Author: Jen Rios

That Package

When Sean was 12, I would tell him to NOT to open any packages that arrive! And I remember one Christmas, I think he was 13 or 14 when I ordered free weights for him. Two sets. I ordered a set of 15s and a set of 25s They came in two boxes, one with the set of 15 pound weights and the next box had a set of 25 pound weights. Needless to say, neither I nor my Mom could carry them into our house. We left them on the porch and when Sean got home, I told him, “ Merry Christmas! Those are a couple of your presence. They’re too heavy for me or Abuela to carry so just bring them in. So…” But now, I have progressed to 100% online shopping. I laughed when I saw this on Facebook:

I have been completely tracking my packages! Uncharacteristically, I was late in ordering all of my Christmas presents. But because I have been tracking my packages,ALL of them are going to arrive on time, even my Christmas ornaments! I hope next year I feel more Christmas-y!!!

I Would LOSE My Mind!!!

Sean came over a couple days ago and told me that he saw a Tik Tok video with a dog knocking over a Christmas tree! He told me that when he saw that that he said that I would totally lose my mind! He is 100% correct! I’ve had many of my Christmas ornaments for 20 years! I am a very sentimental person and I am completely certain that if Leia knocked my Christmas tree over and broke any of my ornaments, I would have to hate her! And because I love her so much, my Christmas tree still looks like this because she is just 2 1/2!:

No ornaments and I still have yet to find my tree skirt but this is it! given this is the second year of the pandemic, I’m really not feeling very Christmas-y, so much so that the Christmas ornaments I ordered this year are supposed to be delivered on the 27th. I’m OK with that though, they’re not going on the tree anyway and it’s a gift for me to open and open up on my 21 year anniversary of being diagnosed with MS that happens on the 28th.

#MyGirlL: “Beautiful Girl”

Last night, my Mom bundled Leia up in a blanket in her bed to go to sleep like she does every night. She then was going to help me to get into my bed. Upon transferring from my wheelchair to my bed, I faltered a little bit and a groaned an, “Oh!” three times as I trying to get my footing as my Mom guided me into my bed. Leia, upon hearing my groans, jumped out of her bed and ran into my room. I saw her do this over my Mom‘s shoulder and I smiled! My sweet girl! My Mom turned her head after I was safely laying in my bed and she rubbed her head and called her, “Beautiful girl.”

Since I was laying on my bed, my Mom went back to Sean‘s room to put Leia back into bed with her blanket because my Mom already knew that since Leia jumped out of her bed to help us, the blanket was sprawled all across the floor. Once Leia was all tucked in, my Mom came back to stretch my legs and this song played over and over in my head and I thought of listening to this CD when I was going to work at 7-Eleven in the early morning in the summer after high school:

Tiring

My speech pathologist messaged me a list of words to read off of. It was very similar to the lists of words are used to give my students to read to me. The purpose of me doing this was to see what they were able to read. For me, the purpose of Meira giving me these lists is to see whether or not I am able to say them. I still need to read the third list tonight but I am looking forward to it.

I talked to my best friend today and told her that I need to talk on the phone. She has heard me sound drunk before when we spoke on the phone so she is completely all right with me talking with her. I have spoke to Sean on the phone a couple times today and I asked him how I sounded and he told me that he can tell that I am working on it! But, Meira says if I practice a lot, I may NOT lose my speech. I will hope for that because so much is so difficult for me now! Now, chewing food and speaking is difficult.

The most recent difficulties I have been experiencing startle me and I wonder what else is there to become more difficult if not no longer able to complete. This really scares me. But I have to read my third list and I am tired! I can’t believe talking is tiring for me!!!

Just Once

I posted on Facebook yesterday that it was the first time that I have watched It’s a Wonderful Life. I wrote on that post that I bawled my eyes out from beginning to end! I have seen this movie so many times since I was a small child! Donna Reed (Mary Hatch) was my Mom‘s favorite actress so we saw that movie so many times every single year during Christmas time. I think it had to be four or five years ago that I saw it as an adult. I can say pretty much this entire movie verbatim but as a child I didn’t understand what the movie was about. Seeing it as an adult, crushed me! this is the first movie I can pretty much say verbatim but Hocus Pocus and Love AActually are kind of getting there but for this one, as an adult, I can only see this movie just once a year!

Mind-Blown!!!

I had my first successful virtual visit with my speech pathologist today. I was scheduled last week but I couldn’t logon so she just ended up calling me and we spoke about what we were going to work on. I was able to logon today after calling tech-support this morning. She was having difficulty logging on so it took a moment but we spoke via video chat.

I really like her and I’m comfortable with her. Today, we worked on annunciation of words and she gave me an acronym to remember. She told me that in my level of dysarthria and having multiple sclerosis that my, “Normal” is, “Slurred.” That statement blew my mind tremendously!!! I actually started to cry as I let that sunk in. We only talked for about a half hour but I was thoroughly tired! The fact that my, “Normal” sounds, “Slurred” to people without MS difficult is ato get my mind around! She told me that I am missing a feedback loop and that’s from having MS.

She gave me homework to do before next week. I have told her that I only text to people and I do not talk on the phone anymore. She said THAT will be my homework. I HAVE TO talk on the phone! I am a little bit nervous because speaking as she says is very, “Effortful.” I have to think about who I will talk to but says that the more I practice, the easier it will be for me to do this. but right now, I am way too tired to talk to anyone!

#MyGirlL: “My Darling Girl”

So, we have had Leia for a year and a half now. At first, she didn’t know how to deal with me. She knew that I could not take her for walks or get down on the floor and pet her and she knows that I am sick. She slowly started getting her love from me in small ways. She would come into the bathroom when my mom was washing my hair and put her head on my lap for me to rub. but then the problems with my transfers started. She would hear my Mom and me struggle and would come run to us to be of assistance.

It will always get a laugh out of my Mom and me and my Mom always to ask her what she is going to do because we both know she can do nothing to help us. But we appreciate that she is there for moral support! A couple days ago, there was nothing she could do but I appreciate it to her coming to my rescue more than anything!

A couple days ago, we were getting ready to go to sleep and wer completing the steps necessary to transfer me to my motorized chair when The lack of the dining room chair hit my knee. My Mom says it, “Brushed it” but it felt like I was Nancy Kerrigan and I shoved both of my hands to cover my mouth to try to muffle the scream that already escaped my mouth! My Mom tells me that Leia, who was snuggled under blankets, ”Bolted” out of her bed and ran to us!

Leia came right up to me and wanted to put her paws on my bad knee that was in a whole lot of pain. My Mom told her not to so she put them on the bench that was next to me. I looked at her concerned face as I continued to cry and I scratched under her chin and rubbed the side of her face and the side of her belly. She started to stick her tongue out as if to tried to lick me and I told her, “None of that!” as I finished petting her side. I see put her feet down from the bench and went back to sleep. I’ve been thinking about this for a few days and all I can think, like Daniel in Love Actually, Leia IS, “My darling girl!”

Who Likes Mondays Anyway?!

DISEASE PROGRESSION ALERT!!!:

today is Monday. My disease has progressed to me needing to have my nails cut every single Monday because I no longer have control of my fingers and hands. This fact is difficult for me to handle because when I stop biting my nails when I was about 10, are used to let them grow until one broke and then I would cut them all. I miss my, “Claw Nails” as my Barwis trainer, Adam, called them. I took this picture this morning before my nails were cut. I think it is absolute crazy that these are too long but I am finding that my nails tend to touch my eyeballs what I am trying to insert my contacts which hurts so that’s why I keep them short now.

so, every Monday morning now, I cut my nails so I won’t be able to put my contacts in. I am just startled by the progression of my disease wonder how far it’s going to go in my next 20 years because I am approaching year 21 on the 28th of this month. I thrive routines so it’s easier for me to remember that every single Monday I need to cut my nails. My Dad died on a Monday. The last significant break up I had before I exited the game was also on a Monday. Who likes Mondays anyway?!

Sad Truth

The other day, I was looking for the scene with Karl and Sarah when he tells her that she’s beautiful because I love that! I couldn’t find it but I saw this one while I was down the rabbit hole. I think it’s crazy that I am STILL learning new things because this is the third year that I have watched Love Actually 25 times in December. I appreciate how I still get lost in the movie and say grieve with Daniel and Karen as well. I just watched the scene where Juliet comes over to Marks place and sees the video he made. I feel so badly for Mark! Back to this deleted scene, I didn’t know Sarah brother’s name was Michael. Statement of fact made me really sad! Because when I think about it, I’m in hell too if I really think about it which kind of stinks to say but still is the truth…