Author: Jen Rios

Falling Apart

Sleep hasn’t come easy for me for years and I am not a morning person so it only makes sense that I am a night owl. I’m lucky that my best friend is also in a night owl as well and we text often during the night. She and I have had similar schedules for a really long time!

For me, at this point, it seems that having MS for over 20 years now, it’s taking it’s toll on me. It’s difficult to get ahead of the pain now! I was texting with another friend last night and he sent me this:

I responded with:

I fell asleep after texting this but I woke up this morning thinking about it. In essence, I AM falling apart and that scares me. As scared as I am of admitting that I am falling apart, I can’t get this song out of my head! Maroon 5 songs were in my June faves this month in my, “Tunes” tab:

I like this song and remember them performing in when I saw them in concert at DTE energy music theater. This song is not about at at all but I can make it so because these lyrics stick out to me:

As the pain worsens and I can’t get ahead of it.

The speech therapist called me today and left a message for me to call them back. My brother stopped by and hugged me (because we can because we are both vaccinated) and made sure to make fun of my glasses that I seem to be wearing a lot more often now!

This disease progression is scaring me but it’s going to come for me eventually. I also think of this lyric when I think about all of the deterioration of my abilities:

It seems that I have been waiting for 20 years and eventually, I always end up falling. “Falling” in this instance is losing my ability to complete simple tasks.

“This Hurts.”

I can clearly remember telling my Mom a couple of weeks ago as I laid on my stomach on my bed just as I was getting into bed and she tended to my pressure sores because, NEWSFLASH: After 15 years of being in a wheelchair full-time, those things tend to happen. I know that I am beyond blessed to have my Mom to take care of these things for me and the years, we have found that this works the best for me!:

But back to a couple of weeks ago, As I laid there flat on my stomach, and it was a culmination of not being able to find a comfortable position at all in the day and still not being comfortable laying flat in my bed, with my head on my pillow, I turned it to the right and told her, “This hurts.” I didn’t yell it but rather just said it matter-of-factly because I am resigned to understand this now, 20 years in, this hurts. I buried my face in my pillow and shed a few tears.

My Mom responded with a quiet, “I know.” I learned on Friday that my motorized chair was ordered in April 2018. I get a new chair every five years and now, I understand why that is. I constantly move my chair to recline because three years of sitting in it has taken it’s toll on the cushion. I got my haircut on Friday and because my salon is quite small, I transferred to my manual custom chair to get my haircut and eyebrows waxed.

My Mom asked how I was doing and I told her that, “My knee is killing me (even with my Tens unit on) but the seat is really comfortable!” I haven’t used my manual chair much since getting my motorized chair and during the pandemic, I was not getting my hair cut so it got used even less. I had my Mom take this picture because I think that the belt needs to be tightened. In fact, I KNOW this because the pelvis stabilizer is supposed to be snug.

It’s a nice feeling to and learn and notice that I have lost weight but it is really NOT safe to not have a snug pelvis stabilizer (seatbelt). In the early days of being a wheelchair user, I used to have my tech remove the belts but now, with the progression of my disease, I am not comfortable moving my chair AT ALL without it securely fastened!

“I’m Nervous.”

Yesterday was my annual appointment with my neurologist. From the second I opened my eyes, I felt tense. My Mom came into my room to help me out of bed and asked what was wrong. I told her that, “I’m nervous!” She asked me as she grabbed my ankles, “What are you nervous about? Are you afraid they are going to tell you that you have MS?!” I had to laugh at that! There was really no reason for me to be be nervous.

My Mom has described my neurologist as, “Kind.” She really is! It’s not that my other two neurologists were not but it’s comforting that she IS. Historically, I have only gone to the neurologist once a year because my insurance counted those visits as specialty visits so they cost more. But now that I don’t work, I am on Medicare and Medicaid because I am disabled. Maybe I can see her more to monitor the progress of my disease.

She filled all of my necessary prescriptions and my prescriptions for durable medical supplies that I need at this point. Overall, it was a really good visit! She asked me if I have any new symptoms and I spoke of my swallowing difficulty and my speech problems at times. She typed a lot of things into her computer and told me that I will receive calls to schedule a, “Swallowing test” and a consultation with a speech therapist. She told me that based on those results, they may suggest diet change and can possibly pay for my protein shakes because that is what I drink for both breakfast and lunch. She also told me that I will receive a call to schedule an MRI. At the end of the appointment, Suzanne came in. She has been my MS nurse for a very long time! She will be retiring next year.

After the appointment, we stopped and got Swarmmas because they are delicious and I got a mini thin mints blizzard because that is also delicious! After that little bit of excitement, I had to get home. This heat is killing me!!! My blood pressure was a little elevated because I normally am a 90/50 but it still was within a normal range. I was the last appointment in the neurology clinic and was the only one there. Because everything is so different with checkpoints and stuff. Maybe that was the cause of the elevation and my blood pressure. But let’s not forget that this heat is KILLING me!!!

A Couple of Things

I awakened a little bit early this morning and I need to address a couple of things: I saw a post on Facebook that showed the Festival of Redheads that takes place in Ireland!!! I loved it and shared it and commented:

I love seeing that because I have always wanted red hair for my entire life! Check out these pictures!:


The fact that this was in Ireland just made it even better for me! Imagine how that sounds?! All of those Irish accents!!

But then, I was texted that to aunt Uncle which is also something extremely dear to me! And reminded me of why I will NEVER get on a commercial plane again! I started reading this article and began to cry and I continued crying for a while after I finished reading it!:

https://apple.news/AgM01m2FjQvOMy9qv3jPtFw

I couldn’t copy the picture but I heard you all to click on the link and read about the treatment of wheelchair users! I also cried because I will never be able to witness the Festival of Redheads! Anyone with access to a private jet, if I can borrow it to go to Ireland for in the Festival of Redheads (even though I do NOT have red hair) that would be great!

“Get to Class!”

I knew this picture wasn’t existence and I vaguely remember taking it. You can see my bow biters that I’m pretty sure I rocked at least two years in high school:

And yes, I was in the girls bathroom! Taking pictures?! My students didn’t take pictures but I discouuraged them from hanging out in the bathroom because that is, “Gross!” I used to tell them that they need to stop hanging out in the bathroom because, “People poop in there!” I said that as a teacher who was trying to teach a certain curriculum. I am glad I didn’t know where this picture was when I was teaching, because look at me, doing exactly what they used to do! “Geez Jen, Get to class!”

*But back then, I was, “Jenny.”

Reconnaissance OR 6 for 6

I don’t know how many years ago I added my Mom onto my Netflix account but she has access. In the beginning, she was watching random movies where she liked the actor and then she would stop watching it once she didn’t like it anymore. I told her that she can’t choose a movie just because of the actor! I have agreed to watch movies with her and up not being very good! So, now, she runs some reconnaissance for me. She will watch the movie first on her phone and let me know if it’s good or not.

She knows that I can’t control my emotions anymore and I don’t like sad movies. That’s why I watch Hallmark movies all the time! So I think it was a couple of weeks ago when she saw one and she told me that she really liked a movie was new to Netflix and wanted to watch it with me.

I have watched, zBlue Miracle six times now and I am 6 for 6 in terms of crying:

I’m not going to tell you anything about why I cried but it was good tears. Worth the watch! it took me a few times to get over the fact that Dennis Quaid is so old! That and Omar reminds me of my brother, Dave!

She just finished watching a different movie so may have to change the movie I watch this evening.

Taking Things For Granted

I saw this video in my YouTube feed because Big Brother KNEE that my soul soul needed this! I had never seen this version of the video before but I have since been trying three or four times to put the video here on my blog and it’s not allowing me. This is what it says;

So, I put the official music video here see you can hear the song that my soul needed to hear! A song that brings back vivid memories of living in my dorm room on the fifth floor of Harvey Hall and driving my car down E. Pine Dr. to get off campus. This song, for me, chronicles at a time when I was carefree and didn’t know I was taking things for granted. You know, things like walking and driving.

This song takes place long before the Reality and pain would rtt in! I left Western’s campus for the final time a few weeks pregnant and I didn’t even know it yet.

So Much More…

I’ve been thinking about this a lot lately. I’m reminded of a conversation I recently had with my fully vaccinated son. I don’t remember what we were talking about but he told me that he remembers me loading up my manual wheelchair into the trunk of my car and using the car to steady myself to get to the driver’s seat. I remember doing that as well! He kind of had a look on his face that I understood what it meant. It was a look that remembered abilities I used to have and a look that is somewhat sad because I no longer have them.

I told him that Dr. Elias’s job has got to be depressing! He told me that he doesn’t know that doctor and I said that he probably wouldn’t. Dr. Elias was my neurologist for 15 years. He has since retired and I am going to see my new neurologist who works in the same clinic. He recommended her to me on and I am seeing her this Friday.

I told him that Dr. Elias used to have me walk down the hall and he would watch my gait. He also would have me lay on the exam table and tell me to take my shoes off. He would have me take my left heel and scrape it down my right shin and the same for my right heel. I only remember doing this three or four appointments before he had me stop trying.

He had me stop trying because I was unable to keep my heel on the opposite shin and move it. That was just evidence of my lack of muscle control in my legs. I explained this process to Sean by using my arms as an example. I put them out in front of me and used the heel of one hand to scrape the opposite forearm.

I see that now, as a wheelchair user, I posted a couple pictures on Facebook that were touching for me:


throwing my manual wheelchair in my trunk after shopping was one thing but I will never have muscles like that guy! I do not have that strength at all or even close! I don’t have the possibility of having that kind of strength now either!

MS has ravaged through my body for the past 20 years and it still ravages through my body as I write this post. Even though I cannot partake in the accessibility for a beach, I still want accessibility for wheelchair users who can use it! It’s, just for me, it’s so much more…

“Bum, Bum, Bum!”

I have recently been thinking about a conversation I had with my cousinT, Shannon, and some other people. We were talking about playing instruments and somehow she mentioned that bass players are really cool she kind of pantomimed playing the bass and said that they just are chill and she picked her make-believe bass saying that they are just like, “Bum, Bum, Bum!” I remember that that statement made me laugh but as I watch live U2 music now, that’s totally true! Adam Clayton is the coolest!!! Here are some pictures to prove it:






He is so cool but I can’t forget how much I LOVE BONO!!!:

i’ve got enough love for you too, Adam!!!

U2 – bass player Adam Clayton performing live on the Vertigo Tour at Twickenham Stadium Twickenham UK – 18 Jun 2005 – Photo by: George Chin