Category: A Bit Of Randomness

I think that I have been feeling badly since January 11 when I spoke to my nutritionist but then disease progression seemed to pick up The pace at the same time and I am completely dumbfounded!

It’s really taking me some time to get my footing because my head is reeling!!! I sent this meme to my Mom and I laughed hysterically and she was surprised that I did:

I never thought that things would come to this but here we are. My Mom got me out of my bed and I washed my hands and got my morning pills out of my pillbox just as my Mom was coming into the living room from the kitchen with my nutrition shake because now, that needs to happen immediately! I get to faint because I have been sleeping all night!

She walked over to my chair with my shake and her hand and I looked at her and had my Duluth hat in my hand and before I took the shake, I affixed the hat on my head at the same time I was telling my mom, “ I’m not combing my hair again today!

I didn’t comb my hair yesterday either. I cannot control my body temperature at all now so it really doesn’t matter that I didn’t comb my hair because I haven’t seen it at all yesterday or even today because I wore my hat all day yesterday and all day so far today. But, eventually, I will have to wash it and I’ll comb it then!

Yesterday, I shared this meme with my Mom and I laughed hysterically which she could not understand why. I went two days without combing my hair and this morning, before I put my hat on my head, I combed my hair:

I have not been feeling well for about a week (well, really for 22 years) and I still don’t feel well but it’s a “best” day because my hair is combed now! That’s why I laughed so hard! I feel no differently and everything still hurts but somehow things are better just because my hair is combed?!

I met my best friend Ami when I was working at dfcu financial just after I had Sean. We immediately hit it off! We had the best time sitting by tether as tellers in a credit union but when we both were working in the drive-thru, we had the BEST time!

It’s been 21 years since I met her and we both have been through so much and we completely understand each other! She sent me this meme today and I had to respond because I loved it:

I texted her this immediately:

I am completely convinced that there is a reason that we are friends! She is the BEST!!!

I made a decision today. It was kind of sad for me. I know that I am completely being melodramatic but my decision is that this will be the first year since 2009 that I have not been interested in the Super Bowl. My eyes can’t handle it.

I was talking to my Mom about it and I had to verbalize what I was thinking. I had to finally admit that my eyes can’t handle it. I knew that it made no difference to my Mom but I had to say it. That made me sad!

I am sure that I will catch highlights during the game on Twitter and I may watch parts of the Super Bowl. I’m not sure. I told my Mom today that last year I couldn’t even eat my Super Bowl food so this year, I can’t even watch it. #MSsucks!!!

I am indifferent to both teams who are in the Super Bowl this year but I really like this storyline:

https://apple.news/AQ0S3Qey5RdejQUO6Pv52wg

I decided to conduct a litmus test. My own personal litmus test:

And here is my personal litmus test: I have combed my hair every day for the past four days and I just want to report that, “best” NOTHING!!!

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;

Name a NFL Player that helped you fall in love with the sport?

— Damien Scott (@MadScientistFF) February 10, 2023

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!!!:

Matthew Stafford!!! 😍😍😍 pic.twitter.com/feyKrKgX3v

— Jennifer Rios (@jenrios0945) February 11, 2023

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!!!

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!!!

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…

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.