I originally was going to speak about the fact that I know I have four appointments in July. But then Sean came over and he brought food and we watched Nonas:
My Mom and I saw it before we got our haircut and the woman who cuts my Mom’s hair, told us that it’s an actual restaurant and that you can make reservations to go there. And they’ve expanded the menu:
I will talk about my grueling July schedule just like my April schedule was.That was crazy as well. This disease is progressing and I don’t know what to do! I really liked watching this movie with Sean today though!!!
I thought about back when I used to see my neurologist once a year. I am so far from that now!
I cannot believehow much I am racking up these doctors appointments! And they are ALL import! For example, my July appointments have just gone up to four. I have to get my teeth cleaned because I go every four months now, I am going to the optometrist because my eyes are definitely a thing now!, we will get our haircut because my hair is so short now, and now I have that surgery on July 15. A fellow MSer on Twitter told me that they have had that exact procedure and it’s no big deal. That definitely brought me relief!
I cannot postpone any of those appointments! Even though my disease is progressing beyond what I ever imagined, I’m still handling it. That’s what my Mom says. I don’t like it one bit, I never thought it would be like this, and it’s a little bit scary.
I told my Mom that I cannot get it through my head that I do not need to leave the house until June 18. I keep waking up, startled, and stressed out that I need to go somewhere or have an appointment or something.
I think I have done that for probably the last six months. It takes about a week for me to realize that I have already completed the appointments for the month. That’s a little bit scary too.
Last Wednesday, I asked my Mom to put a shake into my Henry Ford cooler bag and to take a picture of it. Now let me ‘splain ya:
This is the cooler bag I was speaking of that is 23 years old and in November, it will be 24. That’s fact is. crazy to me!!!
You see, the reason I have this cooler bag is because Sean was in NICU for 31 days and I was breast-feeding or at least attempting to. Because Sean was a breast-feeding baby, they sent me home with these cute little bottles that had caps that I could easily hook up to my breast pump machine and they would administer that to him in his feeding tube in his nose when it was time for him to eat.
The reason that my Mom and I laugh about this bag is because I told her the story of when I was getting into a crowded elevator, bringing Sean milk.
I think first that I need to explain that the hallway that was being tiled NEVER got finished the entire 31 days that Sean was in the hospital. It’s finished lnow that it is 23 years later, but…
I think there may have been some kind of contract dispute or something story just kind of adds to that assumption:
it is November 2001 and we were still crowding into elevators like it was safe. I was just coming in to see Sean so it was early in the morning and the elevator was filling up. As is the habit of getting into an elevator and then to turn around to press the button. So, I did that. I had this little cooler in my hand. I think they were about six little bottles of milk for Sean.
so, I get into the elevator and turn around, and this other people were getting into the elevator at the same time and a man who was dressed like hewas a trade worker, possibly working on the floor.
He said something like, “Oh look, they gave you a nice little lunch bag!” Kind of sarcastic and before he could turn around and the elevator doors would close, I just said in a monotone voice because I was tired and my son was in the hospital, “It’s actually for my breastmilk because my son is in NICU.”
My Mom and I laugh because I can still see that guy with his embarrassed look on his face before he turned around just as the doors were closing. I go to that hospital all the time now and we were just there and the floor is totally tiled now. The elevator that we were using is no longer in service and this fact feels strange for me because I used thatelevator every day to see Sean for 31 days!
My Mom and I talked to Sean yesterday as he was coming home from work and my Mom told him that I was watching You’ve Got Mail on Amazon prime:
He said,“You know, I like that movie! I mean, it’s no Leap Year, but I like that movie too!
My Mom was putting on my compression socks and I just chimed in, I ‘love how that sounds!’ I have watched both of these movies too many times to count and I guess Sean was around for it!
It seems as if Big Brother is working overtime because look at what showed up into my feed today! This made me laugh! I didn’t know anything about the You’veGotMail stuff.
Forrest Gump would have been a completely different movie with Dave Chappelle in it!
I have always been fascinated by the Cliffs of Moher!!!
Sean stopped by on his way home from work because I had ordered him a rain jacket. He came by to pick it up and my Mom heated up tamales that we had in the freezer from my last appointment downtown. My Mom reheated the tamales and she cut mine into bite-size pieces and put it in a bowl because that’s how I eat now.
She brought the bowl over to me and she brought one tamale with the husk off for Sean.
As soon as the tamale smell hit my nose, I said with fondness, “Tamales always remind me of my Abuela!”
I wasn’t expecting to hear what Sean said at all, but I guess that it’s true! He said, “Me too!” And we both started to laugh! My Mom laughed when I told her as well!
Last night, as I was getting ready to go bed, that means that I was seated parallel to my bed and my Mom helps me stand up and out of my chair and then I lay down in my bed. I sat there, and I just said, “My knee hurts.”
That is just a ‘matter-of-fact, statement for me now, eight years after my second surgery. Well, in two months, it will be 8 years. I remember when I used to gasp and cry when my knee popped out.
I don’t do that anymore. It just hurts. It was really throbbing last night and I think I did that to myself because I reposted a post talking about Jumanji 2, that’s what we watched yesterday. And that post, I spoke about my knee throbbing. We watched all of it except for the last 25 minutes. We watched that today.
I am not going to jinx it and say that my knee will be fine tonight because I don’t know if it will be yet… but I still can hope 24 years into this journey… #MSsucks!!! 😒😒😒…
I saw this post on Facebook today and I have seen it many times since I’ve joined Facebook and that was 18 years after I had my son via C-section. He was 32 weeks gestation when he was born and he weighed 4 lbs. 11 oz. and he was 17.6 inches long. He was eight weeks premature and stayed in the hospital for 31 days after his birth. The hardest month of my life!!! He’s 23 now.
Days afyer I gave birth to him, I was told that I was walking too slow and I was hoisted over someone’s shoulder to speed up the process. That’s the kind of pain that you just suck air in because it hurts too much to breathe out! A few of my staples popped, and I have the scar to prove it.
Back then, I was told that, “It’s just a scratch!” to which I always responded that they cut through my guts to get him out of my body!
Seeing and reading this post today reminded me how much of a big deal this actually was:
C-section. It’s the only major surgery where seven layers of your body are opened—and just six hours later, you’re expected to be on your feet, caring for another human being.
While society often normalizes it, a cesarean is a serious abdominal surgery that comes with real risks: infection, blood loss, and complications from anesthesia—and yet, moms rise.
If you became a mother through a C-section, know this: YOU ARE STRONGER THAN YOU THINK. And that? That’s something to be damn proud of. ❤️❤️❤️
I think the moment I have been waiting for for over a month is finally here! I think my air conditioning is going to be on all the time!!!
now it will be time for me to hole up in my house because my central air is fixed finally!!! After nine years?!!!!
It has been completely brutal having the AC on during the day and heat during the night but looking at the upcoming forecast, it seems warm enough to have AC all the time!!!
