It’s Sunday… 6:45 am and I up fiddling around with my wordpress page ’cause I can’t sleep. It’s been a while since I posted last. About two years ago to be exact. My last entry talked about my desire to know where “lupus” came from. I have to be honest in saying I’m not any closer to an answer. Not that I was expecting some monumental revelation by this time, I just find it interesting that I’m still pondering that question on the same level.
I guess a lot has happened in two years. I moved to Jersey, got a new job and was accepted to Rutgers Diagnostic Medical Sonography program which I started in the fall of 2016. Not to mention moving in with my boyfriend putting an end to the whole long distance thing. There were certainly bumps and snags along the way, but for the most part, I seemed to be juggling things quite well. Or at least I thought.
You ever have a moment of reflection and think, “How the hell did I do that?” Well, one day my body finally let me know in the form of a lupus flare, which I jokingly refer to as Lupocalypse 2017, that I was doing the most. When I first started school, I was working full time. And I’m fully aware that people do it all the time. But to understand the intensity of my situation, let me explain a few things. First of all, I’ll explain the nature of my job. I was a counselor for people with developmental disabilities. When I say counselor, that can mean anything under the sun. Bathing, feeding, dressing, giving medications, driving, supervising in the community, etc. You’re basically helping them live their lives. When I started, I was in one of the hardest group homes within the company. There are different levels of dependency with these individuals. So what made this particular house challenging was all four members had a very high dependence level. They all basically needed you to do everything for them. Right down to changing diapers. I don’t want to sound like I’m complaining about the job. There are some very rewarding aspects. Nonetheless, it’s a difficult job. Quite frankly, people should be getting paid a hell of a lot more for it. But that’s a rant for another day. The point I’m trying to make is that it was challenging working full time and trying to complete a very intense, 15 month accelerated program at school.
A normal day would consist of waking up for school at 8 am or 6 am (depending on whether I had class or clinic). After class or clinic I would head straight to work where I engaged with the group home clients until around 11 pm. Also important sidenotes to mention are I never ate breakfast in the morning and a lot of these days I was carpooling with a classmate who I would take home after clinic, then drive all the way back to work in rush hour traffic on the other side of town. This went on for about 6 months. And if this doesn’t seem crazy to you yet, imagine also having to wake up on Saturday and Sunday mornings for work to keep your full time status. It wasn’t easy, to say the least. And now that I have a moment to reflect since Lupolcalypse 2017, I really wonder “How the hell did I do that?”
I can’t remember exactly when, but sometime between January and April, I noticed a little swelling in my feet and ankles. I’ve had this in this past with kidney issues. But since the swelling wasn’t too bad and I didn’t have health insurance at the time (by this time I had dropped down to part time at work), I sort of just brushed it off. I admit this was pretty neglectful on my part. It’s hard trying to rationalize certain things to someone who doesn’t live with a chronic illness. So I won’t make an attempt. Let’s just say I had my reasons. Anyway, towards the end of April I started feeling a general sense of malaise. I couldn’t really describe it. I just didn’t feel right. On the last day of April, I had intense UTI symptoms along with the malaise and decided to drive myself to the emergency room. And this, my friends, is how Lupocalypse 2017 began.
(Stay tuned for next post 🙂 )