533rd

Yesterday marked 532 days that I have been in my motorized wheelchair. I just re-posteded on Facebook the post I wrote and published the day I received it. Since I have had the chair, two different techs have come to my house to tighten it for a total of three times. I have been texting my last tech to come over and tighten my chair because it was getting pretty bad. It felt dilapidated. The arms were sagging and the control panel joystick kept falling over and the headrest needed adjusting. It still worked but was uncomfortable to control. The leg rests were pressing into and hurting my calves.

Because the tech was not answering my texts and probably because my insurance changed, I needed to call Binson’s, the place I got my chair. my Mom did the talking because my speech was not good enough to talk to them myself. Now, get a load of what needed to happen to get my wheelchair serviced: absolutely blew my mind!

The first thing I needed to do was to call my neurologist and get a prescription to get my chair evaluated. That wasn’t a problem but it would take some time, but okay.

Here is where things get a little bit complex.

So, my neurologist will send over the prescription to Binson’s. Binson’s will send over the request for service to both Medicaid and Medicare to see who would cover what because having MS, I am covered by both.

Once it gets decided who is covering what, I need to take my chair to the place to get evaluated. They will not do any repairs but will just see what the problem is and what parts (if any) they need to order and then that’s it.

Then, there is more paperwork on either Medicaid and Medicare’s parts and then parts needed to be ordered if need be.

After all of that is completed, I would take my chair back to the place that it got evaluated and they would be repaired.

The woman told me (Really, my Mom) that the whole process would take about 10 weeks for my chair to be fixed.

WHAT?! That’s just insane! Not to mention that my chair does not travel by itself. I need to rent a vehicle not once, but twice at 100 bucks a pop.

My Mom went to my cousin Cathy’s house last weekend for lunch with a number of my aunts. My cousin is an engineer and she has been working in Dearborn since this summer. My Mom asked her if she could come and tighten my chair one day after work.

Yesterday, my cousin, Cathy, came over with her tools. It was crazy to watch her mind work because she knew exactly what she needed to do and had the arms tightened, my head rest readjusted, and the leg rests fixed so they did not hurt my calves within 30 minutes.

I had not realized how uncomfortable my chair was until Cathy adjusted everything that needed to be adjusted. She told and showed my Mom what needed to be tightened regularly. She told me that if anything else needs to be adjusted that I should just call her and she will come fix it.

I am so beyond grateful and thankful for and to my cousin, Cathy! She said and visited with my Mom and I for a couple hours before she left.

Today is the 533rd day that I have had my motorized chair. It definitely has limited me because I don’t have a vehicle to move my chair but now that it is properly adjusted; it feels brand new!

“You Stink, Justin Matisse!”

I watched half of Hope Floats last night. I really dig that movie! I have watched it so many times and Sean has not watched it with me. He went to the kitchen to warm some food and it was the scene when Justin Matisse comes to the house And he waits on the porch for Birdie to bring out some iced tea. Instead, Berniece comes out and that was when she told Justin the story about the pet gunk they used to have. so, she said it. “You stink, Justin Matisse.”

just after she said this, Sean called from his room that, “It’s weird to hear that.” I have been telling Sean that line forever. Probably because he was born just a year and a half after the movie came out. I don’t think he has ever heard Berniece say it though. It made me laugh! I know that I will continue to say that to him and now that I hope floats is free and demand, I think I may have you watch that a few times.

January 2020 Faves

I saw that a documentary on Linda Ronstadt what is it going to be on yesterday. I have been taken with her. Her music was kind of in my peripheral growing up but I heard that she was diagnosed with something and has lost her voice. It fascinated me because that is exactly like me but my job was never to sing like her job was.


Then, she talked about her Grammy she one with Aaron Neville.

This one wasn’t on the documentary but it is in my childhood:

I found out that she has Parkinson’s; the same kind that her grandmother had and died from.


I also found out that she released a Spanish album so I looked it up on Apple Music and I downloaded it but I haven’t heard it yet. I want to save that because it reminds me of my Dad.

I watched the documentary again today.

1.1.20 Books I’m Reading

I attempted to read this book in June 2019. This would be after my power outage and I had a real hard time getting into it. I think I was just now recovered from the displacement. This year, I’ve decided to try again! I really want to finish the books I start! However, I saw in an ad that if you read 45 minutes a day you will read books fairly quickly and be completed with a book in a week.

my eyes are bothering me today and I was only able to read for 15 minutes so far today. My eyes need rest but I wanted to start of the year reading!

2019 in Review

Last New Year’s Day, I set a reading goal for the year. I was on pace to reach it when I lost power at the end of May and was displaced for six days. That displacement and subsequent scrapes and bruises as I tried to make do with the lack of accommodations in multiple hotel rooms, took me months to recover from. Sadly, I realized that I was not going to reach my goal. I am a little bit concerned because, I seem to be having more, “Bad days” then, “Good days” recently. Here are the books I read:

To end this post on a positive note because I am pretty app domestic for the new year, I did however read both of my October and December goals. I watch,Hocus Pocus 31 times before Halloween and, Love Actually 25 times before Christmas. I am looking forward to 2020 being a good year but we will just have to see.

ALMOST Forgotten Tune #77 + Random Songs in My YouTube Feed #29

I posted the song on Facebook on November 30 and I know I have posted it before either on my blog, on Twitter, or on Facebook. It makes me cry so much because having MS is different from quadriplegia but as time passes, I am finding that maybe it’s not so different. It’s crazy how much you can miss going out to eat like in the video without so much help! I think I may need a minute to compose myself.