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.

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SMA Pride Month: Biggest Lessons Learned

A lot of times, my life with SMA feels pretty normal to me - I've got my routine down, and I don't feel like I'm living all that differently than everyone else. But there have been times, over the years, where I've tried a little hard to pretend to be normal... and regretted it afterwards. Times when I didn't really fully embrace and accept the impact SMA has on me. So I thought I'd explain a little bit about those times today.

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SMA Pride Month: Current Adaptive Favorites

I think it's pretty obvious that SMA affects a lot of my day-to-day life - it forces me to be creative, and come up with different ways of doing things. And sometimes it's taking things and using them in a way that has an extra benefit to me - like the things I talk about in my Accidentally Adaptive series. So I thought I'd share some of my current favorite "adaptive" products - things that I use to make my life a little bit easier.

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SMA Pride Month: What Having SMA Has Taught Me

Since this is my last post for SMA Pride Month, I wanted to end on a high note. I wrote a post last year about coming to the realization that I am defined by my disability, and how that's okay. I wouldn't be the person that I am today if I didn't have SMA - it's had an irrevocable impact on my life. So today, I thought I'd share what I learned from having SMA.

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SMA Pride Month: Being Your Own Expert and Advocate

SMA is (officially) a rare disease - it affects about 1 in every 6,000 babies born around the world. That rare signifier means a lot of different things. Obviously, rare means rare in number - you may be the only person you know with your disease. Rare often also means that there aren't many (or any) treatments available for your disease. And for me, especially when I was younger, rare sometimes meant that even doctors didn't necessarily know much about SMA.

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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.

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