This Year’s RA Costume

I wrote a post a year ago about my “RA Costume” and how having RA has physically changed my appearance since I was first diagnosed 17 years ago and how I have dealt with those changes.

Well, it’s Halloween night as I write this and I’m thinking about what my RA costume looks like right now and I’m not happy about it. I’m pretty disgusted by my “costume,” frankly, and maybe that disgust will push me to do something to change it for the better.

So what’s the problem? Why do I feel like I’m wearing the most hideous, ugly, mask of a costume that in no way represents who I really am? The main reason I’m upset about my physical appearance is that I’ve gained back all of the weight I lost over the last two years. And I gained it back in a very short period of time. All of that hard work of losing the weight and keeping it off? POINTLESS? Well, no, it wasn’t pointless. And I should acknowledge that it was a lot of hard work to lose the weight in the first place and to keep it off for quite a while. During those two years I have been on and off (mostly on) various doses of prednisone. And most recently, I’ve suffered through two sicknesses back-to-back while trying to finally wean myself off steroids. So, thinking about it, I have spent a lot of time lying around on the couch watching TV, sleeping, and just not feeling well.

As everyone with RA knows, it’s very difficult to be physically active when your body hurts. And it’s hard to stay emotionally and mentally positive when your body hurts, which also affects your energy and motivation levels. It’s a vicious cycle of feeling like crap, looking like crap, feeling like crap, not giving a crap, looking like crap, etc.

Looking at myself in the mirror tonight I see a puffy, overweight young woman with dark circles under her eyes, and a heaviness and weariness about her slouching posture. This fat, exhausted, unhappy RA Girl wants to turn off the light quickly and put on her pajama pants and curl up under a blanket on the couch and forget about the mirror. And also maybe eat some chocolate to momentarily feel better.

But, it’s really time that I stop doing that. And I’m going to. I’m going to throw away this latest RA costume. It’s not me.

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