Month: February 2025

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?!!!!!

My Last Tube

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…

Serious.

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…

Grey Sky Morning

I finished all of my Christmas puzzles, and even the puzzles that were just winter scenes. But it is so cold outside, I wanted to get a winterscape puzzle and I could not find one and I didn’t like that! But then I saw one yesterday!!!

I I started completing it, and this song popped into my head and this actual video which I’ve never seen this movie or show before, but I think I would like it!:

And here’s the puzzle:

Oops! That was the video again but here is the puzzle:

And I completed the puzzle:

And you can see that my sleep schedule is totally messed up because I didn’t fall asleep last night until 6 o’clock this morning. #MSsucks!!! 😒😒😒…

Weird

This happened today:

This is a little bit strange!

Let me ‘splain ya:

I had to start using this chapstick on January 20. Because I already used my ENTIRE Mint Cocoa tube! (and now it’s discontinued, so I’m not sure what I’m going to do) And here it is February 10 and I used the ENTIRE tube again! I’m surprised at how fast I am using the tube and I will order more chapstick when I get paid. “Go time” is next week.

A haircut and a teeth cleaning this month. This is the first time that I will have three teeth cleanings in one year. That feels weird! But teeth are important to me! And this disease is progressing… I am aware of my calculus in my bladder! That stinks! I hope to get an appointment in June to get it zapped.

This is the first time that I have not have the entire tube out. A ‘rice cake’ size piece of chapstick broke off right when I started using it. I am saying ‘rice cake,’ because that’s what it reminded me of! I wasn’t sure how that broke off, but it was weird when I tried to use the tube for a while after that. It had to get smooth again, and that took some time!

And then, the chapstick fell out of the tube. I had to just push it back in and I’m not sure how that’s going to go when I finish the tube. We will just have to wait and see. I’m sure it will be weird.

I Don’t even Like Math?!

So, my doctor called my Mom. I have a “Calculus” in my bladder.

What?!

I don’t even like math! It’s a bladder stone, similar to a kidney stone.

She is speaking to a doctor from the urology team because she does not do this procedure. They will get back to me when know more. My Mom let her know my availability for this year.

I have been feeling a pain on my left side of mylower abdomen as of late. That’s probably what it is! I have had MS for so long and stuff is starting to happen… #MSsucks!!! 😒😒😒…

I still REALLY don’t like math!

About Yesterday…

I pillaged today because it’s Saturday. But about yesterday…

Yesterday was the first time that I have ever cried big, fat tears down both my cheeks when I’m getting out of bed. I usually just have stinging tears so I can wipe them away from the corners of my eyes without my Mom noticing.

My Mom asked me why I was crying and all I could say was, “It hurts!” kind of exasperated. Not a great start to the day! But I did see a Facebook friend and former colleague post this meme, and I really dug it and had to repost it myself!:

Screenshot

So, I watched Miss Potter yesterday:

I love this movie so much even though my Mom told me it’s not entirely factual but I still love it!!!