Month: June 2022

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.

A Successful ‘Bat Signal’

This morning, as my Mom was washing my feet. They still look so bad and they still hurt so badly! A couple days ago, I asked my Mom to turn down the air conditioning (because I am still rocking my window air!) I am NOT embarrassed because there ‘ain’t no shame in my game’! I noticed how tired she looked as she walked from the kitchen to my bedroom to turn down the air.

It was at that moment when I decided that I needed to do something so I sent out a ‘Bat Signal’ to my big brother, Dave and I got an immediate response:

As my Mom was attaching the leads to my knee, we heard a lawnmower. She thought it was our neighbor. She saw that someone was cutting our grass and it wasn’t until after we are finished that she went out to see who it was.

Then, I had to tell on myself. I told her about sending the bad signal to Dave. When we were finished and she went outside, my brother Dave, my brother Ray, and my nephew Christian were there. She was so happy! They all did an excellent job and I texted my brother yesterday after they were done and after he left because he stopped in to talk with me for a little bit:

It felt really good that I was able to orchestrate this bat signal for my mom because she does love a nice lawn. I do too but with all the changes with my disease, that has taken a back seat. It really feels really good that this Bat Signal was a successful one!!!

Direct Conflict

Not a good sign.

It is not a good sign when you open your eyes and your Mom comes into your room and asks how your feet are feeling and all you can do is look at her with tears welling in your eyes and shake your head ‘no.’

Well, that’s what happened today when I woke up. And here’s the reason why:

I have holes in both of my feet.

There, I said it. Basically, that’s what it is. I started having problems with my feet in mid April and went to the doctor just after Easter. Because I was sleeping in my chair with my shoes on for four days, I got ringworm. I got over the embarrassment of that diagnosis and was prescribed medication. My Mom said that I needed to be on an antibiotic that day!

They did not prescribe me one and we left and my Mom started washing my feet both at night and in the morning. It was holy Thursday. It has been holy Thursday since then! This is killing my Mom! Absolutely killing her! It’s painful to watch, ALMOST as painful as my feet feel right now!

When we went to the doctor again about my feet being really painfully horrible, we asked then and the doctor looked at them and said they weren’t infected but her mentor told her to take a culture.

The culture was taken on Monday and Thursday I was notified that I had a staph infection!?! Hence, the holes in my feet. I just can’t get over that if I was prescribed the medication at my appointment I would have two days of medication in me so I could prevent the two holes that are in my heels right now!

I haven’t felt my feet at home for 20 years but I never thought them like this when I could feel them! It’s terrible! My Mom and I made a plan when we went to bed last night, she was going to leave my socks off to let my sores air out after she washed my feet and then was going to put my socks back on in the morning.

But here is where the direct conflict comes in because of the holes on my feet. I have been wearing compression socks full-time for about six years. I HAVE TO wear compression socks because having had MS for 21 years, blood does not flow properly in my legs.

But with a staph infection, you have to let the skin ‘air out’ for the skin to heal. Now, I fall to sleep with my feet airing out so my sores can heal and then I wake up in the morning to a tingle in my feet and that’s when I let my Mom know it’s time to get up.

As my Mom is washing my feet, the tingle changes to a burn! I have to deal with that until she gets my socks on completely and she transfers me back to my wheelchair from my bed. So, I deal with this direct conflict every single morning even in my very comfortable bed. I cannot enjoy it fully right now because of my feet. This is just a mess!!!

Tired and Frustrated

The latest developments with my feet have left me speechless. Speechless and in pain. I wonder if that speechlessness and that pain was necessary or could it have been prevented?! That’s how I am thinking about it. I think it could have but let me tell you what’s going on:

I had my first doctor’s appointment regarding my feet the Tuesday after Easter. That means that it was mid-April! (Just keep that date in mind as the story unfolds). I was diagnosed with ringworm at that appointment and as I wrote before, that was because I was sleeping in my chair because it was too painful to sleep in a flat bed.

My sores were open then and my Mom asked if I should be put on an antibiotic. I was told that they were clean and I did not need it. So then, holy Thursday was instituted in my house and that is when this whole ordeal started killing my Mom and me.

I was on medication for the ringworm so it was going to get better. But things have to get worse before they get better, I guess, right?! So the ringworm on my heels started getting worse and I started sending photos to my doctor asking about getting an antibiotic.

I was told to make another appointment. If you guys have not figured out by now, getting out of my house is a BIG ordeal for me and my Mom! It’s a lot of work on both of our bodies and I need to rent a van to go anywhere! We figured that I was on the medication and my Mom was washing my feet so vigilantly that it would be okay.

But then my Mom took my socks off one morning and just looked at my feet and said, “Hm.” That was a very concerning sound and I ended up making an appointment with a different doctor at a different location in dermatology. It was the first available appointment.

I was seen on Monday, June 6. I still have the same problem from April 19. My Mom has been keeping my feet clean this entire time and she again asked about an antibiotic for me. The student resident shook her hand and said that my feet don’t look infected. As she was consulting with the doctor she was working under, the doctor told her to take a culture.

I had been staying in contact with my doctor‘s office this entire time. On Thursday, I was notified that I have a staph infection. WHAT?!!!! Couldn’t does have been prevented with an antibiotic? That my Mom and I asked for? Multiple times?! Why did we have to wait for the culture results?!

As soon as I found out I had a staph infection, my feet irruptted into flames until my Mom went and got back here with my prescription. What happened to preventative medicine?! I recall getting so many prescriptions for antibiotics that I never even got filled! They used to hand those out like candy!

I’m really at a loss right now! Even with five doses of medication in me, my feet still really hurt!

I am left here questioning what is wrong with our system?! I feel like I am being punished because there’s so much drug abuse so they want to be certain that the medication is necessary. But in the meantime, I had two days of my infection ruminating and getting worse!

I don’t think the doctors in the dermatology clinic understood that a person who has had MS for 21 years has different needs and needs preventative medicine!!!

I am going to the eye doctor in a few days and I remember last year that they all marveled at how well I control to my power chair. Every single doorway in my house is completely damaged but it is a long learning curve to learn how to control the joystick on my power chair!

I’ve sat with this for a while and I am not sure how to feel about it. I feel like doctors should know what to do and in this instance, I’m really not sure that they understood or even understand for the future. I will be happy when my feet are better but I can’t see them getting there right now because everything in my body takes so long to heal! I’m just so tired and frustrated!