Wednesday, December 7, 2016

When someone asks me my symptoms and other negative babble

Ha! I swear that it's no wonder people don't think those with chronic illness are actually sick. Because, quite often, when I'm asked what my symptoms are, what they get in response is an open mouthed, blank, puzzled stare, as if I don't even know. When in actuality, what I'm thinking is, “Ummm where do I begin?” LOL

The list of symptoms associated with Lupus and Rheumatoid that I have experienced is extremely long. And honestly, you guys, I'm just as tired of talking about it as I am of going through it. I'm not really wanting to dwell on my pain and suffering every time I meet someone new. I'd rather talk about anything but my illness. Anything at all.

So.... symptoms. Well, I guess my answer should be, “You name it, Lupus and Rheumatoid will throw it at you at one point or another.” You know how comedians will poke fun at warning labels on medicine bottles? Well, that's exactly how a run down of chronic illness symptoms reads.

Severe pain, fever, chills, nausea, vomiting, severe diarrhea, limited mobility, permanent or temporary paralysis, acid reflux, lung infections, organ damage, kidney failure, nerve issues, tissue damage, joint issues, swelling, inflammation, low immunity, overactive immunity and on and on. The list never really ends.

I recently contracted Lupus related pneumonia. And guess what? Due to the type of Lupus I have, I can't get any preventative immunization that goes into muscle. So, I was both high risk and low protection. Great combination. Which is why I ended up in the ER 4 days before my son's wedding.

Sweeeet, right?

And the pain! You have no idea!

Have you ever had pain so bad that you actually cried? Real, hard tears, I mean. Not just “Oh, wow, that really hurts” pain. I'm talking about gut wrenching sobs. Pleas for mercy. Curling up in a ball, wishing for death to swoop you up in it's arms, knock you out and drag you away. Or worse, those silent tears in the middle of the night, shaking and quaking and trying like holy hell not to wake anyone up so they won't have to suffer with you? What if that was your daily reality? Well, there you go. That's Lupus and Rheumatoid.

Thank goodness for non-flare days!

Problem is, though, even when you do get a few days of relief, you know it will always be back. You just don't know when or how it will present itself. 

So, you can't work, even if you want to. And believe me, I want to. If you work for a living, you might think of staying home all day, every day as the best thing that could possibly happen to you. It's not. It sucks big time. Oh, the first couple weeks are heaven. Maybe even the first month. But after that, it's just a never-ending sameness, no matter how many ways you find to occupy your time.

It's also pretty hard to find ways to occupy yourself when your income is zero, due to illness. Even the simplest hobbies cost money, you know? Now, I'm lucky to have people in my life who keep me in art supplies and that type of thing. The boyfriend gets it since he's the one who gets to listen to me crying, night after night. So, he's kind enough to replace broken computers and so I can keep writing. In fact, he supports me completely and literally these days.

And you know what? I'm no gold digger, so that really bothers me. I was always a self sufficient individual until Lupus and Rheumatoid reared their ugly heads. Heck, I even kept working long after it was healthy for me to do so. I feel like that's true of most people with chronic illness. I've even considered going back to work now that I've been officially told not to. And on more than one occasion. That's how much it bothers me.

Anyway, I carry on. And I do manage to stay positive, even though this little rant may not be. I have hobbies. I paint. I write. I take photos. I make the house pretty. It doesn't stay that way long.... LOL But so what? I try. I spend time with the grand-kids. The boyfriend takes me on road trips. He drives most of the time since well, you know. Rheumatoid and those long drives equals ouch! That ain't happening.

And of course, I educate people a bit about chronic illness with my blogs. It really makes me happy to help people, you know?

But please don't ask my my symptoms. It would literally take days to answer you. Plus, it would remind me of what I'd rather forget. Aside from the fact that I write about it a lot, in "real" life, I don't really like being defined by my illness. I don't want to be that person people mention to other people with chronic illness. Oh, you know, Jaipi has Lupus too. Maybe you two can get together and talk about it.

Ummmm no. We don't want to talk about it. We want to forget it.

If only it would let us.

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