Woes of the chronically ill 99%

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.


I am…so tired.

One of the things that sucks the most about having Lupus is how easily it can be triggered. I had to go to a meeting on the fourth floor of a building, only to find the elevator was out. So I had to slowly drag myself up four flights – which, to a normal person, wouldn’t be such a big deal. To me, it was an incredibly daunting task. On top of that, I work on the third floor of a building with limited elevator access – the elevator doesn’t go to my floor, so any time I need to go anywhere, it’s up and down stairs.

So I was worn out from that incredibly simple hiccup, then had two classes. One wasn’t bad – over by 8. The other isn’t over until nearly 10. I don’t get home until well after 10. That’s…really late in my world.

Not that I never stay up late, but it’s one thing to be laying in bed screwing around on my phone. It’s quite another thing to be in a classroom, trying to actively participate when I can feel myself completely shutting down.

It’s moments like that when I wonder, can I actually get a PhD? I want to keep working, because I don’t know if I’ll be able to work outside of home forever. Having a PhD in my field would help me in the future, as I could do consulting work remotely if I ever find myself unable to hold a full-time job. Which is a real possibility when you have autoimmune issues.

Thursday, between the stairs and the class, was so hard, and Friday I was dragging. My joints hurt, and I felt worn out. Then I wiped out so hard on Saturday just from walking at a leisurely pace around the zoo. Came home and pretty much crashed the rest of the day.

How…am I going to do this? How…the fuck…am I going to do this? This is just the first week…it hadn’t even gotten hard yet.

This is where chronic illness fucking sucks – I deal with the flares and times I don’t feel well better than I deal with the realization that this illness means there are things I can’t do. It’s when I feel limited that I really start to get depressed.

But we’re going into a new week, and all I can do is take it one day at a time. My goal right now is just to get through this quarter. One week down, nine more to go.