I hate Lupus. Lupus is the devil.
I talked to Dr D over the phone for my session. We talked about the emotional toll of this hospitalization. We talked about how things change so fast sometimes that it’s hard to keep up.
There’s a revolving door of changes. I can hardly keep up. Many changes are good, others a disappointment. I just need to stay the course.
Because I am unable to do 3 hours of physical therapy a day, I have lost the coveted hospital spot. I cried and cried. Now there’s a scramble to figure out where to put me.
I’ll get accepted to a nursing home where I’ll do an hour of physical therapy, but will I be well cared for? Will I spend most of my time looking at the ceiling, unable to move? Will they change me on time or will I sit in my own excrement for hours like I see on TV? Will I be physically safe? Will I sleep well or have to endure a roommate? So many questions.
There have been major improvements in my health in the last few days, things no one anticipated. Life will be easier in some respects bc I no longer have to take a shot in the stomach every day for the rest of my life. They’ve determined that I can take pill form, twice daily, for the remainder of my life. I still have to take prednisone forever but I feel I have good medical doctors who will look after my interests. I’ll have this medical team looking after me and monitoring. That gives me comfort.
Today I sat up on the side of the bed by myself. I took a photo bc it’s a milestone.
I’m on Morphine , Oxycodone and Percaset to ease pain. Morphine gives me nightmares but it helps so I take it.
Friday afternoon some friends are coming up to eat pizza with me.
People don’t know what to say or do so I tell them to bring food. Bring lunch meat and Doritos, 7up and something sweet. We’ll chat and chew through the awkward.
One visitor said he feared not knowing what to say to me. Sometimes a person’s presence is more powerful than their words. Despite not knowing what to say, he’s been here three times. Thank you for that!