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Another day in ‘the Q’

I can’t believe it’s almost officially Spring and we’re still in ‘the Q,’ as people are calling this strange time in history. Governor Wolf recently extended the stay-at-home order until June 4. That being said, I hope everyone is staying healthy and somewhat sane.

There’s officially another Temple grad in our home! Caroline graduated with a degree in psychology and a minor in neuroscience last Thursday. Of course, her commencement ceremony couldn’t be held in-person with all the craziness of the pandemic right now. We made the best of it, though, and had a little at-home celebration instead. Her psychology professors held a nice virtual ceremony. We Zoomed with family and drank sangria while we listened to speeches and waited for her name to flash across the screen. The dogs loved being invited to graduation this year! They’re not minding this whole stay-at-home thing one bit.

It’s crazy to think that I graduated three years ago now! Time really does fly. Here’s a picture of Caroline and Willow having a graduation photoshoot and a throwback picture of my friends and me on the TU big chairs.

Last week was Mom’s birthday and Mother’s Day as well! It’s safe to say we had a busy week celebrating around the house. Birthdays and holidays seem a little anti-climactic in quarantine, but that just means we can redo them once it’s safe enough to venture out into public again. Two days out of the year isn’t enough time to show our love and appreciation for you, Mom. Thank you for supporting me every day and helping me put my life back together, piece by piece. You’re the best.

There’s certainly been a lot more downtime during quarantine. In some ways, it’s been nice, but I know I’m not the only one starting to go a little stir crazy. Reading has been one of the things getting me through the many weekends cooped up at home instead of seeing friends. I’ve never been big on fiction, but it’s kind of nice to sometimes escape reality for a little while. I’m about to finish Quarantine Book #7. Some of the books I’ve read and would recommend are Little Fires Everywhere, Nothing to See Here, Verity, and In Five Years. Give ’em a try!

Another new development: I applied to grad school! Ahhhh. Temple’s Master of Science in Communication Management program begins in the fall. Fingers crossed I get in! I’ll keep you posted.

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Quarantine vibes

Happy Quarantine, everyone! I hope you all are staying safe, healthy, and sane during this crazy/scary/boring time.

For me, quarantine ‘officially’ began a little over two weeks ago. With the rapidly spreading virus, we decided it would be best to take a break from PT and OT until things calm down. Due to my SCI, I’m considered a higher risk. I don’t necessarily have a higher chance of getting sick, but if I did it might be harder for me to recover.  My injury affected my core and chest muscles, so my little baby coughs are pretty weak. I haven’t been sick since my SCI (knock on wood) and I definitely don’t want to start with the coronavirus!

On a lighter note, the dogs are loving the quarantine. With everyone home, they’re definitely getting more treats, cuddles, and walks than they would on a normal day. They are totally unaware of the scary things going on in the world right now. It must be nice to be a dog. I was looking through old photos the other day and came across a picture of Hazel, our 12-year-old yellow lab, when she was just a puppy.  So cute!

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I look funny….but at least Hazel’s cute

Since this time of year is typically the start of the baseball season, I expected the house to be quiet with just my mom and me, but it’s nice to have everyone around. Caroline has been putting her ‘therapy aid skills’ to good use helping me do some PT at home. She’s also been baking a lot — rolls, gluten-free cornbread, cake, cookies, homemade dumplings– trying to make us all gain the coronavirus 15.

Of course, quarantine is the perfect time to chill and binge-watch Netflix. Some recent shows we’ve been loving are season three of Ozark (Netflix) and Little Fires Everywhere (Hulu). We’ve also been doing some painting to pass the time. I was never very artistic before my SCI (and I’m still not now) but here are some of my recent left-handed doodles.  Mom also single-handedly completed a 1,000-piece puzzle, which you can see in the background of this photo. Way to go, Mom!

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Hopefully, within the next few weeks or months, the coronavirus will subside and life will go back to normal. I’m definitely used to staying home and laying low more now than I was before my injury, so this whole social distancing thing isn’t super new to me. I’m still itching to go out and see friends, but I guess Zoom and FaceTime will do for now.

It’s important to stay informed about everything going on, but remember it’s OK to take a break from the news and social media as well. Stay safe, healthy and…home! We will get through this together.

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Chef Mary

Hello there! Welcome to Mary’s Cafe. Our specialties include macaroni and cheese, cauliflower crust pizza, and waffles with fried eggs. Take a seat and enjoy!

Before my injury, I loved to cook. I was always looking up new gluten-free recipes on Pinterest and trying them out. Since my SCI, I haven’t done much in the way of cooking. I typically find the recipes then direct Mom how to cook them.  I thought cooking would be pretty much impossible with only one hand. Turns out I was wrong!

When I was at Shriners rehabbing after my tendon transfer, my OTs, Justine and Sarah, had me in the kitchen chopping veggies and baking cookies to strengthen my arm back up. My kitchen creations there inspired me to try cooking at home, too. They gave me a rocker knife and helped me find a single-handed cutting board, pictured below. I highly recommend both of these products for amputees or anyone with paralysis in one arm/hand.  

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For the past several weeks, I’ve been participating in a coaching study with two OT Doctoral students at Jefferson, Bernadette and Taylor. The gist of the study is that I set a handful of feasible goals and the students check in with me every week to see my progress. So far, it’s been a great experience!

One of my goals has been to continue gaining independence in the kitchen and since our kitchen is not very wheelchair-friendly right now — hence the dent in the fridge — we made my own little kitchen! I feel like I’m back in my Temple dorm room circa 2013 with a mini-fridge and toaster oven right in my bedroom. My menu is not very extensive yet, but I’ve independently cooked myself breakfast and lunch several times so far. Trader Joe’s gluten-free macaroni and cheese is my current go-to. Yum. 

It feels good to be taking little steps toward more independence like making some of my own meals. My next step is to add a Keurig to my makeshift kitchen so I can make coffee or tea whenever a craving hits. I always need that 2 pm caffeine boost. If you ever need one, stop by my cafe and I’ll whip you up something nice.

As always, thanks for reading. Talk soon.

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Sweet Dreams

In my dreams, I walk. Literally and figuratively.

A couple of weeks ago, I had a dream so vivid and funny that I just have to share. I was in the King of Prussia Mall (it was unclear who I was with) and I was able to walk, but only if I was pushing a Swiffer mop. Some people use walkers. Some people use canes. But I, apparently, use a Swiffer. Totally a normal thing to be walking around a mall with, right?

Now, it’s not uncommon for me to walk in my dreams. Actually, it’s uncommon for me to be in a wheelchair in them. Usually, I’m able to walk, not perfectly, but I am able to walk, sometimes with a little help. The Swiffer (Mom’s favorite cleaning tool) is a new twist though.

I’m not sure what my sleeping mind was trying to tell me … maybe I miss cleaning? Nah, can’t be that. Anyway, I thought you might get a kick out of my silly dream. I know I did.

In other news, I am finally back doing some physical therapy at Magee! I can’t believe it’s been over a year since I did any formal physical therapy there. I had to be really careful with my arms during my surgery recoveries, so I couldn’t do any PT, just OT with my friends at Shriners. I had an evaluation at Magee last week and will be going twice a week for the next couple of months. I’m looking forward to being more active, getting stronger again, and seeing some of my old Magee friends.

That’s all for now! I hope 2020 is treating everyone well so far.

Sweet dreams!

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Thanks for the help, Swiffer.
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A Letter to 2019

Dear 2019,

I can’t say I’m sad to see you go. You’ve been a long, challenging year — both emotionally and physically — to say the least.

You brought the loss of loved ones. I will never forget them and will cherish them in my heart forever.

You also brought sacrifice. I had three elective surgeries within about seven months. Although I knew it wouldn’t be easy, I definitely underestimated how long and frustrating my recoveries would be. Weeks in casts and splints, months of immobilizations and restrictions, and the temporary loss of independence took a lot out of me and tested my patience.

Despite the difficulty you brought, there have been happy times, too — some new physical gains, new friendships, a snazzy tattoo, volunteering, some work from home, a beach vacation, lots of family time and puppy snuggles, of course. Thank you to my family (shout out to mom!) for taking such good care of me all year long, even when I’m grumpy. And, of course, thank you to all my great doctors, PTs, and OTs.

All in all, 2019, you provided some ups and downs, but I made it through stronger than I was before. And maybe that’s all that really matters, right?

So, adios, 2019!

And here’s to you, 2020. I’m ready for ya.

– Mary

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My Tendon Transfer Experience

Happy fall, everyone!

I can’t believe summer is over and the holidays are right around the corner. It’s been a while since I’ve given an update on my progress. To be honest, it’s been a long, challenging two months but good things are happening. Here’s a little glimpse into what I’ve been up to:

On August 22, I had surgery on my left arm. Before my SCI, it was my nondominant arm, but since then I’ve had to rely on it for everything because my right arm is really weak. I was really torn about having the surgery because I knew it meant giving up my arm for a couple of months. But after talking to several people who had it done and doing a lot of research, I decided to go for it. Sometimes you have to take one step backward to take two steps forward, right?

My left arm worked pretty well and I was independent in a lot of things before the surgery, but my left triceps was absolutely nonexistent. If I was lying in bed and reached up, my arm would fall and smack me in the face. Let me tell you, it’s not fun (and that’s just one example). Dr. K and Justine and Sarah, my awesome OTs at Shriners, decided I would be a good candidate for biceps- to- triceps tendon transfer surgery.

Basically, you have three different muscles in your arm that work together to flex your arm up towards your face — the brachialis, brachioradialis, and the biceps. Turns out you don’t need all three muscles to still be able to feed yourself, brush your teeth, and do everything else that requires elbow flexion. It’s pretty genius that our bodies come with all these spare parts — the gracilis, biceps, appendix, etc. During the surgery, the biceps brachii are snipped and wrapped around the elbow to act as triceps.

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After surgery, my arm was in a straight cast for a week. My friend Erin drew a cute picture of a wiener dog on it. Very fashionable. Since then, it’s been in a brace so it can’t bend past the allowed range and I’ve been going to Shriners for OT almost every day. The biceps are used for flexion, so I am in the process of retraining my brain to use them for extension. It’s actually really hard! It takes a lot of patience and practice during OT, but I’m starting to get a hang of it.

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Right now, I’m allowed to bend my arm to 90 degrees and I’ll get the brace off soon. I’m super excited about that. I will finally start to work on strengthening it back up and using it to do things independently again. Thank God for that because Dad is a terrible teeth brusher and Mom needs to work on her makeup skills.

Another exciting development is that the gracilis in my right arm is finally coming alive. It’s not strong enough to make much movement yet, but the whole muscle contracts now! It’s a start. The doctors from Shriners and Penn seem very excited and optimistic that it will continue to strengthen over the next 18 months.

This whole process has been a test of my patience and at times has been a little scary. But with every new movement I know I’m headed in the right direction.

Until next time! Thank you for reading.

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Five Smiles #3

Before I jump in, I’d like to say thank you for all of the birthday wishes on my previous post. I’m still in denial that I’m actually 25, but I had a great birthday! I went out with some friends in Philly to celebrate on the 3rd, had a delicious gluten-free cake with my family at home on the 4th, and wrapped up the celebration visiting my Grandma and Uncle John in Massachusetts on the 5th. It’s safe to say 25 is off to a good start.

1) I had an abdominal surgery about a month ago and today was my follow-up with my doctor at Jefferson. He said that everything looked great! I’m only a month out from the surgery, but I’m incredibly happy with the results so far.

2) Do you remember when I wrote in a previous post that I thought my van would spontaneously combust one day? Well, I was right. I want to preface story this by saying that everyone is fine and after three days at the auto shop, the van is home, happy and healthy (at least for now). Anyway, my mom went into the Gap to buy a gift card and I decided to wait in the car. All of a sudden the car made a weird noise and white smoke started pouring out of the front of the car. I could feel a panic attack brewing. So, I followed my first instinct, called my mom and shouted: “Mom the car is on fire!” My mom sprinted out of the store, turned the car off and immediately got on the phone to the car mechanic. Long story short, we were stranded in the Gap shopping center for almost three hours as the car was towed and we waited for a wheelchair-accessible transport to take us home. It was a bit of an inconvenience for sure, but in the end, wasn’t so bad. We got açai bowls while we waited, had some nice conversation with the lovely people who drove us home, and the car problem ended up not being too serious. Phew.

3) Willow has been extra cute lately so here are some recent pictures of her enjoying summer. Dad brought her home this funny doormat from his work trip to Arizona. She loves trying to steal Dad’s fresh-picked veggies off the back porch. Green beans are her favorite. It’s crazy to think that she will be a year old next month. They grow up so fast!

4) My dad found a cute little brunch spot in Wilmington called the Bellefonte Cafe and we all went over the weekend. Despite the heat, it was nice to relax on the patio and be with everybody. My sisters are both going back to school next week so it’s going to get pretty quiet around my house.

5) I have another surgery tomorrow! This is the last one that is currently scheduled. I’m having a biceps-to-triceps tendon transfer on my left arm, which is my stronger arm. Basically, they just take a piece of your biceps and flip it into your triceps. After some occupational therapy, I’ll be able to push off of surfaces easier, reach overhead without my arm falling and smacking me in the face, etc. It’s a pretty routine surgery, but out of all the surgeries I’ve done so far this one is definitely giving me the most anxiety. The looming loss of independence for a couple months during recovery is nerve-wracking. However, I’ve talked to a lot of people who’ve had it done and they say the new strength you gain is absolutely worth it. So, here goes nothing!

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Two years

Today is the two-year anniversary of my spinal cord injury and I’m feeling all the feels — nostalgic, mopey, scared, but also thankful. I wasn’t going to write anything today because I thought it would make me depressed, but I’m trying to look on the bright side (and sometimes writing helps).

Looking back, I thought I had it all figured out. But God had a different plan for me and I know I’ll be OK. I can feel real progress being made. I have a surgery tomorrow that is going to drastically increase my independence, and I’m finally starting to feel some twitches in triceps! It feels empowering that I’m taking my recovery into my own hands. I’m two years stronger than I’ve ever been before and I’m full of hope. Thank you, as always, for your support.

Until next time,

Mary (and Willow)

Willow loves the camera.
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Summer reflections

The past month or so has been busy, busy, busy and I have many updates to share with you all. But first, here’s a funny story from our recent family trip to Hilton Head, South Carolina about a month ago. After nine hours of all of us driving in the van — cramped and up to our ears in bags, suitcases, and an extra wheelchair — we were all so relieved to have made it to our sunny destination. Personally, I was just relieved that we made it all the way there without killing each other! Just kidding.

So, we parked the car and the fam hopped out one by one. My Mom went to open the passenger side door where the wheelchair ramp is and it wouldn’t budge. I was stuck. ‘Oh, fantastic!’ I thought. I suddenly found myself struck with anxiety and claustrophobia. I needed some fresh air. Luckily, we found a nearby mechanic who fixed us up and freed me, however, I’m fairly certain the van is cursed. My friend Alex and I were going out for dinner the other day and the door nearly fell off! One of these days this van is going to spontaneously combust or something.

Aside from some initial car trouble, we had a really nice time. This was actually the first family vacation we’ve all taken together in a long time. We were supposed to go down to the Outer Banks in North Carolina about two years ago, but yours truly messed that one up by having a stroke. Oops. The whole resort in Hilton Head was extremely accessible. There were even a couple nearby beaches equipped with beach mats, so I could roll right down to the shoreline. Here’s a picture of us during one of the many unsuccessful, mother-forced photoshoots. It was pretty windy.

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Adios, cast!

On Wednesday, I had my six-week checkup at Shriners. The place was hopping; Dr. K had just gotten back from doing some mission work with kids in Ethiopia, so everyone was eager to see him — especially me! I couldn’t wait to get my cast off. I had been wondering, with a mixture of anxiety and excitement, what was going on under there and how my arm would look.

Dr. K and his orthopedic team started off by draining my leg — I’ll spare you those lovely details. Then they got to work removing my cast. I’ve never broken a bone or had any reason to be in a cast before, so I wasn’t sure what to expect. The saw they used was pretty cool. Even though it sounded terrifying and cut through the fiberglass cast with ease, the blade couldn’t cut you if it hit your skin. Medical gadgets are pretty amazing.

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The big reveal!

I was worried about it possibly being moldy and gross under the cast, but Dr. K said everything looked great and was headed in the right direction. The incisions are healing up nicely and the new flap on my triceps (where the new muscle and nerves are) appears healthy. Yay! Good news. My arm may not be the prettiest anymore — there are quite a few scars — but, oh well, it’s worth it. And it’s just nice to be able to see my arm again! Continue reading “Adios, cast!”