Author: Jen Rios

This morning, well, this afternoon, as I had just sat up in my bed, my Mom walked over to my bedroom and waited. When I sit up in bed, usually, she turns the light on. I signal that to her by just giving her a thumbs up with my right hand. Because talking when I first wake up is NOT an option.

Today, as I was adjusting my bed to sit up, she turned the light on just as I was readjusting the top part of my bed with the controller so I could recline a little more to make it easier on my hips. My right hip because that one still hurts a little bit. But it’s actually feeling a little better because I have been on supplements to address that since February 21, 2023. I just mumbled to her, “ I feel the same.”

I can’t believe that it is ONLY June, and I am so affected by this heat! I see my PCP on Tuesday. And my last appointment, she wanted to see me in three months. I guess I am that in-firmed now. it kind of startled me when she said that in March.

But I had already made my appointments for the year and she could see on her computer that I will have already seen my endocrinologist last month. But I do not need to see them again until February 2026. I need to get weighed though. I think the last time I got weighed was last March. I think there was something going on with the scale or something.

I asked my Mom for the picture of my leg from my compression socks. I guess it’s like this until September:

September is SO far away and there’s SO MANU days of feeling miserable until then!!!

Today I did not wear my contacts. I needed to rest my eyes because I was so stressed yesterday. My Mom complimented me on the fact that we got everything done, but I told her that I was barely functioning the entire time!

Last night, when my Mom took my compression socks off, it was evident that my legs had swelled. She took a picture of the rubber indentations on my leg from the socks. I had experienced that once before if few years ago when I first got size one socks. She took the picture on her phone, so I don’t have it right now, but I will post it tomorrow because I am very sure that I’m going to feel pretty much the same way!

Today, I specifically talked to my Mom about the ways in which my body has stopped functioning in the heat! I told her that I am going to feel this way until September, maybe October. But I did tell her that. this recovery is a bit different. It kind of scares me: but I am so drained!!!

Today, I left my house and got my haircut and my eyebrows waxed. It was so difficult with the heat. I have been going to the same hair salon since I was 17? So, I know the place. It was still difficult You see, in the heat, I can barely see!

I was the last one to finish after my Mom and I paid Christina and told her about our July appointment. It will be July 17. My Mom asked if I needed to go away from the door because it’s so warm. I shook my head and stayed where I was. She opened the door and I got into the van right outside of the front door.

Once I was belted into the van, and we were driving away with the air-conditioning blasting, I told my Mom that I can’t see! That’s the one thing I really hate about the heat, if I get too overheated, my vision starts darkening.

When we got home, I opted to have my normal dinner, because eating pizza is too warm! As I was getting out of the van to get into my house, I let my Mom, “You know that I am barely functioning.” It’s quite startling for me, but after 23 years, I don’t know why I wouldn’t think it’s like this because it’s terrible! I told my mom that I am miserable!!!

Barely functioning or not, I still got my haircut, and I have two eyebrows. My eyebrows don’t grow in as much as they used to when I was 17 and I now have a short haircut. That is something that I never thought I would have, but I do because it is easy.

Well, today was a little milder than yesterday. Yesterday, I had a pounding headache. The day before that, I woke up with the bloody nose. It’s a horrible way to wake up!!! I am not sure which is worse, the rust smell that I have to blow out of my nose the first thing in the morning or the crimson colored tissue when I pull it away from my face. Both instances turn my stomach!!!

Today was a new one. It was about 90° for most of the day. It was at 95° where I had a pounding headache. But today, I was nauseous. My Mom kind of looked at me a few times and asked me if I was going to throw up. I just and shook my head with a slightly worried look on my face. That’s definitely anew one!

Tomorrow is “go”Go Time.” I was talking to Sean on the phone yesterday and he said that Wednesday (today) is supposed to be the hottest day on record so far. I thought that was great! I am leaving my house. More stuff to be nervous about! If it’s supposed to be so hot, I wonder how my body will react. I told my Mom that I have never had MS for this long, but I must tell you that Summer of Year 23 is DEFINITELY WAY, WAY, WAY worse than Summer of Year 22 so far and its only mid June?!!!!

I just thought about this at 2:56 in the morning. After our very first 95° day, I think it’s best for me to post now when I’m almost asleep because during the day, I am barely coherent. I took an extra ibuprofen 800 because I had a pounding headache! I’ve never had MS this long, I told that to my Mom the first week of June. and two weeks later, it feels like I’m going to die! But I wanted to post this story. because I read it to my Mom a few days ago and she commented that I read it really well.

That’s a thing now. speaking is not easy for me at all. I am surprised at how much work it takes for me to say things sometimes! I just communicate via text now. I will send this story to my Speech Pathologist as well. she is NOT my Speech Pathologist right now because I am speaking well. I think I may ask her for the specific reasons why my voice trails off when I speak. like, I lose my breath to get it out. My Mom hates it!

I am surprised that it has gotten like this now. I never expected MS to be this terrible!!! But, it really is!!! here is the story:

Clicking on the picture will not open the article but I put it here because I thought it was cute:

https://apple.news/AyENEIsBhSBisBtf5iBGEhA

11 years ago, when I started this blog, I would have added a hot link to the picture, but MS is more than me, disease now! I think I may have written this, but it’s a mother b*tch!!!

I checked the forecast today and it looks like I’m NOT having the uncomfortable weather anymore:

I am no longer uncomfortable; I am miserable.

Sean stopped by yesterday and I had him try one of my nutrition shakes. Working in irrigation, has caused him to drop weight quickly because he is walking 6 to 9 miles a day in the heat.

I told him about my nutrition shakes, and how my nutritionist told me that I should switch to that so I can get the needed nutrition from it because I don’t move all day long! I told him that the shakes keep my weight stable.

I told him that he could add it to his diet to help with the extreme weight loss that he is experiencing. He took the shake, shook it up, and drank it in two gulps. He told me that it tastes like, “It tastes like melted ice cream!” This morning as I drank my morning shake, I thought of Sean and I smiled. I never thought about it like that before.