My earliest memories are of pain and nature entwined. North Dakota, where I grew up, has extreme temperatures fluctuating from ice cold wind that whips across the prairie and straight into your bones, to relentless dry heat, burning the summer grass and wilting the weeping willow trees. My dad would vigorously rub my white and red hands together after we skied or sledded through the high snow drifts around our brick, stone, and wood house. My breathing would slowly regulate as burning pain would replace numbness in my fingers and toes. We didn’t know that my nerves had already started to break down, causing autonomic issues as well as restricted movement and pain.

Summer weather posed other barriers: heat caused dizziness, fainting, nausea, weakness. After I got my first period at our local rollerskating rink on a scorching hot day in August, (Thank you, Donna the manager for giving me a pad and a coke and telling me that I wasn’t dying), two weeks out of the month were now beseiged with crippling pain that felt like a rake was clawing out my abdomen, along with what I now know as autonomic dysfunction.

Diagnoses were made of endometriosis, ovarian cysts and migraines that controlled so much of my teens and early twenties. I self medicated with crates of Bartles and James Wine Coolers and Marlboro lights, mainstays of a North Dakota teenager in the 80’s and 90’s. Marijuana was a godsend that helped regulate my mood and damper my incessant pain, but hard to get regularly. So I soldiered on.

I was told that having kids would take care of the endo, but nope. I lost track of how many laparoscopic surgeries that I had in between my babies and miscarriages. When I was pregnant with Roger, I found out I had not one but two blood clotting disorders (Factor V and Anticardio lipen) so I jabbed my swollen belly with blood thinners three times a day until I gave birth.

I wrote an article about how I went from years of being medically gaslit to finally on a path to my diagnoses in this article, which was inspired by reading about a white man who almost immediately got a diagnosis and then RAGE WRITING my own story, which was the exact opposite of his.

Since 2020, my official diagnosis tally is this: Central Nervous System Vasculitis (we call this “the brain bads”), Myasthenia Gravis, POTS, Sjögrens, Hashimotos, Small Fiber Neuropathy, endometriosis, and probably some other shit. We’ve started a Substack where I’ve written about my new normal and how to keep creating with a chronic illness. As Dory says: “just keep swimming.”