Category Archives: Progression

Just Another Day

Coffee. Coffee. CO-ffee, co-FFEE, coffeecoffeecoffeecoffeecoffee, COFFEE! COOOOOOFFFFFFEEEEEE.

That’s a song I wrote today. The tune doesn’t matter.

I haven’t had a cup of coffee since January, but this weekend there was a delicious cold-brewed jar of the stuff in a gift bag from my niece and…nephew-in-law?…waiting for us at the hotel. I tried some of it and it was good. Like, really good.

Now, I’m back home and I have that funny feeling that sometimes accompanies the end of a vacation. I’m happy to be back, but when Rob and Scarlett left this morning, I had a moment of sadness. We had a great trip together, and it turns out I’m just not sick of them yet. So I made coffee. And then I wrote my song. You have to do a kind of jazz hands thing at the end.

This blog is supposed to tell the story of what it’s like to live with ALS, but my inclination is often to gloss over some of the harder times in order to keep things light. Read More>

|Categories: Life, Progression | Tags: , , , , | Permalink

Wising Up

Rob is out of town again. It should be fine, since he barely travels for work anymore, but even once a month makes me anxious. I think it’s more the build-up to the trip that I dread than the trip itself. It’s easier when he’s here, because we have an understanding, a way of managing my illness, our daughter, our schedules. When he’s gone, I worry that it will all fall apart. But it never does. I have plenty of help, including family who traveled to be here this week.

Last night, Scarlett climbed into my bed. “Daddy isn’t here and I get to sleep with you!” She had the beginnings of a cold all day, but it wasn’t until night that they blossomed into full-on congested coughs, snorts and sneezes. Neither of us slept, and now she’s home from school, watching My Little Pony: Equestria Girl. As an aside: this movie is TERRIBLE. I tried to turn it off, but she begged to keep watching and I gave in. It’s 9:30am, we’ve already read six books and had a dance party (she spun, I laughed.) About an hour ago, I began to wonder why I didn’t just send her to school. Then she started hacking in my face, and I remembered. Read More>

|Categories: Age, Life, Parenting, Progression, Vanity, Venting | Tags: , , , | Permalink

Adjusting…eventually

This weekend, Rob, Scarlett and I went car shopping. Well, to be more specific, we went wheelchair van shopping. Little less sexy, right? There are a few places in the Bay Area that specialize in vans, and we went to one in Burlingame called Mobility Works. On the weekends, they are only open by appointment, which meant we had the whole place to ourselves with a knowledgeable sales guy named Mike.

Mike showed us new and used vans from Toyota, Honda, and Dodge. It works like this: you add a 25K conversion fee to the MSRP of one of these vans. Any add-ons (leather seats, sunroof, navigation, anxiety medication) cost extra. It gets expensive. Used vans can be a good option, provided you can find one that has all of your requirements. For us, the top three are: Read More>

|Categories: Life, Progression, Venting | Tags: , , , | Permalink