I called Sean today on his way home from work. I asked him how his workday was and he asked me how things were where I’m at. I told him that I am using my Salted Caramel chapstick today. Then I promptly told him that it is my least favorite. He laughed at that and said that I am just forcing myself to suffer through this fall chapstick. Then I started to laugh, but I told him that this is the first time this Fall that I’ve used it and somehow it is a little bit ‘sweeter’ so you know what song popped into my head right then?!:
Author: Jen Rios
Vanilla Maple
Today, I used my Vanilla Maple chapstick for the first time in a long time! I forgot how much I really liked this flavor! I saw once on Amazon that they had a four pack like they have for my Cucumber Mint. But I have more Fall chapstick tubes to go through until I think about going completely Vanilla Maple. Maybe next year or the year after I think…
“Nothing is the Same.”
A few nights ago, my Mom and I were talking about music and she couldn’t understand why I listen to sad music all the time. She told me that she likes, “Upbeat music.” I just looked at her and I said with the straight face, “I can’t handle that anymore.”
She looked at me when I said that, and she just kind of understood I thought. I think of music in the past tense now. I have a soundtrack of my life and what I was doing when the songs came out. But now I just live in my memories. I told my mom a few days ago as well, “Nothing is the same.”
Because REALLY nothing is the same anymore and I don’t think that I really was expecting this. This is an upbeat song that I did not hear until my 20s that I post on my blog every October but now that I am in my 40s and my disease has progressed this much, sadly, I don’t think I can handle it anymore…:
I didn’t watch Hocus Pocus today. I think I’ll watch it during the weekend…
October 2024 Faves
I have been listening to this song a lot and my mom does not understand why but I’m feeling kind of melancholic as my disease progresses and the weather gets colder… here are my tunes of choice:
I absolutely love the lyric, “Tug at my seams”:
Melancholy or not it is October 1 and I have a movie to watch!!!:
Mouth Sores OR Stress
I have never had MS for this long, but I think I am coming to understand something now because I have a canker sore again!
I thought about it today because it hurts but this is just after I had two people with their hands in my mouth last week. But I think it’s a stress thing. That’s how my body is reacting to stress. This totally stinks because it hurts and I use the naturopathic remedy of thieves oil, and man, that’s intense!!! But, I think it’s numbing my mouth! So then it doesn’t hurt. My Mom is calling Yanna tomorrow to get the directions on what we should do. She was the one who suggested it the last time I had a canker sore.
My Mom says that I keep my mouth clean and she doesn’t understand what’s going on and I just told her that it is stress. That totally stinks, but that’s what it is!
‘Enough Meat’
I remember reading somewhere when I was probably in fourth or fifth grade. I think it was a boys adventure story or something like that. That’s something I wouldn’t want to read; but for school, of course, I would read it! I think it was the same story where he bit his lip until he ‘tasted rust.’ I love that description for blood!
I liked this other description as well but I can’t remember what he was describing but it said something about there was ‘enough meat’ there and I don’t know what they were talking about but I’m borrowing that phrase for my blog post.
I have made the executive decision to just store the rest of my pomegranate chapstick until January. I originally was going to check it when there was more chapstick there, but I think I can use it to its fullest so I will just seal this bag and put it under my remote controls in the box on the table that sits by my chair:
There is more than one day here and on October 1, I have to change over to my Pumpkin Spice xchapstick. I’m liberal in applying my chapstick, but not THAT liberal!
Tiring
I pillaged today like I do every Saturday:
It takes me over an hour to pillage each week now. It is tiring. Beyond tiring when yesterday was ‘go time’ which in this case, that’s what happened. but it’s done and I go back to see Dr. Clark on October 16. He probably will change my supplements again!
I’m really NOT digging this disease progression but I saw the pain clinic yesterday and I am getting a new tens unit and that makes me happy! This doctor wants me to get another x-ray because I haven’t had an x-ray since 2019. I will call the lab on Monday and I think that I can go in before we go to the Cidermill on October 17th.
But I remember the last x-ray I got at Henry Ford, it was in the emergency room downtown, and the doctor could not believe that I had a hardware in my knee! I told him that I had ACL reconstruction in 2000 and they are ‘metal buttons.’ It was strange to tell that to a doctor I must tell you!
Chanklas
I had a memory last night, and as my Mom was getting me into bed and putting my feet up, I told her about it. I asked the question, “Do you remember when I was like 10 and I was at Kroger with you and Jimmy and we heard that ‘Jennifer’ song that Abuela used to sing to me?!”
I remember walking down an aisle toward the milk or the meat or something in the back of the store, and we heard the song that my Abuela used to me ALL OF THE TIME!!!
My brother, Jimmy and I were singing it, and I was so shocked! At that point, my Abuela had been dead for a couple years, and I looked at my Mom, and I said, “I thought Abuela made that up!”
She would sing my name, and then just, ‘la la la la la la la la.’ This song came out in 1968 so of course I would NOT know it!
So, I asked my Mom that not thinking that she would search for the song on her phone. She remembers my Abuela that song to me too! But then she started playing the song. I was totally shocked at how quickly I began crying!!!
I could hear my Abuela singing that to me, smelled burning tortillas in her kitchen, and hear her Chanclas on the floor, and she shuffled around in the kitchen. She had really bad Bunions so her chanklas were just on half of her foot, and her heels hung out the back. I cried last night thinking about it!
I thought about that again this morning as we were getting ready for our ‘go time,’ and I started crying again! As I am writing this, I’m still hearing my Abuela and I’m thinking about the stale cookies in her cookie jar that we all would eat when she offered them, the Christmas candy from the Goodfellows, the fact that she liked the show ‘Alf’ and she would say to us all, “You old fart!”
I am going to start my Ginger Spice chapstick right after Thanksgiving, and that completely reminds me of her!!! I can clearly hear the shuffle of her Chanclas!!!
Cheat Code
At a ‘moment of clarity m’ today, probably realized this last night, I canceled my October 1 appointment. I was reviewing my MyChart for my upcoming appointment. And I saw that it is in Troy. Wait. What?!
I thought about this, and I would NEVER have made an appointment in Troy! Not at this point in my disease! But as I was thinking about it after I took my detox, and was praying before I took my Cinnamon this morning, Dr. Bansal had to changed it herself!!!
As I was listening to my first rosary and drinking my nutrition shake, I thought about the fact that I first wanted to have a Visual Field Test on July 3. But she rescheduled it for sometime in August and that didn’t work for so I rescheduled it again. But then here was the ‘moment of clarity,’ I am the one in charge of my own schedule, and they just accommodate me. I was stressed out for this October 1 appointment because it was early in the day but I no longer can have early appointments! I realized that I was not the one to make the appointment! I knew that I made an appointment for Detroit!
I called Dr. Bansal’s nurse today. Well, I called ophthalmology and wanted to reschedule my appointment with her and then I was transferred to her nurse. I laid it out to this woman, I can’t even remember her name, I told her that I live in Dearborn and I am homebound now. There is no way that I can go to Troy at 2:30!
She completely understood and I told her that I would have to reschedule for sometime in May because I already have appointments for January, February, March, I’m waiting on April for my dermatologist, so my eyes will have to be in May.
She told me that Dr. Bansal‘s schedule was not open for May yet and that is when I realized the cheat code! I need to call Dr. Rumbatla’s Office on October 1 to make my appointment for sometime in April. So of course Dr. Bansal’s may schedule is not open yet. I will have to call her on November 1!
The cheat code was realized once I finally accepted that I am that I am this infirmed now! It startles me that is not even October yet and I already have the first quarter of 2025 scheduled! But just liked scheduling classes in college, it makes sense to me and I can see it clearly. I just never thought my life would be like this!!!
Overwhelmed
I think that I am a little bit overwhelmed. I feel accomplished though, but this was difficult! I told myself that I needed to make three appointments for next year. I called yesterday and made my Internist appointment. And then today I made two specialist appointments. One for a procedure and the other one for a consult. My procedure is in January and my consult is in March. I am getting my teeth cleaned in February. That is one month too early. Actually two months.
I think that I am a bit overwhelmed because this seems to be getting more and more each year. I am seeing Dr. Clark on the 16th. That’s new as well! In February, he told me my nutrition was good and then things started changing and I am seeing him every month now. My supplements change each month.
I have told my Mom that I have never had MS this long and it’s ALL new to me! So, I spent the past couple days, making appointments and getting my teeth cleaned. Maybe that’s what’s bothering me! I have been getting cleanings every six months from my entire life but now I am sick so I need to go every four months. I never saw this coming to this extent!!!
It’s just overwhelming! But I did see on the Hallmark Channel, a double feature! Two of my favorite movies! I turned it on after I went to church from last Sunday and A Country Wedding was just starting and then it went right into October Kiss. I was hoping for a triple play and I was waiting to see Harvest Moon but that didn’t come on and I stopped watching TV and took my contacts out. Now I am listening to music and trying to decompress.