You know when something big happens, and you go through stages of acceptance? I’ve been going through different stages since early November, considering that the United States is now being run by a budding fascist regime, but today, I had a moment when it really hit me.
It’s been an interesting day.
I had to leave work early due to pain which may or may not be Lupus-related. My Lupus is being a little bitch in general, so I finally made an appointment with a new doctor in at a local university that happens to be a teaching hospital.
Then I went to my appointment, to find that the level of care was night and day level different than what I had been receiving. I’m now under the care of physicians at the local teaching university, all of whom have faculty appointments. I finally have a doctor who understands my frustrations, is familiar with both Lupus and CIU, and doesn’t think we need to wait until my ANA markers look a certain way or I end up in full-blown kidney failure to start trying to calm my immune system down.
I also talked to them about my concerns about what may happen to the assistance program that helps me pay for my CIU drug, which I can’t afford on my own, with the changes that are coming under people determined to gut the healthcare system and privatize everything. They didn’t have a solution, per se, but they get me. And they have people who can advise and guide me through what my options are, should I lose that financial assistance.
While I am still in pain at the moment, and fatigued, I feel more optimistic about my personal health situation than I have in a while. New primary care practice is phenomenal, as is the practice that I see for the chronic hives.
At least, I’m as optimistic as I can feel knowing that my immune system is trying to kill me, that a medication I depend on costs $18,000 a month and I can’t afford that if my insurance and/or financial assistance get fucked with, and that the incoming
fascist regime Republican government considers me, a woman, less than human and not deserving of bodily autonomy or access to safe, specialized healthcare.
It’s a weird mix of “I finally feel like I have a really good team of doctors who I feel listen, understand, and are going to give me top notch care” and “Not everyone has the privilege I have to be able to access the healthcare providers I’m able to access, and that access is about to get a lot more difficult, and that’s profoundly unfair.”
I’m taking tomorrow off as both a physical and mental health day. I have a lot cooking in my brain right now, and I’m hoping to take some time tomorrow to finally start writing about some of it.
Even though I think the intent behind the safety pin is good, after some consideration, I’ve opted not to wear one. Here’s why…