Author: Jen Rios

“Worse-er”

So, I had a Speech Pathology appointment last Wednesday and we worked on tongue twisters. She gave me homework to find difficult tongue twisters and dictate them in a text to her. I found 13 of them and they were really good! I shared one with her on Wednesday after my appointment.

But then the snow came and my Mom made Leia’s track. I was happy to see how happy that makes my Mom but I told her that all of that precipitation that is outside in the form of snow is also inside my body! And that hurts terribly!!!

So, Thursday was kind of a rough day but I was happy to see my Mom so happy. I thought I would just have to re-calibrate myself for the winter to get used to how my body feels with snow on the ground. I went to sleep on Thursday night with the hope that Friday would be better!

My hopes were dashed the moment I opened my eyes. I thought I was going to re-calibrate and feel better but that was definitely NOT the case! Friday, I spent the day groaning because it hurt so badly!!! I couldn’t believe that I spent the entire day in pain as I was trying to drift off to sleep. I thought, it’s, “Worse-er,” and that thought made me laugh!

You know what I was thinking!!!

I have shared that memory of my first night at WMU so many times on my blog and that’s what I thought of last night as I was beginning to drift off to sleep in the early hours of this morning. I saw myself driving (back when I could still drive) down E. Pond Dr. on my way to Wendy’s to get something to eat (back when I could eat normal food)

I was trying to find a radio station but I did not know them in Kalamazoo so I hit the shuffle button on my radio and started to drive. It was just at the bend of the road with the Inter-mural courts on my right when I heard the opening bars of this song and Axl asking me if I knew where I was?:

I’m Surviving It!… Just Barely

I have been thinking about writing this blog post for a couple of days now. I just spoke with my Speech Pathologist after speaking with my nutritionist two weeks ago.

I will say that year 22 of having MS ain’t no joke!!!

I am completely startled and taken aback at how quickly things are coming at me! It has always been a slow slog of losing abilities but this trifecta that I am experiencing right now (vision, speech, nutrition) is a bit much! But I am surviving it… just barely.

I searched through the archives of my blog and this is the reason that I write this blog! I re-posted posts from two years ago and last year. It was all talking about my lack of hand strength. I have been thinking about this since I told Sean the story about me intertwining three full bottles of beer in my right hand and three chilled bear mugs in my left hand when I was a surfer. He marveled at the fact that I could do it but I told him that I can’t do it anymore!

That conversation had me thinking about my apple tasting lesson when I taught English. I used to bring the apples in, and cut them on my demonstration table at the front of my classroom and I had my team teacher pass around Apple slices for my students to taste and to describe using as many adjectives as they could!

I couldn’t do that now if I tried! I don’t even hold utensils anymore! A spoon and that’s it. But with this loss of hand strength, I squeeze my extra firm therapy putty for an entire rosary every day. 17 minutes:

There are multiple exercises you can do with the putty but I just bought it and so it is quite firm right now so I will have to wait a little while. But since I have two of them, I started this one on January 18 and on June 18, I will start the second putty.

It’s kind of crazy how every single aspect of my life is on a schedule… I think it’s even a bit too much for my scheduling self!

In Preparation

I have not watched football at all! This fact is quite startling for me considering that I was such a HUGE football fan! I would watch hours of pregame every single year and I never had a horse in the race! That is until last year! I have been a diehard Matthew Stafford fan since 2009 when he came to Detroit!

That being said, I’m grateful that he reached the mountaintop last year so I can get away with not being so invested in football this year as my disease is progressing.

Rihanna is doing the halftime show and I watched Tom Holland‘s lip-synch battle in preparation for the show! I think I will re-watch last year‘s Super Bowl (You KNOW that I have that recorded! ) to see if I can handle the fast movement…

*Gasp*

I think it was close to 2 o’clock in the morning this morning when I saw this picture in my phone. I was clearing out text messages and I saw this one from my cousin from Texas and when I opened it up, I had to *Gasp*!!!

This is my great aunt, Olga and great uncle, Rey. She was my grandpa‘s sister and this was my grandma‘s funeral. Both of them are passed now which makes this picture is in sweeter!

“Paste from a Tube”

I’m still not okay with what I am eating now. But this is the way it will be from here on out. I haven’t watched any TV yet because on Wednesday I will talk to my Speech Pathologist so maybe I will get a little more put into perspective regarding all of this disease progression.

I think of that movie Zathura when Dex Shepard was explaining to his younger self that he ate ‘paste from a tube for the past 15 years.’ That’s pretty much what I am eating now but I am not complaining! I think the new nutrition shake is give me a little bit more energy! This is so much to think about!!!:

Sweeter

Today, when I drank my new nutrition shake for breakfast, to my surprise, it was a little bit sweeter. So much so that I am confident that I will be able to drink this for the next 34 days without a problem.

Since I met with my nutritionist on the 11th of this month, aside from watching High School Musical 3 (because we had to finish the trilogy!) I have just been listening to my Gavin DeGraw playlist because my new nutrition needs are a lot to deal with! Listening to Gavin DeGraw reminds me of our apartments and when I was really starting to grow up and I had a three-year-old child with me and I was a little more able-bodied back then. I was still driving:

Of course, I thought (and have heard this one a number of times) of this song:

I’m Okay with it!

The new nutrition shakes arrived yesterday to my house and my Mom put them in the fridge to get cold. When I awoke today, I had one with my vitamins. I must say that I am NOT a fan! But I want to follow up quickly by saying that I am okay with it!

I am understanding that at this point for me, nutrition is at a caloric level. I need the calories to have the energy and after drinking the nutrition shake today and getting our routine done, I am tired but I am NOT exhausted!

That’s the reason why I am okay with the nutrition shake NOT tasting good. Just because I am not a fan of it does NOT mean that I will NOT drink it because I definitely will be doing that for the next 35 days! I will order the vanilla shakes from Target when I get paid next month and those shakes will be 5% off from what I paid this month. So I guess that it is a ‘win-win’?!

A Necessary Evil

Parts of both of my Amazon and Target orders arrived today. My new nutrition shakes are chilling in the refrigerator right now for consumption tomorrow with my vitamins.

Today, I had an epiphany, a realization that floored me! I have always said in all of my MS support groups to tell newly diagnosed people that carbs and sugar are not your friends!!! Because they definitely are not and have not been for me!

But now, 22 years in to this beast, I am slowly discovering that both carbs and sugar are a necessary evil for me to exist. In talking with my nutritionist, it’s necessary for me to have more calories now. It feels so strange!!!

I am grateful that my new shakes arrived today and they’re in the fridge for me to try one tomorrow. A friend told me that they think it will taste a lot better and I agreed with them because they have 29 carbs! I have to change my way of thinking about all of this. Both carbs and sugar are going to be necessary evils for my existence now…