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.
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.
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.
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.
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.