Author: Jen Rios

I think that the reality of my current situation is starting to sink in. I just exist between appointments. We are going to see Dr. Clark on Tuesday.

I have 4 appointments in October, but that is because we are going to the cider Mill! And I am super excited! But yeah, I just exist.

So, I have a new sensation. Well, I guess it’s not so new…

bottom line = my bones hurt.

This fact is so alarming to me because a couple things went on before my hurting bones right now.

• I woke up on October 28, 2023 with both of my hips burning!!! I started sleeping with a wedge October 29, 2023. I still do that today! My Mom puts it in on my right side and changes it about six hours later while I am still sleeping. I am still sleeping when she does this and when.I wake up, the wedge on my left side.

• I was told that I had osteoporosis in my right hip in January 2024 after my bone density scan showed that I had it. I saw Dr. Clark, maybe a couple months later he prescribed me wafers that I have been taking daily morning and night. Shortly after I started taking those, my hip stopped feeling like it was sliding out of its socket and now it just pops a few times a day. I will never do anything about this. My body cannot handle surgery at all… again.

But now, my bones just ache! While I am sitting in my wheelchair, They ache! I am so glad that I am going to the doctor on Tuesday to talk to Dr. Clark about this.

I don’t remember this movie clip being so sad!!!

I have inadvertently watched SpongeBob for the last 20 years!!! Sean and my dad loved it and sang the opening song ALL OF THE TIME!!! somehow, I thought of this movie clip and I watched it. It’s so sad?!

So, that’s a thing now. My tear-streaked face. It first started happening in May when it started to get warm. I have to tell you that it’s not Anne Hathaway in Les Mis but I will NEVER forget that feeling! It’s NOT that far in the past! I groaned when I brushing my teeth this afternoon. It’s because it’s a little bit warm right now. I’m leaving the house tomorrow and I think I might have my T-shirt and zippy because I think it’s too hot for a hoodie.

I was extremely interested when I read this article and lupus is MS‘s cousin. The feelings are the same! I’m thinking that my tear-streaked face is a summer thing. I NEVER have experienced it before but man, do these tears come with the quickness?!!!!

https://themighty.com/topic/lupus/embracing-darkness-depression-that-accompany-lupus

My Mom is picking up the van tomorrow for haircuts on Wednesday. Next week, I have an appointment with Dr. Clark.

Sean came by today and he asked if he could watch the Lions. I agreed and they won today. But, I must tell you that I listened to the game more than I watched it. A lot is going on!!!

I wasn’t so interested in players, but I did like seeing the plays. I paid attention when a big play was going on so it was like watching the highlight reel on Twitter.

I told Sean that the last full football game that I watched was when the Rams won the Super Bowl. I just wore that shirt the other day. But, sadly, I think watching and enjoying football is behind me now…

Before the game started, Sean said that he missed cable commercials. We watched this one and we laughed!!! He said that he’d like the fist bump high five at the end. I told him that I have been trying to get him to come over to my credit union since he was 16 years old. He opted for the big bank convenience! My credit union, which I used to work at 23 years ago when I was in college, has better rates! Maybe I will get them to switch over soon but here’s the commercial:

I taught seventh grade English from 2005 to 2010. I think it was 2008 when we had ‘a moment of silence for 9/11 victims. We were doing that my first year teaching because my first year teaching was 2005.

I think that it was 2008 right after the ‘moment of silence’ were a student asked me, “Miss, what was that like?” I could feel my demeanor change. In a completely sober tone, I said, “Sad.”

With a straight face, I said, “I was in college and six months pregnant. I had an auditorium class where we were cut off from the world as we were we’re going over art history slides. That’s the class I was in when it happened.

So, we leave class and I’m headed to my second class of the day which was women’s history and I get seated in my desk when a guy walks into the door and announces that the second tower fell. The woman who sat next to me, used to work in that building, and she began to cry. Hysterically cry, just as the professor comes in and cancels class and tells us to find a TV somewhere. It was scary and we did not know what was going to happen next.”

I don’t know that my seventh grade students were anticipating that answer but that’s what I said. Today, I didn’t realize it was September 11 until I got on Facebook:

I’d see something like that and I would feel a catch in my throat. And I continued to scroll:

A Facebook friend posted this, and I started to cry:

All day long I have thought about a writing class I had that was in session on September 12, 2002. She assigned a ‘free writing’ assignment and said that we could write about something that I don’t remember, but the last thing she said is what I wrote about. She said,“Of course, to commemorate yesterday’s events you could write about ‘loss.’”

My Mom and I had just watched a 20/20 and the babies were born after 9/11. Their mothers were pregnant or did not find out until AFTER their husbands died.

I remember at me and my Mom watched that pretty much without talking. It was sad. I remember that my professor commented for 20 minute free write, the fact that I could write four pages was impressive.

I know I have that paper in the box with all my notes from college. Maybe one day I will look for it. But this one made me cry the most! I actually sobbed:

I’m surprised that I’m so emotional this year. But, with disease progression, I guess that’s not all that surprising…