Author: Jen Rios

My Tear-Stained Face

Well, yesterday was day one of my 23rd year of having MS. It was a difficult one to say the least! I feel that I have started to project how my body feels on my face. I was thinking yesterday that everything just hurts so badly that I just look like I’m in pain all of the time!

After 23 years, I just can’t hide it anymore. Last night as my Mom and I were doing our routine before I got into bed, and tears just seeped out of my eyes as we worked. I no longer think of them as,”Strong, silent tears.” I actually think that they are kind of pitiful now, but we continued working just the same.

Once we were finished and my compression socks and Tens unit were off, I used my sleeves to wipe my tear-stained face as my Mom handed me a tissue to blow my nose. I apologized to her for crying and she just said matter-of-factly, “It’s my job.” After I blew my nose, I told her, “Mine too.” I pillaged today so I am still quiet. I’m kind of leery of this 23rd year…

“Cold, Misty Rain”

My Mom came into the house after taking something to the garbage outside and she told me that it was “Cold, misty rain” outside.” Moments after she said that to me, I felt it in my body. My entire body! That type of news can only be met with grunts and groans.

We watched Rocky 4 on Wednesday. Well, I started watching it, and my Mom came into the living room and started watching it just after Apollo died. When it was over, she told me that she forgot how good of a movie that was! I told her that I used to watch it all the time when Sean was young and I wanted to see it, because Paulie died this year.

My Mom told me how she and my Dad went to see Rocky when it came out at the movie theater. We watched that one on Thursday! I gave my Mom a synopsis of Rocky 2, Rocky 3, and Rocky 5. I told her that I used to watch Rocky 4 all of the time when Sean was young. I told my mom that’s the best one!

12.28.23 Acceptance.

I was wondering what my 23rd year would feel like. Sean said that it is my “Jordan year.” I was never a huge basketball fan but I would choose Detroit and I would be about the Bad Boys. But I can’t joke about this or say something cute.

I think after 23 years, I have entered my acceptance phase. About six months ago, I got the Medicare reenrollment catalog. My Mom read it to me, the part where it says that I am home bound. I knew that I was home bound, but to have my Mom read it, now she knows that I am homebound as well!

Do not get me wrong, it is not easy at all and I don’t like it one bit but I can do this. I’ve been thinking about this for a while, and I think the fact that my life did not change when we went into lockdown for Covid lets me know that’s what it is now.

As for my trifecta of my vision, my speech, and my nutrition, I’m handling that as well! My vision is fading, but I pray that it’s gradual, I will get Speech Pathology services next year because I used 22 in 2023. I don’t mind eating the same thing every day for the rest of my life! Eating is no longer easy or enjoyable, but what I do eat, I get my nutrition!

I never thought that my life would be like this, but I am accepting it. This is my acceptance phase in my quietness of today.

So Difficult

I decided that today was going to be the day where I was going to watch It’s a Wonderful Life.

I told my Mom today that this was the first movie. I learned all of the words to because my Mom loved this movie and we watched it so many times during Christmas time!

But now, as an adult, I realize how horribly sad it really is! I cried pretty much from the beginning to the end. I was a little bit shocked that I started to audibly sob when I heard Janie say, “There’s something the matter with daddy.”

I made the commitment years ago to watch it at least once a year, so I honored that commitment but this was so Difficult!!!

The Christmas Part

I watched half of Love Actually
yesterday. I stopped the movie just after Carl and Sarah have that unfortunate experience. I got my haircut yesterday and I was a little more tired than I thought I would be. I started watching it today after my Mom left to get her hair dyed, Watching Karen cry today really got to me and I couldn’t get that Joni Mitchell song out of my head! It actually made me think of the movie, You’ ve Got Mail!

After I finished watching Love Actually, I wanted to see if You’ve Got Mail was available on any platform that I subscribe to. Well, as it turned out, it was on ABC and was playing when I checked! When I clicked on that to watch the movie, it was exactly at the point where Kathleen has Christmas lights over her shoulders and she’s talking about her Store being in trouble maybe.

That was the exact part I was thinking of! It was COMPLETELY a Christmas movie for me today! I didn’t that it ends in the spring in the park in New York. Because I got to see the Christmas part I was thinking of it was good for me!

My Mom had put drops in my eyes before she left. Two drops in each eye because it’s like that now! So, after You’ve Got Mail was over, I HAD TO watch Meet Me in St. Louis because there’s a Christmas part to that movie as well! I was a bit tired to watch the movie because I had already watched multiple movies before, I drifted off to sleep listening to the trolley song but I was awake for Tootie being the ‘most horrible’! So I was awake for the Christmas part!

*Currently, I am contactless because my eyes are tired from watching so many Christmas cards to movies! Life is a trade-off, I appreciated seeing the clips of the movies that I saw, but my eyes are tired!!!

“Santa Claus is Coming to Town!”

So, I posted this on Facebook eight days ago:

I received a lot of laughter and likes from this post because everyone who knows me knows that this song is my jam. I did get one comment though:


I laughed at it because my cousinT Shannon and I were in high school when I told her that I HATE the Bruce Springsteen song just as she told me that she hates the Wham! song! She LOVES the Bruin Springsteen song!

After we came to that conclusion, we made a pact to listen to it, at least once a Christmas for the other person! So Shan, this one’s for you!!!:

Smooth

I watched 2 Netflix movies today that were COMPLETELY in line with my Christmas movie watching.

I first watched Jingle Jangle A Christmas Journey:

I didn’t see this one last year and it totally startles me that Forest Whitaker can sing?!!!

I accidentally put the video in twice, but I really liked watching it!

Then my Mom came to sit in the living room and we just let the movies play that were available on Netflix and we saw Holiday in the Vineyard and we watched that one too! It was really cute!:

But, the whole time I was watching these two holiday Netflix movies, my legs were spasming like crazy! Both of them! I could even feel it in my butt. I just have to ride out the spasm.

It wasn’t until my Mom was ready to go to sleep that she asked me what that shaking was as she sat next to me. It was my legs! They were shaking like crazy because I was having a spasm. But with my new foot pedals, my feet don’t jerk completely off of the foot pedal anymore! It kind of makes me think of this song that my Mom absolutely loves but my chair is really Smooth with all my adjustments!!!

‘Flush-er’

Dave, my wheelchair tech came over today to adjusted my leg rests. When we got my chair last Thursday, my Mom wanted Diane to show her how the electric lift works. I was transferred into my new chair from my old chair using the electric lift!

It was so beyond easy and it felt like I was on the Swings ride at Cedar Point! Because this chair has different pedal rests, they are longer (Which is very beneficial for me!) We did not realize how the longer length in the pedal would make it not fit flush with the calf rests. Transferring was a little bit painful. He came over today!

When he came in, I told him that it feels like this chair is made for me, and then we said laughing at the same time, “Well, it is!” my Mom explained how the pedals were not resting flat on the calf rests so it makes getting out of my chair, awkward to say the least. My Mom explained that to Dave as he had me recline in my chair and he did the adjustments as I was seated in the chair

As I was reclined, my Mom explained to him what was going on with the pedals Dave just said, “ oh, OK. It just needs to be ‘flush-er.’ I laughed at hearing him say that because that’s exactly what needs to happen. He was at my house for probably five minutes and we wished each other merry Christmas and he reminded us that he is available by text and anytime. He stopped by today on his way home from work.

Dave and Diane are my peeps now. While they have been for a while! I think I got fitted for my custom manual chair in 2013? Maybe it was 2015. I think I will have to look into that. I was just thinking that this being my second power chair, I won’t see them again for another five years, and I will be even more limited than I am right now. I really did like Dave describing it as. ‘flush-er.’

Over 5 years and 149 Days.

Well, my new chair is STILL comfortable! It’s still feels like it was made for me, because it was! I was talking with my Mom today, and I reminded her (mostly reminded myself) by telling her that Diane told us that with each new chair, there would be a little improvements.

The two biggest improvements I am noticing today, and it is such a small thing, but my foot pedals are a little bit longer so when my legs spasm (which they are doing a lot today, but a little less than yesterday, which is even less than Friday) I just put my hands on my knees and my feet don’t jerk off of the pedals!

The second thing I am noticing is that with each adjustment of my chair, it sounds so smooth! Everything is tight right now but eventually it will get rickety, but it’s not today! And for that I am so happy I looked at my Mom kind of wistfully, and I told her with tears in my eyes that I haven’t felt this comfortable in over five years and 149 days because that is how long it has been since I got a new chair!