Typically I would’ve written this post last week, but ti didn’t feel right to share a general life update post without first telling you all about starting treatment with Evrysdi (this post). It was too exciting to just lump in with everything else I’ve been up to over the last month! That, of course, is the biggest thing that’s happened in my life lately, but I’ve had some other fun things going on too.
The month started off on a bit of a downer – we have an elevator in our house because it’s very split level, and it decided to stop working while I was using it to get from one floor to another. Luckily, because of how split the house is, it stopped on a floor where there was an exit to the outside, so I wasn’t too trapped. But even just getting outside required moving lots of storage boxes, two old wheelchairs we’ve grown out of, jumping the car in the garage with a dead battery, and doing lots of tight maneuvers with my chair. And that night and the next morning, I had to go outside around the side/back of my house to get to a floor with a bathroom/shower, and had to go back to the “main” floor to “park” my chair for the night and be carried (!!!) up a flight of stairs to my bedroom. However much of a hassle this seems when you’re reading it, I can almost guarantee it is worse in reality. And not shockingly, there aren’t a ton of residential elevator repair companies out there. So I had no idea how long the repair process was going to take. Happily, we were able to find someone to co me out the next day, and they were able to get the repair done by late afternoon. Such a relief!
The elevator repair actually happened while I was visiting the Frida Kahlo exhibit currently at The Frick Museum! It’s not her art, but rather photos of her throughout her life. I really loved the little glimpse into her life – she was such an incredible person, and I’m in awe of her life and her art. Lots of people know about her as an artist, as a political activist, and about her style, but less people know that she was disabled – she had polio as a child, and was in a really bad car accident as a young adult. I loved how she included her disability, and her chronic pain, in her art – it’s not hidden at all. If you’re in Pittsburgh, I highly highly recommend the exhibit – it’s running through the end of May. I should also note that I felt really safe in the museum – masks are required as are timed tickets to keep occupancy low. And I miiiiight have something exiting to share about the Frida exhibit soon, so stay tuned!
I had two birthdays to celebrate this past month, too – a good friend and my sister. It’s been really fun to celebrate in person, together, again – it feels like we’re celebrating not only birthdays but also just togetherness, as dramatic as that may sound. I’m really looking forward to more of this over the coming months – I have a friend visiting in May, postponed from when she was going to come in for my MPH graduation last year, and I’m so looking forward to it. Basically, I’m slowly and tentatively making plans again, and it feels good.
And then throughout the month – I have just been spending SO much time outside. Whether I’m just reading outside, or have actually turned my deck table into my “office” and am taking a Zoom call outside, I just want all the fresh air that I can. My allergies don’t always agree with me – my throat will sound scratchy and my eyes will burn and my nose will run by the time I head inside – but for right now, the extra time outside is completely worth any allergy symptoms that come along with it. I’m actually writing this post while sitting outside, ha! And I’m very, very excited for my outside time to continue.
