I am done with my first draft of my book!

Exciting week for me. The first draft of the book I’ve been working on for the last two years is finished and it’s exciting. I proved to myself that I can write a book. Not sure it’s a very good book or that anyone would want to read it. But, I can write a book.

What did I learn about writing a book?

  1. It’s hard. Being persistent and sticking with it when I couldn’t find ideas for what was next was hard.
  2. It was good for me to write on my own. I didn’t want my parents or others to read what I was writing because I wanted to prove to me that I can do this. I didn’t want other people’s ideas or feedback to influence my story for my first draft.
  3. It’s time to take a break from this story. I need some time away before going back and starting to edit.

In the meantime, I have lots of just typical life stuff to deal with:

  • Meeting new case manager/social worker today since I’ve moved over to adult social services.
  • Health stuff (stupid toe!) – Botox is scheduled for Wednesday.
  • Need to do all the paperwork to move to the new Fiscal Management Support model for Consumer Directed Community Supports waiver. I mentioned this in a previous post about how now MnDHS is requiring clients to become their own small businesses to hire and manage their support staff. Lots of paper work involved!
  • Keep writing in my blog.
  • Stay warm because it’s like 50 below Fahrenheit here in Minnesota.

What is up in my world?

Celebrate!

Hey, how awesome was last night’s Governor Walz and Lieutenant Governor Flanagan Inaugural Celebration?  Super AWESOME! Fun music, dancers, and so much excitement!

Selfie with Justin, mom and dad

Here are some of the picture highlights. Congratulations to Governor Walz and Lieutenant Governor Flanagan! I loved being a delegate for them in the caucus, organizing unit convention, and at the State DFL Convention. I loved volunteering however I could and writing blogposts in support of them and other political candidates and issues that I believe in.Justin, his parents, Lieutenant Governor Flanagan and Governor Walz

Time for #OneMinnesota where we ALL, including those of us with disabilities, have seats at the table!

 

Justin and man using wheelchair at inaugural celebration

The big toe annoyance

Justin dressed up and smiling

Update on my foot. I wasn’t able to have botox last week because I had a little cold earlier in the week so now it’s rescheduled for the end of January. When I get botox, I get nitrous oxide to help with the pain – can’t have nitrous when you’ve had a recent cold. I do have a dislocated-ish big toe and will need to figure out how to deal with that. First, we have to see if we can calm down the muscle tone with botox and then decide what’s next to fix the toe.

My red Acorn socks rock and look great with buffalo plaid for inaugural celebrations!

 

Hello 2019

In 2019 I want to write more about the challenges in front of me to keep moving towards independent living. It’s not easy to figure all this out and I’ll share what I find out in case it helps others in their own lives or just so everyone has a better idea of what’s involved. And, of course I’ll also be blogging about political issues impacting disability rights, weird random stuff and my experiences with accessibility.

As you know, I took a break from Twitter and Facebook to work on my book, mainly. It has been a couple of weeks since I started my break. I probably wrote about the same amount in my book than if I had been on Twitter and Facebook. So, maybe social media isn’t as distracting for me as I thought. I’m okay with not being sucked into the non-stop drama of our current political reality. But, think instead of a total blackout, I’m going to just limit my time on social media – maybe 15 minutes in the morning and 15 minutes in the afternoon.

Here is what I will be focusing on over the next several months because all of these things need to be in place for me to live independently. I love my parents but like any young adult, I really would love to live in my own place in the next couple of years. So, how do I get from here to there?

My first step is that I need to get my Consumer Directed Community Supports (CDCS) Medicaid/Medical Assistance waiver figured out. This is the funding that helps pay for my support staff, adaptive equipment not covered by insurance, etc. I mentioned this in a previous post, Minnesota Department of Human Services is now requiring me to create my own small business to hire and manage my support staff. My parents and I will be meeting with several different providers over the next several weeks to decide if we’ll stay with our current provider or switch to a new one. Then I’ll need to complete all of the paperwork to become a small business and rehire all of my current staff and have them go through background checks again. The provider I choose will handle the payroll but we also need to figure out how to protect me from liability as a small business (this is more than just worker’s comp and unemployment insurance!). There’s a lot to figure out and it has to be done and in place by March in order to keep having the choice and flexibility for me to hire my own staff. This may all sound confusing. That’s because it is. Thanks very much DHS for making my life more complicated than it already was.

Along with figuring out support services, I’m also trying out new ways to continue growing as a writer. I’m going to try finding a class to take either through someplace like the Loft Literary Center, White Bear Center for the Arts or an edX online class. This could be a fun way to stay connected with other writers and improve as a writer.

And, guess what? It’s almost time for the new legislative session in MN! I’m going to try to get to more of the Disability Days at the Capitol to continue my advocacy for disability rights. Just got my tickets to the Walz-Flanagan Inaugural event at the Orpheum. I’ve heard back about wheelchair accessibility and also have asked if there would be CART captioning.

And, I have a whole lot of doctor and therapy appointments coming up this month – one or two a week. I’m getting botox on my lower leg and foot that’s been so painful on January 9th. Hoping it works.

I’m also going to keep having fun listening to music, watching AFC Wimbledon football (soccer) matches, going to concerts, and hanging out with my family. My younger brother is graduating from high school this spring so life is going to have a lot of changes this year for all of us.

Happy New Year everyone!