Wednesday, January 31, 2018

January Report Roundup

I won't lie, I'm pretty excited for January to end. While in some ways, I can't believe that we're already a month into the new year, I also feel like the month has dragged on. It's been cold and snowy, it's already dark when I leave work, the motivation I had from the start of the new year is wearing off... January is just a rough month, I think!

This month has been kind of slow for me - the snow and the cold has kept me inside more than usual, and every time I can finally see the grass again, we get more snow! But I thought I'd end the month with a roundup of some things over the last month that haven't gotten their own post yet, or aren't really exciting enough for a post of their own.

New Favorite Things...

I have been really into technology lately! I already talked about my new Hue lights in this post, but I also recently added an Amazon Alexa (the Spot) to my collection, and I've been wearing the Apple Watch for a little over a month now, since it was a Christmas gift. These will both probably get their own posts once I've used them a little more, but I couldn't let January end without mentioning how much I'm loving all of them!

On a very different note, I also started using a new mascara - the Marc Jacobs Velvet Noir. This may not sound like a big deal, but it is the first time in over five years that I've switched mascaras! It was actually recommended to my sister by a Sephora employee, and I had been hunting for something new, so I gave it a try. I really love it - it gives me so much more volume in my lashes, and it doesn't rub off onto the top of my eyelids by the end of the day.

Soundtrack of the month...

I'm known for listening to a song or album on repeat for months at a time - I don't get bored of things that I'm enjoying! I listened to Lorde's latest album, Melodrama, on repeat like this when it came out, and I re-discovered it this month. A few months after the album was released, she did some videos with Vevo where she performs the songs from the album in really unique ways - some accompanied by piano, some a cappella, some with amazing backup vocals - that are really worth a listen. My favorite is The Louvre, and I cannot get the chorus out of my head.



What was your favorite part of January? Do you struggle with the month like I do? Let me know!

This post uses affiliate links - I may earn a commission from any clicks/purchases you make.

Tuesday, January 30, 2018

My Experiences with Ticketmaster

I love going to concerts and hearing live music - if I had unlimited money, I'd go to every live show coming through Pittsburgh that I had even a remote interest in. There's just something so electric about hearing music performed live - it's such an experience that you can't replicate on a CD.

But I hate buying tickets for these shows on Ticketmaster. I know that it's a huge platform, and that they're battling growing crowds and trying to keep bots from buying tickets meant for real people, but they really have work to do for sales of accessible seats.

I realize that I'm not the only one who gets frustrated with Ticketmaster. Each time a concert goes on sale, thousands of people are trying to access the site at the same time to get the best seats, slowing it down or even crashing it. But think about the last time you went to a concert at an arena or a stadium... how many of the seats were wheelchair accessible? The answer is not very many (any usually, none are in the floor section). So when I'm signing onto Ticketmaster, I'm not as worried about getting the best seats as I am about getting any seats at all.

For example... I had presale access to Justin Timberlake's upcoming concert last Friday. Generally, for each presale offered, only a certain number of tickets are set aside. When I tried to get tickets at 9:15, 15 minutes after the presale opened, it said there were no wheelchair accessible seats available. I figured this was an error, so I tried again around 10... and kept trying until 11. I tried the Livenation site, I tried the Ticketmaster site, and I even tried the Ticketmaster app - which, I found out, doesn't even have the option for accessible seats! The Ticketmaster site itself kept cycling between giving me an error, telling me there were no tickets, and showing me an outdated version of the ordering page with no place for my presale code.

So, I tried to turn to the phone, so that I could talk to someone at Ticketmaster and figure out what was wrong. Turns out, that wasn't an option either, because when the Ticketmaster lines are too busy they just tell you to "call back later" and don't even give you the option of being put on hold! I was feeling desperate, so I even tried the "Express" phone line, where you can order but not talk to anyone, but at 11 AM they still didn't have the option for my presale code in the system.

Which meant I had to resort to Twitter direct messages and the automated e-mail system. I will say that the representatives who got back to me on Twitter responded quickly and have been trying to help me, as did the representative who responded to my e-mail (two full days later). They confirmed that there were no accessible seats left in that presale, and when I pushed back asking how they could have sold out in the first 15 minutes, they agreed to contact the venue and try to get 2 more tickets released for me. But at the end of Friday, they said that the Box Office would contact me on Monday. And I'm glad they did, because when I tried to buy accessible tickets on my own yesterday morning, I still couldn't, because I got an error every time I tried. I honestly don't know if or how anyone else trying to get accessible tickets was able to get any.

I know this sounds like a little thing - I get it, it's just a concert! But it's the added frustration that comes along with what should be such a simple thing! I know that my choice of seats will already be limited, it just adds extra worry and stress having to go through all these extra steps to make sure I can even get a seat at all. I really think there has to be a better way for Ticketmaster to do this - to make sure that people with mobility needs have the same easy access to tickets that everyone else does. I think the Ticketmaster Verified Fan ticketing process is a step in the right direction, but there's definitely still a ways for them to go. The change needs to come from the top - as helpful as the customer service agents have been, I don't want to have to go through this every time I want to buy concert tickets.

Monday, January 29, 2018

Mendelssohn Choir at Mr. Small's

If you're at familiar with the Mendelssohn Choir of Pittsburgh, or Mr. Small's Theatre, you would never expect to see the two mentioned together. The Mendelssohn Choir is Pittsburgh's classical choir, and Mr. Small's is an old Catholic church turned concert venue - not typically where the Mendelssohn performs. But this weekend, Mr. Small's is where they were found, for "The Times They Are A-Changin': The Words and Music of Bob Dylan."

There are two reasons I was planning to go to this concert as soon as I heard about it. The first is that one of my best friends has been singing with the Mendelssohn for a few years now, and she kept telling me that she really thought I would love this concert. The second is that the arranger of this show, Steve Hackman, also arranged the FUSE show I saw (and loved!) with the Symphony and talked about here.

The show absolutely lived up to, and even exceeded, my expectations. The first half was filled with some other Hackman mash-ups (like a great Hallellujah/Alleluia mix) and some other pieces, including one in Spanish that used a piece of sheet metal as an instrument to sound like rain, which is really did. The second half was where the choir took on Bob Dylan, and it was amazing. I'll be honest and admit that going into the show, I didn't think I really knew many Dylan songs. I knew more than I thought I did, but I was even into the ones that I didn't. You could tell that the choir was really enjoying themselves, and the songs were such a great twist on Dylan's music. I haven't been able to get "Tangled Up in Blue" out of my head since Saturday night!

It was also fun to see the Mendelssohn perform at Mr. Smalls, which they actually sold out on the night I went! I will say, I do wish that Mr. Smalls was more responsive, ahead of time, about my accessibility questions. They were great in-person, though, and made it really easy and smooth for me to get everything I needed and get to my seat.

I'm really glad I was able to experience the show, and I'm hoping that Steve Hackman comes back and teams up with the Mendelssohn again soon!

Friday, January 26, 2018

Friday Favorites

Each Friday, I share what I enjoyed reading, watching, and listening to in the past week.

Reading... 

This article from New York Magazine talks about the flu, flu shot, and why you should get it this year. I also talk about my own experiences with the flu in this post, so please let this serve as a double reminder to get your flu shot this year if you haven't yet.

If you've been following the news, you've seen the stories about Larry Nassar, the doctor for many US champion gymnasts. This interactive New York Times article, with excerpts from the victims' statements, really drives home how widespread his pattern of abuse and assault really was.

Listening/Watching...

My love of Hamilton is well-documented by now. I love listening to both the original soundtrack and the Mixtape - and now I love watching the newly released music video, too!




Thursday, January 25, 2018

Nutrition and Wellness

As someone who works and studies in public health, I know that what you eat, your exercise habits, nutrition - these things are all incredibly important to people's overall health and well being. But as someone with a neuromuscular disease, nutrition isn't something I'm really an expert on - I had trouble gaining weight before my feeding tube! So, I wanted to get an outside, more expert perspective to talk about these kinds of things. Liz, someone I've know for years (her sister and I have been friends since 4th grade!) actually went to school for this, so I invited her to write weekly posts here.

Hi there! I am Liz, a friend of Heather’s, and I will be writing about topics concerning nutrition and well-being. I have a pretty good background in nutrition and was excited when Heather asked me to write on topics that I found to be important. So for today’s article, I want to briefly discuss nutrition labels.
Image via

Take a look at these nutrition labels. The left label is one you all are probably very familiar with, whereas the right side label is an example of a new-ish, proposed design that has yet to hit the shelves.

Right away you should notice two things: the letter size of “calories” and “serving size” have drastically increased. The reason for the increase is to draw the viewers eye to how many calories are in a particular serving. Believe it or not, many people are not educated on reading a nutrition label and assume that the calories listed is for the whole container. In the label on the right, you can see that in a 2/3 cup of the item, there are 230 calories in that serving size. Because there are 8 servings in the container, if you were to eat the whole container, your caloric intake would be 1840 calories (230 calories x 8 servings).

The next thing that should jump out at you is the fact that under “Total Sugars” is a sub-heading of “Includes ____g of Added Sugars.”  So what is the purpose of this? To help inform consumers in making healthier decisions. There are foods that have natural sugars within (think of fruits) and foods that have sugars added to them to enhance flavor (thinks of cereals -corn syrup) and consumers should be wary of items that have added sugars in them as they increase caloric intake and decrease nutritional value.

You can also see that Vitamin D and Potassium have replaced Vitamin A & C. The reason for this is that more consumers tend to be deficient in Vitamin D and Potassium versus Vitamin A & C. I am so happy to see Vitamin D added to labels!

I just want to take a brief moment to describe the % Daily Values, based on a 2000 calorie diet. Here is the best way to think about those numbers. Anything less than 5% is low. Anything greater than 20% is high. The nutrients you typically want low numbers in are total fat, trans fat, cholesterol, and sodium. Looking at the nutrition label above, you can see that there is a moderate amount of total fat and sodium in this food. The nutrients you typically want to aim for 20% or greater are fiber, vitamins, and minerals. Every individual has different nutrient needs which is I use the word “typically.” A person with cystic fibrosis has very different nutrient needs from a person with heart disease.

I hope you enjoyed today’s quick and brief lesson about nutrition labels and what to expect in the near future. If you have a certain topic you would like to read about, let Heather know - comment below, or e-mail her at theheatherreportblog@gmail.com!

Wednesday, January 24, 2018

Favorite Restaurants in Pittsburgh

I found out yesterday that Six Penn, one of my favorite Pittsburgh restaurants, is closing in a few weeks. I actually just had dinner there for Restaurant Week, and have spent many summer evenings on their rooftop! I'm so sad it's closing, and will have to find a new go-to downtown restaurant. If you live in Pittsburgh, I highly recommend you go for a meal before it closes - whether it's your first time there, the last of many, or something in between.

Since Pittsburgh restaurants are on the forefront of my mind, I thought I'd share my other favorite restaurants with you! I love going out to eat and trying new places.

The Porch
The Porch is my go-to Oakland restaurant - both for happy hour and for a meal. It's actually owned by the Eat'n'Park Hospitality Group (who also owns Six Penn...) but is nothing like Eat'n'Park. The menu is small, changes seasonally, and there's always something interesting to try. Plus, they're located right in Schenley Plaza, and have amazing outdoor "porch" seating, hence the name.

Meat & Potatoes
Meat & Potatoes opened downtown a few years ago, and has been one of my favorites ever since. Their opening did a lot to revitalize the "Cultural District" downtown, and now there are so many good restaurants to choose from! They do contemporary American cuisine, and also have a great outdoor patio in the summer! They book up early, though, so you should plan on making a reservation for sure.

Morcilla
This restaurant was named one of Bon Appetit's Best New Restaurants (nationwide) so you know it's good. The menu is Spanish, and it's tapas-style, with a focus on different cured meats that they make in house. The restaurant is very small, so plan ahead or expect to wait, but it's worth it. They're actually currently closed because of flooding damage, but I'm hoping they'll be back up and running soon.

Senti
Senti is in Lawrenceville, not too far from Morcilla, but has a very different vibe. It's a chic, upscale Italian restaurant, with a very cool automated wine dispenser! I mentioned going to Senti in this post - everything was so incredibly delicious, and I can't wait to go back this summer to check it out when the patio is open. (Can you tell I love eating outside?)

Silk Road
This one is in the South Hills, definitely not in one of the trendier areas, but has some of the best sushi I have ever tasted in Pittsburgh! They also have a full Chinese menu, but not just the typical General Tso's and Sesame Chicken - they make a Steamed Ginger Flounder that I love, and they also make a Shrimp-Stuffed Eggplant.

Altius
I'm ending on Altius because it is a definite splurge, special occasion restaurant for me. It's located on Mount Washington, and the food and the view are both equally incredible. The service is fantastic, the menu is delicious - it's an incredible meal and experience all around. The only bummer about this restaurant, for me, is that there is only a very small area of seating that is wheelchair accessible, and it's not by the windows!

Tuesday, January 23, 2018

Getting Organized: Desk Edition

It's still January, and I'm still on an organizing kick. I talked here about getting my schedule and my life in order, and wanting to keep this trend going through the year. I knew that this meant the next big thing I had to tackle was my desk.
In general, if I'm not careful, I can tend towards a messier organization style. I'm not sloppy, but I start piling papers on top of each other and creating pile after pile and things start to spiral. Some of this is because there are so many surfaces that I can actually reach. This means that cute shelving units, file cabinets, and bookshelves are all out for me for things that I actually want to reach easily. But I know that I can't blame it all on my reaching abilities (or lack thereof). I like when things are organized... I just don't like the effort required to keep it that way! But I feel so much better when it's done, and I knew it was time.

I know that everyone has their own way of organizing, but here's what made the whole process a little easier for me:

  • Start with a clear desk
    It's harder to decide what to keep and where to put things when you're trying to organize while the mess still exists. I took all the papers off my desk (there were a lot!) and sorted them into piles on my bed - things that needed to stay on my desk, things that could be thrown away, and things that needed to be saved, but not on my desk. I also collected the 5-10 small journals/notebooks on my desk (I have an obsession), kept one or two out, and put the rest away for now.
  • Deal with one section at a time
    This is what I do when I'm organizing my closet, too, because it keeps you from getting overwhelmed. So first, I dealt with all the papers on my desk, which took the most time! But I also had some gift cards, old birthday cards that were too cute to get rid of, random cords that didn't go with any devices I currently use... I dealt with each of these one at a time.
  • Have a storage/organizational system in mind
    My desk (this one) doesn't have any drawers, because they usually end up blocking my wheelchair from being able to fully ride underneath the desk, so I have to get creative with storage. I have a few on-desk storage things, like an mail sorter to hold my important/time sensitive papers, but mostly, I have to sort and prioritize! I decide what I need to be nearby, and the rest can be stored somewhere else that I can't reach without help.
  • If all else fails, bribe yourself!
    I knew I needed somewhere to put the cute birthday cards I mentioned above, plus other keepsakes that I don't want to get rid of but also don't want to keep sitting on my desk. And I'm always motivated by the thought of buying new room decorations online, so I scooped up this cool magnetic bulletin board to display my things!

Monday, January 22, 2018

Disability and Technology

I've always been a fan of technology, and also surrounded by it. Some of that is out of pure necessity - my wheelchair is a huge, very technological part of my everyday life! But some of it is just my personality. In college, I used some of my earnings from my first-ever summer internship to buy a Palm Pilot on E-Bay to replace my paper planner. I may not be using the Palm Pilot anymore (and I actually use both a digital AND paper calendar), but the love of technology has stuck with me.

My favorite kinds of technology are the things that are both fun AND useful to me - things that are cool and new, but also actually serve a real purpose for my life. The most recent addition, for me, is the Philips Hue Lightbulbs.
I like rooms to be BRIGHT. My Dad always gets mad at me for turning lights on and leaving them on all over the house, but I just always like things to be well-lit! When we renovated our house back in high school to make it more accessible for me and my sister, we made sure the light switches on the main floor were low enough that my sister and I could turn them on and off. But the switch in my bedroom didn't get lowered, and I also have lamps that I can't reach the knob on. To get around this, you can use handheld switches that plug into the outlet and let you control it remotely. But you need to have a different switch for each device, and I have a ceiling lamp plus two floor lamps. My desk got crowded very quickly!

That's why I was so excited to hear about the Philips lights! They weren't designed for people with disabilities - they were invented to go along with all the smart house technology that's coming out now - but they make things so much easier for me! The lightbulbs themselves are WiFi connected, so now I can control all three of the lights in my room with my phone (or, soon, with my Amazon Echo device).

They have cool features for people WITHOUT disabilities, too. You can set schedules, where they turn off and on at predetermined times, and they even have a feature where they gradually turn on, so they'll replace the wake-up light alarm clock I talked about here.

There are a lot of other things like this, too - the Nest thermostat, which you can control from your phone (or with Siri or Alexa), and things like the August smart lock, which even lets you assign codes that people can enter on the keypad to enter. That feature would be perfect for someone like me who has aides that come to help, and don't necessarily have a key. All of these innovations have uses for people with and without disabilities, which I love! I just wish they were a little less expensive.

(This post uses affiliate links; I earn a small commission from any clicks/purchases you make.)

Friday, January 19, 2018

Friday Favorites

It's supposed to warm up a little bit this weekend, which I'm really looking forward to. I miss the sun!

I'm going to try something new with this post, and try sharing something I enjoyed reading, watching, and listening to in the past week.

Reading...

I love the Refinery29 Money Diaries. I've actually been reading these for a while, but there have been so many new posts this week that it seems like the perfect time to share. Each post is a week in the life of a different diarist, tracking their life for the week and what they spent money on. It's really interesting to see how people spend money differently, and also interesting just to see how everyone spends their time during the week!

Watching...

The first episode of My Next Guest Needs No Introduction... with David Letterman on Netflix is definitely worth a watch. The guest on the first episode is President Obama (so, the title of the show isn't an exaggeration!) and the interview he gives is really insightful and thought-provoking. The guests announced for the rest of the episodes look great, too!

Listening...

I loved listening to the Gilmore Guys podcast when it came out (I actually haven't listened to the final episode where the Kevin and Demi interview Lauren Graham because I'm not ready for it to end). Kevin is back with a new podcast talking about The Marvelous Mrs. Maisel, a new show on Amazon by the creators of the Gilmore Girls. I recommend both the show itself and the podcast, called Maisel Goys.

Thursday, January 18, 2018

Pulling Yourself Out of a Winter Slump

First of all, thanks so much to everyone who read yesterday's post and left me comments on Facebook and Instagram - it really helps to know that I have everyone's encouragement and support!

I'm taking a break from the heavy posts today to talk about something else that's been on my mind a lot: Winter. We have had so many days of freezing or below temperatures, and it seems like every time the snow has a chance to melt, the ground is already covered again less than 24 hours later. In a few months, this cold weather will actually make me angry, but for now, it just makes me feel listless. Winter puts me in a real slump - I don't want to do anything other than go to work, go home, and change into PJs, but even that bores me after a few days of the same exact thing! So I'm sharing some of the things I do to try to make me feel less miserable in the cold weather.
Look Better, Feel Better
Some people might call this vain, but I don't think it is. I really do feel better and happier when I know I look more put together. For me, this means doing my nails every Sunday night (I am an Essie Gel Couture obsessive) and doing a face mask once a week. These are small things, but adding them to my weekly routine helps me feel better, and in turn, improves my attitude. If the temperature goes over 32 degrees, throwing on a cute outfit for the day also raises my mood a lot!

Make Plans - With Other People or Yourself
Sometimes, making fun plans that you know you'll look forward to goes a long way. Sure, the thought staying in PJs is incredibly tempting! But making plans that you're excited about - a new movie coming out, a restaurant you've been wanting to try, a cool museum exhibit - will be worth it, and will take your mind off winter. What if you can't convince anyone to brave the elements and join you? That's when you make plans with yourself! "Me time" can be so underrated, but so valuable. Whether you're taking yourself on a movie date in the theater or on the couch, spending time with yourself can help quiet your mind.

Entertain Yourself At Home
Some days, it's just too cold and you just don't want to deal with it. That's fine! You don't need to go out to break out of your rut. Pick a new book to read, or a new movie or TV show to watch - try picking something different than you usually would so you're still pushing yourself out of your comfort zone. You can make it a group activity, too - plan a game night and invite all your friends over, or a chick flick marathon.

Any tips you have for beating winter boredom and breaking out of the usual rut? Let me know!

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Wednesday, January 17, 2018

The Spinraza Saga, So Far



Today's post is a long one, but it's incredibly important to me, so please bear with me and read until the end!
Image via
A little over a year ago, right before Christmas in 2016, the FDA announced that they were approving Spinraza - the first ever drug treating Spinal Muscular Atrophy (SMA). This was such huge news - getting FDA approval is not an easy process, and it had been years in the making, through research and clinical trials. The drug was approved for all ages and all types of SMA (I'm Type II). Spinraza isn't a cure for SMA, by any means, but it can slow the progression of the disease, and in some cases, people actually see some gains of strength and abilities that they'd previously lost. Because of the way the drug works, the younger you are, the more effective it will be - most of the studies had been done on infants and young children with Type I.

I was excited, but a bit hesitant, after hearing the news. I know how slow medical things can be, and FDA approval is a great first step, but actually getting the treatment is a whole other thing. It involves getting physicians on board, getting the medication produced and to the facilities, and getting insurances to cover it as well. Complicating the matter even further for me is that Spinraza has to be injected intrathecally - into the base of the spine. I had a spinal fusion when I was in middle school (as did most other people my age with SMA) because of severe scoliosis, and having metal rods attached to your spine definitely complicates injection - though it doesn't make it impossible.

I knew it was early still, but I contacted my neurologist to at least discuss Spinraza with her. I didn't speak to her right away, but the nurse who I spoke to gave me a prepared speech about how the clinic had currently decided that they were not going to offer Sprinraza to any adults. This was incredibly disappointing, but not altogether shocking to me - at that point, not many adults had gotten Spinraza at all, and no one with a spinal fusion had gotten the drug, either. I understood that working these things out takes time, and wanted to be patient while clinicians figured out the best way for adults to be treated. When I did get in to actually talk to the neurologist, she didn't seem very enthusiastic about the possibility of Spinraza - she wanted to make sure I knew that it only stopped further progression of the disease; basically, she didn't think it would really be of any value to me.

That insinuation was frustrating enough on its own. For my neurologist, who is supposed to be my physician who specializes in the treatment of SMA, to think that stopping the progression of my disease wouldn't be beneficial really made me feel that she didn't understand the reality of the disease, or of my life. Stopping my disease from progressing could mean the difference, for me, between some sort of independence and living at home for my whole life; between breathing on my own and relying on a ventilator to breathe! These aren't small things - they are huge, life altering changes that Spinraza could potentially stop.

Then, I found out through the Facebook group that I mentioned in this post that adults were being treated, all over the country. Not every single adult can safely get the injection, but many can - interventional radiologists can do a fluoroscopy-guided CT scan to help find the right place for the injection. I kept checking the Facebook group, and kept seeing more and more adults posting messages about getting the treatment, and the benefits that they were seeing. I took this information back to my neurologist through e-mail, and she just said that she didn't have any real update for me or any further information, and that they still weren't treating adults at the clinic.

Someone else that I know with SMA has actually started the process of getting Spinraza in Cleveland, where they are treating adults. But this means that she has to travel to Cleveland every four months, potentially for the rest of her life, to get a treatment because UPMC here in Pittsburgh is refusing to offer it.

It's so incredibly frustrating to know that there is a treatment I could be getting, but that I'm not  receiving it because my doctor doesn't think it'll be helpful enough for me. It's frustrating to feel that she doesn't want to put in the effort to figure out how I could be treated. It's frustrating to have to continue to fight against my doctor, who is supposed to have the best interests of my health in mind. It's frustrating to think that I need to take a four hour round trip ride to Cleveland every four months because my doctor in Pittsburgh isn't interested in helping me get treated here - especially since travel isn't exactly easy for me (which I talk about here)! Basically, it's frustrating that I have to continue to fight so hard for my health, when I already have to fight for my health every single day of my life.

There's no real end to this saga, right now - I'm going to continue talking to anyone that I can at UPMC to convince them to follow the lead of other academic medical centers all across the country and allow me to have access to a life-changing drug.

Tuesday, January 16, 2018

Taking Care of Yourself

2018 hasn't exactly started off the way that I thought it would. I actually spent some of New Year's Day in the Emergency Room, because I woke up with back pain that hurt so badly I couldn't go back to sleep. I'm still not exactly sure what caused it - it seems like it was some sort of pulled muscle situation - but luckily it wasn't anything major and the pain did go away eventually.

And then I was really excited to have this past Monday off work. I was looking forward to the three day weekend, had dinner plans for a friend's birthday, hoped to get some serious blogging done, maybe take some pictures... but you'll note this post is picture-less, because I woke up Saturday morning coughing with a cold.

I've talked before about I need to be very, very careful about getting sick. Just like I have to be careful when I get the flu (reminder to PLEASE get your flu shot!), I also have to be careful when I get a cold. Because my lungs aren't very strong, a little cough can turn into pneumonia or a collapsed lung if I'm not careful. So I had to cancel all of my plans this weekend, and I've just stayed home, resting, and drinking lots and lots of water.

I know that a cold isn't as serious for everyone else as it is for me, but I think that the underlying message of being careful and taking care of yourself is still an important one for everyone! Especially with social media, it's so easy to see everyone else doing so many fun things, and make you feel like you're missing out on something amazing if you have to cancel and stay home. But I think we all know by now (or we all should know!) how many of those pictures are posed, or don't really show the full picture. We can't constantly be comparing our lives to someone else's - it's important to put your own wants and needs first! As much as I wanted to go to dinner to celebrate my friend's birthday,  I know that she understands that my health has to take priority, so that I can get better and not have to miss other, future dinners! Taking care of yourself is taking the long-term view, rather than the short-term one, and sometimes that's hard to do, but it's completely worth it.

Monday, January 15, 2018

New Year, New Habits

I know I said I don't really do New Years Resolutions, which is still true, but I don't mind the thought of starting fresh in the new year and starting new habits.
I've always loved little notebooks and journals and diaries. I had them all - paper ones, the coveted "Password Journal" that would only unlock if you said your password out loud, and I even tried using a password-protected file on my laptop as a journal. When I was younger, especially during the summer, my Mom would make my sister and I journal at the end of every day - just write down what had happened, what we were thinking, nothing crazy. But I don't like being forced to do things, so that never lasted very long! I would write in my diaries occasionally throughout middle school, but that was mostly just writing about drama between friends and who had a crush on who! I never kept writing for more than a week or two.

But I do like the idea of having some kind of record of what is going on in my life! Writing this blog actually does help with some of that, which is great. But this isn't necessarily where I'm going to share all of my thoughts and feelings and ideas and goals - no one wants to read a stream of consciousness about my life.

So my new habit is to write in this cool new Q & A a day journal that my friend bought me as a Christmas present! I like that it's short and sweet, so it's not something I can get bored with - every day, there's a different prompt that you write a one or two line response to. You do this every day for five years, so you can see how your replies change from year to year! I think that this is the perfect way to keep track of my life, and to reflect on what is different (or the same!) in my life from one year to the next.

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Friday, January 12, 2018

Report in Review

This past Sunday was the Golden Globes. I love watching award shows, and the Golden Globes are fun because they're a mix of movies and TV, so it's a little bit of everything, and there's more of a chance that I've actually seen the things nominated!

Talking about the lack of diversity in Hollywood isn't anything new, but it is something that comes up every year when award season rolls around, because seeing the award winners is a reminder of how far we still have to go, diversity-wise. But when people talk about diversity in Hollywood, they're generally talking about racial or gender diversity - the lack of disabled representation doesn't really get considered.

Have you heard of the term "Oscar bait?" It's when an actor/actress takes on a role that can almost guarantee an Oscar nomination. Often, these roles are characters with disabilities, and almost always, they are played by actors without disabilities. I can count on one hand the number of actors with a disability that I've seen on TV or at the movie theater. Over and over again, characters with disabilities are played by actors without disabilities.

That's the topic of this fantastic article from Teen Vogue by Alice Wong - you should definitely check it out. I'm glad that Hollywood is starting to create roles for disabled characters - but there's no reason not to cast actors with disabilities in these roles! I love seeing disabled people represented in the media - but I'm not sure it counts as representation if there aren't actual disabled people being cast.

I want to end this on a good note, and point out the shows that I think are doing a great job including disabled actors! Everyone loves Breaking Bad, and RJ Mitte was amazing as Flynn - both the actor and the character have cerebral palsy. The TV show Speechless stars Micah Fowler, another actor with cerebral palsy - and the plot of this show centers around his life. And finally, I've talked before  (here) about how I love Difficult People (which sadly is now cancelled!), where Shannon DeVido appears as a hilarious recurring character who happens to have the same disease that I do, Spinal Muscular Atrophy. These are the shows that make me hopeful for the future of disability representation in the media.

Thursday, January 11, 2018

New Favorite Sweater Dress


I hate being cold in the winter. Every morning, before I get dressed, I check the weather and try to figure out what I can wear that will keep me the warmest - something that's been more and more difficult the past week when the temperatures keep dropping more and more! There is one dress, though, that has been on constant rotation in my daily outfits.
I picked up this dress from LOFT during a Cyber Monday sale, and basically haven't been able to take it off ever since. It is so comfortable and warm, even on the coldest days - I have started calling it my "sweater blanket" because of how cozy it is!

I know that there aren't many sizes left in this particular dress, so I picked out some other similarly cozy options in the widget below. Sweater dresses are so perfect for the winter because they look cute and put together for work, but you still feel like you're wrapped in a blanket of warmth!

(This post contains affiliate links; I may gain a small commission for any clicks/purchases you make.)

Wednesday, January 10, 2018

Reflecting on 2017

I mentioned in this post that I don't really make resolutions with the New Year, but I do like to look back and reflect on the last year. So I thought that I'd do that with this blog, as well, and look back on my five favorite posts of 2017.

1. SMA Awareness Month
I couldn't make this list without starting with this post, and the rest of this series of posts, too. It was exciting to be able to share so much about SMA with everyone, and help people understand the different ways it affects my life.

2. Knight of Malta Investiture in Washington, DC
This was such a fun event and such an incredible experience, and of course I was happy to be able to support my friend! I love DC and I love any opportunity to wear a fancy dress and go to an event, so this was perfect. I don't know that any event in 2018 will be able to top it!

3. The Importance of Quality Friendships
I love this post because it really is so important to how I live my life. I really think you have to be a good friend and surround yourself with good friends - a small number of great friends are so much better than a bigger group of acquaintances!

4. Health Activist Expo
This is a short post, but it was represented a lot of hard work and effort! I was so proud of how Accessible YOUniverse came together, and I'm even more excited to see where it goes in 2018.

5. Stacy London At The Frick
Last, but certainly not least - how could I not include the time that I met Stacy London?! Not only was she so incredibly sweet and genuine, she also gave a really amazing talk about fashion and style. I loved that I got to have a short discussion with her about diversity in fashion! Such an amazing experience that I will never forget.

I'd love to know what YOUR favorite posts of 2017 were - let me know!

Tuesday, January 9, 2018

The Upside of Social Media


If you've read here before (or if you know me in person) you know that I have Spinal Muscular Atrophy (SMA) and I'm in a wheelchair. SMA is an incredibly rare disease, and for most of my life, I only knew two other people who had SMA, and one of them is my sister! And because SMA is so rare, and because there are still a lot of things that doctors don't know about it, my family and I became the de facto experts about living with the disease. That's not to say that doctors didn't help us at all, but a lot of times, it's the day-to-day experiences about living with SMA that you're not sure how to deal with - going away to college, getting a job, getting attendant care.

But a few years ago we found a few SMA groups on Facebook. It's been really fascinating to join in and read the posts of other families who are also living with SMA. It's comforting to see people posting who are older than me - people who have been able to successfully navigate living with SMA as an adult. It's also exciting, in a way, to see other people posting about things that we wondered about too - it's that little zing of knowing that there are people out there who have had the same experiences! And it's amazing to know that there is a place I can turn to with questions, where I'll get lots and lots of answers. The group has also helped me learn a lot about a new treatment for SMA, but that's a lot to explain and another post all on its own.

Having the ability to chat with people who are experiencing the same things that I am, and who can answer questions for me when I don't know where else I could find the answers, is so vital! Social media is great for staying in touch with family and friends, but I love that it's also connected me to another community of people who would never have met, otherwise.


Monday, January 8, 2018

Getting Organized

This weekend was so incredibly cold, all I wanted to do was hibernate. I did venture out on Friday night, though, because I had tickets to see Trevor Noah! The show was hilarious, and absolutely worth braving the elements.

But now the weekend is over, and the semester is starting again for me. Luckily, I don't think that this semester is going to be too difficult for me, which I'm really happy about. Every time a new semester starts, I get a burst of motivation to be organized. For me, it's not a new year that spurs me to make goals and be motivated, but a new semester! So I took some time this weekend to start to get things in line.
And the end of the year, I bought a new planner. I'd been trying out using just electronic calendars, but for me, there's something about paper and seeing things written down and laid out - especially with assignment due dates and exams and things for school. I still use my phone calendar, too, but it's a mix of paper and electronic that works best for me.

I'm really, really picky about my planners.... probably too picky. I like them laid out weekly (I don't see a need for the month-at-a-glance pages), and I hate when the boxes for Saturday and Sunday are smaller than the rest of the week. While this weekend may have not been busy for me, there are some weekends where I have just as many plans as I do on a typical day at work! So I did a lot of online searching for a new planner, and came across Agendio. They let you totally customize everything, so you can decide exactly how you want your planner to be laid out. I love what I picked, and I'm so happy that I found something that was exactly what I wanted.

I want to take the time in the rest of January, while I still have this motivating energy, to keep organizing the rest of my life! I want to finish going through my closet, organize the mess of papers on my desk, and also deal with my vanity, which has gotten out of control! Big goals, but I'm hoping that I can make some progress, and then keep up with it!

Friday, January 5, 2018

Report in Review

I have been meaning to talk about today's topic for weeks, but wanted to wait until after the holidays. When I got to chat with Stacy London after her talk at the Frick (read about that here), she mentioned a new show one of her friends was doing - Divided States of Women.

I think this series is fantastic. It's a series of short videos, about 10 minutes each, and each episode tackles a different topic that women today are facing. Each episode is approached in an inclusive way - the point is to hear more women's voices and opinions! The host, Liz Plank, does a great job making each episode interesting and informative at the same time. The length of each episode lets you learn about something new while being short enough that you can watch it whenever you have a few spare minutes. There's also a podcast, which I haven't finished listening to yet, but am also enjoying!


One of my favorite episodes is about the power of social media. In the episode, Plank interviews a disability advocate, and they talk about how the Internet and social media can help spread awareness. It really hit home with me, and I thought it got at the core of what I'm trying to do with this blog! I wasn't able to embed the episode, but you can check it out here. And of course, I can't talk about my favorite episodes without mentioning the most recent, where Plank talks to Stacy London (watch here).

Divided States of Women focuses on some really important, but not not frequently discussed, topics. Check it out here and let me know what you think!

Thursday, January 4, 2018

Staying Warm in the Winter

It has been in the single digits this week in Pittsburgh. That is way too cold for me, and really makes me want to hibernate until the sun is shining and I can actually see the grass again. This means I'm spending a lot of time in my pajamas, with a comfy blanket, watching Netflix or reading a good book.

I wanted to share some picks to help you stay warm in the winter, too! When you're relaxing at home, it's so important to be comfy and cozy.

Cozy blankets
A warm, soft blanket is key when you're relaxing at home. I just got a great faux fur blanket, similar to this one, for Christmas, and also have a cable knit one similar to this (I like options)! Both are incredibly comfortable and keep me nice and warm.


Winter Pajamas
In the winter, PJs have to be comfy and warm. I love that these pajamas are fleece, because I'm not a big fan of flannel PJs. And if you're looking to add another layer, this cute fleece sweatshirt looks perfect!


Long Robe
I'm not a big robe person because it's not easy for me to get one on, but I totally see their benefit for other people. Both this option and this one are long and soft, and are perfect for throwing on over your pajamas and lounging around.

What are your favorite things to cozy up with during the winter?

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Wednesday, January 3, 2018

Recent Recommendations


Even though I took a break from the blog during the holidays, I didn't get as much of a break from life as I hoped I would! I had visions of lots of pajama time, reading, relaxing, and sleeping in. I did get to do some of that, but I also spent a lot of time doing things with friends and family. It's certainly not something that I'm complaining about, but just different that I had imagined it!

Luckily, I did fit in some relaxation time, and managed to do some reading. It's really hard for me to read for fun during the semester (thought it's something that I'm trying to get better at). I love reading, but I get sucked into books really quickly, and don't want to put them down, which leads to hours going by without me really realizing. This meant that my time without plans was perfect for reading, because I could spend as much time as I wanted!

I read on my iPad, because it's so much easier for me than having to hold a paper book (especially the bigger, heavier ones). This means I buy most of my books online - I use the Nook app, which is through Barnes & Noble - and it can get dangerous quickly for my bank account, because so many books look good. I really need to figure out how to borrow e-books through the library... and then work on my patience, too, so that I wait if they're not instantly available.

I've shared a lot of TV shows and movies here, but not as many books, so I wanted to tip the balance and share my recent reads.

Little Fires Everywhere by Celeste Ng
This books was incredible. I was drawn in basically from the very first page - the characters are so complex and well-written, and I couldn't put the book down. I highly recommend it and cannot wait to read more of Ng's books.

The Royal We by Jessica Morgan and Heather Cocks
I have actually already read this one, so it was a re-read for me, but I wanted something fun and this seemed appropriate in honor of Meghan Markle's engagement to Prince Harry. It's about an American who gets engages to the Prince of England, and it's such a cute fictional love story! The authors also write one of my favorite blogs, Go Fug Yourself - check out both the book and their site!

Who Thought This Was a Good Idea? by Alyssa Mastromonaco
I had been meaning to read this one for a while, and I'm so glad I finally made the time. Mastromonaco worked in the White House during the Obama administration, and shared stories about how she got there, what it was like working in the White House, what life was like after she left. It wasn't just a memoir, though - it was filled with helpful advice, including a packing list that I am definitely going to start using whenever I travel.

Uncommon Type: Some Stories by Tom Hanks
Did you know Tom Hanks wrote a book of short stories? I didn't until I came across this book on Barnes & Noble's website, and knew I had to give it a try. I haven't finished all of the stories yet - I'm reading one of two of them in between the other books I've been reading - and they've all been interesting and different. I love hearing Tom Hanks' voice in my head while reading them, too!

Have you read anything good lately? I'd love to hear if you did!

Tuesday, January 2, 2018

Looking Ahead


I've never really been a "New Years Resolutions" type of person - it's not that I don't set goals for myself, but January 1 seems like too much of an arbitrary time to decide to do something! But what I do like about New Years (other than celebrating with friends and family, of course) is reflecting on the end of one year and the start of the next.

I'm looking forward to 2018 - I'm getting closer to finishing my master's program, I'm making plans to continue working on Accessible YOUniverse, and I'm continuing to blog, too! It seems like 2018 has the potential to be an exciting year for me. I don't want to get ahead of myself, though - I want to make sure that I take things as they come! Some of the most exciting things that happened to me in 2017 - like taking part in the Health Activist fellowship - were things that didn't know about for too long in advance, and just happened upon!

But I'm definitely more of a planner than someone who just lets things happen. So maybe 2018 can be about balance, for me - about finding the happy medium between making plans, but leaving room for letting things happen! That's as close to making a resolution as I'm going to get.

Monday, January 1, 2018

Happy New Year!


I'll be back to my regular posting schedule tomorrow, but I wanted to wish you all a happy and healthy new year! I'm really looking forward to continuing this blog in 2018.