Guys, I keep meaning to update everybody, and I’ve kept putting it off, so now I don’t even know where to start. I’ve been struggling with my own thoughts and reactions to everything. It’s a lot, so if you don’t want to read it all, I get it. Then we elected an orange Nazi to the White House and empowered his merry band of psychos, so there’s that.
TLDR: I am so fucked. We are all so fucked, so I feel bad about mentioning my situation specifically, but I can’t afford to be proud. If you could possibly bring yourself to donate a few bucks to help keep my bills and especially my medical bills paid, I would be much obliged. I have added a donate tab to this blog and LinkTree.
But before I get to my (literal) bellyaching, let me say this about the political situation-- I know. I get it. I am as outraged and horrified and disgusted as the rest of you. But our despair is what they want. Broken spirits and broken wills are the goal. Broken people are easier to dominate. They don't fight back. We have to fight back. We have to continue to care for ourselves and each other, now more than ever. We define ourselves and our communities. Find your community. Build it, if you have to. Make it a sanctuary for yourself and for those who need it. American individualism is yet another thing that keeps us divided, cut off from each other, as if humans are not social animals. But we are, and if we lean into that, we could help each other thrive.
Racism and xenophobia are also the order of the day, even though America’s strength has always been its immigrants. My great-great-grandmother survived poverty, war, plague, immigration, and racism. She lost seven children and her husband to a typhus outbreak on the eve of the Mexican Revolution. She packed up the remaining family members and came all the way here, to the Midwest, from Michoacan. I have no idea how she made that trek, but she did.
They thrived. So can I. So can we.
We have to stay kind and compassionate - and no, I’m not saying be kind to bigoted pieces of shit. I have seen that paradox of tolerance post on about a hundred social media accounts, so you all know what I mean by that. I’m not saying that we should be naive, or doormats. I’m saying care for your community. We need each other. They can't take my kindness away. They can't stop me from caring about my fellow humans. That might mean fighting to defend the vulnerable. In our society, selflessness is a radical act. Selflessness, joy, optimism, compassion, empathy-- all radical. Be radical.
I may not have much, but what I have, I will share with those who need it.
I don't have any physical strength, but I will fight for those who cannot fight for themselves.
Don't let them take your joy away. Find it wherever you can. Share it. We only get one shot at this life. Don’t spend it despairing.
As someone with multiple, severe, disabling conditions, let me tell you – I have to triage every day. On a good day, my time and energy are EXTREMELY limited. I have to choose wisely where I expend that time and energy. I advise everyone to do the same now. We don’t have time to fuck around.
Now. On to my personal problems. Sorry.
CW: suicidal thoughts and unpleasant medical oversharing. No medical advice, please and thank you. Whatever you’ve got, I guarantee, I’ve heard of it. If I haven’t already tried it, there’s a good reason.
Last Wednesday, Patrick had to take me to the emergency room. I’ve had some pretty apocalyptic migraines over the course of my life. More than once, I have lain in a dark room and wondered if I was dying, having a stroke, having a seizure, or some combination thereof. The one I had last Wednesday definitely made my Top 10. It felt like someone had rammed a railroad spike in my left eye, and another one through the top left quadrant of my skull. I wanted to die. I wanted to bang my head against the wall. Emergency room doctors have given me morphine before, and that’s what I was hoping for-- if I can’t be dead, unconsciousness is the next best thing. But I also started throwing up. I’ve had migraines make me throw up before, but that’s not the norm for me. And I just kept throwing up. Uncontrollably. On the way to the hospital, Patrick had to stop several times so I could jump out and puke, and I still puked in the car. And on myself. Nothing like showing up at the ER with chunks on your shirt, eh?
The emergency room was packed. We ended up having to wait 2.5 hours to be seen. Emergency rooms are bright and loud. I had a plastic barf bag and sat there yakking in front of 50 or so people. I snapped at the teenager sitting next to me for drumming his feet on the floor. The doc ordered a CT scan of my abdomen and it turns out I have acute colitis, which often presents with a headache.
I have never been healthy. I am what the medical establishment calls a “complex” patient. I’ve always had multiple, major chronic health issues. I have weird allergies. I don’t tolerate most pharmaceuticals well– if there’s some god-awful side effect, I will probably have it. When the ER doctor asked me what conditions I have, I was like, “Uh, it would actually be shorter to tell you what ISN’T a problem. My heart. I think my heart is pretty much the only thing that functions properly. And maybe my bones. As far as I know, my bones are sound.”
Over the past four years, the health situation has become really untenable. My migraines have become almost constant. Last month, I had 24 migraine days. I experience vestibular attacks, which give me intense vertigo and nausea. It’s started to affect my balance, so now sometimes, I need a cane. It’s causing severe motion sickness so that I can barely ride in a car, let alone drive. I have started experiencing Alice in Wonderland Syndrome, which causes size and spatial distortion, so I have almost fallen down the steps a few times, among other challenges. The migraines cause hallucinations, mood swings, insomnia.
Two years ago, I was diagnosed with gastroparesis, which means my body does not digest food properly. It causes vomiting attacks, as well as early satiety and acid reflux. It is also associated with dysautonomia, which I also seem to have. In my case, my body can’t regulate temperature, so I frequently get intense hot flashes that make me red-faced and sweaty. I can’t wear sweaters or long sleeves anymore. I can’t use makeup because it just becomes a mudslide. Any little exertion makes me absolutely gross. Summer is torture.
I take an antidepressant that causes insomnia. I use medical marijuana for nausea and motion sickness, but it has killed my short-term memory. I often forget what I was saying mid-sentence.
When I was younger, I was able to shake off migraines to a degree. Now, they put me out of commission for at least three days. Between them and the stomach issues, I never get a chance to recover. At best, I am only ever operating at 50%.
Last February, my doctor put me on a new medication. It gave me hives for four days. I am allergic to Benadryl, so there wasn’t much to be done about it. I had never had hives for multiple days. I had them from my scalp down to the soles of my feet. The itching was so terrible, I wanted to throw myself off a building. I scratched myself bloody.
The only thing that has allowed me to keep a job these past six years was being able to work from home, and even then, I was struggling. Last July, I was knocked down to part-time. Not because I’m sick all the time, but because we got new management and underwent massive restructuring. I was relieved, but worried– would we be able to afford my salary being cut in half? I applied for dozens of jobs, went on five or six interviews, and didn’t get hired anywhere. But I was so freaked out– if someone DID hire me, everything has gone back to in-office. How would I get there every day? Would I be able to make it through any probationary periods without getting fired for absenteeism?
So. Can’t drive. Can’t travel. I’m pretty much a shut-in. I never go anywhere or do anything. It’s impossible to make plans because I never know how I’m going to be feeling from day to day. My diet is highly restricted. I often can’t sleep. I have poor concentration and retention. My job situation had become very precarious. You probably will not be surprised to hear that I became very depressed, despite the meds. I very seriously considered suicide because I am quite literally worth more dead than alive. I am tired of being in pain. I am tired of watching my life, which was already so limited, get smaller and narrower with each passing year. I researched methods. The only reason I didn’t go through with it was because, with my luck, something would go wrong and I would just end up a vegetable or something, and that’s the only thing worse than my current situation.
Once the restructuring at my job was complete, I had a new supervisor, and was assigned to a grant project. It was going to be a lot more work and a lot of pressure with no extra pay– basically, they wanted management-level work for secretarial pay. The new management was pushing for everyone to return to the office.
No thank you.
So I quit. I don’t have many good days anymore, and I don’t want to spend them in a job that I don’t especially like, and one that criminally underpays me. And here I am. Unemployed and unemployable. Still sick, exhausted, and on antibiotics, Zofran and weed. Colitis can last anywhere from a few days to four weeks, depending on the severity of the infection.
Trump is in office. I don’t even know what to say. Life just keeps kicking me in the nards and I’m not sure I can keep getting up. I quit my job just over a month ago, and I still haven’t fully processed and decompressed.
This is only scratching the surface of the suck. I have a whole catalog of other health issues. My laptop died last week. I just found out my primary care doctor quit the practice, so now I have to either track her down wherever she went, or find a new doctor. Our entire plumbing system had to be replaced last summer, which means a hefty loan payment every month, on top of my student loans and our grossly inflated mortgage. I can barely perform day-to-day tasks like cooking, cleaning or even showering regularly. We’ve had a housekeeper and a lawn service, but now that I can’t work, that’s over. My parents came over the other day to tidy up and do some laundry and it’s so, so demoralizing to be a grown-ass adult who needs Mommy to come over and change my sheets.
I know it seems like I’m a prolific writer, but pretty much everything you’ve seen get published over the past two years was written before 2022. I have only written a handful of poems since then and very little else.
I’m sorry to be such a downer, but I needed to get this off my chest. I will be applying for disability, but if you know anything about disability in the US, then you know people pretty much get rejected on the first try. It can take years to get approved, if at all.
Today was the first day I have felt a bit better. Since the election, I have frantically been collecting every happy/comforting TV show and film I can think of and mainlining them like a Community and Ted Lasso-lovin’ methhead. I’ve been listening and singing along to music. Art has always been my salvation. It will always be my salvation, my life jacket. I will make and consume art until I drop dead.
Find your salvation. Find your life jacket and strap it on. It’s going to be a long damn apocalypse.
