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.