A Refresh

It’s been a minute but I think my YouTube feed refreshed and I was able to see this video:

Maybe that’s what it’s doing, just posting videos that I have never seen before of songs that I love so I get to enjoy them! At least, that’s what I’m telling myself! I love you so much, Bono!!!

Further Proof of, “No Espace”

So, I had my latest MRI on Tuesday. It was a neck and brain MRI. I had never had an MRI in the downtown hospital so that was a new experience for me. It was in the basement. We were told where to go and after we wound through a bunch of hallways, we reached Bay 1 where my MRI was going to take place.

Laila told us to wait for a moment because somebody was using the machine. So I’ve written before that my Mom comes with me to ALL of myself medical appointments. Tuesday evening, I completely remembered why that is!!!!

We were directed to a room well I was going to have my MRI. There was a small gurney where I would lay down to be pushed into the machine. Two young women technicians were there as my Mom and I came into the room. When we entered the room, my Mom surveyed the situation as one of the technicians asked very politely, “ how can we help?“ I looked at my Mom and she made one statement. She said, “Just stand there and watch.”

I immediately heard Bruno Mars in my head:

I think the women were a little bit shocked but they didn’t say anything and marveled at how well my Mom transferred to me. This was further proves that there is no espace between me and my Mom! The MRI lasted almost 2 hours and when I came out of the machine, two young guys were there and Laila who is running the machine was there as well.

My Mom easily put me back into my wheelchair. There were two male technicians when she did this and because I was laying on a sheet and would slip off the gurney easily, she told them that I have no core strength and to hold me which they did!

I have more to say about my MRI experience but I’m still processing that but I thought I would share that my Mom is the best in the world! One of the men holding me in place on the gurney said something about how well my Mom transferred me and she responded that she does this every day! Because she does! Multiple times!

Oh, Shan!!!

Just now, nestled deep in my YouTube feed, I saw this video and immediately thought of my cousinT, Shannon!!!
💜💜💜💜💜💜💜💜💜

This song will FOREVER be special to me and remind me of her and our, “Super Binges” BEFORE those were a thing!

Both.

I had an MRI last night and I’m still processing evenys from that time before I can write about it. But, one thing I can write about pretty easily is that as I was going down the long hallway that I have been using so many times over the years. She was on the opposite end of the hallway and as I was coming down the hallway and we approached each other, she smiled and asked me a question.

I was wearing my Michigan sweatshirt (The one without the bleach stain on the arm) and she smiled at me and asked, “Is that football or basketball?” as we passed teach other. She was referring to my sweatshirt and I kind of laughed and gave her the best and most honest answer I that could. I called to her over my shoulder and just said one word, “Both.”

My 5 Senses

I had a fond memory this afternoon when I put my chapstick on for the first time today. The memory came about so quickly and I think that I can explain it using pretty much all of my senses! I am wearing the pomegranate flavor for my chapstick today:

In order to use up my summer flavors, I have used a different flavor for each day of the week. Thursday, however, is reserved for cucumber mint because that is my favorite!

The memory was sparked immediately when I opened the chapstick cap and a very small amount of chapstick that was left to be used fell out of the tube. I was able to catch the little plunger as it fell out of the chapstick tube. As I was putting it back in, I smelled the pomegranate chapstick and I thought of Barwis. I wore the pomegranate chapstick in the early days of working out at Barwis and I remember smelling that the day my cousinT, Shannon, came with me.

So, my sense of smell is in use in this memory because of the pomegranate chapstick but if I’m going to talk about Barwis, I cannot forget the overwhelming smell of a turfed football field! That’s what it smells like!:

These pictures were not from the day my cousinT came to Barwis with me but it’s from that first summer I’ve trained at Barwis! Back before the current renovations were completed. Jesse stretched me out similar to this each time we tried to get steps off.

So, with my senses engaged, I have sight, smell, taste, (I’m chewing my peppermint five gum then and now) and touch taken care. It only leaves hearing. I love that I thought of this particular day with my cousinT, Shannon coming with me to Barwis. I naïvely thought that it would be a lateral progression to me walking. I did not think about all of the variables and how it would ebb and flow.

But back then, the summer of 2013, I had recently heard and decided on my, “Walking Song” on the radio. I remember that day with my cousinT about how that song would be my Walking Song”:

So, I loved the video when I first heard this song and I wanted to be able to dance again one day. Jesse told me that would be a long way off but back then I was so motivated and I stupidly believed that I would walk again.

No Espace

So, it’s common knowledge that I like to watch the same movies over and over again which I think is a trait I learned from my Mom. It has worked out with her staying with me throughout this pandemic because we have a very similar taste in movies. A few weeks ago, we saw, Spanglish, and my Mom and I have quoted it often! Last night as I was drying my hands, I was clearly reminded exactly why we “it!

The quote we say from the movie is toward the end and it is when the mom speaks to the daughter. The mom does not speak English very well and the daughter is growing up in the United States. She tells her that she needs space from her mom and turns away from her. The mom looks at her, grabs her shoulder, and tells her that,There is no espace between us.”

Last night, as we were completing our routine to get me ready for bed, I was staring off into space and drying my hands when I said with a far away look in my eye, I said, “I wish…” and a good deal regret in my voice as I thought of all of my limitations that have come about in the past five years. But before I could finish that statement, my Mom simply said, “Me too.

I looked at her and we met eyes and in those moments without speaking so much, we realized, (REALLY I realized) that there REALLY is no espace between us.

“I’m Doing This for Free!”

I posted this quote on Facebook a couple days ago:


Today was, ”Leg Washing Day” end it was the first time my Mom changed my socks to a smaller size I had just bought. The previous size was not tight enough on my leg so it was leaving marks.


I had called earlier when I started getting marks on my legs but they told me it was the humidity that was causing my legs to swell so these marks weren’t a problem but they didn’t feel very good:


But when she saw the lines on my leg that would happen when I was sleeping, she told me that I needed a smaller size. They recently came so my Mom put them on me today and they feel great!

So, these socks are a bit more snug than my previous socks and I have known of people NOT wearing compression socks because they’re too hard to put on! My Mom has been excellent at putting compression socks on me and she always has done it since I started to wear them. She struggled a bit at the smaller size and it kind of hurt my leg as she was pulling the socks up.

I kind of groaned and told my mom it was hurting. My Mom shifted her gaze to look at me from my feet and told me,” i’m doing this for free!“ As soon as she said it, I started laughing hilariously! She started to laugh as well which was those if we were both laughing at the absurdity of it all!

She really is the BEST caregiver and if I could, I would pay her but instead; I am lucky that I can cash in on the fact that she loves me!!! I really enjoy how we can laugh together so much of the time!

My Civic Duty

Today was voting day in my city I really take voting seriously and have participated in almost all of them. I have only had two mayors for my entire life living in the city. I voted for a third one today:


I was not able to vote absentee so my Mom took me to my precinct to vote. But, it’s August. and therefore extremely warm outside! I noticed the woman who checked me in, who has checked me in for years, noticed that my disease has progressed. I was in my motorized chair and was wearing glasses.

it didn’t take very long to vote but I am grateful that I did! I was number 703:


My Mom told me to throw away the tab on the top of my ballot. I laughed and threw it away but before I did, I told her I still have the bell tab from the first time Sean and I voted together!:

Okay

J

Bug Hull

I’ve had one of these before when I first went organic. It was a bit bigger and the tops were purple and blue. I stopped using it when I realized it wasn’t good for my supplements to not be in dark bottles so I just took each pill out of it bottle when I needed it.

However, MS, being the absolute gem that it is, has begun to mess with my short-term memory! I can’t remember if I took my evening vitamins or not! I had to figure out a way to keep track and let go of the fact that these are for older people. I purchased one last week and it arrived on Saturday:

hey 👋🏼

I looked through the description and I was thinking this looks like what I need! My pills have to be kept in the dark and I have a lot of them so I need a way to organize them but this picture gave me pause before I ordered it:

This pillbox is made for older people! I am not that old! Yet…

I filled the pillbox on Saturday evening and will do it again this coming Saturday. I asked my Mom for help at this time though to make it easier because I can’t control my hands very much these days…

I Am Who I Am

A few days ago, I received my vitamins in the mail. Because of Covid, I am not going to see my Naturopath/chiropractor so I call my vitamin order in and they send it to me. I lined them all up on he desk beneath my TV. No, this is a process! First of all, I am well aware that I am OCD! I’m not embarrassed by it at all! When the package arrived, my Mom cut the package open and gave it to me. I took each bottle in its box and lined them up on the desk:

Looking at my desk, I feel rich! At least I will right now for a little while! The fact that all of these boxes are lined up on my desk leads me to another blog post but I need to think about that still. My Mom watched me painstakingly taking the boxes out of the package and lining them all of according to box size and she shook her head and started to giggle a little bit:

I knew what she was laughing and I just looked at her and completely straight face and told her, “I I am who I am!” The moment those words came out of my mouth, I heard this song and was taken back to being a child:

Sorry for the duplicated picture… I can’t figure out how to delete it…