Author: Jen Rios

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!!!

Other Organs and Stuff…

I figured out in December 2023 that I am technically homebound. I knew it before then but that’s just MS progressing. I am still trying to wrap my head around it!

But I think things have started to get serious now…

You know, when doctors want to call you on Sundays. I messaged her letting her know that she should call my Mom because I will be sleeping. I gave her the best times to call.

I am trying to treat this like when the doctor told me that Sean may have had ‘brain bleeds,’ or just a normal variant on his MRI in NICU. He told me that the Wednesday before Thanksgiving, and I had to freak out until the following Monday!

Everything was normal for Sean and I’m hoping that it’s the same for me. I told my Mom that if I need anything medical for this year, to let my doctor know that I have June, August, and December available; otherwise it will have to be next year.

I have doctors appointments all of the other months for this year so far. I’m trying not to freak out! This doctor told me that I have had MS for so long that is just pushing me into perimenopause. I have known for many years that after having MS for so long, it would start affecting my other organs and stuff…

Fat Lotta Good

When I woke up this morning, my Mom told me that I had curly hair and she snapped a picture:

I have wanted curly hair for my entire life! I have it now at 42, fat lotta good that does me! The woman who cuts my hair asked me last March I think who I got the curly hair from. My hair started to curl then. My Dad had curly hair and my oldest brother and my youngest brother. My second oldest brother has wavy hair, but my brother Jimmy and me just had straight hair.

I looked at my hair and I thought of “Lambert the sheepish Lion” It was a short that we used to watch on the Disney Channel when we were kids. I think I may have to look at Disney+ to see if it’s there.

Aafter I got into my living room, I pulled the comb through my hair and made my hair a puffball just in time to put my hat on. I’m totally not used to having curly hair!