Life Lately

Another month, another “Life Lately” post. It’s been really fun to write these – it helps me keep tabs of what’s been going on with me. Since time feels so strange right now, it’s especially helpful to have these to break things up!

Heather, a white woman in a power wheelchair, is outside on her front porch. She's wearing a black pleated swingy dress.

The biggest “news” in my life is that I’m now officially vaccinated for COVID – I’m more than two weeks past the date of my second shot. It is such a relief, and I’ve been (slowly, and safely) expanding my bubble a bit. I’m on the board of the Andy Warhol museum here, and they were offering small group (still masked) guided tours to celebrate the opening of their new exhibition, Fantasy America. I realized that I’ve really missed seeing art in person, and it was also so great to have the exhibition explained to me, too! I love art but am by no means an expert, so I got so much more out of the show having someone to walk me through it and talk about the artist and their work. I’m sharing a few pictures, but if you’re in the area, I definitely suggest going to see it in person!

One of Andy Warhol's pieces - the Statue of Liberty is overlaid with camouflage.
Two photos of national monuments, both with either a black or red strikethrough line of different widths.
Two photographs, both of which have long exposures, allowing you to see the passage of time.

I also decided to go all out and get “dressed up” for my museum outing! I love this dress so much (I actually own it in two colors) – it’s cute, but because it’s pleated and swingy, it is so comfortable. After being in my house almost exclusively for the last year, I’m really struggling to wear everything that isn’t completely comfortable. It’s almost sold out, but there are a few sizes left in each of the different colors. I’m hoping that stores understand this – I’ve ordered a few loose, flowy dresses in the last few weeks, and I’m crossing my fingers that summer sundresses follow this trend.

Heather, a white woman in a power wheelchair, is outside with some trees behind her. Her hair is in two French braids, and she's wearing a green plaid cape.

The warm weather we’ve been having here lately has also been so incredible. I’ve been going on some nice, long walks with Lily – the very end of our street is a dead end (blocks away), so it’s a nice destination point that takes us about 20-30 minutes round trip. I guess that’s not too long, but for Lily, it’s more than enough. She definitely loves it, and I love how nice the fresh air feels. I’m already starting to think about some nice outdoor meals at restaurants and I cannot wait.

I also had an appointment with a new neurologist, and we’re moving forward on trying to get me started on the oral treatment for SMA. Even though I live in a city with major medical centers, it has been a struggle to find a neurologist who I liked. Anyone with a disability/chronic illness knows that all doctors are not the same, and it can be hard to know where to even look to find other options when one physician is known as the go-to. It took some time, but I’m feeling much more hopeful now that I have a doctor who seems more interested and open to treatment for adults and a focus on quality of life. I’ll keep you posted on the progress getting the treatment, of course – insurance can take a while – but it was a really exciting step forward in the process.

I think that’s about it for my life over the past month! I’m tentatively planning some more outings and some get togethers with friends who are also vaccinated, and I’m just feeling so happy and hopeful. It’s a really nice feeling!

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