Author: Jen Rios

12.28.22 Endurance OR Real-er

I re-posted my last four posts from my blog that I posted today. It is my anniversary! NOT a good anniversary but a milestone marker just the same.

I spoke with Sean a couple weeks ago about this new anniversary and he began singing Taylor Swift to me. I couldn’t even continue singing and I told him, “Not for this.”

That is a huge thing for me! I would play for him Abba every day for a month before he turn 17 when he got ready for school. But I think regarding me and my disease, I can’t joke or laugh or sing about this anymore.

All I know is that year 21 was extremely difficult!!! I often would tell people that, “Year 21 ain’t no joke!” because it has not been at all! It all started with pressure sores on both of my heels in April that lasted until November and then morphed into a trifecta of MORE difficulty! My speech, my vision, my eating. That I still need some time to work through!

I’m thinking back to the day when I try it out for some year-round swim club at Levagood Park. Mr. Bill was standing by my Mom and he told her that I could swim all day if he asked me! He told her that I had endurance!

This anniversary is hitting me a little harder and I hope to tap into my endurance that I apparently have because I’m pretty sure this year is going to get real-er.

Gearing up for a Milestone

It was a rough one for sure too I have a three for and then Christmas Eve and Christmas day was just one day in between. I am exhausted!!! But it’s the kind of exhausted that you just can’t shake.

I have had this exhausted feeling I would say for the past six years and it’s making me not remember not being so exhausted! But, I am gearing up for a milestone now.

On Wednesday, I will have had MS for 22 years. I don’t know how to feel about that. All I know is that year 21 wasn’t messing around ! I’m a little concerned about what year 22 will be but I have a couple of days to think about it…

“Not Getting Another”

I have had this memory in my head for a number of years but it seems fitting to speak about it right now.

I think this had to be my second or third year teaching and I was hitting the Atkins diet hard and I don’t drink coffee. It was the Monday after daylight savings and I was sitting at my desk talking to another teacher drinking my Cherry Coke Zero at about 7:00 in the morning.

The building manager was walking around to the classrooms to change the clock before school started on Monday. He was the type of guy to speak his mind no matter what the situation was or how it made the other person feel. So, he walked into my classroom and saw me drinking my pop and he said, “Drinking pop is going to give you arthritis!“

I was mid-drink when he said that and once I swallowed and put my pop down, I looked at him and said, “I already got one disease, not getting another.”

I figured I should write this before the holidays come but I thought about that back in October. I am 40 years old now and a ‘rule follower.’ I scheduled my very first mammogram in October because it was during Breast Cancer Awareness month! Seemed fitting to me!

I had my very first mammogram in October and WOW!!! I cried and was told I would get results in a couple of days. The results came back, “inconclusive.” It was necessary for me to schedule a repeat scan.

Because I am a ‘rule follower’ and a scheduler, I did that immediately but in my mind, I was thinking about that day when I told the building manager that I’m not getting another.

We figured out that my Mom needed to accompany me into the room to get my scan and I need to be in my manual wheelchair to get that done. Once we were finished with the scan, Aimee (The nurse running the machine) told us she was going to check with the doctor and come back to tell us what to do.

It was at that moment when my Mom realized that this was pretty serious and something I had been thinking about since October. We said a few prayers together and Amiee give us the all clear.

I didn’t realize until we were driving home that I was being dismissive because I didn’t want to think about it but I’m glad that I don’t need to right now. There’s so much other stuff going on right now in dealing with the first disease I have…

Karen’s Tears

Deb and Marra, I just watched the Diane Sawyer interview 20 years later with the Love Actually actors on Hulu and I really liked it! I liked the fact than Harry and Mia are just a flirtation. The director‘s wife cleared that up in 2015. It’s a good thing I did not see the movie until 2019!

I told my Mom a couple of days ago that Karen crying is so ABSOLUTELY heart wrenching!!! I told my Mom that Emma had to be thinking about something sad because those tears look so real! And then I saw this video:

Karen’s tears always make me stop in my tracks! Even though I have seen the movies so many times by now!

In the Middle

I am smack in the middle of my December ‘Go-time’ and my teeth are clean, my hair is cut, and my eyebrows are waxed. I just have one more appointment tomorrow and then I will crash! I just wanted to write a line to let you all know that in one week from today, I will have had been diagnosed with MS for 22 years!!! I honestly do not know how I feel about this…

3-Fer OR NOT Looking Forward to It!

This month, I have to leave my house three times. A three-fer. Ineed to get my teeth cleaned, my haircut, and a repeat scan. My Mom does not realize how nerve-racking this is because society is NOT handicapped accessible! I am just left to deal with that! Not looking forward to it!

My New Nerve Pain OR Joy!

Today is somewhat of a difficult MS-y day but I wanted to talk about new nerve pain that I am experiencing. I am 13 days away from 22 years so of course I would feel some new pains! I first felt this pain on Wednesday and my Mom witnessed me feeling the pain for the first time in real time!

I think she was coming out of putting a load of laundry on and she saw me put my right hand on my lip on my right side. I pressed them hard because my gums and my right front tooth I felt a sharp pain!

I thought it would be a one off experience but last night, (well, really early did this morning) The pain came back full force and with a vengeance! I figured out that if I pressed my tongue against the back of my teeth and press my fingers on my lips it helps so I did that for a while until I fell asleep. Now, I will just wait for that pain to come again. Joy!

Last Christmas

My Mom paid for the purchase of Last Christmas yesterday so of course we watched it! There are 15 George Michael songs in the soundtrack. I told my Mom about the ‘Freedom’ video and the supermodels so when it was over, I HAD TO show it to her:

She didn’t understand why he was burning the leather jacket and I told her that I vaguely remember some kind of label dispute with him and his record company. I showed her this video as well:

so this is a departure from my Christmas music but it is related because ‘last Christmas’ by Wham! is my favorite song! And George Michael is in that band!