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

 

 

Random thoughts about feet & stuff

These past two weeks, I’ve been having thoughts on my feet and stuff.

  • My feet are a pain. And because of that, I am in pain. It’s a non-stop hard-to-be-distracted-from kind of pain. My mom asked me what number yesterday. Because that’s what my mom does. I said 5 to 7. I’m waiting to see my orthopedic doctor in about a week.
  • Pain makes me exhausted. It’s hard to hold my head up when I’m exhausted. When I’m in pain.
  • leg wrapped in pillow strapped in wheelchairHere’s the thing. I don’t stand, not even to transfer to/from my wheelchair anymore because it’s too painful. Ankle-foot orthotics (AFOs) never worked very well for me because of my strong uncontrolled movement – my feet fought the AFOs and eventually I said “no more.” So, now my feet, are misshapen, aching, bent, etc. I don’t know what’s next for my feet.
  • Okay – it just is – you get used to it – all the things I tell others and tell myself. You get used to it when you’re me. Yes, I deal with it. We deal with it. But, sometimes it really just does suck.

Other random thoughts:

  • I have 140 pages written in my book.
  • I went to the Legislative Update by the Minnesota Council on Disability on Monday afternoon to learn about different legislative efforts for the next session. Just because the election is over doesn’t mean there isn’t a lot of work to do during the upcoming session. It’s important to make our voices heard! Finally saw my picture with former Senator Dave Durenberger in the hallway between the Senate Office Building and the Capitol. Cool!
  • I took a short break from my social media break. I had to jump on Twitter for the Project 4 Awesome fundraising live video by Hank and John Green Friday to this morning. They’re my favorite vloggers (video bloggers) and authors. Maybe next year, they’ll caption the live stream, so that people with hearing loss, who need closed captioning, can be included. I love that they’re able to raise over $1.5 million for good causes and wish that they’d also caption the livestream.
  • Last Doctor Who for the season is tonight. Will recharge my DBS battery and watch my now favorite Doctor! This has been a great Doctor Who season! If you got tired of watching in the last couple of years, you should give it a go! 

Random thoughts

Just how accessible are video games when you only have use of one finger and a joystick mouse?

I started playing Fortnite two weeks ago with one of my personal care attendants (PCA). Yes, my strategy is to be a pacifist, just like my favorite author and vlogger, John Green, and camp out in bushes until most of the other players are dead.

So far, I have noticed that the game isn’t very accessible for me because it relies on a lot of keyboarding to be able to navigate my character around the virtual world. I rely on my two-handed PCA who can keep up with the keystrokes in a fast-moving game to move our character to the safest looking bush inside the eye of the storm…and I have one finger to target and shoot. We’ve finished second place three times. But, my character is a pacifist, so I usually end up dying in the end. Wonder what would happen if the other final character refused to shoot me? Would there be peace in our time?

Music videos with captions

One of my favorite bands, Imagine Dragons, has a lot of music videos with captions. I use CC for everything that I watch and music videos typically aren’t captioned. So, it’s really hard for me to understand the words of the songs. Thanks Imagine Dragons and other musical groups who caption their music videos. Can’t wait until someone starts providing real-time captioning at rock concerts. That would be awesome!

Check it out: Natural by Imagine Dragons

Medical Marijuana update

I’m taking a blend of THC/CBD oral suspension before bed. I have noticed this is helping me sleep much better. With the medical marijuana, I’m able to fall asleep and stay asleep without waking up as often during the night. My parents are enthusiastic not to be getting up every hour or two to readjust me at night.

I was also taking a mostly CBD oral suspension in the morning to help with my jerky movements and pain in my hips, knees and feet. I tried that one for a bit over a month and have taken a break from it. I’m not sure if it was the CBD or if maybe it was just hot weather, but I was feeling very low energy and tired during the day. It was kind of helping with the pain but not a lot. I may try again in the fall, try adjusting amounts, and see if it makes a difference or if I think it’s making me too tired.

edX class

In a previous post, I wrote about taking a break from college. I have started taking a Public Speaking course through edX. I love that the lecture is captioned and has a transcript. The site is easy to navigate and very accessible for me.

Have an awesome rest of your summer!

Turtles All the Way Down

Before I start, for those of you who have not read the book I am going to talk about, this doesn’t have any spoilers for Turtles All the Way Down by John GreenThe book covers a very serious issue regarding teens, mental health. If you or a loved one is dealing with a mental illness, let the person know there are people who love them. The second thing is get help. John Green reinforced this on his recent book tour, too. It was an awesome book tour and I was lucky to see him and his brother, Hank, in Minnesota!Turtles All the Way Down book, poster, bag and tour pamphlet

I think  Turtles All The Way Down, is, by far, one of the best teen books with a character with a mental illness. The narrator, Aza Holmes, starts off by stating, ”AT THE TIME I FIRST REALIZED I might be fictional, my weekdays were spent at a publicly funded institution on the north side of Indianapolis called White River High School, where I was required to eat lunch at a particular time—between 12:37 P.M. and 1:14 P.M.—by forces so much larger than myself that I couldn’t even begin to identify them. If those forces had given me a different lunch period, or if the tablemates who helped author my fate had chosen a different topic of conversation that September day, I would’ve met a different end—or at least a different middle. But I was beginning to learn that your life is a story told about you, not one that you tell.” John Green has a way of understanding the teenage mindset that is so powerful.

Aza is a young woman who has Obsessive Compulsive Disorder and a callus on her middle finger from continuing to crack open the cut because she goes into these thought spirals, leaving her to think that she has a microbial infection, C-Diff. Let us take Aza’s words when she goes into her thought spiral, particularly when she makes out with Davis, a billionaire’s son whose dad goes missing. ”I felt his hand on my shoulder. I spun around and squirmed away from him. My breath running away from me. Dots in my vision. You’re fine he’s not even the first boy you’ve kissed eighty million organisms in me forever calm down permanently altering the microbiome this is not rational you need to do something please there is a fix here please get to a bathroom.” the thoughts are obsessive and downright compulsive, taking a hold of her and causing the stoppage of making out.

Aza goes on to talk about the ”invasives” with Dr. Singh, a psychiatrist who quotes a lot of people. For example, when Aza quotes Descartes’ ”I think therefore I am,” ”No, not really. A fuller formation of Descartes’s philosophy would be Dubito, ergo cogito, ergo sum. ‘I doubt, therefore I think, therefore I am.’ Descartes wanted to know if you could really know that anything was real, but he believed his ability to doubt reality proved that, while it might not be real, he was. You are as real as anyone, and your doubts make you more real, not less.” Descartes’ philosophy plays a role in the book that makes the book so precious and powerful.

John Green opens up about him having OCD in this sometimes dark and haunting novel and I think that experience matters in books. At the end of the novel, John Green writes, ”I, a singular proper noun, would go on, if always in a conditional tense. But you don’t know any of that yet. We squeeze his hand. He squeezes back. You stare up at the same sky together, and after a while he says, I have to go, and you say, Good-bye, and he says, Good-bye, Aza, and no one ever says good-bye unless they want to see you again.”

My recommendation – read this book right away and don’t forget to be awesome! #DFTBA

See my post about tax cuts next week. Goodbye.