Friday, November 30, 2018

Friday Favorites

What a week it has been! I know that I said I can't believe November is ending, and that's still true, but this week was loooong. I am really, really looking forward to the weekend.

This week saw the end of the City of Tomorrow Challenge... unfortunately, my team was not one of the winners, but that doesn't mean our idea has come to an end! It was still an incredible experience, and we learned (and accomplished!) so much in a really short period of time.

This week was also the Health Activist Expo, making it the one-year anniversary of me completing my Fellowship last year. It was great to be at the Expo as an observer, rather than a presenter, and see all of the amazing ideas this year's fellows came up with!

Onto the favorites...
 
Bon Appetit's Test Kitchen Obsession
I've written about my love of the BA Test Kitchen videos before, especially Claire's videos where she makes gourmet versions of junk food. Reading this article confirmed that other people love the videos - and the chefs themselves - just as much as I do! 

Interacting with People with Disabilities
Technically, this article is about advice for helping shoppers with disabilities during the holiday season, but the advice is really valid year-round. Take a look for a few minutes, especially at disability etiquette, and help make yourself more comfortable in social situations. I promise, we're not scary... and no, I'm not going to run you over.  

Great British Bake-Off Illustrator
Are you all as obsessed with the GBBO as I am?! This show introduced me to Paul Hollywood, and for that I'll be forever grateful! It's different from a lot of American cooking shows in that the contestants are really friendly with each other, and root for each others successes! This is a fun read about the illustrator tasked with drawing each of the baked goods made by all of the contestants throughout the season.

Get your Flu Shot
This is my semi-annual reminder to get your flu shot - it's not to late. This is why it matters that you get one, even if you personally are not worried about the possibility of severe effects of the flu. 

More iPhone Alarm Sounds
If you're anything like me, you use your iPhone as an alarm, but don't exactly love the harsh, blaring sound choices. Read this to find out how to "unlock" more alarm sound options!

Wednesday, November 28, 2018

November in Review

I don't know if anyone else feels this way, but I cannot believe that November is over and it's about to be December! It seems like the month absolutely flew by... and I think that's because of how busy it was for me. I had something going on almost every day, in addition to work - it was a really crazy month!

I thought it might be fun to do a little recap of the month... touch on things that I've mentioned, and some that I haven't had the chance to.
City of Tomorrow Challenge
Working on the proposal for this challenge has taken up most of my free time this past month, but it's absolutely been worth it. I've never done anything like this before, and I feel like I learned so much and really pushed myself out of my comfort zone. I don't have any business background, but I definitely learned the importance of making connections. So many people were so generous with their time and energy, helping us learn, but also putting their support behind our idea. In some ways, it felt a lot like "The Little Engine That Could" - we just kept chugging along, taking it one step at a time and just making sure we kept going.

The finale event, where the winner will be named, is actually tonight, but regardless of whether we win or lose, I am so glad that we took part in this.

Accessible YOUniverse
It's crazy that a year ago this week, I debuted my idea for Accessible YOUniverse at the Health Activist Expo (read about that here). While I may not have mentioned it in a while, that doesn't mean I have forgotten about it! Over the summer I got official fiscal sponsorship (which means that under a parent organization I can operate as a nonprofit and accept tax-deductible donations, etc.) and have been spending time this month working on getting the website up and running. Hopefully I'll have more news to share about this soon, so stay tuned!

Favorite Purchases
My online shopping may have gotten a little bit out of control this month, and I'm not sure it'll really slow down much in December, as I start to buy holiday gifts! But I did pick up a few things this month that I really love. I love this sweater from Madewell so much that I bought it in another color during the Black Friday sale - it's so soft and comfy. I've switched from makeup brushes to a Beauty Blender recently, and really like the way it makes my makeup look. This gift set comes with two sponges, two cleansers, plus a traveling case - it's an amazing deal. I picked up this blanket from Target on a whim, and it's one of the best impulse purchases that I've made in a very long time.


Fiddler on the Roof
I saw Fiddler in the Roof over the weekend at the Benedum. I always love going to shows, so it was nice to have one to go to over the Thanksgiving holiday weekend, What made it extra special was that the cast dedicated all of their performances while they were here to the Jewish community, after the Tree of Life Synagogue shooting. It's not even "my" community, but it's been so touching to see how Pittsburgh has banded together in support. While the circumstances that brought out the true Pittsburgh spirit were awful, the city really does have something special - we consider fellow Pittsburghers family.
 

Tuesday, November 27, 2018

Giving Tuesday

A lot of days this week are about shopping and buying (Black Friday, Cyber Monday), but today is about giving. Giving Tuesday is a day dedicated to giving what you can, to celebrate that spirit of the holiday season, rather than the receiving.

If you can, giving money to the non-profit of your choice can go far towards helping them fulfill their mission. If you can't, commit to volunteering your time, or help share the causes on social media.

I wanted to share four causes that are important to me - please consider donating to one of these, or to one of your own favorite causes. Don't forget to check if your company will match donations!

Cure SMA
Of course, the first on my list will always be Cure SMA. They're dedicated to supporting individuals and families affected by SMA, and have funded the seed grants for a lot of promising research for SMA treatments and cures. They actually funded the seed grant for what became the first-ever FDA-approved treatment. Obviously, this is a very personal cause for me, and one that I'm more than happy to support

Pittsburgh Symphony Orchestra
I'm on the New Leadership Council of the PSO, which works to get a new, younger audience interested in the symphony and classical music. I think that supporting the arts is SO important. For as analytical as I am, I definitely value the intelligence and creativity that goes into creating music of all kinds. It's harder and harder for the arts to get the public support that they need, which makes me really sad - they're always something worth supporting.

The Dane Foundation
The Dane Foundation is the organization behind Ms. Wheelchair USA. They focus on providing quality of life items - paper products, toiletries, linens, etc. - that often aren't covered by insurance and other organizations. The holidays are a really busy time for them, as they also provide gifts for families affected by disabilities who would otherwise not be able to afford presents.

Community Living and Support Services (CLASS)
CLASS is a local disability and advocacy organization where I serve on the Board of Directors. They're a Pittsburgh institution of sorts - Mr. Rogers would consult with them when talking about disability-related issues on his show! They do really great work, and it's important for me to be connected to the disability community here in Pittsburgh. 


Monday, November 26, 2018

Leather Legging Love

Do you ever think you'll totally hate something, but it ends up that you actually love it? For a solid two years, I absolutely refused to wear maxi dresses... I had no real reason for it, but I just thought that I hated them and they looked childish and I would not wear one. And then I tried one, and couldn't stop buying them.

Leather leggings fall into that exact same category for me. I don't exactly know when it happened, but I've become a leather legging person. They're one of my favorite pieces of clothing now... I actually even own them in multiple colors. If you work in a more casual environment, like I do, I think they can be worn to work, and they are great on the weekend - especially when it's too cold for a skirt/dress.

I wore this to work last week. I love this top with the leather leggings - it makes them look more polished and professional, I think. But if you're looking for something a little more casual, a sweater like this one makes a great outfit, too. And I love the color - it's so different from the normal black that you think of for leather leggings.

My actual leather leggings are sold out (and are also a kids size), but I'm sharing some other options in sizes that more of you will be able to wear in the widget below.

This post uses affiliate links. I may earn a commission from any purchases you make, but my purchases are not sponsored and all opinions are my own.

Friday, November 23, 2018

Friday Favorites

I hope that you all enjoyed your Thanksgiving yesterday! We had a great dinner (well, we eat early, so technically it was lunch), and then I lounged in my PJs for the rest of the evening. We have a pretty big gathering - I think the count was 23 yesterday, plus 3 dogs (including Lily) - so it's great to catch up with family and spend time together.

The rest of my weekend will be a good mix of fun, work, and relaxing! I have some homework to do, but I'm also going to see Fiddler on the Roof, which I'm looking forward to. My middle school music class put on a mini-performance of the show, but I don't actually think that I've ever seen the show itself. Hopefully you all have some fun plans for the rest of the holiday weekend, too, even if they're just to relax and stay in - sometimes those are my favorite kind.

Now, on to my favorites from this week.

Amazon's Black Friday Sale
Did you see my post from earlier this week about the Amazon sale going on today? I love using Alexa to control the things in my house - this is a sale that you definitely don't want to miss.

November #Hamildrop
There's only one more #hamildrop left, in December, so we're coming to the end of me sharing these with you. This one is a really fun look at what Hamilton would sound like as a typical musical, and not the hip-hop version that it is. And of course, it's a treat to see Lin-Manuel step back into the titular role.

Lion King Trailer
It's still more than 6 months away from a release date, but Disney released a minute-long trailer for the new Lion King movie. The cast looks amazing, and I'll see almost anything Disney makes - especially if it's about jungle animals! Really looking forward to this one. 

Eat'n'Park Commercial
I know this post is video heavy, but I had to share. I was watching the Macy's Parade on Thanksgiving morning and saw this iconic (in Pittsburgh, at least) commercial. I saw this every single year as a kid, and to me, it really means the start of the holiday season.

Thursday, November 22, 2018

Happy Thanksgiving 2018


I wanted to pop in today to say Happy Thanksgiving to all of you. Thanksgiving is a holiday of gratefulness, and of giving thanks, so it seemed like the most appropriate day to let you know how grateful I am for all of you.

It's been a real journey writing this blog for the last year and a half now. I really wasn't sure how this would be received when I started writing - I wanted to write something that people with SMA/other disabilities could enjoy and relate to, but also something that people without disabilities could connect to, as well. It's been a bit of an experiment in terms of figuring out what I enjoy writing about and what you enjoy reading about. And of course, it's also been an experiment for me in terms of figuring out how to balance my work, blogging, and my other commitments outside of those things, too.

So I wanted to say thank you to all of you for sticking around and bearing with me as I continue to figure this out. I really love writing here, and have loved connecting with all of you. Happy Thanksgiving - I am so grateful for you!

Wednesday, November 21, 2018

Black Friday Spotlight, Amazon Edition

I'm not going to do a huge Black Friday sales round-up this year - there are so many sales happening, and it's kind of overwhelming. I've never been one to do Black Friday sales in person... it's way too early and crowded, and even the thought of it makes me crazy. I am definitely a fan of online Back Friday sales, though. No need to wake up early, can shop in your PJs - that's much more my thing.

I just want to share one major Black Friday sale with you, because it's such a great deal that I don't think anyone should miss. All of Amazon's Echo devices are on sale, so if you've been thinking about getting one, now is the time to do it.
Clockwise, from top left: Echo Show, Echo Plus, Echo Spot, Echo Dot

I wrote about my Echo here - I have the Echo Spot, and I love it. It has made things so much easier for me - I can control the lights for my room with it, which is huge if you can't reach a normal light switch from your wheelchair! But even if you don't have that particular problem, you can use it to turn off the lights when you're all warm and toasty in bed and don't want to get up to turn the lights off. I also use it to make phone calls, get the news and the weather, and even to do Headspace meditations. Plus, if you're a Prime member (which you probably are, and if you aren't, you should be!) you can listen to music on it, too. If you get one with a screen, you can use it in the kitchen to read recipes off of, and of course, you can set a timer on it, too.

The Echo Spot and the Echo Show are the ones with screens. The Spot, which I have, is perfect as a night table/bedroom device - it's small and sleek, and has a clock/alarm/anything else you'd want in your room. The Show is perfect for the kitchen - it's bigger, so the screen is perfect for recipes or cooking videos.

If you're looking for something with a better speaker, and don't have as much about the screen, go for the Echo Plus. And if you just want something basic, the Echo Dot is a great choice.

This post uses affiliate links. I may earn a commission from any purchases you make, but my purchases are not sponsored and all opinions are my own.

Monday, November 19, 2018

Dick Thornburgh Disability Service Award

I've been loving all of the advocacy and activism work that I've been doing over the last year and a half. "Loving" isn't even exactly the right word - I've become so passionate about it, and I've learned so much, and I've been introduced to so many new people and experiences and opportunities. If you're just a blog reader, it may seem like this is something that I've always done, but in reality, this has been a whole new world to me. I am so incredibly grateful for all of the people who have helped me get immersed into this community, and for the people who have really been my cheerleaders and champions, and who have invited me to groups and places to help me become a part of the conversation surrounding disability and accessibility advocacy.

And while it was never my goal to be recognized for the work that I do, I am truly honored whenever people recognize the work that I am doing. A few weeks ago, I received one such honor - the Dick Thornburgh Disability Service Award. Each year, this award is presented to a student at Pitt who has made a difference in the lives of children and adults with disabilities. The Award was presented during the Thornburgh Family Lecture, where I got to meet Governor and Mrs. Thornburgh and their son. They have been passionate disability advocates for many years, and I was so lucky to have the chance to meet them.

Since it was the Thornburgh Family Lecture, it was also really special to be able to have my family (and friends) be with me to receive the Award! We were all treated to a really interesting lecture about a service dog training program that pairs puppies with inmates at a local prison for the first year and a half of the dog's life. The prisoners do all of the basic obedience training that the dogs require before they can go off to the more "advanced" training kennel for service dogs. It was really touching to hear stories of how much the inmates loved working with their dogs. We got to meet Ella, an incredibly cute service dog-in-training, and see her show off a few tricks, too.

It's always hard to wrap up a post like this one, because everything that I could say sounds really cliche. But truly, I am so grateful and honored to have received this award, and I can only hope that the work I do lives up to the legacy of what the Thornburghs have done.

Friday, November 16, 2018

Friday Favorites

It's really starting to feel like winter... and I can't say I'm ready for it. We had our first real snow today (plus some sleet/freezing rain), and I was not a happy camper. Plus, there are holiday decorations going up all over! I'm just not ready for any of this. I already can't believe Thanksgiving is next week - I seriously do not know how that happened.
Hopefully, this week's favorites are a nice break from thinking about dropping temperatures.

The Watcher
I love long-form journalism, where the writer really has time to dive into a subject and write a really in-depth story. This one is no exception, about a family who bought a house only to receive some really menacing notes. It's a fascinating read - I cannot imagine what I would do if this happened to me.

Broadway stars sing Taylor Swift
I love this song from Reputation, and apparently, so do these two Broadway stars. This cover is SO powerful and beautiful, and a bit haunting. Highly recommend.

About Andy Warhol
Andy Warhol is an icon in general, but he's also a Pittsburgh-er, so we really love him around here. The Warhol Museum is one of my favorites in the city - there's a room with silver "cloud" balloons that you can actually touch and it's really cool. This article is a little look into his life and him as a person, as told by people who knew him.



Wednesday, November 14, 2018

Fall Closet Colors

Last weekend, I did a huge closet clean-out. I didn't quite go through the whole thing, but I made it through about 75% of it, and got rid of so many things that I hadn't worn in years. It felt so good to have so much more room in my closet! I also organized everything by color and sleeve length, and move all of my summery things out so that I had room to actually see the things I could wear. It's amazing... now I just have to make sure I keep up with it, which is always the hardest part.

When I do a closet clean-out like this, it always ends up with me actually buying more clothes! I realize "holes" that exist in my closet (for example... there are a lot of black tops, but a lot less color than I'd like), and I find things that fill in those holes. Or.... sometimes... I just find things I really like and now have room to actually fit them in my closet. Either way, it means that I've been doing some online shopping lately.
I've been looking for things that are professional, but casually so - not preppy or too buttoned up and stiff. Enter Madewell. I was browsing Nordstrom and found a top I really liked, but not in my size. When I saw it was from Madewell, I decided to check their site directly, and was instantly obsessed. It's a J.Crew sister brand, but definitely more relaxed styles than J.Crew.

I love all the jewel-tone colors, and especially love this purpley/maroon wrap top. It's the perfect mix of professional and casual that I was looking for, and I love that the wrap part of the top has a little hook-and-eye to keep it securely closed. I feel like the color is so perfect for fall - I tried to get it with the amazing colors of the leaves changing, but the weather wasn't totally cooperating! I am always into peplum hems, because they give me more room around my feeding tube, and this one hits just right. It's one of my new favorite tops, and I have a few other new Madewell favorites, too - check them out in the widget below.


This post contains affiliate links.

Monday, November 12, 2018

City of Tomorrow Challenge Update

I wrote about my team's proposal for the City of Tomorrow Challenge before, in this post - and I have exciting news to share! Our team was one of 13 to be chosen to move forward as a semi-finalist. This means that we're one step closer to bringing accessible ride-sharing to Pittsburgh. We're really excited, and really passionate about making this happen.

To make sure that our proposal is as complete as possible - and to make sure that it fits what our potential users really want - we need some help. If you live in the Pittsburgh area and have a disability, we want your input! There are a few things that you can do to help:

1. Fill out our survey
Click here to access our survey - it shouldn't take you more than five minutes, but will give us really useful information as we work on our proposal.

2. Tell us about your commute
We want to know about your current commute now - what it's like, what options you have - and if there's anything that would make your commute better. Here's how you can do that:

Click this link below to visit our proposal page. Then scroll down to the comment section, and click the blue button that reads "comment." You'll have to sign in. We'd love to hear things like...

-Paint a story about the value ride-share brings to your daily routine.
-Talk about the barriers you face everyday.
-Have something specific you'd like to us to consider?

3. Share, share, share!
Share this with as many people with disabilities in Pittsburgh as you know! 

Monday, November 5, 2018

Sweater Weather

While it's no secret that I'm not a fan of cooler temperatures, I do love a warm, cozy sweater. There's nothing like wrapping yourself in something comfy on a day when it's cold and windy outside. I'm really picky about how things feel, though - when I'm looking for a comfy sweater, I need it to be soft and not stiff.

I have a few different favorite styles of sweaters, so I've pulled together some options for each type.
Wrap-front Sweater
One, Two, Three, Four
This is my favorite style of sweater. I love the Madewell sweater so much that I included it twice, in two colors (the second and third). It's so incredibly comfortable, and I love how rich the colors are.

Winter White
One, Two, Three
I definitely don't follow the "no white after Labor Day" rule. I think that a white sweater with a dark pair of jeans can look so sleek! I love the bigger turtleneck on the third sweater, and Uniqlo cashmere (the first) is such a great deal.


Open Front Cardigan
One, Two, Three 
I think open front cardigans are a lot more comfortable than the button-up, standard kind - it's almost like wrapping yourself in a nice, warm blanket! These strike a nice balance between looking cute and being cozy.



Friday, November 2, 2018

Friday Favorites

Happy November! I've never been much of a Halloween person, especially as an adult - it's been many years since I've dressed up, and I try to avoid going out on Halloween weekend! However, I do enjoy dressing Lily up. This year, I saw a Minne Mouse costume/harness while we were in Disney over the summer, and I couldn't resist. She's super picky about what kind of costumes/clothes she'll tolerate... nothing is allowed to touch her head, or else she thinks she's frozen and will stay still like a statue until you take it off! I don't understand what she thinks is going to happen, but it is hilarious to watch.

Read on to find out this week's favorites.,,

Tree of Life Victims - How to Help
Pittsburgh is still dealing with the aftermath of the weekend's tragedy, and will be for a long, long time to come - even after media attention is faded. This article lists the different ways you can donate to help families and the Tree of Life Synagogue itself. I urge you to consider donating if you're able.

October #Hamildrop
Would it even be a Friday Favorites post if I didn't include something Hamilton related? We're coming to the end of the monthly #hamildrops - only November and December are left now. But October's, a cut song from the musical, is sung beautifully by Sara Bareilles.

Harry Potter collection at PBteen
Did you know that Pottery Barn Teen has a Harry Potter collection?! I am a huge fan, and while some of the items in the collection are a bit young for me, some are absolutely things I'd love to own! This Deathly Hallows Bluetooth speaker is the perfect subtle nod to the series.

(This post contains affiliate links.)