So, most of my fellow MS warriors live on the opposite side of the clock (like me). We are night owls and have difficulty waking up in the morning. I saw a tweet from a mutually followed MS warrior and wanted to write about it before today but I’ve needed some time for it to sink in:
I 100% agree with this! After I went back to copy the meme, I searched through her feed a little bit and saw this one:
I also 100% agree with this one as well and it answers a few more of my questions. It’s the reason that I text people instead of talking on the phone with them, can no longer sing along with the radio, and no longer have my, “Teacher voice” just to name a few. Yep, #MS(REALLY)sucks!!!
I am a very sentimental person and a lot of things I do go along with that fact! I do silly things for my own amusement but I think somewhere in there, I have given my son some lasting memories.
I just thought about this today in passing. I found out that it was December 15, 2020 that Sean texted me this picture from work. He is a porter and detailer at a local car dealership:
He was driving some car and this song started to play. I know this is a, “Lasting memory” because he is 19 years old now. 30 days before he was turning 17 and I was still recovering from knee surgery, I would play this song on my phone as I laid in bed when I heard him getting out of the shower and as he got ready for school.
I really dig this song and I didn’t mind playing it every day but I played it for my son who was going to be 17. When he sent me this picture, I laughed and later that day, I told him that when he has a 17-year-old, he knows what to do! It was his turn to laugh and he kind of shook his head and agreed.
I made a memory really just for my own amusement but the fact that my son sent this picture to me when he heard the song at work and he is 19 makes me feel like I may have made a few other, Lasting memories.”
Last night just before midnight, I shared this video on Facebook:
I didn’t see the 360° Tour because I was already a homeowner at that point and could not in good conscience pay $500 for two tickets to go see it. I would have taken my brother because I don’t share U2 with anyone!
Unfortunately, there are a couple guys who I think of when I hear certain songs but I try my best to put that out of my mind because they are my band!!! Even Facebook quizzes know that:
I really dig taking these Facebook quizzes and they let me know that big brother really knows me or more importantly, in this case, my soul! 😂😂😂
But, I watched this video because I never got to see the 360° tour and this song reminds me of so many things back when I lived in the land of the able-bodied.
This song reminds me of winter time and driving to my job while I was in college. I worked at DFCU financial credit Union. This song reminds me of Matt Davis, “My Matty.” He hired in after me and I was listening to the Best of 1990 to 2000 in my car at that time.
He told me that his older sister liked them and he specifically referenced this song. It’s really cool that I just put my Apple Music playlist on shuffle now and I can hear and then whenever I want to! This song specifically reminds me of working in the drive-through with Matty back when I was “Able.”
So, I had an appointment with the neural ophthalmologist today. First appointment in about 10 years. My appointment was at 1:30 in the afternoon and then just got home at about 7 pm. I will write more about it, maybe tomorrow, but my eyes are still super dilated and I am tired!
You know that I had to cut off most of my overgrown eyebrow in this picture…
So, I had my neural ophthalmologist appointment yesterday that really wiped me out! The appointment took four hours! But, it wasn’t four hours of waiting around for the doctor to come in; it was four hours of 1 million different eye tests in two different rooms!
I’ve had a long relationship with Dr. Skarf but it has it been a long distance relationship meaning that I saw him the first time when I was pregnant (19 years ago) and then I saw him about 10 years after that. And then I saw him yesterday. So it has been a long time between visits!
He told me that he couldn’t recognize me with my mask on and I had a winter hat on because I get cold easily but he remembered my previous appointments. At least, he has the results of my previous tests in the system.
He had a student with him who did most of the testing but listening to them talk to each other about the results was like they were speaking a completely different language!
At the end of the appointment, Dr. Skarf told me that it was remarkable that my eyes have not changed that much. He told me that MS is never going to get better but in the last 10 years, my vision hasn’t gotten much worse. I am very grateful that it has not gotten much worse from a clinical standpoint. I feel it’s gotten worse but he knows exactly how bad it can get and mine is not that bad yet.
He also told me that if I wait another 10 years to see him again, he will not be here (at the office). By now, Dr. Skarf has to be close to 80 years old. The intake tech, named Jamie, told me that I should see the neural ophthalmologist every two years.
Okay, so a couple things: my time shift has still NOT changed because I went to bed super early this morning and I woke up late in the morning. I am still drinking my water and I just finished my protein shake but my Mom is taking Leia for a walk so I might as well post now. Today IS a better day. Better than yesterday but in the past 20 years, no day has been really good. I would say lots of grants as my body spasms but the groans are reserved for when I am really in pain and I haven’t groaned yet. Grants, yes but groans, no.
I actually thought of this song for a couple of reasons. First of all, my Mom is not a football fan at all!!! Being sheltered in place with her, I have respected that fact and I just have checked the scores on my phone rather than putting her through hearing me scream at the TV.
However, today, the Saints are playing the Buccaneers. I told her that I want to watch that game this evening. I have so many memories tied to these two quarterbacks playing tonight. A few years ago, I had to be taken to the hospital via ambulance because my surgically repaired knee popped out and it really hurt and wasn’t popping back in.
it was Wild Card weekend and I really wanted the Saints to win and the EMT who was in the back of the ambulance with me wanted that too! We started off the conversation on our way to the hospital when I told him that all I wanted to do was watch football! As we talked, I discovered that we both wanted the Saints in the Super Bowl! That didn’t happen.
Then, I think back a couple more years when the Eagles were playing the Patriots in the Super Bowl. I’m not a fan of Tom Brady which is strange because he is a U of M graduate as well. My physical therapist said that I was just, “Hating on greatness.” Which made me laugh. But I’m going to watch the game tonight and my Mom is okay with that.
As I thought about talking about football with people I really don’t know, I was reminded of my five seconds of fame on GMFB.
This was a couple years ago, and they were discussing the London games. With all Kyle Brant’s 90s pop culture references, I tweeted him and asked him why he did NOT reference the Third Eye Blind song, “London.” Peter Schrager commented on my tweet and so, in the next segment, Kyle Brandt said, “Someone on Twitter…” and that someone he was talking about was me!
So, I thought about all of these things because I am going to watch the Saints and Drew Brees play Tom Brady this time on the Buccaneers. I still want the Saints to go all the way or at least beat the Buccaneers! But these thoughts/memories may bring me out of my 3eB rabbit hole of songs that I thought of that I almost forgot. It’s the song that I told Kyle Brandt to talk about:
I belong to 15 MS support groups on Facebook. A lot of my Twitter followers are neurologists, advocates, and follow MSers. Most of the groups on Facebook are private and I can discuss things going on in my body and know that they are experts because these things are going through their bodies as well!
I feel that I have developed somewhat personal relationships with a number of them even though they live thousands of miles away from me. They really get me at my most basic level!
I feel most grateful that I have just been invited to a group that focuses on music and MS. Music is kind of my thing and how I deal with what’s going on in my body. This is an extremely large group where we can just post songs. I am LOVING it! I can’t scroll through for sometimes hours and see random songs that I love! It is an extremely eclectic group whose members span many decades!
I saw this song just a few days ago and when I tried looking for it again, I couldn’t even find it because so many songs are posted throughout the day. I saw this song and I clicked on it to listen to it. It was a song that I have not heard or thought about for 20 years! Hearing it, made me cry and I remembered having to correct the person singing to me that I am only 5’0 and NOT 5’1.
First and foremost, I want to say that as an adult and the youngest of five children, I 100% know that ALL of my brothers love me!!!
I am not going to lie, however, growing up, that love was NOT always apparent to me! I have lived through much torment at the hands of my older brothers! I don’t want to belabor that fact but, whether it was getting my name written on my bald head as a baby, My head being wrapped in masking tape when I was young, being pushed and causing me to flip over the couch and land on the carpet while I stood with my thigh and knee on the arm while I watch TV in the living room, or even me having to give one of them a left hook to the eye when I warned him if he continued to bother me that that would happen!
But, now that we are all adults (AND I am the only one of us still in our 30s!) I am confident that they all love me and I love all of them!!!
With that being said, I have discovered that when I am watching TV or using my phone, I need to wear my glasses. The prism helps me to see more clearly. Well, yesterday, my brother, Dave, was on a FaceTime call with my Mom and she turned the camera toward me to show my brother that I started wearing glasses again. He did not waste any time once he saw me, he asked, “What’s up, Four Eyes?!” We both began to laugh and he let me know that he had no problem flipping me over the couch which made us laugh even more!!!
Janice Joplin videos have been showing up in my Facebook feed and I don’t mind it at all! The first one to show up was yesterday and it was, “Piece of my Heart” and today, I saw, “Me and Bobby McGee.”
I immediately was reminded of a conversation a had with a former colleague that had to be about 10 years ago now. Somehow, we were talking about music and I think I mentioned this song to her. My memory of this occasion is a bit hazy but she gave me a burned CD to listen to while I drove to my acupuncture appointment. She didn’t even tell me who was singing but I took it and loved this version of this song.
When I reviewed this song the next morning to her, she told me it was sung by Jennifer Love Hewitt. I have since misplaced this CD but I can always search it on YouTube which I did! I REALLY dig this cover!!!:
In the 38 years I have been living, I don’t normally high-five my Mom. However, now that she is my full-time caregiver and we have been sheltered in place together since March 2020, we pray, listen to music, laugh, and talk about a lot of things every single day as she is assisting me to get ready for the day.
We laughed a lot today after we prayed and before we listened to music and it reminded me of our conversation from a couple weeks ago. I have heard this story numerous times but I really like to hear it. My Mom will tell the story and it always makes me laugh because this was back in March of 1982. My birthday. My Mom went into labor with me and she and my Dad were in the hospital room. She has told me that the intake nurse was gathering her information about how many children my Mom had. She asked my Mom my oldest brother’s name and his father. My Mom told her and then she asked my second oldest brother’s name and his father. My Mom listed all four of my brothers and my Dad is also their Dad.
The intake nurse was in disbelief and she called three or four other floor nurses to hear what my Mom had just said and asked her again. They all could not believe it and this was back in 1982.
A couple weeks ago, she was telling me that story again and I told her that in 1982, it was common place to have just one, “Baby daddy.” After she was finished telling the story and we talked about it. I told her that I had just one, “Baby daddy” because I only have one child.
Uncharacteristically, she told me that she also has just one “Baby daddy.” I began to laugh and put my hand up not really thinking that she would high-five me but she high-fived me. We both laughed a lot.
I remember when this song came out so many years ago and I think it’s kind of funny still:
