March 2010

Friends, I’ve been missing for a few days. Not because I don’t love you, or blogging, but because I’m having a hard time functioning right now. One of the best things about blogging {for me} is that no one can see when I’m sick, well, tired, happy, in my pajamas, in bed, or at my desk sipping {another} cold Diet Dr. Pepper. I can conceal when I’m not feeling up to snuff, which I kind of love because that’s pretty often.

I have this crappy, rotten, stupid, frustrating disease called Systemic Lupus Erythematosus, a.k.a. Lupus. At my house we call it Stupid Lupus. Because, you know, it rhymes and I have to make things fun for my preschooler!

Anyway, here’s how I look with Lupus.

Here’s how I look when I’m in a ton of pain and can’t get out of bed. Are you ready for it?

This is the problem. If I were in a wheelchair {which has happened on occasion} people give me sympathetic looks and say, “well aren’t you brave!”. I don’t want sympathetic looks or comments about bravery. And the only thing wheelchairs are good for is getting to the front of every line at Disneyland.

Here’s how it feels to have Lupus, even when you can’t see it on my face or on my hands, or in my joints:

I can’t get out of bed to feed my children in the morning. They both learned at an early age to fend for themselves in the kitchen. It’s not a matter of *trying* a little harder, it’s not a possibility.

My day-to-day pain, on my best day, feels like a really rotten flu. I ache. I hurt. I want to stay in bed and pull the covers over my head ’till it passes. I have zero energy, I feel like I’m walking through mud up to my neck. I can’t remember anything, my brain is completely muddled. That’s a regular day.

On my worst days, when I’m in a “flare up”, when my disease is really active because I’ve traveled too much, done a little too much home improvement, or because Stupid Lupus feels like it, things are pretty bad. I have so much pain I can’t concentrate on anything beyond getting past the moment. My hips, my shoulders, my ribs, the connective tissue all over my body, my feet, my neck, they all hurt like a combination of grinding, aching, and being run over by a train.

I can’t really describe it beyond the fact that I can’t function. It’s impossible to get out of bed, get showered, get dressed. It’s hard even to lie in bed and watch bad t.v.; all I want to do is get it over with. It’s not possible to do a mental exercise of “mind over matter”, the matter wins.

That’s the way it is, friends. I don’t need sympathy, but I wanted to share a little behind-the-scenes of my life. If I sometimes miss a day or two posting, or talk excessively about my obsession with pop culture, it’s because I’m busy coping, trying to get my head above water so I can get to the other end of the tunnel.

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