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!
Today is Rare Disease Day - a day that acknowledges and celebrates the estimated 300 million (!!!) people with rare diseases. SMA is one of those diseases, so I'm one of those 300 million.
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.
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.
Last week, I got a piece of wisdom from a place that I did not expect at all - the Babysitter's Club reboot on Netflix!
At the end of last month, I had the chance to talk to the incoming first year students of Carnegie Mellon's engineering program about the importance of diversity in STEM. It was truly wild to be on that end of orientation events - it forced me to sit with the reality that my own orientation was fourteen years ago! It just doesn't seem possible.
It feels like the month has really just flown - I can't believe that I'm writing my last SMA Pride Month post for the year! Since it's the end of the month, I'm feeling kind of nostalgic, so I thought this week I'd write a little bit about looking back and looking ahead, and doing some reflecting.
I thought that I'd do one more Q&A post for SMA Pride Month. I got a few questions from Instagram and comments on other blog posts, so I wanted to answer those questions and not just the general ones I did earlier this month. I'll have one more post for SMA Pride Month next Monday, and then that'll be it for my dedicated SMA posts.
I realized that I haven't actually shared a lot about the more medical parts of my life and SMA. That's because, honestly, they're not something that I think about all that much - I've been using many of them for so long that they're just normal parts of my daily life!
One of the questions that came up during my Elizabeth Holmes Instagram takeover was what a typical day in the life looks like for me. Keeping SMA Pride Month in mind, I thought it might be fun to share an old-school blogging "Day in the Life" post, with a little extra information about the ways that SMA affects my normal, everyday life.