this has taken me many hours today

Last night I had a horrible reaction to Flagyl, an antibiotic my GI doctor prescribed me for SIBO. I had started it on Thursday and was feeling pretty lousy on it ever since, but it was something I figured I could just deal with until last night. 

I can’t remember the last time I’ve felt that horrible. I had the worst headache of my life and I felt nauseous, fatigued and foggy. I actually wound up vomiting twice, and I never vomit. I was freaking out. I called the on-call doctor and she told me that those symptoms were in line with what can be expected from Flagyl, but advised me to come off of it right away anyway. I had Ryan check the internet (because I knew checking it myself would stress me out even more) and he confirmed that there were many people who had taken Flagyl and said they felt like they had been “poisoned.” That’s the perfect way to describe how I felt. 

This now makes two antibiotics I can’t take, amoxicillin being the other one. I took amoxicillin once and was up all night with the worst stomach cramping I’ve ever had. My body is the worst. 

I’ve been trying to take it easy today, drinking lots of water. Flagyl has a half-life of 8 hours, which is pretty short, but everything I’ve seen says it can take up to 48 hours to completely exit the system. I just want it out of me. 

Loud Crashing Noises

Rin seen throwing tools around the shop in a fit.

“STUPID…FREAKING…JUNK…. WORK!!! JUST WORK ALREADY!! AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA”

Authors note: Rin has been locked in her lab all day, with a huge passion to work and get stuff done, only to be thwarted time and time again and ultimately spending many hours on a project that should have only taken a mere hour or two.

Authors note ++: Please do not go into the lab right now, there’s a woman on a rampage.

THE HIV WELFARE MERRY-GO-ROUND: A DAY IN THE LIFE

Lord, lord, lord. I came precariously close to disaster in the last 48 hours.

On Tuesday, I got a call from my government case worker, saying she wanted to do a home visit. I immediately knew what it was about. When she showed up the next day, the first words out of her mouth were, “You’ve been bad. If you don’t comply with Social Security, we will close your case in ten days.”

“Closing my case” would leave me homeless, without food or HIV drugs, and probably dead within a year.

As I have previously mentioned on this blog, I am enrolled in a program called HASA. “HASA” stands for New York City’s HIV/AIDS Services Administration, and it is a division of New York City’s Human Resources Administration, known as HRA, or more commonly, “the welfare office.”

HASA provides you with a standard of living which is well below the poverty line. It allocates you with a few basic things: often sub-par health care, food stamps, a very modest cash grant each month (very modest — so you can buy, like, toothpaste and toilet paper), and a small shelter stipend.

Most people who receive that shelter stipend live in SROs, which are single-room-occupancy dwellings, or, more colloquially, “group homes.” These are not nice places. There is very little state oversight for disability housing. Violence, vermin, intimidation and abuse are quite common.

Here’s the thing: HASA is a municipal program, run by the city of New York. Of course, this costs money (not that much money in the grand scheme of things, but that’s a whole other post). HRA would much rather foist off its clients (or, as we’re referred to, “consumers”) to the federal government.

Thus, every HASA client is required by law to apply for Social Security Insurance/Social Security Disability Insurance (or SSI/SSDI). These are national programs that provide, basically, the shittiest social safety net for some of the most vulnerable people in the US: the elderly, the disabled, and poor kids.

The problem with SSI/SSDI is that it’s almost impossible to qualify for unless you’re over 65 (and even that may change soon.) To be considered “disabled” by Social Security, you more-or-less have to be blind and deaf and have no arms or legs or something. Only a tiny fraction of the people who apply are accepted to the program.

(Caveat: the above statement is circumstantially hyperbolic. There is a way to qualify for SSI/SSDI, and that is to get a good lawyer to handle your case. And, surprisingly, the lawyers that advertise on daytime television during Judge Judy do an exceptionally good job at winning these cases.)

So, I have to apply for SSDI. I will not get accepted for SSDI. I know this, my case worker knows this, and HRA knows this. But I am required to act *as if* it is a possibility that I will be accepted.

The process of applying for SSDI is pretty humiliating. You schedule an interview, wait for two months, and go in and talk to a stranger about your entire life history and all your problems. Then, you have to get your doctor to fill out a medical report confirming your medical problems (this in and of itself is difficult, as I see a public health physician who has 600 patients.)

Then, you are required to be examined by two creepy state-appointed doctors, which (speaking particularly as a transgender person who is shy about strangers touching and seeing my body), is really ramps up that “humiliating” factor.

Then, you will receive a decision letter from SSDI. You will be inevitably denied. Then you have to file an appeal, and appear in front of a judge (*another* incredibly anxiety-producing experience, especially for people who have been formerly incarcerated, had bad experiences with family court, who have outstanding warrants, you name it — and these folks, perhaps not unsurprisingly, make up a large chunk of people living with HIV in the US).

Then, the judge will take one look at you, and will reject your case. This entire process, of course, is big waste of many, many people’s time.

But you know what’s the most cynical, depraved part of the whole cycle? Once you are denied, you have to start the process all over again. Because somehow, they magically hope that you will get approved next time? In fact, the city is kind of hoping that your health will deteriorate to the point where they can kick you out of their programs and make you the federal government’s problem.

HERE IS THE KICKER, THOUGH: EVERYBODY KNOWS THIS ENTIRE PROCESS IS A COMPLETE JOKE. Even my worker says, look, it’s just a game, and you gotta play the game. It’s two warring, bizarre, Kafka-esque systems fighting over pennies for poor people.

Lately, they’ve been cracking down on people who haven’t been keeping up with this byzantine system. I had let my last appointment slide, and they flagged me in the system. I recently spoke with a public health guy who said that by making this process more rigorous, they’re hoping to kick more people off welfare. THANKS, NEW COMMUNIST MAYOR. My roommate has taken to calling Bill DiBlasio “Slick Willy,” because he reminds us so much of Bill Clinton: all promises and too many compromises with the ultra-rich — though, shrug. Only time will tell.

Fortunately, though sheer hustle, and waiting for about six hours in various government offices, I got it all straightened out. Which buys me a few more months not having to worry about, you know, terrible catastrophe.

HOWEVER, AS ALWAYS, PARTYBOTTOM ASCRIBES TO THE PHILOSOPHY OF BYOPMA: BRING YOUR OWN POSITIVE MENTAL ATTITUDE. In that spirit, I noticed something really interesting today.

These government offices are kind of gross, but there’s a silver lining. They may be dirty. They may have terrible lighting. The chairs might be uncomfortable. Sometimes fist fights break out between clients, and sometimes people with severe mental illness start screaming at the top of their lungs. But sometimes, something magical happens.

Today, when I was in the Social Security office, I was eavesdropping on a conversation between two strangers. One was giving the other advice on how to apply for food stamps. This is not the first time I’ve seen this go down — in these weird liminal spaces, total strangers who share nothing but the commonality of poverty — well, somehow we all manage to form some sense of solidarity. We make small talk. We encourage each other. We share advice about what we have learned about the system. We make sure that we are taken care of. In small, understated, undramatic ways, we show each other tiny acts of love.

And there is beauty in that.

Ok so I really don’t want to say much right now because I’m out with friends and hopefully will be for several hours. Also if I really start to think about it all I WILL start crying. And I’ve already cried a fair bit today at the show.

Suffice it to say, I just saw Darren Criss at his very best. That was remarkable, magnetic, and heartbreaking to watch. His hedwig is mercurial and complex and I love how he has taken this role in so many new directions.

Hedwig has been my welcome to New York and she has helped me settle in so nicely. Thank you to everyone who has been a part of this adventure and thank you to Darren and Rebecca and all of them.

And remember, every time Darren Criss does anything we think he’s peaked, we think it’s the most amazing thing ever (and it is). So god knows all the fantastic stuff we have coming next! But for now, let’s all just bask in the three months we’ve had together. Because they’ve been pretty freaking wonderful!