Many people have been asking me about Actemra (tocilizumab) given that I started a monthly dosing regimen of it a few months ago. Below you’ll find some common questions I’ve been fielding.
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I’m walking down the street of a major American metropolis, bagel in hand, rushing to find a park bench so I can log in to Zoom. I look down at my feet, pause, and whip out my phone.
Perfect. This will do. *shutter click*
Leave it to a patch of dingy city sidewalk to embody my feelings of living with an inflamed brain.
Autoimmune encephalitis (AE) is a nightmare.
Internists don’t want to touch it. Psychiatrists look on with sympathy. And most neurologists would rather not acknowledge it at all, unless scores of paraclinical investigations are screaming in their face.
So you might begin to imagine how dejecting it feels to be the one actually living with this illness.
Each month usually has a general direction or theme that I can speak to; not so much April, however. It’s been a month of everything: healing, setback, haze, peace, struggle, stress, and growth. I’m not making a beeline from A to B, that’s for sure.
Despite the detours and the weird place I find myself today, I do have faith that I’m slowly making it through to where I want to be.
The plane lifts. Like many traveling for the first time since the pandemic began, anxious feelings churn beneath my calm exterior.
Is it safe to fly? Will I regret this later?
All things considered, I reaaaaaally don’t have much to complain about.
That’s one major advantage of coming out the other side of a major medical issue as a young adult: recover, and the magnitude of most life issues dramatically diminishes compared to how you might have perceived the same life issues had you never gotten sick at all.