Friday, May 31, 2019

Friday Favorites

I think there's something fitting about the last day of the month falling on the last day of the (work) week - it just feels right, you know? I'm looking forward to June, because it always starts to feel like it's officially summer. We've had a lot of rain this week, so I'm hoping that the new month brings new (and better) weather.

As of right now, I don't have any real plans for the weekend, and I'm so happy. I'm really looking forward to some reading and coffee drinking outside - perfect weekend relaxation.
On to this weeks favorites!

ONE - Fosse/Verdon Interview
I've been watching Fosse/Verdon on FX, and love it. Michelle Williams is so absolutely incredible in this, and the show is all about Bob Fosse and Gwen Verdon and musicals, so I was already interested! This is a great interview with the actual daughter of Fosse and Verdon. She talks about her parents, what her life was like growing up, and how the show compares to her real life.

TWO - Mandy Mouse in Peppa Pig
I do not have kids, so I don't really know anything about the children's TV show Peppa Pig other than the fact that it's very popular. Even so, I love that they introduced Mandy Mouse, a new character with a disability who uses a wheelchair. When kids are see disability on TV, they become more comfortable with it in real life - and they grow up to be adults who are comfortable with disability, too!

THREE - Good News for Alex Trebek
Any other Jeopardy fans out there? I can't even imagine the show without its host, Alex Trebek. I'm so glad to hear that his cancer is in near-remission and he's doing better, and hope to see him in many more Jeopardy seasons to come.

FOUR - My Favorite Sunscreen
Summer time means more sun, which for me means more of a chance of getting a sunburn. I burn really easily, so I try to be very cautious about wearing sunscreen. (I actually already got burnt once this summer accidentally and am trying extra hard to keep it from happening again!) I'm also picky about the type of sunscreen I use. I like the spray-on kind, because I feel like it's easier/faster, but almost every single one has alcohol as a main ingredient, which is actually damaging to the skin! It seems really counter-intuitive to me to include it in something meant to protect your skin. I will basically ONLY use this spray sunscreen by La Roche Posay on my body. It's alcohol free and sprays on, though you do have to rub it in a bit. I highly recommend.

FIVE - Mindy Kaling Interview
I love Mindy Kaling's shows, her books, and her commitment to diversity in bringing her own stories and interest to the big and small screens. I can't wait to see her new movie, and am excited to learn more about her upcoming shows, too!

SIX - Campaign Training for People with Disabilities
I found this on Twitter and knew I had to share. This program is called Elevate, and its goal is to help people with disabilities who have considered running for some sort of elected office learn how to do so. It's so important - people with disabilities have so much to offer politically, and are incredibly under-represented. This is such an amazing opportunity.

Wednesday, May 29, 2019

Perfect Carry On Bag

When I was flying to Dallas earlier this month, it became clear that I still need to find the perfect carry-on bag. I have a suitcase that I love, but my carry on bag still isn't quite what I wanted it to be. I bought a new one from Amazon to try for my most recent trip, and there were some things that I liked about it, but it wasn't quite right for me. I realized that I need a bigger bag - I like to carry some of my medical supplies on in my bag, to decrease the chance of it getting damaged, and I use pillows on the flight to help position me comfortably, and they also have to be stored somewhere. The bag that I bought just didn't have enough room to fit everything comfortably. I ended up having to put some of my things into my mom's and sister's bags because I just couldn't fit them into mine.

So when I got home, I started doing research to find the perfect carry on bag. I knew that I wanted more of a tote bag in shape, and definitely not anything with a hard shell or wheels. I need my bag to be able to fit in the underseat area, and something without too much structure is so much easier for that. I also wanted something with pockets/organization so that I can actually find things easily inside the bag. I did a lot of Googling, a lot of comparing, and found a few final contenders that I wanted to share.
Top Row: Dagne Dover XL Landon Caryall; Cuyana Classic Overnight Bag
Middle Row: Mark & Graham Maggie Overnighter; Sole Society Lacie Duffel
Bottow Row: Madewell the Essential Overnight Bag; MZ Wallace Large Sutton


I think that I've decided on the Dagne Dover XL Landon Carryall Duffel Bag. I love that it's flexible, it has so many pockets, a laptop sleeve, and even a removable pouch that will fit my iPad. It will definitely be big enough, and I'll be able to squish my pillows in there and won't have to worry about them slipping out of my bag. I'll let you know how it works out after my next trip!



 My other options were the Cuyana Classic Overnight Bag, the Mark & Graham Maggie Overnighter, the Sole Society Lacie Faux Leather Duffel Bag, the Madewell The Essential Overnight Bag in Canvas, and the MZ Wallace Large Sutton Shoulder Tote. You can scroll through them in the widget below.

Now that I've got the bag situation figured out, I just need to pick out all of the perfect travel accessories to fill it with. If you have any suggestions, please share them with me!

Tuesday, May 28, 2019

Weekend Recap

I don't want to take away from the reason that we have a three day weekend for Memorial Day by saying that I really needed the day off... but it's true. I have been basically running on fumes for the last few weeks, and I was really grateful to have this extra day off.
I haven't done a weekend recap post in a while, and I had a nice mix of things going on this weekend, so I thought it would be fun. Friday started off with an early dismissal from work, and a really fun dinner at Smallman Galley to celebrate a friend's good news. I don't make it to the Strip District often, but I got there early for dinner because of my early dismissal and got to check out a new-to-me coffee shop/cafe, De Fer. It was so cute, and I'll definitely have to go back.
On Saturday, I got to see Dear Evan Hansen. I have been looking forward to seeing this show since it was announced that it would be stopping in Pittsburgh as part of their tour. I've been listening to the soundtrack for a few years now, and I was so glad to be able to hear and see it live. The show is so incredibly powerful, and I don't think there's anything quite like this show and the story line. If you get the chance, absolutely go see it (but also be sure to bring some tissues!). When the show let out, a night market was going on in Market Square, so I got to walk around that for a few minutes and resist buying something from every single stand.

Sunday was my day for sleeping in and relaxing, and catching up on TV (currently I'm bingeing Grace & Frankie), and reading outside (I'm in the middle on The Great Believers). I was so glad to be able to have some down time, and to be able to just have a day to myself! And on Monday, I got to spend time with family to celebrate one of my uncle's birthdays with a cookout at our house. It was a great way to wind down the weekend.

Friday, May 24, 2019

Friday Favorites

Can you believe that it's already Memorial Day weekend?! I don't know where May went, and I can't believe how quickly it flew. Going to Dallas in the middle of the month really made it seem very short to me!

I am looking forward to the extra day off this weekend, and also excited to see Dear Evan Hansen this Saturday. It's the final show of this year's subscription, and I can't wait.

Some of my favorites are from the past few weeks, not just this week, but I still wanted to make sure that I shared them!
ONE - Sinead Burke at the Met Gala
If you don't know, the Met Gala is considered the hottest of tickets. Every single person attending has to be approved by Anna Wintour herself - it's very, very exclusive. Check out this interview given by the first little person to attend!

TWO - Carpool Karaoke with Celine Dion
This is possibly my favorite carpool karaoke ever. Obviously Celine Dion has an incredible voice, but she is so hilarious in this! You absolutely need to watch.

THREE - Ramy Co-star Interview
One of the co-stars on the new show Ramy has a disability - and the best part is that it's a character with a disability played by an actor with a disability. He is actually friends with Ramy (the real person, not the TV show character... it's confusing, I know!), and this is a great interviewing covering his life, his disability, the show, etc.

FOUR - 143 Day
This is a really cute thing that Pennsylvania started this year - yesterday was 143 ("I love you") day here in honor of Mr. Rogers. The goal was to do a good deed or act of kindness, just like Mr. Rogers would have wanted

FIVE - Restaurant Reviews to Include Accessibility
I love this - the top restaurant reviewer at The Washington Post is going to start including general accessibility information in his reviews, and he got input about what to include from people with disabilities. Hopefully more reviewers start doing this moving forward!

Wednesday, May 22, 2019

Being Let Down

Sometimes I think that I say that too many different things are the one frustrating part of having a disability, or of using a wheelchair. Obviously, there are lots of things, big and small, that are annoying about having a disability. But usually, it’s not the disability or the wheelchair itself - it’s the way in which the world is not built to accommodate it.

Some of these things can be small - lack of curb cuts, flights of stairs - and others are larger and more complex, like airline travel. But the point is, there are lots of things that are just not built for wheelchair users to easily access. Which means that when I find something that does work for me, I come to really count on it and rely on it. I start to let my guard down a little bit, and don’t go through the song-and-dance of calling ahead and double- or triple-confirming that it will be accessible to me. And inevitably, something that I thought I could rely on lets me down.

I’ve talked a lot (here and on social media and incessantly in person) about my Drybar obsession. I can’t style my own hair - I can hold a blow dryer and dry my hair, but that’s it. No round brushes when I dry, no straightening brush, no curling irons. I have to hope that my mom or aide can do my hair the way that I want. Sometimes that turns out really well, and sometiimes it does not. That’s why Drybar is so great for me - I can go there to get my hair washed and styled, and it always turns out great.

I’ve been to Drybar here in Pittsburgh, and also in multiple New York City and DC locations. Each time, there is a removable chair in the hair washing area, so that I can wheel my chair right up to one of their sinks without having to get out of my chair. That is huge for me. Transferring and getting positioned isn’t always easy, and isn’t necessarily comfortable. Being able to stay in my own chair makes it a comfortable experience.

So when I made my Drybar reservation in Dallas, I didn’t call ahead and confirm that they had a removable chair, because I never imagined that it was something that I would need to check. But of course, I got there... and no removable chair. The manager told me that NONE of the three different locations in Dallas had a removable chair. Luckily for me, the staff was incredibly kind and flexible and worked with me to find a solution that worked. But they shouldn’t have had to, and I shouldn’t have had to stress and scramble to figure something out with them! A simple accessible solution already exists, and is already used in their other locations!

Accessibility should be standard. It’s disappointing, and disheartening, and was really jarring for me, especially since I was in Dallas for a meeting all about accessibility! And while I know it wasn’t personal, it felt like it was - it felt like they had made the conscious choice not to include an accessible feature they knew existed, because they didn’t value or think about my business. We should be moving forward towards full inclusion, not backwards, getting farther away from it.

Tuesday, May 21, 2019

Summer Sundresses

I don't know about you, but when it's summer, I like to spend all of my weekend time in sundresses. They're light and breezy, and they don't require mixing-and-matching to make an outfit like skirts and tops do. Shorts are not comfortable to wear since I'm sitting all day... I haven't been able to find a pair that both looks and feels good when I'm wearing them. So dresses it is.
As I was sitting in the very hot, very direct sun this weekend wearing a black dress, I began to think that maybe it was time to introduce a bit more color into my summer wardrobe. I do have this sundress from ASOS that you've now seen in more than one post, but I can't wear it every day! So I want to add a few more light and bright options to the rotation.... and maybe one or two black options, just to be safe!

I pulled together a few that I have my eye on below... let me know your favorite, and what your go-to easy summer look is.






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Monday, May 20, 2019

Quick Dash to Dallas

Last week, I had the most incredible opportunity to take a trip to Dallas to be part of AT&T's Advisory Panel on Access and Aging. I had been invited earlier in the year, but didn't exactly know what I was getting myself into.

It turned out to be really amazing. It was so exciting to be around a group of people who were also so excited and passionate about accessibility issues. We learned about some great products, but maybe more importantly, had some great discussions about disability and aging and access and everything in between. I can't talk about the details of the meeting itself, obviously, but it was just so invigorating to be able to take part in. I'm really so honored that I was asked to take part in it. Sometimes I feel like I'm a little bit out of my league at things like this, but I really felt like I was able to take part in the conversations and add to the discussion.
We stayed in the beautiful Magnolia Hotel, right in the very heart of downtown Dallas, very conveniently across the street from AT&T headquarters. It was the perfect location for walking around downtown. I didn't have a ton of time to explore the city (although we did head down a day early to visit with family, which was so fun!), but what I did get to see was all easily walkable.
I was a little bit surprised - for a city as big as Dallas is, I ran into a lot of sidewalk corners without curb cut ramps, so we had to do a lot of backtracking and lots of weird, circuitous paths to make our way around. I also didn't love the streetcar tracks all over the streets - they were SO bumpy and I had to cross them so slowly that the time to cross the street was basically over before I could even make it across! That one is less of an issue and more of a personal preference, but I'm sure I'm not the only wheelchair user who feels that way.

On the plus side, though, we had the best accessible minivan rental experience that we've ever had when traveling! Renting an accessible minivan isn't quite like renting a car - you can't get one from any of the major car rental companies. You have to use a company that specifically does wheelchair-accessible vehicles. One company we called said that they only do airport drop-off/pick-up Monday-Friday during normal business hours? Your flight arrives outside that window? You're out of luck. But we found Premier Accessible Van Rental, and they made the whole process SO easy and smooth and seamless. If you need an accessible minivan rental in Dallas, I highly recommend, and they're not paying me to say that!
The rest of my time there, I just explored - checked out the JFK museum, quite a few local coffeeshops, and the Dallas Museum of Art. I was really bummed that I was two days too early for the opening of their new Dior exhibit, but a kind docent did let me into the outer room to let me get a picture with the amazing dresses.

It was such a great trip, but felt way too short. I'm looking forward to next year's meeting already!

Monday, May 13, 2019

Straw Bans Revisited

I first wrote about the proposed plastic straw bans (and why I'm against them) almost exactly one year ago (read that post here). They may not be in the news as much as they were a year ago, but that doesn't mean that they're not happening. I actually think it's even worse - they make the news less, but they're remarkably persistent and keep popping up places that I wouldn't expect them to.

And it's not only all-out bans - it's shifts in what kinds of straws a restaurant or cafe will stock, by choice. I ordered a cappuccino out the other day, and unknowingly picked up a compostable straw, which was the only kind they had. It melted the SECOND it hit the hot coffee. It was almost funny how quickly it went from a straw to a wiggly blob. The compostable straw was completely unusable in a hot drink. And based on many life experiences, I can say that a paper straw would have been only marginally better.

So why not use a reusable straw? Carry a silicone or metal or glass one around for me to use whenever I want? It really all comes down to independence.

When you have a disability, small gains of independence are hard-won. I need help for so many parts of my day-to-day life; there are just a lot of things that I can't physically do alone. So I really treasure the moments that I do get to be by myself, and the things that I can do without assistance. And right now, one of those things that I really look forward to is going to Starbucks to get my cappuccino on my own. Mobile ordering make things even easier for me - I can place an order for the drink I want, it'll come with the right amount of milk/sugar that I specified (and I don't need to ask for help with that while I'm there), I pick up a straw so that I can actually consume my drink, and I leave. Simple, right? It's basically the same process for everyone.

Once Starbucks takes away those plastic straws, though, things get a lot more complicated. I order my drink, just like above, it's prepared, and I go to pick it up. But once I get my cappuccino, how do I drink it? Let's even assume that I am carrying around a reusable silicone straw, and that I'm able to get it out of my bag on my own. First, this is already a bit assumption - it's something that I need to make sure is always in a specific, reachable spot, because if I forget, or if it slips out of reach, I physically cannot drink my coffee. And then what do I do when I finish my cappuccino? Able-bodied people can just go into the bathroom, rinse it off, and move on with their day. It's not that easy for me, though. I can't get into the bathroom, so I'd have to ask someone to open the door for me, and then once I'm in there, I can't reach the sink or soap dispenser. And while I'm generally pretty comfortable asking for help, asking a stranger to clean my straw is a bridge too far for me. So I'm stuck with a dirty, sticky straw that I have to put somewhere until I'm home. And because I'm not only a once-per-day Starbucks customer, I have to repeat this whole process over again later with another reusable straw.

Maybe this sounds too detailed for you - like I'm blowing it out or proportion and overthinking it. But this is the level of detail that I have to approach every single part of my day with. And that's why I look forward to the things that I can do on my own, without having to deal with my own complicated logistics plus involving someone else for help. And it's more than just the planning - it's knowing that going for a coffee is something that I can do on my own. Banning plastic straws (or voluntarily eliminating them) has so many unintended consequences that people without disabilities just don't have to think about. If you want to stop using plastic straws, by all means, please do that! But don't force me to give up my independence while you're at it.

Monday, May 6, 2019

Pittsburgh Half Marathon 2019

Yesterday was the Pittsburgh Marathon/Half Marathon, which my mom has been running for 10 years now (you can read last year's post here)! Even though it was rainy, the city really comes out and shows up on race day, and it's really fun to see.
For the last 5 years or so, she and some of my friends/family have created a charity team for Cure SMA for the race. It's been so great to be able to have a team running to raise money for the organization that funds the seed grants for so many SMA treatments that are making their way through the approval process.

The thing about my mom running the half marathon, though, is that it means she's not around to help my sister and I get ready in the morning. And when we can't get an attendant to come help, it means it's all up to my dad. My dad definitely does help my sister and I, but he's not used to having to do everything that we need help with, plus get himself ready, and get out of the door on time. And when you have SMA, you can't exactly just rush and make it work and make it out on time no matter what. Things take the amount of time that they take - and they may take longer than they did last year, or the year before that.

All of this is to say that this year, we didn't make it to the race until AFTER my mom and friend had crossed the finish line. It was certainly not for a lack of trying - we woke up VERY early - but it was just the reality of it. It's frustrating for sure, and even more frustrating when you wish you could come up with one thing to pin the lateness on... but there really isn't any one thing. It's every single thing taking just a little too long, and each of those few extra minutes just adds up more quickly than you'd think. And I think this is one of the most frustrating parts of SMA. I'm used to using a wheelchair, that's not something that I even really think about on a day-to-day basis - I've never known anything different. But the way that simple, everyday tasks get time-consuming so quickly - that gets annoying. It's also the part that's the hardest to explain. Not making it to dinner because the restaurant has a step makes sense. Being late because things just took longer than you wanted them to is something that is harder to understand until you experience it yourself.

So, we didn't make it to cheer them on in the crowd, but we still did make it to meet up with them afterwards and congratulate them. It's not what we hoped for, but it's what we were able to make happen, and that's okay.

Friday, May 3, 2019

Friday Favorites

I seriously cannot believe it's already May! As busy and stressful as it was for me, April completely flew by. This weekend is the Pittsburgh Marathon, which is always fun (and tiring, even as a spectator)! I'm looking forward to cheering on my mom and friend as they run the half marathon.

It also seems like the nice weather is finally here to stay! I'm loving it and so happy to see color in the world again.
I feel like I had a mental list of SO many things that I wanted to share this week... and I've forgotten most of them. I do have some fun things to share, though!

ONE - Measles in Pittsburgh
This is so frustrating because it's so preventable with vaccines! Measles are serious and scary, especially for people with compromised immune systems or babies that are too young to be vaccinated. The count in Pittsburgh is up to 5 confirmed cases, and there's still a long while to go before the window for symptoms to appear has officially closed. Please, just get your vaccines - it really is so important! Your decisions don't only affect you.


TWO - ME! by Taylor Swift at the Billboard Music Awards
This song is so poppy and fun and has been stuck in my head/on replay in my headphones for a week now. I loved the performance of the song at the Billboard Music Awards - the production was so over the top in the absolute best way - and it made me so excited for her (yet to be announced) new tour!


THREE - MK and A on Hulu
My sister and I, plus our friends, were OBSESSED with the Mary Kate and Ashley Olson movies when we were younger. We had a specific piece of dialogue from "Winning London" memorized, and would randomly quote it. I cannot wait to watch all of these movies on Hulu (even though "Winning London" isn't actually included)!! I will definitely be marathoning them all.

FOUR - Instagram Changes Coming?
It looks like Instagram is planning to test some potential changes, including hiding the number of likes on photos, in an attempt to take away some of the obsession and competition surrounding number of likes. It would still allow you to see who liked your own picture, but you wouldn't have that information for other people's pictures. Personally, I'm totally fine with this - what do you think?

Thursday, May 2, 2019

Spring Sephora Sale

It's that time of the year again - Sephora sale time! VIB Rouge members get 20% off, and VIB members get 15% off, and it's the perfect time to pick up a few things that you've had your eye on, or that you're running low on.
I like to pick up a few fun things during Sephora's sale - things that I wouldn't necessarily pick out normally, but getting that 20% just makes it seem worth it! I do also stock up on a few tried-and-true favorites that I know won't go bad before I can use them. And I definitely try to make any pricier purchases during the sale period, to get the most out of the 20% off that I can! So here's what I'm picking up from this year's sale...

Bite Beauty Lip Stain in Orange Fizz
I bought this in the bright pink color a few weeks ago, and I fell in love. It's SUPER bright and pigmented, and it really does last like a stain! It feels like a balm, though, which I love. So I decided to pick up the coral color, too - now I'll be ready for summer!

Beauty Blender Set
I use a Beauty Blender for my foundation every day, and even though I was it daily, it still doesn't last forever. This set is just a great deal, and the perfect time to stock up!

Stila Liquid Eyeshadow
This one definitely falls into the fun category. Do I need a turquoise metallic liquid eyeshadow? Absolutely not. But this just looks so fun! I do have other Stila liquid eyeshadows and really like how they apply, so I figured why not go for it?!

Drunk Elephant T.L.C Framboos Exfoliant
I've been using this for a few months now, and I still think it's great. I love the texture of it on my skin, love the mix of AHAs and BHAs - really I just think it's a great product! But it's definitely not cheap, so I wanted to take advantage of the sale.

Charlotte Tilbury Colour Chameleon Eye Shadow Pencil
I am all for easy makeup application, and I love eye shadow pencils/crayons because they make the process so much easier. I had a green eye shadow from Ulta that I loved in high school and wore basically every time I "dressed up" (makeup when I was in high school was VERY different than it is now for kids in high school!). The "smoky emerald" color of this pencil seems like the grown up version of that eye shadow!

Peace Out Acne Healing Dots
These are great for covering up any acne that you have (face or body) overnight and letting them heal. Not only does it keep you from picking/touching, but it actually does help speed up the healing process. These were an impulse, checkout line purchase the last time I was in a Sephora, and I've been using them often and need a refill.

You can click through the widget below to see all of my Sephora sale picks!




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