenish essential minerals for your body to mend itself. Inflammation and stress deplete your body of essential minerals. My dear friend made me a high content mineral broth that made me feel better than just about anything I put in my body over the 3 week course. Here is a link to the recipe she used. I recommend making some now and freezing it for when you need it: https://www.rebeccakatz.com/magic-mineral-broth
– VITAMIN C. Order yourself a big container of Vitamin C powder. Most integrative doctors are emphasizing this especially for COVID19, and I could tell a difference once I started taking it on a set schedule.
– THERMOMETER. It’s important that you are able to monitor your body temperature. You will need to head to the ER if you have a high fever that you are unable to reduce through medication.
– PULSE OXIMETER. A small device called a pulse oximeter, which measures heart rate and oxygen levels through your finger tip, could help people know to go to the hospital while they could still be helped simply, rather than when they are crashing. The methods of helping people through to recovery have improved greatly in a few weeks. But our reporting of our oxygen levels before the body is in distress takes the burden off hospitals and assures in almost every case a much better outcome.
– EMERGENCY ROOM BACKPACK. If you have to go to the Emergency Room, they will not allow anyone to come in with you, and your loved ones will not be allowed to visit you (as an important precaution). I actually delayed going to the Emergency Room for this reason because I was petrified of being alone in a hospital with my scary-ass symptoms. I cried like a baby when we made the decision to head to the hospital, and I cried like a baby in the lobby when Randy couldn’t come with me any further. Please be comforted by the fact that at this time there are nurses and social workers who will sit with you while you wait to go back for triage. I was extremely comforted by this, and nurses regularly came in to check on me once I was taken to my room. In light of all of this, even if you are not sick right now, you should put together an Emergency Room Backpack for your family to have on hand. This ER Backpack should include:
– a charger for your phone so you can be in constant contact with your loved ones
– a copy of your insurance information
– a copy of your living will and/or advanced directives
– a piece of paper that lists your current medications, any known allergies, and any ongoing medical conditions
– a list of important phone numbers in case something happens to your phone (your family, your partner, your close friends, your employers)
– warm socks, change of underwear
– protein bars
– any items that might be comforting to you (mala beads, rosary, special fidget stone, kindle or other reading material, etc)
– any other items you know you would be happy to have with you in the case of a trip to the ER
– UNYIELDING SENSE OF HUMOR and OPENNESS. Don’t stop making wise cracks and puns and jokes if you get sick. Whenever I got too serious and somber and fearful, I started to feel sicker, entertain worse case scenarios, and my anxiety would go through the roof. A little humor and levity can quickly change your brain chemistry and your outlook. Even when I was in the Emergency Room, I sent funny texts back and forth to Randy and Sarah. It helped to comfort me. When I was in the ER, I asked myself, how is this extreme fear helping me right now? Is it possible for me to allow myself to feel this fear in my body AND to also sense a larger psychological landscape available to me that includes deep love and compassion for myself, and gentle curiosity/inquisitiveness about the novel nature of this experience (pun intended!). Can I inhabit a container of experience that only has extreme fear as a part of it? What might that look like?
My personal COVID story – TOPIC #4
I had a pretty intense symptom relapse after week 3 when I thought I was finally getting better that included stronger gastrointestinal issues as well as more pronounced muscle weakness (I started losing fine motor skills, and my arms would quake if I tried to lift a dish over my head… I got winded trying to wash my hair in the shower). My friend Sarah discovered this article in the Washington Post that really sums up my current recovery experience: CLICK HERE TO READ. According to sources cited in the article, apparently even some folks with “mild symptoms” can end up with long-winded symptoms cycling on and off for weeks. The lesson here, for me anyway, is that even if you’re starting to feel better, REST. Err on the side of rest. Just say “NO” to productivity. It’s harder than you think. I’ve really struggled with denying the urges to move around and do stuff when I feel even just a little bit better, especially after weeks of illness. Now that I’m in Week 5, I feel like I’m finally getting the message to be extremely conservative with any energy resources that arise.
Also, we need more freaking tests. How am I supposed to know when I’m no longer shedding this virus if symptoms can linger and cycle back around for a long period of time?
TOPIC #5 TESTING
I was never able to get tested, but my doctor outwardly acknowledged that it is logical to conclude COVID19. There are so few tests in Buncombe County that even I didn’t fit the criteria to be tested (criteria such as: traveled out of country or know someone who did, unrelenting high fever uncontrollable by meds, high-risk conditions like diabetes or COPD concurrent with coronavirus symptoms). A friend of mine at Mission says that there are in-patient beds being tied up by nursing home residents who were sent to the ER with coronavirus-like symptoms. Their symptoms have since cleared up but they cannot be sent back to the nursing home until they test negative for coronavirus (except that there are no tests available for them!). Even JK Rowling couldn’t get tested despite having all the symptoms. The numbers we are seeing in the media of “confirmed cases” are only a FRACTION of the real numbers.
David Forbes of the Asheville Blade reports:
“Today (April 20th), for the first time since late March, county officials revealed how many COVID-19 tests have been done locally. Around 1900. The last time they reported those numbers, on 3/27, around 1200 tests had been done. That’s a massive decline that means very little testing (less than 30 a day) was done since they last reported those numbers.
They only revealed this after a lot of public outcry and it’s now easy to see why. While county officials noted the number didn’t capture all the testing done by private providers or some of the new tests at mission, it still paints a pretty dire picture. Previously, county officials had mentioned testing shortages and that the case numbers were an “underestimate,” but this is far worse. Recently, the harm reduction group Steady Collective warned of a lack of testing giving “falsely low” numbers. They were right.
This means the unusually low case numbers here are due far more to a lack of testing than a lack of spread and that the scale of the crisis is certainly far worse than much of the public believes. It makes it a lot more likely COVID-19 deaths aren’t being reported.
It’s appalling that it took this much fighting to get this basic information. Once again, local officials seem more concerned with downplaying a crisis than informing the public.”