Month: January 2025

Right now, my head is spinning and I can’t believe how much I am reeling at how unable I am now!!! It looks like 24 years of having MS is even MORE of a motherb*tch then I thought!!!

I told my Mom that I am totally okay with how much she needs to nap because I am asking her to do a lot now! I told her that I’m ‘leveling up!’ With this ‘leveling up,’ she has to do a whole lot more!

I really don’t know what I was thinking! I saw myself throwing my wheelchair into the trunk of my car at work when I was 65. I think it’s crazy how none of that happened and I am so in-firmed now. I think I was 34 when I had to surrender my license and in December 2023, I learned that I am technically homebound. Because I really am! I try explaining that to my Mom but she doesn’t quite get it.

For example, in January I had an ultrasound which I can’t ask my doctor about yet because she’s out of the office. February I have my first. ‘third teeth cleaning’ at my dentist. My hygienist told me that she knows that I am doing my best, but she suggested that I moved to a schedule for a cleaning every four months.

I knew my Mom had made the appointment for six months with her hygienist for both of us already so I said that I would just keep the sixth month appointment that my Mom made.

Getting into the van, I told my Mom what Kristin said, and she told me that my Dad went every four months. I didn’t know that! I talked to Sean right after I got home and he let me know that health can go really bad(ly) really fast in your mouth! I made the appointment the next day. But it’s for February 25 so it’s five months since my Last cleaning.

in March, not only am I going to see my internist to get weighed, I also have to see a specialist because people with MS have problems with this specific issue. I’m a little nervous about that one… I really am ‘leveling up’ and I can’t believe I didn’t see this coming because I really didn’t!!!

Today, after I was out of bed, and my Mom gave me the detox I take each morning for my urinary tract health. I listen to a 20 minute rosary and then she gives me my Ceylon cinnamon also for my urinary tract health.

Having my detox first thing in the morning is a little bit much. It tastes like Albuterol. I have to take it with hot water. But the Ceylon cinnamon it was a little bit MORE than a little bit much.

Thinking about it, my Mom is my apothecary. She mixes all of my naturopathic/preventative things that it seems I will take for the rest of my life!

This morning, she hands me my one cup measuring cup that has the cinnamon and just a little bit of water with it. I have to stare at it for a moment because I’m still trying to wake up.

It takes me a moment to brace myself for this disgusting ‘mouthful of dirt’ that I’m going to have to swallow. It’s no longer really hot like it was when I first tasted it but I have been having this ‘mouthful of dirt’ for so long now. And for the rest of my life it seems.

Today, she looked at me and watched me brace myself before I took the shot of cinnamon water. As I drank it all down, she told me that I was hard-core! She puts a little bit of water in the measuring cup after I drink it, so as to get the residual cinnamon in the cup. Once I drank that down, I looked at her and said, “Of course I am! Look who my Parents are!”

She just kind of smiled in agreement as I started saying my next rosary to wait to drink my nutrition shake.

When my Mom came into my room this morning, she turned the light on, and I said, “This are hard.” This statement comes from a book that we had in our house when I was a child:

I’m not even sure who’s book it was. My Mom agreed immediately, and said, “Every day!” That’s what we say because it is really hard every day now! I seriously cannot wrap my head around the fact that it is so hard now! I actually was able to make my visual field test appointment today for May though. My life it SO SMALL now!!!

It was not easy to wake up today. But it was easier. When my Mom got to my room, Leia followed her. I heard her feet just after my Mom turned the light on. I said, in a monotone voice, “It’s my turn girl, go away.”

My Mom said something about me being mean but I reminded her that this is the MOST traumatic event of my day, getting out of bed, and that I most likely will cry every single day!

I didn’t cry today, but I was on the verge. Most days tears just leak out of my eyes, almost involuntarily I think because I wake up so groggy! I tell my Mom that it’s only going to get worse from here on out. Because it will. That stinks! #MSsucks!!! 😒😒😒…

My Mom wanted to watch this movie today and I vaguely remembered it so I was game:

I only vaguely remembered this, and this is the reason why:

I was only three years old when this movie came out, but I do remember in the beginning, “He took daddy‘s boots!” And I remember the ending with him holding her in his arms and the sun was shining through the window.

I was reminded of my aunt Rita and I asked my Mom if we saw this at her house house which sounds kind of familiar.

I watched The Accountant today just to get The Upside out of my head because I woke this morning thinking about Phil talking about, “A sea of hands” and I do not experience that. My disease is progressing 100%!!! I am completely startled by it but it’s just my Mom working with me.

I say it with the distain that Disability is for the rich but I don’t have to pay people to take care of me! My Mom loves me! And the care Sean gave me when he had to help me out, was through the roof!!! He loves me too! I was thinking about that and I told my Mom, kind of tearfully (for both of us) that we love each other so it’s okay.

But, I had to get that movie out of my head because it is just too much for me to really think about right now! So I watched The Accountant because I didn’t want to think about the care that I need now.

I don’t remember the last time I watched it, but I own it, and I watched it again today. right when Ben Affleck dumps those whiteboard markers into the garbage can and begins rolling up his sleeves like my Dad used to roll his sleeves up and I was sitting by myself in my house, but I just clenched both of my fists, and raised them up a little bit over my head, and said out loud, “He’s so crazy! I love it!”

Sean called me because he went to dinner with my Mom and his aunt and uncle and now my Mom is visiting my aunt. He told me that normally people watch a wholesome movie to get them over watching a terrible movie. He thought it was strange that I was doing the opposite! I just laughed! I actually wonder how crazy I am because that’s totally true!!!

He said something about me wanting to watch a movie where 15 people are killed. I corrected him and told him that it is way more than that and they are brutal killings like beaten and shot in your head. Then he thought about it for a moment, and said that I was correct, and that’s crazy! But I guess I am too and maybe that’s why I love it?!

I watched,The Upside, again today. It has been a really long time since I saw it. My Mom laid down in the middle of it, and before she laid down, I told her that this movie proves that Disability is for the ultra-rich. Which I am not!

I thought about, Me Before You, as well, but that one is kind of really sad! But it further proves that someone can modify their stables to make a fully accessible apartment for their son. Yeah, that’s not me either!

I watched The Upside with commercials today. I don’t like commercials at all! And usually, I can find one of the platforms that I have that doesn’t have commercials. I couldn’t today. I watched it on FX.

I saw an MS commercial three times today. I hated it! I said that out loud each time I saw it. I remember talking with Suzanne, Dr. Elias’s nurse, (who are both retired now and here I am still sick) we were talking about MS commercials and I said I hate them and she just said that everyone hates them!

I had something to say about each person who was in the commercial! People were walking down the street with ease and driving. One woman put her arms up over her head in a V and I remembered when I could still do that. I really didn’t like the woman at the end who like had a podcast or was a DJ or something.

The amount of effort that it takes me to speak now makes me cry at times. I really can’t believe how small my life is now but it’s just the way it is now, I guess. I told my Mom that I used to see myself throwing my wheelchair into the trunk of my car when I was 65. Or maybe I will stop driving 30 years before that?! Because I did! I think I was 34?

Wishful thinking now. I can’t believe that I saw that commercial three times and I hated it every single time! Maybe that’s why I don’t like watching commercials?

I had written about my January appointments a while ago. And a former colleague and Facebook friend told me about my Tuesday appointment. She said it was going to be really cold!

I originally thought that I could just power through it but then I saw this on Facebook:

My Mom told me that my uncle Al told her that it was going to be really cold that day. When she told me that he said that, I thought of that saying that if ‘two people tell you that you are drunk, go home and lay down.’ Or something like that.

I canceled my appointment yesterday. I cannot believe that I thought I could go to the doctor today! It’s cold enough in my house, I think I told my Mom about four times that I can’t believe I thought I could go outside today!

When I saw that article, I was reminded of the Polar Vortex of 2006? I was still teaching English then. Teachers had to report and students did not. I just remembered sitting at my desk with my hat and coat on and freezing my butt off! I ended up going to the teachers lounge because they were no windows there.

I only went into work during a Polar Vortex that time. I want to say that in my 12 years teaching, there may have been one or two more days we had to do that. I just called in. I could not handle that!

I said on Facebook to another former colleague that 24 years in, I don’t think I can handle that at all! I was just six years diagnosed with MS when I tried to Weather the Polar Vortex. That was terrible, and I’ll never do it again!

I will leave my house February 19 for a haircut and then again on February 25 for a teeth cleaning. I haven’t gone to get my teeth cleaned by myself since before Sean was three. That means for the last 20 years, we have always gone together. Then, I was going with my Mom but now I have to go three times a year by myself. #MSsucks!!! 😒😒😒…