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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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Comments

  • Connie Rifenburg
    5 years ago

    What a great little diddy Angela. I love the idea that this body is just a costume covering the ‘real’ me. Thanks for the ‘knowing smile’ I just had as I read your post. It was good therapy for a while anyway. 😉

  • Glenda McDonald
    5 years ago

    Angela, I know exactly how you feel! As I read your article, it kept going through my head; been there, felt that! I too struggle with my weight. I finally reached my goal weight a short time ago, and it is a struggle not to gain back the 65 pounds that I have lost after most of my life as fat! I’m determined to not go back. Not to look back either! Be strong! Go forward! You can do it!
    The changes that the RA have made for me is aging! Pain ages a person! I look in the mirror and see a person who looks as if she is 75, while I am only 60! ( isn’t it funny how the ” I’m Only” changes as you get older?) The mirror women is stooped and her face is pinched and frail looking! I don’t want to look like that, but pain has definitely left its mark on me!
    Your article has really hit home with me! We can’t let RA win! We have to THINK stronger to BE stronger!

  • kim kopen
    5 years ago

    Angela, Thank you for this article, I just weaned off prednisone for the many times and I too put on 20 lbs. I have so many sizes of pants in my closet but I am afraid to get rid off them. I might need them. People don’t understand. They think I’m lazy . It’s ridiculous ! I am soon to be 51 years old and have had arthritis since the age of 23.Thank you for addressing this !

  • Tina Durham
    5 years ago

    Thank you for this article. You put onto paper what I feel everyday! It’s so hard to be happy go lucky and try to take care of everyone else when you can barely take care of yourself. I too have suffered several set backs over the last year. I always have good intentions of eating better, exercising more but then RA rears it ugly head and everything goes down hill. This is a very tough journey. One most people don’t understand!

  • Angela Lundberg author
    5 years ago

    Hi Tina,
    Thank you for your comment and reading my article. I appreciate it! I’m glad to know that you understand what I’m talking about, but I also wish you didn’t have to deal with it, too. It is extra hard to take care of yourself while having RA, and you’re right – most people don’t understand that at all.

    Thank you!
    Angela

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