Month: May 2025

I pillaged today.

I remembered to use my Dragonfruit Lemon chapstick today. It still reminds me of driving my brother’s car! I think that I will find that post…

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!!! 😒😒😒…

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!

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’ve Got Mail 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!!!

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!

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!

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.

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 just realized that I did not kind of explain what surgery I am going to have. I’m a little bit distraught. Dr. K gave me this explanation and it completely made sense to me so I need to give all of you a further explanation. My Mom asked how big my calculus was in Dr. K. explained that it’s about this big:

Wait. WHAT?! That is inside of my bladder?! And it’s going to take two hours of zapping for it to be removed. I hope it works! Yep! I MS STILL sucks!!!

So, after 24 years, it is starting to get serious for me and my MS journey. I’m going to write about it here so I can keep it all straight in my head, and then I will have a timeline and tangible proof of my MS journey.

We just got called and subsequently scheduled my very first MS-related surgery and it took me a moment and I felt strange but then, I bawled. Twice. I think I need to backtrack and explain how the surgery came to be scheduled. It will be five months of appointments for this one! This is so big now!!! I never expected it to be like this in 1 million years!!! But this is where I am now and it seems my Mom is with me too.

I had an ultrasound on January 17 where I discovered that I have a calculus in my bladder. I didn’t know what that was or didn’t even understand what was happening, but after my April 9 appointment with my new urologist, Dr. K, she explained things to me and wanted me to have a CT scan which I had at 8 o’clock in the morning on May 13. That was a brutal appointment to get to!!!

I had my virtual appointment today (May 23) with Dr. K and she explained that urogram to me what the next steps are. And here it comes:

My Mom sat next to me as I held my phone for my virtual appointment. Dr. K explained she wants to handle this with the most minimally invasive procedure possible. She explained how the surgery would work and that two people to schedule. They called my mom now. She handles all of my appointment making. We did that specifically because depending on the time of day, I may not be with it.

My Mom got names and phone numbers of who was calling before the end of our appointment. Lynda called shortly after and rescheduled the surgery for July 15. It has a long name. And it’s going to take one to two hours.

Then she made a follow up appointment to the surgery for August 13. So I discovered my calculus in January. Had appointments for it in April and May and now I will have them again in July and August.

So this is all new to me and I still have my annual neurology appointment and optometry appointment that are scheduled for later this year (July and August) . I already saw the neural ophthalmologist. We will talk about her findings with my optometrist in July.

I think that I bawled after we made the appointment for the surgery because for my entire life consists of only three surgeries I have a C-section sandwiched between two knee surgeries. But this one is my very first MS related surgery! The only reason I’m having surgery this time is because I have had MS for 24 years! #MSsucks!!! 😒😒😒…