Author: Jen Rios

Executive Decision

Okay, Let me first start out this post by saying that as a rule, I do not drink alcohol while attending a live concert. I do this because I want to experience the band in full force and of sound mind! I don’t want to forget anything! But, when handed a large cup of beer, I just have to drink it. It’s the polite thing to do! That is what I did the one time I saw U2 live at the Vertigo tour in 2006.

Another reason that I do not drink at concerts is the long lines To go to the bathroom! Well, there is only so much alcohol that my bladder can’t hold So I had to make the executive decision to choose which song I would leave my seat to go to the bathroom and I wasn’t even sure how many songs that I would miss! I decided to leave when this song started and I have since been chastised for not watching them perform this song in order to go to the bathroom:

There was no line to the bathroom so I was able to get right in! That made me happy because I would only miss one song. As I was washing my hands at the sink, two very drunk woman came in. I was leaning against the sink with my crutches on either side of me because I was still able to walk back then. One of the women could not believe that I was there! She gave me tons of accolades for coming to the concert and being disabled.

I told her that I would walk through fire for them because this is my favorite band to which she responded with a haphazard and drunken hug that I was grateful that it didn’t knock me too much out of balance. Such a random encounter with two strangers but I still remember it 15 years later! My, “Concert going” days are over now but I appreciate you having gotten to see u2 at least once!

“For Til College!”

I saw this on Facebook a while ago and I don’t believe my son is grown up as of yet. However, we were thrust into a strange world once Covid hit. He had to move out of our house to continue working and my Mom moved in with me.

Sean came to visit me last Saturday since we are all vaccinated. It was really cool to hang out with him! And, before he left, probably in the middle of our visit, I asked him to get my extra supplement bottles off of the desk under my TV because I was refilling my pillbox and it was in that moment where the quote I saw on Facebook made sense!:

One of the supplements I take is called, ”For-Til B-12:

I asked him to get me that bottle and as he grabbed it, he said, “For till college!“ and I immediately started to laugh! He started to laugh as well and I reminded him that, “Carly kisses like a princess!”

So, I think that I am just nervous about my son being grown-up but we had a great laugh talking about all of the TV shows we watch together when he was growing up:

Vertigo

Sunday evening, my Mom was getting really dizzy! I was extremely concerned and she called the doctor on Monday. They could see her on Tuesday. Tuesday, she was told what she had:

She was told that it is not life-threatening but more of an annoyance. But maybe the real annoyance is that whatever she tells someone about having vertigo, I immediately sing the opening bars of “Vertigo” by U2.

She is slowly getting better and I ask her every morning how the dizziness is. Tuesday, my brother Dave stopped by to transfer me because that makes my Mom MORE dizzy. Sean came by to do the transfers on Wednesday and my Mom was walking into his bedroom where she sleeps now and as she was walking into the room she told him that she has vertigo. He thought for a moment and looked toward me,who, right on cue, raised my left hand and started counting out on my fingers as I said, “Un, dos, tres, catorce!” Sean started to laugh and said that he was waiting for [my mom] to say something about u2.

What can I say?! He IS my son! AND they ARE MY band! But counting out the beginning of that song lays bare how grammatically incorrect it is. My little cousin, Al, told me that. She pointed out that Bono is saying: ”One, two, three, fourteen in Spanish.” I told her that he has “Artistic freedom” because it is a song and he’s Bono! He can do WHATEVER he wants to!!!

My Mom let me listen to “Vertigo” as she washed my legs today and I was reminded of my freshman year in college as we listened:

My Favorite Holiday

Okay, so I already know that this holiday is not technically a REAL holiday! It didn’t become a holiday for me until I after moved into my house. Sean and I went to a Super Bowl party at my brother,Steve’s, house. We missed the beginning of the national anthem but we got to watch the game there. But then, I had to drive home!

We stayed home to watch the Ravens beat the 49ers in 2012. I even got Sean a Ravens that that year. We were just talking about that yesterday and he wonders where that hat is. It has to be in his closet or something! I can completely get into a football game for sure! I think it was a couple years after that when I would order B Dub’s for the game.

Sean is NOT a big, “Bandwagoner” like I am, but he likes B Dub’s and football! I didn’t even mind when he was in high school and he would watch the game with his friends. I would just watch the game by myself and eat my B Dub’s‘s by myself. When he would get home, he knew there would be food in the fridge.

but me talking about this before is me not facing the magnitude of the new development of this disease. I am having difficulty chewing. As per my swallow test, swallowing is NOT the problem but chewing is. I cried when I realized that I no longer could have my “Super Bowl food” but it’s really so much more than that! This is a big deal and one that will take some time to sort out.

As for football, all of last year, I checked the scores on my mobile NFL app. because my Mom does NOT enjoy watching football at all! But, my Mom is still here with me and the next season is starting?!

But here’s the thing, MY man left Detroit:.

It’s going to be a very strange season for me because I have always been a Lions fan but, the new coach’s voice irks me and I was 100% behind Schwartz in Caldwell. I tolerated Patricia, and now the squad is some thing I don’t recognize with everybody leaving. I don’t think I will watch football during the regular season as I want to but I will for sure watch the Super Bowl which I 100% intend for MY man to win! What I eat (or better yet, drink) I guess won’t really matter.

September 2021 Faves

I’m thinking I want to hear u2 this month. Old school u2!!! These songs are from my childhood before I even knew that I would learn to love them! This songs are completely hearing it coming out from my basement as I was cleaning on the weekends or laying on the green carpet and being told to change it to channel, “ One-five.” I’m thinking back to jamming to U2 in my dorm room and my wall made coming over and asking me, “Weren’t we two when this song came out?!” That’s the year they were named, “Band of the Year” by Rolling Stone!:

Realization

I came to a realization had about 3:30 this morning as I was trying to go to sleep. This realization that I came to caused my pillow case to get wet from my tears. I realized that this year, I can no longer have my Super Bowl food. Chewing has become that difficult for me. I can no longer celebrate my favorite holiday! (Super Bowl)

I cried about it a little bit today as well. I think this realization is just the tip of the iceberg of things I need to deal with and I feel that I am heading into a crossroad in the progression of my disease and I don’t know what to do. Last night, (or this morning), I flipped my pillow over and continued to try to get some sleep…

Oh, How Times Have Changed?!

Recently, my Mom and I were talking and she asked me when I started waking up at 4:30 in the morning to get ready for work. I thought about it and I told her that I’m pretty sure I started waking up early in 2009 when I bought my house. She kind of thought for a moment and marveled at the fact that I seriously used to do that every single weekday!

We were quiet for a moment after we both realized that I seriously would wake up at 4:30 in the morning! We were silent just for a minute and then we both started to laugh! I could not ever imagine waking up that early in the morning now! It’s crazy how much times have changed! I never thought it would be this much change but here we are.

My Mom called the office for the speech pathologist today. I gave her my medical record number and she did the talking. The woman does not have availability until October at about noon. My Mom explained how we need appointments later in the day. So my appointment with the speech pathologist is November 9 in order to get a decent time slot.

We will just need to make minor adjustments to our routine. I just well wash my hair the day before my appointment. That’s another thing that has changed! For my entire time working, I wash my hair every single morning. Actually, I will take that back. There was one day when my power was out for a week and me and Sean had to stay in a hotel.

It was before I got my generator and I remember sitting in the teachers lounge at lunch and talking to Mr. Cooper. He asked me how it was going with me not having an power. I looked at him and pointed to my head and told him, “THIS is dirty hair!“ I remember him laughing and telling me that it didn’t look bad. Well, I will go with that and go out in public with my hair not being washed! But I’ve already done that a few times at this point.

It is really CRAZY how timed have changed because I used to wash my hair every day and now I can’t even wash it myself!

Pierogi and Sour Cream?

I’ve really been thinking about this since my swallow test last Thursday. But before I say seriously write about this and all of my concerns regarding my chewing abilities, I first need to write about it using my inappropriate humor before I think you read about it seriously.

i’ve been drinking my breakfast and lunch for a while now but I am extremely concerned about my chewing abilities these days. Sean came over yesterday and brought pierogi from Sabina‘s. When he brought the food in, I explained to him that he should cut the pirogi in half and put that in the largest Pampered Chef bowl and bring me a fork.

He did just that and brought me milk to eat. We sat and ate and it takes me a lot longer to eat now! He brought me a ramekin of sour cream. He ate the food and we talked. I couldn’t believe how long it was taking me to eat potato pirogi! Chewing is seriously an issue for me now!

I asked Sean to bring me more sour cream as I was finished with that and still had pirogi left. He got it and said to me, “I can’t believe you are ruining a good pierogi with sour cream“ I started to laugh and explained to him that I am NOT Polish! It was his turn to laugh and he said yes he put more sour cream in the ramekin, “You Mexicans LOVE your sour cream!”

We both laughed for a while because he is Mexican to! When I was first introduced out to pierogi, It was served with sour cream and I really like it! Seriously though, the speech pathologist told me last Thursday that I should use lots of sauces and gravies when I eat to make what I am eating softer and easier to chew.

I really don’t like thinking about that because there’s so many foods that I no longer can enjoy but I would used to laugh at Sean and me having differences in the evening pierogi because I can eat that! I just think that from now on, my pierogi needs to be cut in fourths so it’s easier for me to chew. But for now, I will just laugh about pierogi and sour cream instead of thinking about my loss of ability to chew.

Another One

I finished this tube last night. I use it for as long as I can but when it’s completely used, I feel in enormous sense of accomplishment! It’s all about the simple pleasures! As per my appointment on Thursday, chewing is an issue more than swallowing. I need to take the victories where I can get them it seems! I like using up all this Chapstick though! There is something so silly about sing in as an accomplishment to use a complete tube but it makes me feel accomplished as well!

I was wondering which Chapstick I would use first and because the weather is so warm out still, I still have some Summer flavors left and I am going to use it until they’re gone, or until my fall and winter flavors come in stock at Target!

I i’m choosing to see this as an accomplishment and I find some satisfaction in that;

The Caveats

So, I had my appointment yesterday with a speech pathologist. I was extremely nervous because in the 20+ years that I have had MS, I have NEVER had an appointment with a speech pathologist. I tallied up the amount of doctors I have seen in my mind once and I think I have seen a total of 20 different doctors.

The nurse who came to get us was very kind and I found out that I am “Birthday twins” with her son who is 20 and the speech pathologist was a kind young woman and she will be the speech pathologist I see from now on in Dearborn. We will call on Monday to set up appointments for me.

She explained to me what the test was going to be like and I maneuvered in my chair to the proper place between the x-ray plates and facing a glass window. A doctor came in and sat at the desk that was on the other side of the window. I had brought my own mugs because holding cups is difficult for me and I did not want to spill things.

She told me that I would be drinking barium and that barium, “Is not the worst thing in the world you will taste but it is not good!” After all the tests we did, I believe her! I was so nervous about the test that as things started, she had me take my mask off and smile. She commented on my nice smile and all I could say was, “Thank you.” I couldn’t even make the standard joke of my Dad paying a lot of money for it!

Before the test started she had me open my mouth, say, “Ah,” stick my tongue out and push my tongue against the inside of my cheek against her finger. She also had me lick my lips in a circle first going one way and then the other way. That was difficult too!

After I drank the NOT good tasting barium, she spread it in pudding form on a graham cracker and had me chew that. When the testing was finished, she had my Mom come back into the room and she showed me the video of me swallowing. My Mom was extremely fascinated because it was kind of cool! Too bad that barium tasted gross!

So, in sum, we talked about getting a prescription for protein shakes because they are so expensive but she’s not the one to prescribe it but she agreed. She told me to stick with the soft foods that I have been eating because as I said before, proteins shakes for breakfast and for lunch, “And a sensible dinner.” (Slim fast commercial from the 80s). I got the test results back today on my chart and the test results are: “Normal.”

But, let me tell you that there is NOTHING that feels normal about me chewing food and swallowing these days. We will see how my appointments for the speech pathologist will work. The test also said that I have an, “Oral delay” but as she described to my Mom and me as we watched the x-ray video that she could tell it was, “Effortful.” I had never heard that one before but it’s kind of like the first time I heard the priest say, “Worthily” that I never thought was a word until I heard a different priest also saying that word!

Looks like EVEN more appointments are in my future!