Other than the stories about my life, my family, my co-workers, the various medical practitioners I deal with daily, I rarely talk or write about me. Well, okay, I write and talk about me all the time, but not the medical aspect of me. Well, maybe the insane and confused part of me. But not the lupus part of me.Okay, I did write that one tell all book about my life with lupus, but that’s it. I swear.
This is not that book. It’s not about the diagnosis, the nitty gritty, or even my fantastic medical team. This is about my day in, day out life with lupus.
I’ve never been extremely curious about what’s coming next. I don’t peek in packages, and surprises are never a really big deal, until it comes to lupus. Because of lupus I never know what any given day is going to be like, and I don’t mean what’s going to happen during the day, I mean if I will even get to experience the day. Before my diagnosis (BMD) I planned on waking thirty minutes early everyday so I could take an OTC pain reliever so I could get out of bed. I don’t plan that anymore - I count on it. I know without a doubt that when tomorrow comes, there will be pain.
BMD, I was never sure if I would need a nap, two naps, or an entire day on the couch for resting and being pissed at what I was not able to do. Today. In 2019, I am sure I will need at least one nap that I will not get today.
BMD, I was lucky to work one job without being fired, replaced, dismissed, or discounted. Today I don’t count, don’t want to count, and pack more into one day than a person who lives without lupus. Okay. I admit that might not be every single day, but damn near.
I work, I volunteer, I write, I read prolifically, and I teach at the local college, and I’m learning to draw and illustrate my own books. I also crochet, kill small trees, grow flowers, and will attempt the feat of growing vegetables in my yard. That’s quite an impressive list for someone who has lupus and at least four other chronic illnesses.
I’m not exactly sure where I was going with this story, article, piece of writing, but I like it that way. That’s how I live my life. I don’t give up, despite lupus, gastroparesis, arthritis, diabetes (insulin dependant), fibromyalgia, raynauds, and osteopenia. Most of the time those are simply words attached to me because of abnormal results on a test. I don’t live by those words, I live in spite of them. I don’t list these illnesses, syndromes, diseases, or whatever you call them so others will pat me on the back for not giving up. I do all these things to give you hope. To boost your spirit. To prove that even when dealt a tough deal, I am still in control. Perhaps not every day. Perhaps not even some days. But all in all, it’s still a fine life.