Wednesday, September 18, 2019

Needing Help

I've been thinking about writing this post for a while, but I wasn't sure whether or not I actually wanted to post it. I share a lot about living with a disability, but this is a bit more of a peek behind the curtain of some of the day-to-day struggles. It's something that I'm currently dealing with, and I decided that it's important enough that I can't not write about it.
I've mentioned before that I have caregivers/aides that help me when I'm at home. Things like getting out of bed, showering, using the bathroom, getting dressed... these are all things that I can't do alone, so I rely on other people's help. I've mostly adjusted to the psychological aspect of needing help with a lot of basic needs, which is a whole other thing, but I don't think you ever really adjust to the logistical aspect. The fact that if someone has to call off for whatever reason, you're suddenly scrambling to find a replacement so you're not just stuck.

In an ideal world, there would be layers of built-in backups, and I'd never have to actually worry about not having anyone. The real world, however, doesn't exactly work that way. Finding caregivers is HARD. It's a really multilayered issue - caregivers are drastically underpaid (it's basically considered "unskilled" work), which results in lots of turnover. Agencies that hire these caregivers are so desperate to hire that there's often very little done, personality wise, to screen to make sure they're actually a good fit for the job, and even less to make sure they're a good fit for any particular person in need of care.

This is all one thing to hear in theory, but it's really really stressful and frustrating when it plays out in real life. My normal caregiver is on maternity leave right now, and it's been a real struggle as the agency I use tries to find someone to replace her. There are so few caregivers available that I don't really have the luxury of saying no to someone who isn't really a good fit for my needs - I'm forced to make the decision between not-great care and no care at all, which really isn't a choice. I even have the "benefit" of living at home, which means my parents are available to act as caregivers, too - for people living alone, there are even less choices available.

When you're not used to dealing with things like this, it can be hard to understand the impact it can have on your life. It adds SUCH layer of underlying stress to everything else already going on. I think it's one of the aspects of disability that doesn't get talked about as much, partially because not everyone needs help, but also partially because it's largely unseen - a lot of it happens at home, not in public.

And while I was writing this post and getting ready to publish it, I had a caregiver call off about 2 hours before she was scheduled to be here, which means there is a very low chance of them finding a replacement. So much hinges on the schedule running smoothly, and when it's so easily thrown out of whack it has a major impact. But life doesn't stop just because a caregiver can't make it, and it's that underlying stress that can make everything else already going on in the day that much more difficult.

Monday, September 16, 2019

Target's 20th Anniversary Collection

I can distinctly remember when Target announced their first designer collaboration collection. I was already a Target fan (who isn't, really), but the concept of a special collection just felt so exclusive. Now, I can't say that I remember if I bought anything from that particular collection, but they've had many throughout the years and I still felt the same excitement each time I bought something - it was like owning a little piece of (shopping) history.
It doesn't seem possible, but it's somehow the 20th anniversary of their first designer collection. To celebrate, they're releasing a limited selection of pieces from all of the collections that they've done over the years. As with the original collections themselves, things are selling out quickly, but there are still a lot of great things left! I picked up this leopard drawstring bag and this cute giraffe bottle opener, but there are so many other great things, too! Scroll through below to check out my favorites, and let me know what your picks are!

Friday, September 13, 2019

Friday Favorites

This has been quite the week. It's not even that anything in particular is going on, it's just one of those weeks where everything seems to drag and I feel like I'm constantly treading water. My fingers are crossed for a relaxing weekend - or at least a weekend where I have some time to relax in addition to cross off some things from my ever-growing to do list!
ONE - Representation Burnout
I really relate to this one - the concept that it can be exhausting to constantly be representing a diverse viewpoint somewhere. It's like you always have to be "on," and it can get really tiring.

TWO - Cashmere Wrap
It's no secret that I'm into wraps and capes. They're especially perfect as it starts to cool off a bit in fall, and you're not sure when you'll need to throw on another layer. This one looks so soft, and is an extra 30% off if you use the code SHOPNOW. I ordered it myself and can't wait for it to arrive!

THREE - Toxic Friendships
Unless you follow a lot of Instagram influencers, you might not be up on the drama going on surrounding one influencer, Caroline Calloway, and her once-ghostwriter, who just published an essay on their time working together. Even if you don't care at all about anything from that last sentence, the essay is a really insightful look at toxic friendships, and how something that seemed so amazing and consuming can go so wrong.

FOUR - For the Love of Men by Liz Plank
I've written about Liz Plank before - she has done some great coverage on myriad issues, and always makes sure to include disability when talking about diversity and society. She has a new book out about masculinity, and I can't wait to read it!

FIVE - Rain by Ben Platt
I love Ben Platt's voice - he sings so many different genres so effortlessly. This new song and video are so great - I will be listening a few (hundred) times this weekend.

Wednesday, September 11, 2019

Madewell Insiders Sale

Today is the last day of the Madewell Insiders sale, and it's definitely worth checking out. It's free to become an Insider - you just have to sign up! - and at a minimum, it gets you free shipping and returns (the rewards vary based on how much you spend). Plus, the sale items are ANOTHER 40% off, which is a great deal.

 I only discovered Madewell a year ago or so, but I've already added quite a few of their things to my closet! I've gathered some of my favorites from the sale below - some things that I own, and some on my wish list.

I own this first red/orange dress in the widget below! I love it and think it'll transition well to fall, especially if you throw a leather jacket over it. There are some dresses with fun details and textures - I love the ruffle strap, and velvet dresses are so nostalgically 90s to me, in the best way.

If you're looking for something a little more fall-like, check out these cozy sweaters. I love the autumn colors, and they look so fuzzy and comfy. Plus, there's cashmere in the sale - never hurts to add to your cashmere collection, in my opinion!

If you're not ready to admit that sweater season is approaching, there's lots of other cute tops to choose from. The tiered sleeve top is basically just the shirt version of the dress in the picture above, so obviously I'm a fan. And I can never say no to ruffles and peplums - it adds the perfect touch.

Monday, September 9, 2019

Turning 31

The first year of my 30s is officially over. It feels really strange to type that, because I don't think that I necessarily feel like I'm in my 30s. It's not that I'm super young-at-heart - I'm more of an old soul than anything else - but I remember 30 seeming SO grown-up when I was younger.
I still feel in so many ways that I'm still learning and growing and figuring out where I want my life to go. I feel very confident about myself as a person, and who I am, but where I'm going? That's still a bit blurrier. One of my friends has three questions she asks people each year at their birthday: What was one thing from the past year you hope to never do again, what was your favorite thing from the past year, and what's one thing you definitely want to do in the next year?

I came up with answers for the first two, but the third one really stumped me. I realized that I don't really have anything concrete in mind for the next year. I think the past year has been so big for me that I've been so focused on short-term planning - this weekend, next week, next month - that I haven't really had a lot of time or energy to focus on the longer term.

My year as Ms. Wheelchair USA was incredible in many ways - it helped me to make so many connections, which brought me to some really exciting opportunities. But knowing this was a year-long reign, my attention was highly focused on that year and that timeframe. Now, I have a little bit of luxury to look farther ahead. Where do I really want to go with all of the work that I've been doing? Where do I want it to take me?

So while I didn't come up with an answer when she asked me during dinner, I think I have an answer for my friend now. In the next year, I want to figure out what exactly it is I want to be doing after this year is over... or at least have a better idea. I'm excited to do some long-term, big-picture planning.

Friday, September 6, 2019

Friday Favorites

Why do short weeks always feel so long? Maybe in this case, it's because I'm looking forward to my birthday this weekend! Even though it's not a big one like 30 was last year, I'm still looking forward to celebrating. I also had a really fun week - I went to a scavenger hunt at the local library. We weren't really sure what to expect, but we ended up having a blast. Even though we didn't win, it was so fun and we are already looking forward to the next one.
This week's favorites...

ONE - Lizzie McGuire Reboot
I loved watching Lizzie McGuire growing up. I watched the show, saw the movie, had the soundtrack... could probably still sing every word to "What Dreams Are Made Of" (Hey now, hey now...). I am so excited for this reboot! I know there's still no release date, and not a whole lot of information, but I still can't wait.

TWO - Pointy Toe Flats
I bought these flats earlier this summer and have been wearing them basically nonstop. I love how comfortable they are, and the pointy toe plus the metallic makes them a bit dressier. They're on major sale right now, too!

THREE - Paper Rings
It's probably no surprise that I've been listening to Taylor Swift's new album Lover basically nonstop, but I especially cannot get this song out of my head. It's so fun and upbeat, I just can't help singing along!

Wednesday, September 4, 2019

Life Lately

August has FLOWN. I seriously feel like I blinked and missed it - I can't believe that it's already September... and almost my birthday! Because I traveled so much this summer (relatively "so much," for me) it almost feels like I didn't actually get a break. So much of my time was spent packing or unpacking, gearing up for one trip or winding down from the next. Hopefully, September ushers in a little more down time for me - my fingers are crossed.

It's kind of weird, because as much as I feel like I've had SO MUCH going on, when I sat down to write this, I felt like I had to wrack my brains to figure out what exactly it is that I've been up to. I did have one unexpected ER visit (don't worry, all is well now!)... but I'm not dwelling on that.
Over Labor Day, I went to Easton to celebrate a friend's wedding. We stayed at an INCREDIBLE hotel, the Grand Eastonian - it was so amazingly spacious and open!  I will say - we did get a room with a roll in shower (a single room, and the only room in the whole hotel with a roll in shower), but we also got the adjoining two bedroom suite, because it would have been impossible for the four of us to fit in a single room. The upside of that, clearly, is the space that we had - traveling with two people who use wheelchairs can make it a bit difficult to navigate tight spaces, and we had absolutely no issues here. The pictures really don't do it justice!
Lily has come with us on almost every trip we've taken this summer. It's been a definite process, because she doesn't love the car and can get a little anxious the first few hours (or sometimes, day or so) after we arrive and she does NOT want to be left alone. She's gotten so much better, though, and in each hotel she finds a "spot" - this time it was on a pillow we had put on the floor for her to use as a step onto the couch!
The wedding itself was so beautiful, and I was so happy to be able to be there to celebrate them. It was at a winery that used to be a silk mill, and the venue was so unique and fun - I want to go back to see what it's like when it's not an event space! The whole town, really, was fun to explore - lots of little restaurants and cafes popping up. It's also just across the river from New Jersey (literally... I made us walk across the bridge just so that we could say we left the state)!

I also started classes again, hopefully for the final time in my graduate career! I'll still have to do my essay before I officially graduate, but this should be the last of my classes. It has been SUCH a long journey getting to this point, and I'm so happy to have made it this far and to be this close. Here's to hoping that this final semester of classes goes smoothly!