Author: Jen Rios

FRIGID!!!

I left the house today to get our haircut and man, was it frigid!!! When we were driving home after our haircuts, I just hugged myself in the back of the van and told my Mom that it is SO COLD!!!

We got into the hair salon, Danielle, my Mom‘s haircutter spoke to us, and I told her that I had not been out of the house since January 17 and man, this is freezing!!!

I have to leave the house next Tuesday to get my teeth cleaned by myself. I mean, my Mom

is driving me, but I am the only one getting my teeth cleaned because I have to get them cleaned three times a year now! This MS isreally getting serious now…

“Natalie Guchara”

My Mom will randomly think of a song and she will start humming it and ask if I know what song she’s thinking of. She did that today and I knew it right off and I told her, “Just Another Day” Jon Secada:

I immediately began singing along, because I knew all of the words. I was taken back to summertime between fifth and sixth grade or something like that with my friend, Natalie, we would walk to New Yasmeen Bakery to get cheese pies and we would sing that song!

As we drove to get our haircut today, I was thinking about that, and I could vividly see her neighborhood back then! When we got to get our haircut, while Christina was waxing, my eyebrows, this song came on:

That was another jam we used to listen to in her room! I remember that we would talk on the phone all the time for hours back then and when she would call my house, my brother, Ray, would answer the phone and he would call her, “Natalie Guchara” and would not let her talk to me until she told him that she was “Natalie Guchara.”

I haven’t thought about that in years!!! but to hear two songs today, that explicitly remind me of my friend, Natalie, “Natalie Guchara” was a very fond memory!!!

Check.

My supplements are set to be picked up tomorrow. Check.

My alarms are set for tomorrow morning. Check.

My hair is washed. Check.

Why is my heart racing so much?!

Well it is. I’m not sure why still though. I embarked on these routines starting in 2021. I did not realize that I was homebound until I read about it in December 2023.

Everything is getting harder now.

Haircuts tomorrow and I’m getting my teeth cleaned for the third time this year on Tuesday. Maybe because it’s so cold outside…

“Special Shelf” OR “Three’s a Charm”

My Mom called Zerbo’s today to make sure that they have all of my supplements to pick up on the 19th. They had everything. My Mom will pick them up on the 19th when we get our haircut.

We have fallen into this routine, organically, really, I think:

Probably about five or six months ago, my Mom spoke with the owner of Zerbo’s. Her name is Clara and she remembered me coming in there with Sean. She asked about me and how I am doing. My Mom told her that I see my naturopath in Flat Rock now and she told her the state of my MS. I am homebound now. They discussed that I could special order my supplements from Zerbo’s every month.

So this is what we do now:

On the first Monday of the month, my Mom will call Zerbo’s and either talk to Clara or leave her a message for which supplements I need. I then tell my Mom again just before coming in to get the supplements. Just to make sure they are there. My supplements are all there now and there’s something satisfying about that.

So, it seems that I am part of Clara‘s ‘special shelf’ (a shelf reserved for special orders) and I have been there for three months. So it seems that three’s a charm!

The weather is cold, and that is terrible but you have to take wins where you can get them, I suppose. I’m happy that my supplement schedule makes more sense to me now and the fact that I can just order them directly from the store. Such a relief!

Because now, I understand how important it is for me to have my supplements as my diseases progresses. My Mom has been telling me that for a while but now I have no choice but to listen. I feel terrible without them! I tell her that, “I can’t afford them.” But my Mom counters with, “You can’t afford NOT to have them.”

Glasses

I remember reading shortly after I was diagnosed with MS that people with MS have glasses. I did not fully understand that because I wore contacts. But then, after a while, I understood it.

I think I was fitted for my prism in 2021. I needed to wear it because it feels like each of my eyeballs are trying to focus on two separate things in both corners of my vision at the same time! The prism allows both eyes to focus on the same thing with what looks like a grid over my right eye. I got that prism after a four hour appointment with Dr. Skarf.

I have only seen Dr. Skarf three times the whole time that I had MS. I saw him when I was about five months pregnant when he told me that I had Optic Neuritis in my right eye, but he could not do anything for me because I was (in his words) “super pregnant.” Shortly after I had Sean, my insurance changed. But I saw him one other time when Sean was about 10. And the last time I saw him was in 2021. He told me that if I waited 10 years to see him, he would be retired. He’s retired now. I’m seeing my new neural ophthalmologist on May 7.

I am still wearing the glasses that I got on Amazon for $9.99. Dr. Skarf put the prism in the glasses. He has since retired and my field test is in May. I told my Mom to brace herself because it’s going to be bad because my vision is getting pretty bad!

I thought about this today as I was attending mass in my living room like I do every Sunday. My glasses were smudged and that annoyed me! I don’t even understand how the prism makes me see straight, but it does.

Grandfather! Grandfather!

I vividly remember hearing this conversation between my Parents. My Mom asked my Dad what he wanted to be called when they found out that they were going to be grandparents. I was 13.

My Mom and I have discussed this conversation many times since my Dad‘s passing. My Mom remembers the entire conversation and she recounts for me often. My Mom was going to be “Abuela” like my, “Abuela” who was her mom.

I have told my Mom that I will be Abuela as well if ever I am a grandmother. I remember hearing the conversation between my parents and my Dad did not want to be “Abuelo.” My mom suggested grandpa and papa and he just shook his head.

Then he told her that he wanted to be, “Grandfather.” Like in the movie Heidi. I vaguely remember seeing this movie as a child. But I do remember that she would yell for him at the end. “Grandfather! Grandfather!”

Because I now have Amazon prime, we watched the movie and at the end when she yells for him, my heart squeezed! It squeezed because I remember and I could hear my son calling my Dad that!

Sean came by yesterday and we watched it after my Mom told him about my Dad choosing that name as a grandpa. My Dad was “Grandfather” to all of his grandchildren.

Gritty OR “That’s a Great Song!”


This morning, I forgot to put my chapstick on as liberally as I do every day because my Mom was kind of making fun of me.

After I had my cinnamon, I rubbed my lips together, and they were gritty! I put more chapstick on, and then there was cinnamon all over it! My Mom offered to wipe it off, but I just shrugged and said, “Eventually, it’ll go away.”

I told my Mom that my lips feel gritty, and I told her that this song popped into my head, and I said, “Hot down summer in the city, back of my neck, feeling dirty and gritty” I was reminded of sitting in the backseat of my Mom’s station wagon with my cousinT Shannon and my friend Heather and we were all singing along!

My Mom said, “That’s a great song!” I told my Mom that we had listened to that song so much so apparently she liked it!

Pulling an All Nighter

I needed to make my June appointment today. My Mom did it. She made my appointment for May as well. I think that my disease has progressed to me NOT being able to do that anymore.

At least right now.

But let me ’splain ya, this appointment:

The appointment that I needed to make was for a CT scan of my bladder. I cannot go to Fairlane where I went for my ultrasound. I have to go downtown. But this particular scan is only done in the morning. My appointment is downtown at 8 am.

It looks like, my Mom and I are pulling an all nighter. At 43! I will be 43 at the time of this appointment. I’m 42 right now. We are taking Sean with us just in case.

Seems these appointments are quite involved now. I can make my optometrist appointment for July and my neurologist appointment for August. My neurology appointment will be virtually.

My dance card is almost full for this year and it’s only February. In April, I have a dermatology appointment at 10:30 a.m. I said that appointment was going to be difficult but I think this one will take the cake! I think it was 12 when I pulled my first all nighter, looks like 31 years later I’m going to be doing the same thing?!!!!!