Author: Jen Rios

A Real-Time Wince OR So Many Things Have Changed

This picture is from October 18, 2019 at 2:13 p.m.

I randomly saw this in a post I re-posted. I didn’t really pay attention right off. But now, I keep looking at this picture. I get a real-time wince because so many things have changed!!!

I didn’t realize that I have been using my extra firm therapy putty since October 2019. I will replace my current therapy putty ball on December 18. I do that every six months.

I’m lucky that Amazon sells them in a two pack so I don’t need to buy them until next year before June 18.

What I really could NOT get over is the fact that my nails were so long! I remember my nails being that long! I used to love washing my hair in the shower, but I don’t even wash my own hair anymore?!

I remember that Phil used to tell me that I had ‘claw nails’ and I remember once when Sean calmly recollected me taking my contacts out with my nails. I would just pop them out. I remember he said it off the cuff and I remember being able to do it which I no longer can do! I cut my nails to the knobs every two weeks. At least my mom died. I can’t do that for myself anymore either.

The second thing that I could NOT get over after seeing This picture was the fact that I was wearing shell toes. Back when I could easily buy Adidas shall toes in kid sizes. My shoes were like $19.99. I want to say the last time I bought a pair, I think they were almost $40 or something like that.

No, it was my Chucks that were $19.99 but I eventually had to stop wearing those. I stopped wearing shell toes five years ago and I got shoes like my Mom but now, I have to get a different pair of shoes. What is causing me to wince when I see this picture is the fact that I am going to buy special shoes from a specialty shop.

These shoes are not kids shoes or even normal shoes for the regular public. This means that they are more expensive! I’ve already researched them online after I asked my Rolling with MS group about the kind of shoes they wear.

I found a store where these types of shoes are sold and it is at 12 Oaks mall. I used to LOVE going to the mall when I was in high school!!! This is a really big deal because I am homebound so this will be DIFFICULT for me but I only focus on my Mom when we leave the house.

At least I’ll get to see the 12 Oaks Christmas decorations?! I hope I see them, but that’s not really important, going to the store to get fitted as what is the focus of this outing. I’m nervous. #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…

My Eyes

I have been thinking about this for a pretty long time. I guess it was always going to be this way, and staring at 25 years of having MS. Okay, it’s starting to happen now.

We watched The Emporer’s Groove not too long ago, and there was a specific reason I wanted to watch it! Aside from being hilarious, this was what I wanted to see:

I remember them doing this when they went to their Secret Lair. I wear goggles like that every night when I sleep now. I started wearing them the night before Thanksgiving. I woke up on Thanksgiving with my eyes NOT dry and uncontrollably itching.

I read an article that talked about ‘leaning in the gray area of MS’ and the woman who wrote the article talked about her eye mask and she said, just like this, “(I kind of love it!)”.

Reading that reminded me of 2003? After I saw an episode of ER at my Parents’ house because that’s where I was living at the time.

There was a young doctor and he had a sister and the sister hooked up with an older doctor. His sister had MS and she had Canadian crutches. That’s what gave me the idea to get mine! I clicked on the hot link in the article and they had it available onAmazon for $80. Wait. What?!

I also remember the wheelchair tech who worked on my chair because I needed something and he told my Mom to get it on Amazon and to not order it from the company! He told her that ordering from the company is too expensive!

I got my goggles on Amazon and they cost me $12.99. (normally $14.99 but as a Prime member, I got two dollars off) They arrived on November 23. it took me a moment. I knew that this was a big deal! I put them on on Wednesday night so I could wake up on Thursday feeling better!

My eyes did not itch or hurt as much! It took a week for it to mold to my face. And once I put it on now, it is completely black. Now it’s comfortable!

My Mom helps me because she keeps it on my nightstand so when I’m in bed, she can give it to me while I am already at zero gravity with my pillow under my head.

I think it took about five days for me to sleep through the night with it on. It does feel a little foreign.

With the change of my contact lenses, Dr. Harris said that I would not need to use re-wetting drops. I STILL use them because my eyes are sick so I NEED them!

I am rolling with all these changes and I don’t like them and it does not feel good at all! I’m scared! Next week we are going to see about my shoes. That’s different now too… #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…

A Quarter of a Century?!!!!

Yesterday, as we were getting ready for bed (which was really today, early this morning), I said to my Mom, “In 26 days, I will have had that MS for 25 years.”

I gasped immediately when I heard myself say that! Has it really been a quarter of a century?! A single tear rolled down my right cheek. On the 28th of this month, it will be a quarter of a century since I was told, “Look, you have MS, you’re going to go blind, and then you are going to die.”

I still have to write about what’s going on with my eyes, but I’m not blind yet… #ItSucksToSuck #MSsucks!!! 😒😒😒…

My CousinT Shannon

My Mom, wanted to hear a song today. She said, “What is that song, Five hundred twenty…?”

I interrupted her and knew that it was ‘525,600 minutes.’ She was surprised that I knew it and I told her that me and my cousinT Shannon sang that ALL THE TIME!!! Her and her husband took me to see it at the Fox Theatre while I was still in high school. We listened to this one a few times:

I got lost in thinking about us singing in her car. I told my Mom that I NEED to post this song because she loves it and I love Wham! and she does NOT but we listen to each other’s favorite songs when we hear them. Well here it is, this is her fave, NOT mine:

Winced

I went from taking my supplements three times a day to taking it four times a day. But then, my pills were not fitting into the container very well, so I decided to change to a ‘ninja star’ pill box put that ended up not working either after a little bit..

That pill box was pretty short-lived because it only lasted a few months and now I got this one:

I am not going to lie because seeing this made me wince a little bit. Sean came by today to bring up the Christmas tree and I showed him my newest pill box.

I first showed him the three pill day because that’s what my pills used to be. Now, I use that to store my Saturday night vitamins because that’s when I pillage so all of my pill containers need to be empty.

Then, I showed him my newest box. It is so big!!! I told him it looks like a laptop! He kind of chuckled and said that it looks exactly like that! I opened up the lid and he said that it looked so organized. That it does, but I still winced because it’s so big?!!!!

This just feels like a culmination of me getting sicker and sicker… I see my naturopath on December 16th.

“My Lips Taste Good”

Today is the day after Thanksgiving, which means it’s ‘changing of the guard’ for my chapstick. To my dismay, Burt’s Bees has discontinued the flavor, Ginger Spice.

That’s my, “Abuela Chapstick”?!!!! So I thought this would be the last season I will use it so I will just finish it. I was supposed to start something new on December 1, but I won’t this time.

I wanted to see how much Chapstick I had left so I pushed it all out and thought to push it back in, but it won’t go back in so I have a “Bag-o-Chapstick”

That’s all that’s left of my Chapstick that reminds me of my Abuela. I can still see and smell her house! I can hear her chanclas shuffling across the kitchen floor.

I think that house has been gone since I was in middle school. When I put my Chapstick on this morning, I smiled to myself and told my Mom, “My lips taste good” I thought of her and Montgomery Wards and the show Alf with fondness…

Well Worth it

Today was Thanksgiving leftovers for dinner. My dinner consisted of a protein shake, corn casserole, cheesy potatoes, stuffing, and to finish it off, strong with pumpkin pie!

My Mom looked at me and said that I don’t look like I am feeling well. I looked at her kind of exasperated and I said, “Of course! We left the house and I’m still trying to get okay from that and I just ate a bunch of carbs and sugar and NEITHER one of those are my friend!!! But, I ate them anyway!!! They were so good!!!

it was well worth how I am feeling right now! I won’t eat like this again until Christmas.

Enough of a Taste

My Thanksgiving meals are modified now. I can no longer eat turkey and that wasn’t a really big deal for me anyway. Now, sides are made for me and they are delicious!

My Thanksgiving meal first and foremost consists of a nutrition shake because I need the protein before I can enjoy any food. I had cheesy potatoes, sweet potatoes, and stuffing.

MY Mom hasn’t been making her pies for a while, and that was a staple for me for my entire life! Well, turns out that my brother, Ray, has taken up that mantle and I had the MOST delicious piece of pie tonight!!!

I only ate half of what was given to us for my dinner. I have leftovers! That’s what I’ll be eating tomorrow. As I was eating my pie, I told my Mom that, “It feels like I’ve had Thanksgiving dinner!”

I haven’t been able to gorge myself for years as a power chair user. I just got enough of a taste today and I am content most definitely content!