Chandra Pasma Profile picture
Aug 13, 2020 7 tweets 3 min read Read on X
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.
So this makes me the bad news. I was doing pretty well, more physically active, mostly symptom-free, but then after a busier than usual August long weekend, I relapsed pretty hard last week. Suddenly, any physical exertion more strenuous than walking from one room to the next
gave me severe chest pain. I got three big blisters on my legs, and one of them turned into a very deep abscess. So Monday, I had to go to the hospital to get it lanced and drained. (Shoutout to the staff of the @QCHOttawa who gave great care!)
Now I have added dermatologist to the list of specialists I am waiting to see. I'm recovering from the relapse but still dealing with lots of fatigue. Last Wednesday I walked 8,000 steps - today I hobbled painfully to the mailbox and back. Baby steps!
There is still a silver lining here - no swollen glands, no full body aches, no runny nose. So even though it was a relapse, I am still seeing fewer symptoms. And I know that resting and pacing my energy will help my recovery. So back to resting 'til it hurts.

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More from @ChandraPasma

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
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
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
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
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
Aug 10, 2020
It's important that the conversation about re-opening schools and the plan to do so be based on actual facts, not magical thinking. The reality is that kids CAN get sick; kids DO get sick; and some kids get SERIOUSLY sick or remain sick for a LONG TIME. ctvnews.ca/health/parents…
In that respect, the comments of Dr. Anna Banerji in this article are deeply disappointing, verging on irresponsible. She says cases of kids with chronic symptoms are extremely rare. How does she know? What data is she pointing to? What surveys or tests have been done?
I remember back at the beginning of July when I did a radio interview & the doc who followed me on air also said that the vast majority of ppl who got COVID-19 recover in two weeks or less and that this issue of chronic symptoms was not really an issue.
Read 7 tweets

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