My Super Bowl shirt arrived yesterday. I will wear the Rams’ NFC Championship shirt but I had too much of an “MS-y” day to post it. I won’t unveil it until Super Bowl XVI!!! I’m so excited!!!
This is the first Super Bowl of my lifetime that I have been seriously invested in!!! I’m so glad that my man got here! I’m sorry that it wasn’t with us (Detroit) but I’m glad he’s there now and I can’t wait to watch him and then the EPIC halftime show that will be signed as well!!! Yay inclusivity!!!
Yesterday, my Mom washed my legs and changed my socks. We have a routine for this and I remain sitting in my power chair in the hallway as she uses the bathroom sink to use the water to wash my legs.
We listen to music as we do this and we normally switch off between a song I like and a song she likes. But yesterday, I wanted to hear just the songs she likes exclusively.
We started off by listening to the Fleetwood Mac, “Rumors” album. That album is the soundtrack of my Mom cleaning the house when I was growing up. We listened to this entire album and she just had finished washing my right leg and putting a clean compression sock on my right leg.
So, I turned around in my living room and then backed up into the hallway between Sean‘s room and the bathroom so then I would be facing my living room so she could wash my left leg. The other album that my Mom would listen to as she was cleaning the house was Journey. I just searched, “Journey” and the “Journey Essentials” playlist showed up in Apple Music.
I know so many of those songs because my Mom listened to them during my whole childhood! But, it wasn’t until this song came on where as she was soaping up my leg, she let out, unbeknownst to her, “The unmistakable aria” that was the REAL soundtrack of my childhood! I immediately felt my heart warm and a smile form on my face and hearing it and I was taken back to being six years old and laying on the green carpet in my living room probably watching the Disney Channel. My Mom was probably washing dishes or scrubbing the tub.
I want to sleep with clean legs and new compression socks and was most content at remembering being a child and thinking of the sights and sounds of a simpler time. A time before MS definitely!
I texted all of my brothers and it was a long text to describe how I heard my Mom singing last night and I set the stage as to how it was when we were kids. I sent it to them in a group text and all of them have loved my text because they remember that too and hearing this song I’m sure they can hear ‘the unmistakable aria’ in their heads!
So, it has been three weeks to the day sensei lost the To my Chapstick and head to make a, “Bag of Chapstick.” I was waiting for my speech pathologist to join a video call and she actually saw me meticulously put the Chapstick back into the bag so the Chapstick that was hanging out did not get ruined. We had other things to talk about so I did not even address that with her. I think that tonight for the daily text messages that I send to her that have to be spoken I will tell her about it now that the, “Bag of Chapstick” is NOT a thing any longer.
i used this Chapstick until I could only press the Chapstick tube onto my lips because it hurt too badly to have the plastic scrape my lips. I blotted in my lips with cocoa mint and then I went to have my hair washed. By the time my Mom was finished washing my hair and my hair was dry, my lips were also dry so when I got back into my wheelchair, I wheeled over and put my Vanilla Bean Chapstick on EXTREMELY liberally!
I actually wanted to wait until tomorrow to change flavors but my lips couldn’t handle that. I used it all up! I could have my Mom scrape out Chapstick from the plastic; but it’s not that serious! I’m not going to say that I don’t have her do that because I do when we’re talking about deodorant but Chapstick is a little more affordable can you don’t need to use it until the absolute end but I used it until it hurt my lips.
so now, I am rubbing my lips together to keep them moisturized and I will have Vanilla Bean flavor on my lips until the weather breaks. Except for Mondays and Thursdays. On those days, I use my Shortbread Cookie Chapstick and I have been doing that since the beginning of January because I want to use the Shortbread Cookie chapstick up because I don’t think I will get it again for next year. I chose Monday and Wednesday because normally, that is my “cheese Day” but it’s too cold to eat fresh mozzarella cheese in the winter! That’s more of a spring and summer thing which will be a COMPLETELY different Chapstick flavor choice! I do feel completely accomplished by having used this entire tube of Chapstick.
My Mom took Leia for a walk last night and she talked to a couple who lives down the street. I have never talk to them but what she said kind of startled me. I’m not even sure if that’s the word but it befuddled me astounded me I’m not sure. That’s why my blog post title is what it is. What my Mom told me last night reminded me of a story that I was told eight years ago:
Eight years ago, my cousin graduated from high school. I had to text her to find out how old she is to know how old the story was. She is 26 so eight years ago, I was still driving. She was having her graduation party at her house and my Mom and I were going to drive together to go to it. My Mom called my aunt in advance and asked her to leave the driveway open because that’s easiest for me to get to their backyard.
My Mom had told me about my aunt’s nephew telling her about a woman who gets out of her house every morning who is in a wheelchair and puts her wheelchair on top of her car and drives to work. She would say that woman every morning when he was stopped at the stoplight to go to work himself. He told my aunt that this woman could easily get on disability but instead, goes to work every day.
it wasn’t until my car was in my aunts driveway that her nephew saw the car and told my aunt that, “This is the car!“ it was extremely warm and we did not stay at the party very long so I did not get to talk to this man but I thought about the story because the man my Mom spoke to yesterday had noticed me too. My Mom told the man where she lives but then corrected herself and said that her daughter lives there but she is staying with me. My mom told him that we are the house at the end of the street before the Ford building. He asked (for clarification), “Oh, The woman in the wheelchair who goes to work every morning?”
She smiled and agreed. I never once thought about the difficulty I had getting out of my house and getting into my car and driving to work. I was just doing what I had to do to take care of my son and myself. I guess I left an impression on people even though I haven’t worked in coming up on five years now.
I wasn’t going to post about this but when I showed my Mom my progress and she rolled her eyes, I KNEW that I HAD TO!
this is my cocoa mint Chapstick. If you recall, a couple weeks ago I lost the cap but I am a very OCD person and needed to finish the entire tube! Call me Christian Wolff! So when I lost the cap, I told my mom to get a Ziploc and it would keep the Chapstick fresh so then I could finish the tube. I am so close! Almost!:
cue Bobby McFerrin because that’s what it’s about!!!:
After my hair was blow dried, hi got back into my wheelchair and wheeled to my ‘normal’ spot right in front of the TV. My Mom was in the kitchen preparing my dinner and was on the phone so they decided to play my song. I’m talking about Sara Bareilles call my MOM thinks it’s depressing but her song, “She used to be mine” is EXTREMELY cathartic for me! It hurts because it’s true for me; I also am “No longer anything like I used to be.” What does still remember that girl. It’s starting to get a little hazy but I still remember. So, my song played and then my Apple Music just put songs I listen to often and shuffle and then this one came on! I actually had to do a little research and see when this song came out because I clearly saw myself driving myself to Barwis after work. This album had just been released and I was listening to it on my drive when I heard this song and football season was coming up and I thought my Lions would do great things because there was a song now!:
Well, in 2014, the Lions did NOT win the whole shebang but this year, for this Super Bowl, it is quite possible that my man CAN win the whole shebang! My friend texted me this picture which made me laugh but it IS true!:
I opened my eyes late this morning and even before a called my Mom to tell her I was awake, I saw this on Twitter and I watched the video twice in silence before I clicked on the video and heard the sound. It was so relaxing!:
I am so excited for the Super Bowl because this is the first Super Bowl of my adult life where I actually am invested in a team. I am actually wearing my Rams T-shirt today that I wore last Sunday when they got the dub to get into the Super Bowl! I am so excited!!!
I have had my own “Birthday Month” for quite some time now but the term, “Birthday Month” originates before me declaring March as my birthday month! You see, February is my family’s, “Birthday Month” because three of my four brothers were born in February. So, my family’s “Birthday Month” really starts today! It’s the first February birthday today in my family! My brother, Steve has this picture in his pictures on Facebook and I wanted to use it because it’s me and my four brothers. But this is a picture of a picture so there is a glare because this picture is framed at my Mom’s house:
My Dad did NOT take pictures so my brother said he has this picture that does not have the glare. I think it will work because my Mom is in the picture but she bore all of us kids! And I like this picture too because my cousin, Melissa, had a matching dress with me because my aunt Lissa bought them for us.
My oldest brother, Ray, is not part of, ”Birthday Month” but he is connected to it because I was pretty young when my older brothers decided that all of them were birthday presents for my Dad because his birthday is in May and nine months later is February. But then they went so far as to tell me that I was also a birthday present for my Dad because my birthday is March 12. My dad‘s birthday is May 30.
I remember thinking that that was gross but pretty feasible! When I asked them why my oldest brother Ray’s birthday is in September, they just said, “Well, they were newlyweds!” Again, that is also gross but my oldest brother‘s birthday is 9 1/2 years to the day from my birthday so he is connected!
My brother, Dave, called my Mom today. My Mom put her phone on speaker and my brother asked me, “So, what do you think of your boy?! I screamed and immediately knew that he was talking about Matthew Stafford and I told him that I am so excited for the Super Bowl! He then told me that he thinks that he is going to win it all! I loved hearing that and I agreed with him!
I have had undying love for Matthew Stafford since 2009 when he started playing for the Detroit Lions. That’s the same year that Sean started playing for the Dearborn Lions:
I can’t wait to watch all of the documentary style footage of Matthew Stafford and his family and I’m sure Detroit will be in there as well somehow.
I am super excited that the uniforms were announced today and the Bengals are wearing black so that would mean the Rams have to be wearing white and statistically, the team who wears white tends to win! That’s what I am thinking going int(for Sean) o this game! I wonder when my Rams NFC champions shirt will arrive that I will wear for the Super Bowl. But, because I love him so much, but after the trade was made, I’ve bought a Matthew Stafford jersey (for Sean) and a hat and understated T-shirt for myself. I wasn’t sure if I was going to be an allowed Rams fan like I am now! Sean has always said that I am a, “Band wagoner” but I think in this instance, it’s a little bit different.
I am excited because I have never had a vested interest in the Super Bowl. I always would choose my team when the bracket was decided. I would get A shirt that had that team on it but I have a bunch of T-shirts I really don’t wear. I have a Broncos shirt, a raven shirt, and an Eagles shirt that is dead because I wore it so much that they were holes under the arms and around the collar. But now that Matthew Stafford is on the Rams, I can wear any Rams T-shirt whenever I want because in essence, I am a Matthew Stafford fan!!!
It was probably last Wednesday when the events that took place in the middle of the night made me think of book for the first time in about 20 years:
This book had just come out and I was lent a copy of it to read. I was most interested in reading it and waited until Sean was asleep in his crib. This was the first time that I can remember foregoing an entire night of sleep to finish reading a book from cover to cover. I remember seeing the morning sun stream in through the window and I was able to get maybe an hour of sleep before Sean woke up and tended to his needs.
I thought of this book specifically because I clearly remembered a character in it. The details were a little bit fuzzy but I googled: “Albino priest who hurts himself in The da Vinci Code” and then it all came back to me! The character I was talking about was named Silas and he was a priest. He was part of a cultish sect surrounding the Catholic Church. But let me explain the events of last Wednesday night for you to understand why I thought of this character:
It was probably 3 or 4 in the morning and I was awakened from a sound sleep by the feeling of a screwdriver or large needle being driven into my right thigh. Obviously, I screamed and woke my Mom and I asked her to cut my sweatpants off because some thing hurt my leg. Needless to say, my Mom did NOT cut my pants off but we did not find anything on my leg when she took them off. I thought that that was strange because my thigh was hurting so badly even when I woke up in the late morning.
It continued to hurt and it still hurts today, almost one week later. But it no longer feels like a screwdriver or a large needle being shoved into my thigh straight to the bone. Now, it feels like there is a chain around my right thigh, similar to Silas‘s chain. I remember the description when I read the book and it sounded awful and I searched YouTube to see if there was a video representation that showed how it was described in the book.
Oh, there IS one! I will NOT put it on my blog though! I didn’t even watch the whole scene before turning my phone off. It was really gross! But that’s how it feels for me! I feel like there is barbed wire around my right thigh and it is cutting into my skin. At first, I thought it was my compression sock cutting into my skin but there is nothing there! It’s just nerve pain that I will have to deal with! OF COURSE it would be in my “Poop leg!”
I was able to counteract some of the pain with pain medication but I really want to NOT depend on medication to ride this nerve pain out! I posted a meme on Facebook about nerve pain and I talked about it, “NOT being the half of it” because it’s really NOT! It sucks that you can’t see it but I feel like Silas and my “Poop leg” is REALLY hurting!!!
