Monday morning started a long string of days that felt all the same. I had a blood test, ate foods I probably should not have, watched Doctor Who, and generally felt ok. It snowed in the evening, but we'd sorted out the medication issue and had some good safe foods. Inkwell was monitoring me closely, which was funny to watch and kind of pleasant. He's like a nurse without the constant BP cuff on my arm.
I looked up lupus and found the "symbol" for it is a purple butterfly. As I am a fan of purple, and I don't mind butterflies, so I mentioned on Facebook that I needed to find a pin or something to wear to indicate my issue while I'm using a cane or wheelchair. Shortly after, an amazing package arrived from a friend with a necklace, earrings, pins and other purple butterflies. It was really touching.
I also started getting a lot of premature lupus advice on Facebook, which was informative but not truly helpful quite yet. The kidneys are the real issue, and until they are healed, nothing else actually makes a big difference. If I end up on dialysis, the lupus isn't going to be my primary concern... although the lupus is causing the kidney problem. So I just have to concentrate on taking medicines that kill my immune system while trying not to get sicker. Easy.
Fortunately, I have a cat who reminds me to pee and a husband who is feeding and watering me properly and making sure I take my meds. Between the two, I will hopefully be ok until I can start my lupus adventure.
Tuesday morning I read the label on the foul-tasting medicine that I have dubbed "Satan Spit" that prevents me from getting pneumonia. It claimed to be "tutti-frutti" flavored. It's so bad I have to drink a tiny can of Dr Pepper after taking it to get the horrible taste out of my mouth. I literally have to brace myself to take the stuff.
I also got some "get well" cards on Tuesday, which was appreciated. I was tired and resting when Eric brought them in and read them to me.
I also started to obsess about the "magic cup" they gave me at the hospital. It's an ice cream/pudding designed to be high protein for patients who need proper nutrition but can't seem to get it. The orange cream version in the hospital was kidney-friendly and tasted good. But if I got them, I'd have to buy a case of 48, and I didn't think I'd need that many. Ha.
0 comments:
Post a Comment