It’s July, Alex.
Hi, it’s me. I’m not dead. Surprisingly. You may have noticed that I started getting pretty quiet in 2022. At the start, this was for a good reason–well, all the reasons have been good ones, this was for a happy reason. I was writing a book for Activision-Blizzard, and also writing an absolute butt-ton of scripts for Marvel Move (yes, that’s right, I am writing Thor and Loki). I just did not have available brain juice for anything else. This website fell by the wayside, and then I pretty much gave up on social media as Elon Musk made Twitter progressively less pleasant to be on.
I will also be frank, I was also having some mental health issues, including a bout of depression and anxiety bad enough that I finally got on SSRIs, which is what had me functional enough to do the aforementioned writing. So at least as I went into autumn of 2022, I was feeling pretty good, I was just… busy. Very busy.
Then everything changed when the fire nation attacked when I was about to get on an airplane for a nearly month-long family vacation with my best friend and niblings in Japan.
I’m about to get into some medical stuff, which always edges the line of oversharing. I think in this case, it’s stuff that’s actually important to share, because I had no fucking idea I was in serious trouble until it was very serious trouble. And as with many health-related things, it started in a way I could shrug off because I’d never heard of other people having issues like this. (For good reason, it turns out.) But I will warn you, what follows is going to involve a lot of stressful medical bullshit, and also a lot of pee.
Cue literally twelve goddamn hours before I get on an international flight. I notice that my ankles are kind of swollen, which is… weird, but not unheard of. For about the previous week, one of my ankles had been kind of puffy off and on. I chalked it up to having shitty joints and having recently eaten some very salty food, with a mental note to bring it up with my doctor post-Japan if it kept randomly happening. Go to bed. Get up. The ankles? Even more swollen. I know enough to realize this is not a great thing to have happening on a long flight, when one’s ankles might swell up to begin with. But twenty minutes from heading to the airport, I wasn’t going to call things off and pay ticket change fees so I could go to the doctor, if I could even get a same-day appointment. I bought a pair of overpriced compression socks at the airport and kept going.
I had an absolutely fucking great time in Japan. I want to be clear about that. Despite everything that was going on with my body, I still had a ton of fun and loved being there with everyone. But even as I was eating my way across Osaka or going for a boat ride in Kobe Bay, I was aware that something was Not Good. My legs kept swelling up. I ended up with what I thought was a rash all over my calves, which was concerning enough that I did a phone visit with a doctor; the best we could come up with was cortisone and time. But it looked gross enough that I didn’t end up going to an onsen at all because I wouldn’t want to share a hot pool with someone whose skin looked like mine.
(This was not a rash, it turned out. This was just my skin reacting to how much it was being stretched by the rapidly building edema.)
And my legs kept swelling. And swelling. My feet looked like balloons. The edema started creeping up, like I was a latex glove being slowly filled at a sink, first all the way to my knees, then over my knees, then halfway up my thighs. It was difficult to bend my knees if my legs had been straight for a while; if I pressed a finger against my skin it formed a deep and persistent pit in the swelling. I could tell I’d also gained a lot of weight elsewhere (which I blamed on being fat initially–it wasn’t). My joints ached. I was glad I’d brought my collapsable cane with me, because I started needing it to get around because I was so creaky. I started developing a cough, mild at first, which was non-productive even though I could feel something crackling in my lungs. The cough got bad enough that I blew out a little blood vessel in one of my eyes, which wasn’t painful, but it looked disgusting. Annoying, I thought, that once again I’d gotten a travel cold despite masking on the plane.
(It wasn’t a cold.)
With all that going on, it’s probably not a surprise that I noticed but utterly dismissed what was actually the most important factor: every time I peed, it was foamy like a fucking beer. Like persistently foamy. Huh, weird, I thought. I don’t think it’s normally like that? Probably something about the cleaning products in a different country.
I’m going to tell you right now that if you have persistently foamy pee, and it’s a weird new thing in your life you’ve just been ignoring, stop reading this blog post and make an appointment with your doctor. Right now.
Through it all, I kept telling myself that I just needed to make it through until I was back home, because I didn’t actually feel bad enough to want to go to a Japanese emergency room, where I’d have to drag my best friend’s husband there with me for who knew how many hours for what was no doubt nothing but would get me told off for being fat. (And this is what medical fatphobia does to us.) And he did offer; I simply didn’t feel bad enough to think it was necessary.
Until I was two days out from leaving for home. I split off from the group in Nagoya because they were going to spend a bit longer doing strictly family stuff in another city, and I was supposed to go spend a day in Kyoto and then my last day in Tokyo. Instead, I got sick. Like massive vomiting, diarrhea, coughing so hard I was constantly in danger of either shitting or pissing or both myself. Another blood vessel in one of my eyes blew out, a much bigger one that had half my sclera bright red like I’d been in a fight. I spent an extra day shut in my hotel room in Nagoya because I couldn’t imagine getting on a train, and just desperately hoped it would pass in 24 hours so I could get on my flight home. I thought about going to the ER; I probably would have asked if I’d still had access to a native Japanese speaker to help me. I tried to figure out if there was a way I could get a COVID test before getting on the plane, because considering the way I’ve reacted to the vaccines, I was terrified I’d finally caught COVID.
(It wasn’t COVID.)
But I did feel better after 24 hours, good enough to make it back to Tokyo and have some fun for my last evening in Japan. The flight home was fucking horrific; the edema in my legs and abdomen was so bad, I had to wedge myself into the seat and almost couldn’t buckle the seatbelt. I couldn’t stop coughing, and I couldn’t catch my breath. I wish I could send a personal apology to everyone who had to sit in the airplane’s cabin with me, along with the good news that hey at least it wasn’t anything contagious.
The minute we landed, I texted my housemate to let her know I was on the ground. And when she picked me up, I told her to take me directly to the ER. Which was the smartest thing I could have done, then.
By the time the ER got a look at me, my systolic blood pressure was over 160–which is not quite a hypertensive crisis, but heading that way, and also deeply worrying for me because I’d never had a blood pressure that high in my life. The 12-lead EKG picked up irregularities in the electrical transmission in my heart. The doctors ordered a ton of labs and then started me on furosemide (a diuretic), because they had no idea what was causing what, but it was very plain that I had a lot of extra water in my system I needed to pee off. They sent me home with strict instructions to see my primary care physician as soon as possible, or to come back to the ER if I started feeling worse.
I’m not going to go into detail about how December went for me. But over the course of a week and a half, after getting bumped up to 40 mg furosemide twice a day (that’s a lot of furosemide), I peed off over 30 pounds of extra water I’d been carrying around. That solved the blood pressure issue and the cough, even if we still had no idea why it had happened. I bounced around specialists, from pulmonary to cardiology, had a real scare with an echocardiogram that, on re-do once I was minus all that fluid turned out to be fine. And then I got referred to the nephrologist, because hoo boy, my pee was spicy**.
**Spicy here does not mean ow; there was no UTI or anything like that. We started calling it spicy because I was pissing out all of my protein in massive amounts, which is Very Bad.
Turns out I had what is called Nephrotic Syndrome, which means my kidneys were not filtering my blood properly. But what was causing it? That became the real question. It wasn’t until January, after a kidney biopsy, that there was finally an answer for what was causing my kidneys to go haywire: focal segmental glomerulosclerosis. (aka FSGS.)
So for my 42nd birthday, my body got me a rare autoimmune condition. Thanks, pal.
The good thing about having a diagnosis is, even if the diagnosis is scary (and I will not claim this one isn’t) at least there is an answer. There’s a course of treatment. There’s ways to track it and ameliorate it. And even the scary things (like the specter of dialysis and kidney failure) still mean you can start mentally preparing yourself for the worst to come to pass. You might not like where you’re going, but at least it’s not a terrifying unknown.
The treatment for FSGS turns out to be: a lot of immunosuppressants. Anyone with a chronic condition that’s autoimmune is no doubt nodding at this point, because you know what’s coming next, and it’s an absolute shitload of prednisone. I’ve been on prednisone before, but this was an amount of prednisone that involved me signing a waiver indicating I understood that it could do fun things like give me diabetes or permanently fuck up my ability to make my own cortisol. But you know what both those things (and everything else on the possible side effects list) are? Less scary than the certainty of my kidneys completely shutting down.
High dose prednisone is a wild fucking ride. I spent the first month unable to sleep for more than about three hours a night; I had energy, but it was all bad, frenetic energy of the kind of that makes it impossible to form useful thoughts. I was always hungry; I put back on most of the weight I’d lost that had been edema, this time because I was just constantly fucking ravenous and also felt so shitty that I couldn’t even try to temper it a little with exercise. And not eating? Not an option. Because it also made me aggressive and cranky and angry, which translated into being hangry all the damn time. I was not fun to deal with.
It’s now July and I’m finally on a low enough dose of prednisone that I’m starting to feel sort of like myself again. Because the prednisone has been replaced with cyclosporine, which is an immunosuppressant normally given to transplant patients, but apparently it’s pretty awesome for getting your body to stop trying to kill your own kidneys. So that means I’m in remission now, yay!
But also… with all that going on, in February, my father died. That… is something I will maybe talk about later, but there’s a lot I’m still working through in my own head before there’s much I’d want to say out loud. Other than it fucking sucks. Grief is hard, and you have to just keep feeling all the feelings until you’re done with them or they’re done with you. I miss my dad. And I love him.
So yeah.
If you tl;dr’ed this post, here are the two things I want you to know, the absolute most important take-homes:
- If your pee is repeatedly foamy like a beer, GO TO THE DOCTOR. There are a lot of things that can cause it that aren’t super rare autoimmune diseases, and most of them suck. Don’t wait to feel sick.
- 2023 can eat my entire queer ass. Fuck this year.