Thursday, February 28, 2019

SMA Stripes - Rare Diseases Day 2019

Some of you may know this already, but I have Spinal Muscular Atrophy (SMA). SMA is classified as a "rare disease," which means that it affects fewer than 200,000 in the US at any time. Today, February 28, is Rare Disease Day - a day that celebrates and brings attention to those affected by a rare disease.
I haven't written about SMA specifically for a while, and I thought that today would be a great day for a refresher post about me and my life! SMA is a genetic (recessive), progressive neuromuscular condition. Both my parents are carriers for the gene that causes SMA, but neither knew it - there was no family history of it. My sister and I both have SMA, and we both have Type II, which means childhood-onset. Type I is the most severe, and usually diagnosed as an infant. I was diagnosed right around 1 year old, because my parents noticed that I wasn't crawling. Progressive means that it will get worse over time, but it's a bit of a murky thing... it's not really known when the losses will happen, or how much will be lost at any time.

I got my first wheelchair when I was three years old, and it was a pink and purple Mattel-branded Barbie wheelchair. I loved it, and for many years I was known as "the girl in the Barbie wheelchair!" I eventually graduated to a more grown-up wheelchair, though, and it's crazy to me how much technology has changed since my Barbie wheelchair days. My chair now has a USB charger where I can charge my phone, and tells me what speed I'm going and how many miles I've driven! It also costs as much as a nice car.

Having SMA means that I need help with a lot of things in my day-to-day life. My whole "morning routine" relies on someone else helping me get out of bed, use the bathroom, take a shower, get dressed - luckily I can still do my own make-up and blow dry my own hair right now, because that would add another layer to my morning.

I still maintain my independence where I can, though. Even the little things feel really important when you rely on others for so much! I go to work every day (although I do need to be driven there), and spend a lot of my time just like anyone else - going to dinner with friends, binging Netflix shows, or making one-too-many Starbucks runs during the work day. 

I don't like to compare my life to people without SMA, really, because it's hard for me to compare to something I've never known. SMA affects my life a lot, but it's still the only life that I've ever known, and I'm happy with my life! I do wish it were easier for me to do things, and for me to be independent, but I don't spend my time dwelling on that.

I'm so excited to be able to share awareness of SMA with this SMA Stripes campaign on Rare Disease Day! I'd love for you to join me - it's easy! You can access the custom filter on Facebook by:

  1. Start a story on Facebook
  2. Click on the “😊” to find and select the SMA Stripes filter
  3. Take a photo / video using the SMA Stripes filter
  4. Save the photo, or share to your news feed/as a story

Tuesday, February 26, 2019

Introducing Accessible YOUniverse

I realize that calling this an introduction is a little confusing, because I've mentioned it a few times, months ago. If you don't know what Accessible YOUniverse is, it's an disability and accessibility advocacy/education organization that I founded last year. It came out of my Health Activist Fellowship with the Jewish Healthcare Foundation - you can read more about it here.
While I may not have been talking about it recently, that doesn't mean that nothing has been happening! I've been hard at work behind the scenes making progress and moving forward, and I'm very excited to announce a few things.

First - my website - click here! It's a bit of a work in progress, but I'm really proud that it's officially LIVE. I may still talk about Accessible YOUniverse here, but please do check out my website and sign up to the e-mail list so that I can keep you up-to-date on all of the happenings.

Secondly - Accessible YOUniverse will be joining with The Dane Foundation to hold a summit this summer! We'll be bringing together community advocates, city officials, and business owners to discuss the current state of accessibility and disability issues in Pittsburgh. We'll be talking about successes, failures, and what to prioritize as we move forward. I'm really excited to be hosting this, and hope that you are, too. If you're interested in taking part, please send me an e-mail at

I've been looking forward to sharing this news for a while, and I'm so happy that it's out in the open. I've been wanting to hold this summit for quite a while now, but I definitely wouldn't have been able to do any of this without your support! I'm so grateful for all of you following along with me and my journey.

Programming note - this week, I'll be posting on Thursday (instead of Wednesday) for Rare Diseases Day.

Monday, February 25, 2019

Spotlight on Everlane

I've talked about this a bit before, but finding clothes that fit me is hard. I'm incredibly petite - I can often fit into kids clothes, but there's only so many styles of kids clothes I can find that don't look like I'm wearing kids clothes. And since people regularly think I'm about 10 years younger than I actually am, I tend to be even more careful about it!

There are a few stores that have petite sections - J.Crew has one, and so do Banana Republic, Loft, and ASOS. But even then, sizing can be so inconsistent. A Petite XXS in one top might fit me perfectly, and then might be huge and boxy in another top from the same exact store. And even with things that "fit" me, I often have to safety pin together in the back because my shoulders are so narrow that the neckline just keeps slipping off!
I'm always on the lookout for a new place to shop for things that can actually fit me. Earlier this winter, I was looking to buy a a few new cashmere sweaters, and Everlane had sent me a promo code for $30 off anything on their website. It brought the sweater I had my eye on down to $70, which is pretty reasonable for cashmere, so I decided to go for it, and ordered the XXS (they don't sell petites). When it arrived and I tried it on, I was honestly shocked - it fit me perfectly, and it didn't even need to be safety pinned behind my neck - I only have a handful of tops that fit me that well!

So of course, I've since added just a few Everlane sweaters to my collection. Another cashmere, but also a wool-blend and two of their new cotton crews. You've seen a few of them before in pictures, but I really love them and wanted to dedicate a whole post to it so I could talk about them and their fit. I also think the quality is great - the cashmere is super soft and warm, and the cotton sweaters feel a little bit stretchy and really comfortable. They're not too thin or cheap-feeling.

This post isn't sponsored/paid for by Everlane, but if you want to buy something from them, I'd love for you to use my referral code here.

Friday, February 22, 2019

Friday Favorites

February usually feels like it drags to me, but this month seems like it is flying by. I can't believe we're already nearing the end of the month! Things are ramping up with my class - I have a midterm this week, and a paper due not long after. And my weekends have been pretty full, too! But I'm hoping that the sooner February comes and goes, the sooner spring will arrive. We had another snowstorm on Wednesday, and I am truly ready to say goodbye to winter.

This week's favorites are short, but hopefully still sweet.
ONE - #SephoraSquad Testimonials
I so appreciate everyone who has submitted one so far! If you don't know what I'm talking about, read my post here, and click here to leave me a testimonial.

TWO - Squirmy and Grubs on the Today Show
I've posted about this couple before - Shane has SMA like me. They were recently featured on the Today Show, which is so cool!! Check out their interview.

I love cashmere in all forms in the winter, and since I hate wearing jackets, cashmere wraps are my go-to. They add an extra layer of warmth, and also can dress up or dress down with whatever you're wearing. This one is on sale at Nordstrom Rack, and it's a great deal!

FOUR - The Umbrella Academy
This is a new Netflix show. It's based on a comic book, so I didn't really think it would be my thing, but I ended up loving it and binging the whole thing in two days. It's more about family relationships than the superpowers themselves. Highly recommend!
umbrella academy

Wednesday, February 20, 2019

Why I Want to be Part of the #SephoraSquad

Last week, I applied to be part of a new program that Sephora is starting - the #SephoraSquad. For those selected, it's a year-long contract to work with Sephora, which is a HUGE deal. Applications are currently open for anyone to apply - and their site emphasizes that they're looking for a diverse set of applicants, including disabilities, which is so exciting to see.
I've written quite a few times about how important it is to have representation of people with disabilities in all areas of life. In some ways, makeup has always been a sort of "equalizer" for me. When I was growing up, having sleepovers and makeovers were things that I could do with my friends - me being in a wheelchair didn't get in the way of that. It was a way for me to feel less different.

And then, as I got older and started to notice how often people stared at me because of my wheelchair, it helped me to feel more confident and accepted. If people were going to stare at me, I wanted to make sure they didn't think I was just a little girl in a wheelchair. Wearing makeup gave me confidence, and helped me to feel that though people might first stare because of my wheelchair, it wouldn't be the only thing that they'd remember about me. It gave me hope that people saw things about me that they saw in anyone else.

But - that doesn't mean that my experiences with makeup are exactly the same as someone without a disability. I pick my makeup products not only based on colors and prices, but also on how easily I think it'll be for me to open a lipstick tube, or how hard it would be/how long it would take for me to blend a product into my skin. These are real, logistical considerations that I have to take into account each time I look for a new product.

This is why I think it's so important for someone with a disability to be part of the #SephoraSquad, and why I think it should be me. I love makeup and skincare, but I have a unique view that I would love to help people understand. And to do this, I need your help.

As part of the application process, we're asked to get testimonials from people who know us/follow along with our lives. I would be so thankful and honored if you would write one for me - they're very brief! Please click here and fill out the form - I'd really appreciate it!

Tuesday, February 19, 2019

Drunk Elephant Skincare Review

Up until about five years ago or so, my skincare routine was basically nonexistent. I would wash my face, put on a prescription acne cream from my dermatologist, and then start my makeup - that was it. It was definitely quicker than my current routine, but it wasn't great for my skin. The prescription cream kept the big breakouts at bay, but I'd still get smaller breakouts, and the texture of my skin overall was just not great.

The beginnings of my routine started when I read about how important it was to wear sunscreen on your face every single day. So that meant I had to find a moisturizer with sunscreen. From there, I learned about toners and exfoliants... and things just snowballed.
Recently, Sephora revamped their Beauty Insider program, and introduced a way to redeem points for a Sephora gift card. I rarely redeem my points for the sample-sized products, so I had a decent stockpile, and was quick enough to be able to cash in my points for gift cards. I knew immediately that I wanted to use them to buy some Drunk Elephant products. I've been wanting to try out Drunk Elephant for a while now. I love the philosophy behind their products - they are careful to exclude a lot of harmful ingredients, like alcohol and fragrance, and focus on making products that are actually effective. And you can tell!

I have been using three of their products for a few weeks now - I wanted to make sure that I let enough time pass before I wrote about them. I'm currently using the T.L.C. Framboos Glycolic Night Serum, the C-Firma Day Serum, and the B-Hydra Intensive Hydration Serum.

The T.L.C. Night Serum is an exfoliant, but it's interesting in that it's a mix of BHAs and AHAs. In general, BHAs go deeper into the skin and exfoliate under the surface, while AHAs exfoliate the top layer of your skin. I've used BHAs for a while now, but I've been wanting to add an AHA, too, and I love this mix. One pump is enough for your whole face, and it feels really nice on your skin. If you're not used to exfoliants, you're recommended to start by using this every few nights, but I've been using it nightly with no problems at all.

Technically, the B-Hydra Serum isn't a moisturizer, but since I have super oily skin, it's enough moisture for me. I use it at night after the T.L.C., just to make sure the exfoliant doesn't end up drying out my skin. It's an incredibly lightweight texture, and it doesn't feel heavy or greasy at all.

The C-Firma Day Serum is a Vitamin C serum, which is supposed to have lots of benefits for your skin. For me, I was most excited for its benefits in helping lighten dark spots on the skin - like the kind that get leftover after acne scars. The texture of this one is a little tricky for me - it doesn't feel like it ever fully dries down, but when I layer my moisturizer/sunscreen on top of it, I don't have to worry about that. I do think it's helping to fade my dark spots, though, and it also just makes my skin look good - kind of glowy, but not greasy.

I will definitely be repurchasing these when I run out. I know they're pricey, but I love how they feel on my skin and how well they work! I think it's really important to focus on skincare - it's so cliche, but I do think I look and feel better when I'm taking care of my skin.

This post is not sponsored, but it does contain affiliate links and I may earn a commission for any purchases you make.

Monday, February 18, 2019

Mixing and Matching

This weekend was my mom's birthday, and we went out to dinner at Or, The Whale to celebrate. We'd been meaning to go check it out for a while now - it's a seafood and steak restaurant in the Distrikt Hotel downtown. In the summer, we tend to eat outside, so even though we don't love the cold weather, it was the perfect time to try out the restaurant. It was definitely worth the wait and the trip. I had a delicious lamb shank that was fall-off-the-bone tender, and a side of risotto, which is my favorite.
I wanted to dress up a little bit in honor of the birthday celebrations, but it was so cold! I decided to do a little bit of mixing and matching - something dressy with something a little more casual and warm. And I also pulled out one of my favorite mix-and-match combinations - black and navy.
This navy dress is one that I've had in my closet for a while now - I actually also own it in cream/white. I love the subtle polka dots, and how floaty and flouncy the different layers of the dress are. Plus, the straps are actually ribbon ties, which means that it fits me perfectly. It works year round, too - it looks great with bare legs in the summer, but also works with tights in the winter.

To add a little edge (and warmth!) I added this drape front leather jacket. I think it adds the perfect touch to the outfit, and amps up the black and navy combination, too. It's a nice alternative to always wearing a cardigan in the winter - it just gives your outfit a while different look. I'm not really an edgy person, but I think this jacket adds just a touch of edge, and some sophistication, too.

The dress is a few years old now, but this chiffon dress from J.Crew has the same flounce and ruffles that I love about mine - and this version of it even has the polka dots. Best part - both are 40% off through the end of the day! If you're looking for the navy and black combination, check out this navy and polka-dotted dress from ModCloth.

You can find all of my outfit choices in the widget below:

This post contains affiliate links; I may earn a commission from any purchases you make.

Friday, February 15, 2019

Friday Favorites

I hope you all had a happy Valentine's Day! This week was really packed for me - work was busy, and I have a few projects outside of work that I've been working on, too. This just means that I'm looking forward to the weekend even more than usual. This Saturday is my mom's birthday, and I'm really excited to go out to dinner to celebrate! We have plans to go to Or, the Whale, which I've been meaning to go to for about a year now, so I can't wait.
My favorites from this week:

ONE - Barbie Diversity
I love this so much because I loved Barbies growing up. Our playroom was actually called "The Barbie Room" because we played Barbies there more than we did anything else. I actually had a Barbie in a wheelchair growing up, but she was made differently and didn't really fit a lot of the regular Barbie accessories - and really, my favorite part was always picking the clothes and shoes out for her to wear. I'm so happy that Barbie is becoming more diverse, and hope the options for disabled Barbies continue to expand!

TWO - NYC Subway Accessibility
This is a great synopsis of the current issues with the NYC subway in terms of accessibility. When I visit the city, I try to avoid riding the subway if at all possible for this exact reason. I end up having to ride way, way out of my way just to find the next accessible stop. It's disappointing, because the subway has the potential to make the city more accessible for people with disabilities, but it's not working at all.

THREE - Mascara Primer
I kind of always thought mascara primer was just a scam, but I picked this one up on a whim when I was picking up another tube of this mascara (my favorite!). I have never been more wrong with an assumption! My eyelashes have never looked better, and I'm actually putting on less mascara now. I love it.

FOUR - Convicted felon turned law graduate
I thought this was a really interesting story. If prison is intended to rehabilitate people, what happens once they're out? How fully do we really let them re-enter society? Definitely gives you a lot of things to think about.

FIVE - Women in Coding
This made me think of the movie "Hidden Figures," which I saw and LOVED. As an engineering student at CMU, I can definitely attest to the fact that most computer science students were male. It's weird to think that it used to be a female-dominated profession, and I really hope more women start studying computer science again!

This post contains affiliate links; I may earn a small commission for any purchases you make.

Wednesday, February 13, 2019

Using my iPad as a Student

I know I've written about my iPad before - using it to read, and using it in class - but I feel like this semester I've really gotten the hang of the best way for me to use it. In past semesters, I've just used it as a mini version of a laptop, basically - I've used the bluetooth keyboard case that I have and typed my notes. But I really learn best by handwriting things, not typing them. So this time around, I decided to try a different approach.
When I bought my iPad, the employee at the Apple store told me about the app Nebo. There are a ton of note-taking apps out there, but this one takes what you write by hand with the Apple Pencil and translates it into typed text that you can turn into a Word document, a PDF - whatever you want. This has been life-changing for me this semester. I've been able to take handwritten notes, plus draw images/figures (which I could never do when I typed my notes), and then turn them into Word documents. For me, carrying around an iPad is so much easier than a notebook - it gets heavy for me really quickly, and having to flip it over to turn the pages is a struggle for me, especially to do quickly enough to keep up with note-taking. I'm only taking one class this semester, but the app lets you create multiple digital notebooks, so you can create a separate one for each class and keep things separate and organized.

I'm really impressed with the app's ability to "read" the Pencil notes, too. I don't always have the neatest handwriting, especially when I'm writing quickly and my hands can get tired. The app hasn't had any issues deciphering my writing. There's a bit of a learning curve to figure out the different styles in the app - headings, bold, bullets, etc. - but they are fairly straightforward, and they give you a tutorial of sorts to walk through when you start using the app, and you can go back and reference that whenever you want.

I can really tell a difference between notes that I type, and notes that I write by hand (even digitally "write") - I'm just more engaged and more likely to remember things that I actually write down. Maybe it's because I grew up taking handwritten notes (I didn't have a laptop until I went to college), but it's definitely my learning style.

Since this class is open book/open note, I've been able to create a master outline/study guide, combing the notes I take during class and convert to a Word document, and the notes from the Powerpoint slides that the professors post. It's been a huge time saver - in the past, I'd have to create my master outline from scratch. I wish I had been using this for more of my graduate school career, but I'm glad I have my method down now.

Tuesday, February 12, 2019

Galentine's Day Celebration

One of my friends moved back to Pittsburgh a few months ago, and had us over to her apartment over the weekend for a girls night. Since we were so close to Valentine's Day, I thought it would be cute to turn it into a little bit of a Galentine's celebration. In my mind, there's no better way to celebrate that (or really, any holiday!) with some macarons and a little bit of bubbly. Plus, my sister hand-lettered these Galentine's Day cards - aren't they the prettiest?!
The macarons are from my absolute favorite French bakery in Pittsburgh, Gaby et Jules. I think they make the best macarons in the city, and always have a great selection of flavors. They also make some incredible French desserts - their Opera cake is equal parts beautiful and delicious.

I know that Galentine's Day is a super trendy thing to do right now (it's very Instagrammable!) but I actually really love the idea of celebrating friendships around Valentine's Day. Maybe I'm saying this because I'm single and so my friendships ARE the relationship in my life, but I don't think that's it. I've always really cared about my friendships, and as I get older, I've only started caring more. I think it's so important to surround yourself with quality friends - friends who will be there for you and support you. This has been a big year for me, and it's meant a lot to have friends by my side, either virtually or in person, to cheer me on and encourage my the whole way. We hear so much about female friends being competitive and passive aggressive, but I haven't found that to be the case at all. My friends have been the opposite - always cheering on my successes, not trying to one-up them.

We put a lot of emphasis on celebrating the romantic relationships in our lives, but often, it's our friends who are some of our longest relationships! I love the idea of taking Galentine's Day to celebrate the love of our friends, and to tell them how important they are. I really think that's important in a friendship - to recognize and appreciate your friends. So if we need to create an Instagram holiday to make that popular, I'm all in.

Monday, February 11, 2019

Junior Achievement Inspiring Success Awards

On Friday, I had the incredible honor of being named a finalist for an Inspiring Success Award given out by Junior Achievement.
This was the second year for the award/luncheon, organized by the Junior Achievement Young Professionals Board, and it was such an incredible event. There are so many amazing young professionals in Pittsburgh working hard to make an impact and affect change on their community - I love that Junior Achievement recognizes that and wants to highlight it, and could not feel happier to be included in that group. I think that my favorite part of the day was the focus on helping each other achieve our goals. Even though there was a winner from each category, and people could have been really competitive, that couldn't have been further from what actually happened - everyone was so willing to offer their help to the other finalists.
Top: Madewell, similar here
Skirt: J.Crew, similar here
Bag: Mateo New York, here
This next part is going to sound a little superficial, especially after the sincerity of the last paragraph, but once I found out that I had been chosen as a finalist, I immediately started figuring out what I wanted to wear. I realize that I might sound like being vain, but I think that everyone feels more confident when they're wearing something that they love. I wanted something appropriate for the occasion, but not boring, either - so of course, I turned to something leather.

I had been searching for a leather midi skirt for a year now, and ended up lucking out and finding one on sale at J.Crew. It's basically sold out now, but this one from ASOS is pretty similar! I paired it with one of my favorite Madewell blouses (that I shared in this post) - it's sold out now, too, but you can find it in a really pretty starry pattern here. I already know that I'll be wearing this skirt a lot - I can't wait for the weather to warm up so I can wear it without tights!

This post contains affiliate links; I may earn a commission from any purchases you make.

Friday, February 8, 2019

Friday Favorites

For as slowly as January seemed to go, I still kind of can't believe that we're already a month into 2019. I think (hope!) this month will go pretty quickly for me - my calendar is starting to fill up, so I'm hoping that I'm able to keep some down time in there, too.

I think this week's collection for Friday Favorites is a first for me, in that they're all related to disability or inclusion in some way. I didn't plan it, but I'm not complaining, either! I'm actually really excited and encouraged that without even trying, I was able to find so many great videos/articles on those topics. It means they're becoming more mainstream!
ONE - Squirmy and Grubs YouTube Channel
I love sharing things that I find about other people with SMA, and this video is one of them. It's a channel by a couple - Shane has SMA, and Hannah is his girlfriend - basically just chronicling their lives. Some are more specifically SMA-related, some are not, but they're always fun to watch. They recently hit a subscriber milestone on their channel, so major congrats to them!

TWO - New Emoji
Who doesn't love a good emoji?! I'm SO excited that people with disabilities are getting more emoji options to choose from - right now, the only one I really have is the universal blue "handicapped" sign. I'm really glad they have options for a manual AND power wheelchair, plus options for other kinds of disabilities, too.

THREE - Aerie Real Campaign
American Eagle has a huge corporate office here in Pittsburgh, so I love anytime I see them doing work to further diversity and inclusion in the news. Their newest group of "Aerie Real" models has not one, but TWO people with a disability in it, and one of them is Molly Burke (who I talked about in this post). I really love the work that Aerie is doing to promote a message of acceptance for all bodies.

FOUR - Microsoft Super Bowl Ad
Full disclosure - I did not watch the Super Bowl, but I heard this ad aired and have seen it all over the Internet ever since. When I was in college, we actually bought a Nintendo Wii because the controller/games were more disability-friendly than most other systems. This commercial is not only incredibly sweet, but also shows how important it is to include ALL types of users in design.

Wednesday, February 6, 2019

Pat McGrath Labs Lip Gloss Lust

I have a bit of an addiction to buying lip glosses and lipsticks.... most of which do not actually get a lot of wear. Growing up, every beauty magazine that I ever read told me that a dash of mascara and a coat of lipstick would make me feel more polished and put together.

In reality, I love how the lipstick looks for the first 20 minutes after I put it on, but then it starts to wear off, or my lips start to feel dry, and I don't remember to reapply it as often as I should. Lip glosses are a lot less high maintenance, and so they're what I tend to reach for first. For a big night out, I'll reach for a lipstick with a bit more punch, but for daily wear, I definitely go for the gloss.
When I'm wearing a lip gloss, I don't want anything crazy - I'm looking for a little bit of color and shine, but nothing too dark or pigmented. I recently discovered these Pat McGrath lip glosses from Sephora, and I'm hooked. There's a great color selection, and they feel really nice when you're wearing them - they're not too sticky. I also really love the packaging they come in - the gold sequins are so fun! But be careful when you're opening them or else you'll end up with little sequins everywhere.

You can get a full-size one (here), or a limited edition trio of mini ones (here). I have the "skin show-warm" mini trio and the colors are great. When I want something a little bit brighter, but still not too shocking, I go for "Twilo." And if you are a lipstick person, I've actually tried out this mini matte lipstick trio (here), and they're surprisingly non-drying for matte lipsticks!

This post contains affiliate links; I may earn a commission from purchases you make.

Tuesday, February 5, 2019

Sharing My Life on the Internet

My life honestly gets pretty boring in the winter. I've mentioned this a few times, but the cold weather and the snow makes it hard for me to go out a lot. I'm basically always cold, and having to wear layer on layer of clothes can make it hard for me to move around. You add snow plowed into the ramp curb cuts to the mix, and it's really a total recipe for disaster. So a lot of my life in the winter is work, school, home, repeat. I'm lucky if I make it to the Starbucks that's 1.5 blocks from my office on a good day. (Of course, the day I took these pictures it was sunny and warm and gorgeous, but most days have NOT been like this.)

When my life feels this boring on a day-to-day basis, sometimes I feel like I have absolutely nothing to write about. Obviously, that's not actually the case - but it did get me thinking about what and how much I share here.

I try to be pretty transparent when I write my posts. I have love sharing things about having SMA and using a wheelchair in addition to the style and beauty posts, and talk about the intersections between all of these different topics. But I do think there's such a thing as oversharing here. I don't think you guys want to hear the minute-to-minute details of every day in my life (especially when I just told you how boring it can get). And I also don't want this space to become too negative. While I'm happy to share the realities of living with a disability, I think there's already a lot out there about the negatives and hard parts of it. In general, people's first response to someone living with a disability is sympathy, or saying how sorry they are, or how impressed they are that the person is thriving. It's certainly true that there are a lot of hard parts of having a disability - sometimes my attendants have to cancel, I have to rely on people for help a lot, and the logistics of planning out every day can just be challenging. I think it's a really fine line between realistically sharing what my life is like, and reinforcing the stereotype that my life is sad because I use a wheelchair.

It's felt like more things than normal have been going wrong for me lately - not health wise, but just with other things related to my disability. That's why I'm thinking about this more, and also adds to me feeling like I have nothing to write. It's hard to come up with topics I'm spending time and energy just figuring out the logistics of my day. But writing here also has been a really great exercise for me - I've been able to advocate and share my interests, and when I want to, take a bit of a break from thinking about some of the stressful parts of my life.

I guess I'd like to end this post with a question to you all. I've been writing for over a year and a half now, and I'm feeling like I'm starting to get my content and topics figured out. But I'd love to hear about what you most enjoy reading - do you want more disability-related posts? Is the balance good as it is? Anything in particular you've been hoping that I'd write about? You can comment on this post, or if you want to share more privately, send me an e-mail at

Monday, February 4, 2019

Wrap Dress for Winter

I get into such a rut getting dressed in the winter. I generally wear some version of a sweater with jeans/leggings/leather leggings over and over and over. I'm lucky that my work doesn't really have any sort of dress code - jeans are completely fine. Especially since it's been so incredibly cold here lately, I just want to be warm and comfortable.

I had a baby shower to go to this weekend, though, and wanted to step it up a notch. Sometimes it feels nice to have a reason to look a little bit more polished, and it gives me an excuse to try to step out of my rut a little bit. Whenever I'm feeling like I have nothing to wear (this happens a lot) for something like this, I go for one of my favorite standbys - a wrap dress.
They're my go-to for a couple of reasons. The first is fit: They're the most comfortable to wear with my feeding tube, and they don't have any awkward seams that hit me in weird places. It's actually been surprising to me how many dress styles don't work with my feeding tube! But other than my own personal dressing complications, I also think that wrap dresses just work for so many different kinds of occasions. They dress up or down really well, and they are such a classic - they never go out of style. I like knowing that my wrap dresses can do double duty - I can wear them to work or to something like a bridal shower.

The dress I'm wearing is a few years old from Banana Republic - I actually love it so much that I have the same style in three different colors/patterns (when I find something I love, I stick with it!). But I pulled together some other great wrap dresses below.

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Friday, February 1, 2019

Friday Favorites

You guys, it has been SO COLD this week, I cannot handle it. If January didn't already feel long enough, these days of -20 degree windchill make it seem so much longer. I am really ready for it to be over! But today is officially February 1, and we're officially one month closer to spring.

The sub-zero temperatures caused me to pull out this favorite "sweater blanket" dress from last year! It is one of the warmest and coziest things that I own. When I added these Plush fleece-lined thigh highs, I wasn't warm, per say, but I wasn't an icicle either!
Lots of favorites to share with you this week:

ONE - Disability Representation, One and Two
After my post on Monday (here), I just wanted to share two articles about disability representation in the media. The first is the exciting announcement that there is a new scholarship at Yale for people with disabilities, and it's been awarded for the first time. The other is about Jameela Jamil (who I love from "The Good Place," and how she refused to play a role of a Deaf character because it should go to a Deaf actress. Both steps in the right direction!

TWO - Measles in Washington
My usual reminder to get ALL of your vaccines, not just the flu shot. There's a state of emergency currently in Washington state because enough people refused vaccinations for their children that the "herd immunity" level is low enough for measles to spread. This is sad, dangerous, and avoidable!

THREE - The Fyre Festival Documentaries
I actually watched these a week or two ago, and can't believe I forgot to share! Have you watched the Fyre Festival documentaries on Hulu and Netflix? The Hulu one was my favorite, though both were good - it's just crazy to see how far things went and how incredibly poorly it went down and was handled.

FOUR - Disability Inclusion in Business
I love the work that this woman is doing to increase disability representation for people in the workforce. Currently, only about 20% of people with disabilities are employed, which is just so low! I like that she's pushing the leaders of the organizations to work on this issue, because there's really no "wrong" angle to attack this from.

FIVE - Buzzfeed Quizzes
Buzzfeed went through a major round of layoffs earlier this week, which is why this is coming to light now - a teen from Michigan was the second-highest driver of quiz traffic WORLDWIDE. That's just so crazy to me - I was doing a lot in high school, but definitely nothing at that level.