I am so so sorry to hear of your terrible experience Erin. And everyone's too. My heart goes out to all of you.
But there is something so terrifying about head, neck and throat being involved. I have sfn, it seems to have gotten into my tongue and neck, and I am utterly terrified of going ahead with the vaccination which is scheduled for tomorrow (they cancelled an appt. last year). I have been to 4 doctors to try and get sensible discussion, and I have trained as a paramedic so not uninformed. But nobody listens. So I am debating whether to risk exacerbating what seems to not be abating or risk covid. It is doing my head in. Utterly terrified. Because if my tongue worsens it could be potentially very bad.
People like us don't fit into anyone's schema for proper risk assessment so we get ignored.
You are 150% right Erin- there needs to be screening that goes beyond the basic which is for an allergic reaction. This is such a dire situation.
I hope things settle down for you. I'm sending heartfelt wishes for peace and healing.
Thank you for sharing and for speaking up.