Author: Jen Rios

Not So Much a Baseball Fan…

We went to get my bed on Opening Day. I saw this picture from five years ago in my Facebook memories and I screenshot it to write about it later but you know how it is for me after I leave my house… as it gets further and further away from Opening Day, that picture is irrelevant but not if I talk about baseball!:

I love that picture! Sean keeps telling me that I have turned my back on the Detroit Lions but I told him that I have stayed true to my heart and have followed my man to the Los Angeles Rams. But seriously, I am not so much a baseball fan. In fact, I haven’t really ever been a baseball fan. I have been to a total of two professional baseball games! The first one was in Tiger Stadium and I was pregnant. The second baseball game I went to was just after Comerica Park opened. And it was so sad to learn in its first season that it is completely NOT handicapped accessible! I’m sure that I have written about this event before but I will talk about it again here.

But first let me tell you about my first time going to a baseball game. which I am sure that I have written about this before somewhere in the archives it’s probably in there but that is where my mind is right now. I was newly pregnant and no one knew that I was. Well, I guess a few people. We go to the game and I was so excited to get a corn dog! It was the first time I was at a baseball game, a professional baseball game and I wanted to savor the ambience! I don’t know who they were playing or even who won but I do know that I wanted to buy a box of cracker jacks! If I personally know you, I know you have heard this story, but I was able to buy MYSELF cracker jacks. I didn’t even finish them.

So that was the first time I want to see the Tigers play. So, fast forward a few years and Comerica Park was just built everyone would think that it was so new construction that it would be handicapped accessible but I found out when I went there on my crutches that it was NOT! The guy I went to the game with had front row, left field tickets. I could’ve caught foul balls IF we could’ve gotten down there! I was on crutches then and there was no way for me to get down to our seats. That really bummed me out but I did not cry because my disease had not progressed that far yet. Thinking about it now, it almost makes me want to cry! We didn’t stay for the end of the game, I think we left in the seventh inning because we sat behind Home plate.

So those are my only two experiences going to watch a baseball game. Thanking about it in retrospect, just like this song, “… I don’t care if we ever come back” but then there is the time that the Detroit Tigers made it into the playoffs when Sean was in middle school. I will never forget that day! We were watching the game and the dryer buzzed and I told Sean to grab the clothes out of the dryer and put them on the couch so I can fold them while we watched the game. He was irritated going to get them and told me to tell him what happens. He left just as a batter stepped into the box. when he came back with an armful of clothes and put them on the couch, he asked me what happened and I looked at him straight faced and said, “Nothing. absolutely nothing!” The pitcher hadn’t even pitched anything! It was a short-lived playoff run but that was years ago.

But now, with me and my disease progression, I will NOT attend a live baseball game ever again. But that really doesn’t matter because i’m not such a baseball fan anyway…

“Floating Side-by-Side”

I just want to start this blog post off by saying EMPHATICALLY that I can do ANYTHING for three days!!! This is not me saying anything about dealing with having had MS for 21+ years but I think the fact that I can do that, or, I have done that, makes dealing with sleeping in my power chair for three more days before my bed comes a little bit more tolerable.

I was thinking for a long time about how to write this blog post about my sleeping situation last night and I kept thinking that I was going to name it, “A teeter-totter” because that is this song popped into my head and this is exactly what I did last night!:

Let me ‘Splain ya: I originally got my power chair because my knee was injured while I was seated in my manual chair. My meniscus was torn. Because it takes so long for the body to heal after surgery (I had a second knee surgery on the SAME knee) when you have MS, my wheelchair tech suggested that I get a power chair so I can keep my legs elevated and extended at all times. When my knees are bent at 90°, it hurts! I can adjust my wheelchair to have my legs elevated all day long and that helps. But now, let’s think about a body that has had MS for 21+ years…

I can no longer sleep in my bed. It hurts too badly when my Mom, “Yanks me” out of bed. That’s how she explained it to KJ at the furniture store. My NEW bed is arriving on Friday. So last night, I was a teeter totter because I would lay back until my ankles start to hurt and then I would adjust my chair to the sitting position until my knee started hurting. Then I would adjust it back. I think I did that five or six times before I found a spot where it was like Carrie says, “Floating side-by-side.”

I love that song! It reminds me of our second apartment! I was more able-bodied back then and could still drive. I have listened to this song twice as I was gathering the images to post here on my blog. These are the words that made me think of this song and I always love a reason to post songs that I dig!:



Maybe I should listen to this album tonight when I am puzzlin’…

Over the Edge

I have been sleeping in my wheelchair since March 21. My bed is not coming until Friday so I will keep sleeping in it for another four days. I can handle anything for four days! At least that is what I tell myself because in addition to my ankles hurting because I have been sleeping in my wheelchair, today is the first day I have felt the weather change in my body.

This happens every year and each year it gets progressively worse but today add to that my ankles that hurt super, super badly and that puts me over the edge! It’s just a little too much angst in my body right now! Because I am sleeping in my wheelchair, my feet would be elevated over my head and my feet started to hurt a whole lot so I slept for the past two days with my shoes on. my mom would rest my feet on a pillow on the pedals of my wheelchair but because I’ve been sleeping with my shoes on, I don’t put the pillow there. I think that we will have to rethink our strategy! Put my shoes on top of the pillow?! I don’t know!

it does not help that my body is screaming right now and my ankles hurt so much!

To Answer Bob’s Question: Yes, it is!

I had written on Saturday that my Mom and I went to get an adjustable bed for me but I was too tired to write about it. I think I will try to do that today. We went to Ashley HomeStore:

As you can see, we rented an accessible van for me to go there in my power chair. The man who helped us was named KJ. He explained all of the Features of the bed and my Mom got on first as he was explaining it to us.

Then, it was my turn to get on the bed. It wasn’t until the end of our visit there that my Mom asked KJ what he thought about us moving around because she noticed that he was watching us. He told us that he was humbled and that he would never complain about anything ever because he watched us work together and he saw my Mom‘s strength and commented on that.

it was about halfway through our visit where I had to take my glasses off and put my sunglasses on because the fluorescent lights in the show room or too bright for me. I had to wear my sunglasses in Best Buy as well so I guess I need to get prescription sunglasses because it’s difficult to not have my glasses with the prism on the lens Because now it is at a point where my right eyeball pulls outward trying to focus. Needless to say, it does not feel good!!!

I was seated in my power chair as KJ wrote up everything. I took that time in my chair and thought about my Dad agreeing with my Mom saying that it was going to be expensive and then they needed to help me.

When it was all said and done and we were exiting the store, I was grateful that I was wearing my sunglasses because I was thinking about my Dad and I completely know the answer to Bob Marley‘s question about it being love because I completely know that yes, it is and I have a single bed now. I didn’t wipe away my tears because I didn’t want anyone knowing that I was crying but they were tears of gratitude for my parents. They love me!

ANOTHER “Bag of Chapstick” OR An Executive Decision

So this happened a few days ago:

Yep, ANOTHER bag of chapstick! Even though I am sitting in my house wearing a winter hat, I have made the executive decision that once this chapstick is finished, I will change to Pomegranate chapstick. I was going to wait until I got my haircut for this month but I got really uncomfortably warm for a while so I took my hat off. But then I got cold again so now I have my hat on but I think it’s totally acceptable to change chapsticks. Even overdue because it’s NOT winter time anymore!

An Explanation

Yesterday, I was absent mindedly scrolling through Facebook and I came across this post and I loved it and shared it. This is the post that I shared:

I was certainly surprised to see a picture of myself on Facebook. I need to explain this picture after over 100 people have reacted to my repost of the original post. I gave an interview to Momentum in September 2016, I think.

A woman called me and interviewed me and we talked about my diagnosis and I was still teaching at the time. I was also working out at Barwis Methods then and that is where this picture was taken. Sean and my Mom were with me for that photo shoot. After the shoot, a woman told me that these images will be owned by the NMSS (The National Multiple Sclerosis Society) for use in the future. Well, this is the future I guess!

“Sunshine”

So, yesterday my Mom and I went to look at an adjustable bed for me:

I’m still recovering from going out yesterday but after I laid on the bed and we discussed payment and delivery, I heard this song as the guy walked to write up the paperwork:

Man, I am OLD I hope this bed will feel like a pocket full of sunshine!

#MyGirlL: The Little Mermaid

I woke up really late this morning, it was really afternoon, and I’m going to spend the day recovering and trying to figure out what kind of blog post to write about my new bed that we got yesterday but my Mom took this picture of Leia today just minutes after she finished uncovering me.

I sent this picture to Sean and I told him that she is Ariel. But then I had to explain the reference to The Little Mermaid to him because that’s MY movie but NOT his! But I told him that she wanted to be ‘where the people are.’

My Parents Love Me

So, tomorrow I have an appointment to look at and possibly, (most likely), order an adjustable bed for me. It will be a twin sized bed. It will just be my Mom and me going to look at it. Sean’s friend won tickets for opening day and he has been friends with Sean since they were four years old and in preschool. When is he ever going to sit in the third row without paying for it?! It’s just my Mom and me who do almost all of my transfers anyway.

I gave my Mom a warning that I may cry tomorrow. My Mom responded with telling me to keep all negativity away but I told her just as my voice started to crack and with tears in my eyes, “My Parents love me.”

I had a virtual appointment with my Speech Pathologist yesterday and I talked about going to look at the bed tomorrow. I told her that I have not bought a bed since, and it took me a moment to think about it, since 2006?!

My bed is STILL super comfortable and the only reason I am getting a new bed is because my disease dictates it. My Mom read my blog post about my Dad agreeing that they needed to help me and she says that I misquoted her. She told my dad, “This is going to be expensive, Ray.” To which my Dad answered, “Yeah.” And then my Mom continued, “We have to help her.”

My Mom has told me that this bed is a gift. I told her after a few days of letting that sink in that the only reason that I am accepting it is because I can hear my Dad say, “Yeah.”

In attempt to keep my tears at bay tomorrow, I will be singing this song in my head:

My New Emoji

I was randomly scrolling through Facebook and I saw this post and I reposted it because I never thought about it:


My Facebook friends did not disappoint and they started posting s ‘Hi’ to me. And the same day I posted that on Facebook I saw this tweet on Twitter:

Just

I didn’t have an embarrassing nickname from my parents but from my brother! He has been calling me those for the past 27 years but no one ever noticed before social media! Now everyone knows!:

I received a ‘hi’ from my Facebook friend and this was the first time I used this emoji that showed up in my phone because Big Brother knows that I am in a wheelchair! I wish it was a power chair!:

It’s something to look forward to I guess, my new emoji and a power chair. Do you hear that Big Brother?!