Author: Jen Rios

So, last night, my Mon put fractionated coconut oil on my face. She originally bought it for Leia, but sadly, that’s not working out for my poor girl! I will use it for my face instead:

This is what my face looked like this morning:

it seems to be hydrating my skin! It was a little bit itchy upon application last night, though. My face itched a little bit today as well. My Mom read the bottle and said that I can use it, ‘as needed.’

I told her that my nerves can’t handle that because they really can’t!!! My skin is changing along with everything else. I think my smile is another thing:

I look like my brother and my eyebrows are getting waxed tomorrow. #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…

I woke up today and my aunt had messaged and suggested a cream for me to use. I opened Facebook and two of my Facebook friends gave me suggestions as well! My brother called my Mom and he told about something also.

My Mom comes to get me out of bed and she asks me if I put my face on Facebook? I told her that I did in my blog post yesterday and I’m surprised so many people read it!!!

I posted it yesterday because my face still hurts. I was hoping someone would have something to say. This disease progression is so terrifying! I think it’s terrifying because it’s going happen and I just have to deal with it.

I never expected my feet to hurt like they do now and I don’t understand what’s going on with my face?! I think after 25 years of having MS, my skin is so sensitive!

This was my face last night and I was awake when my Mom took this picture:

My Mom has coconut oil that she put on Leia which reminds me of the time that Leia had something in her mouth and she was walking to her bed to lay on it. I didn’t know what it was, but I told her to drop it! That’s the command my Mom uses. She dropped it and then laid down in bed. I got my grabber and I picked it up only to find that it was my mouthguard?!!!! How absolutely disgusting?!!!!

I told my Mom after she washed it that we are bonded now, me and Leia. Looks like what we bonded again because of what’s going on with my face.

Just glad that it doesn’t hurt right now. I will order some CareVe with my next order.

I have just figured out that I wrote about sleeping with an eye mask on January 5. My mom has started using Neosporin on my face because it was feeling chapped. It is February 15 and my face is still chapped and my Mom still is putting Neosporin on my face!

My skin has gotten so sensitive now, though. I thought to just put aloe on my face because I didn’t want the medication from the Neosporin.

That burned up like the dickens and I started to cry! My Mom had to wipe it off of my face and then she went back to putting Neosporin on. Am I going to have to use this for the rest of my life?!

Sean came by today and I texted him probably in the beginning of February when I saw that Dairy Queen is having their red velvet cake blizzard for the month of February! This blizzard has pieces of red velvet cake and cream cheese icing?! I told Sean that I wanted one back then. I did not think there would STILL be snow on the ground, but there is but I had one anyway!!!

It was delicious!!! I told Sean that maybe this should be a Valentine’s staple because I ate it when it’s cold so I can eat it when it’s warmer!!!

We had dinner and we watched a movie. I told Sean that we’re having dinner and a movie today. My Mom and I decided on Pollyanna. Sean told me that everyone quotes that movie! (my brothers and me) As we watched it, he understood where the quotes come from.

My Mom could not understand why he has never seen that movie and I told her that that’s her movie. I watched it when I was a kid. My movies are, Across the Universe, Jesus Christ Superstar, & Ben-Hur. Sean has seen those movies.

I recently told Sean about going to graduation parties and being the DD. I I told him that this is the song we would pull up to the party playing really loudly in my car!!! I am remembering one specific party where it rained and I think we were three or four deep at that point. I wanted to write about this song, but I’m not feeling it today. Here’s this song and I have a great story to go along with it! And as a 43-year-old woman, this is totally inappropriate!!!:

But I am totally not feeling the laugh today. I’m actually thinking about that article that I read and posted on Facebook because I really feel that today!!!:

https://themighty.com/topic/chronic-fatigue-syndrome/what-brave-means-looks-like-chronic-illness/?utm_source=healthandunwellness.themighty.com&utm_medium=newsletter&utm_campaign=the-mighty-newsletter_011326&_bhlid=c60cccac57377ddc7881434e6d55cd5a63ba497b

I reread this article and I started to cry, but not as much as I cried when I first read it, but the tears are still there because the feeling is still there!!!

So, I really wanted to write a lighthearted post about being the DD at an outdoor graduation party when it rains, and your friend has curly hair that she straightens. It was so funny! But yeah, I can’t laugh today.

Hopefully I can write about it later. I said that I was going to post the article. I posted it and hopefully I will write about it in more depths at a later point. Gearing up for go time on Wednesday… in the meantime, I am living the same exact day. I do the same exact things. It feels exactly the same. That is not good.

So, about the Super Bowl commercials. I was excited to be blown away, but I must tell you that I saw this commercial and I figured that might be my favorite one! And it was pretty early on in the game:

But then Christina Applegate gave her PSA… it shocked me to see her looking how she does but MS ain’t no joke!!! I was startled at how angry she is. She said, ‘join me for next steps when it comes to MS’ Or something like that.

That completely unsettled me and I just said to no one in particular, even though Sean was in the room as well. “There are NO next steps when you are diagnosed, You just have to deal with it! And it’s hard!!!”

I am still trying to deal with that! I still haven’t counted the doctors appointments I had last year and I know this year. I’m going to have at least 10.

I am completely startled at how 25 years of MS looks so many doctor appointments! With disease progression comes the necessity or more doctors to work on me…

But then I saw this commercial which made me laugh hysterically!!! Fast forward to today when my Mom was speaking to Sean on the phone and they both were talking about this commercial and they both started to laugh that warmed my heart!!!:

The last time I watched football on TV was 2022 Super Bowl when the Rams won with Matthew Stafford as quarterback. My eyes are starting to be an issue so I would just check the stats on my phone. I would watch occasional highlights as well.

I don’t know what it was, but I watched football this year. Well, playoff football. I thought Stafford would go all the way, but he did not. Sean and I talked about Sam Darnold and we liked his story and he told me how the Vikings snubbed him. We decided we were going to go for the Seahawks to win.

I am, by far, no stranger to Super Bowl festivities!!! I had Sean bring our Super Bowl party last evening. I ordered wings for him at B dubs, he also brought a shawarma for my Mom, and pizza for me. That’s the only thing I can eat now besides my “Tack and Gruel.”

I thought the commercials were OK but the game was underwhelming. I told my Mom that it looks like two second strings are playing. I couldn’t believe that this was the Super Bowl?!!!!

I thought the halftime show was all right, but my vision is becoming a thing. I didn’t know that Ricky Martin was in the halftime show until this morning. It took Sean telling me that it was Lady Gaga singing for me to know it was her.

I was expecting to see some good football and I did not. I think it was some time in the third quarter when Sam Darnold missed Cooper Kupp again, I said that Matthew Stafford would have put on better show and he DEFINITELY would have connected with Cooper Kupp!

Matthew Stafford is not retiring this year so maybe if he’s in the playoffs next year, I may watch it but my vision is begin to scare me a little bit… I still can see and hear that doctor the ugly glasses Home I never saw before or after telling me that ‘I have MS, I’m going to go blind, and then I’m going to die.’

My Mom called Urology to ask about my appointment(because that’s a thing now, I will see a urologist twice a year). It’s on the ninth floor. She also called the van rental place and secured the vans for February. Just 2 this month because I have one virtual appointment with an endocrinologist.

It was a nice time yesterday. I finished my pizza today. #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…