It's weird around here these days. Unless you're interested in weird medical stuff, you may want to skip this. In March 2020 I was days from death, thanks to a passive form of VSED (voluntarily stopping eating and drinking). The way I was doing it was legal, because my medical team documented that eating and drinking were just too terrible on me (severe pain from the first swallow through the entire digestive process and two hours of either violent shivering or feeling like lava was being poured over me. I've literally gotten heat rashes from eating a couple of bites of bread. For those interested in weird medical stuff it's what happens when a parotid tumor causes gustatory flushing--usually mild sweating and flushing around the face and hairline--in a person whose autonomic system is on its last legs, so they can't sweat, make goosebumps, feel the difference in hot and cold, regulate temperature or anything else your body does automatically). So not eating or drinking was easier, especially because I have a fantastic doctor and hospice team to manage the muscles spasms, etc. Oh, and I hadn't felt hunger in two decades. Had to train myself to recognize a kind of headache and shaking to remind me to eat. Then the coronavirus news really broke, and I wanted to get my husband through it so I started force-feeding again. Good thing, too, because my husband's employers basically had them all working around the clock (some companies in his industry closed down, but his didn't so took on the extra work) he'd have had no chance to find supplies or get groceries. And only because of me being medically vulnerable was he one of the few people grudgingly allowed to work from home a few days some weeks. I decided I'd hang in as long as I could, until my husband was fully vaccinated if I could manage it, though that was a long, long shot. Oh, and by this time, the autonomic stuff got so bad that even my husband turning a page in the next room or walking past me can trigger two hours of what my doctor calls "haywire." Basically it's like freezing and boiling and having panic attacks (they aren't but that's what it feels like) all day. Sounds, any changes in temperature, really, almost any stimuli triggers some awful stuff. I eat half an English muffin each morning and I have to go into the next room before the toaster pops of my body goes into full meltdown.
No one can believe I made it this far. I've been under 80 pounds since March 2020 (I'm 5'5"), and my vital signs are incompatible with life. My nurse said my heart would probably give out and out of the 3-5 things that we thought might kill me, that's the one I preferred. In October, I had what, without diagnostics, we are 99% sure was a heart attack, and have probably had several since. Weirdly, since that heart attack, I feel hunger again, though can't tolerate much, so that hasn't been fun (the same heart attack brought back my love of coffee, which I'd lost 18 months earlier after a concussion. My partially radiated-for-childhood-cancer brain is...weird). But, go heart failure!
What I forgot was that since 2003, I've had a pericardial effusion. I just got used to it, managed it without having to really think about it (eat less salt, dehydrate a little more) but now so much is wrong with my heart, we don't know what pain is from which problem, so I forgot. When my nurse and I did our first normal post-vaccine visit (we've been limiting contact), she recognized the pattern right away and said my effusion has put me at risk of cardiac tamponade, which puts extreme pressure on the heart and because we aren't going to treat it, there's a chance my heart could rupture before it kills me, which I am almost phobic about. So, we're trying to figure out what to do next. (I do get to make a lot of tampon jokes)
I'm wicked proud of how I immediately got us organized and stocked up, how I made things as fun for my husband as I could through this, and that he can know beyond a doubt how deeply and completely I love him. I got to vote for a candidate I'd been waiting almost a decade to vote for (VP Harris) and celebrate something I would have otherwise missed out on with a lot of people I love (I also lost around 20 friends, including my best friend, because so many were in medically vulnerable populations). I managed to make ear savers for essential workers for months, and did what I could to help my community, which pulled together in a remarkable way. I tried to write, especially working on an essay with a good hook: working my ass off to survive a pandemic I didn't want to live through, but I can't write anymore. That's a loss but one I knew was coming. My quality of life is unbearable and has been, and I think I had something of a breakdown this winter. I'm at peace now, and even if this virus never really goes away and some new variant starts raging, I got my husband to a place where he'll be able to do the things I did to get us through this. I got him a vaccination appointment for the day his stage opened up so I have I still laugh a lot and am getting to see a few friends, so for now, I'm just taking it moment by moment and so glad to come back here to say hello and see how everyone else is!