Month: January 2021

High-Five

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:

Me and Bobby McGee

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!!!:

“What’s Up, Four Eyes?!”

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!!!

Late Night Addendum to “A Prism…”

So my eyes were a bit wonky and while writing my blog post, my phone had a glitch and it was lost twice so I had to re-speak my writing into my phone. Now, I am still rocking an iPhone 7s and it works for me. I don’t have money to get a new phone anyway but sometimes it gets glitchy because it is so many years old. As I am laying in bed not really sleeping yet, I reread my blog post I wrote earlier to edit it. I am extremely embarrassed that there were so many errors! For that I apologize profusely!!!

One thing I did notice was that a picture I tried to insert into my post didn’t let me and I think that’s because I over-cropped it. This is the picture I wanted to insert and my previous blog post:

Karen is standing in the front row and is the second person from the left. She is wearing the blue blouse and checkered skirt with penny loafers. She chose to wear her regular glasses (I think) and put her reading glasses? around her neck. I haven’t read this book for 30 years but I think that’s how I remember it.

I haven’t worn glasses in so long but I specifically remember this book normalizing wearing glasses and I liked it because by that time, I had glasses!

And, sorry about the errors! I truly AM embarrassed!

A Prism OR Non-Prescription Nerd Glasses

A couple years ago, I ordered an eyepatch because my vision has gotten pretty wonky in the past 20 years.

My right eye was the first one affected with optic neuritis and years later, my left eye joined the party. I wear the patch watching basketball with my son or watching any fast action movie. I’ve even worn it when I go to the movies but don’t put it on until the house lights go down. Recently, I think Leia got a hold of it and frayed the strap a little bit but that didn’t bother me:

It was during my ophthalmologist appointment last week and the four hours of testing when Dr. Skarf determined that a prism could really help me out with the vision in my right eye. He didn’t want me to get glasses at the eye care center but told my Mom to just go to, “Walmart” or a store like that to get glasses without a prescription in them. He would put the prism in once we brought him the glasses.

I got onto Amazon to order them. I had never ordered glasses online before like this so I just went with the pictures to decide if I was going to buy them or not:

The description says that the are, “Non-prescription nerd glasses.” As my Mom took the glasses to the doctor, I thought of a book I read 30 years ago. It was from the book series, The Babysitters Club Little Sister:

I thought of this book specifically because, Karen, the protagonist, had glasses. They were red just like mine and she gets a pair of blue glasses just before her school picture. She didn’t know which pair to wear for her picture. She ends up wearing both of them:

    So, even though my glasses are neither red nor blue, I thought of this one. My Mom and I watched a movie last night and I put the glasses on. I could see clearly and when I turned my head to the right to look at my Mom during the movie, I could see just one of her which I liked. It look like the prism was helping. Here’s what that looks like:

    ALMOST Forgotten Tune #98 OR My MS Support Groups

    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.

    ALMOST Forgotten Tune #97

    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’m kind of excited to watch the game tonight!

    Shifted

    Back when I used to teach, I would wake up at 4:30 in the morning in order to shower before work. When I first started working, I used to be at work at 6:30 in the morning. But then as my disease progressed, I ended up getting to work later and later. I just attributed that to me being a better teacher and not having to do a lot of work before school. In retrospect, my disease was just getting worse.

    I think it must have been five or six years into teaching when I got first hour prep. That was helpful and as the years went by, it proved to be extremely helpful! It seemed to take me longer and longer to get ready for the day.

    I think it was my last two years of teaching when I stopped driving. The first school year that I stopped teaching, I was still in a normal routine because Sean still got up to go to high school. And I HAD to get up to watch GMFB?!

    But, since the beginning of this pandemic, things have shifted. My disease has continued to progress and my days have also begun to shift. For example, I didn’t end up falling to sleep last night till after two in the morning. Therefore, I didn’t wake up until 11 and it took me a while to be in a position to get ready for the day.

    Today, things are a little more painful than other days. Getting ready for the day was rough! There were A LOT more groans, grunts, and even a few tears. Today, I really feel that MS is winning. Well, I KNOW that MS is GOING TO win eventually but today is a little bit harder. I kind of want this day to end so maybe I can feel better tomorrow. Since my day has shifted, it’s going to be a while until I make it to bed. Quite honestly, I just finished drinking my protein shake for lunch so I will be up for a while. Hopefully, no more tears but the grunts are still continuing.

    Remarkable

    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.

    Neural Ophthalmologist

    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…