A Facebook friend posted this and it made me laugh way too hard and I was back in my dorm at WMU because this song was my wall mate, Marissa’s favorite band:
I may as well post the song here right now because I am not sleeping…:
I thought about this song late last night. Well, actually, it was early this morning. Probably about 1 o’clock! I know that because I texted this video to Sean and asked him if he remembered this one because this song was playing in, The Fsult in Our Stars. As we were leaving the theater, I mentioned that I liked this song to Sean and he agreed that he liked it as well! I was still in a manual chair back then and was still driving:
I think that it is really strange how thoughts of these memories change so much over time. At least my perspective has…
Sean took Leia and my Moom to the vet to get a blood draw for Leia. They did this while I slept and she was given another dose of steroids. She is sleeping now. I can already tell her body is starting to not feel good!
When she’s on steroids, sometimes she will just stand next to my wheelchair frozen and I think that’s because she knows that I know what it feels like when your body does not feel good! She is standing by me looking for moral support and I want just rub her back and apologize because I know it hurts!
My mom says that she looks like a hyena because her skin is pink and we know that the steroids will take that and her itching away and next week, they will tell us what the blood draw findings were in terms of what her allergies are. I hope we can figure this out!!!
I thought to wait until tomorrow morning to go on to my Vanilla Bean Chapstick but I couldn’t handle the scrape on my lips this evening so I changed it up mid day. I never do that but I was done with the Cocoa Mint and I still needed to wear Chapstick so this is what my winter months Chapstick looks like now:
I have been in a funk since talking with my nutritionist on January 11. I thought I would be better after I talk to my Speech Pathologist on January 25 but that is NOT the case!!!
I have been listening to my Gavin DeGraw playlist on loop since then. I have a discovered that when I am in a really big funk like I was and still pretty much STILL AM, I listen to Gavin DeGraw. That was the album I listen to most often when I first bought our first apartment. That was when I became a grown-up.
I have shared Gavin DeGraw songs so much on my blog! I was searching through my Apple Music playlists and I noticed that there were some duplicate playlists. I’m not sure how that happened but I deleted the duplicates. I came across a playlist that I didn’t know what was in it. It was titled, “Seanie” and I know that Sean does not call himself that so I clicked on it and I saw the two songs that were contained in that playlist! That’s why I named the playlist ‘Seanie’!!!
The first song on this playlist:
This song was my jam in high school! And because I had Sean two minutes after high school, I still had the CD in my room! I can remember from the earliest days of going to the grocery store with my infant in a car seat carrier! I have always pictured Sean and I dancing to the song at his wedding one day but as my disease has been progressing quite steadily, i’m not so sure.
The second and last song on the playlist:
This song was the first song that played in the car that I bought at Bill Wink Chevrolet dealership that closed not too long afterward. This song was playing as I drove down Ford Road to get back to our second apartment and I pulled into the carport just as this song ended.
I was wasting time on Facebook earlier today and I saw this reel and it brought back a flood of memories and I started to laugh! Let me explain:
I think it was 2014 and just before Adam left. Adam was my trainer at Barwis and they procured a, “Stander.” Adam and I worked together to get me to a point where I would be able to stand in it. I think the goal was ten minutes.
Adam would transfer me into the stander and then there was a crank attached to it and each time he cranked it, I would stand up straighter. I think that I had been wheelchair-bound at that point for a decade so cranking it and forcing my body to stand up straighter did not feel very good at all!!!
I was determined and I understood that I needed to breathe through the pain and not resist it. I have always liked the movie TheCount of Monte Cristo and I remember this speech and I would breathe each time he cranked the ‘stander’ I would yell, “Do your worst!” It got progressively harder the closer I got to being fully standing and once he was done cranking it, I would say, “Do your worst… for I will do mine!”
I don’t know if Adam ever saw that movie but thinking about it now, it’s definitely worth a rewatch for me!!!:
Things have been coming fast and hard in terms of my disease progression and my subsequent losses. I have yet to have things slow down but I am definitely praying for it to!!!
Thinking about this afternoon, I definitely hope that this is a one off” for sure! I have been wearing contacts for the past 28 years. Just last night, I reminded my mom about how my son used to notice that I would pop my contacts out of my eyes with my long fingernails.
no, it is necessary for me to keep my finger nails clipped to the knob because I cannot control my fingers enough to have my finger nails touch my eyeball anymore.
So, I put my contacts in and then have to put my glasses on. Sean didn’t understand why I was doing that but I explain to Sean that I have had optic neuritis for 22 years so I have a prism on the lens of my right eye to allow me to see clearly. Without the glasses on, my eyes pull in different directions.
When you do something for 28 years, it’s a lot of muscle memory. But what I am dealing with now is loss of ability. My hand strength has been steadily decreasing even though ice cream is my therapy buddy for 17 minutes a day during a rosary that I pray.
I do my left eye first because I am left-handed. Today, I was having the most difficult time on the ceiling the package with the brand new contact N. I wear daily contacts now because I can’t keep track of them anymore. It’s easiest for me to just throw them out after one use.
I was having the most difficult time peeling away the foil to expose the contact in the Celine solution. I think it was about the fourth time I tried that tears started stinging my eyes and I gave my mom a pitiful look as she asked if she could open it for me. It was then that I started to cry. She just broke the seal and allowed me to open it up and I was able to put my contact in my left eye.
I held my breath as I started to pull The foil back from the plastic container with the contact in it. Thank God that it pulled away from the plastic easily! I lit out the brass that I was holding and I really hope that it is just a ‘one off!’
I really had a little hard time last night after the AFC championship game was over. That’s when I would have ordered my Super Bowl shirt! That is a tradition that started once we moved into this house. I remember buying Sean a Ravens hat when they won after the game delay. That’s when we started watching sports together. I even let him stay up to watch the end of the game which was super late because of the power issue.
I started watching NFL football in 2009 when Sean started playing for the Dearborn Lions. That’s when I fell in love with Matthew Stafford! So, historically, I have not had a horse in the race as a Lions fan this deep into the post season. But then he was traded.
I was completely at a loss when that happened and Sean told me that I am a traitor because I became a Rams fan. My friend, Bert, told me that I had to stay true to my heart and so I did.
I have not watched any football this year. Only highlights on Twitter. I feel like a horrible fan but I think my health has dictated that I can’t do it anymore. I have been trying to hype myself up by saying that I will watch last year Super Bowl but I don’t think my eyes can’t handle it.
I was discussing this with my friend, Bert, yesterday and he understands where I’m coming from. He made me feel better with the statement of fact:
So, yesterday, I did NOT order a Super Bowl shirt because I am not even watching it but if I did, it would definitely be an Eagles shirt! I wore that shirt after they won the Super Bowl until there were holes in the armpits! I had to throw it away then!
This evening, well, actually this morning, when I was brushing my teeth to get ready for bed, I needed to open a new package of floss picks.
I have been flossing my teeth every morning and night since I turned 30 and my hygienist told me to do so!
I need to set the scene that caused me to get a punch in the face: my hand strength is steadily declining and I have a method to my madness. I buy the Scope Glide floss picks.
I purchase these picks from Target for 5% off but they only come in the 150 pack. That’s too much material for my hands to navigate through so I buy the 75 packages and my Mom just refills them and I change the package when I change the toothbrush head to my electric toothbrush.
And here comes the punch. Right between my eyes!: I folded over the serrated line to pull off the top to open the package of floss picks and I could not. I tried for a long time! I didn’t have enough strength! My Mom walked over with my toothbrush and I looked at her, in what I think it was a pitiful and desperate look but she took the package and pulled the tab off with ease.
And that’s when I began to cry… #MSsucks… 😒😒😒…
My Mom and I started watching a movie today. It’s a movie that we have seen before but we hadn’t seen it for a long time!
She went to lay down about halfway through it but I continued watching it for this song, it’s worth the rewatch !!!: