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.
Sometimes, I start to get paranoid that I’m going to get a flare again. Lupus is a funny old thing.
Lately I’ve been getting unnecessarily tired, which is a good sign of flareup. If I walk too much during the day, I then have to sleep for 10+ hours. That isn’t normal. I usually walk a lot, and it doesn’t bother me at all. Again, perhaps it’s the summer weather. So hard to tell what my stupid body is doing with itself. I guess I just have to wait and see if my joints start hurting, and then get a blood test done if I’m still worried about it.
I can’t even be safe in a plastic bubble, because my own immune system is the culprit.
Meh, enough whining. Just had to rant a bit.
The guitar pendant thing, as I expected, has died down. A friend bought one yesterday, but no other orders recently. Muse’s gig at Wembley in London is on the 11th of September, and I have several friends there, so I imagine I’ll get a few more orders after that. Then, we’ll see. It’s been a fun project, anyway. Any excuse to work with paints and glitter. :}
Bleh. I need more tea, or something.
I went for my regular checkup at the rheumatologist yesterday. Seems such a waste to go there, have the nurse confirm that I am indeed still on the same medications, have the doctor ask how things are, say they’re the same, have the doctor say great see you in 4 months bye. Oh well, she’s a really nice girl anyway. She reminds me somehow of my sister.
After that I went and got my labs done, oh boy. Needle in the arm and pee in a cup! Love it. The girl managed to scratch me with the needle too, but it’s just a tiny superficial thing. Didn’t notice until I took the tape off. Taking the tape off hurts far worse than the needle does. 😛
I learned from my doctor that that hospital has been out of seasonal flu vaccines for weeks, and is not getting any more. They are also out of the H1N1 vaccine, and she has no idea when they’ll be getting more of that. I’m now on a waiting list, and they are supposed to call me when they get to me. I wasn’t going to bother with the H1N1 thing, but more and more people with compromised immune systems are hospitalised or dying from breathing problems – so I suppose I don’t really want to go through that. Sigh. Can’t be giving anything like that to my frail old grandmother either.
I haven’t really been up to much lately. It’s cold and rainy and that seems to have made me really lethargic, not to mention my joints being too damned sore.
Finished a HUGE book today, ‘Imajica’ by Clive Barker. It took a little longer to read just because Clive is so wordy. But I loved the story. If you’re into dark fantasy (with a little bit of really strange erotica) and feel like absorbing 800+ pages, I highly recommend it.
Started another Doctor Who novel, and I’m really loving it too. I read half of it before I logged in to LJ. The DW novels are a lot easier to read, but this particular author is an excellent writer, and this story is a bit darker. Excellent after seeing The Waters of Mars.
By the way, after watching Waters of Mars, I am even more in awe of David Tennant’s acting abilities, and that says a lot. The man is absolutely brilliant. And the direction, and the writing…! Call me pathetic, but I literally could not speak at the end of the episode. I really want to find out how they’re going to explain and end this whole mess. But I really don’t want it to end. I am too addicted to the show the way it is. We shall see…
I have a picture ready for a new portrait, but I haven’t felt really into it yet. It’s a gorgeous picture. I ordered a backissue of a magazine specifically for said picture. Guh. I’ve decided I’ll do this one in graphite, because I can get sharper detail with that than I can with coloured pencils. This picture needs sharpness.
Too cold, must make some tea or something.