In the evenings, sometimes my Mom will lay down, and I will mindlessly play solitaire or 3-D tile match. I have certain playlist I listen to depending on how I am feeling. I believe I was listening to a Sara Bareilles playlist I have and was mindlessly playing 3-D tile match.
I heard a song that I recognized and remembered hearing it. I kind of knew the words and I KNOW that I have shared this song on my blog before But I can’t get it out of my head since hearing it yesterday so I found it by searching the lyrics, “You sang me, Spanish lullabies”:
My Mom got me my first Mother’s Day present this year, she purchased a movie on Xfinity for me then went to get her hair done. I have been thinking about this movie since hearing about the horses in the Kentucky Derby.
I remember reading about Will and Lou’s trip to the race track and I told my Mom that when I was reading this book that was the first time I’ve read from a perspective from someone who knows exactly what it feels like to be disabled.
My Mom and I were talking today and we pieced it together that we saw the movie together when it came out because I had read the book between teaching my classes and I vividly remember one when I was reading it, and it was in such a good part that I kept reading after the bell rang, and tears were welling in my eyes!
I remember telling my kids that you know that you are reading good writing when it evokes emotion, so I was not embarrassed that I was crying at all! It has been long enough since I saw this movie that I didn’t quite remember it but I knew that it was good. I’m glad that my Mom is not home yet because I am STILL crying!
I had seriously forgotten this song and I was taken back to teaching and my Barwis days! I was still driving back then when this song came out…:
I have watched MeBefore You twice now so it only cost to my Mom $7.50 to buy it for me! I am sitting in my house in silence because I have a couple things to say about this. I cried both times I saw this movie. I agree with my assessment from years ago that the people responsible for this book knew what it was like to be disabled!
The first thing that I will say about watching this movie, coupled with watching TheUpside not too long ago, I still stand by my statement that disability is for the rich!
You just see disabled people to get people to care for them they have already made all of the accommodations so it seems seamless. But I just want to set the record straight that nothing is seamless when you’re dealing with a disabled person!!!
NOTHING AT ALL!!! it is so much work!!! I am most grateful that my caregiver does not cost me any money and she does great work!!!
So, I watched Me Before You three times in the past two days and I was thinking that I wanted to continue on with and Emelia Clark marathon. I did not want to watch Game of Thrones again (I binged that in like 10 days or something) so I had to go against the grain and watch a Christmas movie on May 12.
That’s what I did today I watched Last Christmas and that movie hash the best soundtrack ever! Last night, this picture showed up in my phone, so I think that Big Brother knew what I was going to do!:
When it was over, it switched back to the Hallmark channel. That’s what I was watching before, so I just started watching A Crown forChristmas again. Actually, I just let it Play until I was tired of hearing it and then I turned it off.
I think that I will watch this movie between Thanksgiving and December 1 before I watch Love Actually!
Today, I had the worst choking fit that I have had to date. I was eating my lunch and it came out of nowhere! I had just taken a little bit of a gruel to eat. Really?! It was such a small amount of food!
I am no stranger to choking and I adjust my chair accordingly. At this point, I just calmly adjust the joystick to move the gears of my chair so I can sit up to open my airways to finish choking.
I am having a very hard time with the weather right now! It is doing terrible things to my body with the extremely inconsistent change in temperature! So, I was having a hard time adjusting my chair. I was frantically trying to change the levers to allow me to set up so I could clear my throat.
In that time, I continued choking and pressed the horn on my chair, my Mom came over and I waved my hand and I think was able to choke out,, “Sit up.”
She was able to adjust my chair, so I was able to get air into my lungs. As I continued choking, tears were stinging my eyes and once I was able to stop choking, my Mom took her headphones off because she was on the phone and asked me if I wanted a hug.
For me, there is something about my Mim’s voice! Tears started streaming down my face as I nodded silently. She hugged me and I let the tears flow freely, because this absolutely made me so scared!!!
This song was commented on in one of my MS support groups. I belong to 17 of them, and they are most helpful! I really like that one of my groups is adding songs to it. (I belong to a group specifically for music lovers with a mess and this one is separate but I love that it’s happening!!!)
So, maybe about a week ago, someone posted this song, and another person commented on it. She said that this song was written when Rob Thomas’ wife was diagnosed with Lupus. Then she added that it is similar to having MS.
I am well aware of that fact, and I know and am related to people who are dealing with living with Lupus! Lupus has a GREAT color, the color for lupus is purple.
Listening to this song after hearing that takes it to a whole nother level!!!
So, I got this email on May 12 and I was shocked when I saw it:
Wait. What?! Back when I was in high school, I tried to bring that word back super hard! It never stuck! I said it all the time till about junior year and then I had to stop because it was not coming back. I saw that email and I was aghast!
I graduated 23 years ago, and we were NOT saying Rad! How I wish I would have been! How I wish everyone would have been! But now?! That’s NOT cool! I guess I was ahead of the curve!
I never had a formal graduation party with my entire family because my Dad had open heart surgery the day after I graduated! He was in the hospital when I graduated with my bachelors degree, he had already died when I got my masters degree.
My Mom asked me probably in about 2010 why I did not give out all of my graduation pictures and she was kind of irritated with me because I was very particular about my pictures! I had two different photo shoots. One indoor and one outdoor. I just matter-of-factly reminded her that my dad had open heart surgery the day after I graduated, and I did not have a party that summer; he was recovering!
I knew that my senior pictures were in my Dad’s armoire or in my Mom’s drawer. My Mom went to her house in March and she brought the little box of my pictures. They have been sitting on my table for about two months, but she took pictures of them so I could see them.
I guess it’s better late than never but these pictures are 23 years old. It was the beginning of the end before I even knew it. I was diagnosed with MS the December after I took these pictures:
Okay, about those eyebrows! That was the style! I was cool! And I have no idea where my class ring is now…
I still own that blanket! It has a hole in it from my wheelchair, but I still have it! I have always LOVED cookie monster!
I remember that American Eagle shirt! I got it because I was a 2000 graduate!!!
Oh, those shoes! Those shoes are a size too big, but the name was in the tongue, and the name of the shoe was, “Jenny.” I HAD TO HAVE those shoes! They were heavy to walk in and those jeans were my favorite pair of jeans!!!
I am pretty sure that the necklace I am wearing. Was my a guardian angel necklace? I got from my brother, Steve, for my Confirmation. He was my sponsor.
This was the final picture. But the whole reason that I shared these pictures is because you can see how long my hair was and I am going tomorrow to get my hair cut even shorter. I was talking to my best friend about it last Friday and this was my consensus to her:
I am tired, but I am not exhausted, but how I feel warrants some u2!!! I’ll put on my u2 playlist specifically just the, “The Best of 1990 to 2000.”What a great album! That reminds me of driving to work at dfcu financial! It’s winter time, and i’m working in the drive-through with Matty and we talked about that song specifically 23 years ago! And yet it is STILL my jam!
There is something about Bono’s voice that speaks to my soul!!! I was trying to decide on a song to post here for your listening enjoyment! I searched a little and I found the complete album AND the B-sides?
I thought that I would switch to my spring flavors for my chapstick after yesterday, but I had my heat on last night! The temperatures are NOT springtime temperatures, so I guess I will try again on June 21 because I’m cool with staying with my pomegranate chapstick! It’s quite retro!
It reminds me of going to Barwis in the very beginning but while I was going there, I graduated to açai berry which is no longer available but I have a bag of 10 of them that I ordered from Amazon probably about eight years ago. I wonder where it is? I wonder if it’s still good?!
May, “Go Time” was hard on me!!! It was hard on my Mom too! She is laying down right now and it took me a long time to wake up today! It was successful though!
I love that I’m going back to see Dr. Clark and he gave me a different supplement to add on Wednesday. I got my hair cut and then I had a doctor appointment on Thursday where I was able to get my weight and my blood work done as well as a new prescription for a new power chair. I asked her about my blood because it’s pretty low and I seem to get faint and lose my breath when I set up and I am transferred out of bed.
I asked Dr. Clark about it and he said for me to ask Dr. Chamas about it. He will deal with it after she makes her recommendation. Dr. Chamus was not too concerned because I have had low blood pressure probably for the past 10 years.
My blood pressure is on my mind now, so you know what song is in my head, don’t you?!:
