Monday, August 31, 2020

Self Care Right Now

I know it's a phrase that we keep hearing over and over right now, but it really is an unprecedented time. It can be a struggle - it feels like there are so many ups and downs, and it's hard to find any sense of normalcy or balance. But it's increasingly clear, for a while now, that since it doesn't look like we're going to return to "normal" life anytime soon, it's important that we take care of ourselves the best that we can.

 This post couldn't have come at a better time for me... I had to take time off last week because I was dealing with some health issues (which are mostly resolved now, don't worry). But it was the reminder that I needed to make sure I'm being more aware of everything I'm talking about today.

Self care, and finding that balance, is a constant work in progress - which is exactly what I was reminded of over this past week! Even though I'm still completely at home, it doesn't necessarily mean that I'm more focused on self-care. Sometimes, it feels like I have to be more conscious about taking care of myself right now that I do during normal times. So here's what I've been making sure to be conscious of.

Getting Enough Sleep
In college, I survived on very little sleep, and it almost became a bragging point of sorts - talking about how few hours of sleep we'd gotten the night before. After college, though, I realized how completely unhealthy that mindset is. I absolutely feel better and function better when I've slept well! I know that with everything going on right now, people's anxiety may be extra-high, and it can be hard to actually fall asleep. I have been relying on Headspace's "Goodnight" meditation - it seriously puts me to sleep like a baby!

Getting Fresh Air
I am extremely, extremely grateful to have a yard and a deck where I can spend time outside without having to worry about keeping a 6-foot distance from other people, because being outside is one of the most important things keeping my balanced right now. Even just spending 10 or 15 minutes outside makes me feel physically calmer and happier. I'm a little nervous about not being able to get outside time once the temperature starts to drop, but I'm trying to focus on enjoying it now.


Finding Work-Life Balance
For those of us that are working at home, it can be hard to find the balance of work and life because we're never really physically out of the office. There have been a few times where I've found myself working past my normal hours, but I've tried to keep it pretty separated - it helps me from feeling burnt out. I've had to find the best way to work at home without feeling like I'm constantly on. For me, it means having a dedicated work space that's not the desk in my bedroom, and realizing that work will still be there tomorrow - I don't need to finish things just because I can.


Enjoying "Me Time"
This is the "life" side of the work-life balance. Whether it's watching TV, reading a book, or playing a video game, make sure you make time to do something fun that you enjoy. It's such a stress-reliever, and really helps me feel more calm and balanced.


Taking Breaks
I saved the best for last! This past week has reminded me how important it is to know when to just take a break. Whether it's a break from work or a break from social media, recognizing when you need to take a break and then actually taking it can keep you from getting exhausted and burned out. You don't have to be productive all the time.

Thursday, August 20, 2020

A Few More Nordstrom Anniversary Sale Picks

 If you, like me, just got access to the Nordstrom Anniversary Sale yesterday, you might have found that a lot of items were already out of stock. I went through the sale and picked a few of my favorites from what's left.

Wednesday, August 19, 2020

SMA Awareness Month: Other SMA Advocates You Should Follow

For the third post in my SMA Awareness Month series (see the first here, and the second here), I wanted to share some other SMA advocates for you to follow! Obviously, there are (many) others, but these are a few people that I follow and learn from.

Honestly, one of the best parts about social media, for me, has been connecting me to the SMA community. I was lucky that I always had my sister to talk with and share experiences (and you can follow her here), but it has been SO incredible to connect with other people with SMA, too. To talk about shared experiences, to commiserate, and also to learn clever tricks to navigate a world that's not always very accessible.

Here are some of my favorite SMA follows...


Image via Instagram

Shane Burcaw and Hannah Aylward (Squirmy and Grubs)
It's possible that you already know about Shane and Hannah from their YouTube channel Squirmy & Grubs, but if you don't follow them yet, you absolutely should. They share openly about their lives - about the relationship, about Shane's SMA, and about their adorable dog Chloe. I love how real they are, but how fun they are, too!


Image via Instagram

Alice Wong
Alice is such an incredible advocate for all things disability, and she is so purposefully intersectional in her work. She has edited two books (Resistance and Hope and Disability Visibility), is a podcast host, and was recently recognized as an activist by British Vogue! Her website is here if you want to learn more about all of the incredible things she has done. She's someone I definitely look up to and strive to emulate in my advocacy work.


Image via Instagram

Alyssa Silva
Alyssa and I share a love of coffee, so we quickly became friends on social media. She shares so beautifully about what her life is like with SMA, and has run a non-profit that raises money for SMA research for years and years (Working on Walking). They actually have a virtual trivia event coming up on Monday evening that I'm super excited for - join us here!

Tuesday, August 18, 2020

Recent Round-Up

 I've been trying to cut back on my online shopping lately, but I've still made some purchases here and there. Here are some things that I've bought recently and love!


ONE - A Gorgeous Bouquet
My sister and I got these flowers for my parents for their anniversary. They are so beautiful and they really held up well for days after they were delivered. There's something so nice about having fresh flowers in the house! (Click here to get 30% off your first order!)

TWO - Extra Strength Hair Ties
I have had my hair up so much more often these past few months, and I was going through my old go-to hair ties so quickly, because my hair is so thick. These look kind of strange, but they really hold my hair up well and they leave less of a crease than the standard ones do.

THREE - Vitamin C Serum
I have tried so many different vitamin c treatments, trying to find one that wasn't too thick, oily, or heavy, and didn't break me out. This is my favorite of all that I've tried, by far. It's super lightweight, not sticky at all, and doesn't turn my hands orange after I use it. Just make sure that you keep the bottle tightly closed so that it doesn't oxidize too quickly.

FOUR - Tinted Gel Moisturizer
In my quest for finding the perfect slightly tinted moisturizer, I found this one from Bare Minerals. I love that it's not a heavy moisturizer, and I can just use my hands to apply it, but it still gives me some coverage/evening out of my skin. Sometimes I mix it with the Supergoop Glow Screen, and they work really well together!

FIVE - Gel Face Wash
This is a nice, simple gel face wash from Drunk Elephant. It doesn't strip my skin, rinses off really nicely, and leaves my skin feeling nice and clean. I use it with my Foreo Luna mini and really feel like my face has been "behaving."

SIX - Towel Scrunchie
I use this after the shower to help absorb some of the wetness so that it doesn't take as long to dry on it's own. It doesn't get all the water out, of course, but it makes a noticeable difference. It's totally soaked once I take it out, so make sure you wash it frequently or it starts to get that mildew-y smell.

Monday, August 17, 2020

No More School

 For the last few years, this would have been the time of year where I start getting ready for the upcoming semester. I would have been checking (and double-checking, and triple-checking) my schedule, making sure I bought the books I needed, and looking through the syllabus to take a look at what the next few months of my life would be like. Even though I was only a part-time student, each new semester, but especially the fall semester, still felt like a new, fresh start.

But now that I've graduated (see this post), there's no more new semester. It's strange, though because it doesn't really... feel any different? Time just feels so odd for me right now - not only is it hard for me to imagine that it would be time for a new semester, it's even harder to imagine that I won't be starting one!

Part of it is probably that my graduation doesn't really feel real, either. I did officially get my diploma in the mail a few weeks ago, so I know that it actually did happen, but I haven't had a moment yet where it has hit me that it happened. As excited as I was to finish my masters - and believe me, I was VERY excited - it doesn't feel exactly like I thought it would.

And knowing that I'm done with school doesn't feel like I thought it would, either. I was really looking forward to the extra free time, the ability to enjoy summer weekends and really relax, to never having to balance having lots of fun plans with leaving time for my assignments... and then all of that just kind of went away.

So, basically, nothing feels like I expected it to! It's just one more thing to adjust to turning out differently this year. In the scheme of everything going on, believe me, I know that this isn't a big deal. I still think it's okay, though, to acknowledge disappointment - to take a moment to acknowledge that basically, nothing this year has gone the way that I thought it would. Everything is relative - I hate when people act like there's some sort of competition, like there's some sort of judgments being made about what kinds of things people are "allowed" to be upset about. 

There is no normal this year, really. So allow yourself to be disappointed about things that didn't go as planned. If you don't take the time to sit with it, and to acknowledge it, it makes it so much harder to let it go and move on from it.

I guess this post is just a bit of a brain-dump - and I think I'm also starting to sound a lot like a Headspace meditation! But I think that everyone can use the reminder right now that it's okay to be upset or disappointed or even just feel different than you expected to. There's so much going on! Take some time to feel your feelings if that's what you need - there's really no right or wrong way to deal with things right now.

Friday, August 14, 2020

Friday Favorites

Another week down. I'm feeling a little bit burnt out, I think - I've taken a few days off work here and there throughout the summer, but haven't had a concentrated break like I normally would. It's also feeling really weird to spend the entire summer without traveling anywhere. Last year, I think I went on 4 or 5 different trips... that was a lot for me, but usually I go somewhere at least once! I should mention - I do think that there are safe ways to travel right now, and my family and I thought about trying to go somewhere nearby, but it's a lot of logistical work that just doesn't seem worth it/feasible for us. 

Anyway - just another week in the pandemic. Now, onto this week's favorites.


ONE - Disney debuts adaptive costumes
This is something that I really wish was around when I was younger! Disney has released a whole line of adaptive costumes that I would have loved to wear for Halloween. My mom used to sew our Halloween costumes (I was many different Disney princesses!) and this probably would have been a bit easier. Plus, I could have turned my wheelchair into a carriage! Love.    

TWO - Dolly Parton for Billboard
Dolly Parton's interview in Billboard is just fantastic. I don't know a lot of her music, actually, but I want to listen to more after reading this! She seems like a phenomenal businesswoman and a genuinely good person. "I would never dream of hurting anybody on purpose," she says in the article. If only more people thought like that!

THREE - Sephora sale
Starting today (use code WELCOME BACK), Sephora has a sale going on with $15 off $75 or $20 off $100. It's the perfect opportunity to stock up on the basics, or treat yourself with something fun. I recommend this Drunk Elephant face wash, this deodorant I raved about in this post, or this lip gloss for something fun. 

FOUR - Satisfied x Helpless
Obviously, when I saw this Hamilton video of Helpless and Satisfied side-by-side, I knew that I had to share! It's so fun to watch the same moments play out in the different songs. So impressive!

Wednesday, August 12, 2020

SMA Awareness Month: A New Treatment

 Last week was a very exciting one within the SMA community. The FDA approved Evrysdi (or risdiplam, the name used during development), the third ever treatment for SMA.

Before this past week, there were two existing treatments - Avexis and Spinraza. I'm not going to go into too much detail about either, because I'm not an expert and I don't want to say something that's actually wrong, but I can explain a little bit about each. Avexis is actually gene therapy, and it's the closest thing to a "cure" that there is. It's relatively new, incredibly expensive, and because it's gene therapy, it can only be used on children under two years old. 

Spinraza is able to be used by all ages, and all types of SMA (see my first post for more information on types), but it's administered intrathecally, meaning a spinal injection. This is not easy for anyone, but is even more difficult for people with SMA, many of whom have had spinal fusion surgery as a teen to correct scoliosis. So while Spinraza is approved for adults, not all are able to easily get it because of the complication created by spinal rods. With Spinraza, there's also no guarantee that you'll gain any strength back - it's intended to stop or slow progression. So the younger you start it, the better. There are some side effects, too - one of which is a spinal headache, which can be pretty debilitating while it lasts.

I had an additional complication in that my neurologist decided that she just... wasn't going to dose adults with Spinraza, period. It was an incredibly frustrating decision, and one that I still don't agree with. But when we heard that risdiplam was on the horizon, we decided to wait and see what would happen with that before we decided how to appeal her Spinraza decision.

So the news on Friday was incredibly welcome. Like Spinraza, Evrysdi isn't a cure, and while some people do see improvements, the goal is to slow or stop progression. Unlike Spinraza, though, it's not given through a spinal injection - it's an oral, liquid medication that you can take at home. Not only is it more convenient, but it makes it so much more likely that I'll be able to get it! And it's been approved for anyone over two months old.

I know that there's no guarantee that I'll have any improvements from Evrysdi, but honestly, knowing that I won't get worse is hugely important to me. SMA is progressive, but it happens in fits and starts, so I don't necessarily notice that I've lost strength until months or years later. And there's no way of knowing when it's going to happen, either. So having the peace of mind to not have to worry about what strength I'm going to lose next year, in five years, in 10 years... that's really important to me. I've come to accept that I'll never be fully independent, but that doesn't mean that I don't want to hold on fiercely to shreds of independence where I can. Evrysdi would help me do that!

I'm sure it'll be weeks (or even months) before I know what the next steps are. But I'm feeling hopeful, and that's a really big thing right now.

Tuesday, August 11, 2020

Nordstrom Sale Picks

 It's that time of the year again - the Nordstrom Anniversary Sale. Depending on your cardholder status, you may have already gotten access to the sale. I can't shop it until the 19th, but I'm busy adding things to my wish list so I can check out quickly once I'm able to shop! This year, Nordstrom is letting everyone preview the sale early online, regardless of your status, so that you can create an online wish list, rather than sending out a paper catalogue as they have in years past. Honestly, I hope they keep doing this in the future - it's much more convenient!

Since I have no idea what the coming months are going to look like, I probably won't be buying too many things this year. But here's what I have my eyes on...


 A beautiful blue cashmere sweater  


A pale, drape front jacket (that I own in other colors already!)


A short-sleeved cashmere sweater with rave reviews


A 2-pack of fuzzy socks



An easy cashmere wrap sweater for fall
(This one is also a good option!)



A pair of faux shearling slippers

Monday, August 10, 2020

Outdoor Dining at Home

 Especially lately, I have been trying to grip tightly onto any "silver linings" in relation to the pandemic right now. Namely, I have been spending as much time as possible outside. I've been working outside (I'm so lucky that we have a great deck where I can do this), I've been reading outside, I've been watching movies outside (see how in this post), and, of course, I've been eating outside. I've had so many meals outside on my deck, and I love it. It's not exactly the same as eating outdoors at a restaurant, but it's as close as I'm going to get this summer.

But the thing about eating outside is that sometimes, it's so hot that I don't feel like I want a full meal - I'm just not really hungry. (Because I use a feeding tube overnight, I don't need to worry as much about making sure I'm getting in all my nutrition during the day. Since my major weight loss issue, I've been extremely careful to not let that ever happen again!) Enter the charcuterie board.

 I have always loved ordering charcuterie at restaurants, but kind of forgot that I could replicate the experience at home! I picked up this charcuterie board, which is gorgeous - I love that I can write directly on the board to label things! It did come with some extra, unnecessary screws, so if you pick it up make sure you use the right screws (the shorter ones) when attaching the handles.

I had so much fun picking out the meats and cheeses and spreads from Prime Now (yes... that is what sparks joy these days). I went with brie, drunken goat, and gouda for the cheeses, and proscuitto, salami, and pâté for the meats. I also added an olive tapenade, which my sister was obsessed with, and, of course, some cornichons! I loved it so much that I kept making myself mini charcuterie plates for lunch for the next few days. So delicious, and so perfect for summer outdoor dining.

Friday, August 7, 2020

Friday Favorites

I feel like I'm running out of things to update you on each Friday - it's very much of the same around here. Still in disbelief that it's August, and still trying to take it day-by-day and not think too far ahead. With that in mind, though, my birthday is exactly one month away! My plans begin and end with ordering a Milk Bar Pie, my absolute favorite.

On to the favorites...
I have really been loving my new job - I know I don't share much about it here, but it's been a really exciting time so far. My Center sent out a nationwide questionnaire earlier this year, asking people how they were being affected by the pandemic. We found that family caregivers were being impacted more negatively than non-caregivers in many different areas. The Post-Gazette covered the report, and has some really impactful quotes from some of the caregivers themselves.

I actually don't know that I've found this to be the case personally, but lots of people are finding they're working longer hours from home. Are you? It can be hard, but I think (when possible!) it's really important to set the boundary early that you're not "on" 24/7.

I was influenced to buy these after an Instagram story from Things I Bought And Liked. They don't feel like regular hair ties, and I was very uncertain at first, but they really work! I have so much hair (especially right now, since it hasn't been cut in MONTHS), and these really have a tight hold, and leave way less of a crease when I take them out.

I wanted to end with this one because it's so important to me. British Vogue, for their September issue (the biggest/most important issue each year), put 20 activists on their cover. One of them was Alice Wong, an incredible activist who also has SMA like I do. I can genuinely say that I never expected to see anyone with SMA on the cover of a fashion magazine; it was an incredibly powerful moment for me (and a reminder of how important representation is). Does this mean my dream of someday attending the Met Gala might come true?!

Wednesday, August 5, 2020

SMA Awareness Month: SMA FAQ

August is Spinal Muscular Atrophy (SMA) Awareness month, so each year in August I like to do posts throughout the month talking about SMA. This year, I'll be posting each week on Wednesdays with SMA-related topics. If there's anything in particular that you'd like a post on, let me know - either leave a comment or send me an e-mail at

I thought that I'd start out the month with a general post - an FAQ all about SMA.
What exactly is SMA?
SMA is a genetic, neuromuscular disease. Both of my parents were (unknowingly) carriers - because it's a recessive gene, both parents have to be carriers for a child to be affected by SMA, and even then, it's a 1/4 chance that a child will be affected. It basically affects my entire body, through the nervous system, and results in weak muscles. It's progressive, which means the muscle weakness gradually gets worse over time. There's really no set time frame or schedule, though, for the progression.

There are a few different types of SMA. Type I is infant-onset, and it typically progresses the fastest. Type II (what I have) is childhood-onset, but there's a big range of when in childhood, and the severity. Type III, typically the least severe, is diagnosed during adulthood. And these are all general categorizations, but the dividing lines are vague, especially for people on the cusp when they're diagnosed.

How were you diagnosed with SMA?
My parents noticed that I wasn't meeting my milestones - I wasn't crawling like I should have. The doctor initially wasn't concerned, but my parents pushed for me to be seen by a specialist. Now there is genetic testing done via a blood test, but back then they did testing via a muscle biopsy (I still have a scar on my thigh, but I don't remember it because I was so young).

Have you ever been able to walk?
Some people with SMA (especially those with Type III) are able to walk at some points throughout their lives, but I have never been able to. I never crawled, but I did kind of scoot around on my knees a bit as a kid if I had a surface to hang onto/lean on, like a coffee table. But since SMA is progressive, like I mentioned, I stopped being able to do that sometime during my childhood.

What do you need help with because of SMA?
I need help with a lot of the basic things that most people take for granted. I need help getting in and out of bed, using the bathroom, taking a shower, getting dressed... anything that requires strength! But that doesn't mean that I rely on someone 24/7, either. When I'm at work (in non-pandemic times), I'm pretty self-sufficient during the day (other than using the bathroom) and don't have anyone there to help me. I was a fixture at my Starbucks, and went there on my own. So it's a mix.

Are there any treatments for SMA?
There are currently two FDA-approved treatments. Zolgensma is a gene therapy treatment for children under two years old (I don't know a ton about it because I was well over the age of eligibility when it was approved). The second is Spinraza - it's an intrathecal injection, which basically is like a spinal tap. It's technically approved for all types and ages of SMA, but I haven't been able to get it. It doesn't necessarily help gain back losses (though some people have had gains), but it should slow or stop progression.

The good news, though, is that there's a new treatment that is scheduled for a decision from the FDA later this month! It's a daily, liquid medication, so as long as it's approved for all ages and types, there's a good chance that I'd be able to get it.

Don't forget to let me know about any SMA-related things that you'd like to read more about!

Tuesday, August 4, 2020

A Natural Deodorant That Works

I'm usually what I like to think of as a "healthy skeptic" about natural products. I don't necessarily think that non-"natural" products are harmful, and I know that there are chemicals in everything (and chemicals aren't bad). However - I've always been intrigued about trying natural deodorant. I know that there isn't definitive proof that the aluminum in deodorants is harmful for women, but it's one of those things where if you can cut down or avoid its use, why not do it?

I've always been hesitant, though, because even though I'm not really physically active, I tend to sweat a lot. So I've always steered clear. The thing about natural deodorants vs. regular deodorant/antiperspirants is that natural deodorants don't stop you from sweating like antiperspirants do (it's the aluminum that stops sweat). But I figured that if there was ever a time to experiment with natural deodorants, this was it - I'm not coming into contact with anyone other than my family, and I'm home all the time.

So I went ahead and bought the Kosas Chemistry AHA Serum Deodorant - and I am SO impressed by how well it works!

I have sensitive skin, so I knew that I didn't want a natural deodorant that didn't have baking soda in it, because that can be irritating. I know a "serum" deodorant sounds kind of strange, but I was really impressed by the ingredient list - a blend of AHAs, aloe vera juice, and hylauronic acid. They offer both a scented and a scent-free one, and I went with the fragrance free. It goes on with a rollerball, and it dries pretty quickly - it only feels wet for about a minute or so. It feels nice and cooling as it goes on, too!

I've been using it for a few weeks now, and honestly, I am still shocked at how well it works. I know that people say there's sometimes an adjustment period when switching to a natural deodorant, but I didn't find that to be the case. Not only has my skin not been irritated at all, but it has worked so well as a deodorant that I almost can't believe it. Obviously, I can't guarantee that it would work during a workout, but I have been sitting outside in the 90 degree heat and it's held up incredibly well.

I'm really glad that I made the switch. I can't say for sure what will happen when I'm out and about again - maybe there will be days where the natural deodorant doesn't seem like enough. But for now at least, I'm happy to keep using this one.

Monday, August 3, 2020

August Check In

It feels so incredibly surreal to me that it's August. Logically, I know that it's not March, and that time has been passing, but it feels like those five months have passed in the blink of an eye. August always seems like the signal that summer is winding down soon, and fall is looming, but that feeling seems so far away right now!
I thought it'd be a good time for another check-in because I'm just feeling really weird about everything right now. It's really hard to think about all of the time "lost" to the pandemic - summer is always my favorite time of the year, and I definitely didn't expect to ever spend an entire summer in my home. And I think that my anxiety is also starting to creep up again knowing that with fall comes cooler temperatures, and so much of my mental health right now comes from spending time out in my yard and on my deck. The thought of being cooped up inside all day for months at a time is super overwhelming.

I've also been doing my best to really focus on the day-to-day, and not think about how long this might all continue... but every so often my mind will wander ahead to my birthday, to Thanksgiving, to Christmas... and again, it's just really hard to think about. I never deal well with uncertainty, and this is uncertainty on a huge, huge scale. Sometimes it feels like it's just hitting me all over again, five months down the line. And I don't think I'm the only one - I'm hearing a lot more about closures or delays "for the foreseeable future," without even an attempt at a date, because really, who even knows?

So it's just a weird time for me, right now, and I'm trying to just get through it day by day. I'm trying to take advantage of being outside in the sunshine (while I still can), and seeing friends (from a six feet plus distance) and just trying to not think too much about what's coming ahead. It's not worth getting ahead of myself, especially because if there's anything that these past few months have taught me, it's that so much can change so quickly, with very little notice.

How are you coping?