Day 10

Guest post by Mom (Kris Schulze)

Justin had his followup visit with his surgeon on Friday and all is looking good. We ended up removing part of the cast to be able to see the incision. So, now he has a cast over his entire foot since it was the only way to recast the part covering the big toe without redoing the entire cast. This cast will need to be replaced in 3 weeks. He will have light sedation for that as it’s the only way to hold his leg and foot still and steady enough to be able to recast. We’re still looking at the end of June for removing the pins which will be a heavier sedation procedure.

All in all, it’s been a pretty exhausting week for all of us. All transfers and lifting require 2 caregivers now. Pain meds in the middle of the night means 2 of us up – dad to hold Justin up and me to give him meds and drinks of water. The past couple nights he’s had some longer stretches of sleep between needing meds or readjusting legs and pillows (waking every 3-4 hours instead of every 1-2 hours).

We’re trying to cut back on the heavier duty pain meds during the day so that Justin has the energy to do a bit more of the things he loves to do – like read all of the well wishes on Facebook and his blog (thanks all for those!), finish reading a book, and catch up on his favorite YouTube videos (John and Hank Green, Daily Show, John Oliver, and music videos). This first week, though, time upright was mainly spent eating meals and towards the end of the week was able to spend a bit of time on his computer. Highlight of the week was watching AFC Wimbledon’s last match – they stayed up in the 3rd tier (Justin made me add this sentence)! Most of his time this week though was spent surrounded and propped up by pillows either sleeping or watching movies. Justin sitting in wheelchair with casts on legsHoping that this next week, Justin will have less pain, more energy and be clear-headed enough to write his own blogpost and have more time at his computer! The computer is where he is most independent – where he can read, watch what he wants, write and connect with the world. And, really hoping that we all get more sleep!

Innovative idea for the week – after Justin scraped the inside of his knee with his cast and multiple knuckle scrapes for his dad and me – his dad cut off the toes of his old Ankle Foot Orthotic (AFO) socks to cover up the rough cast. Justin now has scrape-free casts.Justin sitting in wheelchair by computer

 

 

Wheels in Winter

Unfortunately, AFC Wimbledon did not win today meaning that they’re not going to the quarter finals of the FA Cup. Ahhhh…

My good news story for the day is even though we’ve had a ton of snow over the past couple weeks, downtown Minneapolis near The Local had clear sidewalks and curb cuts. It’s usually kind of nerve wracking to go downtown after lots of snow, because it’s hard to find street parking spots where we can drop my wheelchair lift. And, it can be really hard to move around if there’s a bunch of snow piled up on sidewalks and blocking curb cuts. For example, last year when I went to a concert, I got stuck trying to get back to my van because the snow was piling up. So, great job City of Minneapolis and businesses near The Local! I had no problems getting from my van to my soccer/football match on time with no drama.

Breakfast at The Local was awesome! You have to try the French Toast Bites! Justin in his wheelchair and dad crossing street

It was really nice having the Minneapolis experience this weekend, because just a week ago, was this example closer to home. Check out the push button to open the automatic door on this building. Don’t think any wheelchair can get close enough to reach that one.
Justin in wheelchair outside door with pile of snow in front of accessible push button

Other stuff coming up this week:

  • Disability Day at the Capitol is on Tuesday, 2/19/2019! I’ll be there making my voice heard for disability rights!
  • Friday is my follow up with the orthopedic ankle/foot specialist and hope to figure out what to do with my painful big toe.

Never give up – GOAL!

Last Saturday, AFC Wimbledon, a third-tier fan-owned football team, beat West Ham United, a Premier League team, in the fourth round of the FA Cup. I don’t want to alienate people who support West Ham, so I am not going to talk about the game. Instead I am going to tell a personal story about never giving up.

Five years ago, I tried deep brain stimulation (DBS). I wanted to see if it would be helpful in downplaying the jerky movements that are completely annoying and make it hard to do what I want to do. Two weeks after the second surgery, my stimulator was inflamed. I went to the emergency room right away and found out I had a staph infection. I had two choices: take everything out (stimulator in my chest with wires threading up my neck to the top of my head and then leads going to my basal ganglia deep in my brain) or keep it in for as long as possible.Justin laying in hospital bed, brother sitting in chair with game controller

I knew that I would have to put heavy duty IV antibiotics in my system, but initially wanted to take it out. I was hurting and you should never make decisions when you are in severe pain. Along with my parents and doctors, I decided to keep the DBS in as long as possible to see if it helped me more easily do the stuff I loved to do.

Flash forward three months, the infection couldn’t be managed with the antibiotics. It had traveled from my chest to my head and the DBS had to be taken out. The worst part was that it was working. I was sitting up on the side of the bed (check out the video links down below) and I could make a peace sign. You may think “big deal,” but it’s the first time I had ever been able to do these things. I could even flip people off – every 15-year old should be able to flip someone or something off occasionally.

One year later, I tried DBS again – without a surgical-site infection this time. I didn’t give up on my hopes that DBS would make my life a little easier.

Congratulations to AFC Wimbledon on making it this far in the FA Cup after losing almost all of their league games. Every Saturday, I watch them because I’m a huge fan. Many of my readers know that I’ve been dealing with a ton of leg and foot pain. Whenever I watch AFC Wimbledon, my pain is pushed to the side. My message to AFC Wimbledon – don’t give up!

You’ll find me at The Local Restaurant & Pub in Minnesota on 2/16 cheering on my favorite English Football team!

Justin watching tv in pub

Update on the foot/leg pain

No botox this week because doctor wants me to see another orthopedic ankle/foot specialist to determine what we do with my semi-dislocated-ish toe. It was the coldest day ever in Minnesota for this doctor appointment! Negative 50 Fahrenheit windchill!!

Dad putting hat on Justin who is bundled up in wheelchair

YouTube videos of me after DBS

Justin talking about DBS between the first DBS Stage 1 and Stage 2 surgeries

Justin sitting 7/20/15 – sitting 5 weeks after the second DBS surgeries

Justin sitting 5 months after DBS

Previous posts about my DBS story

Faith in the Midst of Bewilderment

Frequently Asked and Unasked Questions

 

Too much social media

Social media is getting too many hours of my life, time that I could be using to read, write and get work done. Because of this, for the next couple of months I’m going to cut back my time on social media so I can focus on writing my first draft of my book and my blog.

I also need to learn more about changes to how my staffing will work with my Consumer Directed Community Supports (CDCS) waiver funding which is how I pay for support staff and other adaptive equipment costs not covered by health insurance or Medical Assistance. Minnesota Department of Human Services (DHS) is now requiring that I become my own small business to continue hiring my own support staff. Up until now, an agency had been the employer of record for my staff. There’s a lot to learn and lots of paperwork for my parents and me to wade through.  I’ll still be here, but I won’t be on Facebook or Twitter as much.

Here are three reasons why I am putting some limits on my social media:

  1. Experience: In my book, my two main characters are on the run. They can’t exactly use social media to contact anyone. So I plan to experience what my two characters are going through, to give a better description.
  2. It is time to shut down: After reading An Absolutely Remarkable Thing by Hank Green (absolutely amazing book!), I have been doing some rethinking about how I use social media. Sometimes it doesn’t feel like a very healthy reality.
  3. I have too much other work to get done and there’s lots of other fun stuff to do. Like on Monday afternoon, I’m going to the Minnesota Council on Disability’s Legislative Forum on Disability. Being a disability rights and inclusion advocate means I need to stay informed about legislation that impacts my world.

Starting next week, I’m taking a break for at least the next several weeks, and then will be checking infrequently. You can message me through my blog and my mom will be keeping an eye on my Facebook @JustinSmithWrites page if you are trying to reach me. My mom will tag me in any of her Facebook or Twitter posts if anything cool is happening with me.

Have you ever had a social media blackout? Any tips on how to survive it? Wish there were some football (as in SOCCER) matches to go to! At least I have AFC Wimbledon to watch online and FIFA 19 to play on my PC. GOAL!

Smiling Justin sitting in wheelchair at soccer match in US Bank Stadium

Happy summer

I’m having a pretty low-key summer. My mom and younger brother are ditching me and my dad to go spend almost 3 weeks in Germany. My brother’s been studying German since 6th grade and my mom studied for a semester in Germany a really, really, long, long time ago. Mom, could you please bring me back some World Cup Germany Futbol socks!

Other stuff happening this summer

Some Sports

FIFA World Cup Russia 2018 logo

I’m having an awesome time watching the World Cup. Thrilling. Exciting. Nail-biting.

I am a huge fan of AFC Wimbledon so have been following them online. They are a fan-owned team.

Some Medical Stuff

I just started trying out medical marijuana and will let folks know how it’s going in a month or two. The hope is to reduce pain in my knees, hamstrings, and hips and calm involuntary, jerky movement and muscle spasms. Minnesota has approved the use of medical marijuana.

Some Writing

Continuing to write my action-packed, mystery, romance novel. I’m on page 86. I’m going to get a bunch done when my mom and brother are on vacation.

Some Politics

The Minnesota Primary is coming up on August 14. I am going to volunteer for the candidates I support. If you live in Minnesota, remember to go VOTE! It’s important! If you’re not around on August 14, you can vote by mail or in person through August 13. Check out more information about voting at the Secretary of State’s website.

Some Ideas for the Future

My dad and I are going to go tour Augsburg University on Wednesday. I have been taking classes at Century College, a community college near where I live. I’ve heard really good things about Augsburg and would like to see if it might be a good fit.

Don’t forget to be awesome!