reeling as the old system lashes out before it dies

Not much to share this month, or at least not much I feel terribly interested in sharing because it seems like more of the same?

More doctors visits, which were riddled with preventable errors. More having to waste time reporting dumb errors that are harming me/my health/whatever to governing bodies. Profit-driven behavior lurking in everything. I flew across the country to Boston for a test a doctor told me I had to do at Mass General, which involved testing blood ACTH, which has to stay cold or it quickly degrades. The nurse stored the blood samples in a janky ass plastic bag on a sunlight windowsill with a freezer pack on top of it, and forgot one of the samples on the table. I actually had to get up and place it under the freezer pack myself.

So that’s what American health care at a Harvard-affiliated hospital is. Truly, what in the old systems is genuinely and consistently of a quality that is good?

I had a court case against a storage unit that has ripped me off. The judge broke the law in at least 2 ways that I could see, and I had to spend time reporting that, while continuing to fight this dumb storage facility corporate setup that everyone knows is not legally-regulated in a way that protects individuals…but it’s such a boring thing, storage, that nobody has made it into a cause célèbre, and is that the only way to ever get anything done?

My physical health is deteriorating. The Vipassana course I did over my birthday (April 2nd y’all!) really helped as it always does, even with what I thought was mostly physical fatigue caused by the Cushing’s condition. I have a consult with a neurosurgeon next week, another the following week, and an appointment with a new endocrinologist 2 days after. That will be hopefully the final trip to Boston until somebody great is operating on my brain.

After a bad experience with the first endocrinologist, who relied heavily on a brain MRI which is only 50% accurate in detecting the kind of tumors that cause Cushing’s (and mine was “clear,”), I found a Mayo Clinic 2024 study surrounding a new type of scan, the Photon-counting CT, which is 92% accurate when it comes to detecting these tumors. I figured out a way to order this myself for $40, using the study’s successful protocol as described.

I felt proud when this worked, and simultaneously a lot of…just like, kind of disgust, or rage, or devastation (all of those?) because what other patient is going to go to these lengths to get a diagnosis in the face of repeated medical mistreatment? They shouldn’t have to anyway, let alone when they’re already so sick and depleted. I live in the richest country in recorded history.

So yeah. Can’t wait for all of that to die. lol?

It feels like battling all of that has taken all of my focus and energy, and I do have an intuitive sense that I needed to get this body healthy before the path re: the next steps for Seeds would be clear.

It also feels like, once the tumor(s) itself is no longer actually physically melting my muscle and bone to layer on fat while I eat a calorie deficit, I’ll be able to physically shift into an energy that is about being well-resourced and supported - which is exactly what Seeds needs.

I still keep feeling like, I knew all of this would be hard, but I didn’t think it would take this long. It’s been a lot of years of the same shit.

But the flip side of that, I think, is that when these boulders are removed, I’ll be able to put in the same amount of effort and resourcefulness and energy that I’ve become accustomed to in these trying times, but without that weight. So I’ll finally be able to make tremendous progress, and Seeds will be able to get closer to helping the number of people in need it was always intended to - of truly making the leap to transcend capitalism.

xoxo,
Rachel