I have Lupus.
Today is a really awful day for me. I feel like raging, so I will. Skip on by if you like.
I fucking hate this disease. I hate the side effects from the cocktail of medications we have to take for this fucking disease. I hate that I’m constantly shaking too hard to do anything worthwhile. I hate that I just spent half an hour trimming and tweezing the hair on my face because of the Prednisone. I hate that my face (and much of the rest of me) is swollen like a water balloon, even though I’m down to a fairly small dose of Prednisone. I hate that I’m sweaty and clammy. I hate that my hair is falling out of my head and growing everywhere else (but, my eyelashes look great). I hate that my knees are so swollen I can barely walk. I hate that I ache everywhere. I hate that my skin has weird problems. I hate that I have to worry about every little joint pain and whether that ache in my lower back is really lower back, or is it kidneys? I hate that I have to warn people before I see them that I’m swollen like a fucking blister and I look weird. I hate that I have to spend so much money on doctors and medications and supplements and I’m only 29 years old. I hate that, as soon as I taper down from the meds, my chronic headaches are back in full force. I hate that I have a really bad shoulder (which aggravates my headaches) that my doctors don’t seem to care too much about. I hate that the huge mug of tea I drank this morning has absorbed into my skin, and I feel like I’m going to explode.
I had things I was going to do this month, but my own immune system decided it didn’t like me any more, again. So here I am, looking at all the shit I could be doing, and instead sitting here in my chair, with swollen knees and a giant face, sweating and shaking and aching, unable to paint, unable to knit, unable to stand up to clean the filthy bathroom, unsure if I can actually go to the Biffy Clyro gig in Seattle next weekend because I may not be able to stand up long enough.
I don’t usually dwell on this shit so much. I try to be positive. Really, I’d rather have Lupus than many other diseases, and I am much better off than many other Lupus patients are.
But once in a great while, I have to have a Bad Fucking Day, and I have to rant. So here you go.
Thanks for reading.
I’m going to.. continue to sit here and do nothing useful to anyone.