Author: Jen Rios

So, I have a whole bunch of stuff to talk about and it has to do with the neuropathy that is insane in my feet! It hurts pretty badly!!! But, I can avert my attention to something else:

My brother Dave, brought over Mexican sweet bread a little while back. It was from a different place and one that I did not know so my Mom took a taste of the cookies before offering them to me.

She told me that the chocolate one was okay and I told her that I would have one with dinner. Sean was over and he took a taste of one of the quarters that she cut my cookie into.

Sean was leaving just before I started to eat and he told me that the cookie ‘tastes like cocoa wheats when it’s not as sweet.’

Well, I never made Cocoa wheats for Sean. My mom did. She made it for me when I was a child! We were talking about that today. And I told her I never made Cocoa wheats or Cream of Wheats for Sean and she kind of looked offended, as if I was thinking I was better than that.

Then I told her, “I never made it because you have to stand at the stove and stir it for a while. My Mom said, “It wasn’t for that long.” And I countered with, “But, when you’re disabled…”

But back to the cookie, it tastes EXACTLY like how I used to mix my cocoa wheats as a child! I saw myself maybe like in second or third grade playing in the backyard with my brothers, Jimmy and Dave on a snow day. My Mom and I were talking and I told her, “You know, when we would eat our Cocoa wheats with a piece of toast. If you get a nice piece of buttered bread, and the right amount of Coco wheats, it is delicious!!!” She didn’t know that we did that and I told her that my brothers taught me to do that

I thought about that today, rather than thinking about the neuropathy sensation that I am currently having and I’ll talk about that tomorrow. I am basking in my memories of being a child on a snow day!!!

Today, I was awakened by the feeling of both of my big toes being pressed. It hurt. I didn’t like it.

I used to sleep with my compression socks, but now with my disease progression, that doesn’t work out like that anymore. I spoke with my Mom and we are going to talk to the podiatrist about this.

it will really stink if I have to wake up until Tuesday with my toes feeling pressed because that was not a good way to wake up at all! I hate waking up in pain, but that seems that’s how it will be for the rest of my life…

#ItSucksToSuck!!!

#MSsucks!!! 😒😒😒…

I awakened early today because my Mom got her hair done. I must tell you that this twilight sleeping I did last night is rough with so much precipitation today!!! My body feels crazy!!!

I also awakened with a strange feeling in the heel of my right foot. It scared me because it almost felt like when I had pressure sores.

I told my Mom and then she got to work. I have told her so many times that I do not know what it is like to have a subpar caregiver. She is the best!!!

I had pressure sores from April to November 2022. I don’t believe the wound care nurses got here until July. My Mom took care of it and it worked out. I’m grateful that I could not feel how painful it was with my neuropathy.

I did have an emergency room visit I think in July because my dermatologist thought that I had Mercer. I was still wearing my compression socks then so my Mom pulled my compression sock off my foot and pulled the scab as well so they could see that I did not have Mercer. Thank God!!!

After that, I stopped wearing my compression socks until I could no longer do it. I was so grateful that my heels healed at that point, that wasn’t until November.

My Mom kept the visiting wound care nurse’s phone number in her phone. She called her today. She told her about my foot. I think the best thing is that I have a podiatry appointment scheduled for next Tuesday. The 20th.

My Mom was kind of freaking out this morning about wanting to call the pain clinic about my foot or maybe dermatology. I told her to just wait. I have an appointment with podiatry and we will discuss this then.

I love that Sonya, the wound care nurse remembered me and my sores. She says it’s okay to wait until Tuesday to discuss my feet. She also offered that she knows a visiting podiatrist. We called the office today.

What really shocked my Mom and me as well was that she called and that doctor is deceased. He was only 66 years old.The woman my Mom spoke to had worked with him for 33 years. That made me sad and I’m offering prayers for this doctor.

She texted with Sonya and she gave us a different doctor’s name and number. I told my Mom that we should just keep my appointment for Tuesday because that’s already figured out and will have that doctor in case I have further problems with my feet. I WILL have further problems with my feet and we will call the doctor when that happens.

I read an article today, well most of it. It’s only ben about a decade since I experienced this in the workforce. I know now that it was nerve damage and it was NOT razor burn.

I experienced this working. I was teaching Reading them so it was probably 2014 or 15 when it started to happen:

My under arms would itch!!! intensely!!! At first, I would just try to scratch under my arm with that hand so to not bring so much attention to it.

What it eventually turned into was me scratching both armpits at the same time with the hand that is on that side. And then I would cross my arms and scratch the opposite armpit!

My eyes would get really big and I would just exclaim, “My armpits itch!!!” Or, “Razor burn!” I would also tell my students that I took a shower that morning, so it was olay.

That was before I knew to rub and not scratch because the next morning was so brutal to apply deodorant!!! I would comment in my MS group years later to tell people to, “Rub vigorously and not scratch because that will break the skin!

I thought that I was being helpful, but what I did not realize is that itching was a sign of nerve damage! I was so much sicker back then, than I realized!

I realize now that I worked for too long because I was wearing chronically ill wardrobe three years before I was injured and then when I was, I needed a second knee surgery and subsequently had to stop teaching altogether.

#ItSucksToSuck!!!
#MSsucks!!! 😒😒😒…

I had a chocolate nutrition shake today because I drank all of the coffee ones! That was gross, but I did it! I have 12 vanilla ones until I get paid, but I am ordering chocolate from Amazon because vanilla is not available. Strawberry is too expensive now so I’m just going with only chocolate. Let me ’splain ya why I don’t drink coffee:

My Parents didn’t drink coffee so I didn’t grow up around it. My Mom started drinking it in her 50s. My grandparents drank coffee and that smelled gross to me as a child. They had brown coffee mugs that I remember when I was a kid!

I bought a Keurig for my house when Sean was 17? Maybe 16? He was a coffee drinker and I could NOT stand the smell of coffee brewing in my house so I got a Keurig so it only smells for a little bit!

I couldn’t stand the smell of coffee in my house because my summer of working at 7-11 before college scarred me way too much!

Brewing 40 pots of coffee when you are hung over the morning after a graduation party is disgusting and something you will never forget!!! I haven’t!!!

So, when I started working, I thought to start drinking coffee because that’s a stereotypical teacher thing to do?! Right?!

I did not realize how different people brew coffee until I watched it. I used to go early to work and get stuff ready by making copies in the teachers lounge.

I watched everyone at one point making coffee and some were good at it and others or not. My favorite memory of my time teaching is when Ms. Harden asked me who made the coffee. I told her that Rick did. He was our school leader.

What she said next, made me laugh and I and told Sean about!!! He uses that statement now while he’s making his own coffee!!!

When I told her that Mr. Guerra made it, she kind of laughed out loud and said, “Motor oil!!!”

I don’t think that mocha latte nutrition shake tasted like motor oil, but it didn’t taste good. I’m glad I’m back to vanilla now. That tastes good to me. It is easier for me. to drink my nutrition first thing in the day.

I think that I have been pretty much homebound since I got my power chair in July 2018. It’s only now that I realize that I am completely homebound.

it’s taking A LOT to get used to.

I first started seeing a nutritionist in November 2023. I think that we had very productive conversations! She told me how life was going to be now that I am chair bound completely.

I needed to adjust my eating. It wasn’t too much of an adjustment because eating has not been, “Easy or enjoyable” for me since the summer of 2019. She first wanted me to stop drinking Adkins shakes.

I have been on a diet pretty much for all of Sean’s life! It was difficult for me to eat in the morning so I would just drink my nutrition.

Sarah, my nutritionist, told me that I needed more calories. I decided to switch and she suggested Orgain because it doesn’t have dairy. I told her that I’m lactose ‘not a good idea.’

I got the chocolate Orgain nutrition shakes in January 2023. When I first tried it, it was disgusting! Sean asked me what I was going to do, and I simply said, “Drink this for the next 11 days. And then I will order the vanilla ones and hopefully they taste better.”

The vanilla ones tasted pretty good and Sean says they taste like ‘melted ice cream.’ I’ve been getting those since February 2023. I get them on Amazon.

Well, Amazon doesn’t offer them right now, they didn’t offer them in December either so I got two variety packs.

I did not realize that the variety was iced mocha Café, Sweet Vanilla Bean, and Creamy Chocolate Fudge. I thought it was Neapolitan so there would be Strawberries and Cream in that pack as well. I told my Mom to give me a chocolate one first because they’re gross, but she handed me an iced mocha café one.

I am NOT a coffee drinker!!! But just like I told Sean, I would have to drink eight iced mocha café shakes this time. I only have two more and it has been brutal!

The first time I drank it, I completely felt caffeinated so I’ve been drinking them every other day. Tomorrow it’s chocolate.

I do have to eat one of my bite-size Twix that Sean got me for part of my present on Christmas. Coffee breath is really gross!!! I force myself too have that little piece of chocolate so I don’t taste it anymore.

I can’t get over how much of a hard time I am having right now?!!!! We watched New in Town and we hadn’t seen it in a couple years so it was really funny!:

I hope that I feel better tomorrow so I can write about the Iced mocha café nutrition shake that I have to drink tomorrow?! It’s disgusting, but I need the protein!!!:

So, my eyes have been a thing for a while, which makes me nervous. I read an article from one of my MS emails. The author talked about embracing the ‘grayness’ of MS.

She spoke about her nighttime eye mask, which she loves. That fact, peaked my interest because my eyes have been itching and burning in the morning.

I ordered a cheaper version from Amazon and I liked the reason she’s wearing it. I got mine just before Thanksgiving. I did not start wearing it till the few days after getting it but now it is completely molded to my face.

My Mom took this picture of me the other day after she used the massage gun on my feet.Just so you know, I’m sleeping:

It’s like that now. And now my Mom has started putting Neosporin on my nose and cheeks because my face is chapped because of this cold weather and I blow my nose so much during the day.

I thought to make a joke about me being a welder or Yzma:

but I can’t joke about this. It’s getting serious now. I’m seeing a podiatrist on the 20th.

*I’m also wearing my mouth guard and my dentist. Dr. Kassem did not like that I slept with my mouth open. She told me that it’s not good for my gums. My hygienist, Sarah told me that I go to the dentist three times a year now to check on my gums. I saw her in December and I’m seeing her again in April. I told her that my dentist appointment is the one appointment where I DON’T get bad news.

So, I have had MS for 25 years and one week. What is going on?! I have never felt like this before in my life and it’s a little bit scary!!!