Author: Jen Rios

Idea!

Last night, as we were getting ready for bed, my Mom let me know that she had an idea! She was thinking about washing my feet last night. She told me that when she takes my socks off, it rips the scab off, she suggested that we loosen the scab a bit by putting a wet, warm compress on the outside of my socks.

I will say that it definitely hurts a whole lot when the socks come off of my heels so I was okay with trying that out. So that is what she did last night.

There are a couple of tweaks that we need to enact tonight. She only kept as a warm compress on my ankle for maybe like five minutes. It’s soften the scab a little bit but it still hurt the same amount! But instead of my feet looking like they did yesterday, it changed to this:

I am not sure that I ever will eat a tortellini noodle again. My Mom doesn’t think that’s a good comparison but I do! It lets me be removed from how much it actually hurts because it is excruciating and taking its sweet time healing!!!

Raw

I have not awaken crying for the past two days. I see that as improvement but today, my feet feel raw! You see, because I have to wear compression socks because I do not have good blood flow in my legs, every night when my Mom takes my socks off to wash my feet, it rips off the scab!!! I just grab my guts to handle it!

My Mom takes pictures every day of my feet to chronicle the progression and we will talk to the wound care clinic about future pressure sores because I think that’s part of the progression of my disease. I am just sitting here in pain! It feels like when I was a child and we would have to dry the dishes. We would have to dry the cheese grater and that was always difficult because my hand would always scrape the ‘cinnamon grater’ we never used that but it’s opposite the cheese grater.

So, today, it feels like my heels keep hitting the cinnamon grater side of the cheese grater. It hurts!!! When my mom showed me pictures of my feet today, all I could think of was tortellini. This is what it looked like:

It really hurts!!!

My First…

I am so exhausted but I wanted to let you all know that I had a first yesterday. I wore my very first Matthew Stafford article of clothing!

I think that I ordered this shirt in April which is months after the Super Bowl so it was half off! I had to get it! I rocked it yesterday and I was so excited to show Sean that I am actually wearing a Matthew Stafford t-shirt. 😍😍😍

This van rental excursion for this month was a bust because I did NOT get my haircut and I did NOT go to my eye appointment but I still think it was productive! Once my hairdresser had to cancel my appointment for my wax and cut, my Mom was able to take the van and get her hair colored! I canceled my eye appointment to go to the emergency room which proved to be a good thing because I did not end up in the hospital!

I told my Mom when she commented on the look on my face this morning that she got an award but I got at least another month of excruciating pain!!! Yesterday when I told Sean that this is my first Matthew Stafford shirt, this song popped into my head because who doesn’t love some Barry?!:

I’m going to try to make another appointment for next month but I really can’t see that well now and I’m tired!!!

Rando Tune #12

Okay, this song did NOT randomly pop up in my head but I have my Gavin DeGraw playlist on as my Mom is laying down and I am closing my eyes because we are both EXHAUSTED!!! I heard this song come on and I can see myself sitting at the dining room table in my first apartment! It’s such a jam and it’s spring time and I’m staring out of the doorwall at the greenery…:

I was living at our first apartment the very first time I took garbage out in my life! I was 23 years old and people who came over just took it out to the end of the parking lot when they left. I had a bag there for a while so I took it myself! But then Sean got older and we moved to a different apartment where it was just on the other side of our carport and he could do it. So I didn’t have to do it anymore!:

The MOST 1990s Scene!

Sean came over to be with Leia when he got out of work while we were at the emergency room. She is on steroids that are making her go pee a lot and we didn’t want to leave her in her cage.

We were at the emergency room for just about an hour and we had been seen by the doctor and he said that he didn’t Need to do anything further and we just need to keep doing what we’re doing. We picked up Panera on the way home for all of us.

Sean was watching basketball when I got into the house. We talked as we ate and then my Mom was going to take the van back. The NBA championship was on and we watched it. I told Sean that with my glasses on, I can see everything. That was not the case years ago when we watched basketball when he was in high school.

So, the Celtics are playing the Warriors and as I was talking with Sean this song came on that was playing in the stadium. I told Sean that it was the most 1990s scene!:

The Celtics and Montell Jordan?! And then a little while later, my 1990s scene was confirmed when I heard Pearl Jam:

The Celtics were on a streak in the beginning of the game but they did not sustain it and the Warriors won but I told Sean that if the Celtics won he would have to post this song and some social media site:

The Celtics did not win but it was really cool to remember this time in my young, Able-bodied life!

A ‘Wound Care Specialist’ Award

I have stayed in contact with my dermatologist regarding these wounds that I have on both of my heels. Yesterday, she contacted me because pictures I had uploaded a few days ago just got to her. She called me and left a message to go to the emergency room.

I listened to that message late and responded that we would go today. That’s what we did. I was very concerned when we left to go because it has been over 21 years and I have never been hospitalized because of MS. I wanted to keep that streak alive but I knew this may need a hospital stay.

We checked in to the emergency room where my dad died. I thought it would be harder than it was but they changed everything so it doesn’t look the same as it did 16 years ago.

I used to love these bracelets when I was a kid! When I’m 40, not so much but the doctor came in and looked at my sores and told me that he needs to do nothing further because my Mom has it nicely in hand! He extended my prescription for a week and he told me my Mom should receive an “honorary ‘Wound Care Specialist’ Award.”

Rando Tune #11 OR a ‘Mom Song’

Sean stopped by today after he got out of work and he put the second air conditioner in his bedroom because it is crazy hot!!! He sat and talked with us after the air conditioner was in and he told me, “I heard a ‘mom song’ today and 98.7. He told me that it was this song we heard all of the time in the car. He told me that 98.7 plays a lot of ‘mom music.’

I have never owned this song on a CD but we DID hear it a lot on the radio when we drove somewhere:

#MyGirlL: ‘Sickie’

Well, I haven’t written about this because I’ve been so preoccupied with the excruciating feeling in my feet but the day I started treatment for my staph infection, she started her medication as well.

She went to the vet because the shot we had given her last month for her allergies was not working and subsequently she scratched her coat raw!

When my Mom got home with my medication, she said to both me and Leia, “Come on girls, it’s time for your medicine!“ she is a mess! She is on steroids and she also needs eyedrops twice a day and ear drops once a day for the next two weeks. We’ve been taking our medication for six days so far! She’s a little ‘sickie’ but I love her!

Change of Plan

I just received a message from the woman who cuts my hair and waxes my eyebrows. There was a change of plan. She understandably had to cancel. I get a second to breathe now. I can relax a little bit until my eye doctor appointment tomorrow.

The scab on my left foot came off yesterday when my Mom took my socks off to wash my feet. My leg hurt all day and when I found out the reason why, I was reminded of reading the third The Hunger Games book. I remember at the very end of the book, it was described that Katniss’s wounds were tended to and it hurt Because the new skin was so tender. I remember cringing when I read that because EVERYONE can remember how that feels! That’s how my left heel feels right now. My Mom told me this morning that it looks like the right scab may peel off tonight!

What am I, eight years old?!

‘Go-Time!’

My Mom just left to pick up the van I rented to get my haircut today. Isn’t it crazy that I would pick a day that so extremely warm to do this but I guess ‘it hurts to be beautiful’ as my Mom would say when I was a kid?! When she comes back, it’s go time and I’m a little bit nervous.

Doubleheader this month because I have an eye appointment tomorrow. Wish me luck! And I have a neurology appointment On the 27th of this month.