Author: Jen Rios

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!!! 😒😒😒…

I started off this week making medical calls. I first called Meijer pharmacy and inquired about a shingles shot. Two people I know have gotten them. And I have heard that it hurts so I don’t want to deal deal with that in addition to what I already am dealing with!!!

The person I spoke to at the pharmacy told me they needed to check if I was eligible because I told her that I am 43 but I have had MS for 25 years. I waited on hold for a bit and when she came back, she told me that I am eligible, but that I should first call my insurance company to make sure that they will pay for it.

So, on Tuesday, I had my Mom call my insurance company. She called them just after I had awakened. As it turns out, it is covered. The woman at Meijer pharmacy also told me that it is a two shot regiment to get vaccinated for shingles. Two months after I have the first shot, then I can have the second one between two and six months after my first one.

So that is what I started thinking on Tuesday. I have other vaccinations I need to have because I have been immunocompromised for 25 years. I think that I will get my first shingles shot in March after my appointment with Dr. Chammas but I don’t think I’ll be able to get my second shot until June because I get my Covid shot in May.

So, I have been trying to think about my vaccination schedule coming up. This morning, I just got notice that the second specialist appointment went through from last month.That means that my payment plan needed to be adjusted.

I called them today after I drank my nutrition shake. I had to wait on hold for a little bit with them too because given how big my balance has become, they weren’t sure I could keep my payments as low as as they are currently.

That shocked me a little bit because I only have so much money a month! Luckily though, I can keep it the same, but I will be paying the hospital until June 2027.

So, I started the week out talking about medical stuff and I ended the week out talking about medical stuff in a different capacity. So this week was bookends for me handling my biz. This is becoming so much!!!

My Mom just read me the costs for my medical care for the past year which was more than I got paid my last year working. In March, when I see Dr. Chammas, I need to ask about seeing a vascular surgeon. They are the ones that handle the circulatory system.

It looks like I have to see my 14th doctor now. My Mom is concerned about how cold my feet feel pretty much all the time.