Help Emily Survive Long Covid

The short version: I'm an abolitionist social worker, s-x worker, + co-owner of radical queer community co-op bookstore + community space Bluestockings but became suddenly and severely disabled by something that appears to be Long Covid. I'm struggling with crappy insurance to get a diagnosis and proper treatment and in the meantime I need help covering my basic expenses.

The long version: Almost one month ago, over the span of about a week, I went from mostly physically healthy to experiencing extreme fatigue, brain fog, and tachycardia. Since October 20th the symptoms have become too severe for me to be able to work. Prior to this time, I worked an average of 50 hours per week in three jobs: my part-time role at Bluestockings, where I assisted in the not-exactly-post-pandemic restructuring of the beloved community space + coordinated the zines + mutual aid, as well as remote consultant work in social policy, and the rest of the time as a dominatrix. I obviously didn't have benefits, and my health insurance is through the marketplace— a $400/mo silver plan (this is after the tax subsidy) that very few providers accept. It was the best one I could afford, but it's bad enough that I've been unable to find a single outpatient therapist who accepts it to help manage my C-PTSD, Bipolar II, and ADHD, which has been a struggle. My plan was to transition to full-time work somewhere with benefits in the new year, and I'd begun applying to jobs— and then I woke up one day about one month ago barely able to move or think.

It's taken me nearly a month of going to clinics and urgent care to find out anything useful: I'm negative for active infections, but I'm positive for anti-nuclear antibodies, which likely indicates an autoimmune issue. My best guess is Long Covid/ ME/CFS and/or POTS, but these are diagnoses of exclusion, which means I need to be tested for many other things first— multiple sclerosis is another possibility. Unfortunately, because of my terrifically inadequate health insurance, the soonest neurology appointment I can get is in April. I'm currently fighting to be seen sooner. Most of my days are spent making phone calls to insurance and various doctors' offices and waiting for test results and going to appointments.

On good days— which are maybe 2 out of every 7 in no particular order I can determine— I feel almost normal. The rest of the time I have fatigue so severe my limbs feel like lead. I can manage to do one chore like vacuuming or washing a few dishes before my heart rate shoots up to 130 bpm and I become too lightheaded to stand. I have maybe 2 hours of sustained mental focus before brain fog makes it hard to follow sentences when reading or remember words when speaking or writing for more than a few sentences at a time. I've gone on (unpaid) leave from Bluestockings, and my amazing comrades are doing their damndest to pick up my work. I manage about 5-6 hours of consultant work per week when my brain is functional. I've tried to continue as a dominatrix, but the post-exertional malaise from that very moderate amount of physical activity leaves me mostly bedbound + unable to think 12-48 hours afterwards for about two days. It's also become harder to convince clients everything is fine when I frequently have to sit down and sometimes forget what I'm saying in the middle of saying it.

The actual cash in my bank account will run out in about 2 weeks, and then I'll be living on a small EIDL loan from 2020 that I have to start paying back in January (adult businesses weren't eligible for the forgivable PPP loans) and credit cards. When this started I had about $1.2k in credit card debt and $1k in tax debt I'd been steadily paying off and was set to be done with by year's end— until I began charging all my co-pays. Come January I'll also have to start repaying my remaining $23k of student loan debt. If I take on any more debt, it will become unmanageable. I have no meaningful relationship with family. I'm not eligible for any public assistance that I can find (although I haven't had access to a medical social worker and am trying to get connected to one). Friends and community have been my main supports, and so I'm turning to you now to ask for help until I'm able to figure out what's wrong with me, get appropriate treatment, and hopefully return to some kind of work.

I wanted to wait until I had a better idea of what might be wrong and what the treatment process might entail before asking for help, but I can't wait much longer, so I'm going to take it one month at a time. $4,000 will cover approximately one month of my typical expenses plus some of my co-pays and other medical-related expenses like car rides to the doctor. If by some miracle I'm back to almost-normal before I go through the money, I pledge to donate anything remaining to Body Politic, a patient-led grassroots org mobilizing around Long Covid that is in dire need of donor support.