Author: Jen Rios

So, I saw half of a Hallmark movie maybe a week and a half ago and I liked it. I knew that the movie would be on again sometime soon so I would catch the beginning half this time. This was the movie:

I liked that. I was surprised that this movie came on and I was able to see it from the very beginning! So these kids, are doing a family tree for a class project. The little girl is the product of IVF. They find her biological father in true hallmark movie fashion! I will say this movie is NO A Country Wedding or Harvest Moon. But I really liked it!

I have been a diehard Hallmark channel movie fan since 2009 when we moved into this house! I really liked the cheesy dad jokes! I heard the first one the second half of the movie that I saw first when this kid says that his dad calls them, “Ice Cubes” because they are from Iceland and Cuba.

But I must say that the thing I liked the best was when the girl’s mom has a best friend named Maura and she was talking with the woman about meeting the dad. And the woman does not want to meet him because he is a professional musician. The best friend says, “So, you don’t want to meet your long lost bad boy baby daddy?” that statement made me laugh audibly!!!

So, after I got out of bed and rolled into my living room, and while I was washing my hands, I told my Mom, “It smells like our apartments!” because my Mom made brownies this morning while I slept. They were still baking when I woke up.

It’s been a really long time since I made brownies in my house. I’m not really able-bodied anymore. I never thought that it would get like this but that is how it is!

My Mom told me that she always forgets how easy it is to make brownies. I told her that is why I would make them! They were so easy to make and then me and Sean could have something sweet! I would buy the brownie mixes when they were on sale, 10 for $10. I always had brownie mix in the cabinet in both of our apartments.

I remember that I would make three boxes to take to my work. I would put them in a plastic container, separated by paper towel and just leave them on the table in the teachers lounge. Overtime, I would have to hand deliver brownies to the classrooms of teachers teaching during first hour to make sure they got a brownie.

I smiled when I thought about how much my colleagues loved my brownies today as I ate two of them and I didn’t/don’t even feel guilty!!!

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.