Ready for AFC Wimbledon, Art & Writing

Six days till the new season

We get to play seven new teams this year. As many of long-time readers know, I LOVE AFC Wimbledon football (aka soccer). Love the idea of fan-owned teams and the story of the club. Excited for the new season and going to The Local in Minneapolis to watch some matches.Justin watching tv in pub

Art

Hung out at the Minneapolis Institute of Arts on Friday – very accessible and air-conditioned. I have long believed in the stories that paintings and pottery tell, shaping the world around us. Sparked some ideas for my next book and was a cool place to hang out on a hot day.

 

Justin and dad standing in ancient doorway arch

Justin driving his wheelchair in front of paintingWriting

Feel as if I’m always working on my first draft of my second book, a realistic mystery about a girl with cerebral palsy. I’m using my own experiences more in this book. This was a more draining week because I was writing about hospital experiences – they’re not the greatest life experiences…

For a break from that, I keep editing my first book, a thrilling romance with a little bit of sci-fi.

Justin driving wheelchair in art institute hallway with statues

Summer

My brother’s graduation

My brother is a high school graduate and I couldn’t be prouder…oh, wait, that is what my mom would say. I truly am proud of my younger brother for graduating. My younger brother is awesome and I am proud to call him my friend. Through nerf sword fights and surgeries, he has always been there. He is awesome without having to try.

Justin, dad, graduate brother with cap and gown, mom and Grandma all smiling

Summer things to do when you use a wheelchair

Summertime heat is pretty hard on me. My type of CP means I have lots of uncontrolled movement which means my life is kind of like a non-stop workout. So, I like doing cool stuff in the summer.

Some of my favorite things to do include:

  1. Go to a baseball game. If you’re in Minnesota, both the Twins and Saints games are fun. Get shady seats.
  2. Go to a futbol game. Again, in Minnesota, we now have a new Allianz soccer stadium. Again, get seats in the shade.
  3. Find hiking trails. I put this one in for my mom because she’s the one who likes to drag me out on hikes. Fresh air, sunshine, blah, blah, blah… There are a lot of nice paved trails in our state and local parks. I usually have to go somewhere to hike, because we don’t live in a walkable community – no sidewalks and narrow roads aren’t great for wheelchair users.
  4. Movies if it’s in the 90s and/or humid. What movies are you looking forward to this summer? Up next for me is the last in the X-Men saga: Dark Phoenix.

Marketfest Bears that Shine

If you’re in the White Bear Lake area on Thursday, I’m one of 22 Bears that Shine. We’ll be getting recognized at the main stage at 7:15. For more info check out the Manitou Days Facebook event page. Hope to see you there!

A couple things

Football/Soccer

My dad and I got last minute tickets and went to Allianz Field to watch Minnesota United FC vs. Houston Dynamo. We won 1-0. It’s great to be able to do more stuff now that I’m in my fourth week after the surgery.

It was too late to purchase parking online (all looked sold out) so we thought we’d see if we could find wheelchair accessible van parking in a lot near the field. It looked as if there were a lot of accessible parking spots available in the lots but since we hadn’t purchased parking online we couldn’t park there. We ended up finding a street spot where I could drop the lift about a block away. So, free parking is always good.

The stadium itself was amazing. We sat close to the Wonderwall fan area – so it was super charged with energy and excitement!

United is my favorite US team and AFC Wimbledon is still my favorite first love. Maybe someday I’ll be able to go see an AFC Wimbledon match in person! Until then, it’s United FC to watch live soccer!Justin in wheelchair looking at the field in Allianz Stadium

Bear that Shines

Guess what? I got an email that said this, this week:

“You have been selected as a 2019 Manitou Days Bear That Shines! Earlier this year we requested nominations of people who lived in our school district who have made an impact in our community, with the goal of recognizing 22 Bears that Shine (one for each day of Manitou Days). Your name was submitted with a description of why you deserved this award.”

So, if you’re in White Bear Lake on June 13th, stop by Marketfest. I, along with the other Bears that Shine, will be recognized at around 7:15 at the Gazebo in downtown. Watch for more info about this on the Manitou Days website.

I am honored that the person who nominated me recognized how I try to make an impact and be a voice for inclusion in my community. Thank you!

Recasting

I’ll be sedated on Thursday to get my casts replaced. Hoping to see my toes again and that they’ll scratch my legs before putting the new casts on! Please, scratch my legs!!! Ever notice how your legs itch even more when thinking about and writing about it?

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

 

 

8 things to know

Here are 8 things to know when you go into surgery:

  1. Don’t eat or drink after the hospital tells you. For me – that means no food or drink after 10:30 pm on Thursday.
  2. My caregiving team (i.e. mom and dad) should bring a book because they have to wait while I’m in surgery. Mom, what a great time to read the draft of the book I wrote!
  3. Be clear with the doctors, make sure my parents and I understand what’s happening, and ask questions (watch To Err is Human). Use Google Live Transcribe so that I can better understand what’s being said because I have AN (auditory neuropathy & hearing loss)
  4. Plan on watching mindless tv shows or videos because you’re going to be really groggy and pain medicated. Hope that the hospital has the channels that Premier League football and Twins are on.
  5. Bring comfy easy-to-put-on clothes along because when you are discharged, you are going to want to get the f**k out. It’s less painful for me if I have easy-to-put-on clothes because I need other people to get me dressed because I have cerebral palsy (CP).
  6. If you’re staying overnight, don’t think you’ll sleep well because if you are either a light sleeper or a mom, you won’t get any sleep. Especially if you’re like me and have sleep apnea, the beepy thing beeps a lot all night long. And nurses come in and check your pulse, blood pressure, IV’s, etc. My dad is pretty good at sleeping just about anywhere.
  7. Hope that you are not in the hospital for more than two days. The last surgeries I had for putting in my DBS (deep brain stimulation), I was there for a week. That was more than long enough for me!
  8. Get a gallon of coffee because if your parents/guardians/friends/partners are anything like my mom, they are going to need lots of coffee. Thanks to Ronald McDonald House for helping take care of the caregivers and having good coffee for my mom and a nice place for my dad to get breaks, too.

I will have one more post by Wednesday at the latest, going more in-depth about the surgery the doctor will be performing on the big toes and then my mom is going to do a guest post after the surgery. The photos shown are of me in the hospital when I had my DBS surgeries 4 and 5 years ago (yes, did this one twice + one time to have the first one removed!)

Another song for my hospital playlist: Brave by Sara Bareilles

“Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is”

Dad holding Justin in hospital bed

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