A true behind-the-scenes look at my last posting. The post behind the post.
This was written in the wee hours of a Wednesday morning, during a “spur of genius madness”, about a day or so after I posted my last vlog to YouTube.
I didn’t announce it to the world. I didn’t voice my true self behind-the-post and a part of me does feel a small sense of guilt about it. I gave myself a goal of wanting to post my last video to my blog by the end of that weekend (which honestly wasn’t even achieved in the long run, so there was no reason for the hurry). I wanted to be able to show the end result. My arm in its entirety, opening and closing at my command. Still, there was so much more that I wanted there to be that I ended up almost entirely missing the point at all.
I started my blog and vlog as a way to update my friends and family on my health status, and it isn’t that I’m unhappy with my latest post in any way, but it truthfully was intended to have a lot more grit to its grain.
My lupus symptoms are back and they have been for the past few months. What this means is that I’ve been having “flares” on and off in multiple joint sites-where they will stiffen to the point of painful immobility- and I was surviving through my day to day life within a constant cloudy state of fatigue. Because of this I was placed on (everyone’s least favorite prescription medication) prednisone aka “the juice” aka “‘roid rage heaven”.
I wrestled with the idea of explaining why when I moved my arms on film, they jiggled a little bit more. Maybe I could have contoured my rounded-out-moon-face like I had so masterfully learned to do 3 years ago, after returning home from the hospital, when I gained 50 lbs from said least favorite prescription medication… if a “favorite” one really even is such a thing.
I am proud of the things that I have overcome. I am not ashamed to say how I am feeling or what it is that empowers me to make me feel stronger. The bottom line is though, that we can’t all be strong all the time and that some days will be harder than others.
Nowadays when asked about my health, more often than not, people won’t ask me “how I function” but they instead will ask something that’s almost completely unexpected on my end: “how do you stay so positive”. The truth is, I wasn’t really trying to be. I was almost unaware of the fact that “positive” would be the chosen adjective to describe the way I share myself and my story. So my easiest response to that question would be this:”that’s just who I am”. That it’s the kind of personality I have. I’m an Aries and I deal with things head on and deal with the wreckage and carnage later. That’s how I survive and that’s how I’ve always been.
Still, maybe I’ve been selling myself a little too short. Prednisone comes with a bevy of side affects, those including but not limited to increased appetite (hence the weight gain), insomnia (hence the fact that I’m currently writing this post at 12:50 AM on a Wednesday morning), hot flashes (..you don’t even wanna know why that’s a hence) and also severe and intense mood swings.
For example, Gilmore girls was never really my thing. I’ve seen a few episodes here and there, but the fast-talking jokes sometimes made me feel a little dizzy. Today I watched the new Netflix trailer and needed a box of tissues to remedy my random ass river of sobs.
Lupus is no joke. The medication to remedy its symptoms kind of is.
Anyway, the easiest and best way to get through these hardest of days, nights, and in-between is to remember that in the end, this too WILL pass. I won’t be on steroids forever. I, myself know that I live an active and mindful life and that the weight gain and mood swings are eventually going to dissipate. I’m doing the best that I can on a daily basis to ensure that above all else, my mental health is at an equal or greater state than my physical health is at all times.
It’s only for now. This isn’t forever. Make a fool of your inner demons. Nobody can tear you down but you, and you’re not gonna let that happen. Not today. Not ever. I just thought I’d let you to know that. This is what you have to convince yourself to be true in order to move on, and you will. I know this because it’s been my internal monologue for the past few months. Now, almost a week later and my days have already been so much better than the Wednesday morning, roof raging, version of myself could have ever imagined them to be.
Stay mindful, my friends.