covid-19

My Covid-19 Story

I’ve been out sick for quite some time. And to be transparent, it may take me a few days to actually write this blog post as I am still sick. I’m getting dizzy already and I’m only a few sentences in. But I believe firmly in open and transparent dialogue, and I’ve been wanting to share my side of all this for some time now.

On Wednesday, April 29th, I began experiencing trouble breathing. I have asthma and suffer from seasonal allergies (snow mould, grass, trees – and yes, I know, someone who loves field work is allergic to everything in the field) but both are generally under control. I haven’t had an asthma attack that wasn’t cat related in over a decade, and my seasonal allergies generally make themselves known via a runny nose before anything more serious giving me time to take precautions. And both are well in hand utilizing a ridiculously low dose of THC (we are talking in the 1.7 mg range).

When it began, I took my medication, but it had no impact. Still… even though it felt off somehow, I thought potentially it’s just a bad allergy season. This persisted for several days, and the sneaking suspicion that something more may be happening snuck in through my usual cautious optimistic attitude. As someone who is immunocompromised and with a higher risk of infection I have been exceedingly careful since the pandemic was declared, but no precaution is 100%. And I knew if anyone in my circle was to get sick, it would likely be me… it’s always me. It’s something I’ve gotten used to.

By Sunday, May 3, things had advanced. I was no longer experiencing what could be passed off as asthma or respiratory allergy symptoms, and I knew it was time to reach out for help. My symptoms now included: the original asthma-like shortness of breath, intense sweats, absolute exhaustion, lightheadedness, a cough (but not like a cold, like you can’t breathe and something is catching in your lungs), headaches, sore throat, and an inability to catch my breath even when seated. My breathing had become so laboured and fast that my heart rate was elevated as if I had just been engaging in intense cardio. I called 811 (the health-line) that afternoon after completing the SK government online c19 pre-screening questionnaire.

A screenshot from the online coronavirus self-assessment/self-screening quiz.

I spoke with two different nurses. The first felt inadequately prepared to deal with my presentation, so transferred me to the senior RN on shift. Rei (or Rey, or Ray, I do’t know how it was spelled) was fantastic. She was a compassionate listener. While she was concerned, she respected that I knew my body better than someone I was on the phone with for a few minutes, and trusted that if I had been in danger I would get to the emergency room. She let me know that that is the official recommendation, but she knew I was lucid and not alone. So she made a referral to the C19 testing centre in Saskatoon with the insistence that I also get a full assessment vs just going in for the swab. It was a reasonable compromise. She expected I would get a call that day, or possibly on Monday. I thanked her, and we ended our call.

By the next day (Star Wars Day, May the Forth) my symptoms had again expanded. Added to the list were: chills, dizziness, intermittent nausea, and occasional chest pain. I had not yet received a call from the testing centre.

Two more days passed and it was now Wednesday (Return of the Sixth). I had been experiencing symptoms for a week, and been extremely symptomatic, incapacitated and in bed, for four days. I now had intense body aches which I knew were greater than my typical Fibromyalgia related pain. Still no call.

I began to be concerned that something had gone wrong with my referral. After all, things happen sometimes. And if it was a matter that they were extremely backed up, I would keep waiting… but I wanted to be sure the testing centre did have my referral as I was in very poor condition by this point. My breathing was so bad, that talking above a forced whisper had me hacking uncontrollably.

Sherry was the first nurse I spoke to on May 6th. She treated me like I was an idiot, and said that if I wasn’t willing to go to the emergency room she couldn’t help me further. All I wanted to know was the status of my referral. I knew I was safe in bed at home, and had no intention of putting further strain on an already overburdened health system. I didn’t need to use up resources that I knew others required. Yes, I was doing poorly, but I wasn’t an intensive care need. Sheri (utilizing a different spelling this time, I know) insisted on transferring me to a second RN.

Diana (or maybe Diane?) received my transferred call and was just as bad. And it turned out that I hadn’t just been transferred, I had been transferred out of the c19 call centre.

I tried explaining, again, that I just wanted to be sure that my referral had been received by the testing unit. That I was safe at home. That yes, I was aware my symptoms were bad, but that yes I am capable of managing them at home and did not require an ambulance. Diana repeatedly insisted that I needed to call 911 and that she couldn’t help me if I was unwilling to do so. I thanked her for her time, insisting yet again that I did not need to take up resources I didn’t need, that yes, if my symptomatology advanced and warranted emergency care that I would arrange to go to the emergency room. And she again repeated that she can’t help me if I won’t call 911, and insisted that I hang up and call for an ambulance.

Me, sick, leaning back in bed, obviously annoyed but clearly not in an emergency situation. Putzing around on my iPad, the only thing I could do that didn’t contribute to the dizziness, nausea, or difficulty breathing.

I had been watching a live broadcast from the legislature building about the province and the governments response to the emerging situation in regards to the pandemic… and I commented in regards to the lack of testing possibly having an impact on the low numbers being reported in the central and lower half of the province. CBC reached out to me about my experience and in spite of my raspy laboured speech, I did an audio interview which led to multiple stories online, tv, and radio.

A portion of a resulting conversation with someone who saw my comment about the lack of testing and the unacceptable wait times in the province in terms of covid-19 testing, offering suggestions on how to address the issue.

On Thursday, I called our family doctor to request help getting in for testing, and ANOTHER referral was made. I also made the decision that if I didn’t hear back by the end of the day that I would go to the emergency room. Thankfully I received a call that evening and received an appointment for Friday afternoon; 2:00, May 8th.

Me, feeling like trash, but in the car FINALLY on the way to the testing centre.

Saturday the 9th my symptoms again worsened to include: a gummy, mucus-filled feeling in my throat, nose running, ears feeling full and popping occasionally.

Monday, May 11th, my breathing and coughing improved slightly. I received a call from our family doctor that morning saying the test swab came back negative.

This week (it is now one week later, Monday May 18th) and my breathing has been steadily improving this last week. However the majority of my other symptoms are still present to various degrees. I will begin thinking things are improving in one area, and then the next day they get worse again. I tried to venture out into the yard for some sun a couple days ago, and got so dizzy I almost passed out.

I was lucky, that because of the news coverage involved with my Covid-story, I received a phone call from the director of the testing centre (I believe she said her name was Emily) who admitted that if CBC hadn’t taken up my story they never would have looked into what happened. My initial referral had been received, but had been overlooked and apparently mishandled, and the reason I had agreed to the media interview was because I knew if this was happening to me that it was happening to others. Thankfully the centre has now implemented a larger system of checks and balances to their receiving system to help prevent any further referral losses.

I also received a call from a representative of the Saskatchewan Health Authority, again thanks to the media presence around my case. I was able to talk to them about the possibility of bringing in antibody testing as a routine procedure for procuring accurate covid case numbers. In my conversations with many folx during this experience I have come to realize that the percentage of false negatives with the current swab test are unacceptable.

Truly, every person who receives a negative swab result should be sent for repeat testing. And then, in order to help our country move forward as safely as possible with as much information for the members of the science community working on this novel virus, every person who has been tested should have the blood test (for antibodies) done about three weeks after their symptoms have disappeared. This would give us a much better handle on what is actually going on and give us a real shot of moving forward in as safe a manner as possible. The rep for the SHA has said they will look into the idea of bringing in antibody testing. They were aware of it, but hadn’t looked into the possibility of utilizing it on a widespread basis in SK. So here’s hoping it wasn’t just talk!

I’m still sick in bed. Unable to read, write, draw, crochet… unable to do many of the things that make me feel most authentically myself – including being outside – without getting dizzy. And the sweats and chills are horrible, as is the cloudy, foggy-headedness. But I am improving.

I am still percolating all sorts of ideas and plans and ways forward for my thesis and for my PhD hopes once I’ve completed my Master’s degree. For now though, in spite of still having much to say and share, I’m afraid I have to log off. This represents more days work than I care to admit, and I’m still feeling lightheaded whenever I sit to try and write… but it was important. And hopefully it won’t be too many more days until the remaining symptoms begin dissipating.

If you are still with me, as I know this was a long read, I hope it is mostly coherent and understandable. My writing is uncharacteristically laboured just now, and I know its likely lacking flow and a fluid through-line. I felt it was important to put it out there, just the same.

The two written articles from CBC, which I know made it to their online reporting system, can be found here: https://www.cbc.ca/news/canada/saskatoon/saskatoon-covid-19-testing-residents-report-delays-1.5562517 and https://www.cbc.ca/news/canada/saskatoon/sha-amends-testing-process-after-complaints-delays-1.5567024

It felt awkward to me having the stories centring on me, as I don’t feel I was the story. My experience was truly just a way to bring light to the actual story, which was the mishandling of referrals by the testing centre, the lack of testing, and the potentially misleading numbers being reported by the province due to the aforementioned issues. It was never about me, it was always about preventing this mistreatment from occurring to anyone else.

I’m glad the CBC was able to force some accountability, but it is atrocious knowing neither the health authority or the testing centre would have addressed the issues present without the media pressure – and both admitted that was the case.

2 thoughts on “My Covid-19 Story”

  1. Hi!!! (from Moose Jaw)
    I saw your post on the snail forum a few days ago and have been wanting to reach out but….covid? I just joined the form and posted in the newbie intro area just so I could meet you. (not creepy at all…right?) I just read a bit on your blog and found we have a few things in common other than snails)

    First I hope your health is improving. My partner started having a wet cough 2 months ago but he was certain it was a cold…then allergies…then a wheeze. This is what he did for 2 months before having a massive heart attack. What could go wrong?😬
    When I could hear the wheeze over the tv I got on his ass to call the doctor. He was in the assessment centre 2 hours later and 2 days later got negative results. I’m sorry you had such difficulty but I really appreciate your advocating for yourself and the public. After a lot of tests and trying different inhalers & meds they think he has asthma on top of COPD but it could be blood clot but the respiratory clinic is covid closed so we just monitor. After reading your story about false negatives I’m going to bring it up when we talked to the doctor on Monday. Thank you!
    I really enjoyed your About story as well. I was diagnosed with fibromyalgia in my thirties and recently autonomic neuropathy so I can relate to all the uncertainty that creates in our lives.
    Snails! (Bugs! Insects!) They have always been therapy for me. It’s a delight to find someone else provincially who enjoys these whimsical little creatures.
    I raise local microsnails. There is little documentation on raising micro leaf litter snails and they do have different needs and traits from the larger snails. It’s been trial and error. Most of what I find is too scientific to understand. I was happy to see your desire to improve communication and understanding for us sadly non-geek-speakers!
    I’ve been concerned with the large amounts of dead snails I’m finding on the shores of ponds & lakes. It’s been astounding and disturbing. I think it’s caused by farm chemical in ground water…?
    It’s affected me so much that 2years ago I had an environmental art exhibition titled Analogies in Green. Each piece had snail shells as the focus of each of the needle felted dryads. It was a way to show how overlooked and important they are to the environment. (Also people were getting leery about my other approach to the subject…”Hey! Wanna know what’s under my leaves?”

    I hope you are feeling better and will post again when you can. Meanwhile I’m reading your blog front to back. 😊
    -Jean

    Liked by 1 person

    1. Hey Jean! Great to hear from you, and I am so glad the news coverage prompted you both to actually get some help and some answers. Snails are awesome! I might have to share some videos of mine here at some point… and YES! Farm chemicals are a HUGE issue for our waterways and all those who rely on them. The SK River is essentially a “dead river” after so many years of mismanagement by individuals, corporations, and the government. Knowing how hard many scientists fought (including one of my former professors) for any kind of acknowledgement of what was going on decades ago now, it is incredibly disheartening that there is still little to no action being taken to protect what little is still recoverable. If you ever feel like doing more, maybe we can actually work together on something (counts of dead animals found in certain areas over a determined frame work can be publishable and I would be more than happy to do what I could to facilitate that kind of work). I would also love to see some of your pieces from the Analogies in Green show – which actually sounds vaguely familiar to me. Feel free to connect on FB! And seriously, thanks for reaching out!

      Like

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