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.