Rare Disease Day and SMA

Every year on the last day of February, we celebrate Rare Disease Day - a day dedicated to raising awareness, engagement, and support for those living with or caring for someone with a rare disease. My disease, Spinal Muscular Atrophy (SMA), is one of those rare diseases! I put up an Instagram question box yesterday, and am answering a few of the questions that came up. I'll also be answering more on Instagram, so make sure you're following along there too!

Continue ReadingRare Disease Day and SMA

SMA Pride Month: What I Wish People Knew

For my last post of the series this year, I thought I'd share some things that I wish people knew and understood about my life. I want to share some of the big and small things - the things that you might not realize, or things that I've maybe mentioned before but are worth repeating.

Continue ReadingSMA Pride Month: What I Wish People Knew

SMA Pride Month: What I Bring When I Travel

Since I just got back from a trip to Charleston a little over a week ago, travel is still high on my mind. And since we drove to Charleston, what's also on the top of my mind is everything that I have to bring when I travel. Looking at the sheer amount of things that we fit into our car looks like a game of Tetris where none of the rows ever disappear. So I thought that I'd share the many different things I have to take with me each time I travel, whether it's for a short weekend trip or a week long one.

Continue ReadingSMA Pride Month: What I Bring When I Travel

SMA Pride Month: Knowing My Limits

I have been living with SMA for almost 34 years now, so I'm pretty familiar with it. I (typically, at least) know how I feel when I'm getting sick, I know what I need help with so I can shower, get ready, all that stuff, and I know to listen to my body and what it's telling me. Sometimes, though, I try to push past and ignore the signs - I want to do one more thing, or stay up just a little bit longer, or go out one more place - and I always end up regretting it.

Continue ReadingSMA Pride Month: Knowing My Limits

SMA Pride Month: My Life with SMA

July and Disability Pride Month might be over, but the disability-related content isn't over! August is SMA Pride Month (or SMA Awareness Month - you may see it both ways). Just like I did for Disability Pride Month, I'm going to write one post per week about something related to SMA. For this first week, I thought I'd start at the beginning, and share a little bit about what my own life with SMA has looked like over the years.

Continue ReadingSMA Pride Month: My Life with SMA

Accidentally Adaptive: Beis Koozie Sling

I'm so excited to be back with another Accidentally Adaptive post! These are some of my absolute favorite posts to write - I love showing how mainstream products also have adaptive uses. This one comes courtesy of an Instagram ad that I came across while scrolling through my feed - for the Beis Koozie Sling. I actually almost scrolled past it and had to quickly backtrack so that I could take a closer look. And it looked so good that I ended up ordering it immediately!

Continue ReadingAccidentally Adaptive: Beis Koozie Sling

Feeding Tube Questions and Answers

On Friday, I shared two pictures on Instagram for Feeding Tube Awareness Week. I've posted about my feeding tube a few times, I think - I had it placed in 2013, so I've had it for quite a while now! I think it's super appropriate to post about on Valentine's Day, because deciding to have my feeding tube surgery was possibly my biggest act of self-love, ever.

Continue ReadingFeeding Tube Questions and Answers

Accidentally Adaptive: Drybar

I'm so excited to be back with another "accidentally adaptive" post - I'm planning to turn this into a series! If you didn't see my first post about this puffer cape, the concept is that I'm sharing things that aren't technically meant to be "adaptive," but end up being accessible to me. The first one was a jacket, but this time it's a place, and one of my favorite places at that - Drybar.

Continue ReadingAccidentally Adaptive: Drybar