Monday, March 30, 2020

The New Normal

I decided to take a few weeks off here because it just seemed like things were changing in the world so much, and so quickly, that I needed to take some space and time. But I'm back now!
I can't believe that my last post was about how busy my month was going to be, because just days after I wrote that, everything just kind of... disappeared. No more shows, no more weekends at my leadership program - I even had to miss my friend's bridal shower. I was only two weeks into my new job when we switched into working from home for the foreseeable future.

One of the major impacts that SMA has on my body is a very weak respiratory system - even at my best, my lung capacity is much, much less than someone without SMA. So if I got a severe case of COVID-19, it could be incredibly dangerous for me. Also, studying and working in public health, I understand the scale of the pandemic that we're in. I know how terrible it could be if we don't stay at home, and we overwhelm the healthcare system with cases all at the same time - it could be catastrophic. All of this is to say that I'm taking the current situation incredibly seriously. I'm staying home - we're having all of our groceries delivered, limiting our take-out food, and I've even given up my Starbucks cappuccinos. The farthest that I've gone is for a walk around my neighborhood, where I haven't come less than six feet (really, probably less than ten feet!) from another person outside my family. I think it's really, really important that we all take this seriously NOW, to keep it from being worse later.

In many ways, I'm very lucky. My job is safe, I'm not cramped in a small apartment, I have a yard and a deck to get some fresh air, I'm in self-quarantine with my family and my dog and cats, and I have access to almost every streaming service available (and I've been taking advantage, too). And I have some amazing friends and family who have offered to drop off things that we need.

But it's still weird, and strange, and unsettling, because there's so much uncertainty. Honestly, I don't mind being "cooped up" that much, because I'm cooped up with a lot of space. But there's no way of knowing how long this is going to last. It's strange to think that, for now, this is the new normal. And I think it's okay to take some time to adjust to the new normal, and to allow yourself to take that time.

Wednesday, March 11, 2020

March Madness

I think that part of the reason that January seemed to go so quickly for me is that I knew March was going to be particularly crazy for me. I always have this thing where I see events that I'm really excited for, buy the tickets/commit, and then don't realize what it will do to my schedule! When I enter them all into my Google calendar, though, it becomes clear quickly how packed things actually are.
Now, I'm not complaining - these are all things that I'm excited for! But I think the anticipation, both in a good and bad way, of March made February really seem to fly by. It's here now, though, and I thought I'd share a little peek into my life for the month.

Quick note, though... I wrote this post over the weekend, when I was less nervous about the Coronavirus. Life with SMA means that I have to be more cautious that someone who doesn't live with a condition that affects their lungs. All of this is to say that now, all of my plans are really up in the air. I'm trying to balance living my life with being safe and cautious, and it's a struggle (and very anxiety-inducing, too).

This past weekend was actually one where I had no plans, which I did on purpose once I realized what the rest of my month looked like! Everything really starts this coming weekend, when I have tickets to see the The Band's Visit when the tour makes its stop at The Benedum on the 14th. I have been looking forward to this show since I saw it perform on the Tony Awards a few years ago, so I'm excited that it's finally here. And to close out my weekend, I get to celebrate one of my best friends at her bridal shower! I'm so excited for her and for all things related to her wedding.

The weekend may end, but my plans do not, because I have tickets to go to the Series Announcement from the Cultural Trust on the 16th. This is their annual event where season ticket subscribers are invited to the Benedum, where they announce each show in next year's subscription, usually with some type of little performance, live or recorded, from each show. I went two years ago and it was so much fun, so I'm really looking forward to going back!

This next weekend is when things really start to get hectic. On the 20th, I have tickets to see Mandy Moore!! I have probably watched A Walk to Remember at least 50 times, so I cannot wait to hear her perform live. I have to brush up on her new album before I go, though! On both Saturday and Sunday, all day, I have my training for the New Leaders Council. I've been participating in this since January, one weekend per month, and it's such a great opportunity to grow my leadership skills and meet like-minded, passionate people. I actually have to leave training early on the 21st, because I'm being named as a Distinguished Highlander from my high school at their Gala! It's such an incredible honor, and it will be fun to go back "to my roots."

The final event on my calendar for the month (for now... ) is the MDA of Southwestern PA's Toast to Life Gala on the 26th. I went last year (you can read about it here), and I'm so happy that they invited me back again this year. We were really involved with the MDA when my sister and I were younger, so it's nice to be involved again as adults.

Whew! All in all, one of my busier months, especially knowing that hanging over my head is the fact that I have to finish my essay for my MPH this month. Busy months like this are always a little bit of a mixed bag for me. I'm so excited about all of the fun things that I have planned, but I also know that having SMA means I get tired (physically) easily and I really do need my sleep. So here's to hoping that things go smoothly and it's just the right amount of fun and plans!

Monday, March 9, 2020

Spring Ahead

I know that I'm supposed to be excited about the time change this weekend, because it means more hours of sunlight... but it also means I got one less hour of sleep. And as much as I love the sunshine, I really, really love my sleep. So while I'm looking forward to brighter days, I need a little bit of convincing that I'm actually happy about it. So as usual, I'm turning to my wardrobe! I want allll of the bright things to remind myself that sunnier, brighter days are ahead.

With that in mind, here are some bright things that I have my eye on for the months ahead.
Green Ruffle Wrap Front Dress
I could wear this to work, or to brunch on the weekend. I love the very subtle print, plus the ruffles and the wrap front details.

Red Handkerchief Hem Dress
The hem of this dress is so fun, and the belt adds a little extra something to it, too. It would definitely still work with tights in chillier temperatures.

Pink Pleated Skirt
I'm really into pleated midi skirts right now! I like how this one almost looks striped, depending on how you look at it.

Pink T-Shirt
I'm not usually a t-shirt person, but this looks really cool. They call it reverse printed, and while I'm not exactly sure what that means, I love the end result.

Green Off-the-Shoulder Dress
This is probably the most "me" of all the options. I love the color, I love the off-the-shoulder neckline, I love the eyelet - I just love it all!

Red Linen Dress
I have absolutely nothing like this dress, but I think I like it! It looks so chic and simple, and so perfect for spring.

Friday, March 6, 2020

Friday Favorites

What a week - this one really flew by. I had the chance to attend State Representative Dan Miller's Mental Health and Disability Summit on Tuesday, which was the highlight of my week. Because this year is the 30th anniversary of the signing of the ADA, the Summit was really expanded and was held downtown at the Convention Center. I'm always excited to see so many people gather to discuss mental health and disability issues. I also had the chance to be on a panel that spoke to a large group of high school students from the area, all of whom had disabilities. When I was in high school, I barely knew any other people with disabilities, so giving the students the chance to connect with and see other students with disabilities is just so important. Plus, I got to say hi to a few students from my own high school, which was a trip down memory lane.
This picture is from the legislative panel, where politicians from both sides of the aisle gathered to hear testimony about a number of pre-selected disability and mental health issues. It felt really significant that so many elected officials made the time to be there and learn more.

Okay now that I've run my mouth (fingers?) about that, let's move on to the favorites.

ONE - Love is Blind Reunion
Starting with the silliest - have you been watching Love is Blind on Netflix?! If you have not, you should start immediately - it's great reality TV. And then once you're done, watch the reunion on YouTube! What's crazy is that the show filmed in 2018, so quite a bit of time has passed between the show ending and the reunion.

TWO - Barbie's Dreamhouse is ADA Compliant
This is something that I would have absolutely loved to own when I was growing pup! Mattel is updating their Barbie Dreamhouse, plus their camper, and anything else they decide, so that they're all wheelchair accessible. They even hired a consultant to make sure their designs were ADA compliant. Barbie is such a big brand - this is a huge change for representation of disability!

THREE - Advice from Therapists
Teen Vogue has compiled this great article about the best advice that people have gotten from their therapist. It's really interesting to read the different advice, and also the universality of a lot of it, and then to hear the issues that people are struggling with. So much of it is really relatable.

FOUR - Coronavirus Advice
Some more advice, but slightly more practical this time. A physician shares her best, real-life advice for dealing with the spread of cononavirus - namely, wash your hands and don't buy out all of the masks.

FIVE - Judith Heumann on The Daily Show
I saved the best for last! Judith Heumann, an iconic disability rights advocate, was a guest on The Daily Show with Trevor Noah this week!! This is the first time that I can remember, EVER,  a disability advocate being on a late-night show to talk about their work. It means so much, and I'm so excited to see her being honored for the incredible work that she's done.

Wednesday, March 4, 2020

Ch-ch-changes

I mentioned in my last Friday Favorites post (here) that I was starting a new job this week. Now obviously, it's too soon to actually talk about my new job - I'm still settling in - but this whole thing has made me introspective and nostalgic, in a way, so I wanted to talk about it.
My previous job was my first "real" job ever - my first full-time job after graduating college. That means that I spent almost 10 years in that position! Now, of course, the job responsibilities themselves had shifted and changed and grown over those years, but the people that I was working with stayed largely the same. While my work itself could definitely be challenging, I was mostly comfortable on the whole. Comfortable with my job, with the people I worked with, with what the job would be.

Comfortable can be good, but it's also easy to get stuck, and to be too comfortable. A new job is the absolute opposite. There's absolutely no comfort at all - everything is new, and unknown. And while it's exciting... it's also kind of terrifying. I've only ever worked with one supervisor - I have to learn how a new department works, new responsibilities of a position.... new everything! Everything is so unknown, it's such a giant question mark looming over my head all the time, and it can feel like a lot.

For me, changes, especially big ones like a new job, are always full of excitement but always tinged with a little bit of fear. It can be so hard to push yourself outside of your comfort zone, to be okay living in that fear and that questioning of the unknown for a while until you find your footing again. But I also know that the super cliche statement about the best things lying outside of your comfort zone is one thousand percent true. Obviously, there's something appealing about the comfort zone (hence it being called comfortable...), but I don't want my whole life to just be comfortable. I want to be able to change and grow, and to do that I have to push myself.

A lot of the things that I've done in the last few years have been pushing myself outside of my comfort zone. And I know that I've grown so much during that time - I'm doing things now that I never really even imagined I'd be doing. So now, when I get nervous about a change, as I inevitably do, I remind myself about all the good things that have come from me doing things that I was a little bit afraid of.

I remember reading once that fear and excitement elicit the same biological response - it's the feelings that you associate with that response that makes you feel one vs. the other. You can actually shift your own emotions by focusing on the positives rather than the negatives, and letting the excitement frow over the fear. Isn't that cool??

This time, instead of the fear, I want to choose excitement. So instead of saying that I'm nervous about my new job, I'm going to be excited about the new opportunities that it will bring!

Monday, March 2, 2020

Spring Stripes

Now that it's March, I've decided that I'm going to convince myself that spring is on the way, whether or not that's true. To me, that means no more need to wear tights, no more heavy jackets or layers, and lots of bright colors to make up for the dreary, overcast skies that I've been seeing almost every day.
So naturally, this dress from Banana Republic was right up my alley. It's technically a midi dress, but of course it's a bit longer than a standard midi on me, which I actually really like. I'm obsessed with the colors - they're so bright and vibrant, but not in a young, childish way. I think the colors are actually a tiny bit darker than they appear online, and they just look really good together. Maybe I like it because growing up, I had a pink and purple Barbie wheelchair? But whatever the reason, the colors and the stripes/colorblocking just look really great together.

I also love the material and fit of the dress - it's a sweater dress, but because of the pleats that run all around the dress, it's a little bit stretchy, too. Sometimes, dresses that are just straight/shift dresses don't look good on me because I'm always sitting, but because this one has give to it, it lays perfectly. And it's so comfortable - it's not a "fuzzy" sweater texture, but it's still soft, and has some weight to it, too. I'm wearing the XXS petite size, but it's sold in regular sizes, too.

You know how sometimes you just feel so good in a dress that it makes you feel extra confident? That's what this dress does for me. I'm basically trying to keep myself from wearing it everywhere, all the time. I already have it in mind for a few special events coming up... so don't be surprised if it pops up again!

Oh, and bonus - it's already on sale, and there's an extra 40% off through the end of the day, no promo code needed!

Friday, February 28, 2020

Friday Favorites

HOW is it the end of February?! Usually, even though this month has the shortest number of days, it seems to drag - but this time, I feel like it flew. I kept pretty busy, so maybe that's why it feels like it went faster than usual for me. I'm crossing my fingers that March means that spring weather is on its way, which I'm really ready for.
Lily got a haircut this week - doesn't she look so cute and tiny?! I swear, it always looks like she's lost weight after a haircut because of how much bigger her fur makes her look! Her hair was starting to fall in her eyes, so I'm glad she can see again, even though I'm sure she misses the extra warmth in this cold!

Exciting news - today is the last day of my job! I'm starting a new position at Pitt on Monday, which I'm really looking forward to. I have been in my current job since graduating undergrad, almost ten years ago! So this is really exciting... and a little bit terrifying, too! More to come as I settle in to the new job.

On to the favorites!

ONE - Serena Williams and Fashion Week
I think that Serena Williams is amazing - she is so dedicated and clearly puts her all into everything that she does. I'm just so impressed by her!

TWO - The Man Music Video
I mean... of course I'm including another Taylor Swift link. Her music video for The Man is so good! There are just so many allusions and hints and Easter eggs... and that twist at the end?!

THREE - Adaptive Fashion on Project Runway
I've recently become obsessed with Project Runway - I'm watching the current season, and I've also been binging previous seasons at an alarming rate. In the current season, they just did an episode on adaptive fashion (for Paralympians!), and one of the designers, Nancy, designed an INCREDIBLE dress for a woman in a wheelchair. Obviously, I'm now fully #TeamNancy - she really highlighted and worked with the wheelchair, rather than trying to camouflage it. Seriously, so cool.

FOUR - Gourmet Makes Combos
I'm still watching all of Claire Saffitz's Gourmet Makes series, and still love every single one. Combos were one of my favorite snacks growing up, so this one was especially fun for me. But really, I'm sharing this because of Claire's offhand comment about just loving to be good at things, and I really, REALLY related.

Wednesday, February 26, 2020

Rare Disease Day: SMA Spotlight

Every year at the end of February, I like to do a refresher post on SMA in honor of Rare Disease Day, which is February 29th this year.
Spinal Muscular Atrophy, or SMA, is one of the many rare disease that we recognize as part of Rare Disease Day - there are over 6,000 diseases that are categorized as rare! But SMA is the one that affect my life, so it's the one that I'm going to highlight. I want to just give a little bit of a reminder of what SMA is, and how it affects my life.

SMA is a recessive, genetic disease, which means that both of my parents are carriers, and there is a 1 in 4 chance of any kids they have having SMA. Both my sister and I have SMA, but in some families, some siblings are affected by SMA and others are not - it's just the luck of the genetic draw. SMA also has different "types," which really just indicate the severity of the disease. Both by sister and I are Type II, which is kind of the middle of the road. People with SMA Type I are affected as infants, and people with Type III are usually not diagnosed until later in their lives, as adults. I was diagnosed a little after my first birthday - not an infant, and not an adult.

SMA is also progressive, which means it gets worse over time. When I was younger, I definitely had more arm strength - never a lot, but I could, for example, raise my hand in class. Now, raising my hand over my head is something that I definitely can't do any more. And the rate of progression seems to be pretty variable - there's no way to know when, or how much, my SMA is going to get worse. It seems like it will stabilize for a while, and then slowly get worse... but so slowly that it's not something that I really realize until later.

And of course, having SMA means that I need help. Getting out of bed, using the bathroom, getting in and out of my wheelchair, taking a shower, brushing my hair, brushing my teeth... all things that I need help with. Basically, everything that most of you do without a second thought, I can't do on my own. So my definition of independence is probably a little different than yours!

But all in all, I think what having SMA has taught me is that people are adaptable, and people are resilient. I don't spend my time being sad for myself because I have SMA - it's just my life, and it's the only one I've ever known.

Click here to find out more about Rare Disease Day, and click here to learn more about SMA.

Monday, February 24, 2020

Beauty Buys: Afterglow Lip Balm

I have so many different lipsticks, most of which end up sitting in the drawer of my vanity the vast majority of the time. I like having them for when an outfit calls for just the right shade, but day-to-day, I'm just not really a lipstick person. I don't have the patience for constantly checking if it's on my teeth (it usually is), and doing touch-ups throughout the day.
But that doesn't mean that I don't like a touch of color on my lips, and especially in the winter when my lips are constantly dry, I want something to keep them moisturized. I want the lipstick version of the no-makeup makeup look. And I found it last year when Nars came out with a whole line of Orgasm lip products, including the Afterglow Lip Balm. I've had it in my purse constantly since I bought it, and wear it all the time. It's a really nice pinky-peach shade, and it looks really natural on me.

Sometimes, though, I do want just a little bit more. When I was browsing Sephora's website (which is dangerous!), I saw that they had come out with more colors in the Afterglow Lip Balm that I already love! Because I'm someone who finds something that she likes and sticks with it, I bought not one, but two more shades - Dolce Vita, which is described as a sheer dusty rose, and Turbo, a sheer cherry red.

Honestly, every shade that I've tried is great, and it's taking everything in me not to buy all of them! Now I keep all three options in my bag, with me at all times.

Friday, February 21, 2020

Friday Favorites

This was a fairly routine week for me... nothing too exciting to report! I'm speaking on a panel at a local university tomorrow, which should be fun, and then I have a low-key weekend planned for the rest of the time.
I'm sharing another picture from the museum in this post, because all of the rest of the recent pictures on my camera roll are progress pictures of the issues that I'm having with my feeding tube. Definitely not something that you want to see!

Now, this week's favorites.

ONE - Seth Meyers and the Steelers
This is absolutely not a recent video, but I happened across it on YouTube and knew that I had to share. I am a "bad" Pittsburgher in that I don't particularly care about watching Steelers games, but growing up, the whole family watched every week! The way Seth's dad describes it is so accurate.

TWO - Benefits of Coffee
I am all for any article I find that tells me that my caffeine consumption is good for me! This was a deep dive on the pros and cons of drinking coffee, and it was both fun to read and made me feel like I learned something.

THREE - The Man Live in Paris
Is it even a Friday Favorites post if I don't share new Taylor Swift songs/videos?! I swear I do have interests outside of Taylor Swift and Hamilton, I promise. But the live version of the song really is amazing, and it's such an empowering song.

FOUR - Emily Blunt Interview
Emily Blunt was interviewed in Marie Claire by a kid who is a fellow stutterer, and the article that results is really worth a read. She gives really thoughtful answers, and treats him like an equal, not a child. (Thanks to The Fug Girls for sharing this first!)

FIVE - Behind a Viral Tweet
Having a tweet/blog post/Instagram picture go viral sounds like it's something that would be so cool. But I've never really thought about what happens in your life while it's going viral. This is a first-hand account from someone who did go viral - definitely makes me think twice.


Wednesday, February 19, 2020

A Sunday at the Carnegie

This past weekend was my mom's birthday, and she decided that she wanted to celebrate by going out to brunch at the Carnegie Cafe and then roam the museum. I know that it wasn't my birthday, but honestly, I was really excited for this plan!
I don't make it to the museum nearly as often as I'd like to. It really is the perfect way to spend a Sunday - especially when it's cold and dreary out and all you want is to be inside and warm! I think I tend to take advantage of the fact that the museums are just always there, but every time I'm there I'm impressed again by what a great time I have.
I was especially lucky this time, because there was a National Geographic: 50 Greatest Wildlife Photographs exhibit at the Natural History Museum. Clearly, I am all in for anything involving wildlife photography! I'm sharing just a few of my favorites here, but know that I took pictures of almost every single one of the 50 pictures. It was such a stunning exhibit, and I'm so glad I was able to see it!
And then I also had the chance to browse the Art Museum for a bit, which I don't always make it to. I've seen more of the Natural History side of the museum from their "After Dark" events (when they're open in the evenings for adults only), but usually the Art Museum isn't open for those. Honestly, I could have spent an entire day just going through the galleries, but I did get to see a small selection, both newer and older, of all of the pieces. Again, I'm just sharing a few here, but I took so many more pictures.

It was a great way to spend my Sunday - hopefully I'll spend more days exploring these museums and the other great ones in the city, too.

Monday, February 17, 2020

My Current Wish List

Each year around this time, I get super bored with everything in my closet. I feel like I've been wearing the same things all winter long, and that there's nothing new and exciting in my closet. Basically, I want to buy an entirely new wardrobe.

However, I know that is a bad idea! So instead of buying too many things and spending too much money, I decided to share my current wish list here, first. Maybe this will help me pick just one or two new things to buy, instead of too many new things.
Olive Blazer
I don't have many things this color, but I like how it's neutral but not black/white/brown. I don't wear blazers often because they don't tend to look right on me since I'm always seated, but this one is a cross between a sweater and a blazer, and it seems like it could work.

Colorblocked Bag
If there's something that I definitely do not need, it's another bag. But I just think this one is so cute! I love the mix of colors - it would really go with almost any outfit, but it's still sleek and sophisticated.

Wine Faux Leather Skirt
I actually have this skirt in black, and I'm itching to add it in this gorgeous color, too. Sometimes faux leather can look plastic-y, but this one definitely doesn't. I probably don't need it... but that doesn't mean that I don't want it.

Black and Cream Sweater Skirt
This is probably the item that I want the most from my wish list. I love how comfy sweater skirts are, but it still looks so polished. I just love it!

Red Sweater Dress
I feel like I can never have too many sweater dresses - they're just the perfect winter go-to. I don't have much red at all, so this would be the perfect way to add a little color and spice up my winter wardrobe a bit.

Grey Suede Heels
So I know that for post people, these wouldn't really be "heels," but I can't really wear real high heels, so these seem like they'd work well for me! It's just the right amount of heel, and I love the suede detail.

Black Croc Jacket
Starting and ending my list with a jacket, because I think they're the perfect winter addition to any wardrobe! I think that the croc pattern gives it a little something extra, but it's subtle enough that it would go with so many outfits.


Friday, February 14, 2020

Friday Favorites

Happy Valentine's Day! I am so looking forward to this weekend! I definitely need to catch up on some sleep, and some work, too... but I'm looking forward to the sleep part. This Sunday is also my mom's birthday, so I'm excited to go to brunch and celebrate her, too!
This week has been Feeding Tube Awareness Week - I thought I'd share these two pictures to help you understand what my feeding tube has done for my life. Overall, it's been a really positive thing for me, and I can't imagine not having it. That's not to say it's without issues (I've actually been in to have it looked at more in the last few months than I have the rest of the years that I've had it, combined), but it really did make such a major improvement to my life.

On to this week's (slightly short list of) favorites!

ONE - My PublicSource Article
I wrote another article for PublicSource! This time, I'm talking about the current choice I'm faced with between advancing my career and remaining eligible for services that help me live and get to work. I've talked about it here before, but if you want to learn more, read the article and make sure you click through to sign the United Way survey mentioned in the article!

TWO - Sunday Scaries
I don't love the name "Sunday Scaries," but I definitely understand the feeling the name evokes. This is an interesting look at what might cause it.

THREE - Oscars Rap
This was a fun little skit that the Oscars did - they brought out an actor/freestyle rapper to recap what had happened in the ceremony so far. I loved it! Utkarsh Ambudkar, the actor freestyling, was on The Mindy Project and in the movie Blindspotting (which you should watch if you haven't seen it!), so it was cool to see him pop up on the stage.

FOUR - Jillian Mercado at NY Fashion Week
Jillian Mercado, an actress/model with a disability, walked in a show during New York Fashion Week! It's so amazing to see disability representation on a catwalk, especially for me to see someone using a wheelchair. I loved it!


Wednesday, February 12, 2020

Sending Snail Mail

Friday, February 7, 2020

Friday Favorites

This week was fairly normal... nothing too exciting going on, really! I was reminded, though (by Facebook, of course!), that this week was the 10 year anniversary of Snowmaggedon here in Pittsburgh. There was SO MUCH snow, it was crazy -  I was at CMU at the time, but my mom took this picture of the snow outside our house the next morning. Isn't it wild?! My fingers are majorly crossed that we don't have a repeat of that ANYTIME soon.
This week's favorites coming up!

ONE - Jessica Simpson's Book Excerpt
I didn't really watch Jessica Simpson when she was on Newlyweds with Nick Lachey, but of course I heard about the infamous "is tuna chicken or fish" quote from her show like the rest of the world.  I haven't really been following her life, but the book that she's releasing really looks like a true "open book" look into her life. This excerpt has me wanting to read more!

TWO - Uniqlo On Sale
I think Uniqlo makes the best warm but lightweight winter weather gear. One of their down, ultra-lightweight parkas is $10 off, and it's a great deal while it's still cold out! My mom, my sister, and I all have a coat from Uniqlo.

THREE - Authentic SMA Casting
This video makes me SO HAPPY. I've shared some of Shane's videos before - in this one, he's sharing a casting opportunity for kids with SMA for a pilot being filmed in Chicago. I love hearing about authentic casting - not only does it give an actor with a disability the chance to work, but that authenticity and representation adds such a necessary layer to the performance, too.

FOUR - Dunkaroos Are Back
I know that this article asks why now, but honestly, I don't care! I loved Dunkaroos as a kid - mostly, I loved the icing that you dipped the crackers in, and may have just eaten it with my fingers once or twice. Now that I'm "grown up," I'll do my best to avoid the finger dipping, but I'll definitely still be snacking on these!

FIVE - Adaptive At Aerie
Aerie is now selling a few different types of adaptive clothing! This is incredibly exciting - it's such a move for "normalizing" needing different things like these - especially things like ostomy bags, which are usually hidden. It's also just so much more convenient for people who want to buy adaptive things - we don't need to search through pages of Google results. This makes me feel really proud that American Eagle's headquarters are here in Pittsburgh!

Wednesday, February 5, 2020

Fighting the Winter Blahs

I get into a serious rut each year right around this time. Not only does January feel like it lasts so long (for anyone, not just me), I also just feel incredibly restricted and confined when it's cold out. The cold means that I'm pretty much stuck inside, which just makes things seriously drag. There hasn't been much sun here in Pittsburgh, which just means that every day feels dreary and like I should be warm and cozy at home, reading a really good book!

I also have to be extra careful about avoiding getting sick. I'm not even talking about the coronavirus... just the flu has the potential to put me in the hospital! Some people with SMA have to basically quarantine themselves during flu season; for me, it's finding that balance of going out and staying in, and making the right choice for my body even when it's not necessarily what I want.

After a while, it just starts to feel like a lot of the same old, all the time. Same schedule, same gray skies... I even find myself wearing the same outfits, over and over and over. And then it's a bit of a self-fulfilling prophesy, in a way. Because when I start to feel like I'm in that "blah" rut, it's so easy to just stay in that same routine and not push out.

But I don't want to be in that rut! So I'm trying my best to do little things, where I can, to break out. If it's above freezing, I'll make the short walk to Starbucks just to get out for a minute. I try to make some plans, because my mood feels so much lighter when I'm able to get out and do something! A few weeks ago, I celebrated a friend's birthday with tea at The Frick (one of my absolute favorite things to do), and once we closed down the Frick Cafe (at 4 pm...), we moved to Starbucks and talked for hours, just catching up. We clearly all needed it, because no one was in a hurry to leave! It's the little things that make the biggest difference in my mood when I'm just feeling stuck.
And then, there's the feeling I get from wearing a new, cute outfit. The dress is definitely outside my comfort zone - I don't do a lot of prints, and this print is loud. But I couldn't resist the leopards (not leopard print, but leopards!) scattered across the print. And the colors aren't too crazy, so it was just the right amount of different for me. It's another huge win from eShakti, and the perfect things to push me a little bit outside of my rut. (Don't forget to use the code HEATHERTOMKO if you make a purchase to get 35% off and free customizations!)

Monday, February 3, 2020

Recent Amazon Finds

I feel like I go through phases with Amazon - while there are very few weeks that go by without me buying something (Prime is just so convenient...), but it's often just refills of things that I'm running low on. In the last few weeks, though, I've picked up some fun things that I thought I'd share here. Most of them are just small things, but they're all things that I'm really excited about!
The Best Coffee Cups - Small and Medium
Okay, these cups are basically the whole reason for this post, because I am OBSESSED. I bought the smaller version of these mugs as part of a "Lightning Deal," and then promptly forgot about them. I re-found them and tried them last week, though, and couldn't get over how amazing they are. I love how sleek the glass looks, they're microwave/dishwasher safe, and they are SO lightweight. Most mugs are too heavy for me to lift, but these feel like nothing in my hand. Since I loved the smaller ones so much, I bought the next size up, too. The smaller size just barely fit my double cappuccino, but the "medium" size can fit more liquid.

No-Dent Hair Clips
This isn't nearly as exciting as the mugs, but it's something that I've been meaning to buy for a while! My hair dents super easily - that little crease you get from a hair tie, or even just tucking it behind my ear! These are supposed to keep that line from happening when you use them. It's perfect for when I get a blowout and need to keep my hair out of my face while I'm doing my makeup, or when I'm washing my face and want to keep my hair dry.

Instax Printer
I always wanted one of the Instax cameras, but knew that it would be too heavy for me to hold and that the button would be difficult for me to press. When I found out that they made a printer version that works with an app on your phone to make any of your photos into the Polaroid style, I was instantly sold. It's been so fun to take pictures and print them out - it feels so nostalgic to me!

Pill Case
I was long overdue to buy this... I've been carrying around Ibuprofen in a little Zipoloc bag in my purse! I like that these are flat and don't take up too much room in my bag, and has an easy-to-open swivel part to the lid that also locks into place. Plus, it comes in a pack of two, so I can keep one in my bag and use the other when I travel.

Friday, January 31, 2020

Friday Favorites

I'm really looking forward to February... because I'm looking forward to January being over! Not because it's been awful, but because it has felt SO long. I'm excited for a new month, for a metaphorical turning of the page. Winter is definitely not my favorite, and the end of January feels like one step closer to it being over.
I'm currently writing this while finishing the last episode (ever!) of The Good Place. Before I dive in to the rest of the favorites, I have to say, if you haven't started watching this show yet, you should absolutely start! Okay, now that I've gotten that off my chest - on to the "real" weekly favorites.

ONE - Isabel Allende Interview
Isabel Allende is my absolute favorite author - she writes magical realism (different than Harry Potter type magic), and she is just such a gifted storyteller. She just released a new book, which I'm currently in the middle of, but if you're not familiar with her, this interview is a great intro.

TWO - Crip Camp at Sundance
I already talked about how I'm excited to watch the Taylor Swift documentary that premiered at Sundance, but I'm also very excited about this documentary. It's about a camp for people with disabilities that existed years ago - a place where, at a time when disability was still very stigmatized, people felt like they were truly accepted. It's actually executively produced by the Obamas, and I love that they're putting their "power" behind highlighting stories of people with disabilities.

THREE - Tara and Johnny
I love this video of Tara Lipinski and Johnny Weir re-watching her Olympic-winning routine! It's such a fun, nostalgic look back, and it's fascinating to hear Tara talk about the behind-the-scenes of what it's like to win the Olympics at fifteen (!!) years old.

FOUR - More Inclusive Barbies
I'm just so happy that Barbie is coming out with so many new inclusive versions of the iconic doll. I was such a Barbie fan growing up, and was so obsessed with the dolls and the shoes and the clothes and everything. Even more, the inclusive Barbies are part of the "Fashionista" line - so they're not "different" or "other." It's just so cool and so important for kids - both for the people who are now represented, and for the people who have always been represented but now will be introduced to more diversity.

Wednesday, January 29, 2020

Wheelchair Life Hacks

I posted a picture on Instagram last week, and someone commented asking me where I got my cupholder... which is actually a stroller cupholder that I've repurposed for my chair. So many of the things that I use daily are things like this... things that are repurposed from their actual intended use, or things that I buy specifically to make my life easier.

Since at least one person was curious about my cupholder, I thought that a few more of you might be interested! Even if you're not in the market for wheelchair products, I think it'll still be interesting to learn a little more about the wheelchair life hacks that I've developed over the years.

My Cupholder
Starting with the most obvious, the cupholder. They actually do make wheelchair-specific ones, but I've never liked them - they're plastic, and bulky, and tend to get in the way or everything. This stroller one is perfect. I can slip it right under my seat cushion, and the velcro keeps it in place. Because it's soft-sided, it doesn't get in the way, and it's easy for me to reach my drinks from where I put it on my chair.

USB Heated Wrap
A non-wheelchair using friend suggested that I try this out, so this is a universal suggestion. This wrap is powered by USB and has a heating element inside of it that warms up when turned on - but it's still nice and thin, so I don't feel weighed down by it. The bonus is that my wheelchair has a USB port, so I can take this wrap with me wherever I want!

RAINRAP
I actually saw this a while ago on one of GMA's "Deals and Steals" segments and knew it would be perfect. I can't use an umbrella while I'm also driving my wheelchair, so rain is not fun for me. This is the perfect solution - it's nicer than a poncho, but keeps me dry. Until someone invents an umbrella that is operable from my chair, this is what I'll be using.

Heated Neck Warmer
This one might not seem like a wheelchair hack... until I tell you that I use this heated warmer on my feet, rather than my neck. I am always cold, and my feet are the coldest of all. I have really bad circulation, so it takes forever for my feet to warm up. I was using this heated neck warmer on my back a few weeks ago, and realized that it would also work really well to keep my feet nice and toasty. And it does!


Monday, January 27, 2020

Subtly Pink

I definitely have favorite colors, and they translate to what I wear. I wear a lot of blues and greens - really rich colors - but I don't tend to wear a lot of pink. Maybe it's because growing up, I had a pink and purple Barbie wheelchair, and since I was always surrounded by pink, maybe now I've gone in the opposite direction. Whatever the reason, it's not one of my go-to colors, and I actually only have one or two pink things in my closet.
I got this pink scarf as a Christmas gift, and I wasn't sure what I thought of it at first. But I tried it out and decided that it's just the right about of pink for me. I like that it adds just a splash without being over-the-top. Of course, since I didn't want to stray too far out of my fashion comfort zone, I kept it simple and paired it with an otherwise all black look. I think it keeps it from looking too young and overly girly, which is not my style.

I think this could also make a perfect Valentine's Day look, if you want to celebrate the day in style without wearing something overly pink. The scarf adds just a subtle nod to Valentine's Day, while still being wearable any other day of the year, too. You can click through my scarf and a few other pink options below.

Friday, January 24, 2020

Friday Favorites

I know that I say this every four day week, but it really did feel so long! I have a very low-key weekend planned, and I'm really looking forward to it. I always struggle with finding motivation in January - it's so cold and dreary and snowing and the idea of hibernating just is so appealing!

I don't have much more to share right now, so I'll cut right to the favorites.
ONE - Final Season of Schitt's Creek
Seriously, if you are not watching Schitt's Creek, you should start watching NOW. I'm so sad this is the final season, but glad they're going out on a high. This was a great read about the show and how it's taken until now to really get "popular."

TWO - Leopard Flats
I don't know how many different styles of the same pair of shoes is too many, but I think I might be approaching that limit with these flats! But, of course, I couldn't resist the leopard print of this version.

THREE - Simple Health Advice
I loved this article with advice on being healthy! With so many different diets and so much conflicting advice out there, I truly believe that sometimes, simple is best.

 FOUR - Miss Americana Trailer
I mean, obviously I'm excited for the new Taylor Swift documentary coming out at the end of the month. It looks really raw and honest, and I love behind-the-scenes views.

FIVE - Sinead Burke Interview
I really love the work that Sinead Burke is doing to point out the lack of diversity in fashion when it comes to disability inclusion. This is such a good look at her work, her life, and how she's gotten to where she is.

Monday, January 20, 2020

Weekend Reset

I will be honest - 2020 definitely did not start the way that I expected and hoped that it would! After the nice break from work I had at the end of December, I really came into January with a fresh mindset - I set some goals for the year, and I was feeling good about where I was headed. It felt like such a clean start.
But these past few weeks have been a whole lot of ups and downs. It wasn't all bad - there were some good surprises thrown in there - but it has been anything but smooth. I've had two visits to the ER (don't worry, I'm feeling much better now!), have not been getting enough sleep, and just have generally felt stressed. And then there's the fact that it's January, a month that always seems to drag on for so long, and it's cold and dreary out a lot.

So I decided that this weekend would be the right time for a reset. It seems like things are calming down a bit for me (fingers crossed!) - or if not calming down, exactly, they're a bit more stable, at least. So I wanted to make sure I felt more calmed down, too. Sometimes I feel a lot of pressure on the weekends to be productive - write blog posts, work on my master's essay, work on Accessible YOUniverse planning - that it doesn't feel like I get much of a break. This weekend is a long weekend for me (I'm off today), but instead of putting more pressure on myself to use that time to be productive, I did the opposite.

I celebrated a friend's birthday with a tea service... and then when we all decided to go to Starbucks afterwards and catch up for another four hours, I didn't worry about how long I was out. I watched a lot of TV. I slept in. I did some reading. And when I decided that I wanted to do a little bit of "work" (like writing this post!), it didn't feel forced - I was doing it because I wanted to, not because I felt like I had to.

Taking the time to relax this weekend was so needed, and I'm so glad that I gave myself this chance. I'm hoping that this reset puts the rest of 2020 (or at least, the rest of January!) on stable footing.

Monday, January 13, 2020

A Little R&R

I came into the new year with high hopes for major productivity and lots of goals, and then nothing turned out as planned. In reality, January so far has thrown me lots of curveballs and unexpected detours, and even though my winter "break" wasn't all that long ago, I could really use some R and R.

I'm sure I'm not the only one... I think that after the holidays, everyone feels like they're in a bit of a slump, or a rut, and could use some time to themselves and to take some time to get back into the swing of things. So I'm sharing some of my favorite things to do when I want to relax.

Fuzzy Blanket
Seriously, I cannot tell you how much I appreciate a warm, fuzzy throw. I have way more throws than places to actually "throw" them. But there's no relaxing for me without being wrapped in soft, cozy warmth. This blanket seems like it would do just the trick.

A Good Book
Getting lost in a good book is the ultimate relaxation to me. It's perfect for when you don't have anywhere to be, and you can just fully immerse yourself into a story. This memoir by Julie Andrews is next up on my reading list.

Cup of Coffee
I know that people drink coffee to stay awake, and I am fully addicted to caffeine, but I also just love to sip at a cappuccino while I'm lounging around. These cute glass double-walled cups are perfect for that.

Face Mask
Maybe it's just me, but doing a face mask just seems so pampering - and as an added bonus, your skin looks and feels better after you've taken the time for yourself. I tried this mask by Drunk Elephant at the end of last year, and was really impressed by how well it worked!

Good Music
I'll often have the TV on "in the background," but I'm trying to get away from mindlessly watching. Listening to music is equally, if not more, relaxing, and you can either play the music in the background or go all out and have a personal karaoke show - whatever your prefer. I got an Echo Show 8 last year, and the speakers are pretty decent. I use it all the time as a speaker - I can even pair it with my phone to listen to my own music.

What's your go-to R and R method?

Wednesday, January 8, 2020

Organizing Update: Using my iPad as a Digital Planner

I mentioned that one of my goals this year was to feel like I'm more on top of things. By the end of last year, I kept feeling like I was always two steps behind... like I was letting things slip through the cracks, and that I just didn't feel like I was making progress on anything because there were always more things to be done.
This isn't exactly a simple goal, and there's not one quick fix to it. It's going to take continued time and effort throughout the whole year. But one thing that I wanted to change was my planner system/to-do list. I changed from a paper planner to using my iPad as a digital to-do list plus Google Calendar a year or so ago, and I like the digital way of doing things, but it needed a little bit of fine-tuning. I missed seeing my week laid out in planner style, as great as Google Calendar was for more long term tracking. So I wanted to find an in-between solution.

I was updating my resume last year (I hadn't done a real overhaul since graduating college, and a lot has changed since then!), and I bought a template for my new resume from Etsy. I don't have the graphic design skills to make things look polished, and Etsy has so many options of things that look polished and professional. So after that success, I decided to look for a digital planner template on Etsy, too.

I'm kind of picky when it comes to planner formats, even if they are digital. I don't like monthly or daily views - I just want to see the whole week at a time. I want the week to start on a Monday, and I want the blocks for weekend days to be the same amount of space as weekdays. It's a bonus if there's space for a to-do list, too, on the same page as the week itself, so that I can dot things down as they come up.

After lots and lots of searching, I found this template, and it's perfect. It has everything on my "wish list," and it works with Good Notes, which is the app that I was already using for list making. It was super easy to download and start using - there wasn't really any set up involved at all. It's been great in keeping track of my weeks, and I love that I can "erase" things digitally when plans change - the perfectionist in me always hated having things crossed out when they were cancelled!

My fingers are crossed that this helps me feel a little more in control of my day-to-day, and helps keep me productive and on-task, too. I just feel so much calmer and more relaxed when I'm on top of my schedule!


Monday, January 6, 2020

What I've Been Reading

I got a LOT of reading done in December, and it's what encouraged me to make it a goal in 2020 to read more consistently. Especially with books that I really love - they just stick with me for a long time after I read them, and it's just like listening to a really great song. They get under my skin in a way that TV shows and movies usually don't!
Know My Name by Chanel Miller
This is an incredible book, and one that's so important to read. Chanel Miller was the victim in the sexual assault trial against Brock Turner, the Stanford student. She was Jane Doe through the years of the trial, but now she's ready to speak out and ready for people to "know her name." It's tough to read, but not because it's graphic - it's just a really good look at the frustrations that she went through during the long trial process.

Once Upon A River: A Novel by Diane Setterfield
I started this one and then had a long pause before I finished it, and it took me some time to get back into the story. I love books with intertwining stories, and this one definitely had that, but I think that it could have moved a tiny bit faster. It had a bit of magical realism, which is one of my favorite genres, so I loved that aspect of it.

Royal Holiday by Jasmine Guillory
This was such a fun read for over the holidays. It follows the mom of a stylist who gets invited to go to England over the holidays to style the Duchess of Sussex. Of course, romance ensues, and we get a fun look at British royal holiday traditions, too.


The Proposal by Jasmine Guillory
After I read Royal Holiday, I wanted another light, fun read by the same author. This book starts out with a massively botched public proposal (don't worry, this isn't a spoiler), and then the relationships that follow.

The Starless Sea by Erin Morganstern
This book is my other favorite of this bunch, along with Say My Name. It's magical realism, and at its core, it's a story about stories. It's so beautifully written, and I can't wait to read it again. It's by the same author of The Night Circus, and I was afraid this wouldn't live up to how much I loved that book, but I think it may have exceeded it! It's an incredibly intricate story and I highly recommend it.


The Seven Husbands of Evelyn Hugo by Taylor Jenkins Reid
This story follows the life of Evelyn Hugo, a fictional Hollywood star, as she grants an interview after decades of silence. It sounds like a light read, but the ending is kind of dark... I didn't see it coming! I still enjoyed it, though.


The Gifted School by Bruce Holsinger
I picked this up after I saw that Carly read it, and it was a good read. It follows a few different families in Colorado who are all vying to get their children in to a new school being built in the area. It has lots of characters and plot lines to keep track of, so make sure to pay attention as you read.

For Better and Worse by Margot Hunt
This is a thriller about a couple and their relationship - I don't want to say more about the plot so that I don't spoil it. It wasn't my favorite of the bunch - it dealt with some heavy topics (child abuse) and I thought that the thriller wasn't as thriller-y as I was hoping for.

Sometimes I Lie by Alice Feeney
Another thriller! I read this one after a friend recommended it to me, and I think that I enjoyed it, but I'm still wrapping my head around it a bit. It was confusing in that you're constantly trying to figure out what's true and what's not... it's also a very ambiguous ending, which I did not love. But my friend is right in that it's a book you want to discuss with someone as soon as you're finished reading it!

Ask Again, Yes by Mary Beth Keane
This book was kind of slow at the start, but then it picked up. It follows two neighboring families throughout their lives, which are irrevocably intertwined. It wasn't a light or happy read, but it was good.

The Girl Who Chased the Moon by Sarah Addison Allen
This was another magical realism book, and while I liked it a lot, I thought that it was kind of thin and ended abruptly. I thought that we were just getting to the good part, but it was actually just done. I wanted more story, and also more explanation of the story that had already happened. 

Friday, January 3, 2020

Friday Favorites

Today's post is a short one, because I've only had a two day work week and I've been trying to not mindlessly surf the Internet while I was on break! It feels weird to go back for such a short week, but the break was so needed. I really think I was running on fumes by the end of the year (which is probably why I ended up sick).
I couldn't resist sharing this picture of Lily - she loved having people around all day over the holidays, and was so confused when we went back to work... it clearly shows on her face.

This week's favorites...

ONE - Taylor Swift's Diary of a Song
I love learning about the process behind writing music, I think partially because it's something that I just can't imagine doing. Coming up with the right words and notes to connect with people and make them feel the way that you're feeling just seems so powerful! Lover is just such an honest song, and it's really interesting to learn how it came to be.

TWO - Charlotte Tilbury's Pillow Talk
I think I picked this up at the end of the year, when Sephora had some holiday promotion going, because I'd heard/read that it's the perfect neutral, no lipstick-lipstick. I don't know if it looks like I'm not wearing lipstick, but it does look natural and doesn't look bad when it starts to wear off.

THREE - Bon Appetit Chef Makes Dog Food
I've shared some of the other Bon Appetit videos before (I've shared at least one of the Gourmet Makes videos if not more), but I don't think that I've shared this series before. This one stars an adorable dog, though, so of course I had to share!

Wednesday, January 1, 2020

2020 Goals

I've mentioned before that I'm not really one for New Years resolutions... but this is the beginning of a decade, and that just makes it seem like so much more of a big deal. It seems like a real opportunity to make some changes and improvements, and I want to take advantage of that feeling. So I'm going to set three goals (not resolutions!) for 2020.
ONE - Read More Consistently
I fall into the trap of feeling like I'm "too busy" to read, and putting on something mindless to watch instead. But I definitely read more overall this past year than I have in the last few, so now in 2020 I want to make it more of a consistent habit. 

TWO - Stay On Track
By the end of 2019, I felt a little bit like I was spinning out of control. It just felt like I couldn't keep up, like every time I accomplished something I just added five more things to my list to do. I don't want to feel like that in 2020! So I want to start the year by getting back on track, and then I want to maintain that.

THREE - Send More Snail Mail
There's just something about a handwritten letter/note/postcard that feels so personal! I know I'm so excited to get something in the mail that's from a person and not a business. So in 2020, I want to send more handwritten mail.