I’ve been pretty absent from a lot of my responsibilities lately, including CreakyJoints.
The two main reasons are that, first, I haven’t been feeling very well. My quality of life has diminished, as I get up in the morning, go to work or school, come home and eat dinner, and crash before 9 p.m.
The weekends are slightly better in that I tend to stay up later than I am able to during the week, but I am only able to do that because I stay in my pajamas and do nothing – except maybe homework – all day.
Second, my beloved job is ending. The part-time position is ending and the full-time position was not to be.
So now I am looking for other jobs and trying to cast a wide net.
But the reality is, having this job was the really the first time since I moved to New York that it felt like home, and it felt like a place that I wouldn’t mind staying in for a while.
This job also came about at a time in my life, just after my dad died, when I could have easily stayed in bed all day, and never gotten up. But the hospital, the people I work with, and the patients, all gave me motivation to get out of bed every day because I had somewhere to be.
And where I was going, I was making a difference.
So in that way, it served its purpose.
But major life events, like changing jobs, are hard on everyone, and are especially hard if you are chronically ill.
I know that being a patient advocate is my calling. This is truly what I am meant to do. The path just isn’t quite as linear as I hoped it would be, but of course, I’m no stranger to the bumps and bruises that life creates.
I am trying to keep an open mind and staying positive.
And while I’m job hunting, I’m also getting my health back under control.
I changed medications. I stopped taking Tacrolimus and am now taking Imuran. I also had a cortisone shot in my hip for bursitis. These changes seem positive so far, but it is still too early to tell.
Overall, I am hopeful about the future, but deeply saddened by the chapter in my life that is coming to an end. It’s really hard when you feel so at home somewhere and then are told it’s not your home anymore.
But I know I am also lucky in that, despite my illnesses, I am still able to work.
I did learn, though, how tough it can be to work a full-time job and maintain quality of life.