Category: A Bit Of Randomness

This category is full of randomness that really doesn’t fit nicely into any of the categories having to do with my road to walking.

“She Worked and She Prayed”

I listened to that India.Arie song again today and I reread that blog post. I actually listened to the song a bunch of times! I remember when I chose that song. I really liked hearing it and I was dating someone at the time.

I really thought that I would get married; but that wasn’t in the cards. I really like that the song rings true even today, “She worked, and she prayed.”Even though I no longer work; I pray.

I never thought my disease would be where it is now and it is still making my head spin and I cry! It was nice to remember back when I was a college student. I have no idea what made me think of this song.

I’m really glad that I did though:

Scary

I saw my doctor last Tuesday, and I told her that, “ I’m not okay.” Today is day 19 post procedure and I’m still not okay. My body feels strange! I really don’t like it at all!

My Mom assures me that I went through something big and my body is not normal and then it will take time be more normalized. I constantly tell her that and somehow, I am not seeing it right now because this is a little bit scary!!! or A LOT!!! I wonder what it’s going to be like in seven years when I have to do it again. My disease is just going to be worse…

“Accessibility Team”

So, my brother got me a TV when ours went out during the summer months and I can’t even tell you when because it was so hot outside that nothing was making sense for me!

I think it was a few weeks ago then I called to tell them that I need a remote control for disabled people. I can’t see the buttons at all! It arrived last week, but I still am trying to get okay from my procedure! Today is 20 days and I think I am starting to get my feet under me so to speak.

We called the accessibility team today at Xfinity.

My Mom handled everything and spoke to Silva today. I had just received the accessibility modem so she hooked both of them up today. My remote control is 100% voice activated. I haven’t used it yet. But it’s all hooked up now!

I’m not sure how I feel about all of this yet. I mean, I know it sucks, but it’s necessary now. It’s just taking me a moment to digest!

“Halloween Week”

I live on the corner of two busy streets, so Halloween hasn’t really been a thing at my house. There are three houses on my block. We don’t have trick-or-treaters. Sean and I went elsewhere all the time. He actually stopped trick-or-treating when he was 12, which was a huge disappointment for me! I’ve been seeing Halloween week memes and I think they are adorable!!!:

#1

#2

#3

And then I saw this post from last year:

I don’t even work anymore. Haven’t since July 2018. But it IS Halloween week!:

3 Weeks

it’s been three weeks since my procedure and the recovery time it’s supposed to be 24 hours and in some cases it’s a couple days. Or how about, let’s try having MS for 24 years. so that changes the timeline! It’s NOT even three weeks! Today is three weeks and I’m not okay!

Whenever my Mom and I reference three weeks, we think of Fiddler on the Roof and specifically this scene:

I grew up watching Fiddler on the Roof at my aunt Linda‘s house. We watched all the time (my cousins and my brothers Jimmy and Dave) and we sang along with the music and we danced. singing and dancing was probably mostly just me and my cousinTs Dawn and Shannon) It wasn’t until I was in my house when I saw it was on so I just decided to watch it because I haven’t seen it in so many years.

BIG MISTAKE!!!

Seeing this movie for the first time as an adult, I cried my eyes out!!! I cried my eyes out because I understood the content of what was going on. As a child, I was just singing and dancing. But then I saw it as an adult.

I do I have to tell you that those songs hold a special place in my heart because of my childhood fun!!!

My, “New Normal”

I think that I have reached my, “New Normal.” I was not prepared for this, but this is how it is now. I think I may be starting to feel a little bit better and I don’t want to jinx it so that’s all I’m going to say about that.

What’s really helping me out right now is how encouraging my Mom is. When I tell her, quite dejectedly, that this is my ‘new normal.’ She’s quick to say, ‘only for a little while!’

I feel myself slowing down and I wonder how this is all going to play out! I’m not quite sure. There is a lot going on in my head right now!

24 Years?!!!!

Has it really been 24 years?!!!!:

I sent Sean my Mom for their birthday dinner yesterday. They went to Royal Kabob and today, on Sean’s birthday, they both had Buntlets from Nothing Bunt Cake. I got them both red velvet because that is the best flavor!!! I even got one for myself because, well just because:

I really can’t believe that I had a child 24 years ago today…

Disease Progression

I dropped my Yeti today that was full because I can no longer control my hands. Water was all over the living room floor! My Mom cleaned it up. This is after yesterday when I dropped my phone as I was listening to the rosary.

Before we started our routine, I told her that I have NEVER experienced what is going on with my hands and I’m a little bit scared. No, I’m a lot scared. My body feels foreign to me now. I wasn’t ready for this to start happening, but I am staring at less than two months away from a quarter century or 25 years of having MS.

We watched The Emperor’s New Groove today and I will ‘splain ya about that after I get paid. I wasn’t ready for this disease progression! But how could I NOT be?! #MSsucks!!! 😒😒😒…

2015

All of my good times are REALLY past tense now because my current existence is rough! I was listening to Apple Music yesterday and my chosen song ended, and this one showed up and it took me totally back to 2015:

I was still teaching back then and I was in my third classroom which was a converted closet off of the cafeteria. We used the cafeteria as a gym for the PE classes. I was still driving, working, and still using a manual wheelchair and I was going to Barwis Methods three times a week at that point.

I heard this song so much working in a middle school just as this movie was about to come out! Mr. Curl played music on Fridays during dodgeball and this song was on so much for the entire day. I also heard this song at Barwis as well! I was still working with Adam back then. It’s fall and it’s after daylight savings time because I would drive home from Barwis and it would be dark as I heard this song.

The Fifty Shades books were hyped way before the movie came out. I’m pretty sure that a bunch of teachers read the books at the same time. That sounds familiar to me. I had the three book set when Sean was playing football. I actually talked with another football mom, Jen, her son was friends with Sean.

I offered the books to her and suggested that she read them by herself. Don’t read them in public. she laughed and I brought the books to her at the next football game.

I brought them to her in a paper bag, similar to Gary in Parenthood. You know, the part where he has his dirty movies in it. Well, I had dirty books!!! She laughed when I gave her the bag and I have never gotten my books back, but that’s okay.

I fell to sleep thinking of this song and all of the memories from that time in 2015. Things were so different back then! I NEVER expected them to be how they are now!

My Morning Sneezes OR Snot and Spittle

I think that I attribute this to disease progression because I got my ducts cleaned in my house last May. Every morning when I wake up, I adjust my bed to be in a seated position and I sneeze three or four times.

I think I need to speak about my morning sneezes. I wake up in the morning, pretty groggy, and it takes me a moment to get my head together. Once I adjust my bed to be in a seated position, I sneeze and sneezing when I am barely is a little bit tricky!

Or at least, it’s gotten kind of tricky and I need to adjust how I react to them now. I am really having a hard time controlling my hands right now. That fact. kind of scares me! For example, a few days ago, I was about to sneeze and I grabbed a bit of a toilet paper from the table by my bed. But when I went to ‘catch’ my sneeze, instead, my finger went up my nose to the second knuckle, which obviously hurt a whole bunch! I am not even awake, and I made a strange sound of pain!

After doing that, I had to change my game plan. Now, I just let myself sneeze and when I sneeze and entails all the snot and spittle that ends up on my face each time! I think that that’s kind of gross, but it takes me a moment until I can blow my nose and clean off the spittle on my face.

My daytime sneezes are a game-time decision based on how I am feeling regarding the urgency of my sneezes. Most times, it’s just snot and spittle, but sometimes I can catch them and that is MOST comfortable for me!

Blowing my nose is very difficult for me now, so I like to ‘catch’ my sneezes meaning that I’d like to have the tissue in front of my nose as I sneeze so then I don’t have to push to get air out of my nose. That is very difficult for me to do now!

Sometimes, when I’m blowing my nose, because I have to push so hard to get air out of my nostrils, my nose makes a weird farting noise! The first time Sean heard that he didn’t know what it was and I told him that it’s just residual air leaving my nose.

My body is not normal anymore and does not function as it should. This is a hard reality for me to accept. I can’t blow my nose anymore?!