Author: Jen Rios

I think that Sean was in fifth or sixth grade when we were ‘back to school’ shopping and I looked at him and told him that back to school is my favorite time of year, and it will be for the rest of my life!!!

I also remember that year that I had him bring his school list and I had a yellow highlighter to highlight everything we got. I remember a man looked at me and said that that was a really good idea! I told that I was a teacher. I also told him that I usually get two of everything because in January, he’s going to need new supplies!

I remember feeling so helpful back then in this instance. Let’s fast forward to now where I am homebound and stopped working eight years ago. When I woke today, I was cleaning out my emails and I saw a back-to-school Target email. I have seen Kohl’s back to school and a bunch of others. I just delete them. That part is sad but teaching is not part of my life anymore. My certificate expired a few years back anyway.

So, this afternoon, when I was deleting my emails, Back to School shopping was just a passing thought. I remembered that used to love it but the things are different now! I seriously used to think about throwing my manual wheelchair in the trunk of my car before getting into the disabled parking spot at my work when I was 65! It’s crazy that I had to stop at 35 because #MSsucks!!! 😒😒😒 Things are so different for me now…

I got this meme from a fellow MS warrior four years ago. For me, it’s NOT antisocial it’s infirmed.

My life pretty much stayed the same. Well, I guess that’s when it changed. It started in 2021 but we did not read it until January 2023. In January 2023. because I have been disabled for so long, my insurance changed to HAP senior plus.

The last time we went to get our teeth cleaned last February, because my Mom goes with me now instead of Sean, there was no charge for cleanings and x-rays. That is the extent of my dental care! I do have a cap on the left side of my mouth because in high school, I opened a water bottle with my teeth but that is the only thing going on with my mouth.

I really can’t believe my life is like this now, but it is. I just go to the doctor, get my teeth cleaned, and get haircuts. At least I know what is expected of me 23 years into this horrible disease… this is more difficult now!!! #MSsucks… 😒😒😒…

I received this email today:

I so much appreciated getting this email because this heat is killing me! It has been killing me since the very beginning of June! I’m really not sure how much longer I can handle this.

I still have what I think is two more days in my ‘bag-o-chapstick’ of my cucumber mint before I will have gone through all four tubes of my spring/summer flavors!

A few days ago, I got a boost, where I just felt great where I almost wanted to look at my Mom and say let’s watch a movie, but then I went back to the mode I am in. This consistent 80° is killing me. I did not know that it would kill me to the extent that it is! But this is terrible!!! So, of course, oh, I am BEYOND ready for some fall flavors of chapstick! My box is all set as soon as I finish my Cucumber Mint!!!

Maybe pictures will follow when the weather gets better…?

I forced myself to eat lunch today as well as yesterday because I am running low on nutrition shakes, and a new box just arrived today. I had to wake up early because I had a virtual neurology appointment today.

My appointment lasted about a half hour, and my Mom held my phone so I could show my Neurologist my arm movement and she wanted to look at my eyes as I looked sideways and up and down. She asked my Mom about my transfers, if they are any different than they were last year and my Mom said they are not.

After I showed her my eyes, she had me hug myself and waive my hands over my head. My Mom told me that I did all of the movements before she asked me and I told her that I have been doing these movements for 23 years!

Toward the end of my appointment, she asked me a question. It was the first time she had asked me it in 23 years. She asked me if I was depressed. I thought for a moment and looked at her, and sort of smiled weakly and told her, “No.”

After I had ended the phone call for my appointment, I looked at my Mom and told her that Dr. Cerghet has NEVER asked me that and I’m a little bit startled. I told her that, this IS depressing! 100%!!! But I am SO grateful that I am NOT depressed, I do get down a little bit, but my Mom told me that it doesn’t last that long. It’s nothing concerning.

My Mom told me a story about her walk with Leia today. My Mom walks the same route all the time, but she said that today, she walked a little further and Leia was able to see her reflection for the first time!:

My mom told me that Leia just sat down and stared at herself for a while. I laughed! I told my Mom that she looked at herself and thought, “Hold up, wait a minute!”

Yesterday, I felt awful! It wasn’t even hot, but the rain was terrible! I told my Mom that it was ‘tough,’ because it totally was!

I was really trying to figure out how much longer I would have to handle this, but today, I think I got a glimmer of hope because when it was time for me to have my lunch, it was only 79° so I forced myself to eat food. What I eat now is completely easy to chew. But in the heat, it’s so hard to do that!

I told my Mom that when it is in the 80s, I will drink my lunch, but anything lower than that, I will eat food. It’s going to be a little chilly tonight so now we have gotten into the realm of heat at night and air in the day until it’s all heat all the time.