Author: Jen Rios

ALMOST Forgotten Tune #41

I am not ashamed that I am a bandwagoner! That’s me every post season for football! Last night, Sean and I watched the championship game between Clemson and Alabama. That was some really good football! I told Sean that I would to get a sweatshirt off whatever team wins because I am such a bandwagoner and I need a new sweatshirt.

When halftime started, I surprisingly started to get tired so I started to get ready for bed and was not in the living room to watch Imagine Dragons performing for the halftime show. Hearing that guy’s voice, I could not stop thinking about 12-year-old Sean and me singing. (Back when he was young enough to be OK with seeing a song with his mom) even though they did not perform this song because it’s so old.

I have a memory of being at the movies and parking really far away because there was no disabled spots and singing this song with the radio with him as I got into the car. I also remember hearing this at Barwis which just makes me miss that place even more!

I ended up NOT watching the whole game but after I found out the final score, being true to my bandwagoner-ness, I looked for a Clemson sweatshirt to get. However, the only one I really liked (because it was purple) only had a size 4Xs available so I decided NOT to get one but the Super Bowl IS coming!

REALLY?!… really?…

Last night, in the middle of the night, my phone fell off of my bed and onto the floor. I heard it kind of skid away from the bed. I went back to sleep because it was dark outside. It wasn’t until my knee popped out that I called Sean because it hurt. It was light outside and I felt kind of rested so I didn’t think it was too early. Surprisingly, he answered and came over to my room. I had him get my phone first and found out that it was 8:10 in the morning.

He was able to pop my knee back in and it gave me a loud, “Pop” and then he went back to sleep. Obviously, being awakened with my knee popping out of its socket hurts a whole lot and I didn’t fall back to sleep. I texted my Mom to tell her that I was awake and then I watched YouTube videos until she texted back. She texted me back at 9:17 and told me she was on her way soon. Just after I got that text, I felt my knee slip out again. REALLY?!… really? I can’t believe that my knee is STILL popping out! I wish I knew how to prevent it because then I would but my leg remained bent in that strange position until my Mom came to my house this morning. It didn’t feel good but it did not hurt as badly as it did when it popped out the first time this morning!

When she got here, it took her a little while but she was able to pop my knee back in. Needless to say, my knee ached especially more all day! It’s so frustrating that this STILL happens! The other day, I could not relax enough to fall asleep because I was nervous about my knee popping out. I can’t believe that I have to deal with this now!!!

Laughter

I had a memory of my Dad a few days ago and I so appreciated thinking about it! Parts of the memory were very vivid and caused me to sing the opening bars to the refrain of this song over and over again! It made my Mom kind of roll her eyes every time I started to sing it. This song could not just be sung, I HAD to belt it out!

The memory I had is of my Dad sitting in his chair in my parents’ living room and flipping through the channels with the remote control. I remember my Mom standing by the doorway to the dining room and I must’ve been sitting on the couch against the wall that the kitchen is on the other side.

I do not know what channel he was watching but it was just a clip of Linda Rodstadt singing, “You’re no good” to a men’s prison. She was wearing a long dress and the moment she started to sing the refrain, the men jumped to their feet and roared! The part of this memory that is most vivid in my mind is my Dad laughing!

I remember it being funny that she was singing, “You’re no good” to a crowd full of men in prison but the funniest thing about that memory was hearing my Dad’s laughter! My dad had a really good, hearty laugh but he rarely laughed. I love that memory so much because I can hear my Dad’s laughter! I haven’t heard that in SO long!

I thought I could easily find that video on YouTube but I coyldn’t. The closest thing I found was this one which is in a men’s prison but it’s not the same video because I remember her being on a stage that looked similar to my high school and the inmates were in folding chairs in a large room.


I’ve been missing my Dad a whole lot lately and I wish I could find that video from the late 80s or early 90s! Since I can’t, the memory of his laughter will have to suffice and it makes me smile!

5:27

My knee popped out this morning at 5:27 AM as I laid on my left side. It really sucks to be sound asleep and to be awakened by your knee sliding out of it socket. I texted my Mom 11 minutes later to help by popping it back in. It took a little while for her to get to my house and my knee burned as she tried popping it back in.

My Mom always says that she’s not sure if it’s popping in until she hears, feels, and sees the, “Click” back in. I don’t think I will ever get used to it popping out or even how it feels to get popped back in. My mom got me out of bed at that point because laying flat was getting uncomfortable. It was early and I was tired but as a wheeled into my living room, I thought of Dave, the guy from Binson’s.

The day that I got fitted for my chair in which I cried, He told me that the chair is not designed for people to sleep in; yet, people do. My Mom covered me with three blankets and I leaned my chair back. I was able to sleep for a few hours before I was awakened to the sound of my garbage disposal in the kitchen.

I think it really sucks that my day started so early because of my knee! I didn’t sleep well last night so that didn’t help either but my knee is really throbbing today!

Frozone

I made an appointment for Sean with an ophthalmologist a while ago because his right eye was looking a bit wonky! Today was NOT the day to leave my house but I, “grabbed my guts” and accompanied Sean as his sole responsible party. My Mom drove us to the doctor’s office because I knew Sean would not be able to drive home.

Sean hasn’t really been to the ophthalmologist and he had never gotten his eyes dilated before. I ALWAYS get my eyes dilated whenever I go to the eye doctor because I have optic neuritis in both eyes. We sat in a different waiting room for the doctor to come and get us. Sean was weirded out at how his vision was with his eyes dilated.

I suggested that he just close his eyes because he cannot focus on anything. He leaned forward and had me look at his eyes. I told him that they were not a full, “Black Hole Sun” but his pupils were larger than they normally are. I wasn’t sure that he would get that reference and I asked him if he knew what I was talking about. He did. He looked at me and said, “Soundgarden.” Well, yeah man!

The doctor said that his eyes looked really good but the nurse who dilated his eyes said that it was good that they have a record of the wonkiness in his right eye. When we were finished with the doctor, she handed Sean the roll of sunglasses and told us to wait in the waiting room for a bit for his eyes to calm down before we left.

Sean could not see anything and fumbled with the sunglasses roll in his hand. I grabbed them from him and pulled the sunglasses out of the paper roll and handed them to him. He thought that I broke them and I told him to just stick them to the side of his eyes. He was shocked that I knew what to do but like I said, I ALWAYS get my eyes dilated! He didn’t believe that I knew what I was talking about until he let go of the roll and it stuck to the sides of his face.

My Mom was almost to the doctor’s office when I told him that he needs to ask my Mom if he looks like a movie star because that is what my Dad asked her when he would get his eyes dilated and get the disposable sunglasses to wear out of the office.

Sean did not want to steal my Dad‘s line but he asked my mom anyway and she laughed. Her answer to his question was, “ABSOLUTELY.” Then she told Sean that my Dad just looked like a blind man but he looks like a movie star! I told him that he looked more like Frozone.

He even asked for his super suit just like him!

He tried to NOT wear the glasses when we got in the car but he learned the hard way that NOT wearing sunglasses when your eyes are dilated it is not a good idea! It was a good teachable moment. I told him that my eyes aren’t dilated but that is what it looks like when I don’t wear sunglasses outside. My eyes are so much more sensitive having optic neuritis in both of them.

January 2019 Faves

Well, because today is today… DUH!:

I posted this song a few weeks ago and put it on One of my sleep playlists multiple times to help me fall to sleep:

I heard this song on the trailer for The Upside, a movie that I hope to see!:

Sean and I saw Aquaman on Christmas as is our tradition to go see a movie on Christmas Day. As we left the theater, I heard this song and dug it a lot!

12.28.18 Shift

Today, I am quiet. I’m always quiet on this day. I’m not going to say that it was a day that my world cracked. I’ve been through a crack in my world when my Dad died and this is not that! However, it has been a definite shift on my axis. Everyone knows that with the slightest shift in and on your course will take you so far off of your intended destination 18 years later.

The result of that slight shift has led me to where I am now. Where I ended up is so different from where I thought I would be before the doctor told me that, “I have MS, I’m going to go blind, and then I’m going to die.”

Today is the 18th anniversary of that doctor telling me that I have MS. I have had MS for half of my life! Now, it’s not as if having had MS for half of my life is not hard enough, but my knee injury, subsequent surgery, and prolonged pain has caused that slight shift to become even more pronounced!

It is beyond difficult to endure! The constant pain is almost unbearable and the fact that I resisted having a motorized chair for as long as I did doesn’t matter now because with the pain I am in, I have to have one! Yes, that slight shift on my axis is horrible! Hence, I am quiet.

    Seatbelt

    Today was my due date for having Sean in 2001. He had a different idea though, I had him eight weeks prior to today. I remember my Mom getting worried about the look in my eyes whenever I talked about how much I would eat for Thanksgiving and for Christmas because I was pregnant. He came BEFORE both of those days so that didn’t happen.

    I have recently been thinking about Sean as a baby; More specifically, his second Halloween, when he was about to be two and wanted to be and was a horse for Halloween. My friend Ami made his costume. Because he was so small, we took his wagon so he wouldn’t tire out on our walk. It was the cutest thing! We would come down the walkway from the porch of a house and my Mom was waiting at the end of walkway with the wagon.

    Sean would get into the wagon and meticulously buckle his seatbelt before we would move the wagon to the next house which was when Sean would unbuckle and walk up to the house. He repeated these actions the whole time we trick-or-treated! It was so funny because when he got to each of the doors, if there was a dog, he would ask if he could pet them and other times, he would ask if he could come into their house.

    My Mom and I asked Sean if he remembered it as we laughed about it and he just said, “Safety first!” My Mom likens me to three-year-old Sean and his seatbelt when I immediately need my seatbelt on!

    I need to preface that last sentence with the fact that my motorized chair has a seatbelt. Actually, it is called a, “Pelvis stabilizer” and NOT a “seatbelt!” My first wheelchair tech told me that every wheelchair is equipped with a seatbelt by law . I remember that he took one off of one of my first wheelchairs because it annoyed me! As my disease has progressed and I really can’t control my body very much, I only feel safe once my seatbelt is fastened. Excuse me, rather, my, “pelvis stabilizer.”

    Every morning, when I initially transfer into my motorized chair from my bed, My Mom will tilt the backrest all the way back so then, once gravity plays a role, I can easily slide back into the seat. Once I am securely into the chair properly, I start to move the control joystick to put me back into the sitting position. Before I am in a full sitting position, I tell my Mom to get my belt! She calls me Sean referencing his second Halloween and the wagon!

    She doesn’t get and I didn’t get how important this, “Pelvis Stabilizer” really is! How important it has become for me now! Whenever she calls me this, I smile and say just like Theodore, “ you should have been wearing your seatbelts!”

    ALMOST Forgotten Tune #40

    Yesterday, I showed the One turtle helping in the overturned turtle get turned, right side up again to my Mom. As she watched the video, it automatically changed to a different video and I heard this song:


    I looked it up and this song was released in March 2004. Back then, I was an undergrad, walking on coaches, easily driving, and mother of a three-year-old. DEFINITELY seems like a lifetime ago!

    When she was done watching the turtle video, I watched the following video just to hear that song! I could hear it playing in my car as I drove home from school. I haven’t heard that song in so long!