Category: A Bit Of Randomness

I think things are serious now with my disease. I messaged with my doctor who wanted the ultrasound in January and because I have a calculus, she is ordering a CT scan of my bladder.

I am going to have my Mom call in the morning to make an appointment for June when I am still sleeping. After that appointment is made, I will only have August and December available for another van rental and another appointment. My year is almost full and I think it’s serious looking at 25 years…

Yesterday, my chapstick fell out of its tube. I could just use the little bit that was in there to touch my upper lip. I threw it out and started my last tube of Vanilla Bean that I have. I will order more next week when I get paid. I am surprised at how fast I am going through them! I use a lot of chapstick because I think it’s just harder to exist now… I go through a tube in 20 days, but it feels soft on my lips. Because my body hurts so badly now…

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.

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.

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!!!

Today is Recovery Day 1 because I totally and completely feel the effects of being outside in the cold yesterday!!!

I am watching this movie because it has been one of my favorites since I was 16:

Yesterday was ‘go time,’ and I am recovering from the freezing cold outside! This month, my Mom picked up my supplement order from Zerbo’s like she has for the past two months. She put it all out on my desk and this makes me so calm: