Author: Jen Rios

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!!! 😒😒😒…

I started this chapstick on January 1. I couldn’t even last three weeks. Now it is less than three weeks and I have changed over to Vanilla Bean.

I changed over midday. I don’t like doing that but I have two tubes of Vanilla Bean so if it’s cold for too long…

I need to elaborate on how Sean was ace!!! Me and my Mom are the same height! Actually, she is shorter now, but I don’t bring that up anymore.

Sean is taller than both me and my Mom, and he is only 23. My Mom and I had so much difficulty with my bone density scan last January so she thought because we had not had an appointment at this place yet. Or at least I have not had one since becoming so extremely disabled!

She was correct in having Sean come with us! He was able to lift me onto the table with ease! I was so happy that he was with us, because transferring me back into my wheelchair was so easy with him!

I think it helps that I am losing weight even though I am not trying at all. I will be weighed again in March. Sean is definitely ace and we stopped at Bob Evans (his favorite restaurant when he was a child) to get him some dinner because he was so great!!!

I had my ultrasound today and Sean was ace!!! As I was laying on the table, I looked at the ceiling drop-down tiles and realized that I have been here before. 25 years ago!!! I had my ultrasound to find out the sex of my baby 25 years ago!

I told that to Sean and the fact that his dad giggled when he found out that we were having a boy.

As we were there, Sean told me that he did not realize how much he has been in that medical building before! Fairlane was where his pediatrician was located. I think they moved to where they are now when Sean was about 10 or 11.

When I was in college, Sean went to doctor appointments with my Mom and Dad all the time!!! My Dad would go to the cardiology clinic which is right next to the Pediatrics clinic. Sean’s godfather’s mom worked at the cardiology clinic. We would see her all the time!

Well, they changed the building again. They actually lopped off the whole pediatrics Clinic. It looked so weird to me!

I thought that I was going to where I had my lamaze classes when I was pregnant but instead, I went to the radiology clinic where I found out what Sean was. I like the familiarity of the place! I have been going there for my whole life and I guess Sean has as well! I guess I am a lifelong Dearborn resident and if it ain’t broke…

I think that my doctor wanted me to schedule an ultrasound because I think that I have had MS for so long that it is beginning to affect my organs. The tech, Olga, was beyond wonderful, and she took a whole lot of pictures! She told me that the doctor will contact me and information will be on my chart.

Well, my visit is in MyChart, but the doctor has not commented on it yet. Olga said that would be in the next couple days. Maybe Monday?

I am going to cancel my appointment with Dr. Clark because it will be too cold for me and reschedule when it’s not super cold! I will just continue taking my supplements as I have been. Dr. Claus will dose me when it’s NOT so cold!

So, it looks like I am done for January after all, and I am exhausted!!!

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…