I made a decision today. It was kind of sad for me. I know that I am completely being melodramatic but my decision is that this will be the first year since 2009 that I have not been interested in the Super Bowl. My eyes can’t handle it.
I was talking to my Mom about it and I had to verbalize what I was thinking. I had to finally admit that my eyes can’t handle it. I knew that it made no difference to my Mom but I had to say it. That made me sad!
I am sure that I will catch highlights during the game on Twitter and I may watch parts of the Super Bowl. I’m not sure. I told my Mom today that last year I couldn’t even eat my Super Bowl food so this year, I can’t even watch it. #MSsucks!!!
I am indifferent to both teams who are in the Super Bowl this year but I really like this storyline:
I met my best friend Ami when I was working at dfcu financial just after I had Sean. We immediately hit it off! We had the best time sitting by tether as tellers in a credit union but when we both were working in the drive-thru, we had the BEST time!
It’s been 21 years since I met her and we both have been through so much and we completely understand each other! She sent me this meme today and I had to respond because I loved it:
I texted her this immediately:
I am completely convinced that there is a reason that we are friends! She is the BEST!!!
Yesterday, I shared this meme with my Mom and I laughed hysterically which she could not understand why. I went two days without combing my hair and this morning, before I put my hat on my head, I combed my hair:
I have not been feeling well for about a week (well, really for 22 years) and I still don’t feel well but it’s a “best” day because my hair is combed now! That’s why I laughed so hard! I feel no differently and everything still hurts but somehow things are better just because my hair is combed?!
I think that I have been feeling badly since January 11 when I spoke to my nutritionist but then disease progression seemed to pick up The pace at the same time and I am completely dumbfounded!
It’s really taking me some time to get my footing because my head is reeling!!! I sent this meme to my Mom and I laughed hysterically and she was surprised that I did:
I never thought that things would come to this but here we are. My Mom got me out of my bed and I washed my hands and got my morning pills out of my pillbox just as my Mom was coming into the living room from the kitchen with my nutrition shake because now, that needs to happen immediately! I get to faint because I have been sleeping all night!
She walked over to my chair with my shake and her hand and I looked at her and had my Duluth hat in my hand and before I took the shake, I affixed the hat on my head at the same time I was telling my mom, “ I’m not combing my hair again today!
I didn’t comb my hair yesterday either. I cannot control my body temperature at all now so it really doesn’t matter that I didn’t comb my hair because I haven’t seen it at all yesterday or even today because I wore my hat all day yesterday and all day so far today. But, eventually, I will have to wash it and I’ll comb it then!
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.
