Her tears like diamonds on the floor… Jan 29, 2013
There are some weeks when I am running all over the place to different doctors, going for different tests, blood work, etc., and then times, such as the past few weeks, where there hasn’t been too much going on as I wait to see some new specialists. It’s been nice to not feel like a permanant fixture in doctors offices, but, in terms of blog writing, it’s been hard to come up with writing material.
I imagine my followers really don’t want to read “Man, lupus sucks. I laid in bed all day. The end.”
And the truth is, sometimes that’s all I do.
Lupus is a bitch of a disease. It’s up, it’s down, there’s good days, there’s horrible days, there’s in between days. There are days when the pain and swelling is so bad that I literally cannot get out of bed, and some days when I feel like I could run a marathon.
There is never any way to tell which one of those I will be when I wake up. And unfortunately, lately it’s been more of the latter.
Lupus is volatile and unpredictable. It’s like being in an abusive relationship. I hate using that analogy, but it is a perfect way to describe the disease. Things appear fine on the surface, but in the dark corners of your mind you know something is going to happen to set it off. It’s unsettling, the anticipation of knowing what’s to come, yet trying to pretend that you don’t know what’s going to happen.
And then, BAM! You do something to piss it off. You might not even know what you did, and most times, you never find out. You despise it, because you think about the person you used to be, the fun you used to have, the job you loved, the way you used to look. How hard you worked to get to a certain point, and how quickly it was taken away.
People don’t call and they lose touch because they don’t know what to say. They wonder, do I address the elephant in the room, or not? Do I mention the bruises, the haggard appearance, that the person that used to love dressing up and putting on makeup is now always in sweats. That the life of the party is now a homebody because she can barely walk up the stairs without getting short of breath.
For the most part, I take it in stride, and make the best of everything. I laugh, I smile, I make silly lupus jokes…
A priest, the Easter Bunny and a woman with lupus walk into a bar…
Not often, but sometimes, I can’t help but wonder, why me?