The last level of the video game looks like this:
I confess that laundry has been the toughest challenge on my independence goals list. Everything else got figured out pretty fast. As this image shows, the laundry in my rental is crammed in a corner of the bathroom, between two doors, making it even tighter. The washer is on the bottom, low and deep. And bending over is one of the hardest things for me to do. I wind up gasping for air and fighting to catch my breath.
The solution is a broken-down office chair (the landlord calls it “adjustable” that can roll into the bathroom if you turn it sideways to get through the doorway. I can sit in front of the washer to unload it, and use the OT grabber tool to get socks and small things out of the washer as needed. It works and I’m not panting and gasping for breath after. I confess to accepting a little help from Carrie with hanging stuff up but with two people there’s double the laundry here, so I’ll call it even.
Other unfinished business from my list of independence goals includes
- figuring out grocery delivery (but I am working on that).
- neighbourhood shopping/errand running (see below).
- take out trash (ditto)
I also discovered that I needed a way to apply various chemicals to my back in case I don’t have anyone staying with me. A lotion applicator has been ordered.
Another week, another cultural activity
Back in September when I didn’t think I was more messed up than usual, I bought a ticket for the Beat tour, which features Adrian Belew, Tony Levin, Danny Carey, and Steve Vai playing 1980s King Crimson songs–Belew and Levin were in the band, Carey is the drummer for Tool, and Vai is a metal guitar virtuoso who’s played with a lot of people and had a successful solo career. I hadn’t planned for Carrie to be here, or to need oxygen because at the time I didn’t. A friend had offered to drive me out to the Lynn Auditorium, which was enough.
Earlier this week I wasn’t even sure I’d be able to go given that I would need to have an oxygen tank in tow. A lot of these auditoriums with assigned seating don’t have much space between the rows and I didn’t have an aisle seat. I called the box office and the woman there very helpfully said she could move me on the day of the show, and to stop by. So Carrie bought a ticket, and we showed up. In the end, she got my Very Good Seat, and I got a slightly less good seat with a TON of legroom in front of it. My row was mostly people with prostheses: canes, crutches, etc., and there would have been a way to set up a wheelchair to boot. Nice of them to have that arranged.
The show was actually great. Vai’s interpretation of Fripp’s guitar lines was fascinating to see, and the band as a whole improvised more than I expected, which made the experience more unique. The sound was decent where I was sitting (yes, I wore earplugs).
Afterwards we stuck around for a meet-and-greet (benefits of knowing two members of the band). So I’m extra-tired today but it was worth it.
Here’s a picture of Steve Vai in a rather awesome shirt, and me with my nasal cannula and purse full of meds, right after I said “say ‘kittens’.”
Symptom / Side Effect Report
The rash is on the decline, and I am currently fever free.
It seems there is indeed some fluid in my lungs; interventional pulmonology gave me an appointment next Thursday. I am finding myself short of breath, so it’s a good thing. Makes tasks like laundry, and some of my PT, extra challenging. For now I’ve split my exercises into two sets so I’m not doing them all at once.
I am really profoundly tired after last night. Only napped a little today, though.