Author: Jen Rios

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!!! 😒😒😒…

Yesterday was rough and I did not even post about my lip! I could feel it healing, but after having MS for 24 years, my body takes a long time to heal from anything!!!

Yesterday, I still had to just put Chapstick on 3/4 of my lips because it was tender and still flaking a little bit. But this morning, I decided to push it a little bit!

I think it was the first two applications today where I blotted my upper lip because it was so painful for the last couple days; but then I decided to bite the bullet and I just smeared chapstick on both of my lips! ‘It hurt so good!’

I called to my mom, that I can normally apply my chapstick because my lips aren’t flaky anymore, it hurts so good! I actually said that as she was in the kitchen, “It hurts so good!”

My Mom actually asked me if I really said, ‘it hurts so good’? I told her,‘yes’ and she continued washing dishes and said almost under her breath, “That’s your father’s line!” And she chuckled. That chuckle warmed my heart!

I responded by calling, “Yes, it is, and I have adopted it! I can hear Daddy saying it, I can actually SEE him sitting at the table in the dining room, saying it!!!

Because my upper lip is no longer flaking away. I can just smear chapstick on the whole lip. The reason that it ‘hurts so good’ is because there is still a slight cut on the inside of my mouth by my teeth. That hurts just a little bit. and so ‘it hurts so good’! But my Mom‘s chuckle warmed my heart because I had so many fond memories that I’ve thought about it since my Mom chuckled this afternoon.

I thought that it was familiar that mouth sores heal quickly. I must tell you that my mouth sore is not healed, but it is healing. It’s flaky, flaking, and flaking off.

I must tell you that when it happened, I did not swear, surprisingly. Instead, I gave a very unflattering, “Ugh!” it was too loud in the silent room that I was in. It was still dark, and I could feel a ‘goose egg’ on my lip, and I thought that I tasted hint of blood for a moment.

My Mom took a picture of my mouth last night and the blister had popped, and it looked bruised:

I snapped this picture right when I woke up this morning:

There was no ‘goose egg’ so it seemed promising to me! As my Mom and I were completing our routine, skin started flaking off and it was brown. That’s so gross! Dried blood! I took this picture just before I ate dinner today:

You can see my Mother’s Day balloon in the background of this picture and you can see the prism in front of my left eye. The inside of my mouth is looking a lot better! It’s actually feeling a lot better! I’ve transitioned fully to my cucumber mint chapstick, even though it’s freezing outside. It will eventually be super warm and unbearable for me.

My Mom is picking up the van for our haircuts tomorrow so it’s ‘go time.’I am already gearing up. Once I leave the house tomorrow, I will not need to leave again until June 18. The past three months have been totally brutal but now they are over and I am relieved that we were able to get it all done!

So, this morning, I dropped my phone on my face. On my mouth!!! I snapped this picture once I got into my living room:

This one hurt a WHOLE LOT!!!

I waited until I had taken my detox and Ceylon cinnamon and had my Mom take a picture so I could see the inside of my mouth because that was really hurting!!!!:

It took a bit to even think about putting chapstick on. I tried to just smear it on my lips like I always do. Yeah, that wasn’t happening!!!

DO NOT SMEAR!!! BLOT ONLY!!! I could put chapstick on my lower lip with no problem. I could only do to left side of my upper lip and then the right corner. I blotted the puffy part of my lip:

I wonder how long it will take to heal?

When my Mom was putting my legs up in my chair, I was just sitting in my chair and then I tasted a mouthful of rust. I still remember reading about the young boy protagonist who was concentrating really hard and he bit his lower lip until he tasted rust. I wonder what book that was?! It seems as if the blister popped.

As a rule, mouth sores usually heal pretty quickly! Let’s hope because I have a new chapstick to use but NOT on my hurt lip! I want to just smear it on!!!

Yesterday, I noticed a greenish bruise on the inside of my right arm, I couldn’t for the life of me remember where it came from?!

Oh yeah, Janette (the CT scanner tech) searched both of my arms for a good vein to put the contrast in. It was the CRAZIEST feeling!!!

I remembered my first blood drive at my high school that I was eligible to donate. I made the signs. I was very excited!

The woman drawing the blood that day took one look at my veins and just said, “No!” She told me that if she can’t see my veins, I can’t donate.

I got an, “I Tried” sticker. I was SO BUMMED but fast forward less than a year and they don’t WANT my blood anyway! I get blood drawn often at the hospital but I can’t donate having MS.

I pillaged in silence again today. I’m really diggin’ it!!!

I didn’t drop any pills. It’s technically ‘go time’ on Wednesday but I’ve already had so many appointments this year so far so this feels weird!!!

Right now, I just have to scheduled appointments for June but I have a virtual appointment scheduled this Friday, so that might change…