Author: Jen Rios

Shared Vivid Memories

Last evening, I was on my phone puzzlin’ and listening to music as my Mom laid down. I listen to Apple Music as I puzzle and it was on shuffle but when I heard this song I laughed out loud and clearly remembered Sean and I laughing in the car at what the DJ said as we drove to Barwis:


Sean texted me right back and I laughed at his responses but he called me later and we talked about it and he remembers that it was on the pulse and the DJ said that a tiny, 13 week old baby does not know a world without Nate and Pink being #1”

Sean was 11 and we were going to Barwis and it was the summertime and that was the hit song that summer. I love that we both remember that so clearly!

“Yeah.”

Last night, as my Mom was covering me put my comforter as I was going to sleep. She told me some things that she had never told me before. Or, if she did, she didn’t give me as much detail as she did last night. So, in other words, last night, my Mom told me that she and my Dad talked about how my disease would play out.

here is the thing, the day I was diagnosed, they gave me an arm full of books to read about my diagnosis. I threw them in the backseat and went to go see my boyfriend. I didn’t think anything more about them except when I brought them into the house. But what I did not know was that my Dad read the books. I stopped reading about MS very early on because it’s all depressing but my Dad read it all and asked my Mom if she wanted to hear about it. She declined but she told me last night the extent of their conversation.

So, as she was covering me to go to sleep, she just told me what the conversation was. My Dad was a man of few words and the word he used in their conversation was, “Yeah.” He told my Mom that this diagnosis was bad and she asked him if it will be expensive and he replied, “Yeah.” And my Mom was kind of what’s startled and said, “We have to help her!?!” And my Dad said in response, “Yeah.”

With a blog post title such as it is, you would think I would have an Usher video clip because I have posted that song many times on my blog thus far. That song always reminds me a Barwis. But, for this post, I feel it deserves so much more reverence because i’m uncertain about where I need to go in terms of getting a bed more suitable for people with MS. And for having had MS for 21+ years, I think this development has been the MOST difficult to deal with at this point. It’s not that I haven’t dealt with TONS of things that are difficult, DAILY, but this one is just a little bit harder! I’m glad that my Dad knew that this day was coming 16 years ago, before he died, and he spoke about it with my Mom.

I could hear my Dad saying, ‘yeah’ as my Mom told me about their conversation and it kind of comforted me and say what is drifting off to sleep. It looks like the time is come for me now, Daddy.

[I am hearing him say ‘yeah’ as I write this]

A GREAT Laugh!!! 😂😂😂

I meant to write this in my previous post but it was a little long so I decided to end it. Anyway, when I put pictures or YouTube videos into a blog post, I need to do that using my phone and then I wait a while and then I can pull it up on my iPad so then I can speak the text and be able to enlarge it so I can see the words whereas with my phone, I can’t. There have been many times over the years where I have lost complete blog posts because of my disease progression and switching from my phone to my iPadSo, I decided to just post that blog post and write another one like I am doing now. so, Sean texted me regarding this song and how it was trending on TikTok.

He told me that Tik Tok will play five seconds of a song on repeat while the video plays. I told him that they need to make a TickTock video with this Gavin Degraw song on it because I love that line!:


Sean started to laugh and told me that he will email China with his TikTok requests. And then we both started to laugh about the absurdity of what I just said! We left for a long time and I like that it has always been that way with us. He has always made me laugh! But now I have to put both songs that were referenced in this blog post, in this blog post:

This short part of the song would be great for a TikTok video but I’m not sure what you would do in it…

Both of these songs are sprinkled all over this blog and I’m sure it’s not hard to understand what I was thinking of when I listen to these songs over and over again but I like that Sean and I can and had a GREAT laugh about it now in retrospect!

My Retrospective Apology

Sean texted me last night to tell me that a song that I used to play all of the time is trending on TikTok. I listened to this song and he was completely correct that I used to, “Bump it.” And it really got me thinking about the fact that he remembers me playing that all of the time. I texted him back and told him that I’m sorry for him having a front row seat to all of my dramatic heart breaks!:

I can pinpoint the exact season this song came out! We were still living in our second apartment and it was only going to be my third year teaching. It was the summer that we went to Florida to seek medical treatment for me. I remember hearing this song while sitting in the car waiting for Sean and my Mom to come out of wherever they were at in Florida.

This song was definitely before my barrage of heart wrenching Sara Bareilles songs and even before Carly Rae Jepsen but those are songs for a different blog post that I probably will never write! Sean called me today and I gave him my retrospective apology for having him be witness to all of my heart break! It’s only now that he’s older that he realizes that is what it was. I never cried in front of him or anything, the only thing I did was eat lots of Tim Bits and he didn’t mind that so much!

“Down for the Count”

Yesterday, I did NOT feel well at all! It was SO MUCH MORE than an, ”MS-y” day and I wondered how long that would last. Because it was the first of the month, I just posted my Sara Bareilles song which is my ‘go-to’ song these days for my April 2022 faves.

A bunch of things have been going on as of late and I’m not really sure how to process it all. My Mom got Leia ready to go for a walk and U laid back almost flat in my wheelchair (like I do when I am sleeping) and just needed to close my eyes for a little while. I put Gavin Degraw on my Apple Music really softly because this has happened to me before but it’s happening now that I am EXTREMELY sensitive to sound! I asked my Mom to turn the lights off in the living room and she covered me with my Rams blanket and I was down for the count!

She had been gone only a few minutes before this song came on and a screenshot my phone to remember this song that I listened to as I drifted off to sleep and it stayed that way until my Mom and Leia got back:

This song is a ‘first apartment jam’ and these words were my favorite back then. That makes me shake my head now!:

But that is something I can blog about because I felt awful yesterday! I slept well enough last night but my ankles hurt. Both of them and that’s what woke me up this morning. I really have to critically think about my sleeping arrangement!

April 2022 Faves

I never thought about music NOT being in the forefront of my mind! I am having difficulty seeing past the pain and discomfort that my disease has caused at this point. I think my sleeping arrangements bother me more than I know but I do miss the girl that I once was…

Witnessing Progress in Real-time

I have been sitting in my chair as I always do every single day but after the needed adjustments, I am baffled by witnessing progress in real time because the last chair I got less than four years ago, It had a different pelvis stabilizer. it’s become normal for me to refer to my seatbelt as that because that is the proper name for it.

I would say probably a little more than a year ago, I think that my Mom was backing my chair out of the bathroom before we began our routine and the pelvis stabilizer got caught up in the wheels. It burned parts of the strap so it really looked ghetto! In Addition to that, another time, the actual clasp of the seatbelt was run over and it broke. Both parts were able to fasten together still so my Mom would tie the end of the seatbelt to the clasp so it worked.

I told my Mom to mention that to the technician this morning. Rick worked on my chair today (I don’t know any of the technicians because I have never been there when my Mom has taken my chair. I think there are a whole lot of them there though, kind of like in the movie The Upside) and he replaced one side of the pelvis stabilizer. No longer is it like a seatbelt in a car. it’s better than the million dollar idea I had for a better pelvis stabilizer. I think it’s crazy that I am witnessing progress in real time and even seeing changes between chairs! Imagine the progress that will be made by the time I get a new chair next July!:

My Mom clasped me in and I just moved The track until it was flat.

Overwhelmed and Silent Tears

So, my Mom brought my power chair back to my house and she took Leia out before transferring me from my manual chair to my power chair. Leia tried to get in on the hug that my Mom and I were sharing to transfer me and my Mom got a little irritated and I reminded her that she loves us and wants to get on and that hug even though it’s just a transfer!

As soon as I got in my power chair and was adjusted to be sitting in it fully. I Smiled to myself. It was small and my mom asked how it was and I slowly nodded once and said with my eyes closing, “I can feel it!” And as I sat there further, tears started streaming down my face. That seems to be happening to me a lot now! I don’t fight them anymore and they just fall. It’s good that I don’t wear make up because otherwise, I would have streaks on my face.

My Mom left to do some errands before she takes the van back to Creative Mobility. I am sitting here in my power chair and a leg rest that we’re adjusted feel really good and I can’t believe that I dealt with them NOT feeling good for so long!

So, I’m sitting here listening to music and overwhelmed and silent tears are constantly streaming down my face! Not that I’m bragging or anything but there is a huge difference between a power chair cushion and a manual chair cushion. If we are talking price, it’s a difference of $40,000. My body can feel that difference now as I am so more comfortable And I feel overwhelmed and the tears just silently stream down my face.

Complicated

So, I give my sleep last night a ‘B.’ I did have to move my chair probably four or five a.m. because my ankles were hurting. My Mom got me up earlier because she took my power chair to NSM again.

My chair, even though STILL nameless, will be four in July. Four was my favorite age when Sean was growing up because I could understand everything he was saying and he asked crazy questions because he did not know! I remember laughing about it all the time!

Last night, I texted my Mom a list of all the things wrong with my chair to tell the technician once she got to NSM. I was a bit concerned because I was told that I get a new chair every five years but since my chair is only four, I would have to pay for any things that I needed. I thought!

I have been on disability for five years and I am on both Medicaid and Medicare because I am physically disabled. It has DEFINITELY been complicated to say the least! I get a spend down each year which means that I need to pay out-of-pocket for things until I meet a certain amount that I will pay for before they cover things. Last year, I met my spend down on December 28.

So I was concerned about how much it was going to cost but it’s gotten to a point where I need to get things out of necessity not because I want them. As I was waiting for my Mom to call me back about what was going on with my chair, I watched GMFB clips on Twitter because I can’t wake up anymore to watch it live and to Tweet at them which makes me sad.

I saw this one and I’m not even sure who the prospect is but his answer made me laugh out loud because Sean is ALSO an early 2000‘s kid and we did jam to this song often together in my car!!! 😂😂😂

So, my Mom called me back and we had seven different things they needed to adjust/order. They adjusted everything and ordered the cushions that I needed replaced. My Mom gave me the grand total that we owed today.

$0.00. I told you that it was complicated!

My 9th Night OR A Readjustment

Last night was my 9th night sleeping in my wheelchair. I was concerned about my low grade point average of the past eight days but I thought about how it has played out and I made a readjustment. I did not raise my legs as high nor did they lower my head as low as I did before. So, I am happy to say that my grade for last night is an A-!!!

And the only reason it is an A- it’s because my right knee was throbbing all night long with the precipitation! I woke up to an email response from Diane and she does NOT suggest that might sleep in my chair but she said that people do it and she gave me other options for me in the future!

I have a lot of things to think about …