Author: Jen Rios

I had trouble swallowing today while I was eating my dinner. It wouldn’t be so concerning if I didn’t have difficulty yesterday swallowing my dinner. Maybe it was my lunch. Either way, that concerns me. I’m concerned.

The summer of 2019 was when I decided that, “Eating is no longer easy or enjoyable.” I think it was October 2023 when I started talking to a nutritionist.

I was losing weight and I couldn’t understand why. Her name was Sarah and we talked about nutrition shakes. I told her that I am, ‘lactose not a good idea’ so she told me about plant based nutrition shakes.

I drink my first meal of the day and have overnight oats infused with protein, saltine crackers (those just melt in my mouth annd then I swallow) and chicken stovetop stuffing. I have turkey stuffing in the fall and winter but it’s chicken now. I have eggs on Tuesday, Thursday, and Saturday. That makes me feel better before I pillage.

I worked with Sarah to figure out what nutrition I needed because I do not leave my chair. She told me then that if I have too much protein, I will just gain weight. It is a complicated dance, but it’s really not because I don’t mind eating what I eat.

I had changed what I ate to make things easier, but the fact that I am having difficulties swallowing, concerns me. I’m concerned. It’s not emergent yet and I have my Yeti right next to me at all times. This just concerns me. It progressive and I’m nervous about that a little bit.

We do go to the Cider Mill once a year so I get cider and donuts, my aunt Lola sends her Christmas cookies for Christmas and my birthday, and my sister-in-law provides us with sides on Thanksgiving and Easter. I do not feel like I am missing out at all.

I never thought that eating what I eat would be difficult at all. This is concerning. I am concerned.

my mom told me about this movie yesterday and today I got an email from Netflix so I watched it. It’s cute!:

At my dentist appointment in April, Sarah, our hygienist decided to take us both at the same time. She did my teeth first in the office that Sean used to get his teeth done and my Mom to the room I usually would go to with Kristen.

I waited while Sarah did my Mom’s teeth and then the dentist was going to come in into both of our rooms.

This is the only dentist office that I have known for my entire life! The chairs are no longer situated how they were in the rooms, but I don’t sit in them anyway. I just get my teeth cleaned in my power chair.

They have weird sounding music now! I think it’s just because I’m old! I don’t even remember the dentist’s name. It’s different now because it’s a corporation. I’m not sure that I will ever see her again. She had on those magnifying glasses so I didn’t even see her really.

It was endearing to me when Dr. Fox did it because I hand known him for my whole life! This just feels impersonal. After listening to music that I did not like, I did hear an Adele song and a Summit Place Kia commercial:

I’ve heard that song for my entire life and it was nice that some things are still the same. When the dentist came in, I asked her which tooth my cap is on. She told me that it was 14 then she said, “Wait” and asked me to open my mouth again and said that it was 14.

I think I was 16 when I cracked my tooth opening a water bottle. When I worked, I would rest my tongue on that cap. It was smooth. I did that when I was grading papers or balancing my checkbook. I had forgotten which tooth it was because I hadn’t rested my tongue on it in a long time so I just wanted to double check.

Something happened this morning and it’s the first time it has happened for 25 years. It happened when I woke up and sat up just before I was going to get out of bed and just before I got ready to complete our routine.

This disease progression has really been smacking me in my face for a while! It’s a lot!

As I was getting ready to get out of bed, I just thought about how difficult it was going to be, and I covered my face with my hands starting to cry a little bit. But then when I had to transfer out of my chair, one more time, I started to cry again but I couldn’t cover my face because my arms were around my Mom. It hurts.

It feels like a lot today. I don’t know what’s going to happen before I transfer again to go to bed. I’ll let you know if I cry or not. This is really strange to feel like a lot. It keeps smacking me in my face!!!

I had just awakened and groaned as I set up in my bed. After a little while, my Mom walked over to my doorway, and simply said, “Your socks arrived.”

I had gotten a phone call from Befitting You stating that my socks had not shipped yet but they’re going to be coming soon. I thought that I would get them on Tuesday because I got the call Friday evening.

I let what my Mom said to me sink in. My eyes burned and one big fat tear streamed out of both eyes and down my face. I said to myself, “Praise the Lord! My legs are killing me.”

I was excited because I have been without my compression socks for 29 days and I don’t understand how I went without them for six months when I had my pressure sores but that was four years ago. My disease has definitely progressed in the past four years.

What I was NOT prepared for was when my Mom put my socks on today, she always starts with my left leg because my right knee has been broken twice.

I don’t even remember what thing we were talking about, but it was just a ‘nothing’ conversation as she was putting on my socks, but as she got halfway through putting my sock on, I cried a quick succession of big fat tears! I waited until she was done to to wipe my face.

She asked me how my leg felt and she moved over to put my right sock on and I just said, “Calm.” Then she started to put my right sock on, and the tears started again! I waited until she was finished to wipe my face for the second time.

I would still working when I started wearing compression socks. I think it was 2015? I can’t believe that in 21 years my legs have gotten so terrible without them! I really wonder what my ultrasound will say about my lower limbs. I go on May 22.

Itit is a bit weird to be able to see my toes because I haven’t seen them for over a decade. I put this in socks. I usually wear with my shoes on when I pillage it because I couldn’t handle my toes being exposed.

Well, I guess when it rains, it pours.

Last night when I was getting ready to go to go to bed, my Mom brought my chair over to me so I could transfer to it to go to sleep. But here’s the thing, she calls it ‘jutty’ but I call it ‘shaky.’ my wheelchair shakes when I move in it. It’s a dull vibration and it kind of scares me!

My Mom spoke to Ray at NSM today and she is going to take my chair into them on 20 May. I have a van rental that day and my Mom and I are hoping that it is just a quick fix. Ray says that he won’t know anything. until he sees it.

My chair just shakes a little bit and it scares me because what if it stops working?! I have three appointments to leave the house this month. I hope it stops being shaky on the 20th and then I can get my haircut?

We are hoping that it is a quick fix because it just had the batteries replaced not too long ago. Currently, my chair is staying fully powered and it’s moving back-and-forth and the hydraulics work and it. That’s why I hope it’s nothing that can’t be fixed really quickly!

I saw this article today and I was surprised that my bed was listed NOT as the first item!!! That bed is the BEST PRESENT that my PARENT’S have ever gotten me!!!

https://www.mymsteam.com/resources/finding-the-best-mattress-for-multiple-sclerosis

I remember that this all had to happened in 2022 because that was the fateful year that I got my pressure sores from April to November. I will never forget that as long as I live. !!! That was so brutal!!!

I was trying to look through my archives, but I couldn’t find it. The post that I wrote about my Mom telling me that the bed she was going to buy for me was ‘a present from my Parents!’

I thought that I had already written about this, but I’ll just talk about it again. My Mom and I were talking about what kind of bed I needed because the bed I had was no longer working for me. My lawsuit had yet to be settled and I thought I would be able to get one for myself. My Mom recognized the urgency of my need for this bed. And she knew it was the kicker to say it how she did! I had no choice, but to accept it!!!

I don’t think my Mom told me this until 12 years after my Dad died and we were better about talking about him:

The day I was diagnosed, or told about my diagnosis, was December 28, 2000. My Mom and I drove to the hospital together. And then I got to a diagnosed by that horrible doctor. My neurologist gave me five or six hardcover books that told me about MS. All I did with them was throw them in the backseat when we were at the hospital. We had driven my car to the hospital, I think. I thought nothing of those books and I didn’t even read them, I just went to see my boyfriend.

I think it might’ve been four or five days later that my mom told me to not leave those books in the car. I put them on the dining room table. I absentmindedly flipped open one book and read the first line. I don’t even remember what it was but I remember thinking that that wasn’t going to happen to me so I didn’t see the need for me to read them. I still had a few steroids to take so I was going to be better when my pills were gone anyway.

Well, in these past 25 years I must emphatically tell you that whatever I read ABSOLUTELY happened to me and when I was 18, I did not think it would get as bad as it is now.

What my Mom told me about 12 years after my Dad‘s death was that he read ALL OF THEM!

I ask her to tell me the story all the time because I absolutely love it! It shows the fact that my dad was completely a man of few words! This is a conversation between my Mom and my Dad. My M is Mom and my Dad is D:

D: Mary, this is bad!

D: Want me to tell you about it?

M: No.

M: Ray, I’m going to live it.

M: It’s going to be expensive.

D: Yeah.

M: We have to help her.

D: Yeah.

That is such an important conversation and it is just eight statements. That’s why she knew to say that this bed was a present from my Parents. I had to take it. My Dad had already agreed to it while he was living, and I was NOT going to disrespect him in his death?!!!

My Mom told me that she is starting to forget this story so that’s why I wrote it here because I never want to forget it and I don’t think I ever will!!!