Author: Jen Rios

As my disease progresses, I’m quite startled at how things things that I used to do with ease, I no longer can do. I had one of those realizations today, and I know it’s no big deal, but it kind of bothers me!

Let me ‘splain ya:

Sean and I have known that Dove chocolate is the BEST chocolate around for a long time! Since Sean has been alive, I have been on a diet. However, I will break my diet for some Dove chocolate!!!

For instance, each Christmas, I would always get him a big bag of Dove milk chocolate candy to put in his stocking that we would share. It kind of sounds familiar that one Christmas, I bought myself Dove chocolate as well to put into my stocking so that we would have more chocolate to eat together! That sounds like something I would do! We would both read the quote in the wrapper aloud and I would save the wrappers of the quotes that I liked! I know that I have shared wrappers that I’ve liked over the years both on Facebook and on Twitter via my blog.

I told my Mom in the summer of 2019 that, “Eating is no longer easy or enjoyable!” Because it no longer is! I have written about what I eat before and it is just ‘tack and gruel’ like a pirate, at this point. (overnight oats with added protein and crackers)

I have been telling my Mom as of late, since just before Christmas, I think, when she would want me to look at something, I say, kind of startled, “I can’t see that.”

So then here is today, I got Dove and mint chocolate for Christmas. I had to stop having milk chocolate because I think.my, “Lactose not a good idea” is getting to be a little bit much in terms that I am extremely phlegmy whenever I have milk now.

I switched over to Dove dark chocolate, and I was having no problem with that! I think me and Sean eating Dove chocolate was when he was younger and now I have been eating dark chocolate for years! But MS continues progressing and dark chocolate has proved to be too hard for me to bite into with all the muscles in my mouth not really working that well anymore.

I found that dark and mint Dove chocolate is okay for me to eat! The dark does not have lactose, and the mint makes the dark a little bit softer, so I can bite into it! I love mint chocolate!!! thin mints are my favorite Girl Scout cookie, and they have been forever!!!

I eat one square a day. Looking at how Dove has their logo on the chocolate, I would always know where I should bite into it, based on where the writing was. However, today, I realized that, I can no longer see that. I just have to bite into the chocolate in a corner of the square. Sometimes it’s the top with the logo and sometimes it’s not.

I think that I am getting more OCD as I age but it kind of is a bummer that I can’t feel the indented part of the chocolate. I just bite into it now. I have to deal with this disease progression, but my Mom already got the van for my ultrasound tomorrow. It’s ‘go time’ again tomorrow, and Sean is coming with us just in case he has to lift me onto the table.

I have known that season three of Bridgerton came out on Christmas 2024 for a long time! I just couldn’t watch it!!!

Let me ‘splain ya!:

I very much wanted to watch Bridgerton, Christmas Day, but we had festivities going on. It’s very strange to watch certain TV shows with my Mom!

I learned that when I binged Game of Thrones! Each time that my Mom came into the room, it was a most compromising scene! Just like it is with Love Actually.

I do not care how old you are, when your mother sees you watching something risqué, it’s totally uncomfortable!!!

Well, today, I was able to finish watching Bridgerton season three. I think this was my favorite season!!! I am a firm believer in the fact that that, “Big girls need love too!!!

As a former ‘Big girl,’ it was my favorite thing to see Pen marry Colin but Sean was just telling me that I am not a ‘big girl’ anymore. That fact is so BEYOND uncomfortable! Even more uncomfortable than having my Mom walk into the room for certain scenes!

I was just telling my Mom last night as I sit in my bed before I go to zero gravity; it’s unsettling to see how small my hips are now. I wonder if that will ever go away? Because it’s happening, regardless.

I was able to watch the last two episodes today by myself. My Mom went to pick up the van for ‘go time’ tomorrow and she visited my aunt before coming home to wash my hair.

‘Go times’ are getting harder now and I need to spread them out. Scheduling appointments when you have a chronic illness is getting to be quite difficult as well, seeing that all of the specialist that my primary care doctor tells me to see, have very short clinic hours! I schedule appointments at least four months in advance now.

I am happy that I am kind of knowing the ropes now because it’s been so long that I’ve had to see these doctors. I will see my neurologist virtually in August. The last time I had my appointment with her, my Mom will move my phone as I am showing her how I move my body.

My Mom told me after we hung up that I was making all the movements before she was finished telling me how to move my body. I told her that I have been doing those movements for 23 years! I know exactly what to do! And then I told her how they have changed over the years with my disease progression.

But, let me not think about that now because I’m gearing up for ‘go time’ tomorrow. I’ve already set my alarms to get up super early and I know what orders I need to place.

I will leave the house on Wednesday, Friday, and the next Tuesday. That is it for January but I already have my February appointments scheduled because I am getting my teeth cleaned on my own schedule now. I have to have three cleanings a year now.

I am NOT comfortable with this disease progression at this point…

Both of my eyes were tearing ann awful lot last night as I was going to sleep. And this morning, as I was beginning to wash my hands, my eyes started tearing again.

My Mom suggested new eyedrops. I have been on two different eyedrops for a number of years now. I take one drop of Pat-a-Day each morning upon waking and then after I put my contacts in, I will use re-wetting drops for contacts as needed.

As my Mom was getting the washcloth for me to wash my hands, I told her that I have had optic neuritis for 24 years. (Actually, I think it is 23 because I was pregnant when I was first diagnosed. So, a little bit less than 24.)

I just told her that it sucks to suck. There are a lot of things going on with my eyes right now and I hope to get into see the neural ophthalmologist in May.

I really don’t like that I still hear that doctor when I was first diagnosed. I will never forget it, but I hear it now, as my eyesight is starting to be affected…

Today is Saturday so I pillaged:

It takes me longer to pillage because I take so many supplements! I go see my naturopath on the 21st of this month. I have been telling my Mom that my head is spinning with my disease progression as of late.

I’m slowly realizing how small my life is now! But, this week is a “Go Time.” I have three separate appointments so that means three separate van rentals. We are getting our haircut on the 15th, I’m going for an ultrasound on the 17th, and on the 21st, I am going to see my naturopath.

In February, I have to go to the dentist. I have to have three cleanings a year now. I really don’t like this! My hygienist suggested it at my last cleaning and I said that I would think about it. When I got into the van with my Mom and told her, she told me that my Dad had three appointments a year as well. When I told Sean about it, he told me that health goes south super fast in your mouth! I called the following day and made my appointment.

I don’t have a June appointment yet for 2025 so it’s good that I will have availability that month. I think that I have to have three rentals a month now because I can’t do more than one appointment day anymore. So, three separate van rentals it is!

I remember seeing a Sara Bareilles documentary or something like that where she is renting a place in New York. she was in her kitchen and looked at the camera and said, “Things spill.”

I think she finished by saying something like, “That’s all I got right now.” I don’t even know if it ever became a song but I was thinking about that yesterday. I don’t even know where I was when I saw it or even when it was.

I remembered when I watched it that I thought it was strange that she was moving into a furnished apartment. But I thought about what she said yesterday especially.

Tears were spilling out of my eyes, and there was no controlling it! That seems to be happening A LOT lately!!! I no longer think that my tears are ‘strong and silent’ anymore but rather pathetic.

I will tell you right now that 24 years and AIN’T. NO. JOKE. That’s not even proper English but I can’t believe how much this stinks!!!

Today, while my Mom and me were talking, I looked at her and said that I am staring at a quarter of a century of having MS in 11 months?!

It was more of an exasperated statement than a question but tears immediately followed!!!

I can’t believe this and I’m not OK with it but it is happening and I have no choice but to deal with it. All I know is that I am not OK at 24 years and I can only imagine what a quarter of a century will look like… This is all so shocking!!!