Author: Jen Rios

“It hurts!”

Kyle Brant made a reference to West side story a couple weeks ago and I meant to tweet at him because when I was young, West Side Story was a HUGE part of my childhood! But I didn’t get around to it.

Last week, Kay Adams referenced West Side Story yet again when she was speaking about preseason games going to be on that night. She sang a portion of this song:

OF COURSE, I had to tweet her regarding this!

I ABSOLUTELY love getting a reply from anyone at the breakfast table!

So, West Side Story has been on my mind for a while now. I really think I need to see if it’s free for me to watch on my TV. I would really dig and welcome that nostalgia!

Yesterday morning, after our morning routine was just about done, my Mom placed my right leg injury her lap to put my tens unit patches on my knee and my knee popped back into place. I knew it was hurting me, like a pinching hurt, but I didn’t know why until it popped back into place. With that pop, I had to take a pain pill because my knee hurt a whole lot! Then, it started to rain.

So today, she didn’t put my leg up on her lap but my knee still popped out. So more pain pills today because it really hurt! Because West Side Story has been on my mind, I thought of this scene in the movie:

JUST DOUBLE CLICK THE PICTURE!

All of this knee popping out business almost 3 years after my injury is insane! It really does hurt a whole lot! MS REALLY DOES STINK, ESPECIALLY with my knee injury and the rain!

Heresy

We drove to Sean’s pictures in my car. We got home in the early evening. When we got home, Sean went into the house to bring my motorized wheelchair out to the car. I have figured out that it’s easier to be transferred directly into that chair and ride it into my house.

As he was bringing my chair down the ramp to the porch, this song came on the radio:

He opened the car door just before the refrain started. He lifted me from the car into my wheelchair And once I was seated in my chair he began to tilt it backward so I could slide in comfortably. Once I was in, I used the controls to sit back upright, I was shocked that he knew all of the words! He told me that, “[He] know[s] and that [he] is not even a U2 fan!”

I couldn’t believe the heresy that was coming out of his mouth! What?! NOT a U2 fan?! That is insane! I got situated in my chair with the seatbelt fastened end even though I was in shock, I asked him how he knew the words. He is looked at me and said, “You.”

As I drove myself across the sidewalk and up the walk way, he told me that this song remind him of our apartment (The second one) and the squiggly lines on the computer that would come on when the computer went to sleep and I was listening to music. I asked him what I was doing and he kind of shrugged and said that he didn’t know but maybe doing the dishes, cleaning, or doing homework. He asked if I was still in college when we are at our apartment. I told him that I was.

I only have a vague memory of doing the dishes or cleaning or even doing homework while listening to music but I like hearing that Sean has a memory of me doing those things and of this song. Even though he is a heretic in saying that he is NOT a U2 fan! They are my ultimate, favorite band and I cannot imagine anyone NOT being a fan!

I appreciated him knowing the words even if he is NOT a fan. I liked hearing that he knows these words because of me! I should have told him that he was welcome for me letting him learn the words but I was so shocked at the heresy he committed and saying that he is NOT a U2 fan!

I’m Old OR Blown Away

Sean had his senior pictures today. I actually really liked being there for the pictures. The woman who checked us in took in my card for the payment and explained how the pictures were going to work to me.

She explained that I am not going to receive a portfolio with the proofs (like I did when I was a senior) but that I would receive them in the mail and also via email. After she was finished explaining all of the changes to me, I looked at her and said, “ I’m old!” I think all of these changes are crazy!

Sean changed into his casual clothes and we all went back to the studios to take his pictures. I thought it was pretty cool to witness these pictures being taken and then he changed outfits. (my Mom came with us to be my voice because my speech is still weird) He changed into his suit and tie for the yearbook pictures. He looked good! Maybe that’s just because I am his mom that I say that but he really did! The photographer commented on how well he ties a tie. She asked if he wore a tie to school because it looked really good and he tied it very fast.

Then it was time for the cap and gown. I did not realize that I wasn’t ready for this but I wasn’t at all because when she gave him the gown to put on and put the cap on his head, I was completely blown away! He looked so grown up! My heart stopped in my chest and I silently lost my breath and was astounded by how far he has come in his education! He’s almost done! WE ARE almost done!

I can’t wait for the proofs to come in the mail and I scoured the information they gave me regarding purchasing pictures. I like that Sean understands that I am going to make all of the decisions regarding the pictures I will get and maybe it’s because he’s the boy that he doesn’t really care and he will gladly let me do it.

Ice Cream Makes EVERYTHING Better!!!

So yeah, it’s one of those kind of days! After our morning routine (and some tears being shed on my part), my Mom asked me if there was anything she could do to make me feel better. My answer was simple and a no brainer for me:

ICE CREAM!!!

She went to the Baskin-Robbins drive-through not too far away but they didn’t have mint chocolate chip ice cream. The horror!!! Mint chocolate chip is my absolute FAVORITE!!!

Because I was having a really tough day, my Mom (The gem that she is) went to Kroger to get some. She FaceTimed me and I told her to get the cheap one. It was $1.

She thought to get me a bigger one but I told her that I don’t eat ice cream that often. I also told her to get a small one so I could eat the whole thing! Well, I barely made a dent and put the rest in the freezer but ice cream really DOES make everything better! At least for right now anyway…

My Two Oldest Brothers

I’ve been seeing various Fidelity commercials and they are set to an 80s song.

I was alive when this song came out but I was only four years old. Whenever I heard this song as I saw the Fidelity commercial, I thought of my two oldest brothers. My oldest is 9 1/2 years older than me and my second oldest brother is seven years older than me.

I obviously am reminded of the movie, Pretty in Pink, but I think of them because they were older than me when this song and movie came out. I have seen different versions of this commercial four or five times today and I think of them with fondness!

Wave

Well, today is the day four of my, “Sleep all day and don’t feel rested anyway.” It’s super frustrating and I can’t get rid of it, no matter how much I try to, “Grab my guts.“. I just succumb to it. It’s kind of not cool when I miss a TV show that I wanted to watch but I think I will just blame the weather!

Yesterday, my Mom witnessed this change on my face mid-conversation. She noticed it as I was talking with her while we completed our morning routine. Today, I felt it more than she saw it because she wasn’t looking at me when it happened. When she is, she tells me that she sees a wave of tiredness pass over my face. I feel it in my eyes and it feels like my entire face is drooping.

It completely stinks that most of the afternoon and evening is gone AGAIN because I have, “Passed put” and end up NOT feeling rested. All this sleeping does NOT feel good at all and it is beginning to concern me. I’ve been tired having had MS for 18 years but NOT like this.

My Queue

Today is the third day in which I have slept a large part of the afternoon and then into the evening. I just opened my eyes and I am super groggy. I think it’s terrible that even after a long sleep, I NEVER feel rested.

I have felt this way since getting back from my days at hotels when my power was out. It’s frustrating to me that I can’t just, “Bounce Back.”

What seems to happen is that I fall asleep with the TV on and maybe 45 minutes or an hour later I turn it off and fall back asleep for another hour or two. I wake up and look at, “My queue.”

Those are the books that I still need to finish. I have already started a few of them but I can’t seem to gather the strength to concentrate and read. My eyes are wonky anyway. The last time I read it was July 20th before my power went out. I hope to restart and complete reading them again soon!

Maybe I should just remove them from the corner of the desk under my TV but I choose to think this stack will encourage me to begin reading sooner than later. I just turned Pride and Prejudice on again but I fear that I may fall asleep again. I can’t get over how tired I am! MS really stinks! Oh, and my knee still pops out which hurts a whole lot!

10 Movies

I have figured out a couple of things with me feeling so awful today. I have been feeling, “Off” since I got back into my house after my power outage and after the quest to find a properly handicapped accessible hotel room. To my dismay, I never found that room. I got back into my house on July 25th.

Upon my arrival home, I had scrapes on both elbows and bruises on my backside. All of them hurt for a while but that pain has since subsided. I am not back to 100% though. I actually am far from it!

I started thinking that this was going to be a long process when I fell asleep during my two favorite parts of the movie I was watching. It was Labyrinth.

I currently am watching Pride and Prejudice with Keira Knightley. I finally figured out why I watch the same movies over and over again. Because I am not feeling 100%, I fall asleep often when watching it. And when I say, “Fall asleep,” I mean that I, “Pass out” seated in my reclined motorized chair.

Yesterday, the movie played three times in my house. I probably watched it all the way through one time once I pieced all the pieces I saw together in between my, “Passing out.”

I’ve since gotten my Mom interested in the movie with me when she comes by but the other day just as Sean was going to work and I started the movie, Sean let me know then that I watch the same movies over and over! He told me that in his lifetime, I have probably watched the same 10 movies.

I laughed as he left for work but it got me thinking. I DO watch the same movies over and over again but I think that’s mostly because I, “Pass out” so much mid-movie.

If I am watching a movie that I know what’s going to happen, I don’t feel so bad falling asleep during it. My Mom came by to drop off my tacos for Taco Tuesday and she looked at me and told me that I look like I don’t feel well. Well, I don’t! STILL!

I’m not sure if it’s the weather or the fact that I am really having a hard time, “Bouncing back” these days. I really hate not feeling well but I think I will turn Pride and Prejudice back on again today because I LOVE Mr. Darcy and may need to sleep AGAIN!

Pride and Prejudice was playing when Sean got home from work the other day and it may be playing when he gets home from work today too. I guess it’s one of the 10 movies I have seen over and over again in his lifetime. But, I’m OK with that though.

Leveled Up OR “Movin’ On Up”

My therapy party arrive to my house on August 2. It arrived after I posed a question to one of my MS support groups regarding my loss of hand strength. My loss of hand strength became evident when my toothbrush was wearing out a lot faster than it should or ever has. It made me nervous because I wondered how much damage I was doing to my gums with my heavy hands.

I ordered it at the suggestion of my new friend and fellow warrior, Ashley. She told me to squeeze the putty and move it from hand to hand while I watch TV. I immediately began using the teal, extra, extra soft putty. She told me that when it gets easy, I should move up to the next level of firmness. There are six levels of firmness in this package:

I started with the teal, extra, extra soft and I was surprised that it was difficult for me! It kind of discouraged me but I kept at it:

Well, after 10 days of work, I have leveled up! I warmed up with the teal putty this morning and moved to the neon orange which is just extra soft:

So, I have been working with the orange, “Fuddy putty” (As Sean used to call it) all day so far. To say that I haven’t been singing this song all day during the commercials would be a lie. I live on the west side of my city and I live in a house but the sentiments are the same. I am moving on up with my hand strength and abilities. I have noticed that I can control my toothbrush more so now so I am excited for my gums!

The 10th

This morning, it was extremely evident to me that it will take me a very long time to fully recover from my power outage at the end of July. I am sleeping a lot during the day even when I do not want to! For instance, I was set to watch the Lions preseason game against the Patriots last Thursday.

I was excited when I watched the coin toss at the beginning and Stafford was one of the Lions players to witness that. Once the game started, Tom Savage was under Center so Matthew Stafford wasn’t going to play in the game. That bummed me out a little bit but there were a lot of other players that I wanted to see. I even had my eye patch on because my eyes are a little bit wonky right now.

I woke up just before halftime and I didn’t even know that I had fallen asleep! I then fell back to sleep and woke up well after the game was over. I haven’t been well since I got back into my house after the power outage.

This morning, for instance, I was really dragging! I sat in my kitchen and it took an exceedingly long time to drink my Kiefer. Sean woke up kind of early because he was called in to work early. My Mom had brought him pancakes that she had made at her house so he joined me in the kitchen to warm them up to have breakfast.

When he was finished, he was putting the gallon of milk back into the refrigerator and I asked him to get me my Adkins shake. He pulled one out of the door of the refrigerator and asked me if I wanted him to open it. I have had to have either my Mom or him open it because my hand strength has gotten so bad that I can’t even open it myself.

I told him that I could do it so he set it on the counter and went into the living room to lounge on the couch. I told him that I didn’t want to brag or anything but I have been, “Playing with my ‘Fuddy Putty’ for nine days so far!”

*** As an aside, when I said, “Nine days,” I immediately thought of my first days at Western and driving with two of my new friends and girls on my floor (Tonya and Marissa) to go to the local Target store. We were strangers until this day and Marissa started singing this song at the top of her lungs when it came on the radio and yelled for us to sing along as well because, “[We] knew the words!“***

Sean kind of laughed when I asserted that I could open my shake of my own. Once I did, I let him know that today would be the 10th!