Author: Jen Rios

This humidity today.

My body feels insane! Oh yeah, it’s like this probably ’til about October… #MSsucks!!! 😒😒😒…

Today, my Mom and I remembered that in the spring and summer, I wear her shorts because wearing my sweatpants makes me too warm. I took my dinner vitamins and looked at my lap. This completely startled me!!!:

I told Sean a few weeks ago that my body was changing. I I feel it. have an MS body. Looking at my legs, I realize that is true. For my entire life, I have wanted my legs to be this thin! But, the reason they are now is because my diet is so extremely restricted based on what I can chew. Chewing is extremely difficult. Now and I just have overnight oats, Stovetop chicken stuffing, (the turkey is for in the winter), and about 10 to 15 saltine crackers. I have that for lunch and dinner. I drink a nutrition shake for breakfast.

At first glance, my legs look like I would be a dancer! But yeah, not so much! Instead, I have been chronically ill for 23 years and counting…

Oh, my Mom puts my legs up like that every day that I am NOT leaving my house because the skin on my heels is so sensitive after having the pressure sores in ‘22 that I had for eight months! My heels cannot have any pressure on them at all. I tried to just keep my shoes on when I got my new chair because it was so comfortable but it took a week before the sores started coming back so I had to stop and my Mom does this.

Lately, as my disease progresses, I will ask my Mom if this is the ‘bad,’ my Dad warned us about six years before he died. I say that because my Mom has told me that my Dad read all of the books that I got from the doctor when I was first diagnosed.

I remember that pile of books that I was given at the hospital. It was like five or six full-sized books and not just little pamphlets. I. threw them in the backseat of my car, completely disinterested. I think I finally brought them into my house somewhere around January 5 or sixth of 2001. I forgot about those books once I brought them into the house. I’m pretty sure that I left them on the kitchen table.

I think it was on the kitchen table because I remember flipping one of them open once and reading a single sentence of something disturbing. I don’t even remember what I read but after I did, I said, “Oh, that’s not going to happen to me!” and to this day, I do not like reading any research on MS. It’s depressing!

Yesterday, once I was seated in my wheelchair in my living room, and had taken my morning vitamins and was in the process of drinking my morning nutrition shake, I grabbed my comb out of the box that holds my remote controls, my floss packs, my chapstick, my gum, and my tweezers. I guess this is my utility box of sorts:

This box is from the soap I get on Amazon. And here is the comb:

I did not get this comb until I cut my hair when I was 26. You see, this was the comb my Dad used all of the time and he would get them free from the hospital when he stayed there. I remember when we were kids that I would ask him about that and he would say, “I didn’t have to pay for money for it and it works” was the answer I got.

I remember when my Mom brought it to me (actually two of them) and I treated it with such reverence because I clearlyremember my Dad combing his hair with this exact comb! My hair is short enough to where I just have to run this comb eight times and it’s done. I really have a hard time with this, because I never thought my hair would be THIS short but it is no longer healthy so short hair is better. I cannot even imagine having hair that I had in high school now!:

But this is me now:

I believe this picture was taken last summer.

I thought about this, so yesterday, I was running the comb through my hair, and it was just a little bit knotty. I sleep entirely on my back at night in my Tempur-pedic bed (that my Parents bought me an a couple years ago) and sometimes I turn my head to the left or to the right. Mostly to the left because I am left-handed.

So my hair gets knotty and I put my right hand on my head, as well as I am trying to pull the comb through my hair with my left hand. I make a face when it kind of hurts. I asked my Mom yesterday if I look like Daddy when I make that face as I am combing my hair. She was kind of disinterested walking back-and-forth from the kitchen to the laundry room in my bedroom and I just answered it myself. “ I probably do.” I look like my Dad.

Today, I looked over what my doctor appointment in May is. I am going to meet my and endocrinologist on the 16th. I’m going back downtown to New Center One.

I am not looking forward to that! The hallways are too narrow, and there is cobblestone sidewalk to get to the door to get in when we get out of the parking lot. As a power chair user, let me let you know that cobblestone may look old and cool but it ABSOLUTELY does NOT work for infirmed people like myself. It’s a doctor’s office?!

I like that I am NOT nervous about meeting my endocrinologist. My Speech Pathologist says that it is just bloodwork and my dentist told me that her aunt has it, but she is not taking the medication for it.

I think that my right hip is my bad hip. My right side is my ‘poop side’ anyway. It kind of slides out often and it pops when I transfer out of my wheelchair. It doesn’t hurt yet, but I think that it will…. I will talk to her about it.

So, I had my appointment about the mole on my ankle, and it is totally fine. But there are some other things that are NOT TOTALLY fine! I was reminded of one time when I was invited to see a Tigers game. They were really good seats along the third place line with the possibility of catching fly balls seats! Comerica Park had just been built so it was probably 2004?

I am not a huge baseball fan, but I was excited to experience the ambience of it all! That is, until we got there!!! I wasn’t even in a wheelchair back then. I was on Canadian crutches. There was no way for me to get to our seats?! In a brand new stadium?! Needless to say, I was upset, and we sat behind home plate. We didn’t even stay for the whole game. It was a terrible experience.!!!

I was reminded of that when the doors had an automatic opener so I could go through them, but it was a standard door?! As a power chair user, it’s a little bit easier because I don’t have my hands on my wheels at my sides but here’s the thing, my vision and depth perception are not what they used to be!!!

There was an extremely long and narrow hallway that I needed to go down in order to get to the extremely small exam room. It wasn’t until after we were seated in the van on our way home that I told my Mom that it was completely terrifying to make my way down the hall and go through the door.

She told me that she wouldn’t know by looking at me because I looked completely composed but I told her in my head, I was freaking out! I never like feeling like an oversight! I felt like an oversight and Comerica Park that one time, and I felt like an oversight again at my dermatology appointment.

But as a disabled person, I must tell you that after having MS 23 years and being a manual wheelchair user for 12 years and then a power chair user for 6 more years and counting. I am COMPLETELY an oversight!!!