Author: Jen Rios

Out of my House

I got out of my house this morning. It was for my monthly haircut and eyebrow wax appointment. I told her to go back to the reverse bob that I got so many years ago for the first time. I was 26. But now, at almost 40, it’s so much easier. I can’t stand the feel of hair on my neck anymore. Having had MS for over 20 years, I have a very extreme sensory disorder now. I had my mom take a picture of my short hair in the back just to make sure. The woman who has been waxing my eyebrows and cutting my hair for 20 years is expecting her second child in January. I made an appointment for December but I told her I will just wait until she gets back from having the baby to get a haircut after that. I waited over a year during the beginning of the pandemic so it’s okay with me.

We didn’t rent a van this time so instead, Sean accompanied us to be the brawn to get me in and out of the car. Over the years, my core strength has diminished but my knee injury has sent me over the edge and saying that now I am in a motorized chair all of the time, my car strength definitely has been affected and is almost gone completely. My mom did not mind sitting in back so Sean decided to go to Cold Stone Cremery that is right by my house. I am definitely not a huge fan of eating ice cream when it is freezing outside but Sean and my Mom were getting a scoop so I told him to get me a scoop as well. As he was getting out of the car, I told him that, “ mint chocolate chip is my jam!” And it made me smile that as he was closing the door he just said, “I know.” As Sean and my Mom were in the store, I started fiddling with the radio.

I have written before that I am old because I enjoy music from my young adulthood but now I am almost 40. Sean has been driving my car for over a year and my radio stations are all messed up but somehow, I got to 80s on eight. And the opening bars of this song had just played. This song reminds me of my Mom!

I listened to the entire song and smiled to myself. Sean and my Mom got back into the car and I ate my scoop of ice cream. It was totally of season but I really enjoyed it! I spoke with my Mom as I am drafting my blog post and I started to laugh. I was remembering back when I was p music club and got a new CD that I was listening to for the first time in my car. It was The Incredible Journey. I showed of my Momt the CD case as we drove to wherever we were going. Once we got back and I put my car in park in front of my Parents’ house, my Mom just ejected the CD and told me that, “I’ll have this.” She got out of my car and walked toward the porch. I looked completely aghast and shook my hand. I just decided to let her have it! It’s like the Diet Coke commercial, she IS the reason I like them!

A Decade OR, “I Love This Toothbrush!

I had posted a few weeks ago about the fact that I bought myself an electric toothbrush. I took it with me to the dentist when I got my teeth cleaned so she could explain it to me. Let me tell you a little bit about my dentist. I know I have written before but it’s easier for me just to give you the, “ Quick and dirty.” I have been going to the same dentist for my entire life and so has Sean. We used to get our teeth cleaned at the same time. Sean’s hygienist’s name was Cher. She used to be mine but I moved over to have my Dad‘s hygienist so Sean and I could get our teeth cleaned at the same time. Cher retired a while ago and Sean got a new one, named Lisa. I continued to have my teeth cleaned by Judy. Judy just retired before the pandemic so I changed over to Kristen. She cleaned my teeth before lockdown and then I didn’t get my teeth cleaned for the first time in my life for a year and a half. Maybe two years.

Now, my Mom and I get to our teeth cleaned just like Sean and I used to do. My Mom makes the appointment when she is getting her teeth cleaned so she has them with Kristen and my appointments are with Lisa but I’m okay with that. I feel so comfortable at that office and I can just remain in my wheelchair to get my teeth cleaned. So when I went there at the end of October, I showed Lisa my new toothbrush and she explained it to me. She turned it on for me and had me feel the running bristles and she told me, very specifically, that I should, “Give it a two week college try!”

Hearing her say that to me made me a little bit nervous that I would not like it. I wanted an electric toothbrush for Christmas back when I was 15 or 16. I think I was 16 and a sophomore in high school. Neither one of my Parents thought I was serious so I did NOT get one but I really wanted one! teeth have always been very important to me!

I just tried this toothbrush yesterday morning. I know it’s a little late but it’s better late than never and I must say that I am excited to tell Lisa because she does not know that I was in college for a decade to get both my bachelors and masters degrees. It’s a piece of cake! Because yesterday morning, I ran my tongue over my teeth just after I brushed and flossed them and I felt like I just gone to the dentist. This morning, when I woke up, I told my Mom that I was excited to brush my teeth!

I have decided that I love this toothbrush! I can’t wait to tell Lisa but I kept saying it to myself and then I started hearing this song in my head. I’m not a huge fan of this song but it is an homage to my serving days at Lonestar. I have two or three chilled glasses in my left hand and two or three cold bottles of beers intertwined in my right fingers and I am walking to my table. Toby Keith reminds me of my Dad so I don’t mind and I have a memory I like to stay visiting for a while because that is some thing I used to do… walk.

“Hold Up, Wait a Minute!”

So, I had some difficulty falling to sleep last night so I decided to scroll through target.co, because I had just placed two orders for necessities when I got paid. I decided to scroll through the search history for Burt’s Bees gift sets again. At about 3:30 in the morning, I saw this:


When I saw that, I heard a song in my head from one that I had to be like eight years old. I should have scrolled through more completely when I received my Social Security so I would have added that one to my chapsticks when I got my Christmas and New Year’s chapstick pack. I would have seen this one and I would’ve ordered it!

If you look in this picture, the box that is the second one from the bottom is my Christmas/New Year’s box of chapsticks but remember that I said yesterday that I don’t use the yellow ones because those are peppermint and four Winter flavors I just ordered, the red is peppermint as well. I definitely can find different places for them in order to put the shortbread cookie flavor in. The day after Thanksgiving is reserved for ginger spice and I wear that all the way until the day after Christmas because Ginger spice reminds me of my Abuela because of the candy she always had in her house at Christmas.

But when I saw this flavor of chapstick that would totally fit with my winter and New Year’s flavors, I’m DEFINITELY ordering that when I get my next check! I will probably post a review on it! It was after three in the morning but I was singing this song in my head as I drifted off to sleep. I remember hearing it coming from the basement of my house when I was a child because my older brothers will listen to it:

A Game

I received a Target order today. When I awakened, I saw the notification on my phone. In this shipment, my seasonal chapstick collection is complete! I figured out the right words to search when looking at target.com for chapstick. It’s under “Burt’s bees gift sets.” So now, I have all the chapsticks I need for the entire year and I will replenish them as needed. I already know that I will need to order more pomegranate flavored Chapstick around March or maybe even February. I use vanilla bean and pomegranate between seasons. If it is cold, I use vanilla bean but if it’s feeling warmer, I use pomegranate. I think it’s silly that I do this but my brother, Jimmy, got me these really cool boxes when we were quarantined for me in the beginning of the pandemic. They had my gum in them and my chapsticks fit in there perfectly! I don’t use the yellow ones because they are peppermint and the red one is peppermint as well but I have been toying with the idea of having chapstick on the table by my bed because just before I fall asleep, sometimes my lips dry out. I’m not sure what I’m going to do with that but I don’t want to waste them!

I gathered all of my chapstick boxes and before I arranged them, I sang James Taylor in my head. That song always reminds me of my cousinT Shannon! From the bottom to the top of the picture, it is, “winter, spring, summer, fall.”:

I was having difficulty trying to find a title for this blog post and I didn’t want to call it, “James Taylor”so I thought about the fact that I am spending so much time thinking about the type of chapstick that I use. I have nothing but time now that I no longer work and MS is raging through me so I can just make that a game because I apply so much chapstick because for whatever reason, my lips get really dry and cracked without applying chapstick very liberally all day long. I’ve told my Mom that my body is shutting down but she really doesn’t like me to say it like that and if I can avoid thinking about that by looking at my chapsticks, so be it.

Savage

I got pregnant with my son in April of my freshman year of college and it was four months after my MS diagnosis. I had my son two months early via emergency C-section so I had to withdraw from the classes I was in at the time. I was told to, “Approach the chair” and was able to get all of my tuition money back except for the fees for each class. But because my sophomore year of college only consisted of one semester, I was behind in the credits and so once I went back to school after having Sean, I went full-time until I graduated.

I have recounted this story so many times because, even today, I can’t believe that I did it. Even before I had Sean, while I was pregnant, living with my Parents, I told myself and I set a goal being out of their house and on my own by the time Sean was five and when he was going to start kindergarten. I have written before how I used to pour over the class offering lists all the time in order to maximize the number of classes I took each semester. But, I was working in a deficit even taking 15 credits a semester, it’s so was going to take a while for me to finish. I kept looking over the class offerings and they enjoyed the seven week courses in the summer the best. They were quick and I was able to add to the number of credits I needed to graduate.

I remember, specifically, looking at the course offerings for what would be the summer and I was in between a sophomore and a junior. I looked at all of the classes that were being offered and I crunched some numbers. I figured out that if I took 23 credits that summer of the classes that were being offered, I would have a full schedule in the fall, student teach in the winter, “Walk” (Graduate) in the summer while I had two additional classes to finish but then I could get a job teaching the following fall. it was ahead of schedule but that’s what I was going to do! Now, all I had to do was DO it!

I figured that if I took a full schedule each seven week session, that would put me on track to graduate the following summer. In order to be approved to take that many classes, I had to, “Petition the chair” for permission. In that meeting with them, I laid out the fact that I had a two-year-old at home and was trying to condense my schedule because I was going to teach and if I didn’t take that many classes in the summer, it will delay graduation another semester and I wouldn’t be hired in the middle of a school year so I would be unemployed for entire school year after I graduated. I remember that he looked at my grades and told me that it looks like I can do it and if I want to do it, I was given permission.

it was EXTREMELY difficult but I got it done! Everything worked out precisely and Sean and I were able to be out on our own by the time Sean was three. I took the contract from CCA that said that I was just hired in and was able to get an apartment. When Sean was over yesterday, we were talking about college and somehow I just offhandedly said, “Or, you can take 23 credits in one summer.” I said it as if it was no big deal but it is something that I did. Sean surprised me and he looked directly at me and said, “That’s savage!”

I was completely taken aback by his statement but thinking about it, I guess it kind of was. I told him that I will NEVER do it again and I thought I was going to die! I also told him that I had a goal and I had a child so I HAD to do things in order to get things completed on time. but, even though in retrospect I think that’s crazy, I’m glad that I was able to do it because Sean and I were able to be out on our own when he started preschool. It is an incredible story to think about but I had to do what I had to do! And if that”Savage,” so be it!

Part of THIS Club

I have had a lot of stuff in my head since Tuesday and it translates to me having more MS-y days. because I have not been feeling well all week! But today, Sean came over and my Mom went shopping. When she came home, she had me listen to a song and she told me that it was, “For you.” I was familiar with the song but I never listened to the words because I do not have a daughter. But hearing my Mom tell me that it was for me, make me cry as this song played and my Mom reminded me of a time that she saw it was, “So tender.”

It was right after my Abuela died and before my aunt died. Her mother and her sister. When we would drive around doing errands or something, I was only seven when my Abuela died and had just turned eight four days before my aunt Rita died. I was allowed to sit in the front seat back then (because I am so old) and I would ask my Mom as we got into the car, “Are you going to cry again?” And as we fastened in, she would start to cry.

I would just sit next to her silently and put my left hand in the crook of her right arm at her elbow. she would continue to cry and she would put her left hand on top of mine. I can clearly remember doing this more then we’re just gonna go to the 30 years ago. I think it’s sad that I am not part of the club because I do you not have a daughter but I really liked being part of the club here because I AM my mother’s daughter:

Banking my Voice

I first thought of this the moment I heard Meira say it. She told me that we were going to, “Bank my voice.” I was very familiar with what that is and why it is done. I just couldn’t believe that it’s really gotten that far for me! She told me that it may not be necessary but we should do it, “Just in case.”

That kind of struck me. Is it really like that for me?! I remember watching A Football Life about Steve Gleason. It was talking about when he was going to scale Machu Picchu with his wife, friend, and another person newly diagnosed with ALS. I think that Steve Gleason had already gotten the voice control apparatus on his wheelchair because he could no longer speak. I remember seeing the other guy who was going on the trip who was newly diagnosed and he could still speak but it sounded odd; it was the beginning of not being able to speak.

I also thought of Stephen Hawking and I remember seeing The Theory of Everything. The thing I think about most whenever I think of that movie is when he was addressing a college class. A girl in the front row dropped her pen. In the movie he sees the pen, gets up out of his wheelchair, and gets it. I think about doing that all of the time, especially now because I drop everything now.

I was thinking about both of these men as Meira handed me the list of things for me to read. I was completely reminded of myself with her organized white binders. I used to do that when I taught. I did give her a tip for future patients. I told her to print them larger because some of the difficulty I was having was because the print was too small for me to see.

I guess I have been thinking about this appointment since Tuesday and it is a little startling. That’s how it is now?! I can only handle thinking about these big changes in little bits. I thought about reading children’s books for my future grandkids on audio but I think the time for that seems to have passed. Some days I speak normally but it seems there is just a hint of, “NOT normal.” When my voice is, “NOT normal,” there are only a few people who I speak to. It is a very short list and only consists of three people. My Mom, Sean, and my best friend, Ami. All of them are patient as I struggle to form the words in and get them out of my mouth. It was gradual and I haven’t really thought about it. It’s been a long time that Sean would order takeout for us and my Mom would speak to doctor’s offices for me. I start my virtual appointments with Meira for speech pathology on December 7th and I wonder how that will go? I have 10 hour long appointments scheduled.

A Difficult Time

There are many things that I am still trying to digest from my speech pathology appointment last Tuesday. But thinking about things that went on that day not related to my appointment, I am having a really difficult time processing those events. I think I will just explain them here and maybe get more clarity as I write this blog post. I hope…

I learned a while ago that I need to schedule when I am going to leave my house. It takes a lot out of me to be, “Out in the world.” it has been a really long time since I have been, “Out in the world” and a few things have reminded me of how inaccessible the world is. I am having a difficult time processing this. Or better yet, I fear that I am no longer equipped to be out in the world…

To better process this, I need to think about when I was out in the world every day. What I am noticing as my disease progresses is that my eyes are really being affected. I thought about it and back when I used to teach, which was a long time ago, I used to teach with just one of my overhead lights on. What I learned after a while is that the fluorescent lights are a little much for my eyes to handle. Being in the classroom all day long, it was easier on my eyes to have just one overhead light on. That worked out because my first two classrooms had two light switches to control the lights. My last classroom, however, only had one but there were so many problems in that classroom with temperature control that I didn’t really think about my eyes hurting because I was freezing!

Anyway, after my appointment with the speech pathologist, because we had rented a van to accommodate my motorized wheelchair, I was going to make another stop while I was, “Out in the world.” I knew that making the day a, “2fer” going to be extremely difficult but I was going to push through! I had finally had money to purchase a new TV because mine is dying and I was also able to get an iPad because my eyesight it’s failing so it’s easier for me to work on an iPad opposed to my phone. Rather than just buying them online, I wanted to have a sales person at Best Buy explain the best option for a TV for me and I wanted to get my iPad programmed.

That whole process took about three hours. It was not until I had difficulty exiting the van on the ramp and then seeing my door opened to get back inside and there were halos around the lights on my chandelier. It all made sense to me after I saw that! After I was able to get back into my house, I immediately took my contacts out and placed my hands over my eyes for probably close to 30 minutes to let my eyes calm down. You see, now, when I go out in public, and pretty much all the time when I’m in my house, I have to wear glasses in addition to my contacts. Let me explain this new development:

When all of this started happening with my eyes probably a little over a year ago, I clearly heard in my head the first doctor who told me I had MS. ”Look, you have MS, you are going to go blind, and then you are going to die.” My Mom and I recounted that story to the last three doctors I have seen this month. None of them can believe that that is how a scared, 18 old girl was told that she had MS. When we told the podiatrist about that, he looked at my Mom and asked, “That wasn’t in this hospital, was it?!” My Mom nodded and said, “The very same one.”So, five years ago, when I still taught, I could just turn off one of the overhead lights well I thought and there were some days where I would teach wearing my sunglasses. My bosses at the time did not mind and they understood because they knew of my MS diagnosis before I started working there.

Yes, there are a whole lot of fluorescent lights on in Best Buy! I cannot wear sunglasses while shopping because I need to wear glasses with a prism over my right eye in addition to wearing my contacts now. So, for the three hours that we were in Best Buy, I just had my glasses and NOT my sunglasses on. When I came home, I realized what was going on with my eyes once I saw halos around the soft lights in my chandelier. I remember when LED lights first came out and they were cheaper do use in your house but they hurt my eyes so I can’t use them.

We made follow-up appointments with the speech pathologist virtual so I can remain in my house to have them and now that I have an iPad, that will be easier. But all of this is difficult for me to process! I told my Mom as she washed my hair that, “My body is shutting down.” She told me that hers is too and that everyone is but I don’t think she understood how hard this is for me! I’m just having a difficult time…

Handsome Plumbers

I had some plumbing done at my house today. A team of two handsome plumbers did it. I haveALWAYS have had handsome plumbers do work in my house though! A while ago, another plumber was also handsome but today the first handsome plumber I had in my house to do work on my shower when I first bought my house came back and he had a helper. I think the helper was kind of good looking! In fact, I know he is! I know because he is my son and he has the same genes as me and The other two plumbers (two of my brothers!)

My oldest brother had talked with my Mom to do the work in my house and they came by today! I will say that it was really cool to watch my son work and speak a different language (plumbing) with my brother the whole time they were here! I think my maternal pride kicked in or something! My house was their final job for the day so Sean stayed back and visited with me and my Mom for a while!

The work he did was in the kitchen sink so I really haven’t been affected by that. And the other odds and ends fix was the vent to my dryer. My Mom and I have been old-school rocking it for the entire pandemic like pioneers and hanging our clothes to dry. There are clothes in the dryer now that will not be need to be hung to dry and my Mom washed the dishes really quickly today! So I guess it feels like everything is coming up (Jenny Rios) right now!