Happy holidays! My fellow columnist Alyssa Silva wrote a lovely column about holiday traditions. I love hearing about other people’s customs, especially this time of year.

What are some of your favorite holiday traditions? Do you have any special plans this year?

Anyone have fun holiday plans? I didn’t do much last year because, y’know, pandemic, but this year I’m hosting a little get together with my friends. I haven’t seen them since late 2019, so I’m super excited!

Happy Tuesday! Sherry’s latest column is maybe one of my favorite ones she’s ever written. Singapore has yet to approve Evrysdi (risdiplam), so Sherry wrote about the effect the potentially lifesaving medication could have on her wellbeing.

If you feel so inclined, please share the column on social media — we’re trying to get as many… Read more

Do any of you struggle with coughing up phlegm while sleeping at night? I’m sure a lot of it has to do with my allergies, but it’s starting to get really annoying — it’s hard to fall back asleep after a coughing fit.

Happy Tuesday! Our very own Kevin Schaefer recently interviewed the creators behind “Spaces,” including the artist James Ian, Dominick Evans, and Zack and Zarek Elizondo. Created entirely by folks with SMA, the “Spaces” project was a collaboration with Genentech.

You can listen to the interview here. Let me know what… Read more

I was considering birth control to manage my period when my friend suggested I try Flo’s PMS gummy vitamins. I’ve only been on them for a week or two so I can’t say for sure if they’re helping, but I thought I’d let y’all know. The gummies are super easy to chew, and they don’t taste bad, either.

Happy Tuesday! Because I’m taking a break from my column, I thought I’d shout out Sherry’s latest column about Yennefer in “The Witcher.” I love reading Sherry’s media analyses, and this one did not disappoint.

Have you seen “The Witcher”? Can you relate to Sherry’s thoughts on Yennefer?

Hi, loves! I’ve decided to take a break from my column through the end of the year. It’s been a long time coming, and I’m looking forward to the much-needed rest. You can read more about the decision here.

I’d love to hear how you’re looking after yourselves this holiday season. Let me know in the comments below.

Yay!!

It’s so cool! I love seeing some of my SMA My Way colleagues in the video. Not to mention the message of the song itself! I really hope we get to see more representations of SMA in other creative industries.

If you haven’t yet, be sure to share the music video on social media and stream the song on your favorite music platform!

Slow and steady wins the race!! Yes. Better to be healthy and slow than sick and fast, right?

Thanks, Robert!

Do you know if your Pixel has an accessibility menu? It’s a lifesaver on my Android.

Thanks, Blake! I definitely agree – our situations force us to get creative and approach issues from a different perspective. It’s one of the few good things about SMA 😅

Thanks, all! This has been really helpful. With my period getting worse (the fatigue is awful), I figure it’s time to look into solutions. I appreciate the help!

Happy Tuesday! My mom recently tested positive for COVID, so I wrote a column about everything that ensued. You can read it here.

Thankfully, my mom is well on her way to recovery. I’ll keep y’all updated!

Has anyone gotten their booster shot? I got the Moderna booster on Monday and it knocked me out for over 24 hours. It was worth it, though! Especially with my mom quarantining in our basement with Covid.

I’ve been going back and forth on starting birth control, but am seriously starting to consider it with my periods as disruptive as they’ve been of late. Does anyone have experience with it? My OBGYN was nervous about starting me on one but I think that was just because she’s unfamiliar with SMA.

Happy November! Last week, I was able to catch up with the SMA My Way team, which got me thinking about the past two years. I decided to write a column about the ways in which the SMA community has changed and my hopes for the future.

You can read the column here. Let me know what you think!

I was able to meet up with the SMA My Way team earlier this week and would love to get everyone’s feedback. What do you like about SMW? What don’t you like? What do you think we could do better? Do you have any suggestions for content or community engagement moving forward?

Happy Tuesday! I had another matricectomy last week, so I decided to write a column about my clinic. I wouldn’t go so far as to call it my home away from home, but I do love it there. I’m lucky to have had such positive healthcare experiences.

You can read the column here. Let me know what you think!

Do you have similar experiences with clinics?

I saw they announced the Pixel 6 earlier this week and was wondering about the accessibility features. Do any of you have a Pixel? I would love to try it out, given that I use a Google Home, but it wasn’t accessible to me last time I checked.

Happy Tuesday! My latest column is for my fellow millennials. I’ve been reflecting on “post-grad life” and how my employment — or lack thereof — has affected my mental health.

Can you relate? Let me know in the comments!

I got a new gaming desktop this week and am looking for new apps, games, and extensions. Any recommendations?

I know y’all are curious about my toe surgery, so I wrote a column about it! The procedure itself went fine — it’s the healing process that’s gotten complicated. I’m hoping the antibiotics will take care of any potential infection.

I’ll keep everyone posted!

Has anyone here gone through a similar procedure?

What’s everyone reading this month? I finished HOUSE OF HOLLOW by Krystal Sutherland in a couple of hours — I literally couldn’t put it down. A creepy read, but I highly recommend it if you like horror!

Happy Tuesday! For this week’s column, I decided to revisit a column from 2018, as I recently visited my local apple orchard. You can read the original column here, and my latest column here.

Can you relate with my therapist’s suggestion to feel the anxiety and do it anyway?

I had my ingrown toenail removed on Tuesday and it went well! The worst part was the lidocaine — I think I got around four shots. But I was fine once my toe went numb. I’m planning on getting a second matricectomy in a few weeks, so I’ll let y’all know how healing goes.

Oh, interesting! How does it work?

Happy almost October! My latest column is in response to the Philips Respironics recall, specifically their repair and replace program. Disability Visibility Project wrote an open letter that you can read and sign here.

Are you experiencing side effects from your Philips devices?

I just realized I never shared my Ko-fi page! I post pretty regularly, with extra content solely for supporters. If you check it out, let me know if there’s any kind of content you’d like to see — especially when it comes to disability advocacy and life with SMA!

Happy Tuesday! The news about the “Star Wars: Knights of the Old Republic” remake got me thinking about game accessibility. I’m excited to see how the remake turns out, but at the same time, I’m worried I won’t be able to play it.

You can read the column here. Let me know what you think!

Do any of you struggle with your hand falling off your joystick / not having the strength to put it back yourself? I attended an event with friends on Sunday and encountered that issue. Have you come up with a way to keep your hand in position?

Happy September! My first column of fall is all about rest. I realized the other day that I was burned out and needed to slow down for a while. Instead of beating myself up for doing nothing, I decided to see it as choosing rest. You can read the column here.

Do you struggle with letting yourself take a break?

From what they told me, the procedure addresses the ingrown part with a 5% chance of it coming back in your lifetime! I’m getting it done at the end of the month – I’ll let you know how it goes.

Do any of you struggle with ingrown toenails? I had an infection earlier this summer and am thinking about doing a procedure to get rid of them. Have any of you tried something similar?

I gave up a long time ago 😂 Dating sites just aren’t for me, and that’s okay!

I’m upgrading my desktop computer in a couple of weeks (!) and am considering a gaming mouse. Do any of you have one? I looked at the Razer series but I think it’ll be too big for me to use.

Happy last day of August! My final column for SMA Awareness Month is about performative vulnerability and the concept of leaving evidence. You can read the column here. Let me know what you think!

I’m planning on launching a Ko-fi for my work as a writer and disability advocate. Do y’all know of any advocates who use Ko-fi, Patreon, or Buy Me A Coffee? I’ve been looking at people’s pages for inspiration but haven’t found many disability advocates.

Where are y’all at when it comes to leaving the house and socializing? I’m torn. Obviously, I’m still taking precautions – masks, social distancing, avoiding big, indoor events – but I also feel like Covid is here to stay, and I don’t want to wreck my mental health. At this point, I’m leaning towards semi-social until the CDC suggests otherwise.

It’s so hard! I’ve been writing for over a decade and I’m still not quite comfortable with it. Good for you for attempting NaNo, though – I’ve only won a couple of times!

I have all my published work up on my website!

Happy Tuesday! Sherry and I decided to coordinate our columns for SMA Awareness Month — we wrote about choosing to stay disabled and, more importantly, the implications of that choice. You can read the column here.

In an ideal world, would you choose to stay disabled?

Where do y’all get your desks? I need to get a new one thanks to my new chair, and I’m struggling to find an accessible one. How do you deal with your footrest hitting the legs?

Happy Tuesday! My latest column is about my book — I guess that should be plural at this point? — and how I’ve struggled to accurately represent SMA. It’s much more complicated than I thought it’d be! But I’m sure I’ll get used to it as time goes on.

You can read the column here. As always, I’d love to hear what you think!

Do any of you know of any teeth whitening products that are accessible? I’ve tried teeth whitening strips but they’re a pain to apply.

Happy August, and happy SMA Awareness Month! To kick things off, I wrote a column about contradictions — specifically the contradictions that comprise SMA. I would love to know what you think! You can read the column here.

What are some contradictions you’ve experienced because of life with SMA?

Happy Tuesday! To wrap up Disability Pride Month, I decided to write about… well, disability pride, and how hard it is to do the concept justice. You can read it here. Let me know what you think!

How would you describe disability pride?

I’ve been working on getting a new chair for months, only to realize the seat was way too high. I couldn’t get under my desk or our dining room table! I tried to shave some height off the seat itself, but that didn’t work. I also found out that Permobil can’t alter the chair base. My desk is bad enough, but this means I won’t be able to get… Read more

We’re more than halfway through Disability Pride Month! Can you believe it?

I mentioned a couple of weeks ago that I was going to write a column about disabled characters in media. It went live yesterday, which means you can read it here. Let me know what you think — and if you have any favorite characters that I didn’t mention!