My Mom took me to get my eyebrows waxed and my haircut today. I talked with Christina and let her know that I hadn’t been out of my house since the last time I got my my eyebrows waxed and my hair cut last month. She was surprised to hear that but I told her that wheels and snow don’t mix and I don’t mix with cold. She listened to me with a sober look on her face and I think it made a little bit more sense to her.
As we left the salon, on our drive back to my house, we saw a drive-through Girl Scout cookie booth. Well, OF COURSE we had to stop! This is what they gave me:
We arrived to my house just as Sean was coming home from work. He brought my motorized chair out and he saw the box of cookies on my lap. It wasn’t until he looked inside the box that he realized I bought him three boxes of Samoas and I bought myself three boxes of Thin Mints.
my mom took a box of Samoas with her but I don’t feel well enough to eat a sleeve today so I put my boxes in the freezer. I let myself know that they are FOR EMERGENCY PURPOSES ONLY!
As I waited for Christina to finish putting dye on a woman’s hair, I grabbed my phone and decided to check out my YouTube feed. This is what I saw!:
I took a screenshot of what I saw because I really liked what I saw! That’s more like it! That’s what my YouTube feed SHOULD look like and it hasn’t for a while.
I want to start off this blog post by emphatically saying that my Mom, as my caregiver, takes EXCELLENT care of me! It took me a number of years to come to terms with and accepting the fact that a caregiver was necessary for me. I’ve said before that I thought me and my Mom were just hanging out but she was really taking care of me. It was after my meniscus surgery that I really realized and accepted this fact.
My latest surgery, coupled with my progressing disease, lead me to my motorized wheelchair. I’ve had it for over a year and a half and it has proved most beneficial for me! I sit in a wheelchair all day long. The fact that I have a motorized chair allows me to recline and raise my legs. Raising my legs is imperative for me now!
So, here are the facts: my Mom takes excellent care of me and I sit in a wheelchair all day long. We discovered last night that even with excellent and preventative care, pressure sores happen. I have a pressure sore. I’ve had them before and it is not fun at all! They are painful and they progress to major problems very quickly! Here is where my Mom comes in! She is excellent at handling this.
We use a combination of ointments and creams to help relieve the pain and aid in it’s healing. Our use of an ointment that is paid for by Medicaid and I have also purchased a different ornament that really helps with the healing! I am so grateful that I have my Mon as my caregiver to take care of this!
I purchased these jars of zinc oxide on Amazon and with it’s generous application, these sores seem to get a lot better and a lot quicker!
I recline in my chair most of the days to relieve pressure on my bottom because that is where the pressure is! Given that I sit all day long, it’s necessary to address the pressure sore as soon as we discover it! So, today, as my Mom addressed the sore, she started to say, “Sus Nalgas” and she would begin to giggle. Once the sore was taken care of, she constantly said it and laughed. I knew what she was saying because I had heard her and my aunts say it often as I grew up. Translated, it’s Spanish for: “Your buttcheeks.”
Well.,. She’s NOT wrong! I guess it’s one of the perils of being a wheelchair user and having MS for 19 years. I’m so grateful that my Mom takes such EXCELLENT care of me in times like these!
This morning, as I waited for my mom to come over to help me and burn, I put my U2 playlist on shuffle. This is the song that I heard:
A flood of memories in an instant came rushing to my mind. The album came out during my first few years of teaching. I was semi-able-bodied back then. The most vivid memory is of a comedy show that we saw at the Fox theater. I had decided to be in my wheelchair because there was a long line wrapped around the building. We took our places at the end of the line and I will never forget a young man came up to me and asked me if I was going to the show.
I nodded and he motioned for me to follow him. I looked at the rest of my group and we all followed. He took us past the front of the line and to better seats than we had bought tickets for. I looked at my friend unsure of what was happening and I looked at the guys we went with and told them that, “I guess this walking stuff is for the birds.“
One of the guys clarified and told me that it actually isn’t but we got really good seats and another guy in my group brought me a beer. We heard this song on our way to a bar. It seems like a lifetime ago!
My son drove me to the pharmacy on Saturday. It really sucks when you are physically disabled but request medical information that is personal to you. You have to be present to receive it. So, Sean took me on Saturday. As he was helping me get back into his car, my knee popped out. It STILL gets dislodged upon transfer. We went to a pharmacy close to our house so I told him that we will just pop it back in when we get home.
Once he pulled into our driveway, he got out of the car and pulled my leg out. He raised my ankle as he has seen my Mom do 1 million times. He slowly raised it up until he heard a hollow pop! He smiled and told me that he had never popped my knee successfully in before, my Mom always does that.
I liked looking at the glee in his face and the fact that he was so proud. I am so proud of him for so many reasons but I liked that he got my knee back into place as well!
I think it was the first dinner I made for for Sean and me in our second apartment. It was the fine dining of cut up hotdogs, broccoli, and macaroni and cheese. He was the one to eat the macaroni and cheese because it was when I first Started the no carb thing. As I sat at the table and we ate dinner, after grace, Sean looked at me and said; “You’re a good cook, Mom.”
I looked at his small, innocent face and I told him, “ Thank you but you don’t even know!” I have never been in a great cook. I just prepared food to sustain us. Of coarse a four-year-old would think I was a great cook. It was his favorite things and he didn’t know that there was better out there.
I thought of that when I watched a movie at my Mom’s recommendation on Netflix:
Now, my Mom’s track record is hit or miss on Netflix but I watched it so we would have something to talk about. I dug it! The excellent cooking of Hassan reminded me of one of my favorite movies, Burnt.
I watch it so many times because of my thing for Bradley Cooper but both Hassan and Adam (Bradley Cooper) end up being three Michelin star chefs. When watching the movie, that I finished yesterday, I couldn’t help but to think about Sean telling me that in our second apartment. I thought it was a solid movie and I’m sure I will discuss that with my Mom today.
As things have played out, I no longer can make dinner for us. #MSsucks! I just like putting my Christmas tree up, I have more of a supervisory role now. I have walked Sean through making my brownies but I can no longer do it myself. I had just started getting into crock pot cooking because it was easier but now, I am just a supervisor for that as well.
i’ve never LOVED cooking but given the fact that I can no longer do it, it hurts. I wish that I had taught Sean to love it but I couldn’t do that either because I did not authentically love it. I did, however, instill a love of reading in him! He has fallen away from that in his teenage years but I don’t think that that love can be entirely lost. I hope.
I’ve been staring at my ACL reconstruction scar for a while now. Each time my Mom washes my legs and changes my compression socks. I stare at it because I remember being SO concerned after I first had my first knee surgery. I was just 17 and afraid the scar was going to be quite unsightly. I asked the nurse who took my stitches out if I was going to stay as angry red as it was. She told me it would fade to white most likely.
I remember asking her what I could do to ensure that that happens. She told me that for the first spring and summer and every time I was outside, I should cover it with Balmex. So, as soon as I was cleared to drive, I drove to CVS by my house and bought a tube. Each time I was outside, I squirted the tube onto my knee like I was loading my toothbrush quite amply with toothpaste.
It has faded to a white now, some 20 years later. I also have two dots, one on either side of the scar that were the ports for the scopes they used in my surgery. Those also have faded to white, almost barely visible. Now, after having meniscus repair surgery and a Tenex Procedure also done on that day, I have two more port scars, just two extra darts and I also have a port scar on the inside of my shin. It’s going on three years since I’ve had that surgery and I have taken no precautions with the scarring because I wear compression socks all day so no one can see anything and scarring is it important to me anymore.
I stared at my knee when my Mom washed my leg and I have decided that all of my scars, they all look the same. I think about how different I am now than I was when I first had my first surgery and how I am not afraid of any scarring. Sometimes, I kind of wish stuff like that still mattered but now that I’m older, I know it doesn’t.
Regardless of precautions I took with my first knee surgery and not taking any precautions with my second knee surgery and with my Tenex procedure, they all look the same!
OK, let me break down for you why last night was, “The Best day of my life!” I need to begin my explanation probably somewhere in the late summer when Sean and I were both sitting in the kitchen eating breakfast. I was wearing my newly purchased/received Georgia football T-shirt:
I really liked it because every T-shirt I get from Fanatics is really comfortable! This fact is really important to me because having MS makes you more sensitive to fabrics among other things. I did none on a university of Georgia T-shirt and I liked this one. Because I am a Michigan fan, OF COOURSE I had to see if they had a comparable shirt.
I had just found out the night before that they do. I asked Sean if he would rather have a gray Michigan shirt with blue writing shirt, like the one I was wearing, or a Navy Michigan shirt with yellow writing. He thought for a moment and told me that he would prefer the navy T-shirt. I nodded thinking that I’ll take the gray one! So, for Christmas, I bought him this shirt:
And therefore, I bought this shirt for myself:
As Sean opened his present, I told him that we will coordinate days of wearing the shirts so that we could be, “Matchers.” and he smiled as I laughed! Well, fast forward to last night. My Mom had arrived to my house late to get me ready for bed. She needs to come over to take the patches for my tens unit off of my knee so my skin doesn’t break down during the night.
Because she had come over late, we were just finishing up as Sean came home from being out with his friends. We decided it would be easier for Sean just to put me into bed because he is taller and stronger than my Mom. Sean took his jacket off as I was sitting in my wheelchair beside my bed. Wouldn’t you know?! He was wearing his Michigan football T-shirt at the same time I was wearing my Michigan football T-shirt!!!
I grabbed my shirt and pointed to his shirt, smiled, and begin to laugh! I told him that this was the best day of my life! He kind of chuckled at my extreme excitement for us to wear the same shirt. As he put me into bed, I told him that I have been waiting since Christmas for this day! He kind of shook his head and chuckled.
what can I say?! Simple pleasures man! I thought about writing a blog post recounting last night and I thought of that American Authors song.
This song came out in 2013 so when I was working at Barwis with Adam (Phil) it was common for the song to come on the radio. When I heard it one day, I said to Phil that, “I like this song!” Phil told me that I didn’t know this song and I corrected him by saying that I teach middle school and my son likes this song as well. For good measure, I counted along with the music, the part where they say, “2,3,4.” I only thought of this instance because I told Sean last night that sing us wear the same shirt on the same day was, “The Best day of my life!”
In observance of leap day, I watched one of my favorite movies, Leap Year. What better way to start my birthday month festivities coming up then watching a movie with Irish accents, The Cliffs of Moher, Claddagh rings, and castles? Although I am doubtful/fearful that I will ever make it there to see it’s splendor and get my Claddagh ring in person, I can dream.
I watched an ad a couple years ago that explained that an adult should read 45 minutes a day and therefore, read most books in one week. I really liked seeing this late in the night before I went to sleep. That’s why I started last year to avidly read because I was no longer working.
I had a goal of reading a certain number of books last year but because of the power outage in late May and my subsequent displacement, I was unable to reach that goal. After the power outage and displacement of a week, I could not focus on the pages in front of me to be able to read.
It really frustrated me but I realized that that was something new that was happening to me. Reading proved to put a lot of strain on my occipital lobe. I saw green, “Leopard print” on the pages which made it impossible to read.
it hurt me most greatly that this was happening. Reading has always been my love! I restarted my goal of daily reading for 45 minutes each day with the hopes of reading my goal number of books. I started a book on January 1
I had started reading it last year but when the power outage happened, I had to abandoned all of my unfinished books. So, this year, I told myself I was going to read this book! I restarted it on January 1 and expected to be finished well before today. Sadly, I am STILL NOT completed! The reason for this is that although I tried to read every day, some days I could only read for 10 minutes before the ”Leopard print” that I saw forced me to stop.
it will take me a lot of time because I am not yet halfway finished. But, today, for the first time since last May, I was able to read for a full 45 minutes! That made me feel really good! I hope I can keep it up but either way, I wanted to crackle that today I did just that! It’s all about simple pleasures, man!
