Wednesday, February 28, 2018

Why I Strive For Balance

I've talked a lot about balance here. I've talked about prioritizing, and knowing your limits, and I've taken days off from posting when I just couldn't get a post up in time. Just last week, I had a deadline for a program that I'm applying to (which I finished in time - yay!), and I knew there weren't enough hours in a day to get everything done that I wanted to. I had to make a choice - sleeping, or getting a post up - and I chose sleep. So I thought that today, I'd give a little more background on why I focus on this topic so much, both on the blog and in real life.

I've talked about how I like doing things, and getting involved. And I've also talked about liking to take time off over the weekend and relax. But I haven't really ever talked about how important sleep is for me. It's not just that I like sleep (which I do), and not just that I'm a happier, nicer person when I get enough sleep (which is also definitely true - for both me and everyone else). I need sleep because when I'm tired, every single thing in my life is harder for me. My body physically needs sleep for me to function just at my baseline. When I don't get enough sleep, moving is harder for me. My body feels heavier, and it's harder for me to raise my arm up to put my hair behind my ear, or put my makeup on, or pick up my cup of coffee.

That's why knowing my limits is something that I'm constantly struggling with. When I find out about something that interests me, I don't like saying no - I don't like thinking that there are things I can't do because I'm in a wheelchair. I was raised to be really independent, and I'm a very stubborn person - when you combine those two traits, it's a dangerous combination! So while everyone may not be able to relate to the physical difficulty I have when I'm tired, I think that everyone can relate to this struggle. I think it's why self-care has started being so popular - because people feel guilty when they prioritize their physical needs over their wants, when doing this means they have to say no to someone or something. But I have an actual physical symptom that tells me when I'm not prioritizing correctly. So hopefully, you can learn from my lessons, and it can make it a little bit easier for you to feel okay about choosing to take care of yourself.

Tuesday, February 27, 2018

Representation and Fashion - Why I Blog About Style


I know that sometimes, people think that blogging about fashion and style is inconsequential. People love reading about my SMA experiences - and I love sharing them and helping people to better understand my life - but I don't think that means I can't also blog about skirts I think are cute, or a dress I bought and am loving. Actually, I think that both matter!

Sometimes, people take clothes for granted. They're just things you put on to get through your day. Or maybe you're interested in fashion, and like using clothes to express yourself. But for me, clothes are more than that. Clothes are a way to fit in.

When you're in a wheelchair, you don't need anything to make you stick out more. I know that my wheelchair makes people do a double take, and when we meet, they're going to remember me. (Occasionally, this means I have people saying hi to me... and I cannot remember their name or how we met. Sorry! I really try.) But if people are going to look at me more closely than they'd look at anyone else, I want to make sure that once they look past the chair, what they see is a person like anyone else. I want to be wearing great outfits, so that in the future, people remember me as the girl with great style rather than the girl in the wheelchair.

This is a real challenge for me, though. It's not easy - at all - for me to find clothes that fit me. Stacy London and I actually had a (very) quick chat about this during her talk last year (read about that here). I can often fit in children's clothes, but I don't want to look like a 10-year-old. And many adult clothes are just so big on me that I'd have to tailor every single piece of clothing that I own to make it even remotely fit me. That's why I love sharing stores where I do find clothes that fit me (ASOS, Nordstrom, J.Crew, Banana Republic) - because I'm so excited and appreciative that they do include me in their size range; that they make me feel like they do want me as a customer.

That's why representation in fashion is so important. How can I ever feel like I fit in if I don't see myself anywhere? Clothes really normalize people in a way that's so difficult to comprehend if there's nothing about you that makes you look so drastically different that everyone else. I want to be able to do what everyone else does - to pick my clothes to showcase who I am. I want to be able to use fashion to look differently from everyone else in the way that I choose, not just differently because I use a wheelchair.

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

Monday, February 26, 2018

Wearing Brights

I'm really glad it's almost March - I am ready to be DONE with winter. This winter has seemed particularly rough - the cold days have been bitterly cold, and I feel like I've been so cooped up and stuck inside! I miss my weekends on the deck and lunchtime walks on weekdays.

Last week, we had a 70 degree day that gave me hope that spring wasn't too far away. It made me want to get out of my winter slump of wearing mostly black, and throw some bright colors into the mix.
I got this blue lace skirt a few months ago at J.Crew, and promptly put it in my closet and forgot about it. I found it again when I was looking for something different in my closet, and the bright, royal blue was exactly what I was looking for.

This skirt is still in stock, and I recommend picking it up while you can if you're looking for something to brighten up  your mood like I was - it's perfect for work or weekend, and just so cute! It made me want more brights in my life, so I pulled together some other colorful options, too!

Friday, February 23, 2018

Friday Favorites

Each Friday, I share my favorite things from the Internet in the past week.

The week has felt really long for me - I'm looking forward to the weekend even more than usual! I can't believe how quickly February has flown, and that it'll already be March next week. I'm hoping that means the end of cold weather for the year - I don't know if I can handle much more. 

I've said it before and I'll say it again - I love watching Olympic figure skating. Tessa Virtue and Scott Moir are a pairs team of figure skaters from Canada, and they are AMAZING. They performed this at the Olympics, but the video itself is from an earlier competition. I went down a rabbit hole earlier this week and watched this, plus a bunch of their old routines. They put so much emotion into it - just incredible!



On the topic of Olympics - while it's clear I'll never be an Olympic athlete, that doesn't mean I can't learn anything from them. This article on how to manage stress like an Olympian is useful for anyone - no one knows high pressure stress like someone competing in the Olympics!

This article is a great reminder to anyone who makes videos for YouTube or any other media (so, almost half of the population, really) to put captions on your videos to make sure they're accessible to all. 

Finally, I stumbled on this video and was so impressed. I love going to the symphony, and can't imagine composing a piece where so many instruments have to play together and harmonize. I had to "compose" a few pieces for the piano when I used to play in middle school, and that was hard enough - it was only one instrument! But here, watch Ben Folds put together a song for the whole orchestra LIVE, with no planning. I could not believe it!

Thursday, February 22, 2018

Liz's Nutrition Notes: Mason Jar Salad

Each week, Liz will be posts about a different topic related to nutrition and health. This week, she's sharing a simple mason jar salad recipe.

For this week, I am going to keep things short and simple, and share a favorite recipe of mine— mason jar salads! I love mason jar salads are because:

  • I love salads
  • They are nutrient dense
  • The jars keep the salads crisp and well preserved allowing you to meal prep a week’s worth of lunches and/or dinners
  • There are so many recipes you can try … just google “mason jar salads or look on Pinterest for inspiration.

I hope you try a mason jar salad. If you do, share the photo (and tag your favorite blogger - @theheatherreport). Enjoy!
Image via


Tuesday, February 20, 2018

Taking a Quick Break (Again)

I feel like I just cannot get on top of this semester! Each time I think that I might be getting ahead, something else pops up that eats up all of my extra time. What that means to you is that I need to take a few days off here while I work on a few things in my non-blogging life with pressing deadlines.

I have some fun topics I'm excited to share with you once I'm back, but in the meantime, let me know if there's anything you'd like me to write about - I'm always happy to hear suggestions!

Monday, February 19, 2018

Weekend Day Off


Sometimes I think my life can seem a lot more exciting here than it actually is in real life - between work, school, writing this blog, and trying to get some sleep, there's not always a lot of time left over.  There's always more work that I could be doing - getting ahead in classes, writing more posts ahead of time for the blog - but I was really starting to get burnt out and exhausted. It can get really stressful when you don't leave yourself any time to take a break. I have this issue a lot, and it's something I'm trying to get better at. I'm good at saying no if it's not something that I'm really interested in, but I'm really bad at saying no when it's something that I really want to do but might not actually have enough time for.

When I was an undergraduate, it was basically a badge of honor to talk about how busy you were. We would all brag about how many units we were taking (my college's version of credits), how many activities we were involved in, and, by default, how little sleep we got. This is a really, really unhealthy way to live - when I would come home for breaks for school, I would sleep 12 hours a night for days in a row, trying to catch up on sleep! Clearly, living that way is not sustainable, and not something that I want to continue into my adult life.

I'm really excited to be involved in things that I'm passionate about, but these things still take up time, which isn't something that I have a lot of to spare. And when you're burnt out, it just makes everything seem worse - writing posts takes me longer because there's nothing that I'm excited about, I can't find motivation to work on my homework.

So this weekend, I tried to find some sort of balance. I decided to set aside Saturday as a work-free day. This meant doing some homework on Friday night (definitely not my favorite thing to do), but it was worth it to have a day spent without trying to squeeze in any work!

So Saturday, I went to a family friend's bridal shower and celebrated my mom's birthday with dinner at Senti (which I've talked about before here and here - it's one of my favorite Pittsburgh restaurants!). It wasn't a day spent relaxing doing nothing, but it was revitalizing in a different way - it was great to have fun and enjoy without trying to figure out where I could fit in a few minutes of work.

Sometimes balance isn't about being completely efficient and trying to fit in every minute with something to do, but instead, it's about figuring out when you need to take a break! I feel much more ready to face the coming week now.

Friday, February 16, 2018

Friday Favorites

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

I have to start today's post by saying happy birthday to my mom!! She's currently the official photographer for many of the pictures you see in these posts.

On a much more somber note, I don't want to let this week go by without touching on the tragedy that occurred earlier this week at a high school in Florida. I know it's been all over the news, but I think this video interview - shot by one of the students while he was hiding from the shooter - really drives the message home. 

 But on a happier note, in the spirit of Valentine's Day, enjoy this really cute video of different people dueting on the sweetest love song from the musical Dear Evan Hansen.



As a public health researcher/student, I hear about the opioid epidemic a lot. I really loved this article and infographic about how different people would spend money to combat the issue. The dean of my school was one of the people interviewed!

I'm getting excited for both the Taylor Swift and Ed Sheeran concerts I'm going to later this year (even though they're still months away), so I enjoyed this behind-the-scenes from the End Game music video.



The New York Times' "Modern Love" stories are some of my favorite articles to read each week, and i love that they added a short podcast version with old stories narrated by new people. I talked about my love of the romcom The Big Sick before here, so I couldn't pass up this Modern Love narrated by Kumail Nanjiani and Emily V. Gordon, the writers (and real life inspiration) of the movie.

Finally - remember when I shared Refinery29's "Money Diaries" (here)? Well, as with many things on the Internet, the comments section of those articles can be a scary place. This piece in the New Yorker asks why people are so harsh and judgemental about the way women spend money. It's a really interesting read. I love reading the "Money Diaries," but I read them just to learn more about other people's lives, not to judge them for buying things! (Anyone who knows me would tell you I, of all people, should not judge someone's shopping habits.)

Enjoy your weekend!







Thursday, February 15, 2018

Liz's Nutrition Notes: Amino Acids and Protein

Happy Valentine's [yester]Day!

Last week my sister asked me about amino acids, so I did a bit of reading/writing to give a quick briefing in today's post.

Amino acids are the building blocks of proteins. They are linked together by peptide bonds and the sequence determines their function in the body. Amino acids are important, because they build proteins and proteins perform various jobs in our body:

  • Structural Proteins: proteins are found in many parts of our bodies and are important for maintenance, growth, and repair (i.e. keratin in our hair)
  • Immunoproteins: help rid the body of foreign molecules that pose a threat to our health
  • Transport Proteins: help transport molecules throughout the body (i.e. hemoglobin is a protein that transports oxygen throughout our body)
  • Enzymes: proteins that assist with the biochemical reactions in ours bodies
  • Hormones: some proteins are hormones in the body that play a part in everyday living (i.e insulin is a protein that helps regulate our blood sugars)
  • Energy: proteins are a source of energy

There are 20 amino acids, 9 of which our bodies cannot produce on their own. These are called essential amino acids, because they must be obtained through our diet. In order to memorize the 9 essential amino acids, most dietitians use the mnemonic device TV TILL PMH

TV: Threonine, Valine
TILL: Tryptophan, Isoleucine, Leucine, Lysine
PMH: Phenylalanine, Methionine, Histidine

(Side Note: During catabolic stress, there is an increase in muscle breakdown and thus protein loss. During this time, the amino acids cysteine, glycine, proline, tyrosine, arginine and glutamine are also considered “essential” amino acids.)

Since we need to supply our bodies with the above essential amino acids, it is good to know what foods are good sources. The best sources of essential amino acids are found in animal byproducts: meat, poultry, eggs, fish, and dairy. Animal byproducts have a high HBV (high biological value), meaning they contain all the essential amino acids in the right proportions for your body to use.

While plant proteins are also a good source of protein, they are considered incomplete proteins since they usually are missing one or two essential amino acids. Soy protein constitutes a vast majority of the protein consumed by most people on a plant based diet. However, it is lacking in methionine, and thus an incomplete protein. You can still get all your essential amino acids on a plant based diet, but you will need to eat a vast variety of plants or eat combinations (i.e. beans and rice together) as opposed to just a serving of animal protein with all the essential amino acids in it.

If you are someone who exercises regularly and partakes in strength training/HIIT gym sessions, I actually would recommend supplementing with amino acids to help repair muscles. Although I personally believe in supplementation, I will never force this belief on anyone opposed to it. There is SO MUCH conflicting research about the need to supplement or consume amino acids pre/post exercise. In writing this, I just googled research articles and read two conflicting articles on the National Institute of Health website; one from June 2017 and one from August 2017. What I have learned with research articles is you have to read strategically and understand how the conclusions were reached. I’m always looking for confounders that impacted the outcome as well as other things that I will not go into for the sake of not making this article too long…maybe, in the future, I will discuss strategically reading nutrition research articles. 

So which is better for you - plant-based protein or animal protein? While animal proteins provide the essential amino acids, they also have a higher saturated fat content. On the other hand, plant-based diets often lack a few essential amino acids, yet are better in terms of their lack of saturated fat content. So, my answer to that question is: “we can make an informed decision based on your health background and goals.”

Part of being a dietitian or nutritionist is catering to your patient’s needs/wants/desires. You can preach all you want about what you think is best, but at the end of the day, the patient is going to do what they want, so working with him/her is important in helping construct a proper diet. If you have a patient who hates vegetables, then prescribing a diet rich in vegetables isn't going to work. While it might be a healthy recommendation, it's not feasible if you know the person won’t follow it!







Wednesday, February 14, 2018

H.R. 620, One More Time

Happy Valentine's Day!

I know I just talked about H.R. 620 on Friday (here), and I talked about it a few months ago here, but I realized I never really gave a clear example about why I feel so strongly about this. So I thought I'd tell a story from my DC trip last year to explain.

I talked about going to DC here - it really was a great trip, and the city in general is pretty good with accessibility. But we did run into an issue one night when we went out to dinner. It had been a pretty relaxing day - we went to the National Geographic Museum, and then just planned to walk around a bit before meeting a friend for dinner. We weren't too far from the Washington Monument, so we decided to see if we could make it there before dinner. As many things are in DC, it seemed a lot closer than it actually was - it's so huge that it doesn't seem so far away from a distance - but then you keep walking closer and it seems to stay just as far away! So, we were hurrying to get to the restaurant to make our reservation on time, and didn't have time for a restroom stop before we got there.

Now, for anyone else, this wouldn't be an issue. All normal restaurants have bathrooms for customers! Even Starbucks has bathrooms for customers! And while I had checked to confirm that the restaurant itself was accessible, I hadn't thought to check that they had an accessible bathroom... which, of course, they didn't.

So now, we're in DC, it's time for our dinner reservation, and we're scrambling - pulling out Google Maps on our phones to try to find somewhere nearby (our first search is ALWAYS for a Starbucks. They are consistently one of the most accessible places you can find!). After five or ten minutes of this, and some walking around semi-aimlessly just hoping to run into something, we end up at a T.G.I.Fridays. So, we have to do the awkward thing that restaurants hate, and go in just to use their bathroom, and then head back to our original restaurant to eat. It was annoying, and stressful, and just unnecessary. All of this just to pee!

So that's why I feel so strongly about speaking out against H.R. 620 - because it's things like this that are still my reality, even now. And I really do not want to live in a reality where I have to call ahead everywhere I go to ask about the accessibility of the bathroom - just let me pee in peace!

Tuesday, February 13, 2018

Knowing Your Limits

Today's post is going to be short and sweet, and you may get an idea of what it's going to be about from the title of the post. I have a post half-written that I was hoping to finish in time to go up today, but it's not ready yet, and I don't want to quickly pull together something not very good just to say I'm not missing a day of my posting schedule.

I'm a very Type A person, so being okay with not having a "real" post for today is hard for me! (And, if I'm being completely honest, this mini-post is my way of feeling just a little bit better about it.) But I am trying very hard to know my limits, and know when I have to accept that I can't get everything done. I have work, school, plus a fellowship application that I'm in the middle of, and there just aren't enough hours in the day sometimes.

So I'll be back tomorrow with a thoughtful post that I actually had time to put some real effort into.

Monday, February 12, 2018

Apple Watch Review


For Christmas this year, I got the Apple Watch Series 3. I know that Christmas is long over, but I didn't want to write about it before I had the chance to try it out for a bit.

I had wanted one for a long time, but I wanted to make sure that I would really use it, and it wasn't just a whim. But when the Series 3 came out, I really liked that it had the ability to work without being tethered to your cell phone, so I knew it was time. I was lucky enough to get one as a gift, and I've been wearing it daily ever since!

Obviously, I don't use it for exercise/step tracking like a lot of other people do. But I still think it's really useful. I know there are a lot of smart watches out there to choose from, but I have too many Apple products to think about getting a different kind! I love that the watch works so well with all of the other Apple things I use - it paired so easily with my phone, and after the first time, I never had to worry about it again. It also unlocks my laptop just by being nearby, which is cool!

It's super easy to reply to texts from the watch - you can either speak the text (and I think Siri is better on the watch than on my phone, actually), or you can "scribble" the words and they convert to text and send! I might not use this for a paragraph-long text, but it works really well on shorter ones. It's also great to be able to glance at e-mails as they pop up on my screen - I don't have to look at my phone every 10 seconds for another promo e-mail from another store that misses me and wants me to come back. This is silly, but I also like that you can use the watch to operate the camera on your phone... so if you have the perfect selfie lined up, you can click the watch to snap the picture, rather than having to try to reach the button on your phone, and mess up the picture in the process.

The fact that it works without the phone also gives me a sense of security. I try to be careful, but my phone sometimes ends up slipping off my lap/the desk onto the floor. And since I can't pick it up myself, I have to hunt someone down to pick it up - when I'm at work, this can be difficult because I never know who will be in their office at any given time! So, I like knowing that even if I had to head to class/a meeting without my phone, I'd still have a way to be in contact with people in case of an emergency. My wheelchair once stopped working in an elevator at work, so crazier things have happened!

The sports band that the watch came with isn't bad at all, but I wanted something that looked a little more professional. After a lot of searching, I chose this black leather band from Gigi New York. I love how classic it looks, and it even fits my tiny wrist, which is great. 

If you're looking to get a smart watch yourself, the team at Reviews.com has done great work comparing some of the different models - you can check it out here. They and I both highly recommend the Apple Watch!

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

Friday, February 9, 2018

Friday (Un)Favorites

I usually post my favorites from the past week on Fridays - things I've been reading, watching, or listening to - but I'm putting a pause on that today to talk about H.R. 620.

If you're a long-term reader, you'll remember I've talked about H.R. 620 before, in this post.  Basically, it's a bill making its way through the House of Representatives that would modify the way the Americans with Disabilities Act (ADA) is enforced. The ADA is civil rights law, so right now, the onus is on the person with a disability to file a federal civil rights complaint if they encounter a coffeeshop, store, restaurant, etc. that isn't accessible. And even though the ADA has been around for more than 20 years, there are still many, many buildings that I can't get into.

H.R. 620 would make it even harder for me to file a complaint, and make it easier for businesses to not have to become accessible. I'd have to submit, in writing, a complaint citing exactly what part of the ADA they were violating, and what specific problems I encountered - this is a huge ask for someone who is just trying to get a cup of coffee or meet a friend for dinner. Then, as long as the business was making some sort of progress to become accessible, they could keep pushing the timeline for completion.

The ADA is supposed to make my life, and the lives of people like me, easier - H.R. 620 would do the opposite. It protects the interests of businesses over the interests of people with disabilities, which makes me really frustrated and disappointed, and makes me feel like I don't matter, like my needs are less important just because I use a wheelchair.

H.R. 620 is expected to be voted on next week. I know that there are so many outrageous things happening in our nation this year, and you might be tired of contacting your representatives. But please - take a minute to contact them once more, and ask them to protect the civil rights of their constituents with disabilities. It's so easy (you can even use Resistbot - I explain how here) and can really make a big difference.

Thursday, February 8, 2018

Liz's Nutrition Notes: Feeding Tubes

Each week, Liz will be posting about a different topic related to nutrition and health. This week, she's talking about feeding tubes.

I know Heather has talked about using a feeding tube before, so I thought I'd give a bit of background about tube feeding from a nutritionist perspective today.
   
Enteral nutrition (tube feeding) is when nutrients are administered into the gastrointestinal (GI) tract via a tube. Using tube feeds is a form of nutrition support.  Some patients may need all their nutrients to be obtained via tube feeds and some may only need a portion of their caloric intake to be obtained from tube feeds - it can vary from patient to patient.

You may be wondering what makes someone a candidate to receive tube feeds? Patients who are not meeting their nutritional needs via oral intake and who have a GI tract that is capable of proper absorption/function are candidates for receiving tube feeds. There are MANY causes of impaired nutrition intake - difficulty chewing/swallowing, prolonged nausea, neurological disorders, hyper-metabolic rate, cancer, anorexia, Crohn’s disease, etc…the list goes on and on.

Before any final decisions are made, a dietitian will perform an assessment on a patient to determine whether or not nutrition support is needed. Along with intake history, medical history, and a series of questions, they will also look for physical signs of impaired intake, like unintentional weight loss and muscle wasting. If there is concern with oral intake, a dietitian will usually also start a 3 day calorie-count in order to determine what percent of their nutritional needs a patient is meeting. Based on established criteria, dietitians will then take their assessment/calorie count findings to determine whether or not a patient needs tube feeds.
 
If it turns out that a patient does needs nutritional support, the dietitian will select the best formula given the patients health background. Formulas differ in their caloric density as well as conditions they are best used for. For example, Glucerna is a formula that works well for patients with diabetes; Nepro for patients with renal disease; Vivonex for patients with digestion/malabsorption issues. The caloric density is something that can often be seen next to a formula name - Jevity 1.0 versus Jevity 1.5. The number 1.0 refers to 30 calories/oz; the number 1.5 represents 45 calories/oz. A can of formula is usually about 240 ml (~8 oz). So one can of Jevity 1.0 is about 240 calories (30 cal/oz x 8 oz) whereas 1 can of Jevity 1.5 is about 360 calories. (Heather's note: I use FiberSource 1.5! Extra calories per ounce for me.)

The rate at which a tube feed is administered varies patient to patient. Patients will be monitored on how well they tolerate an initial prescribed rate. Rates are determined based on whether the patient will be on intermittent feeds (i.e.run every 3 hours), continuous feeds (over 24 hours) or bolus feeds (intermittent feeds with rapid delivery). (Heather's note: I do intermittent - overnight - feeds. I tried a bolus in the hospital when I got my feeding tube originally, but it was too much for me at once.)

Tube feeds can be administered by way of different routes. Dietitians monitor a patient’s tolerance when starting a tube feeding regimen via a specific route. Short term tube feeds can delivered via nasogastric tube (tube in nose to stomach), orogastric (tube in mouth to stomach), Nasoenteric (tube that runs from nose and ends in intestinal tract), and/or a combination of Nasoenteric/Nasogastric. (Heather's note: Last note, I promise! I actually had a nasogastric tube when I was in the hospital after a car accident I was involved in - I hated it so much and was so happy when it was removed.)

Long terms tube feeds can run via a Percutaneous Endoscopic Gastronomy (PEG) tube or a Percutaneous Endoscopic Gastrojejunostomy (PEG-J) tube - these options require surgery to place the tube. A gastronomy tube is inserted and resides in the stomach; a gastrojejunostomy tube enters via the stomach and ends in the jejunum of the small intestine. If a patient suffers from certain conditions like gastroparesis (slowed stomach emptyng), the PEG-J tube would be a better option than a PEG tube. If a patient get bolus tube feeds, then the PEG tube is a better option than the PEG-J tube as bolus feeds into the intestine can cause something known as dumping syndrome.

Side Note: ICU patients are often intubated and on tube feeds to meet their nutritional demands while they're hospitalized. Because they cannot speak up if there is an issue with a feeding regimen, dietitians and medical personnel must work together to ensure the patient is tolerating their feeds. It is important for dietitians to monitor these patients to make sure there is not weight loss, electrolyte imbalances, or adverse reactions to the tube feeds formula. Ensuring the right formula and rate helps reduce the risk of the patient aspirating/other complications.

So as you can see, going on a tube feed is not a quick process! There are a lot of things to take into consideration. Heather has discussed going on a tube-feed regimen here. She runs her tube feed overnight via a PEG tube. As she eats during the day, Heather has an idea of how many calories she consumed that day and can adjust her tube feed rate at night accordingly to provide the remaining calories needed to help prevent weight loss. Once again, this is a very complex topic and I touched on the basics so if you have any questions, feel free to reach out!

Wednesday, February 7, 2018

Reflecting on Stacy London's Year of Going Broke

Last week, Stacy London wrote an article for Refinery29 called "Stacy London On Her Year of Going Broke" (you can read it here). In it, she talks about having a really rough year - spinal surgery and the aftermath, a breakup, apartment renovations that sent her back to living with her parents for a while, and an ex's/close friend's death. Her "year of going broke" refers to how she dealt with all of this (or, didn't deal with all of it) by spending without any regards for a budget. She was out of work, and was prepared to be out of work while she recovered from surgery, but as we all know, medical issues don't always go as planned.

I was struck by two big things when I read the article. The first was how true it is that you really never know what's going on in someone's life. I was lucky enough to meet Stacy last year in the midst of when she was going through all of this, when she came to the Frick to give a talk about the power of personal style (you can read about that here). There was absolutely no indication that any of this was going on with her - she mentioned her spinal surgery, but by all indications, she was fully recovered. She was so kind and gracious and took time to have a conversation with anyone who wanted to meet her (and there was quite a crowd who wanted to do so).

The other thing that stuck out, though, was this quote, where she talks about how she spent her time recovering from surgery:

"Shopping provided me with a very interesting version of magical thinking at this time. I imagined parties and places I’d go, the people I’d be with, and when I bought this one last dress, shoe, bag, or necklace, my image in these imaginary scenarios would somehow be complete...or whole. I realize now it was just a fantasy future, to distract me from an agonizing present."

I've had my share of SMA-related issues that have kept me from living my "normal" life. I actually have had spinal surgery, though a different one than Stacy had, but I was in middle school and wasn't doing a lot of online shopping then. But a few years ago before I got my feeding tube, when I was trying desperately to gain weight, a few online shopping packages definitely ended up at my front door. When you're dealing with a health issue that's keeping you from living a "normal" life, a life that you're so desperately trying to get back to, you cling to anything that makes you feel even a little bit closer to that normal. I so badly wanted to be able to gain weight and have energy and go out to dinner with my friends like I used to be able to do so easily. Buying a new top and thinking and hoping that I'd be able to wear it out soon really did make me feel that if I imagined hard enough, I'd be feeling better really soon. When you're not feeling anything like yourself, it's so easy to distract yourself with a fantasy future.

I never hit the emotional or financial lows that Stacy talks about in her article - once I got my feeding tube, I was (and still am!) shocked at how quickly I bounced back physically and got my energy back. While my experience may not be quite as dramatic as Stacy's, I still think it's really interesting how universal the reaction is to avoid and to pretend that things are still normal when something goes wrong. And I love that Stacy ends her article on a positive note, with hope. At some point, you have to accept that maybe you can't go back to the normal that you used to be, but that maybe your new normal will be a wiser one - you can only hope.

Tuesday, February 6, 2018

Valentine's Day Gift Guide

I'm not really a big Valentine's Day person, and never have been - like Leslie Knope, I'm more of a Galentine's Day fan if anything! But when I was younger, my parents would always give me and my sister a little something for Valentine's Day, and that always made the holiday more special. Actually, my mom's birthday is two days after Valentine's Day, and for some (okay... a lot) of my childhood, I had trouble remembering which day was which!

With that in mind, my list isn't full of crazy gifts, but just some fun things to remind you to enjoy the day.
Some people may go out for a nice Valentine's Day date, but even if you're single you can enjoy this Rewined Candle in Rose. A lot of times, candle scents overwhelm me, but I picked this one up on a whim in West Elm one day and was hooked. It just smells so incredibly good! I've now hooked my mom and sister on it, too. It's my favorite candle, hands down.

I think Valentine's Day is best celebrated with some sweets! Sugarfina makes the cutest little desserts - their champagne bears are their best known, they're (non-alcoholic) champagne-flavored gummy bears! They also make these cute bento boxes with three different kinds of sweet treats.

My favorite gift-able dessert, though, are macarons. I know they're a bit of a fad right now, but I really think they live up to the hype! If you're a Pittsburgh local, you have to check out Gaby et Jules in Squirrel Hill. In addition to delicious macarons, they make a variety of other French desserts. Plus, they ship their macarons nationwide! If you want to surprise a friend with a Galentine's Day treat, this is the way to go.

Finally, if you are looking for something a little more substantial, I really like this simple heart necklace from Alex and Ani. It's understated and subtle, but captures the spirit of the holiday perfectly.

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


Monday, February 5, 2018

Super Bowl Sunday, SMA Edition

I will not lie - I am not really a huge football fan, which is basically a sin/illegal if you live in Pittsburgh. I am always excited about the musical performances during the Super Bowl, but the rest of it doesn't really interest me. This year, though, I was excited for something else - a documentary that was premiering on ESPN on Super Bowl Sunday morning.

I talked here about the upside of social media for me - how it's connected me to other people with SMA that I would never have virtually "met" otherwise. One of the people who I recently met on Instagram was Alyssa Silva, another woman with SMA. Unlike me, Alyssa is a huge football fan; specifically, she is a huge Patriots fan. If you live in Pittsburgh, that's even worse than not caring about football at all. But I guess I have to root for the Patriots, because they did something really cool - they've worked with Alyssa to help her raise funds and awareness for SMA.

The number of people who have SMA is really small - the number of women around my age who have SMA is even smaller. It's really so incredibly exciting to see a documentary that helps more people learn about SMA, and learn about people with SMA, too.

You can check out a clip from the documentary below! I highly recommend you watch the whole thing, too.


Friday, February 2, 2018

Friday Favorites

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

Reading... 

The New York Times has been doing some really interesting, in-depth interactive pieces lately. So many people are reading and talking about this article about social media bots - it's really worth a read. Totally avoiding having "bots" as followers isn't really possible, but reading about the pressure that so many people feel to buy followers to gain Internet popularity is really astounding to me! The fall-out from the article has also been interesting to watch - it has really spurred action. 

I love the Olympics, and I'm so excited to watch this years games. Not surprisngly, figure skating is one of my favorite things to watch - it has the right mix of altheticism with gracefulness that makes it so enjoyable to me. This article about skater Jason Brown (who, sadly, did not make this year's team) really describes perfectly why I think he's such a fantastic skater.


Watching...

The article about Jason Brown is so great that I had to include a video of him skating! Watch him skate to "The Room Where It Happens" from Hamilton.




 Listening...

This week's videos are both musical-themed - I saw and loved this mash-up of two songs from The Greatest Showman and Dear Evan Hansen. Both shows were written by the same songwriting duo, Pasek and Paul, and I love how the brother and sister in this video meshed them so well.


Thursday, February 1, 2018

Liz's Nutrition Notes: Refeeding Syndrome in the News

Each week, Liz will be posting about a different topic related to nutrition and health. This week, she tackles refeeding syndrome - something that was on her mind after hearing a national news story.
Meet Liz!
Last week a big news story broke national headlines about parents, David and Louise Turpin, psychologically abusing their 13 children. They were only rescued after one of the children escaped to get help after being cuffed inside. This story broke my heart. Several news reporters mentioned that the children were being treated for severe malnutrition.

Malnutrition is incredibly serious. It is not a simple fix… it's not just “feed them and everything will be okay.” Malnutrition is primarily a result of prolonged starvation - in this case due to abuse and neglect - and causes biochemical imbalances in the body. These imbalances can create dangers when nutrition is reintroduced.

Refeeding syndrome is a condition that can occur when nutrition is initiated in a malnourished patient. Nutrition is either provided via PO (food by mouth), enteral nutrition (tube feeds), or parenteral nutrition (nutrition directly into the bloodstream). In a clinical setting, a dietitian will monitor a patient's electrolytes, because the most common signs of refeeding are hypophosphatemia (low phosphorous in the blood), hypomagnesium (low magnesium), and hypokalemia (low potassium). Other signs of refeeding are fluid shifts, blood sugar fluctuations, vitamin deficiencies, irregular heartbeat, etc. It is important for dietitians and medical teams to work together to address refeeding immediately as it can lead to neurological and respiratory issues as well as death from cardiac failure. (Heather's note: When I started using my feeding tube, I had to start with it running at a very slow rate, and then ramp it up over the next few days/weeks, to make sure that my body could handle the added nutrition and I didn't get refeeding syndrome. Even though I wasn't technically "malnourished," it was still a concern.)

Dietitians play a crucial role in the medical field. There is a lot more that goes into preventing or addressing complications that arise from refeeding syndrome. I haven't gone into too much detail, because this topic is very complex, and can vary a lot from person to person.

My goal today was just to expose you to how dangerous malnutrition is. Refeeding syndrome is just one complication that can result from malnutrition; there are many others. My thoughts and prayers are with the 13 Turpin children who have a long journey to recovery.