Monday, August 26, 2019

Dressing for the Weather

As much as I am personally sad to admit, the hot and sticky days of summer are coming to an end. It's already starting to cool down here in the early mornings and late evenings - you can tell that the hot hot heat of summer is going away. My birthday is coming up, so I definitely don't hate fall... I just hate that it means winter follows!
But I do know that there's something almost magical about those first few crisp fall breezes. They remind me going back to school as a kid - all the nerves, but also the excitement and hopefulness - of starting a new school year. And even though I'm a very different kind of student now, and I never really "leave" school so there's no going "back" to it, I still get that same feeling in early September.

I also get the itch to do some shopping. The sundresses that I lived in during the summer don't exactly cut it anymore. But I want things that still don't feel too heavy and cozy yet - something that will still remind me of the warm summer days but keep me a little warmer than a tank top.

I found this yellow midi dress (well, maxi dress if you're as short as I am) at Nordstrom Rack, and I think it fits the bill perfectly. It's still easy and flowy, but the sleeves and length are enough to add some coverage for fall. The mustardy yellow color, which I love, is also perfect for the changing seasons. And it's hard to tell, but there's little polka dots all over it, which is so cute. I can tell I'll be reaching for this a lot in the next month or two!





Friday, August 23, 2019

Friday Favorites

This is my last free weekend before the fall semester starts, and I could not be less ready! I could basically use a whole other summer break, that's how not ready I am. I'm hoping that I get to enjoy this weekend at least a little before I have to get back into "school" mode. On the bright side, fingers crossed, this should be my second-to-last first day of classes of my MPH!
 Now onto this week's favorites...

ONE - ASL at Dear Evan Hansen
I loved this interview with the ASL interpreters of Dear Evan Hansen in DC. The show has so much emotion, and this interview captures how the interpreters really work to convey all the complexities of the show and turn their signing into art.

TWO - Jonathan Groff's Interview
Honestly, I just think Jonathan Groff is incredibly charming and I'd watch him in anything. I still have to watch season 2 of Mindhunter - they actually film here, and I've been trying SO HARD to figure out a way to meet him! But this interview is just so cute!

THREE - Mindhunter Comparison
Speaking of Mindhunter, this is a really cool comparison of the show and the actual people who inspired it. It's fascinating to read about all the psychology behind everything.


FOUR - Lover Music Video
Taylor Swift released the music video for her song Lover yesterday, and it's such an intricate video for such a pretty song. I can't wait to listen to the rest of her album today (and then to re-watch this video and look for Easter eggs about the rest of the album)!

Wednesday, August 21, 2019

Recent Amazon Buys

I still, sometimes, cannot get over how quickly Amazon delivers things - I once placed an order at 12:30 AM and the package was delivered by 9 PM later that same day! I'm sure that speed influences me to buy more things that I don't necessarily need... but I buy them nonetheless. Here's what I've bought recently from Amazon.
Airpods Case
When I bought the wireless charging Airpods earlier, I didn't realize that they changed the case design a tiny bit, so that the light that shows if the case is charging moved to the front. My old case covered up that light, this case lets it shine through.

Echo Show
I loved my Echo Spot, but because of the number of microphones and where they were, it couldn't always hear me. This one has so many more microphones, it's so much smoother now. I also love pairing it with my phone and using it to listen to music - the speakers are pretty good!

Amazon Basics Sheet Set
I've tried sheets of all prices (even the pricey Brooklinen ones!) and honestly, I think that these are just as comfortable. I can't resist a cheetah print, and the grey goes perfectly with the decor in my bedroom.

T-Shirt Dress
I now own this dress in too many colors to mention. It's just the perfect comfortable summer dress - so light and swingy. I'm sure that it won't last very many seasons, but it's so comfy that I'm okay with that.


Monday, August 19, 2019

Weekend Trip to Philadelphia

This summer has been filled with lots of short, weekend-long trips - I actually haven't even been fully unpacking because I know that I'll just have to re-pack things a week later! The most recent trip was to Philadelphia. My sister had a bachelorette party to go to, and I tagged along because it's actually easier for the whole family to travel together. I'd also never been to Philadelphia, even though it's in the same state, so it was the perfect opportunity to see the city!
We didn't have a ton of time in Philadelphia - Friday and Sunday were both driving days, so I really just had Saturday to explore. Our hotel was in Center City, which seemed like the "downtown" area. Luckily, it was also dog friendly, so Lily was able to come with us - she's still not the best traveler, but she's getting better! There were so many things within walking distance, which was amazing. I started my Saturday out at Drybar - I'm always so excited to find one in a city that I'm traveling to. Hotel bathrooms can be questionable, accessibility-wise, so knowing that there's somewhere I can go to get my hair washed and styled is a huge relief. And luckily for me, it was about a 10 minute walk from the hotel, which couldn't have been more convenient.
From Drybar, I headed to Rittenhouse Square - it's a really cute park-like area lined by tons of restaurants and coffeeshops and stores. I was hoping to get a coffee from La Colombe, but unfortunately there was a step to get in and no ramp! It's such a bummer when I'm really looking forward to something only to find out it's not accessible. It's not surprising, because I encounter it all the time, but it's still disappointing each and every time. Instead, I had a delicious macchiato from Joe's coffeshop, which didn't have any steps!

We walked to what I'm going to call the touristy/historical area next - Independence Square. This is where the Liberty Bell is and Independence Hall are, plus a few other buildings. I do not enjoy lines, so this did not end up being my favorite part of the city. We actually skipped the Liberty Bell line and just saw it through the viewing window they have from outside the building. Honestly, the view is almost as good, as we saved at least 30 minutes waiting in line! We also went over to see Independence Hall. We thought we had lucked out, because the security screening line was only about 5 minutes long. But then we found out that there was ANOTHER line once you were inside for the actual tour of Independence Hall, and that line had a wait of about an hour. Since we would have only been able to tour the first floor anyway, we decided it was not worth that wait.

We headed back to Rittenhouse Square for dinner - we were hoping to eat outside, but some of the restaurants had a strict rule about no more than 2 people at the outdoor tables, and they wouldn't push tables together, either. There were so, so many different places to choose from, but since we didn't have a reservation anywhere, most places had a super long wait. We ended up at Parc and had a delicious dinner!
I loved that Philadelphia was so walkable, because it meant that I happened upon incredible sunsets like this one. What I did not love, however, is that they decided to mill/re-pave so many side streets at once. When you mill a street but don't get around to re-paving it yet, you're left with a HUGE gap between the curb cut and the street - it basically becomes a step rather than a curb cut, and it's so incredibly bumpy to drive across in a wheelchair. One street would have been annoying, but I ran into at least 10 that were like this. In some cases, it was so bad I actually had to cross not at the crosswalk but drive on the street with car traffic just so I could make it across. Not the most comfortable! However, if you didn't want to walk, the city does have wheelchair accessible Ubers (UberWAVs), which is great.

All in all, though, I really enjoyed Philadelphia. I totally get the appeal - it's not as overwhelming as NYC, but it's definitely more of an urban city than Pittsburgh is. Hopefully I can make it back again soon, with a little more free time to explore.

Friday, August 16, 2019

Friday Favorites

I got an e-mail this week from J.Crew asking me if I was ready for sweater weather - and my answer is a hard no! I am holding on the end of summer and time spent reading outside for as long as I possibly can.
ONE - Separate is not equal
This letter to the editor from the Post-Gazette is a good reminder that sometimes, even the best intentions go to further stigma and separation rather than eliminating it. People with disabilities don't always necessarily need their own, separate programs. Just like the letter mentions, working towards inclusion is harder and takes more time - that just makes it more worthwhile.

TWO - Peace Out Acne stickers
I picked these up as an impulse buy at the checkout line in Sephora, and I love them. They do seem to make my acne clear up a bit faster, and they also keep me from touching my face, which is equally important.

THREE - Little Women trailer
I loved this book growing up, and I'm excited to see this re-telling of it. The actresses are some of my favorites, and I've read that they've done some updating to make the book a bit more modern and feminist. My fingers are crossed that it's as good as the trailer makes it look!

FOUR - Michelle Williams interview
This is a great interview with Michelle Williams - it touches on her time on Fosse/Verdon, which I loved, and also talks about her time at the center of the Hollywood gender gap pay discrepancy.

Wednesday, August 14, 2019

#SMAStripes - SMA Awareness Month

At the end of last week, someone who I went to college with reached out to me on Facebook messenger. I wasn't close friends with her, so at first I wasn't sure why exactly she was messaging me... honestly, my first thought with any out-of-the-blue message is that they're trying to sell me something (LuLaRoe, essential oils, etc.). But actually, she was reaching out to me because she was pregnant, and just found out that her child had SMA.
I love that social media helps to connect this way. When I was growing up, it definitely wasn't this easy to find other families affected by SMA. Having a community is really, really important when you're affected in some way by a rare disease like SMA. There's no guarantee that your local doctor is going to be an expert, or even familiar with, SMA. You have to become your own expert, and that's so much easier to do when you can talk to other people going through the same things that you are.

The thing that really hit me, though, is how much has changed since my diagnosis. My experiences growing up with SMA are likely to be so, so different than someone who is diagnosed today. For one thing, more and more states are adding SMA to genetic testing panels, so people know if their child is affected by SMA when their baby is born, or sometimes even before. And that's important because of the treatments available now, which are more effective the younger they're given. There's even a 1-time gene therapy treatment approved for kids up to 2 years old - how amazing is that?

It makes me really hopeful for the future. There's currently an oral version of a drug in the research pipeline, which I'm crossing my fingers about. I'm glad that research and drug development is being done for all ages - adults with SMA have a much higher likelihood of easily accessing an oral drug rather than one injected through the spinal fluid.

August is SMA Awareness Month - I'd love for you all to join me in raising awareness  about SMA. The more people that have heard of it, the more chance the SMA community has of coming together, and the more chance that funding continues for the development of new drugs and treatments. Together in SMA has created a fun filter that you can use on social media during August - you can see my picture at the top of this post! It's easy to access - follow these steps:

1. Make sure you "Like" the Together in SMA page on Facebook.
2. On your phone, click either the "+" to add to your story, or click to add a photo to a new post.
3. When the camera pops up, click the 😊 and scroll through until you find the SMA Stripes one.
4. When you share your picture, make sure you hashtag it with #SMAStripes so everyone can find it!
5. Share away!

Friday, August 9, 2019

Friday Favorites

I don't know about you, but to me, when August hits, it starts to feel like the end of summer is looming... and I am absolutely not ready. I've had so many weekend trips this year that the summer has felt so disjointed - it seems like as soon as one trip is over, it's time to start thinking about the next! I'm hoping that the rest of August is a little bit calmer,

It's been a while since I've shared a Friday Favorites post! I wasn't on the Internet a ton this week, but I still do have some great things to share.

ONE - My Summit in the News!
I'll be back with a more in-depth post about the Summit I planned for Accessible YOUniverse at the end of July, but for now, you can check out this short write-up that the SEEN column of the Post-Gazette did for the event!

TWO - The Hadestown Soundtrack
I have had this on repeat for the last month or so. The show is based on the Greek myth of Orpheus and Eurydice, but you don't need to know the story to appreciate the music. It's just so beautiful!

THREE - Pittsburgh Airport Accessibility
The airport here in Pittsburgh just did a huge, inclusive renovation of part of their space, and added a sensory friendly room and an accessible bathroom with an adult sized changing table. It's so exciting to know that there's an inclusive restroom available the next time I fly! Check out this video to see two local advocates doing a "tour" of the restroom and explaining what an adult-sized changing table is.

FOUR - Being Toni Morrison's Assistant
The incredible author Toni Morrison passed away earlier this week. I loved this story written by one of her former personal assistants about his time with her and what he learned.

FIVE - Taylor Swift in Vogue
Taylor Swift's new album is coming later this month, and I can't wait. She's on the cover of the Vogue September issue, and has a great interview about her life and her work... plus some sneak-peak lyrics of new songs on the album.

SIX - Gourmet Pop-Tarts
I've shared a few of these "gourmet makes" videos before, where a chef in the Bon Appetit test kitchen makes gourmet versions of snack foods of her youth. This time, it's Pop-Tarts, and as usual, I love the video.


Wednesday, August 7, 2019

What I Read in June and July

It's been a while since I've done a post about what I've been reading, and since I do a lot of reading in the summer, the list is long. I've been making a point to read outside for a little bit each day after work, and it's been so nice. So here are the books that I've made it through this far.
The Light We Lost
This is one of my favorites on the whole list. It follows the lives of two people who meet in New York on 9/11. You can really feel the connection between the characters, and I could not put this book down - I just needed to know what was going to happen. It's not that the plot is something crazy, it's that the characters are that engrossing.

Whisper Network
On the flip side, this was not my very favorite. It's not bad, but it just didn't grab me. It's a mystery of sorts, and I just never felt like I really cared about figuring it out, which isn't a great sign.


The Night Circus
This ties with The Light We Lost for being my favorites in the batch. Totally different topics, but equally engrossing characters. This is about a magical circus and a challenge between two magicians... but I hesitate to call them magicians, because it's so different from magic in the way that you're used to reading about it. I'd been meaning to read this one for a few years, and was reminded when I saw the author had a new book coming out later this year. Now I can't wait for her next novel!


The Friends We Keep
This is definitely a summer read - it follows three friends from college through their adult lives, with some twists along the way. It's not too deep, but it's not too light and fluffy, either.


The Rainbow Comes and Goes
A few years ago we did a boat tour of the Ft. Lauderdale canals while we were there on vacation, and as we passed one of the Vanderbilt mansions, I learned that Anderson Cooper was one of Gloria Vanderbilt's sons. I had no idea! After she passed away earlier this summer, I decided to read the book they'd worked on together. It's a really honest look at her life, and beautifully written.


American Wife
This book follows the life of a woman who eventually ends up being married to the President. I loved the mix of political and personal - I think we all wonder about the behind the scenes lives of people who are so well-known, and what it would be like to go from a "normal" life to one without real privacy. I ended up really enjoying this book, even though I wasn't sold on it when I started (based on nothing, honestly).


Prep
This is by the same author as American Wife, and after I ended up liking that so much, I decided to read her first novel, too. This is a story of a teenage girl in a private boarding school, and it captures the emotions of being a teenager so well - there were some moments I could feel myself cringing at the awkwardness and uncertainty. It's a sign of a really good book when I have physical reactions while reading it, and this one definitely had that.


Manhattan Beach
This is a period piece, and I wasn't exactly sure if I'd enjoy it. But I ended up really being into it - it had really strong female characters and a great feminist plotline, focusing on a female submarine diver and her struggle to prove her worth and be accepted. It was really deep and complex, and I enjoyed that.

Normal People
I couldn't put this one down, but it wasn't the easiest to read, at the same time. It was dark, and it was one of those novels where you just want to scream at the characters sometimes and tell them they're being dense. But it really does live up to its name - it follows two very ordinary people through their lives.

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Monday, August 5, 2019

Ms. Wheelchair USA Pageant 2019

I can officially no longer call myself the reigning Ms. Wheelchair USA - a few weekends ago, I passed on the crown to the new winner, Brittany Hawley.
I wrote a post here about my year with the crown. It was a really great, exciting year, and an experience I never imagined that I would have. But when I'm asked if I'm sad to be giving up the crown, my answer is an easy no. I'm excited for someone else to have the chance to experience it! And while the crown may be gone, the work that I've been doing is just getting started. My time as Ms. Wheelchair USA was the perfect springboard for my work, and I'm looking forward to continuing it.
The other nice thing about going back to the pageant but not competing is that the pressure is off! It was really fun to go and meet all the woman and get to spend time with them without having to be nervous about my interviews or my speech or remembering what to do on stage for each different section of the pageant. I'm so glad to have met them, and will definitely be keeping in touch with them and following along with the great things that I'm sure they'll be doing.

I also got to meet the host of Disabilities Redefined in person, because he was one of this year's judges (I was on his YouTube show, you can watch it here). It's always fun to meet people in "real life" who I've previously only known through the internet, and especially cool in this case because he learned about the pageant through me!

Even though my time with the crown is over, I still am so grateful to be part of what feels like a "club."