Month: April 2022

#MyGirlL: The Little Mermaid

I woke up really late this morning, it was really afternoon, and I’m going to spend the day recovering and trying to figure out what kind of blog post to write about my new bed that we got yesterday but my Mom took this picture of Leia today just minutes after she finished uncovering me.

I sent this picture to Sean and I told him that she is Ariel. But then I had to explain the reference to The Little Mermaid to him because that’s MY movie but NOT his! But I told him that she wanted to be ‘where the people are.’

My Parents Love Me

So, tomorrow I have an appointment to look at and possibly, (most likely), order an adjustable bed for me. It will be a twin sized bed. It will just be my Mom and me going to look at it. Sean’s friend won tickets for opening day and he has been friends with Sean since they were four years old and in preschool. When is he ever going to sit in the third row without paying for it?! It’s just my Mom and me who do almost all of my transfers anyway.

I gave my Mom a warning that I may cry tomorrow. My Mom responded with telling me to keep all negativity away but I told her just as my voice started to crack and with tears in my eyes, “My Parents love me.”

I had a virtual appointment with my Speech Pathologist yesterday and I talked about going to look at the bed tomorrow. I told her that I have not bought a bed since, and it took me a moment to think about it, since 2006?!

My bed is STILL super comfortable and the only reason I am getting a new bed is because my disease dictates it. My Mom read my blog post about my Dad agreeing that they needed to help me and she says that I misquoted her. She told my dad, “This is going to be expensive, Ray.” To which my Dad answered, “Yeah.” And then my Mom continued, “We have to help her.”

My Mom has told me that this bed is a gift. I told her after a few days of letting that sink in that the only reason that I am accepting it is because I can hear my Dad say, “Yeah.”

In attempt to keep my tears at bay tomorrow, I will be singing this song in my head:

My New Emoji

I was randomly scrolling through Facebook and I saw this post and I reposted it because I never thought about it:


My Facebook friends did not disappoint and they started posting s ‘Hi’ to me. And the same day I posted that on Facebook I saw this tweet on Twitter:

Just

I didn’t have an embarrassing nickname from my parents but from my brother! He has been calling me those for the past 27 years but no one ever noticed before social media! Now everyone knows!:

I received a ‘hi’ from my Facebook friend and this was the first time I used this emoji that showed up in my phone because Big Brother knows that I am in a wheelchair! I wish it was a power chair!:

It’s something to look forward to I guess, my new emoji and a power chair. Do you hear that Big Brother?!

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…