Author: Jen Rios

‘Can’t’ OR More on that Recalibration and Segmentation

I shared this meme on Facebook because it’s MS awareness month and I am part of 19 support groups for people with MS:

I have many mutually followed MS warriors and we share memes all the time!!!

But here’s the thing, I am slowly realizing that ‘can’t’ is definitely part of my vocabulary!!! It’s not that I wanted it to be in my vocabulary but it is here now and there’s nothing I can do to stop it!

The first ‘can’t’ I came to painfully realize was last Wednesday morning when I tried to pay my bills before I got out of bed and we were getting ready for the day because it was, “Go time.” I know that I needed to place my Target order and my Amazon order because my Target order has my nutrition shakes and my protein powder and the Amazon order I place is for my medical supplies.

I was able to pay my mortgage and place the Target and the Amazon orders but then my brain stopped! It has ‘stopped’ one other time and that was because I needed to change over to a nutrition shake so I was getting more nutrition.

I couldn’t just go back to sleep but it was definitely startling that my brain stopped functioning! I think it’s terrible that I ‘can’t’ as much as I want to!!!

So, this is the solution I came up with for next month is to segment my bill paying and I am working on recalibrating my current abilities which aren’t very much anymore…

When my Soul Hurts…

I have already said that I know that I am old because I listen to old music. I like to get lost in a playlist that is music from our second apartment. I love me some Gavin DeGraw, Carrie Underwood, Sara Bareilles, Train, The Script, etc.

I appreciate getting lost in music from when I was more able-bodied. It’s comforting to me. I am dealing with a whole lot with this disease progression and my speech pathologist had to reschedule our appointment for next week.

But there is one thing that I have discovered, I absolutely appreciate being lost in my memories but when I feel like this, when my soul hurts, I will put on a U2 playlist!!! I like listening to the 18 Singles album as well as The Best of 1990 to 2000. U2 has been in my soul for my entire life!!!

This is NOT Okay!!!

I am still using my vanilla bean chapstick because it is too cold to transition to spring flavors!!! I checked the weather just now:


Wait. What?! This is not OK! This is NOT acceptable weather after my birthday! So much so, look at my girl:


She has started her allergy shots regiment. My Mom is slowly increasing each shot but I don’t think that the serum is making her tummy feel good! My poor girl…

Cold Lasagna

I have been thinking about this since last Thursday. I got my ID renewed and I found myself crying for 30 minutes by myself as my lasagna was getting cold! I knew that I was extremely tired but it wasn’t until today that I family realized why! Here it is:

This all took days for me to realize but before we went to the Secretary of State, we stopped off at Les Stanford to get a license plate that my Mom needed to get.

My Mom walked back to the van with Ali Reda!

I have known Ali Reda since he was a salesman at Bill Wink Chevrolet. That dealership was walking distance from my house growing up. Once I learned how to drive, I used to drive the car there and walk back to my house while it got its oil changed or whatever.

My Dad bought all of his cars from that dealership and he had his preferred salesman, Bob Kapp. I remember being in the market for a new car and that salesman had left but I still lived in my Parents’ house. I asked one of the service guys to direct me to a different salesman and he told me Ali Reda.

I have bought two cars from Ali this far. I leased a car and then I bought the car I currently own. I haven’t seen him in so long and he came to the van door and I smiled brightly!

But I could not trust myself to say anything because I was definitely going to start to cry. I was a far distance from the young woman who purchased two cars from him as I sat there sitting in my power chair strapped to the floor of the van.

Things have changed for me so much since I last purchased a vehicle from him and I think that’s the reason that I was crying when my Mom took the van back. I ate cold lasagna that night.

Nostalgia Central

Tonight was a Barwis night for sure!!! My days training at Barwis were COMPLETELY in the forefront of my mind!!! Sean stopped by for dinner, he picked food up for him and my Mom and I had my usual gruel because that’s all I can eat now. The Count of Monte Cristo is on Hulu so we watched it. I thought of my days on the stander at Barwis when I was training with Adam. And this is my scene to get me through 10 minutes of standing on the stander:

My Mom laid down as I was playing the match game on my phone and listening to Carrie Underwood. That reminds me of our second apartment. When the Some Hearts album finished, Luke Bryan started playing and then that was followed by Sam Hunt. That Luke Bryan song used to remind me of Adam and Michael and I talked about that Sam Hunt song when I was training with him. It was completely nostalgia central tonight!: 😍😍😍

Training at Barwis was the happiest time of my life back when I was so hopeful to be walking…

More Recalibration Needed…

So, today is St. Patrick’s Day and I got my first St. Patrick’s Day shirt for people who are NOT Irish! I rocked it last year for the first time and I wanted to rock it again this year! Well, actually, I am wearing it right now. Let me ’splain ya:

I went to get my ID renewed yesterday after picking up the van and getting my haircut The day before yesterday. I have this all planned and out for the year in terms of my doctor appointments because I see a lot of different doctors now because my disease is progressing so much.

Last Wednesday and Thursday were the hardest days to this point of me having doctor appointments and stuff. I changed my shirt before we left to get my ID and as my Mom was getting my sweatshirt out of my bedroom, I snapped a picture.

On the way to Secretary of State, my Mom was looking at me in the rearview mirror and she asked, “What is this face? I have never seen that before!” I didn’t know what face I was making but I just responded by saying, “I have never felt this feeling before!”

I looked at the picture I had snapped of me in my Irish-ish shirt and I guess that was the face I was making in the back of the van that my Mom commented on. I guess more recalibration is needed:

Recalibration and Segmentation

Thinking about these past two days and how difficult they were, I need to do some re-calibration. I think it’s going to take me some time to sift through all of that but my abilities are changing and I no longer can do what I used to be able to do. I think I just need to segment my movements more.

Once I was finished and seated in my house, I realized how difficult it has become and I just sat there and cried for probably about a half hour as I was seated in my house alone because my Mom is taking the van back. Wednesday and Thursday I sounded kind of like Nicki Minaj and this song is in my head so I have to put it in here:

My mind is full and I’m not sure what to do about it. I do not need to think about leaving my house again until next month so I have some time to think about my much needed Recalibration and Segmentation.

Done.

Yesterday, I rented a van to get our hair cut and then I needed to go to Secretary of State to renew my ID. It had been expired for the entire 2022 year! I told my friend Bert that I have not had a valid ID for an entire year and explained that that was going to be my monthly outing for March. This is what he said:

We left early for my appointment because I am NEVER comfortable out of my house handling business so my Mom and I put a game plan together and then we went.

We got to the office at 3:34 p.m and my appointment was not until 4:20 but a nice woman took us and my ID stuff was handled right away. I can get my taxes done because I have a valid ID now! Or at least I will in about three weeks… I was back and seated in my house by 4:45. This was an extremely hard two days but I’m pleased to say they are done.

A Valid ID

I thought about crying yesterday morning for the rest of the day and I was puzzled. Today, we began one of my, ”Go Time[s].” And I am already exhausted!!!

We got our haircut today so the van stays in my driveway for my appointment to get my ID renewed at the Secretary of State tomorrow.

Christina asked me if I was okay as she was cutting my hair. I just told her that I was tired! I am tired but I am remaining focused until tomorrow after I get my ID renewed.

Last year, we found out that it was expired so I have had an expired license for the entire 2022 year!!! We have found out for months that the DMV is not a well oiled machine but Sean was able to me an online appointment.

I think that it’s pretty terrible that everything is done online. What about for people who cannot see?! Because that’s me right now!!! That fact is so startling to me that all I have been doing for the past couple days is cry. That is the ‘something’ that was coming. They are just sad and pitiful tears and I hate them!!!

I will be done tomorrow after I get my ID renewed. I have to get my taxes done so, I need a valid ID!!!

This Hurts

This morning, well actually, it was this afternoon when I awakened. My Mom came into my room and started taking my blankets off of me. I was situated in the “TV”position for my bed so I was pretty much sitting upright.

We don’t really talk much as I am waking up but we will have a conversation. Today as my Mom was moving my chair from where it is plugged in for the night to put it where it needs to be for me to get into it, I looked to my right at her with tears in my eyes and I said, “This hurts.”

This statement kind of startled me and I am STILL trying to make sense of it because in the 22+ years that I have had MS, I have only admitted it hurts with tears in my eyes twice now.

The first time was when it was raining and my Mom was driving me to work. It was my last workday before I stopped working because I needed kneesurgery. I remember crying because it was raining but I’m puzzled that I cried this morning and it is not… does this mean that something is going to be happening to me soon?