Pandemic responses

I think where most people are now is after the initial shock and adrenaline rush has subsided and are in that frustrating place where they feel fine and that conflicts with the known risks of catching and spreading this particular virus.

And I want to say yes, that is a really difficult place to be. It really is. And it’s very difficult to feel like you should be doing more, much more, in fact everything.

I live with the stress and the risk and really importantly the ramifications of a couple of really unfortunate mix of risks that might never have merged at any other time in my life.

I’m home bound most of the time. Getting places is extremely risky for both catching viruses from other people and for causing a physical stress that sets of inflammation.

I have developed a lot of mental health practices to deal with the stress of that including having a never ending interest in niche and popular topics. I switch between my fandoms and my historic studies frequently.

I don’t get bored, because I just can’t stop thinking about what people have thought about. So while most of what I share is The Frocks, it’s an expression of a much wider scope of reading to find the frocks. And that has lead to collecting works of fiction, essays, catalogues,… and I will never finish reading or exploring what I am interested in.

So much of that relies on open access as I simply cannot afford all the books I would love to own. And that is also why I keep my site simple and as open as possible.

But more on risk and how it doesn’t feel like a risk.. except with past experience.

I am not sure how well I could recover if I get COVID 19. It’s not well known at all for patients with Rheumatoid Arthrtitis. One of the reasons is probably due to many of us self isolating, or practicing physical distancing long before any public calls because we are already at risk of secondary infections from the flu, and probably many of us have experienced those nasty flu strains over the last few years. So we might be lowering our rates through behaviour.

I have been trying to get the very best information I can about any risk, and it is very difficult. RA is an autoimmune disorder, and it’s not just about my joints but it affects anywhere that has synovium. So that includes my heart, so that might put me at risk for the cardio vascular stuff, and my lungs which probably increases my risk of the pulmonary stuff.

In both those cases I feel fine most days because I limit my risk of triggering an inflammatory response. My cough is here but so long as I don’t exert myself it is controllable.

But the virus doesn’t care if I feel fine, I still have risks.

So the other risk factor for me might be that cytokine storm. Most people with Rheumatoid Arthritis probably don’t have to worry. Yes our “flares” are inflammatory and thus have a cytokine response, but generally it’s a much more limited response:

It’s important for autoimmune patients to know that s cytokine storm is not the same thing as a disease flare.
During a flare there is certainly too much pro-inflammatory immune activity, but it only goes so far.

But here is where it gets a bit tricky:

Some autoimmune patients end up with cytokine storms (unrelated to COVID-19). This is most apt to occur in children with juvenile idiopathic arthritis (JIA). “About 10 percent of patients with JIA will experience it; in some cases, multiple times,” says Dr. Cron. Adults with lupus, Still disease, and other inflammatory/autoimmune conditions may also develop a cytokine storm.

I am really not sure what I went through in my first few years and initial trigger event, and without any suitable therapy except a reliance on cortico-steroids. But it was not the usual onset and I can pinpoint the day I triggered it. I was in full body inflammation within days.

On the one hand, in fact, the potential role of external microorganisms in producing acute and chronic arthritis in the form of either the direct colonization of the joints by the pathogen or the aberrant autoimmune reaction produced by the host response to the infection is well known.

My initial onset was classic in this regard, I had an infection but it switched so quickly to RA onset that I am not sure if it was flu or a bad cold- and colds are a mix of many viruses including many of the caronavirus family.

I slipped while trying to climb a fence to open the back door so I wouldn’t wake anyone, I had the back door key but not the front door. It was midnight and there was work the next morning. I had both hands hooked over (about top of my head high) and only swung from about waist high into the fence.

So it was very strange to go from being the most active and happy than I had ever been, to being on high doses of steroids with massive solid swellings on the back of both wrists, my knees, my jaw, and it happened so fast my physio said it’s not at all normal and I needed to have blood tests.

I went from barely elevated levels of Rf (38) to a very definite positive at 118 within 6 weeks. We stopped testing when it reached 1080 in a few months after that.

On the other hand, RA patients carry a documented increased risk of infection compared with the general population.

This means I have had multiple long term infections pretty consistently. So all of that history of tackling sever inflammation (with corticosteroids) with secondary infections (and potential loss of effectiveness of antibiotics) and I am sitting her feeling fine but with enough experience to know that it doesn’t matter. My risks of catching and having potentially severe symptoms and most likely a secondary infection is high.. and it is tough.

It’s tough because I am doing everything I can to reduce that risk.. but I have also had swingwingly bad luck with that combo of trauma and bug twice now. My RA onset and more recently my broken rib.

I’m aware luck doesn’t work like that usually, but we are talking about health risks that relate to two fairly low risk incidents.

I broke my rib in a very similar manner in that I just leaned over a chair so it was a mix of really bad luck with the chair right in that perfect place and possible low bone density from my past history of disease and treatment. Then I got that spectacularly nasty strain of flu and my permanent cough and some chest pain.

So for me low risk is not really low risk and I practice everything I can when I can while I can.

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