Author: Jen Rios

Legends of the Fall

My Mom picked up the van today because we have an early dermatology appointment tomorrow. As she went to pick the van up, I watched Legends of the Fall:

I haven’t seen this movie in a long while but I know that the last time I saw it was here in this house but that could’ve been seven or eight years ago. I put the movie on when my Mom left to get the van because she didn’t want to watch it. She says it’s too difficult of a watch!

I think that I cried a little bit more today during all of the sad parts because I understood it a little bit more. Tristan was nuts! I still loved Anthony Hopkins’ line in the beginning about failing at raising his boys and the fact that he was trained to lead men, so what did he know of raising boys?!

That is such an epic line and one that resonated with me, since I saw it for the first time! I like that I watched it and tomorrow I am leaving the house and it stinks that the weather stinks!!!

NOT COOL!!!

At 10:06 at night on April 24, how is it 39° outside right now?! Absolutely not cool!!! I am still wearing a winter hat in my living room! It probably doesn’t help that I need new windows and the fact that my internal temperature gauge is broken. That’s how I explain it to my Mom at least. But this is absolutely NOT COOL!!!

”That’s NOT a Thing Anymore.”

I saw this meme today, and I stared at it silently for a while:

I showed this to my Mom a little while after I posted it on Facebook. She read it and told me that she wants me to do things like that, and I interrupted her by saying, “That’s not a thing anymore.”

Because it really isn’t. I have a head filled with memories, and that seems to be working. It is a sad realization, but that’s how it is now. I never thought my life would be like this, but this is how it is… #MSsucks!!! 😒😒😒…

Background Music

I am aware of the background music every time I get my haircut and conversations take me away from it sometimes but I still hear the music. On Wednesday, my hair was cut and my eyebrows waxed. My Mom’s was getting cut by her hairdresser so I sat in the waiting area and I heard two songs from my youth! I am in high school and just graduated! I heard the songs and I smiled:


I sat there and thought about my more able-bodied days, and I smiled. I never thought that would be something in my past, but I’m so grateful that I experienced it!

Focused

I am most grateful that my hips knew how to behave yesterday during ‘go time.’ I sat up straight in my wheelchair and got my haircut and eyebrows waxed, and my hips did NOT hurt. That was even in the rain! I think I attribute that to having the same hairdresser for the last 21 years. I am so comfortable with her! But I am focused each time I leave my house because I am so uncomfortable and in that focusing, my hips didn’t hurt.

We heard rain on my roof so we hurried up and I got out of my house and into the van. My Mom already had the van ramp out. It was not a back loader, but rather it has an undercarriage ramp that comes out on the right side of the car. I just got a little bit wet!:

The first day I got my first power chair (I’m on my second one now), Diane explained to us that we needed to use a grocery or Ziploc bag over my joystick when it rains because there is a lot of computers stuff in the joystick. My Mom reminded me of that yesterday.

But, I guess that I am not a very good photo journalist, because I should have taken a picture of the downpour that I could see on the windshield! As soon as I got into the car, my Mom pressed the button for the ramp to go back under the van and she went inside to get her umbrella.

She was going to take Leia out before we left, but my Mom put her raincoat on her but she said that when Leia saw the rain outside she backed up.

This morning, just after I sat up in bed, I was going to have my Mom turn the light on. And just after she switched the light on, I told her that my hips are not behaving anymore. She just said “Good!” I had to speak a little louder and tell her they are NOT behaving, so I am going back to reclining.

Lately, I am so EXTREMELY happy that my chair accommodates the pain in my hips!!!

Recovery Day #1

it’s Recovery Day #1 today. It’s a contactless day for me today. I am listening to Laws of Attraction right now. I was so exhausted yesterday but I don’t have to leave the house again until next Friday.

I was talking to my Mom today about my disease progression. This is the first time that I had to give a urine sample. I will give them every three months at the same time, giving full blood panels every six months! Dr. Chamas told me to see her in three months when we saw her in March. I don’t think I’m really prepared for this but it’s happening!

I never imagined that my life would be like this, but it is. I can do it though! It all makes sense to me. I’m not afraid of going to the doctor just like I haven’t been afraid for going to the dentist for my entire life. Now I just need to go a lot more often!

“Go Time” Eve

Tonight is ‘go time’ eve. I’m getting my haircut tomorrow and I need to drop off a sample to the doctor as well. My MS is definitely progressing and it’s a little bit concerning! I’ve spent today gradually sitting more upright because I have to get my haircut tomorrow.

It’s kind of crazy that I’ve been thinking about when this started with my hips feeling how they feel. I was ripped out of my sleep on October 28, 2023 with both of my hips burning excruciatingly! It was in December when I started thinking about the possibility of me having Osteoporosis. I got my bone density scan on February 2, 2024. I will go for my repeat bone density scan in two years.
My Mom read the report to me in the car that said I had it.

I will not meet my endocrinologist until May 16. I think it’s a really good thing that I met with my naturopath on February 21. I have been taking a supplement since then actually four wafers a day since then. I originally thought these wafers tasted like saw dusty bottle caps. (that candy from the 80s) but now I have decided that they taste like the teething biscuits my nephew had when I was 13.

I chew two wafers for lunch and two wafers for dinner before I take my vitamins. It’s pretty gross in my teeth! Maybe it is a little bit like sawdust still…

Tonight I will just ‘twilight sleep,’ so then I will be able to place my supply orders For the month. My year is completely planned out in terms of doctors. Actually, I still have to make my virtual neurology appointment. But that won’t be until August and I will not leave my house for that.

From Awareness to a Moan…

So, I became aware of my hips a few days ago. It was not necessarily hurting, but just a little odd. But now, I have gone from awareness to a moan. It’s just a moan because it doesn’t hurt So much but something is moving. I have to be ginger with it! My Mom will get a little exasperated, and I have to remind her that I have osteoporosis and my bones are getting thin!

I don’t see my endocrinologist until May 16. I did looked it up. It’s a woman and she is a fellow, first year fellow. I told my Mom that I think I may be like a deer in headlights at this appointment so she should take point. I think. I will see her two months before I see Dr. Skatf’s replacement, because he retired as well.

I think I was aware of my hips for a few days but now I’ve started moaning and I wonder when it will turn into a groan and when it will really hurt whenever I move!

“Your Feet are So Small!”

Here’s the deal, my brain is slowing down. By that I mean, when I spoke with my Speech Pathologist at the beginning of this year, she told me that I am slower, but I am not unintelligible, so I don’t need her services right now. MS is a progressive disease, so I’m not sure when I will need it again, but she is already on my team of doctors.

I need to say this first, as I explain that there is ‘method to my madness.’ I want to say that this all started in October 2021. That is when I heard a commercial about the Bible in a Year with Fr. Mike Schmitz. I started the Bible in 2022 for the first time. I got pressure sores on both of my heels that were a thing from April to November of that year. I think the pain was a lot more excruciating than I was experiencing, but I got through it. actually, my Mom and I got through it! She took such good care of my feet!

I am in my third read through of the Bible and yesterday, I heard John chapter 13, 14, and 15. That is the beginning of the Lord’s passion, and when Jesus washes the apostles feet! I listen to the Bible twice in the day. Once when I am trying to wake up and be ready for the day and then I listen to it a second time when I am going to sleep just to hear it again, because I am slowing down, my thought processes, I mean.

I listen to the Bible passages while I am laying in bed for the second time. Last night, Jesus washed the apostles feet, and I was completely reminded of Mr. Flint and my New Testament class!!! He washed our feet! He wasn’t going to wash the entire classes feet, rather, I think it was about five or six students. He explained it to us like this, he was going to wash some of our feet and he put our names on pieces of paper. He was going to read the names, and each student would decide if they wanted their feet washed in front of the class.

All I remember is that with each name, nobody wanted their feet washed! And then I remember when he saw my name. He took a breath and said. “Jenny Rios.” I shot up out of my seat and put my arms over my head and yelled as I ran to the front of our classroom like I was on The Price is Rght! I was seated in the back, so it was a very dramatic run! I was way too much back in high school!!! in retrospect, I’m glad that I lived it up because I was not prepared for what MS was going to do to me…

This being the third read through the Bible, but for my second, and for my third read through, I am reading the Bible twice. Maybe this is my fifth time through the Bible?! I will say that I am slowly getting more understanding after hearing the Bible. I thought I had understanding going to a catholic school for my whole life and being a Bible quiz champion. But I did not really know the Bible like I do now!

It’s only now that I understand, or I’m beginning to understand what Mr. Flint was doing! I’ve always thought the washing of the feet was such a beautiful thing at mass on holy Thursday! But when Mr. Flint did it in our classroom, after he was finished, washing my feet, he said, “Your feet are so small!” I remember, laughing and telling him, “These are my feet?!”

So, I drifted off to sleep last night with fond memories of Mr. Flint as I was listening to the passage recounting the Lord‘s passion, and I smiled!!!

Aware. A Little MORE Than Aware…

My hips. Oh, my hips!!! It does not hurt per se, but I am very much aware of my hips. More than aware! I am reclined in my chair, and I told both my mom and Sean (he came by today) That it doesn’t feel good! I made the face of how it feels and it’s not good:



This is the face. I am making all day long because it doesn’t feel good! I will get my eyebrows waxed on Wednesday. This stinks! But I’m very grateful that it doesn’t hurt so much, but it doesn’t feel good at all!!!