Welcome to the Rest of Your Life
Six years ago today, I entered into a showdown with my pancreas. I won, but it’s been a hell of a journey.
At the time this happened, I was doing extremely well at work and I was feeling really good about life, despite the odd digestive issues I was having–which I know know were signs of my gallbladder getting ready to have a hissy fit and turn my life upside down.
Now, I’m almost back to feeling as good physically as I did back then.
I’ve been through extraordinary amounts of pain and suffering due to inadequate pain management and doctors who walked right up to the edge of malpractice (when they sent me home the first time, they knew my pancreas had started to go necrotic). I have all the worst secondary issues, but I’ve also had some victories.
I recently went seven months without needing a paracentesis, when I’d been needing one a month and at one point, one a week. My pain is under control. My gut issues are what they are and I can cope with them. I still have my gallbladder, but I also won’t be getting any more stuck gallstones because of the sphincterotomy I had back in 2018. I haven’t been hospitalized since April 2023.
Despite not having a pancreas, my blood sugar is generally well under control thanks to my CGM and insulin pump. I am the very model of a compliant diabetes patient.
I have a great medical team now, all of whom I trust.
And while 2020 and 2021 were especially awful for me–I went from being a top performer in my department to, according to my abusive manager, a terrible employee. She was undermining and abusing me at every opportunity but when you’re stuck in a sick system and you’re desperately trying to keep the job you’ve loved for well over a decade, I found that I was willing to take and do what it needed to keep that job.
Then I had sepsis three time in four months and it suddenly became apparent to me that her only concern about my hospitalizations was how inconvenient they were for her. I decided to look for a lateral transfer in 2021, then she gave me another shitty performance review and lied to my face about it affecting my future job prospects with the company. A week later, she laid me off.
It was devastating.
And more devastating was the reaction to my Hugo nomination that year as well. The entire experience was extremely traumatic as I saw people I’d respected drag me as the “worst finalist ever” and the more cantankerous parts of fandom doing the same and even worse. I felt as if I were constantly under surveillance by that part of fandom.
But I also decided to retrain as a web developer and I had a job drop into my lap later that year. And while that job has definitely been a struggle at times, I generally enjoy it. I can’t work 40+ hours a week, so I work a part time schedule which has been a lifesaver–it lets me get enough rest and I don’t have to use FMLA for doctor’s appointments (which is not legal, by the way).
So, to sum up: I have a lot of different challenges in my life–including finding the energy to write here–but I also know who my real friends are, I have satisfying work, and when it came down to me or my pancreas? I won.
I am still here, living my life on my own terms, and every day I am so grateful to be alive.