I Haven't Been Blogging Because I've Had Covid-19 for 80 Days. Here's What It's Been Like.

I don’t want to write about this disgusting virus, for two reasons. One, to write a thing down is to give it power. I don’t want this virus to have any more power than it already has. Two, I’ve been sick for 80 days. Eighty. Days. And as I sit at my desk to write this, my energy, while finally and slowly improving, is still low. While, yes, many people do recover from this virus in about two weeks, and, yes, others get very sick and die within six weeks, there are others, about 20% according to new research, who fight on and on, not recovering and not dying, just being slowly destroyed and, in some cases, very, very slowly getting better with lots of relapses and setbacks along the way. It is still too soon to know which of these two last groups I belong to. I'm still sick. I'm not as sick as I have been. But I've also felt this way several times before, only to get suddenly even sicker. As of this moment, I've had five consecutive good days. That's more than I've had since this started. But I'm not celebrating. I'm terrified. This process has given me a sort of traumatic terror of my own body. The virus, when quiet, feels more like a serial killer who is stalking you through a darkened warehouse, whose footsteps suddenly disappear. There has been no sound of the door opening and closing. It's still here. Or is it?

I will write about this disgusting virus even though I don't want to. Even though I'd rather take another nap. I will tell you the many and ever-shifting ways it has manifested in my body these past three months, many of them nowhere to be found in the official lists of symptoms but found everywhere in online forums filled with people going through the same nightmare. I do this in the hopes that all my suffering - both the suffering inside my body, and the suffering at the hands of a highly dysfunctional for-profit medical system designed to invalidate and minimize rather than to heal - will shed light on as-yet ignored realities faced by those impacted by this disease. I want to give public voice to the thousands, maybe millions, who are going through something like what I am.

The last time I went anywhere in public was March 13. I went to a Walmart in Edgewood, New Mexico, to stock up for the quarantine, thinking that the stores in Albuquerque might be too crowded and, you know, that was risky. We weren’t social distancing yet. We weren’t doing face masks. I wiped down the cart, and went in the store. I was close to lots of people as we laughed in astonishment about the shortage of basic goods. I argued with a man in the checkout line, as he bitched about socialism. I touched the keypad to pay. I was careful not to touch my face, but I didn’t disinfect the items I’d purchased. Maybe it was there that I picked up this bug. It could also have been at the elementary school where I’d just been hired to teach a combined 3rd and 4th grade class; I stopped by to pick up my work-issued laptop, so that I could do some lesson planning during what we then thought would be a week or two of lockdown, a lockdown that coincided with spring break.

The day before that, I’d gone to my therapist’s office. We talked about how I wanted to break out of my introverted writer’s isolation now that my son was away at college and I was all alone, how I wanted to start meeting new people and socializing and, yes, maybe even date again. We’d made a detailed plan of things I was going to start to do to make my single mother’s new empty nest less a source of sorrow and more a spring of self-discovery. There’d be church again, and dance classes, and hiking groups, and book clubs. Maybe I caught it there.

I picked my son up from the University of New Mexico dorms the evening of March 13, to bring him home to isolate with me. He’d been having worse than usual allergies, and a mild fever. Maybe he caught the virus at school and brought it home. Or not.

Five days later, on March 18, my nose surprised me. It began to drip, but not the usual little sniffle of a drip from my mild hay fever. This was out of nowhere, no warning, clear watery liquid just pouring like clear broth from both nostrils. I was reading, and then there it was, a faucet of water dripping all over my book. It was shocking. I’d been doing some weeding in the backyard earlier, so I thought it must have just been bad allergies. After all, there'd been a high pollen alert on my phone. When I started to cough later that day, I thought little of it. When the splitting headache woke me up two days later, I joked to my son that maybe I had it, but given my exercise-induced asthma and propensity for migraines, how would I really know? He told me then he had a headache, too, and felt feverish. We didn’t have a thermometer in the house, but I also felt a little warm. We knew little about the virus yet and figured if that’s what it was, being not elderly or sickly we’d hopefully just have the “mild flu-like” version for a couple of weeks and be done with it.

The next week, my son went to his father’s to hang out there for a while with his other family - in addition to the dad there’s a stepmom, two stepsisters and a step-nephew. The day I dropped him off, still disconcerted about my headache and runny nose and cough, I went to a drive-up covid-19 testing site in Albuquerque, at the Balloon Fiesta Park. They stuck the swab in my nose. I went home.

Four days later, the results came in. Not detected. Negative. I was relieved, because back then I still believed in the tests’ ability to accurately assess people. I went about my business, feeling a bit rundown, but attributing this to the stress and loneliness of quarantine.

On March 25, I woke in the most excruciating muscle pain I’ve ever felt. A massive spasm gripped my entire torso. I couldn’t move and could barely breathe. I was alone. I thought maybe I’d pulled my back out gardening, trying to build a compost bin. I called 911, after some reluctance. I needed help, but I didn’t want to go to the hospital because everything I’d seen in the news braced me for mayhem and covid-19 patients everywhere. I certainly didn't want to get that! The paramedics came, without masks or gloves, because we weren’t doing that yet, and they took me out of the house on a stretcher. They gave me painkillers and muscle relaxants. In the ER I told the doctor I’d had some coughing, headache, chest tightness and a low-grade fever, and now, this. He looked at my chart, saw the negative covid test, told me I was fine, gave me opioid pain meds and a powerful muscle relaxant, and sent me home.

March 26, I feel worse. I have a higher fever, 100.2. I call the nurse’s line for my insurance. They tell me that’s not a fever. It’s only a fever, they say, if it reaches 100.4. Because that’s what their checklist says. But I’m never this hot. My normal body temperature ranges from 97.5 to 98.5. They don’t care. They tell me I’m fine. This is when I notice my heart absolutely pounding, and I check my resting heart rate. It is usually 65 or so. That morning, it is 96. This is not normal for me. I have terrible shortness of breath, I feel lightheaded. I tell myself the heart rate must be because of the meds, and I stop taking them. The heart rate continues to be high anyway.

March 27, I wake up with a terrible pressure in my chest, like someone is sitting on my sternum. I have the high heart rate, a resting heart rate toying with 100, compared to my usual 65. I’m shaking, with horrible chills that start in my spine and take over my whole body. My teeth chatter together so hard I fear I’ll chip on. I make a freezing sound like a cartoon character. I can’t move my jaw. The back pain has returned and it now radiates up into my neck. Worst of all, though, is the strange burning my chest and upper back. It feels like a dragon is unfolding inside me.

Terrified, I go to the Presbyterian Kaseman ER, in my own car. They run tests. EKG, chest xrays. My temperature, they say, is normal. The tests, they say, are normal. As I’m having another massive trembling episode, the doctor smirks and suggests I just have “a little heartburn and anxiety.” I demand another covid-19 test. They give me one, with an eye roll. He sends me home. I go, and write in my diary that I think the opioids and muscle relaxant messed with my autonomic nervous system somehow. I vow to meditate more. To relax.

My labs come through on the mychart app. Even though they'd said I was fine, the labs show slightly elevated MCHC and monocytes, low sodium. But, most disturbingly, the xray had shown a section of my lung that didn't inflate. I call the hospital to ask why they didn't talk to me about this. They tell me I’m fine. They say sometimes that happens when you don't take a deep enough breath. But I'd taken as deep a breath as I could, I say. You're fine, they tell me.

March 30, I wake up with explosive yellow diarrhea, so watery it is dribbling out of me. I have 17 bouts of this in one day. I cannot even believe what's happening. Nothing like this has EVER happened to me before.

My other symptoms continue, but I second-guess my own experience of my body now because medical pros keep telling me I’m fine.

I try to go hiking. I feel a weird crinkle sound in my left side, under the ribcage, in my lungs. On a trail where I normally hike six miles without a problem, I make it 500 yards before I feel like I’m going to pass out.

I sit on a log and wait until the sound returns to my ears. Then I carefully, slowly, walk back to my car and, with a spinning head and gulping breaths, I drive home and collapse on the couch. I’m having trouble breathing. Must be asthma, I say. I have very mild asthma, and it usually never bothers me. In my diary I write “high pollen, juniper,” and blame that. I look for my old inhaler. It's nowhere to be found. I email my PCP to ask for a new prescription for an inhaler. She sends it to the pharmacy. I get it.

That evening, I realize I have no appetite. At all. I haven't eaten all day. My belly is distended and bloated and I am suddenly belching like crazy. It feels like something is stuck in my throat. I start to clear my throat, constantly, but it doesn’t help. Nothing helps.

April 1, I wake up with terrible thick postnasal drip added to all the other symptoms I’m still having. I feel like it's going to choke me. I hack and hack but nothing comes up. Still no appetite. The burning in my chest is so bad I feel like I’m going to die. I write to my primary care provider to ask if she can prescribe a PPI. I had gastrointestinal reflux disease 15 years ago, and it felt a little bit like this. Maybe that's what this is? She prescribes omeprazole. I start to take it and hope I’ll feel better.

I try to keep walking, using the inhaler. I make it 2.5 miles and feel like I’ve run a marathon. I come home and collapse on the sofa again. I don’t eat all day. I can’t. The very thought of food makes me sick. My heart is beating so hard it feels like it’s going to stop. A new symptom comes - it hurts to turn my eyes. And my head is pounding again.

I google covid-19 testimonials and find the story of a TV reporter, Kaylee Hartung, whose case of the virus started out very much like what I’m feeling. This scares me to my core. I read more. Many who start like me progress to pneumonia. The news is reporting thousands of deaths from this. I feel like it’s moving to my lungs. I can’t stop clearing my throat. And coughing. I have to focus my mind to calm myself down. The new excruciating pain between my shoulder blades is almost unbearable.

At night, I sit in an armchair because I can't lie down without the worst chest pain of my life, and I tremble. This is not anxiety. This is a tremor from deep in my cells. I try to walk, all night, around and around the dining table. I stop to lean against the wall, the chills take over. They slide me to the floor, where I curl up in a fetal position and just quake and cry. I am completely alone. The burning sensation takes over my chest again, and my back. I have never in my life felt this bad. I force myself to the kitchen counter, and I write out a last will and testament, instructions to whomever finds me dead in my house, about what to do about the animals. I write goodbye letters to my son, my parents.

I finally have a thermometer. I feel extremely feverish, but the temperature only reads 98.4.

April 2, my second covid test comes back negative. I am having so much trouble with phlegm and throat-clearing that I’ve lost my voice completely. I can’t talk. I can barely breathe.

All of these symptoms continue, and escalate, for weeks. Added to them is a new symptom - a creeping coldness in my entire upper back. I feel something intelligent moving through my spine as though it is looking for my weak points. I can almost hear it speaking to me. This is unlike any virus I’ve ever had. This is an alien intelligence roaming my body, a bully. If a sociopathic narcissist could be a disease, it would be whatever this is, in my body right now. It settles on my esophagus and stomach. This will be its playground, for now. I feel it settle into my throat. I can’t get it out.

I have one day where I feel totally normal. I’m overjoyed. I hike. And then then next day I am slammed down even harder than before.

I’ve lost 10 pounds. Then 15. Then 20.

I am so weak I can’t even hold up my hair dryer.

I email my PCP to beg her to consider this is all covid-19, even with the negative test results. She does not even respond. I call her office. They tell me she’s on leave. The health plan has furloughed many workers because the governor has called for a halt to all non-emergency services. This is because we don’t have enough masks and other protective equipment. And that, dear ones, is because of Donald J. Trump.

If I really need help, they tell me, I need to go to the Emergency Room. I tell them I’m extremely worried about my lack of appetite and sudden weight loss and they refer to me to gastroenterologist, but he is only doing appointments by phone. When I do finally talk to him, he is mildly condescending and tells me he'll refer me for an endoscopy and colonoscopy but they won't be performed until the fall. He suggests taking antacids and eating smaller meals till then. Because he, too, doesn't believe me when I tell him this is bigger the GERD, bigger than anything I've ever had.

New symptom: ringing in my ears, that comes and goes.

Waves of dizziness.

I buy mucinex to try to break this blockage up. It doesn’t help.

The diarrhea continues. I text my friends and family and ask them to bring me Gatorade and Ensure shakes and leave them on the porch.

It makes me tired to remember and write all this. And depressed, because many of these symptoms continue to this day. And now I wonder if I'm actually getting better, or just acclimated. I’m going to include some highlights here. I can’t handle the daily play by play. Suffice to say it was all terrible.

On April 6, after insomnia and then two hours of sleep, I wake up shaking again and forced myself to eat oatmeal. It gave me chills to eat at all. I can’t stop clearing my throat and coughing. My left fingers have begun to tingle and they look mottled, fat as sausages. On this day, my right side under my ribcage starts to hurt like mad.

I call the state and demand to speak to an epidemiologist. I’ve been reading studies out of China that clearly report many people having a covid-19 disease progression identical to mine. Chinese research indicates that those who start with diarrhea and loss of appetite have much worse outcomes than those who do not. I ask if there are fecal tests or serum tests for active virus, because for whatever reason, my disease is not showing up in the nasal swab tests. They schedule me for another swab test and apologize and say fecal tests aren’t available here.

I am starting to feel suicidal. I am in so much pain, with no one who seems to believe I’m going through what I’m going through. My mom and dad both want to come help me, but I don't let them, because what if I get them sick? No. I have never felt so afraid, exhausted, and alone, and I’ve never felt this much pain. My entire abdomen hurts and is bloated. But the pain on the upper right has gotten unbearable.

April 7, I call my PCP’s office again and demand to speak to someone, anyone. They put me in touch with a PA who is filling in for my provider, who is also a PA. The substitute actually listens to me. I tell her my stools have begun to turn pale. Gray. White. Very pale beige. This alarms her. She manages to get me scheduled for a HIDA scan, of the gallbladder - even though xrays and CT scans from the ER visits have shown the gallbladder to be “normal,” and even though this was never suggested by the smug gastroenterologist who suggested I just slowly die till the fall with a Tums on my tongue. She believes me. Her name is Mikal Smoker and she is the only good healthcare provider I've had in three months of hell.

My arms feel too heavy to move them. I cough up phlegm.

April 8, a new and disturbing symptom arrives. Every time I try to fall asleep, a muscle somewhere in my body jerks, one time, very hard, to wake me. This is not the normal hypnic jerk we all experience from time to time. This feels like a bully of a virus is watching me fall asleep, knowing that me resting would be bad for it, and it waits until I’m right at the threshold between waking and sleeping, stepping into sleep, to wake me. The virus is a puppetmaster. First, a finger. Jerk! Then, a leg. A toe. My entire head. Dozens of times, until, hours later, I finally fall into a terrible slumber filled with vivid nightmares.

I continue to reach 99.3 every afternoon. Some days, 100.

I have very dark diarrhea a couple of times. Then, pale as paste.

Something is so very wrong inside my body. I am so sick.

In a panic, I send all the unpublished manuscripts I have to my editor at St. Martin’s Press in the middle of the night, telling her I’m dying from covid.

April 9, I lose the new job at the school because I cannot teach, even online. I have no voice, completely hoarse, and I have no ability to concentrate. No energy. I am not unemployed, broke, and sick. And alone. I apply for unemployment. It is denied because I quit my last job.

I’m on my own. And dying.

I take myself to the Emergency Room at Rust Medical Center in Rio Rancho. I am equipped with printouts of the studies from China, published in the American Journal of Gastroenterology, ever the thorough reporter. I beg the admitting doctor to please believe I have covid-19 even if my nasal swabs were negative. What else could this be? I have all the same symptoms and thousands of covid patients in China, India, Italy. The doctor looks at the article and scoffs. “This is America,” he tells me. “We don’t use Chinese science here. If the AMA says it, we’re in business.” He sends me home. The nurse takes me aside and says I might have some good points but trying to outsmart a doctor is never a good idea. “It’s not a good look,” he tells me.

“I don’t care how I look,” I cry. “And you’re not the one dying.”

April 9 I begin taking protonix, 80 mg a day, to battle this burning pain the doctors tell me is reflux. But this pain is to reflux as pneumonia is to a sniffle. I’ve never felt anything worse. The drug helps after a few days. But it causes problems elsewhere. Food is just running through me now, coming out undigested. I am pale. My skin looks like it has aged 20 years.

I do research at home. I write in my journal “If this is covid, I can expect 40 days of this.” That’s hilarious in hindsight, and I write this, day 80.

I get the HIDA scan. It shows that my gallbladder ejection function is only 19%. Anything below 35% is considered dangerous. The organ needs to come out. I feel some relief. Maybe all of this is nothing but my gallbladder! It could cause a fever, right? And indigestion? I've never had gallbladder disease before, so I have no idea. But I feel like maybe I've been wrong about the cause of my pain. Maybe the end is in sight!

New symptom emerges: A strange feeling that I’m wearing a tight hat or headband. There is nothing on my head. Does a gallballder do that? Who knows.

I notice now that the stools I’m having, runny or solid, just smell off. They smell horrible. Like mothballs. Sometimes they’re green. Then they’re pale again. The smell is so weird and not like anything that’s ever come from me before.

April 10, I have a day where I feel okay again. I hike 2 miles and feel good. I’m hopeful.

April 11, I pay for the previous day. I am exhausted. I feel really unwell in my gut and belly. Still no appetite. I am starting to have difficulty swallowing. I realize that I have to write an eating schedule and force myself to do it, or die.

April 12, I’m awakened by horrible esophagus pain, chills and shaking. There is a new and terrible heaviness in my abdomen. I have a sore throat. I notice my eyes are deeply bloodshot. All the other symptoms from before are back.

April 13, I wake after sleeping 13 hours. Heart is skipping beats. I notice now that my poor cat has begun to sniffle and sneeze and his eyes are runny. He isn’t himself. He hides and licks his nose. I suspect he now has covid too. Which means I do. This isn't just my gallbladder. I sob and hate myself for exposing him to me. This will go on for three weeks, and then he will recover.

April 14, I wake to no appetite, more chest pain. Muscle cramps in my back. Reflux. Regurgitation. Pain, pain, pain. I force myself to take a business call, a job interview. I try to sound cheery. After the call I collapse in tears. The pain in my upper right is still bad, and now there’s pain in the upper left, too. I suspect this is a hernia. It feels like my stomach is in my chest cavity. I force myself to hike, thinking that maybe this is nothing. I taste blood in my mouth. My nose starts to bleed, and I am not prone to nosebleeds, ever. I am now having three to six bowel movements a day.

April 15, I am so tired I stop keeping a journal and instead input my more than 60 symptoms into a daily spreadsheet. I hike 4.5 miles by force, and feel terrible pressure in my head.

April 16, the red eyes make me look like a meth user. This is the first day without chills and no fever in a while. Only one bowel movement. Feeling hopeful. I hike 5 miles.

April 17, very sore throat, chest pain, abdominal pain, ear and tonsil pain on the right. I feel a new thing, something like menstrual cramps. I am four years post menopause. This is odd. The pain in the upper right is awful. By the end of the day I’m at 99.5 again. This is not normal for me. My stools are now yellow.

April 18, Wake up shivering. Very runny nose and tingling lips. Sharp pain upper right abdomen. I’m feverish most of the day, 99.6. Medical pros won’t consider this a fever, though. I have lots of gurgling in my belly. All the other symptoms continue. My eyes burn. I force myself to hike three miles. Still no appetite. Belly feels really tight and weird.

April 19, All the same stuff. Very dry mouth. Worst cough yet. Left collarbone pain. I can’t stop crying. I’m googling suicide methods. I think back to how I told two ER doctors I was feeling suicidal, and how they sent me home. They don’t care. My resting heart rate is 88. Doing nothing.

This all continues for days and days. They blur. I don’t want to live like this.

April 22, my son’s birthday. He’s at his dad’s. He’s been complaining of a low grade fever. They’ve isolated him for two weeks, to see what happens. He says he’s fatigued. My heart begins to break in a whole new way.

I need the gallbladder out. But no one is scheduling these surgeries. I beg the surgeon to meet with me. He agrees. But when I get to his office my fever is 102. They won’t let me into the building, because that's a new protocol. I end up in the ER again. By the time I walk there, my temperature is down to 97.5 - ten minutes after it was 102. They do a rapid covid test on me, and an hour later the results are back. Not detected. A doctor tells me there's no way I have covid, because "It's just a respiratory disease, not gastrointestinal." He's wrong. of course. But I guess he hasn't been reading the same research and medical journals I have, ones that say this disease attacks any and all organ systems. A study out of Stanford says up to a third of covid patients present only with GI symptoms. No one in NM healthcare seems to know, or care, and they really don't like you to educate them.

May 1, I go to the ER again, because the pain in my gallbladder is unbearable and because I’m suddenly having a light period after all these years of menopause. They admit me to the hospital and I have surgery the next morning to take out the gallbladder. No one thinks this is anything other than a routine gallbladder removal, but I know better. This is just one of many manifestations of this thing that is trying to kill me.

I am too tired to journal about this anymore. I make a list of symptoms and assign them to one of three categories. Constant, intermittent, and new since surgery.

Constant: Hoarseness, complete lack of appetite, rapid weight loss (I’m now down 20 lbs), deeply bloodshot eyes, fatigue, something stuck in throat, throat clearing, cough, extreme muscle cramps in neck and back, shortness of breath, anxiety

Intermittent: chills, tremors, fever, tachycardia, diarrhea, runny nose, cold spreading sensation in back, ashmat, night sweats, double cision, itching scalp and feet and hands, heaviness in arms and belly, dizziness, near fainting, twitching, headband sensation, headache, sore throat, insomnia, bad taste in mouth, weird smelling poop, dry mouth

New since surgery: upper left chest pain, can’t swallow to the point of choking on water, change in smell and taste, mental confusion, hallucinations, cold sensation in arms, heavy pressure in sternum with deep breath, extreme fatigue, white mouth sores

I hope the surgery fixes all my problems, especially the intermittent fever. It does not. These things continue. Only the pain in my upper right goes away. Everything else remains the same. This is devastating and scary.

I develop an infection on the belly button incision and end up in the hospital again.

Two days later, I can’t swallow at all, and I’m back in the hospital, admitted for five days while they run swallowing and gastric emptying tests. Turns out I do have a hiatal hernia, and it needs to be operated on. I never had this before. I think all the inflammation in my GI tract pushed my stomach up through my diaphragm. Swelling due to the virus. They say I need surgery but can’t get it for four more months at least, because the health plan simply isn’t doing elective procedures.

Labs taken in the hospital show that I have extremely high cardiac inflammatory markers (high sensitivity CRP), low folate, high homocysteine, and a Lyme screen shows I have no detectable killer T cells. A covid antibody test comes back negative. I research the other labs. They are all consistent for covid-19. I also see that as many as 70% of negative covid tests can be false negatives. I see there are many people who have the disease who never get a positive test until samples of mucus are taken from deep in the lungs, or from the stool.

This is distressing in the extreme, but because of the high turnover of hospitalist doctors (I had a different one each day) no one follows up with me and finally a terrible person called Dr. Ferguson discharges me, telling me I have no business being in the hospital and I should thank God for my perfect health. I respond that he is the only one of the two of us with no business being in a hospital, and I leave, depressed and suicidal. Something is still attacking me, it has moved to my heart and arteries, and my body can’t fight back. I am starting to think I’ll never get well. My primary doctor agrees to a phone visit, during which she listens to what’s been happening and tells me “Wow, sorry you’re having a hard time. I don’t know what more we can do for you. Sorry.” I file a complaint and get a new provider, whom I meet next week by phone. Praying she believes me.

The weeks after surgery are hard. My son comes back home to help take care of me. The healing from the surgery is hard, especially now that this is added to a body already fighting a deadly virus. I begin to lose all hope. Sometimes, I feel like I have a fever when in fact my measurable temperature is abnormally low - like 96.5.

New symptoms: burning rash on my right pointer knuckle, swollen fingers when I exercise, horrible headache, sore tongue, peeling skin on my arms and belly, weird lizard skin on my legs, tiny water-filled blisters coat both armpits. The other symptoms come and go daily, sometimes hourly. I no longer panic when I see a new thing - like the blood in my stool that lasted only one day, or the cloudy urine that lasted two days.

Towards the end of May, though, after three weeks of almost constant bedrest, with breaks for short walks around the block, I start to feel better. It isn’t an on-off switch kind of better, just a gradual kind of thing where each day I am surprised by how well I feel and how much I can do, without a relapse the next day.

But any joy this might bring me is dampened by the fact that my son, who seemed to have only mild illness two months ago, is suddenly having very scary symptoms, and he is back living with me. He seems to have the inflammatory version people in their early 20s are getting.

But, of course, we both tested negative, so no one believes us that we have this virus. When I take him to the ER for tachycardia and fluctuating heartbeat with massive fatigue and headache, they dismiss this as dehydration. My son is a long distance runner, an athlete, in good shape. He should not be having a resting heart rate of 110. I am terrified in a whole new way, a more horrible way. But the suicidal thoughts are gone as I now realize I’m needed here to make sure my son survives this.

Some observations: Doctors have not been helpful AT ALL. They are far too used to only consulting with CDC guidelines and taking them as the gospel and only truth. This is a brand new disease, and we don’t know everything about it. But the fact that so many of the doctors I’ve encountered seem very secure that they know EVERYTHING about the virus because they memorized the six or so symptoms the CDC and WHO have said to look for has led many of them to invalidate and, frankly, emotionally abuse many very sick people who clearly also have the virus, even without a positive nasal swab and even without presenting in the “classic” fashion. All these doctors would have to do is study the new research coming out. There are facebook groups with thousands and thousands of members, many who have tested positive, posting testimonials about having symptoms EXACTLY like mine and my son’s. But around here all we get are rolled eyes and invalidation from the very people we are desperately turning to for help. They check the same old labs, which, it turns out, are NOT helpful here (they need to be digging deeper, for high sensitivity inflammatory markers, for T cells numbers, for other things) and then they tell you you’re fine even though you KNOW you are extremely ill. The worst thing these “professionals” can say, and they say it all the time, is that we are suffering from anxiety or stress, and they seem to say this to women much more than they do to men. I have constant anxiety and stress in my life, always have, and it didn’t make me feel like this; it didn’t kill my gallbladder and infect my eyes. It didn’t make my resting heart rate jump and stay elevated for months. It didn’t give me a constant low-grade fever that doctors refuse to believe is a fever. Bottom line, these folks look stupid when they see a guy like my son, who is a fit 19-year-old long-distance runner whose resting heart rate is normally 55-60 beats per minute, and, upon seeing he’s at 100 say “Well, the protocol says anything over 100 is tachycardia for adults. He’s fine.” Are you kidding me? He’s obviously NOT fine, and this protocol is a guideline, not a law. Modern American medical professionals have lost the ability, if they ever had it, to think critically, to listen well, to trust patients to know their own bodies, to put puzzle pieces together on their own without someone from the CDC holding their hand to make sure they don’t get sued. This is what the US public education system and for-profit medicine has created, a monster that does more harm than good, and one that has gaslit and invalidated me every bit as much as the disease itself. I shouldn’t have to beg and fight and show up at the ER nine times in two months just to be heard about the most severe and debilitating illness I’ve ever had. If any one of these people had simply used common sense - you know, there’s a world pandemic, new virus, causes many of these symptoms, there are these two people here who previously were extremely healthy but are now completely sick, let me look into this. Nope. They are incapable of putting all the pieces together. They refer you to specialists who only look at one aspect of what’s happening, with no interest in connecting it to the whole of what ails you. Must be she has a gallbladder gone bad, they say, and they decide it has nothing whatsoever to do with the rest of it. For the heart palpitations they send you to the cardiologist, who isn’t communicating with the pulmonologist who’s looking at your lungs, who isn’t communicating the GI doc managing your esophagitis, etc etc. And God forbid you don’t have the proper pedigree or papers to PROVE to these people you have the disease, even though it is obvious you could have nothing else. Papers, please! If you don’t have them, out you go to die at home, and best of luck to you. They are far more likely to consider you an alarmist or hypochondriac than to believe you, especially if you are a woman. If I were those things, why have I been to the ER more times in the past three months than in my entire life before that? Why have I lost 22 pounds in 80 days? Why are my eyes this color of red? They don’t care. They don’t want to know. They don’t have any interest in helping you to figure it out.

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