Author: Jen Rios

Smirk

I’m feeling rather, “MS-y” today and it seems like those days are coming in learn more often now. Yesterday, it kind of made me laugh a little more then today but it got a smirk from me, none the less. Yesterday, I washed my hair, or rather, my Mom washed it.

I took off my medium Michigan sweatshirt to reveal a Michigan T-shirt that I had just recently bought After my hair was washed and blow dried, I sat there in another Michigan T-shirt that was clean. This does not happen all of the time but I did yesterday. I needed a sweatshirt because I cannot regulate my body temperature. My Mom walked over with two sweatshirts on hangers. One sweatshirt was the large size Michigan sweatshirt that I just took off and the other one is a maze Michigan sweatshirt that Sean got me a while back. I kind of laughed at it yesterday and chose the yellow one.

My Mom doesn’t really get that I will FOREVER be a Michigan fan (regardless if we win or not). I am conflicted about being a Lions fan that I have been such a big one since 2009 when Sean started playing football. But now my man is traded and many people are gone now too and I don’t know what to do! I’m grateful that I will ALWAYS be a Michigan fan!

#MyGirlL: A MUCH Bigger Deal Than I First Thought!!!

So yesterday, when Leia got home, she was groaning in pain that kind of broke my heart! My Mom went to get her pain medication. Anders when she got back, I realized this was a much bigger deal than I thought it was at first! Her pain medication has Tramadol?! This is a narcotic that my Mom had to sign for! Oh babe, that has to hurt! But I read the side effects last night:

I was on steroids when I was in the hospital before I was first diagnosed and I was an a lot more than she is but I’m bigger than 38.7 pound dog. I also read the side effects of the prednisone:

She is walking slow and doesn’t have the pounds and her step that she normally does. Last night, my Mom took her out to go potty and my Mom has already told me about her ritual after she poops. She barely diid the housekeeping of covering the poop as she scratches the ground. She also normally will twirl around in circles like six times. I think that’s adorable! When my mom came in last night, she told me that she didn’t twirl! We made the appointment for her phase 2 overnight stay that will take place in July. She is not supposed to go on walks for two months. Watching how slow she is now and still remembering how she sounded when she was groaning in pain makes it all make a little more sense

#MyGirlL: Infirmed

Well, Leia just got home. She did not bound m to the house like she normally does, she walked in and laid down. My Mom snapped some pictures:

She saw my Mom taking pictures and looked at the camera:

My Mom left to get her pain medication from Kroger after reading all the information for the steroids that she will be on for a weeks. She is not supposed to go for walks for the next two months. She is just going to go Out to go potty.

She is laying there and groaning. I have never heard heard her like this in the year that we have had her! It kind of breaks my heart!!!

#MyGirlL: “Phase 1”

Early this morning, I swear that I heard Leia’s tail thumping on the wall or the front door. I was so out of it that I just turned over and went back to sleep but when’s my Mom came home. She ate breakfast before she got me out of bed and told me that Leia was it going crazy when Sean came to pick her up this morning! So I did hear her tail something on something!

My Mom went with Sean to drop her off at the vet. Today begins “Phase 1” of her heartworm treatment. She is going to be given a sedative and then an injection to begin to kill the heart worms. She is staying at the vet till about 5 o’clock today so they can observe her.

My Mom took this picture of Leahia as they were getting ready to leave:


It shocked me how grown-up she looks! I updated her profile picture when I ordered food from Chewy today. So now, my Mom left to pick her up but before she does that, she needs to go to the post office to mail a package for me because it almost is my best friend’s birthday!

It was super weird all day to NOT have Leia here and I can’t help but think of this movie as my Mom is going to pick her up. I would watch this movie but it’s more of a fall or winter movie for me to watch. I always thought Renee Zelleweger singing it was funny! I’m not drunk but I am by myself. It feels weird!!!!

Cicadas

If you have known me, you know that I am terrified of cicadas! This terror comes from my brothers throwing their empty shells on my head every single summer when I was growing up! I heard on the news that there was an increased number of them this year and I was grateful that I have not heard them does far!

well, the person who holds the #ChatMSs posted this a while back:

I responded with this GIF: it was


And then he tweeted a video of them shedding their skin;

And the conversation continued with more tweets about them where I responded with this:

I was talking to my Mom about my fear of cicadas because I was terrorized with them every summer when I was growing up! She couldn’t believe what I was saying! She FaceTimed my brother Dave a while later and she asked him about dumping hundreds of them on my head and he just started to laugh and said, ”Yeah we did!” My Mom shook her head and couldn’t believe that I didn’t tell on them. I’m not stupid! I wasn’t going to do that!

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.”