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Chandra Pasma Profile picture
@ChandraPasma
Jul 13, 2020 • 4 tweets • 2 min read • Read on X
Update Day 120: Things are continuing to move in the right direction. My husband & I both had a relapse last weekend, but our progress is still evident. M. had one day of extreme fatigue and that was it. #Covid19 #CovidLonghaul #ApresJ120 #longhaul
I had a couple days of pleural pain, and even then it was relatively minor and only when walking or moving too much. I got a couple skin sores, but they have been tiny and did not get infected. And that was it; no full body aches, no hugely swollen glands. A bit more fatigue....
but still able to move every day and now up to an average of 5,000 steps a day. Kid 1 has had a blocked lymph node for 4 straight weeks and is a bit more sneezy than usual, but otherwise fine. Kid 2 has some days of real fatigue but mostly seems back to himself again.
And while we wait for Kid 3's respirologist appt, our doc has prescribed a flovent puffer, which is making a real difference. Meanwhile, we have been joking for weeks about how the virus has made her deaf, and well, it turns out that is a real thing: medium.com/microbial-inst…

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More from @ChandraPasma

Chandra Pasma Profile picture
Oct 4, 2020
I’m concerned about the growing tendency in some circles to equate #LongCovid with #MEcfs. I think this is bad for both #Longhaulers and ppl living with ME/CFS. A thread. 👇
2. Before I start, let me be clear this is not a swipe at the #MEcfs community which has been hugely supportive of #Longhaulers, sharing tips & resources & lots of moral support. I am very grateful for that support.
3. Nor is this to deny the reality that some #Longhaulers have developed or are on track to develop #MEcfs. We know from the first SARS that this could end up being a significant number of #COVID patients.
Read 26 tweets
Chandra Pasma Profile picture
Sep 21, 2020
1. This is a thread for my fellow #Longhaulers who are about to lose access to the #CERB on Saturday. I know some are quite worried about financial supports so this is a look at your options. As you'll see, it's quite a dog's breakfast. #COVID19 #LongCOVID #ApresJ180 #cdnpoli
2. The first stop is Employment Insurance Sickness Benefits. #EI eligibility was frozen in March, so if you were employed or self-employed but paying premiums and had accumulated enough hours for eligibility, you will now transition to EI sickness benefits.
3. It's not clear yet whether a medical note will be required if your illness is due to COVID-19. If it is, it can be signed by a doctor, psychologist, or chiropractor. You do not need a diagnosis to get a note (although you do need a sympathetic health care provider).
Read 17 tweets
Chandra Pasma Profile picture
Sep 16, 2020
Update Day 184: The Six Monthiversary of my onset of symptoms.

I'm happy to report that three of us are asymptomatic and Kid 3's cough is so sporadic that she's nearly asymptomatic.

#COVID19 #Longhaulers #LongCovid #ApresJ180 #CovidandKids
I will probably use asymptomatic for a long while rather than recovered, because as we've seen before, being symptom-free now doesn't mean they won't come back. I also remain paranoid about things like rashes & hugely swollen bug bites, although there's no reason to believe...
they're related to Covid. It will just take a while for the anxiety reflex to go away.

As for me, I'm having a really good week, including lengthy periods of the day where I have no symptoms at all and others where my only symptom is tinnitus.
Read 7 tweets
Chandra Pasma Profile picture
Sep 11, 2020
Journalists frequently ask me if my family is pursuing antibody testing to prove we had COVID. Draw up a chair and let me tell you why that question is so problematic.
#Longhaulers #LongCOVID #ApresJ150 #CovidAntibodies
2. A negative antibody test doesn’t necessarily mean you don’t have antibodies and it certainly doesn't mean you didn't have COVID. First of all, the accuracy of C19 antibody tests has been questioned by the CDC and others. Some C19 antibody tests have a high false negative rate.
3. For instance, some of the tests authorized by the FDA have a sensitivity rate under 90% - which means if 100 ppl are tested, 10 or more will be told they don’t have antibodies when they actually do. And that’s the rate reported by the manufacturer, not the rate in actual use.
Read 20 tweets
Chandra Pasma Profile picture
Aug 28, 2020
I spoke to @maywarren11 of the @TorontoStar about the need for better research and care for Cdn #Longhaulers. One of the most fascinating nuggets in this piece is the difficulty that the CANCOV study has had finding participants:
thestar.com/news/canada/20…
I'm part of three different forums with Cdn #Longhaulers, two of which have thousands of members. We all shared the information on the study as soon as we learned of it - and then we all shared the massive disappointment of discovering we could not participate.
Canada's massive screwup on testing back in the early days of the pandemic is still having an effect now on patients' ability to access medical care, sick leave and disability supports, and now its delaying the research into our condition.
Read 4 tweets
Chandra Pasma Profile picture
Aug 13, 2020
Update Day 150 (!!!!): This one's a bit of a mixed bag. Let me start with the good news. My husband and Kid 2 are asymptomatic and have been for a couple of weeks. Kid 2's energy is back and then some.
#COVID19 #CovidLonghaul #LongHauler #ApresJ120 #CovidandKids
Kid 1's only symptom is a swollen lymph node in her chest that has been stubbornly hanging on for weeks now. We took her to the osteo yesterday and by working on her neck and shoulder, the osteo managed to bring it down in size, but the bump still bothering Kid 1.
Kid 3 got a steroid inhaler four weeks ago. After a week of using it, she had 8 blissful cough-free days. Then the cough came back. We now seem to be in a holding pattern, with 2-3 days of coughing, followed by 2-3 days without. Still waiting on the respirologist.
Read 7 tweets

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