Author: Jen Rios

I’m seeing three different doctors this month. I just saw my podiatrist, I virtually see the pain clinic doctor tomorrow and I get a bone density scan on Thursday. I’m already tired. But this is a 3 fer, so I am focused and dialed in.

So, I think I got a podiatrist appointment at the exact moment that I needed it! I didn’t even know that I needed it!

My Mom and I figured it out. I had been wearing tennis shoes from a running store since about 2020. I would wear athletic socks when I wore them. Those same socks do not work out when I’m wearing my current shoes my ‘tap shoes.’ I am wearing those ‘tap shoes’ now because my feet are sick.

That is the reason why my toes hurt so badly the other morning! I was wearing Sean‘s thin dress socks that he had from high school and because they were not thick enough, my toes started to attack me because my nerves were going insane!!!

So, this is what we have to do now. When my Mom puts me into my bed, I have to wear the dress socks because I have to wear my shoes to transfer. When I am going to sleep, I already have my compression socks off.

But then when I get into bed, she has to change my socks because I need that thicker sock to protect the nerves in my toes. We do the inverse in the morning! She has to take my thick socks off and put my thin socks on before she puts my shoes on. And lastly, once I am seated in my wheelchair in my living room, and have taken my morning vitamins, she puts my legs up to keep my heels up and notnot resting on anything. That’s still a thing from my pressure sores from ‘22. It will be that way for the rest of my life.

With these extra steps with my socks, Itold my Mom that I feel like I am in Mr. Rogers neighborhood!

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.