I’m not sure why I didn’t realize it until I got home, but my cognitive function during this last week of my hospital stay was *significantly* better than it has been since summer 2020… (With the exception of the one night immediately after a 500 mg steroid pulse.)
It took up 90% of my focus and energy, but I did a deep dive into learning about acute phase reactants in hopes of finding potential inflammatory biomarker candidates for RP. At first I was just skimming RP articles, which I do whenever I’m able to. But then I got molecular…
Now I’ll confess here that I took chemistry at the local community college after some bad university math experiences. So although I have a ridiculous amount of medical knowledge, I really don’t have the chem background for this. So I was reading from scratch.
Somehow in the last week I developed a good enough working understanding of the major acute phase reactants (except the complement proteins 😩) to understand how they relate to each other, & to be able to make predictions regarding & to form hypotheses for my rare disease.
When he was discharging me today, my doctor joked that I was ready for a second PhD in all this.
In a week I learned enough to be able to have empirically-grounded & sensible conversations with my doctor about it—which he confessed was fun for him being outside his wheelhouse.
In a week I learned enough to be able to have empirically-grounded & sensible conversations with my doctor about it—which he confessed was fun for him being outside his wheelhouse.
I’m not meaning to brag—this is me *marvelling.* I was really worried I’d lost the ability to rapidly learn & synthesize information like this. Because if I’m honest about it, I was still struggling in the summer of 2020—I really only made my brain work w/reckless prednisone use.
The last time I could do this kind of thing organically was early in 2016. Because that summer my health began deteriorating and I started having serious issues with brain fog.
But I’m actually on my lowest immune suppression since early 2021…
But I’m actually on my lowest immune suppression since early 2021…
I’ve noticed my cognitive function improve during past hospital stays, but nowhere near to this extent.
And you know what the only difference I can identify is? This time when they put me on enoxaparin, they didn’t stop my low-dose aspirin…
And you know what the only difference I can identify is? This time when they put me on enoxaparin, they didn’t stop my low-dose aspirin…
So I was on an anticoagulant *and* an anti-platelet agent for the first time in my life.
Which by the way really adds fuel to my growing belief that my autoimmune disease may be causing some kind of coagulopathy and/or endothelial damage…
Which by the way really adds fuel to my growing belief that my autoimmune disease may be causing some kind of coagulopathy and/or endothelial damage…
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