Author: Jen Rios

Well, Sh*t.

I had my bone density scan yesterday. I was a little bit nervous because I haven’t had one before and I kind of thought it would be like the movie, Passengers, but it wasn’t. I got a notice from MyChart about the results on our way home. My Mom was headed to Meijer and she read me the findings in the parking lot because I can’t see my phone with my contacts on.

She read the results to me as I sat in the backseat of the van. Turns out, I have osteoporosis. Well, sh*t!

I had bouts of panic-crying like I had just broken up with someone! I didn’t like how I felt yesterday at all!!!

Before we left the house yesterday, I told my Mom that wheelchair users just get osteoporosis eventually. I remember when I watched that series Push Girls, one of the women had it! I told her that not thinking that I would have it as well! But I do. Well sh*t.

I remember that my hips were burning when I woke up on October 28, 2023. It’s the burning that I felt that woke me up. That is when I thought something was different in my body! But why wouldn’t it be?! I have had MS for 23 years, been a manual wheelchair user from 2006 to 2016 where I got fitted for a custom manual wheelchair and then in July 2018, I begin using a power chair. I am on my second power chair. I got it on December 14, 2023.

Today, I realized that I have felt this way before. 22 years ago. The Wednesday before Thanksgiving when Sean was still in NICU, a nice doctor, I can’t remember his name, but I can remember his face. He was a little bit older than me, but still young, and he had brown hair. He complemented Sean’s onesie that was way too big for him but I told him that I would be getting preemie clothes that weekend. He was telling me about the brain scan that Sean had as was customary for all premature babies.

He told me that there was some abnormality in it. That freaked me out!!! He said that it could be brain bleeds or a normal variant. Another doctor was going to review the scan the following Monday. I remember that being the longest of weekends, but EVERYTHING was back when Sean was in NICU!

Just like I had that long weekend 22 years ago, this weekend is equally as long because I have yet to hear from my PCP about the results, and I will be forwarding the results to my naturopath, but all this cannot happen until Monday.

I talked this over with my Mom yesterday, and we both decided that I am safe in my wheelchair and the fact that I am home bound helps a little bit. I had to do a little bit of online research (which I hate) but I didn’t know much about osteoporosis. I only did a little bit before I stopped myself and told myself to just wait until the doctors talk to me on Monday.

I had my ‘cry out’ yesterday after getting the news, so I don’t think I will cry anymore but I don’t like this! My Mom told me that I looked like I had been punched in the face after getting that news. That’s how it felt and it still feels a little bit. I will just have to wait until Monday for some answers.

Strange

My Mom left to pick up the van because I am getting a bone density scan tomorrow afternoon. I have already checked in online and upon check-in, I need to NOT have vitamins today until after my scan tomorrow. I started taking my regiment of vitamins in the summer of 2007. What I take has changed somewhat through the years, but I have to tell you that not taking anything feels strange! So strange!!!

Nonexistent

This is NOT a daily occurrence, but it happens from time to time. Let me ‘splain ya:

My sleep schedule is completely off and I don’t wake up and get out of bed till about 2 o’clock in the afternoon. So 2 o’clock is my morning and I’m telling you that for purposes of this story:

For breakfast now, I drink a nutrition shake. I drink that shake after I have taken my morning vitamins on an empty stomach. My Mom will hand me a nutrition shake in my left hand and she is coming out of the kitchen because I am left-handed and that’s the closest one to her as she comes into the living room. I shake the nutrition shake with my left hand and use my right hand to twist off the cap.

That is except for THIS morning (which is really the afternoon) because my right hand could NOT twist the cap of a nutrition shake off the container. I switched hands that I was holding the container in and tried to twist the cap off with my left hand because that hand is stronger. It was not happening! I think it took me three or four times from each hand to try to get the shake open.

So, this morning, my hand strength was nonexistent. I am squeezing my therapy putty every day and it still feels like clay rather than Play-Doh. In about April or May it will feel like Play-Doh and then I will throw it out and get a new container of putty on June 18. This is a little bit concerning to me because my disease is progressing every day and I wonder when my abilities will be completely gone but I’m not there… yet.

Tiresome

Today, I had an appointment with my Speech Pathologist. Her goal today was to get me tired and it completely worked! About 17 minutes in, my eyes started to hurt. My speech slipped a few times as we spoke, but I was able to correct it.

I met her in October 2021 for my swallow test. I started seeing her after that. She told me that I am not unintelligible but she told me that it is tiresome now for me to speak. It really is! I am still trying to wrap my head around that!

She gave me homework. She told me that I need to have 2 30 minute conversations with someone and that it counts if I talk to my Mom. She also told me that conversation with Sean counts as well.

I called Sean today and he agreed to help me with my homework:


I got an ‘A’ today and that makes me feel good but I don’t like thinking about how difficult it is becoming to speak now…

Rando Tune #55

I am playing 3-D tile match, and I listen to Sheryl Crow and then this song came on And my memories were ignited!!! it was the linguistic class that I was in and we Talk about a song that gives ‘artistic freedom to the singers.’ Or something like that. I don’t remember what song I spoke about but I remember a friend of mine talked about this song:

I don’t even remember this girl name, but I remember that she used this song to talk about ‘artistic freedom.’ I can’t even remember what I talked about point I guess undergrad is too many years ago now.

Back When I Thought that he’d end up More of a Success than he Actually Was…

I shared, I have been sharing that Sheryl Crow song because that’s my jam! I recently looked through her catalog I saw a song where she did that duet with Kid Rock. I forgot about that song! But then that got me thinking.

I wrote my senior thesis to this album, and I don’t even remember what my senior thesis was about:

I do not want to listen to this album again, but it reminds me of a different time in my life. So I was thinking and I found this video and I was in high school back when the MTV video music awards were something big I thought he was so cool!:

that really seems like a lifetime ago…

Neat

So, I am a little bit startled at my disease progression at this point. Probably more than a little bit, but I am already starting to make further accommodations. For example:


I no longer possess hand strength and control enough to apply chapstick in the normal way. I cannot put the cap back on when it is too exposed on the tube. So this is what I do so I can close it now without denting the exposed chapstick. I miss the feeling of the Chapstick conforming to my lips but now I can’t do that anymore because I keep it mostly in the tube now. At least it’s neat, I guess?

Rando Tune #54

So I have been listening to a lot of Sheryl Crow! Specifically this song:


I have to listen to it on Apple Music because if I listen to it on my blog, it cuts out. A few nights ago, I was looking through the queue of Sheryl Crow songs, and I saw this one, and I had almost forgotten about it. Well, I think I forgot about it until I saw it! If I recall correctly, I was working at dfcu financial when this song came out and I was still an undergrad. Sean was alive, but I was still living with my Parents. I didn’t even have my bachelors degree yet!:

I forgot that they dated for a while until I saw this video! I just saw it for the first time today.

I Roont It!!!

So, I had previously made the executive decision to change my to Vanilla Bean chapstick when I went to my dermatology appointment but, it felt so nice putting my Cocoa Mint on my lips and I like the taste so much that I thought I would try it out. I would just cautiously put my ‘bag-o-chapstick’ in the pocket where I put my phone on my chest.

well…

I roont it!!!:

I saw that it was roont when we were leaving my appointment, but I still used it carefully because my lips were a little bit chapped. There is chapstick all over the inside of the back, and I just threw it out.

Once I was home, I opened my Vanilla Bean Chapstick and I learned something. If I just raise it a little bit, I can put chapstick on and then twist the plunger back into the tube. It’s a little premature to use Vanilla Bean chapstick but that’s what I’m doing I guess.

NOT a Bust…

So, my dermatology appointment had to be be rescheduled for April 26. That’s really good because I had a dentist appointment in February and an internist appointment in March.

It’s rainy and it’s cold, but today was not a bust because parking was free and in addition, we got a deep dish pizza from Little Caesars! I still can eat that!

Next week, I have a bone density scan. I guess I am taking this Chronic illness Care serious.ly. I will never forget the morning of October 28, 2023 and two months to the day before my 23rd anniversary of having MS, both of my hips felt like they were burning.

How it feels when my knee pops out of its Sacket. The first appointment available I could get was in February. On my brother’s birthday! It’s my brother Jimmy’s birthday! We are also getting our teeth cleaned on my brother Steve’s birthday!