Month: August 2025

I told my mom that the weather today is more difficult for me. During our routine, I cried twice. Pitiful tears just streamed out of both my eyes and my cheeks! Today was definitely more difficult, but I do NOT need to leave the house until September 17 when we will be fully into the ‘ber months!!!

My Mom went to go pick up the van. This is the final haircut for this insanely horrible summer!!! I have been feeling that the weather is breaking and I’m an able to breathe a little bit better!!!

I think when September starts and I get a little bit more comfortable with the weather outside and just before I freeze death, I will write about it.

This whole time, since January 17 and my ultrasound that produced some not good things. We have been going full throttle and this heat HAS NOT been helpful at all!!! I think that there may be some personal changes at my van rental company, but I’m not sure yet. I’ve never had MS for this long and it’s a lot!!!

I was beyond tired yesterday and had a very difficult time completing our routine. It wasn’t until my Mom gave me my dinner when I asked her why was I so tired?! And then I remembered! Yesterday, morning, Saturday, I was awaked to chainsaws and six people talking loudly at 9 o’clock in the morning. I wasn’t done sleeping! I laid in bed for a while and try to just go back to sleep, but that was not going to happen!

I was reminded of that fact when I asked my Mom why I was so tired. I was so tired because I was not done sleeping! This morning, they had to clean up a bunch of debris because they cut down my neighbor’s tree yesterday because the house has been sold.

My Mom was very sad and she took pictures! She is laying down so I can’t share them right now but I’ll probably share some pictures tomorrow. I am concerned on what that’s going to do for the air quality around my house. I’m sensitive to that now!

But I don’t leave my house more than 24 times a year. Maybe more this past year because I had four appointments each month for a few months now. I will have four appointments in October as well but normally, it’s not often because I am homebound now. I only leave my house for doctors appointments, dentist appointments, and haircuts. I never thought my life would be like this in 1 million years!!

I told my Mom a couple of weeks ago that it has been too hot for too long and I’m not doing well. I read this article yesterday and I KNEW that there was ‘method to my madness’!!! This is absolutely miserable!!!

https://apple.news/As_YCNxc8R8y2Aj5EFJRM5Q

I told my Mom that I am so happy that my central air is fixed because I don’t think I could handle it if it wasn’t! We continued talking and I told her that I haven’t had air for the last nine years, but this is so much more miserable!!!

I guess that I have always had a flair for the dramatics because yesterday, I exclaimed through tears, “This is the worst I’ve felt in my entire life!!!” Because it was. I was just trying to recover from my doctor appointment which now is going to be an every six months thing. I’m just glad with all these doctors that I am collecting, it fits in with my schedule. I have already penciled in the first four months of next year. #MSsucks… 😒😒😒…

I had my appointment with Dr. K today. It was for 2:30 in the afternoon. As a homebound person, that was extremely difficult.!!! I woke up at 6:30 and got out of bed at 7 o’clock. I wanted to get into the bathroom to get ready to go at 10 o’clock but my Mom wanted to sleep so we started at 10:30.

We worked quickly and were able to make it to my appointment on time. (actually, in that 15 minute grace period, we had five minutes left) We got to the appointment at 2:40 but she did not come to see me until 3:08.

That completely reminded me of the time that I was in the urology clinic years ago. Probably 20. That doctor, (I don’t even remember his name) was almost 2 hours late and I was pissed but when he came in, he did not sit in the doctors chair, but right next to me in the patient’s chairs and he said the best thing that I have ever heard in my life of having this disease for 24 years! He had a football players build, maybe wrestlers because his ears were a little cauliflowered. He looked at me and said with a straight face, “MS sucks!” I was so surprised at that statement, but even then, I knew it was sucky, but I did NOT think it would be THIS sucky!!! I agreed with him then, but I had no idea it would be like how it is now!!!

My Mom took Michigan Avenue the whole way and it was freshly paved so it was wonderful!

Gettting through the hospital and into the elevator was a breeze and my Mom talked to the young man who had a broken leg and his dad was pushing him in a wheelchair.

We were in a hurry and I thought my appointment was on the ninth floor. My Mom did not ask at the front desk. She walks ahead of me and I learned that with her red shirt, it was easy for me to see her. She also had a white zippy that I used to wear, and the contrast made it easier for me to see.

She called back to me and asked what clinic we are going to. I told her Urology, but she didn’t understand that. But then I said with a U and then she got it. There was someone standing on the side of the hallway, who interjected that the urology clinic is on the ninth floor. We thanked her and kept hustling!

I have to think about things like that now. With these appointments in the middle of the day, it is so busy that it’s difficult for me to focus on her. Today, getting into the elevator from the parking structure was extremely scary and I will think about that and probably write about it tomorrow.

So, Dr. K comes in and asks me if I am having any problems and I told her that I have not and I told her that recovery took eight days. She apologized for that and then she told me that in six months, I need to see you again for an, “in clinic peek into my bladder.”

So that’s a thing now. My bladder. 24 years in, this is a lot to process. I have more things to write about my time there, but I am about to crash. I was so nervous about this appointment and I’m so glad that it’s over.

This evening, it took me a SUPER LONG time to eat my dinner!!! I eat overnight oats infused with protein, saltine crackers (because those melt in my mouth), and chicken Stovetop stuffing.

in this heat, I drink both my breakfast and lunch. I drink my breakfast all year round though. I have found that I at least need to eat one meal a day. I just can’t believe it took so long because it’s 80° this late!!!

I posted this article on Facebook and I sent it to Sean and my Mom.

https://www.mymsteam.com/resources/ms-and-heat-what-you-need-to-know

I’ve been getting these emails for the past 24 years and now, I have the time to read them. I probably should have read them 20 years ago!

This is my brutal season! The most brutal so far!! I have been telling my Mom about it, but I can’t believe that it’s STILL lasting!!!

I’m leanin’ in! There is nothing else to do. I have never liked this statement.‘ ’It is what it is’ but, it is what it is and it sucks to suck!!! In this heat, it sucks even more!!!