Author: Jen Rios

Remarkable

So, I had my neural ophthalmologist appointment yesterday that really wiped me out! The appointment took four hours! But, it wasn’t four hours of waiting around for the doctor to come in; it was four hours of 1 million different eye tests in two different rooms!

I’ve had a long relationship with Dr. Skarf but it has it been a long distance relationship meaning that I saw him the first time when I was pregnant (19 years ago) and then I saw him about 10 years after that. And then I saw him yesterday. So it has been a long time between visits!

He told me that he couldn’t recognize me with my mask on and I had a winter hat on because I get cold easily but he remembered my previous appointments. At least, he has the results of my previous tests in the system.

He had a student with him who did most of the testing but listening to them talk to each other about the results was like they were speaking a completely different language!

At the end of the appointment, Dr. Skarf told me that it was remarkable that my eyes have not changed that much. He told me that MS is never going to get better but in the last 10 years, my vision hasn’t gotten much worse. I am very grateful that it has not gotten much worse from a clinical standpoint. I feel it’s gotten worse but he knows exactly how bad it can get and mine is not that bad yet.

He also told me that if I wait another 10 years to see him again, he will not be here (at the office). By now, Dr. Skarf has to be close to 80 years old. The intake tech, named Jamie, told me that I should see the neural ophthalmologist every two years.

Neural Ophthalmologist

So, I had an appointment with the neural ophthalmologist today. First appointment in about 10 years. My appointment was at 1:30 in the afternoon and then just got home at about 7 pm. I will write more about it, maybe tomorrow, but my eyes are still super dilated and I am tired!

You know that I had to cut off most of my overgrown eyebrow in this picture…

ALMOST Forgotten Tune #96

I have always used my music in everything in my life and even as Sean grew up. Now that the time has passed, I can’t believe I didn’t play this song for him just before he graduated. Maybe it’s because everything about his graduation of 2020 was awful and I couldn’t even attend. I remember arguing with people in my graduating class 20 years ago to see if this could be our graduation song but it’s totally inappropriate for a Catholic school:

Big Brother KNOWS my Soul…

Last night just before midnight, I shared this video on Facebook:

I didn’t see the 360° Tour because I was already a homeowner at that point and could not in good conscience pay $500 for two tickets to go see it. I would have taken my brother because I don’t share U2 with anyone!

Unfortunately, there are a couple guys who I think of when I hear certain songs but I try my best to put that out of my mind because they are my band!!! Even Facebook quizzes know that:

I really dig taking these Facebook quizzes and they let me know that big brother really knows me or more importantly, in this case, my soul! 😂😂😂

But, I watched this video because I never got to see the 360° tour and this song reminds me of so many things back when I lived in the land of the able-bodied.

This song reminds me of winter time and driving to my job while I was in college. I worked at DFCU financial credit Union. This song reminds me of Matt Davis, “My Matty.” He hired in after me and I was listening to the Best of 1990 to 2000 in my car at that time.

He told me that his older sister liked them and he specifically referenced this song. It’s really cool that I just put my Apple Music playlist on shuffle now and I can hear and then whenever I want to! This song specifically reminds me of working in the drive-through with Matty back when I was “Able.”


“Lasting Memories”

I am a very sentimental person and a lot of things I do go along with that fact! I do silly things for my own amusement but I think somewhere in there, I have given my son some lasting memories.

I just thought about this today in passing. I found out that it was December 15, 2020 that Sean texted me this picture from work. He is a porter and detailer at a local car dealership:

He was driving some car and this song started to play. I know this is a, “Lasting memory” because he is 19 years old now. 30 days before he was turning 17 and I was still recovering from knee surgery, I would play this song on my phone as I laid in bed when I heard him getting out of the shower and as he got ready for school.

I really dig this song and I didn’t mind playing it every day but I played it for my son who was going to be 17. When he sent me this picture, I laughed and later that day, I told him that when he has a 17-year-old, he knows what to do! It was his turn to laugh and he kind of shook his head and agreed.

I made a memory really just for my own amusement but the fact that my son sent this picture to me when he heard the song at work and he is 19 makes me feel like I may have made a few other, Lasting memories.”

#MS(REALLY)sucks!!!

So, most of my fellow MS warriors live on the opposite side of the clock (like me). We are night owls and have difficulty waking up in the morning. I saw a tweet from a mutually followed MS warrior and wanted to write about it before today but I’ve needed some time for it to sink in:

I 100% agree with this! After I went back to copy the meme, I searched through her feed a little bit and saw this one:

I also 100% agree with this one as well and it answers a few more of my questions. It’s the reason that I text people instead of talking on the phone with them, can no longer sing along with the radio, and no longer have my, “Teacher voice” just to name a few. Yep, #MS(REALLY)sucks!!!

“Little Red Pants”

I actually was not familiar with this song but Big Brother knew that my soul needed it! These Facebook quizzes are definitely on point sometimes:

I didn’t recognize this video when it popped up in my YouTube feed but I watched it and I REALLY dug Bono’s little red pants!

ALMOST Forgotten Tune #95

I think that this tune may be the last one that I can pull out of my 3eB rabbit hole except for one other song that is rolling around in my mind. But this one is the last one from the Collection Playlist:

And my favorite verse, I have loved this flow since I first heard it! I can’t sing along with it anymore (it’s too fast for me now) but I can in my head:

This, “Can’t” Hurts a Little Bit More

Having had MS for just over 20 years now, I am no stranger to, “Can’t”s. Over the past two decades, I have seen many abilities diminish or be completely gone. A lot of these are very slow progressing so I’ve had time to deal with and process them. I’ve taken these, “Can’t”s in stride because there is no other way to handle it.

It has been almost three years since I taught in the classroom. I’ve had almost three years to process the fact that I am no longer teaching in the classroom but it is definitely NOT easy. I miss my ability to teach every day.

When I wake up in the morning, I’ll check my phone as I call my Mom to tell her that I am awake so she can help me to get out of bed. I will check any texts I have missed throughout the night and my emails as well. Checking my email this morning startled me. I read this email as soon as I opened my eyes:

The email told me that my teaching certificate will expire in 177 days. I have been a certified teacher since the spring of 2005.

And in 177 days, I will no longer be a certified teacher. Reading this email made me catch my breath and it was a little startling.

I haven’t been in the classroom for almost 3 years but this kind of hurt! I am no longer in the classroom because MS has decided to take that ability away from me as well. I always thought I would retire from teaching about 30 years from now. Instead, I was forced to stop teaching almost 3 years ago. My certificate expires on July 1, 2021

There is no point to renewing my certificate because I am no longer able to teach. This morning, I was startled and I will say that this, “Can’t” hurts a little bit more because if I could, I still would.

#MyGirlL: “Mother, May I?”

It has been established since right after we got Leia that she is not allowed in my bedroom. That was established very shortly after we got her and after two or three accidents that she had IN MY ROOM as she was getting used to the house and us. I do NOT forget so she’s NOT allowed in my room!

So, last night, (actually pretty early this morning) as my Mom helped to get me into bed, Leia stood in my doorway. It’s pretty involved transferring me out of my wheelchair given that my Mom and I are the same height. We have figured out how to do this and it just takes a few steps.

My Mom told Leia to, “Sit” as she was getting me out of my wheelchair. As we were making the necessary adjustments, we heard the click of Leia’s feet on my hardwood floor and when my Mom turned her head, she was just in time to see Leia sit upright.

What we have noticed, is that when Leia is told to, “Sit” and she really doesn’t want to, she inches her butt forward. The clicking was her front paws.

My Mom and I stopped to look at Leia and laughed because she had inched forward about a foot into my room. We laughed when we saw her and My Mon said that Leia likes to play, “Mother, May I?” I laughed as my Mom finished getting me into bed and she took Leia out of my room.