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Amy’s Fight Like A Girl Story (Lupus)

Amy's Story (Lupus)Lately, even as sick as I am — recovering from a lupus flare that began six months ago — I’ve learned to be grateful for the disease I have. My appreciation slowly started maybe about a year ago when I was starting to feel somewhat better and was told I might be going into remission.

Well, life happened, as did stress and working, and my disease pulled a 180. I had been diagnosed for a little over two years at that point and I was shocked to find I could get really sick. I thought it would just be the everyday symptoms that were managed *fairly* well with my medicines. I guess not because I found myself unable to work and struggling to take care of my five-year-old daughter. Of course, this flare happened about the same time I moved back out on my own (away from immediate family), so I was alone the majority of the time.

But I pulled through. It hasn’t been easy and I still struggle every day. Sometimes I think I’m worse now than when the flare started, but the thing is, I don’t waste my time anymore. Something I had begun to learn a while ago, but it didn’t *truly* sink in until now. I know who and what is important. I know what I want to do. I’m not using what little time/energy I have busting my butt to make money just to be sick and not be able to spend quality time with my kid.

I’m now a freelance writer and editor — that’s what I went to college for and, about ten years later, I am finally using that education and doing what I want to do. I can’t go out and work 40 hours and make the money other moms can. I can’t keep the house as clean as others and I certainly can’t cook as well as others (although that’s always kind of been an issue!).

I’ve learned to use my time to advocate and lobby and speak and volunteer and use my *writing* voice to spread awareness about this disease that not enough people know about. I’m actually undertaking a large project right now, having to do with spreading awareness, and am beyond thrilled about it.

But the most important thing is, as much as I absolutely hate lupus and what my days are like because of it and what I’m limited to, at least I know I’m limited and I’m not wasting the beginning of my thirties feeling I need to be social and do this, that, and the other because everyone else is. I have my family — my man and my kid. I have my parents and grandparents, and a few close friends. These are the people who have stuck around and who matter. And they are the ones who get my good time.

And, again, I’m now living my dream, which I don’t think I would have had the strength, nor the opportunity, to do if I wasn’t sitting at home waiting on a disability decision and rethinking my life plan.

So, thank you lupus. Thank you for giving me perspective and insight into life and what is really important. Most people my age haven’t figured that out yet, so I deem myself lucky!

Amy Cate
Indiana
Submitted 11-13-10

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

4 comments

  1. I love that this got published! Thank you so much 🙂

    If anyone is interested in my project, feel free to visit my website::
    http://thewildwithinme.wordpress.com
    =D

  2. This story was very warming to me and I’m only a teenager so I could never go through the stress you went through with raising a child or having a job. I’ve had lupus for 6 years and I know the symptoms all too well. And you know what? We can overcome lupus with happiness and love from our friends and family. (:

    • I *know* I’ve responded to your comment before, Alyssa. (Or at least I did in my head but never got around to doing it.) You probably won’t even see this at this point, but I just wanted to say how brave you must be. My mom and I have spoken before about what my life would have been like if my assumptions had manifested earlier and I was diagnosed in, say, high school.
      You may think it is hard with a child and a house (and it is — I’m just now starting to go through close to 2,600 sq ft of things to see what I can keep in the small studio type of space I’ll be living in soon. My own space in my family’s house), but I admire you so much, dealing with lupus while younger. And the outlook you have on your life and, more importantly, your relationships (which,I have found, mean just about everything in life).
      Looks like you’ve claimed your power, too, which is phenomenal! I wish you nothing but the best :))

      – Amy Care*

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