Life as I Know It

I haven’t written much lately. I try to be positive about living my life and don’t always share when life gets hard. Lately, it’s been kind of rough, though.

I thought I’d be excited to get my new wheelchair. Yesterday, I about drove into the garbage cans at the Mall of America, when my joystick got stuck in drive. Luckily, my mom, got to me and turned the chair off before I crashed. How do I be independent when I can’t count on my equipment? My new chair has been one frustration after another. First, I am having a difficult time getting the seating to work well for me and it took about three months to get the appointments for working on seating in the first place. Because of my movement and muscle tone, everything needs to be customized and incredibly sturdy. Also, the joystick just broke after only three months of use. I continue to work with my clinic’s seating specialist and physical therapist, our equipment provider, and vendor to try to figure it out. Wish me luck in trying to get this chair to work. Without a working power chair, I feel excluded from the world.

Pain. Pain. Pain. As I’m getting older, I spend a lot more time in my wheelchair (yes, the non-working one), even less time weight-bearing or exercising, and that is taking its toll. My hamstring, ankle and knee on my right leg have been a 6-8 on a 10-point pain scale over the past several weeks. Pain is exhausting! I’ve seen an orthopedic doctor and now waiting to get into my physical rehab doctor to see if it’s time to try botox again. Haven’t done that since elementary school and never tried it on my leg. Hoping my medical team can help figure out how to help me feel better.

And my family is a pain, too. Oops, I mean they’re in pain, too. My dad has a bulging disk in his back which is causing him a lot of pain. He’s my main caregiver so need him to feel well. My mom is doing a lot better after having foot surgery in November. We try to take turns on being messed up in our family. So far, Nathan, never has taken a turn on being messed up. My younger brother is really cool and helpful!

On a lighter note (because even when life is feeling a little upside down, I try to focus on the positive), the fifty-second Super Bowl was in Minnesota, my home state. I wasn’t able to get to any of the Super Bowl Live events, because, see above. But, it was fun to watch on tv. The game was awesome, even though the Vikings weren’t in it.

Next up, I’m going to the Walk the Moon concert at the Palace Theater in a couple weeks no matter what! And I’m preparing for some March Madness! Hopefully, just the basketball kind, and not related to medical madness!

P.S. Call your US House member and ask them to vote “NO” on HR 620, a bill that will weaken the Americans with Disabilities Act (ADA).