Month: June 2024

I woke up this morning with a start! I have to tell you that is NOT a good way to wake up! I was startled because I thought I was late for an appointment. it was 11:28 a.m. when I woke up and when I realized I did NOT have appointments Leaving the house for the month of June, I set a rosary on my phone and went back to sleep.

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!!!