Month: February 2019

A new wheelchair tech came to my house to work on my wheelchair this morning. He arrived at my house just after Peter Schrager showed the highlight reel of his #2 in his top 10 recruits going to the NFL Combine. It was Rashan Gary! He is a D tackle from Michigan! I’ve watched him a lot this season! I had to turn the TV off once he got into my house.

So far, in the life of my disease, I have a had four wheelchair techs. Tyler only worked on my manual chair years ago, Christine was at the appointment I had at RIM with Diana to get me fitted for my custom manual chair. Dave was at RIM when my Mom and I went to try out my motorized chair for the first time. He brought it to my house a few days later. I have liked ALL of my wheelchair techs but for some reason, I REALLY liked Brad, whom I met today.

He came in with his bag of tools and completed all of the adjustments I needed. The top of my joystick on my control panel fell off, my head rest needed to be adjusted, and we talked about my feet falling off of my foot pedals and ways to prevent that. As he adjusted the guards on either side of my thighs to make it easier for my cupholder to stay affixed, he sat on my couch as he adjusted the guards and asked how long I was in a manual chair.

Now that I have a motorized chair, I can’t believe that I was in a manual chair for as long as I was! I didn’t get fitted for a custom manual chair till about two years ago. Before that, I used to just order generic orthopedic wheelchairs online. I did that for about 11 years. We talked about my resistance to getting a motorized chair and wanting to keep my upper body strength by propelling myself in the manual chair. My Mom brought my manual chair out for him to see.

He completely understood when I told him that I thought I was going to beat MS! I thought I was going to be that one success story! It took Christine coming to my house to make adjustments on my manual wheelchair’s brakes for her to see the amount of energy I was exerting just by moving around my house. Christine was the person who convinced me to get the proper paperwork from my doctor to get a motorized chair.

When I told him that I thought I was going to beat MS, I was a bit embarrassed by my ignorance and my foolishness. He listened to me thoughtfully and told me that that was a good mindset to have! I really appreciated them saying that to me!

He also told me that I had a really good manual chair in addition to my motorized chair and asked what kind of exercise I did in my chair. I told him about going to Barwis Methods and I told him about my knee injury and surgery. My knee is STILL not the same! Hence, it was good that I got the motorized chair! On the rare occasion that I leave my house, I use my manual chair because I do not have a vehicle to accommodate my motorized chair.

When he was finished making all of the minor adjustments and we talked about my foot pedals, he wrote a bunch of stuff down which is when I realized that he was left-handed! I commented and he smiled and looked at my motorized chair and told me that I was too! (the control panel for my chair is on the left side).

Before he left, my Mom told him that, “Brad” was a good name and she has only known good men with the name, “Brad.” I told him that I wanted to name my son, “Brad.” Because I too have also only known good men who are named, ”Brad.” Mr. Flint, my high school religion teacher, was named, “Brad” and my cousinT Shannon had a close friend named, “Brad” as well. Two of my physical therapists were named, “Brad!”

Brad told me that he comes to Dearborn schools all of the time to make adjustments for students. He gave me his card and told me to call him if I ever need any further adjustments.

I currently am reading a book about RBG. I am absolutely LOVING it! I am more than halfway done but not quite 3/4 of the way finished. I posted a picture on Facebook of the quote that I read on page 127.

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I liked that quote because today I’m not feeling very well. I hope that I feel better tomorrow. One thing I have noticed since I began reading this book is that my vision starts having a problem about a half hour into reading.

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It took me a minute to try to explain what I was saying to my Mom. After a while, I see green that leopard print directly over the text. I don’t see the dark green but rather, if you make the dark green spots the light green background color, that’s closer to what I see. I’ve had Optic Neuritis in both of my eyes for a little over 10 years. My right eye started to show signs of Optic Neuritis when I was pregnant with Sean.

The doctor told me 18 years ago that I was, “Going to go blind and then I was going to die” after she told me that I had MS. Even though I situate myself to be directly under my dining room light, I believe that my daily reading is putting strain on my eyes. I am so engrossed in the book I am reading that I try to push through and keep reading even though the leopard spots get darker and darker.

I just finished reading and as I write this post, my phone also is getting the dark spots. Perhaps I just need to rest my eyes and will do that by putting a movie on that I’ve seen 1 million times so I can just listen to it and maybe doze off a little bit before bed. I really do hope that, “Tomorrow will be better.”

I’m not sure if it is this bitter cold weather or the fact that I don’t sleep well through the night but I spend most days dozing off in my wheelchair. This happens multiple times during the day and they end up just being cat naps. Yesterday, I was dozing off and what needs to happen for me to doze off is I need to pull my arms into the sleeves of my hoodie after I put my hood on my head. I fold my arms across my ches and put my head down so my mouth is inside the nevk of my sweatshirt.

Doing all of these things helps because I can no longer regulate my body temperature, be hot or cold. Yesterday, I had just started to doze off when I heard the beginning bars of The Little Mermaid song! It was, “Part of Your World” and I opened my eyes quickly to found out that it is being remastered shortly.

I saw that same commercial today as well. This morning, when my Mom got here, I told her about it and proceeded to sing, “Part of Your World” in its entirety while sitting in my kitchen as she made breakfast. I still know all of the words! I tried belting it out like I used to when it first came out (when I was eight years old) but, that proved to be really difficult! It was really good that my Mom did not judge me on my performance.

As my Mom and I started to get things together to get me ready for the day, I looked it up on my phone and played this song as a sing-along again! I couldn’t find this song on Apple Music so I just searched it on YouTube. We were involved as soon as it finished playing so another song started, I ended up singing with Aladdin, The Lion King, Sebastian from The Little Mermaid, and Beauty and the Beast.

I was just about finished with my performance of all of these Disney movies that came out when I was a kid But then Pocahontis came on! Really?! That was my grand finale! The whole time I did this, my Mom just smiled and laughed that I still knew all of the words. Talk about exciting music!

I was a middle school Reading Specialist for seven years. Part of my responsibilities was teaching a four classes that utilized the reading program, READ 180. It is a very scripted curriculum to help lower performing students with their reading and writing skills.

During the school year, students enrolled in that class, had to take four separate assessments that tracked their progress. Those assessments were administered on a computer. It was my responsibility to manually input the enrolled students into this computer program.

I needed to put in their first and last names, specific class information that they were in rolled in, and their date of birth. After doing those things, the students were enrolled in the class in the computer program and would be permitted to take the four, necessary assessments on the computer.

Once I received my class lists before students arrive for the school year, I would manually enter in their names and the specific class information. To obtain their birthday, I would give them a reading assignment with comprehension questions to complete while I inputted their birthday. I would call their name and ask their birthday as I would enter the information in and complete their individual enrollment.

Because of a job description change, this specific reading program was disbanded a year and a half prior to me leaving work. Therefore, the final year of me having to input this information into my computer was a total of four years ago. My son is 17 years old. He was born in November of 2001.

The last time I inputted students information into the computer was for a group of seventh graders. My son was in eighth grade at the time. After I was completed with entering in the entire class, To make sure I had the correct birthday, I would double check before I closed out of the program that all the information was correct. I would then begin working with the students regarding the reading assignment and their answers to the comprehension questions they were given.

The final time I double checked the birthdays, each one of those seventh graders were born in 2002. Just after I finish doublechecking their birthdays, I told them all, “ I could be all of your moms!” We all laughed and I told them that this was the first year that I could say that. I remember that being a strange moment for me because I had been teaching since my son was three.

I also laughed because I had been called, “Mom” by so many students over the years! I was called, “Mom” for the first time when I taught English and my son was three years old. It was a girl student who called me that and she was beyond embarrassed at doing so. I just smiled at her and told her that I’ve ALWAYS wanted a daughter but I didn’t want to have her when I was 12 years old! My response to her got us both laughing and her embarrassment diminished.

Well, it’s been a week. I hope that my Super Bowl hangover is over now. One thing I have not commented on thus far since the Super Bowl is the halftime show! I have seen and heard a lot of negative things about it and I am just going to leave my two cents here.

Granted, the Maroon 5 halftime show was not anywhere near the Prince halftime show by any means or even the Bruno Mars halftime show but the part of me that stores the memories from my mid 20s was very appreciative!

Sean was not feeling well so he stayed home with me to watch the game. That was the first time in a few years that he watched the game with me. The first half of the game was not great because I wanted the Rams to win.

I had written a post a while back and re-posted it on Facebook about the songs I wanted Maroon 5 to sing. I think I was 24 the first time I saw Maroon 5 at the Palace in Auburn Hills. Sara Bareilles opened for them and it was just her and her piano on stage. I remembered really liking her but I was excited to see Maroon 5.

I saw Maroon 5 two more times at DTE Energy music theater with my cousinT, Shannon. They co-headlined with Train. Gavin Degraw joined the bill for the first show and the second show we saw, included The Script.

The first time I saw Maroon 5 when I was 24, Adam Levine really showcased his musical talent! He not only shredded it on the guitar but he showcased how well he played the drums. I was really impressed!

The second and third shows I saw, I was more in to Train and Maroon 5’s sound was changing. I wasn’t sure what songs they were going to sing so I posted five songs I really wanted them to play. They didn’t play any of the songs I wanted BUT…

To start the show off with, “Harder to Breathe” made me gasp and get excited! To say that I did not throw my hands up in the air and scream as if I were in my mid 20s would be a lie. Because I did! Toward the end of the show, the fact that they included, “She Will Be Loved” made me scream and throw my hands in the air again.

I guess it did not have the, “Wow” factor that Beyoncé, Katy Perry, or even Lady Gaga but the fact that it touched my feelings from when I was younger and more able-bodied meant a lot to me! I appreciated it!

The show will not live in my memory as great halftime shows like Prince or Bruno Mars but my Maroon 5 playlist on my phone have been playing a lot more now!

So, I posted it on Facebook yesterday that my Mom and I watched this movie:

I have FINALLY accepted that I need a caregiver. This movie was about caregiving. Watching it with my Mom was a little bit difficult because she had a hard time with all of the foul language! But, we still laughed a ton!

This morning, I told Sean about it and suggested that he watch it. So, as my Mom was helping me get ready, he watched the movie. As I got ready, I heard Sean laughing. It reminded me of a time I needed to go to the eye doctor because I have Optic Neuritis.

I think he had to be about seven. He went with me to the eye doctor (it was a small clinic) and I needed to go into another room for a visual field test. I told him before I went into the room that I would be just on the other side of the door which was adjacent to the waiting room. While taking the test, the lights need to be off so the room is completely dark. I told him if he had any problems to just come open the door.

As I pushed the button when I saw a light in the machine, I heard Sean laughing hysterically! When I came out after the test, I asked him what he was laughing about. He was laughing at Ellen that was on the TV. That was the day I decided that I loved Ellen because she made my son laugh so much and to hear a seven-year-old’s laughter was really nice as I took the visual field test with which the results weren’t really great.

Now, Sean’s laughter does not sound the same as it did when he was 10 years younger but I still appreciated hearing it this morning! I was completely ready for the day About halfway through the movie. We finished it together. My Mom is the primary caregiver but Sean helps with transferring me because it’s easier for him because he’s taller than my Mom and a bit stronger.

Sean liked the movie as well. I let him know, as a disabled person who needs a caregiver and having seen movies about disabled people, there is a certain dark humor involved. You have to find a way to laugh at your situation which by all counts is NOT good at all and is EXTREMELY difficult at times.

We have that dark humor. I have so many examples of how it’s alarming to other people but we laugh all the time! Sean and my Mom get that and I was so glad to see this movie with BOTH of my care-ers!

Yesterday, the GMFB hosts had a segment where they proposed a, “Super Bowl hangover.” That is EXACTLY what I’m feeling! I think it didn’t help that my Super Bowl shirt arrived yesterday. It was a Rams shirt! It actually was a royal blue T-shirt with yellow letters. It was a Todd Gurley Ii #30 shirt. I’ve said before that I still rock my Eagles Super Bowl Championship shirt but I can’t get behind the Gurley shirt. I don’t want to be reminded of that Super Bowl.

Yesterday, Kay talked about the NFL 100 Super Bowl commercial as being something that could be a, “pick me up” for her. That was my favorite commercial during the Super Bowl! I really liked seeing Barry Sanders in it!

Today, they still talked to a lot about the commercial and they had the interview of the girl in the red dress at the end of the commercial. I didn’t know who she was until I saw GMFB this morning. They still talked about the Patriots being the Super Bowl Champs and they talked about the Saints which kind of broke my heart a little bit. Mike and I wanted them to go all the way! (He was one of the EMTs who took me to the emergency room downtown from the emergency room in Dearborn).

I haven’t even talked about the halftime show yet! I’ve seen some of the reviews of it though and they weren’t so good but I believe I have a differing opinion. I think because I am older now, hangovers last a lot longer!

As I get my thoughts together and in the meantime, I will enjoy off-season GMFB which Peter Shager said was the best yesterday and I COMPLETELY agree with him! I also am returning my shirt. What a bummer! I have wanted a Todd Gurley Ii shirt ever since the team was in St. Louis for his awesome rookie year! I REALLY love that Jolly Rancher’s commercial!