Author: Jen Rios

It IS ‘Birthday Month’?!

I almost finished my vanilla bean chapstick last night and it was so cold that a unpeeled a new vanilla bean. And here’s the method to my madness: 1. It’s difficult to control my hands in the morning and 2. I didn’t want to deal with the scrape on my lips while I’m still groggy when I wake up.

So, this morning, I had soft chapstick to put on my lips as I was waking up and then I watched Jesus Christ Superstar and I was touched by this song and I realized how small my life has really become now:

And then I was thinking about the 2018 Jesus Christ Superstar which I have never seen so I asked my mom if we could watch it tomorrow. It’s on YouTube and will put it on my TV! Well, it it IS ‘birthday month!’

I had to have a preview of our viewing for tomorrow and I saw thi:

3 Years Ago?!

I was searching for a song that was in Laws of Attraction because I just watched that. I was looking for the song that plays when they are going to get divorced but then I fell down a rabbit hole and I saw this alternate ending.

wait. What?!

So of course I had to watch it and I think I was too distracted by the greenery in the alternate ending so I prefer the first ending more.

Check it out:

NOT the Clip but…

I was talking to Sean a couple days ago and I told him that I am reminded of the movie, Love and Other Drugs. I know that I’ve written about that movie extensively because I really like it!

I want to watch it again but my Mom is living here with me now and I’m sure she’s not going to enjoy that at all! The reason I was referencing that to Sean is because there is a scene where she needs pain medication and she is trying to open her pill bottle. She is having a very difficult time!!!

I told him that I feel exactly like that every single morning as I am trying to open and close my nutrition shake. It’s about halfway through the shake that my hands become a little more normalized. And then I begin to squeeze my therapy putty.

I didn’t sleep last night and I am trying to find that clip but I can’t. I think this clip is just after the scene that I am talking about and that I was referencing to Sean but this is how it feels. I don’t have Parkinson’s so it’s different but the sentiment is the same 22 years in… This is not the clip and it’s a little crass but:

March 2023 Faves

I am a day late posting my faves for March. It’s my birthday month and I don’t know what’s going on?! Actually, I know exactly what’s going on!!!

I think what is happening is the culmination of 22 years with this mother b*tch is proving to be a little too much!!!

I have been listening to Carrie underwood. “Some hearts” Carrie underwood because that reminds me of our second apartment (Aug ‘06 – Aug. ‘09) when I would still leave my crutches at the front door I don’t walk around freely in my apartment. By the time I bought my house, I was using my manual chair all of the time.

This disease progression is really getting to me but I listen to these songs as I am absentmindedly playing solitaire or the match game and I am transported back there and that’s comforting for me because this hurts awhile lot!!!

I play the album on loop and these are some of my faves:


I am standing at the sink doing dishes and Sean is asleep. Maybe I am brownies baking… it’s all pretty bitter sweet.

Gypped

Well, today officially starts “Birthday Month” and I will be 41 this year but I have to tell you all that I will be gypped this year!

My actual birthday falls on daylight savings time day. That means I will be gypped out of one full hour of birthday festivities!!! That stinks! But it really doesn’t matter!

I watched The Quiet Man today because it is close to St. Patrick’s Day and I love that movie! I grew up with that movie and I named my son Sean!

The MOST Startling Statement

Today, I made the most startling statement. I called this morning to reschedule my doctor appointment with my PCP. I have been calling to reschedule this appointment for a while now! I have spoken to three different representatives!

Here’s the thing, I need to schedule my doctor appointments one a month. I started doing that last year and it worked out and I have the beginnings of this year scheduled.

The most startling statement came out of my mouth today I needed to reschedule an April appointment I had scheduled and I told the representative that I need a date for September. She was puzzled by that because I was rescheduling an appointment I had in April but I wasn’t going to schedule it until September?

Then I said it. It’s startled me! I told her that I am homebound and a power chair user and I need to schedule doctor appointment one at a time. She was able to schedule my appointment. I then called Creative Mobility which is my van rental place.

Just after I did that, my mom walked over to me and I told her what I said to the representative. Her eyes softened Jiang to me and I started to cry.

I was able to secure the dates for September and I also had to take care August 1 because we are getting our teeth cleaned. I used to love making my class schedule in college and I guess my life has reverted back to that. I’m not sure how I feel about that…

Stunned Silence.

I will have had my blog for 10 years in November. I originally started my blog to tell Parker how I was doing at Barwis Methods. After my injury, I still wanted to chronicle my recovery. Physical therapy and all of that. Now that I am no longer working, I use it more for my sanity.

I share what’s going on with me after having had the MS for 22 years. I really feel that 22 years is a turning point! I have never had MS for 22 years so all of this is new to me but I will tell you that I do not like it at all! It is all very startling!!!

I remember overhearing two foreign men yelling at each other when I was about eight years old. They had just gotten in a car accident and they both were hanging out of their driver side window calling each other, “Mother b*tch!” My Mom doesn’t like me calling it that but that is what it is!!!

I had, “A first” after 22 years of having this disease. I have been writing about this new occurrence for a couple of months now I think. But then, I had an experience. I didn’t really like it. It made me uncomfortable!

Last Wednesday, my brother stopped in as my Mom was making my gruel. I first told my brother about the trifecta I am dealing with right now. I am dealing with issues with my chewing, seeing, and speaking.

I have been addressing all of these things since they started. I just met with my Speech Pathologist and I will meet with my nutritionist on March 8. I bought more contacts because I still am wearing the daily contacts. I will meet with Dr. Harris, hopefully in June, but I don’t think my prescription will change even though my vision is.

He listened intently and my Mom walked over to show him what I eat. He was silent. It was a sort of stunned silence. I have joked with my Mom that I only eat ‘hard tack and gruel’ because I really do.

I called my friend because she dropped Girl Scout cookies off that I ordered from her daughter the day before. We worked together and we partied together and I told her what I eat and I heard the stunned silence again. That does not sit well with me at all! I have written about it and personally I’m trying to work through it as well.

I don’t think I will say the words to people anymore because that was painful to see their reaction but I’m sure I will write about it because I need to work through all of these changes and they are coming at me fast and so hard!!!

Cathartic.

Today is the first Friday of Lent. I did my duty and in lieu of going to stations of the cross, I watched Jesus Christ Superstar. I cried at all the same spots.

I find that movie very cathartic! And I still think Caiaphas’ hat would have been so cool to have when I was younger! But not now because I’m about to be 41!: