Author: Jen Rios

“I Don’t Eat or Brush my Teeth”

I told my Mom back in the summer when she was putting a load of laundry on in my bedroom. That was when I started drinking two protein shakes instead of eating food for breakfast and lunch. I just told her matter-of-factly that I don’t eat or brush my teeth! We both started to laugh because I had just started using an electric toothbrush and instead of eating solid food, I substituted shakes for breakfast and lunch.

But now I REALLY DON’T eat or brush my teeth! I started using an electric toothbrush in November of 2021 because I had lost ability in my hands to hold my toothbrush and not make myself spit out blood.

Just last month, I changed over to nutrition shakes instead of protein shakes to allow myself to have more energy and for lunch and for dinner, my meal consists of overnight oats, stove top stuffing, and saltine crackers. I talk with my nutritionist again in March.

It seems that all of this loss of ability is starting to mound up and that shocks, startles, and depresses me!!!

“Sweeter”

Today was the first day I drank the Sweet Vanilla Orgain nutrition shake. I drank it just before I pillaged this week and I have decided that it is, “Sweeter” than the chocolate ones. I’m not sure if it’s the taste or because now because I get them from Target that they are five dollars cheaper. So I’m not sure but you know I thought of this song for sure:

No More Backless Dresses for Me!

I just finished my monthly outing and I did not get a haircut because my hairdresser had to cancel. That means that I will not have had a haircut for the entire 2023 year. My last haircut was on December 22, 2022 but I have gone a year before when we were in lockdown so it’s no big deal!

I was able to get bloodwork and a weight for my nutritionist. Yesterday, I had a cyst on my back looked at. I received the results not too long after I got back home and it will not have to be removed because it is not cancerous. I talked to Sean yesterday and I told him that, “It looks like no more backless dresses for me!” And then we both laughed but I told him that my Mom is the only one who sees my bare back anyway.

SO Late to This Party!!!

I think that it must have been a couple weeks ago when my mom and I somehow stumbled on to watching YouTube videos and we ended up watching videos about both Dolly Parton and Kenny Rogers. Sean said that we were very GenZ because we were watching YouTube videos on my TV.

I really liked watching the documentary and I told my Mom that I wanted to rewatch the movie, Dumplin’ and we watched 9 to 5. I couldn’t get over the fact that she is such a great songwriter and I put her playlist on my Apple Music as I was playing solitaire. I think it’s crazy that I heard this one and it’s new and she is 77 years old and STILL singing! I am SO late to this party!:

2:37 (Actually 2:36 or probably last July.)

I had this realization add 2:37 this morning. Actually, it was probably at 2:36 this morning but I didn’t think to take a picture until 2:37:


I took this picture this morning after I told my Mom that I finally realized that I was homebound. I remember Sonya, the wound care nurse, said that to me and I kind of agreed and said I just go to the doctor and four haircuts once a month. That was back in July!

It made sense when I talked to her then but that is really all that I do. Tonight I am grabbing my guts because tomorrow is, “Go Time.” I am not really bothered by this natural progression of my disease because I knew that it was coming. My Mom, however, it’s another story, I think…

“It Was Your Passion!”

Well, I did it. I did not watch any of the Super Bowl! I know who won and heard that it was a good game. This afternoon, I told my Mom that I saw an ad before a YouTube video I saw and I’m sure it was from the Super Bowl and I was completely clueless of the joke.

She saw my pained face and responded with kindness. She looked at me and said, “Oh! It was your passion!” Because it REALLY was! Especially when Sean started playing football and I began to cry.

Football DEFINITELY was my passion and I remember Sean volunteering me to voice the game from the scaffolding on the sideline when he was in sixth grade. I definitely could not do that but I enjoyed watching the NFL network all day long!

But now, being on disability for so long, I had to make some changes. I no longer subscribe to the NFL network and football games are difficult to watch because they are in HD and the movement is hard for my eyes to track!

I‘ve seen a few Twitter highlights of the game but I really am not looking for them because that is a little painful because I could not be a part of the festivities when they happened. that’s SO DIFFICULT for me. I will put all of those memories in my memory box to pull out in due time… #MSsucks!!!

Bitter Sweet

I have had so much on my mind and I cannot even begin to sift through it! All of this and the Super Bowl is tomorrow. I have been a huge football fan since Sean started playing when he was seven! This is the first year that I will not be watching because my eyes can’t handle it. HD is too difficult so I have been watching older movies with my mom and my eyes are OK with that.

I saw this tweet earlier today;

I had one answer for this question and it makes me think about everything going on makes it so much more bitter sweet! Here was my obvious answer, duh!!!:

I have been lying to myself telling myself that I can watch the Super Bowl! But, seriously… 22 years is a little bit too long…

I have made this decision just today that my football watching it now in the past. I’m grateful that last year my man got to be on the mountain top and I got to watch that! I have it recorded and maybe one day, I will rewatch it but I think my eyes have had Optic Neuritis in both of them for too long.. #MSsucks!!!