busybee fluffy rambles

1978: Born. I had several birth defects which were surgically corrected.

1985: I remember having chronic problems with my knees this far back, with my patellae spontaneously dislocating during hikes and family walks. I was never taken seriously for this. I also remember having chronic recurring pain in my feet, which was often blamed on those birth defects and never seriously evaluated.

1986: I taught myself to touch-type, and remember extended periods of typing causing pain in my hands, which I just thought was a normal part of computer use and “building strength.”

1989: My handwriting was terrible because trying to write longhand would cause cramping and I always felt like I had to hurry to get words onto paper while I could. Teachers always blamed this on me being “inattentive” or “not caring,” and this is when I started to get bad grades on my homework based solely on legibility. One well-meaning but super-clueless teacher gave me a penmanship primer for kindergarteners. I would ask for accommodations like being allowed to type my homework and was always denied because “it would be unfair to the other students.”

1991: This is when my chronic sinus issues began (usually manifesting as bouts of acute pain in my face and nose), and also when I started to get super interested in graphics programming as my future career. Hand pain from spending all night on the computer just felt like part of the deal.

1995: I graduated high school a year early and started college. All-nighters spent programming with bad ergonomics led to severe wrist pain and occasional finger numbness.

1997: I developed what I believed to be full-blown carpal tunnel syndrome for the first time. I found that wearing wrist braces would let me compensate for it well enough to keep using the computer. On break from school my parents took me to an orthopedic surgeon, who said point-blank that he didn’t believe in carpal tunnel syndrome. He told me to just keep using wrist braces and taking ibuprofen. No other medical interventions were deemed necessary.

1998: Wrist pain was a constant companion. I saved up from a summer job to buy a DataHand. It helped somewhat, for a while. I also had a part-time job at the university’s IT department. My boss was kind enough to procure an ergonomic desk for me. It helped a little.

1999: Graduated college, got a job in the Washington, D.C. area working at a really shitty software company that expected me to work 80+ hours a week, was constantly admonished for taking regular typing breaks, and the DataHand stopped being helpful. I ended up burning out after three months and moved back to New Mexico, and was granted readmission to my university for grad school to start in January, 2000.

2000: Went back to grad school. Carpal tunnel and pain issues came back immediately. Tried discussing them with my department head; he told me that life is tough and everyone has to deal with their problems on their own. No support provided. At this point I was basically wearing my wrist braces all the time, and taking ibuprofen pretty constantly. I joined a performing arts group, and one member of it was also a massage therapist who also had fibromyalgia. She was kind enough to give me free massage therapy, and also had some tricks for dealing with her fibromyalgia which, strangely enough, helped me somewhat as well.

2003: Abandoned my PhD research due to burnout, even though I didn’t have much further to go. At least I got a master’s degree. I struggled to find a job, but I kept on being promised a position at a local government research lab that would start “real soon” but it never quite materialized.

2004: Moved back in with my parents, and literally the next day that research lab position did materialize but I could no longer actually accept it. Probably for the best. Anyway, I did some temp/consulting work for a while, before getting the job at Ubisoft, where I had poor ergonomics and non-stop permacrunch, and I was in constant pain. I also started on HRT for the first time, but got nervous when I started to feel like I was having leg pain indicative of a DVT and I figured I should wait until my life was a bit more stable.

2005: Started at Amazon for the first time. I was under constant stress and this made my pain flare up pretty badly.

2006: Saw another orthopedic surgeon, who properly tested me for carpal tunnel syndrome, and said I didn’t have it. He tried giving me cortisone shots in my wrists to see if it would help with the inflammation anyway. It didn’t.

2007: Left Amazon for Sony in San Francisco. It was much more reasonable and manageable.

2010: Sony started to get stressful due to a hard and sudden pivot to agile methodology. My manager at the time would insist on having our conversations happen via text message even when I was in pain; he “didn’t want to stop listening to [his] music” and insisted that I was whining about being paid a lot of money to work on a computer. At this point I was popping ibuprofen like candy. Every project I worked on kept on getting canceled or made redundant, and my motivation plummeted. I had a constant hammering in my head. The death of my grandfather (with whom I was extremely close) made me wonder what the fuck was I even doing with my life, anyway.

2011: I burned out at Sony and left for a startup, only to go back a month later because the startup was even worse. I finally restarted my HRT. Soon after, my boyfriend of two years suddenly committed suicide under some pretty fucked-up circumstances. This was incredibly traumatic and left me with panic disorder and IBS, and also made my chronic pain systemic and widespread, rather than localized to my wrists and forearms. I stopped eating and lost 20 pounds in a month, which people congratulated me for. Caffeine became a panic trigger, and going cold turkey meant I was no longer treating the ADHD I didn’t know I had, and I was under constant brain fog and had focus issues, which amplified my stress and made my pain even worse. I got absolutely no support from management for any of this (including never even getting a single iota of sympathy regarding my bereavement; as it turns out my toxic shitty manager had withheld that information from everyone else for reasons of “respectability”). I started to dream about moving back to Seattle, where I was at least happy and where things were fairly affordable.

2012: While I was visiting friends back in Seattle anyway, Amazon called me about a job interview, and said they’d pay for my trip to Seattle since I was already there. I took them up on the offer. They ended up extending me an offer which was way better than what Sony was paying me and I figured I’d go back if they were going to pay me to move back to Seattle anyway. Immediately was immersed in a much more stressful situation than I was led to believe, and my work situation was way worse than the one which led me to leave Amazon in the first place. I also had a major panic attack while driving which left me anxious every time I got behind the wheel (and in fact I didn’t drive again for two whole years, it was so bad).

2013: Changed teams at Amazon, and it was more of the same, plus I’d been thrown under the bus by my previous team for leaving and so my stress magnified exponentially, and with it, my pain. I tried to seek help and was stymied by bureaucracy and backstabbing.

2014: Enough was enough and I left Amazon for HBO, which was a lot better. For a while, anyway.

2015: Moved to the VR team at HBO, which was simultaneously the best and worst decision I made while there. The work was way better, but it was all in Unreal Engine, which had the absolute worst ergonomics of any development environment I’ve ever used, and so my pain flared up to the worst it had ever been. The manager on that team also had some very strange ideas about how to manage people, and kept on piling much more work and stress on me in ways which just seem unreal and cartoonish but in any case led to a vicious cycle that had me in extreme agony.

2017: Left HBO to cofound an augmented reality startup as CTO. Things were better for a while, but I had a DVT which became an embolism, and I was diagnosed with a clotting disorder (I’d probably been having minor DVTs for years prior as well, looking back). Due to my blood thinners I could no longer take ibuprofen for pain management. At this point my pain spiraled out of control and I stopped being able to program full-time. As CTO my hope was to be in charge of directing other engineers, but the money never materialized to the point that we could actually hire engineers for me to direct.

2019: Got a job at the university and switched my CTO role to part-time. Pain and brain fog made it very difficult for me to do the actual work that was asked of me. I finally got diagnosed with fibromyalgia, and the rheumatologist’s explanation made so much of the previous things just fall into place. Unfortunately, fibromyalgia turns out to be a dead-end diagnosis, as it basically just means “you have a bunch of symptoms but we don’t know the cause or any treatments, and also doctors who don’t believe it’s a thing will now forever just dismiss you as being crazy, sorry about that.” I ended up leaving the university later that year when things were picking up for the startup (which ended up not lasting very long). I also finally got diagnosed with ADHD, for which I have failed to find a treatment that works long-term without horrendous (and often life-threatening) side effects.

2020: Stepped down as CTO and went back to working full-time for tech companies. Between constant pain and brain fog I ended up not lasting very long at any of the roles going forward. I kept trying to find leadership roles at places I cared about and kept on getting bait-and-switched about my actual job duties. I did manage to stay at one job long enough to be able to take advantage of the disability insurance, and had three months of recuperation while worrying about my career. The instant I came back from disability, the pain came back a thousand fold.

2021: I moved from Seattle to White Center, which was good because it reduced my living expenses and gave me space to garden and to make noise without disturbing my neighbors or being constantly assaulted by the WFH sounds of everyone in my condo building, but it was bad because it isolated me from the city and my friends. But I figured it’d be okay since I was finally getting comfortable driving again…

2022: I started yet another job, and it was yet another bait-and-switch about my duties. I tried a series of ketamine treatments. While it was helpful for at least navigating the 2011 trauma that fully instigated my fibromyalgia in the first place, it did nothing for my pain. In June, while visiting the office for the first time, I got COVID, and during my recovery from that I shared with my manager that I was still in too much pain to work and that I couldn’t keep doing this and I needed the actual job I was hired for. I was fired on the spot. Due to my firing being due to disability I was denied unemployment benefits. I finally gave up on the idea of ever being employed full-time ever again and applied for disability.

2023: I joined an amazing choir…

2024: …through which I got COVID again, which has only increased my constant fatigue and also seemingly left me with vestibular issues, starting a downward trend for my ability to feel safe while driving.

2025: I am still awaiting a disability determination in my favor (I have been procedurally rejected twice, by an uncaring system in which the cruelty is seemingly the point), and have been living off savings and investments since 2022. My money at least will hold out for a while, but a disability finding would make life a lot easier as I’d be able to hire help for things around the house and have access to more affordable healthcare and such. I’m sometimes able to work 10-15 hours per week on things I care about (mostly music), which isn’t enough to actually make a living but is apparently too much to qualify me as properly disabled, and ignores the fact that those 10-15 hours also include things like self-care and doing my dishes. Every now and then I’ll have a good enough week that I end up overdoing it the next week, and then I have a massive pain flareup and the cycle repeats anew. The vestibular problems have only gotten worse, amplifying my driving anxiety and subsequent isolation. Constant knee pain and fatigue make it difficult for me to walk to the grocery store, and even driving the half a mile there feels unsafe. Some weeks I can’t even do basic meal prep.

Despite that, I persevere.