Author: Jen Rios

Ok, I had my 8 am CT. That was rough on me to wake up so early, so I just did NOT go to bed. I remained sitting in my chair all night. That was a little bit brutal but I know I wouldn’t be able to leave the house if I had slept my bed because waking up would be too difficult!

Right when I got home from the CT, results started showing up in my MyChart and stupidly, I begin reading them as if I could understand what they said?!

This is all getting to be a bit much with having MS for 24 years so I googled the words I could not understand. I think that I am startled at how different a CT was and the fact that I have never had one before.

Halfway through the CT, she injected me with contrast. It was hot?! Jeanette (the CT tech) told me that it would feel warm. And it was shocking to feel said warmness INSIDE my veins?!

After reading the definitions of the couple words that I looked up, that Slim Fast jingle popped into my head:

I’ve decided that I am going to ‘give it a week’ and wait for my virtual appointment with my urologist and have her explain what’s going to happen now. Because things will have to start to happen now… #MSsucks 😒😒😒…

I woke up this morning and looked at my phone. It was 9:48 an.m. and my Mom had come into my room to move my wedge. Apparently, I looked at her and I taught her that I needed to get out of bed at 10 o’clock. I did not even know that I did that until about 5 o’clock this evening. My Mom reminded me of it. It sounded kind of familiar.

Delirium has sat in. It was AN EXTREMELY DIFFICULT appointment so early in the morning!

I have one more appointment on Wednesday. It is for a haircut. And my Mom is also picking up my supplements for the month.

Today was recovery day #1. I am not sure how many days I will need, but I definitely needed it today!

I cannot speak about my CT scan yet because I’m still processing it. It was a whole bunch of new stuff for me and I can’t help but be nervous about what will be coming down the pike in the future?

I am still rocking my pomegranate chapstick because was cold again yesterday. However, I have made the executive decision that once this ‘bag-o-chapstick’ is completed, (which I started today) then I will use my Cucumber Mint! That’s something exciting to think about!

I pillaged in silence again today. That really helps me to concentrate and keeps my mind clear. This weather is completely killing me! I am looking at my appointment for Tuesday morning. It is for a CT scan and it is at 8 o’clock in the morning.

I’ve looked at the directions and I think I am NOT going to go to sleep. I will just hang out in my chair and then my Mom will get up at about three in the morning to get me ready to leave the house by 7. Sean will meet us because my appointment is at 7:45 downtown in case he has to transfer me.

I am a little bit concerned about my chapstick? It’s supposed to be warm that day, but I’m leaving the house super early so I think I can continue wearing my Pomegranate. My Spring/Summer chapstick is all ready and it has been since March but it has not been warm enough for me to wear it yet. This weather is crazy!

This is the earliest appointment I have had to date. I went to the dermatologist at 10:45 in the morning. We made it. I hope that we will make this one as well! I have never had a CT scan before.

I have been thinking about my last neurologist. He retired in 2016 and he had the best and warmest handshake because his hands were so big compared to mine! He always reminded me of Lex Luthor:

I remember the first time I saw him, he got his little handheldlight and got all up in my face! I remember the first time, I kind of laughed like, is he for real?!

I was telling my Mom that after I just saw my new neural ophthalmologist. I told her that I was caught off guard by Dr. Elias getting all up in my face and I kind of chuckled a little bit. Then I told her that he did it 16 more times. She was confused by that statement and she asked why he did it 16 times. I told her that he was my neurologist until 2016.

My Mom took pictures of my appointment with my new doctor:

I did not chuckle when she got all up in my face because I didn’t have to ask myself if she was for real because she was and that’s how it is now. I’ve been having these exams for a long time!

I had my neural ophthalmologist appointment today. I had to expected for my Visual Field Teat to be terrible because I know what I can and cannot see. I can no longer have my Mom or Sean stand behind me to my right. My brain cannot make sense of that!

I have always said that my right side is my ‘poop side’ because I discovered that I have osteoporosis in my hip in 2024, I tore my ACL in 2000, and then I tore my meniscus in 2017. All on my right side!!! it’s totally my ‘poop side’!!!

I was lpso nervous for this Visual Field Test! The last time I took one, Sean was seven. I was very nervous that I wasn’t going to see all of the blinking lights. A nurse named Ashley helped us and administered the test. She told me that I was doing a beautiful job. She had red hair!

After my Visual Field Test, I had an appointment with my neural ophthalmologist. First, a nurse came and gave me a battery of tests and then after that, I think she was a resident. She did a bunch of tests as well!

Finally, my doctor came in and they did tests together on my eyes:

My doctor, who is the replacement for Dr. Skarf who retired, told me that my eyes had stayed the same. I couldn’t believe that?! I see so much worse! I see my optometrist in July and I will ask him about the battery of tests, the nurse, the resident, and she completed.

I thought that my checkup was going to be terrible because it had been so long had that test administered to me. She wants me to see her again in two years.

There is evidence of disease progression however. My Mom had to push and hold my back up so I could put my face into the box. I told my Mom what it was like looking in there. It’s like staring at Willy Wonka and the Chocolate Factory when they are with Mike TV and he gets sucked into the television. Everyone is wearing white in the room and the room itself is white. I stare into that little box that is white and that’s what it makes me think of.

I used to be able to take this on my own without someone holding my back, but it’s been almost 25 years now…?

My Mom picked up the van, my alarms are set for tomorrow, and I will twilight sleep tonight.

I have my Visual Field Test tomorrow. It has been a long time since I had one of those! I was supposed to get it last year, but the doctor changed it to be in Troy at 2 o’clock. I live in Dearborn. That is not happening. We are going tomorrow at 2 o’clock downtown.

I think that I am nervous. I already know that it’s going to show not good stuff. I just don’t want to see how bad I see. I will tomorrow though.

Today during our routine, my Mom told me that she was, “Tired, and grouchy too-” I cut her off immediately and told her that I am not grouchy! She told me that I was ‘short.’ by that, she means that I am terse. If that’s the impression that I’m giving off…?

She was transferring me and I said, “Chronic illness is…” and then I started to cry. I don’t think I even finished that statement. I don’t even know if I knew what I was going to finish it with. Difficult maybe?

But, I can’t think about that too much because my Mom is getting the van tomorrow night for my vision test on Wednesday. I never thought that my life would be like this, but regretfully it is.

It has been miserable all day long! I woke up and got out of bed, and my quads and my butt muscles were spasming so much that all I could do was just kind of grunt, “Oh!” Oh, this rain ain’t no joke!!!

After I was up a while and had my prayers done, my arms, and hands stretched, the spasming started to lessen.

The rain continued as I ate dinner and the spasming was in my thighs now. So, my legs have been hurting all day long! I see that it’s not going to rain tomorrow, so I hope that makes me feel better but at this point, it’s NOT much ‘better’ anyway.

A Facebook friend, posted this, and I’ve thought about it a lot today… We both have MS.

I don’t think that I am pissed about it and I don’t think I have ever been pissed about it. It’s unfortunate for sure and not how I wanted my life to turn out but I’m handling it. There is no other way.

I think that’s all that can be said about this mother b*tch of a disease. I was told that I am not dying because of this diagnosis, but I have to live with it and that is proving to be so difficult!!!:

I think that I have reluctantly accepted this because there is no other way.